tag:blogger.com,1999:blog-54458123838515725812024-03-10T13:49:11.933-04:00 AUTISM DADDY I’m a 47 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-). For the full Autism Daddy experience like my Facebook Page at www.facebook.com/AutismDaddyAutism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.comBlogger350125tag:blogger.com,1999:blog-5445812383851572581.post-3595370488596988162017-11-20T13:51:00.000-05:002018-01-31T22:21:54.878-05:00My AUTISM Review of the "Night of Too Many Stars" Event<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKN7HRdMM2j1d0zBdD-xQ5XgIApEwNZZ_xzAUX3sVqLXSEBf3GY4hKiOCTMbKfU4S10xbcZCGsl7sIwwPSY8ZXM3-xJ-cy0cmjhrRCAXx7bIa3cdJhzSQrV-UN8UMSBnh_tTv8heACWfI/s1600/notms+carly+2+with+colbert.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="722" data-original-width="1432" height="201" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKN7HRdMM2j1d0zBdD-xQ5XgIApEwNZZ_xzAUX3sVqLXSEBf3GY4hKiOCTMbKfU4S10xbcZCGsl7sIwwPSY8ZXM3-xJ-cy0cmjhrRCAXx7bIa3cdJhzSQrV-UN8UMSBnh_tTv8heACWfI/s400/notms+carly+2+with+colbert.png" width="400" /></a></div>
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<span style="font-family: arial, helvetica, sans-serif; font-size: x-large;">Hey guys,</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">So I had the honor of attending HBO's Night of Too Many Stars event at the Theater at Madison Square Garden this past Saturday night.</span><br />
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</span> <span style="font-size: x-large;">This was a 2 hour benefit / telethon hosted by Jon Stewart to support the organization <u><a href="https://www.nextforautism.org/" target="_blank">Next for Autism</a></u>. </span></span><br />
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</span> <span style="font-size: x-large;"><i>NEXT for AUTISM is a non-profit organization that transforms the national landscape of services for people with autism by strategically designing, launching and supporting innovative programs.</i></span></span><br />
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</span> <span style="font-size: x-large;">If you didn't get a chance to watch the show you can watch it on HBO GO and HBO Now.</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">You can also view the entire 2+ hour event for free on youtube below or <a href="https://youtu.be/pVypbknP4A8" target="_blank">HERE</a>. HBO put the whole thing up for free. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">Why was I in the audience you ask?</span><br />
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</span> <span style="font-size: x-large;">I got a free "press" ticket from a friend of mine who works at HBO and has been a long time Autism Daddy supporter and follower. </span></span><br />
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</span> <span style="font-size: x-large;">What follows is my unbiased review.</span></span><br />
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</span> <span style="font-size: x-large;">However, let me say straight away that I am not going to review the comedy of this event. I'm a huge John Stewart fan... and don't mind raunchy foul mouthed comedy. And because this was on HBO, at 8pm on a Sunday night, I expected and was looking forward to lots of F bombs and MF-ers. </span></span><br />
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</span> <span style="font-size: x-large;">And that is just what I got. I had no problem with the comedy. </span></span><br />
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</span> <span style="font-size: x-large;">I personally thought the show was fabulous and hilarious. </span></span><br />
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</span> <span style="font-size: x-large;">If you want to read a good review of the comedy of the show, read Vulture's great article <a href="http://www.vulture.com/2017/11/hbo-night-of-too-many-stars-highs-and-lows.html" style="text-decoration-line: underline;" target="_blank">"<i>The Highs and Lows of Night of Too Many Stars, Jon Stewart’s Autism Benefit Show</i></a><i><u>"</u> </i></span><span style="font-size: x-large;">for a complete blow by blow of the 2 hour show.</span></span><br />
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</span> <span style="font-size: x-large;">I'm here, however, to review/recap the autism related portions of the show. And I thought that these were equally fabulous. </span></span><br />
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</span> <span style="font-size: x-large;">Jon Stewart started the night off by explaining what's different about the organization Next for Autism. </span></span><br />
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</span> <span style="font-size: x-large;">He explained that </span><span style="font-size: x-large;">while many organizations engage in advocacy or fund scientific research, NEXT For AUTISM addresses the needs of people with autism and their families across the country, <i>right now</i>. They create and support exceptional educational, clinical, and vocational programs, all cutting-edge, all with an eye towards affecting fundamental shifts in current approaches to autism services.</span></span><br />
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</span> <span style="font-size: x-large;">And then throughout the night they showed several films that captured stories of autism families and individuals and how Next helps them. </span></span><br />
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</span> <span style="font-size: x-large;">My favorites of these films were: </span></span><br />
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</span> <i><span style="color: blue; font-size: large;"><span style="font-size: large;">Felicia Johnson, a mom of a son with autism, Josiah. She explained how she lost her home, her husband, and then her son was diagnosed with autism. Then an organization DAMAR Services - <a href="http://www.damar.org/">www.damar.org</a> </span><span style="font-size: large;">gave a helping hand. </span></span></i></span></div>
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</span> <span style="color: blue; font-size: large;"><i>Former private investigator Dennis Debbaudt discusses how his son with autism shaped his life and how that lead to formulating and training criminal justice professionals, police, and emergency responders on how to respond to autism.</i></span></span><br />
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</span> <span style="font-size: x-large;">And then there was Carly Fleischmann. When I first heard that Carly was going to be on the show I googled her to see what she's been up to lately. </span></span><br />
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<span style="font-family: arial, helvetica, sans-serif; font-size: x-large;">I had seen her famous </span><u style="font-family: arial, helvetica, sans-serif; font-size: xx-large;"><a href="https://www.youtube.com/watch?v=a34qMg0aF6w" target="_blank">interview </a></u><span style="font-family: arial, helvetica, sans-serif; font-size: x-large;">with Channing Tatum, but I didn't know that she had since gone on to interview a bunch of other celebreities and has her own web talk show, </span><u style="font-family: arial, helvetica, sans-serif; font-size: xx-large;"><a href="https://www.youtube.com/channel/UCeKKQlMB1NeOLN31_CSJFRQ" target="_blank">Speechless with Carly Fleischmann</a>.</u><br />
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</span> <span style="font-size: x-large;">So I assumed that they would show a film about Carly and maybe she would be in the audience. They did show a film about Carly. This film.</span></span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">And while this film was playing I'm sitting in my seat at the Theater watching them wheel out a talk show desk and chair. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">And then I realize that Carly is going to do a live interview with someone. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">And then out walks Carly and Stephen Colbert, and my first thought was <i>"Way to go Carly!"</i> </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">And then my next thought was "<i>wow, interviewing someone in her home has got to be way different than interviewing someone on live television in front of an audience of 2000 people!"</i></span><br />
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</span> <span style="font-size: x-large;">And then the film ended, the lights went up, and there was Carly interviewing Stephen Colbert.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNN49iqG3-jZAroNRhRjR5vQeKOmTaGCZxFLeN3JE2prd15dQ1Yv2AbU9CWWZO-kogvm-smb4xxXSqEzuUkoY3tH1nx6ETKDVSGOxGmJHuRz4nfZcFqAbswFpP_UXvIbKTTxCJcV9HSf0/s1600/notms+carly+2+with+colbert.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><img border="0" data-original-height="722" data-original-width="1432" height="201" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNN49iqG3-jZAroNRhRjR5vQeKOmTaGCZxFLeN3JE2prd15dQ1Yv2AbU9CWWZO-kogvm-smb4xxXSqEzuUkoY3tH1nx6ETKDVSGOxGmJHuRz4nfZcFqAbswFpP_UXvIbKTTxCJcV9HSf0/s400/notms+carly+2+with+colbert.png" width="400" /></span></a></div>
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</span> <span style="font-size: x-large;">And all went ok for a moment, but then Carly's</span></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"> autism kinda took over, or actually Carly's OCD took over and she got distracted by the hundreds of pieced of paper confetti that littered the stage (because of an America's Got Talent spoof comedy bit earlier in the night). And the next thing you know Carly is down on the floor distracted by the paper</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKLuvhYBcA9oMoD3iBeYnydweXs_ZzRSDkBqYr_lWBhn1mxV-x3GAnOoJPu22hv1OyhxLxJkOID9GeoQt34wPBwzBUSaoKcZhaZQGXlSsUDYwHvOAXiTVat03SuUMjvuvDJXLm_w1JvM4/s1600/notms+carly+3+with+colbert.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><img border="0" data-original-height="741" data-original-width="1111" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKLuvhYBcA9oMoD3iBeYnydweXs_ZzRSDkBqYr_lWBhn1mxV-x3GAnOoJPu22hv1OyhxLxJkOID9GeoQt34wPBwzBUSaoKcZhaZQGXlSsUDYwHvOAXiTVat03SuUMjvuvDJXLm_w1JvM4/s400/notms+carly+3+with+colbert.png" width="400" /></span></a></div>
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">And one of her aides came out to try and redirect her...</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUX3A8QEyh_Z3kdYkkZ66ykFmcTFR2sdHiHBj1lTBZODtfq0px66juIpaVpIxUIDpA3equT6g2PKXLZW4s8CHlBtqsoTLc13ODsSAGGisib5vAbx-92OJyCeLczuIqSrE5SXZiKBGhZ3g/s1600/notms+carly+5with+colbert.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><img border="0" data-original-height="417" data-original-width="773" height="215" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUX3A8QEyh_Z3kdYkkZ66ykFmcTFR2sdHiHBj1lTBZODtfq0px66juIpaVpIxUIDpA3equT6g2PKXLZW4s8CHlBtqsoTLc13ODsSAGGisib5vAbx-92OJyCeLczuIqSrE5SXZiKBGhZ3g/s400/notms+carly+5with+colbert.png" width="400" /></span></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">but the damage was done, and Carly couldn't be redirected. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">So Stephen Colbert calmly motioned to the band, "The Roots" to start playing which they did. And the HBO team quickly regrouped and went to the next celebrity filmed piece.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">Entertainment Weekly has a good article on the whole incident and the amazing way that it was handled by everyone involved. </span></div>
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<u><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><i>"<a href="http://ew.com/tv/2017/11/19/jon-stewart-autism-awareness-carly-fleischmann/" target="_blank">Jon Stewart gracefully highlights autism awareness when segment doesn't go as planned</a>"</i></span></u></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">From that article:</span></div>
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<span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><i>Fleischmann’s interview was cut short when she became distracted by golden confetti on the stage due to her OCD, prompting Stewart to talk about the challenges of doing talk show segments live, and to joke that it used to take three weeks to film one episode of The Daily Show. </i></span></blockquote>
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<span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><i>“It also shows you something really important because she is a brilliant interviewer and a really funny person, and people with autism have challenges and obstacles to get through,” Stewart said. He went on to take the blame for the way the segment went, calling himself an “a—hole” for shooting the golden confetti out onto the stage earlier in the show. “She’s awesome and she’s super-funny and smart,” he added.</i></span> </blockquote>
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<span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><i>Colbert also approached Fleischmann in the audience later to explain further and promise to do the interview at another time. </i></span></blockquote>
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“I wanted you to know that Carly’s distraction had nothing to do with her autism and has everything to do with her OCD,” Colbert said. “And I really want to do this interview with Carly. I got a peek at her questions and honest to god this was going to be a real interview and we’re going to do it in the future.” </i></span></blockquote>
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<span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><i>Colbert said the questions Fleischman wrote were “hilarious” and then joked, “No matter what happened, at least you didn’t bring out Sean Spicer” — a reference to Colbert’s poorly received stunt when hosting the Emmys in September.</i></span></blockquote>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">The whole thing was handled <b><i><u>extremely </u></i></b>well by everyone involved. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">And, as the dad of a kid with severe autism it was, honestly, my favorite moment of the night.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">Why, you ask?</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">Well, of course in my heart of hearts I was rooting for Carly to do well. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">And while it would have been much better television to see Carly conduct a funny interview with Stephen Colbert, I was sort of happy that the world got to see that, even the kids who have these miraculous amazing stories still struggle mightily every day.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">The last autism moment of the night was the big finale. The big musical number with <a href="https://en.wikipedia.org/wiki/Jodi_DiPiazza" target="_blank">Jodi DiPiazza</a>, a young woman with autism and the <a href="http://actionplay.org/" target="_blank">Actionplay Chorus</a>, a choir of kids on the spectrum, singing "Rise Up" with British singer/ actress Cynthia Erivo </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/Da7J_SrjBj0?rel=0" width="560"></iframe></span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">It was truly magical.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">And that moment when all the parents came out and stood just behind their kids on stage is when I kinda lost it, but there really wasn't</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"> a dry eye in the house.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">That's it. That's my review / recap. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">So happy and honored that I was able to attend.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">What can I say? A great autism event which already has raised over 2 million dollars, and the money keeps rolling in... and all for a great and important cause!</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">If you'd like to donate you can donate online at <a href="https://toomanystars.org/donate/">https://toomanystars.org/donate/</a> or text Text STARS to 50555 to give $25</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">Thanks... Autism Daddy, over and out!</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;">THE END...</span><br />
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<br />Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com2tag:blogger.com,1999:blog-5445812383851572581.post-23484409615737164532017-11-09T14:27:00.000-05:002018-01-31T21:53:22.909-05:00Becoming a "Typical" Teen at Just the Right Time<br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I'm starting to write this post at 9:30pm on a chilly Wednesday night. I'm sitting on my couch in my underwear eating frozen pizza while watching "Curb Your Enthusiasm" and writing this.<script type="text/javascript">
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I am home alone. The king is with his mom tonight. I had him Mon & Tues nights this week, she has him Wed & Thur nights and then we alternate the weekends. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">4 months into our separation </span><span style="font-family: "arial" , "helvetica" , sans-serif;">(read about it <a href="http://www.theautismdaddy.com/2017/08/wifey-and-i-have-separated.html" target="_blank">here</a>)</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> & living apart and I'm still not entirely used to this. When he's not with me, and I'm not busy, things just feel a bit odd, especially during the week. I get home from work, and feel like I'm supposed to be doing something!</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I wrote about it a bit a few weeks ago on my <u><a href="http://www.fb.com/autismdaddy" target="_blank">Autism Daddy Facebook page</a></u>:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Some mornings when he's not with me, I wake up in a jolt and think "is the seizure monitor on! did i miss something!"</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">However, this post isn't about me. It's about him. And as I said in that Facebook post, he is handling everything extremely well.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I say that with happiness & pride, but I also with a sense of fear and dread. I'll explain that in a bit.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">you're probably wondering: </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">what's this blog title about him becoming a typical teen all about? ...</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Before I begin that story I should mention that I recently re-arranged his bedroom and got him a new tv up with a DVD player & a Roku connected to it. It is slightly more age appropriate for a 14 year old.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Ok, so here is the typical teen story. Since the separation when the king is with me he's been his usual easy going self. He's been very affectionate with me, which is normal for him. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">However, at some point every evening he grabs his ipad, then takes me by the hand leads me to his bedroom, takes my hand to put it on his tv. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I put his tv on and start one of his favorite shows. He then takes me by the hand, leads me out of his room... and then closes the door in my face.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">He kicks me out of his room!!</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So, I go downstairs to watch tv or eat dinner, all the while watching him on his seizure camera. And he is lying on his bed with his hand down his pants, while watching a show on the tv and youtube videos on his ipad at the same time. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Now does that sounds like a typical 14 year old or what? He wants nothing to do with his lame middle aged dad, he just wants to sit in his room all day doing his thing!</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">There was one night a few weeks ago the NY Yankees were still in the playoffs when I watched the <b><i><u>entire </u></i></b>game downstairs while he watched his stuff upstairs. I would, of course, check on him, and he was pleasant and happy to see me, but I could tell he would rather I leave!</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">What a typical punk ass teenager! Now here's some things that are not like a typical 14 year old. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The show he's watching on the tv? Dora the Explorer </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The youtube videos he's watching? Sesame Street videos.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And when his show ends or he gets stuck on some other non Sesame youtube video he needs dad to come up and reset the tv & the ipad.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">However, the behavior, and the aloofness is just like a typical teen.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And in my mind it couldn't have come at a better time. I was worried about how he was going to handle the separation, and how he was going to handle living half the week in one place, and half the week in another. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And maybe him wanting to be more independent, more on his own is a defense mechanism. Maybe that is his way of dealing with this crazy new normal. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And if he wanted to stay in his room all evening and looked unhappy or angry I'd be concerned. However, it's not like that. He happily hangs with me for a few hours each evening, and then he happily retreats to his room to be alone for a few hours. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So I am thrilled!</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So what's that sense of fear & dread I mentioned earlier?</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Well, I've been living this autism lifestyle long enough to know that the bad times don't last forever, and the good times don't last forever. The other shoe always drops.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So, as easy as the king has made the transition of this separation on his mom and me, I fear for when he goes thru a rough patch... whether that be a rough patch with his behaviors, or a rough patch with his seizures.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I wrote in my <u><a href="http://www.theautismdaddy.com/2017/08/wifey-and-i-have-separated.html" target="_blank">separation blog post </a></u> </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>Maybe in a weird way our kid having autism and epilepsy kept us together longer than we would have if we had typical kid(s).</i></span></blockquote>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>I honestly think that the reason that this is happening now is that the king is finally in such a good place with his health and his personality, and his school situation.</i></span></blockquote>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i>He is in such a good place that we both have had a chance to breathe for the first time in YEARS. And we are looking around and realizing that we have a lot less in common than we did years ago.</i></span></blockquote>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">However, what that makes me think about is: what would it have been like being a 50/50 parent years back when he was extremely self injurious? Or when he was having multiple seizures per day? Would I or she be able to handle that by ourselves for half the week? </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Why am I looking backwards you ask? Well that's my way of looking forward. If (or when) he hits one of those rough patches again, will we be able to handle it solo? He's 14 now. He's already bigger than his mom, and he's getting closer to my size every month. How will we navigate that?</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I'm going to stop the fear & dread there. I don't want this blog post to focus on the what ifs & the negatives.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I want to end with the happiness & pride. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So let me end it by saying that I am so proud with how he has handled this whole transition.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And I am so happy that he became a typical teen who wants more independence at just the right time... </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">However, as happy as I am that he's entertaining himself in his room, there's some nights when I have to be that overbearing dad who wants to crash the party. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So I will sit on his bed with him watching Dora on the TV and Sesame on the ipad whether he likes it or not.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">My dream is for him to some day say, "cmon dad, you're embarrassing me. Get the hell out of my room, and go downstairs and watch your shows and leave me alone!"</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Ahhh.... A dad can dream can't he? </span><br />
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</script>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com2tag:blogger.com,1999:blog-5445812383851572581.post-87534337068638719572017-11-03T13:47:00.000-04:002018-02-01T12:45:09.748-05:00I Dropped the Ball Last Weekend!!!!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjovOvZ1PGjGBmJkLA4KSGuVPWehKG0WUq3BolP4jMFYZ9SSMIAyjdQ6mo2OHCfeP9XnwdCyIhz_UY9QVxMMFu8pyE3Edeocw46NQqLr5rgbMP9yX_bv5_7clqzEb1UMrlBYGjvOParfMM/s1600/abebb5f3-a8d8-481c-912e-5ed240a74b95.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="697" data-original-width="960" height="290" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjovOvZ1PGjGBmJkLA4KSGuVPWehKG0WUq3BolP4jMFYZ9SSMIAyjdQ6mo2OHCfeP9XnwdCyIhz_UY9QVxMMFu8pyE3Edeocw46NQqLr5rgbMP9yX_bv5_7clqzEb1UMrlBYGjvOParfMM/s400/abebb5f3-a8d8-481c-912e-5ed240a74b95.jpg" width="400" /></a></div><span style="font-size: x-large;"><br />
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<p></span> <span style="font-size: x-large;">I dropped the ball last weekend. For the first time since wife and I got separated over the summer I feel like I dropped the ball with something with regards to the king.</span><br />
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</span> <span style="font-size: x-large;">Last Saturday was a special-needs Halloween party that we have taken the king to for the past five or six years.</span><br />
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</span> <span style="font-size: x-large;">And for the last three - four years we used it as an excuse to get my mother and sister and her husband and kids together. We would all go to the Halloween party together and then go out to dinner or they would come back to our house for dinner.</span><br />
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</span> <span style="font-size: x-large;">And this year I completely missed the email announcement as to when the party was.</span><br />
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</span> <span style="font-size: x-large;">As I was bringing the king to his Saturday special-needs swim last weekend one of the moms said “will we see you at the Halloween party?”</span><br />
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</span> <span style="font-size: x-large;">And my reaction was “oh shit that’s today”</span><br />
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</span> <span style="background-color: rgba(255 , 255 , 255 , 0); font-size: x-large;">The party was from 11 AM to 3 PM and the King has back to back activities from 1030am till 12:45pm.</span><br />
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</span> <span style="font-size: x-large;">So after his music therapy I took him to the Halloween party without a costume and without any other family in tow.</span><br />
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</span> <span style="font-size: x-large;">He had an OK time but it was definitely a quieter outing then in years past and that gave me a sense of sadness and guilt.</span><br />
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</span> <span style="font-size: x-large;">And let me take a step back and say that it’s not like the king always had a completely amazing time at these Halloween parties. He had some good years and some ok years.</span><br />
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</span> <span style="font-size: x-large;">However, as I said before it was just a good excuse to get the family together revolving around a fun activity. And because I dropped the ball we had no plans after the Halloween party and so the king & I spent a quiet late afternoon/ evening at home alone. </span></span><br />
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</span></span> <span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: x-large;">The king seemed totally fine & happy about this. He was content to watch tv and/or play on his iPad for hours, but I felt guilty.</span> </span><br />
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</span> <span style="font-size: x-large;">So, basically, for the first time since the separation I feel like I dropped the ball. And my brain tells me it’s not gonna be the last time....</span><br />
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</span> <span style="font-size: x-large;">That's all I've got for today. Just a quickie blog post. </span><br />
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</script></span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com6tag:blogger.com,1999:blog-5445812383851572581.post-80146634052191644042017-09-14T16:35:00.001-04:002017-09-14T16:35:10.659-04:005 Lessons I Learned in my 1st Year as an SLP -- A Guest Post From My Niece Francesca <br />
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<span id="docs-internal-guid-652a9cad-820a-e43f-2484-0410c403326b"><span style="font-family: "cambria"; font-size: large;"><span style="white-space: pre-wrap;">Howdy, folks, ol' Autism Daddy here. Remember way back in January when I introduced you to my niece Francesca? She wrote a guest post for me called <a href="http://www.theautismdaddy.com/2017/01/tales-from-new-slp-guest-post-from-my.html" style="text-decoration-line: underline;" target="_blank">"Tales From a New SLP: A Guest Post from My Niece Francesca"</a> where she gave y'all a bit of her backstory as to why she wanted to become a Speech Language Pathologist working with kids with autism.</span></span></span></div>
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<span id="docs-internal-guid-652a9cad-820a-e43f-2484-0410c403326b"><span style="font-family: "cambria"; font-size: large;"><span style="white-space: pre-wrap;">Well, now she's got a year of full time work experience under her belt and she's back with her second guest blog post for me:</span></span></span><br />
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<span id="docs-internal-guid-652a9cad-820a-e43f-2484-0410c403326b"><span style="background-color: transparent; color: black; font-family: "cambria"; font-style: normal; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: x-large;"><u>5 Lessons I Learned in my First Year as a Speech Language Pathologist</u></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDexvbbOeEafl-0M6rq5ujDS2TyUeC0fLwL79fJQg7uLHnDth01Jn9VdP1SpylJNzAIjYyyUrKI91dEjOXUlJKEpRKuxgGNyy7oTXF6sVtjKm89Nfq3ZcIaSgEiwWhdVJox7kHud5PBcc/s1600/image_preview.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="301" data-original-width="400" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDexvbbOeEafl-0M6rq5ujDS2TyUeC0fLwL79fJQg7uLHnDth01Jn9VdP1SpylJNzAIjYyyUrKI91dEjOXUlJKEpRKuxgGNyy7oTXF6sVtjKm89Nfq3ZcIaSgEiwWhdVJox7kHud5PBcc/s400/image_preview.jpg" width="400" /></a></div>
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<span id="docs-internal-guid-652a9cad-820a-e43f-2484-0410c403326b"><span style="font-family: "cambria"; font-size: large;"><span style="white-space: pre-wrap;"><br />
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<span id="docs-internal-guid-652a9cad-820a-e43f-2484-0410c403326b"><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Hi again everyone! My name is Francesca and as you may remember from my previous post, I am Autism Daddy’s niece. Thank you all so much for your positive feedback on my last post! I am so excited to be writing another entry for you today. </span></span></span></div>
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<span id="docs-internal-guid-652a9cad-820a-e43f-2484-0410c403326b"><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">I just recently finished my first year as an “official” speech therapist and undoubtedly, this year has been the most education year yet. Since I am mainly working in early intervention (birth to three years old) I have had the opportunity to communicate with parents much more frequently than I had in the past. </span></span></span></div>
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<span id="docs-internal-guid-652a9cad-820a-e43f-2484-0410c403326b"><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">This has been eye opening. As a therapist who doesn’t yet have children, I look at special services through a different lens than parents do. In having many conversations with parents, I have learned that too many feel alone, confused, and often have to fight long battles for their child - especially at the early intervention level. </span></span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">This post is geared toward you, parents and caregivers. I hear and acknowledge your struggles. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Below I, talk about some of the most important lessons I’ve learned this year. I share this information with you in hopes it will provide insight and a little comfort for those who need it :) </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: x-large;"><b><u>1. If you are concerned with your child’s speech, get them evaluated. </u></b></span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">This is one of those things that specifically relates to my experience in early intervention, but I think it’s definitely worth mentioning. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">There have been countless times that I have started working with a child who is two a half/three years old and is barely communicating at all. In my initial interview, I always ask when parents/caregivers noticed their child may have a speech delay, and usually parents say around their first birthday but were told by professionals that they shouldn’t jump the gun or worry. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Ok, yes, there is totally the possibility that your child just needs a little more time to develop. But mom, dad… you know your kid better than anyone. If you have a gut feeling that your child may need some help, get some help. Ask for an evaluation or a referral. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">It could turn out that your child doesn’t need services at all, but if they do, at least they are starting as soon as they can. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">I can imagine how incredibly stressful evaluations can be for parents. Sometimes they are quick and easy and other time it seems like days before its over. Just know that this is a preliminary step to getting them what they need. Any services that are provided are only to benefit and never hurt your child.</span></span></div>
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<span style="font-size: large;"><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><u>TAKE HOME MESSAGE:</u></span><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"> Trust your instincts mom and dad. Get an evaluation. Or at the very least, call your doctor and ask if they could help you get a screening. If your child does need therapy, it’s okay. Take a deep breath and know that therapists are there to help and to provide you with techniques and activities to use at home. </span></span></div>
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<span style="font-family: "cambria"; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: x-large;"><u>2. Sensory needs are REAL. </u></span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">In my facility, I work very closely with other paraprofessionals, specifically physical therapists (PTs) and occupational therapists (OTs). On more than one occasion, I have heard that occupational therapists find it difficult to explain to skeptical parents why a 2-year-old child would needs services. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Very generally speaking, occupational therapy focuses on fine motor activities, such as drawing a line, holding a pencil, grasping items, building strength in extremities, etc., and sensory integration. Most parents are very aware of the fine motor aspect, but I would argue that sensory needs are equally as important. Research has shown that children may behave in deconstructive ways when they are disoriented, disorganized, and over-stimulated. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">I have had multiple experiences with parents who have told me “I’m not worried about OT” and want to focus exclusively on speech and language because that is the tangible issue. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">But…it is immensely important to determine WHY a child is having difficulty with speech and language. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">If your child is having difficulty controlling the sensory needs of their body, they may not be able to focus enough to comprehend and express language.</span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">I love love love my occupational therapists. For my children who have sensory needs (which is many of them,) I request that they have OT before coming to see me. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Why? Because it is AMAZING how much more productive our sessions can be once the OT has helped them organize and orient their bodies. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">I could go on for days about how important sensory integration is. But instead I’ll let the professionals speak for themselves.</span></span></div>
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<span style="font-size: large;"><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;">The amazing OTs I work with recommend </span><a href="http://asensorylife.com/index.html" style="text-decoration-line: none;"><span style="color: blue; font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;">THIS WEBSITE</span></a><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"> entitled “A Sensory Life.” It is written by occupational therapist Angie Voss. She provides free resources and also mentions specific sensory behaviors and reasons why your child may be exhibiting them. She has also written a book, which is available in PDF form, entitled </span><a href="https://calebsdoggy.files.wordpress.com/2013/09/2ndsensorysignals.pdf" style="text-decoration-line: none;"><span style="color: blue; font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;">Understanding Your Child’s Sensory Signals.</span></a><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"> </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;"><u>TAKE HOME MESSAGE:</u> Occupational therapy, specifically sensory integration, can be critical to your child’s holistic development. Sometimes these sensory needs are very obvious, other times they are very subtle. Either way, my advice is to keep calm and trust your OT. </span></span></div>
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<span style="font-family: "cambria"; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: x-large;"><u>3. Don’t dread the diagnosis</u></span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">This one is WAY easier said than done, I know. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Coming from an early intervention (EI) standpoint, I noticed that many of the parents I work with are afraid of their child needing services beyond 3-years-old for a couple of reasons</span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">One, because I’m sure there is always the hope that your child’s needs will resolve before school starts</span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Two, parents may not want their child to be “labeled”.</span></span></div>
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<span style="font-family: "cambria"; font-style: italic; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">So a little background…</span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Children who receive services through early intervention are part of a family oriented system. The child’s parents make the goals, monitor progress, voice concerns, etc. all on their own. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">When a child who receives early intervention services turns three years old and begins preschool, there is a transition from a “family” system to an “educational” system and new formal document (an Individual Education Plan or IEP) is created to reflect this. This document will typically state a “diagnosis” and goals that have been made by evaluators to help remediate a child’s difficulties. </span></span></div>
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<span style="font-size: large;"><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;">These diagnoses are </span><span style="font-family: "cambria"; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">very </span><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;">general. In Westchester county, there are only 13 diagnoses covered under the IDEA (individual with disabilities education act) that can appear on an IEP.</span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">These words on a formal document tend to make parents very nervous, especially when the IEP is first being created.</span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Parents – I totally understand and I feel your struggle. But just know that these diagnoses are more to help a child receive the services they need then a representation of your child’s disposition. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Diagnoses are not set in stone and can certainly be changed, revised, and revoked if necessary. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;"><u>TAKE HOME MESSAGE: </u>Diagnoses, no matter how heavy they are, do not define your child. As therapists, diagnoses are good information to know generally what a child may present with. But we are trained to treat their symptoms, not their diagnosis. Children are unique and their individual needs differ greatly, even just day-to-day. </span></span></div>
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<span style="font-family: "cambria"; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: x-large;"><u>4. Carryover is essential.</u></span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">No matter the age of your child, there should be some type of communication between a child’s parents and educational team. This is a fact I cannot stress enough! </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Children are like a sponge! They are constantly soaking up information and absorbing it to memory. It is absolutely essential that they are practicing learned skills at home for optimal carryover. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">I would love to think that I am so incredible that I am able to see a child twice a week for 45-minutes and make a huge life changing difference, but realistically, my job is to introduce tasks and provide you with tools and language in order to help you help your child. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">If your child’s educational team is not communicating with you on a semi-regular basis, reach out. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Ask how you can help with your child’s goals. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Tell them the positives and negatives of what your child is doing at home. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Send in a journal or send a text.</span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">I try to communicate with families at least once a month if not more, but sometimes I forget too, we’re only human! Parents, you should feel free to call, email, text, or use whatever method is agreed upon by both parties, to ask about your child’s progress. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;"><u>TAKE HOME MESSAGE: </u>The main goal of therapy is for your child to perform tasks that are practiced in sessions and have them complete these tasks independently at home. The quickest way for that outcome to be achieved is for him or her to practice at home as well. We should all be communicating with each other to make sure we are on the same page. I recommend talking to your child’s education team and deciding on an appropriate time to check in every two weeks/every month.</span></span></div>
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<span style="font-family: "cambria"; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: x-large;"><u>5. Different methods work for different children.</u></span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">Sometimes I feel like there is more controversy in therapy than there is in politics.</span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">I never discuss politics, religion, or the effectiveness of oral motor therapy for speech disorders. ☺ LOL </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">This is a joke, but really! </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">As therapists, we know parents do incredible research to find the method you feel would be the most beneficial to your child. I definitely take parents wants and needs into consideration, but there should be flexibility and open-mindedness on both ends. Sometimes theses research based approaches sound great on paper but may not integrate well with your child.</span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">For example, I am PROMPT (Prompts for Restructuring Oral Muscular Phonetic Targets) trained. I took the course, I drank the Kool Aid, and I use it all the time. But it is never my only approach because I believe there is value in variety. </span></span></div>
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<span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: large;">TAKE HOME MESSAGE: Have an open line of communication with your therapist. Tell them about what you’ve researched and ask them their opinion. Tell them this is something you want to try, but also be flexible with your expectations. </span></span></div>
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<span style="font-family: "cambria"; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;"><span style="font-size: x-large;">At the end of the day, the goal is to meet each child’s needs. </span></span></div>
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<span style="font-size: large;"><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;">To do this, we </span><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;">all</span><span style="font-family: "cambria"; vertical-align: baseline; white-space: pre-wrap;"> work together, through good times, bad times, and in between to reach our goals and make progress. And in those tough times, try to remember that even the smallest victories are still victories :) </span></span></div>
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</script></span></span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com11tag:blogger.com,1999:blog-5445812383851572581.post-10874668242219709062017-08-26T18:42:00.001-04:002017-08-26T18:42:04.980-04:00Wifey And I Have Separated... <script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script> <script>
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<span style="font-family: "arial"; font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif; white-space: pre-wrap;">I spoke at 3 different autism events back in July. At each of them I did my presentation “Top 20 Things Nobody Ever Told Me After My Kid Was Diagnosed”.
This is the presentation that I've been doing around the country the past few years.
And all three speeches went extremely well, but it was really, really difficult for me to get through them these last three times.
The reason? Well, number 2 on my Top 20 list is that “Your Marriage Can Survive & Get Stronger” and then I list 11 tips to a strong autism marriage.
And unfortunately this part of the presentation isn't true anymore.
You see wifey and I have separated. Yep, you read that right.
After 20 years of marriage, after 14 years of raising a kid, and after 12+ years of being autism parents, we have separated, and are working with a mediator on a divorce agreement.
So, if you’ve been wondering why I haven’t written much lately, now you know why. I’ve been dealing with this.
You don't need to all the details. It’s none of your business anyway. :-)
Just know that no one cheated on the other, no physical or mental abuse.
Let’s just say that we drifted apart. That’s the official story.
Again, I won’t give you all the details, but I gotta tell you that I didn’t see it coming. It came as a shock to me.
I have written tons of things on this blog and on my FB page saying what a great autism mom wifey is. And all of that is still completely and utterly true.
I have also written lots of things on this blog & FB page about how great our marriage is. And I thought that was true…it was true for me... but I wasn’t seeing things clearly. </span></span></div>
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<span style="font-family: "arial"; font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif; white-space: pre-wrap;">Wifey wasn’t happy. And according to her she hasn’t been happy for a long time.
Maybe in a weird way our kid having autism and epilepsy kept us together longer than we would have if we had typical kid(s).
I honestly think that the reason that this is happening now is that the king is finally in such a good place with his health and his personality, and his school situation.
He is in such a good place that we both have had a chance to breathe for the first time in YEARS. And we are looking around and realizing that we have a lot less in common than we did years ago. </span></span></div>
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<span style="font-family: "arial"; font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif; white-space: pre-wrap;">And I was fine with the status quo, wifey was not.
This process really started back in the winter, but it became more “official” a few weeks ago when we started living separately.
We have a 50/50 custody schedule with the king. So he’ll live with me half the time and wifey half the time.
That's pretty much it. That's really all I have to say about this situation right now.
And I'm only posting this now because I have more speaking gigs coming up, and after speaking at the events in July I realized how much my blog/ page means to people. And how my brutal honesty resonates with people. And for the past few months I haven't posted much because I wasn't ready to let you all in on this new reality in my life.
There was one part of me that wasn’t ready because a lot of our family & friends read the blog, and a lot of them don’t know yet. However, we are now living separately, so I think it’s time to let people know.
There was another part of me that was embarrassed to let you into this new part of my life because I spent so much time writing about what a great marriage I had.
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However, after speaking at those three events in July i had so many people come up to me afterwards and tell me how much my writing means to them and how me talking about the difficult times makes them feel less alone.
And those people coming up to me made me realize two things </span></span></span><div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="background-color: rgba(255 , 255 , 255 , 0);"> 1) that I was somewhat being a phony by still talking about how great my marriage is in my presentation </span>
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2) That It's my brutal honesty that got me here with the blog/page. So if I'm going to continue the blog/page honestly then I need to bring you all along for this new ride of my life moving forward.
And I know that lots of you will have questions. I'll answer the ones I feel like answering right now:
1) What about the king? How is he handling / gonna handle all of this?</span></span></div>
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That's the huge unknown. We've been talking to him about this for a while now. We assume he's grasping it and we are watching for signs of regression and aggression. And we will continue to watch for them now that he’s living in 2 places. </span></span></div>
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He's been pretty easy going and malleable lately. In a weird way this may be the best thing for him. The reason I say that is I think wifey and I will work extremely hard to make sure he has a great time when he is living with each of us. Maybe we've gotten lazy & complacent when it comes to engaging the king (I'm more guilty of this than wifey). However, now that we are living separately I see us both really going overboard making sure he's engaged and busy when he's living with each of us… I can't speak for wifey but for me maybe that's partially out of sense of guilt, and partially out of a sense of competition with wifey. Regardless of the reasons, the king will reap the benefits.
2) You said you were shocked by this separation. Where do you stand now?
Yes. I was shocked. I keep using the term “blindsided”. However after going to a few sessions of marriage counseling and a few sessions of individual therapy I've learned that in cases where there's no adultery or abuse one side is usually blindsided by the other. So yes I was angry for a while. It took me a few months to come to grips with what wifey wanted / needed. However, I've turned a corner and am excited to start this new chapter in my journey.
3) Do you guys still love each other? How amicable can things be.
We are trying to be as amicable as possible. As I mentioned earlier it took me longer to get on board because I didn’t see it coming. I had my good weeks and bad weeks. However, for the king’s sake we will be amicable.
I'd say that we still love each other. Yes. However maybe we’re not in love with each other anymore. Look, we are both 47 years old, We've been married 20 years and have been “together” for 24 years. That's a long ride. Maybe it's just taken its course.
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So that’s all I’m gonna say right now. Maybe I’ll give out more dribs & drabs of details moving forward, but i felt this was important to do now because I want to keep writing about my reality.
And moving forward, my reality is going to be me only being with the king half the time.
I want to write about how that feels. I want to write about being a part time single parent half the week. I want to write about how it feels to live alone the other half. I want to write about how it feels to be out to dinner with friends and have no one to check in with, no one to rush home to. I want to write about the ups and downs. I want to write about it all.
So I’m hoping that this blog post will open up the floodgates and get me writing & blogging & Facebooking again.
And the last thing that I will say is please do not bash wifey in the comments. I will not tolerate that. There is no bad guy here. It takes two to tango.
You don’t know what our marriage was like. I know on the blog I may come off as a superstar, but if you read between the lines, and read everything I write, you can easily see that I’m no picnic to live with. I can be extremely intense. I have lots of self doubt. I've written about how I went on antidepressants back in 2009. However, I probably should have been on them as far back as my 20s, way before the king was born. </span></span></div>
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<span style="font-family: "arial"; font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif; white-space: pre-wrap;">So as much as I felt blindsided and as unhappy as I was with how it all went down, let’s just say that wifey had her reasons...
So please no wifey bashing in the comments.
And also please don’t ask a lot of questions in the comments. This is all I want to say right now. So please don’t ask additional questions because I’m not going to answer them.</span></span></div>
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We’re going to have family & friends & coworkers reading this and gathering this news for the first time, so this is how I wish to present it at this time.
THANKS FOR READING AND THANKS AS ALWAYS FOR YOUR SUPPORT!
THE END
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Anonymoushttp://www.blogger.com/profile/16120932454938610096noreply@blogger.com67tag:blogger.com,1999:blog-5445812383851572581.post-58030244838537634722017-03-20T10:18:00.000-04:002017-04-10T15:35:47.371-04:00The Evolution Of Sesame's Julia<script type="text/javascript">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPIXmo6eM1QU9GTHXcxbD3ddyHJtxx_0nWaI4l-QcLSf0zjEIhAPG4S76lXygQpcBwGvo_oLFSqWcfTkzD-rh5pYaEd4WnqbPIr9nnPZrs71UmptQ9g9cAIu3HULQzANAuTCWnk_aOkg/s1600/frank+julia.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJPIXmo6eM1QU9GTHXcxbD3ddyHJtxx_0nWaI4l-QcLSf0zjEIhAPG4S76lXygQpcBwGvo_oLFSqWcfTkzD-rh5pYaEd4WnqbPIr9nnPZrs71UmptQ9g9cAIu3HULQzANAuTCWnk_aOkg/s320/frank+julia.jpg" width="259" /></a></div>
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<span style="font-size: x-large;">As many of you know I started this blog in 2011 and for a long time I was anonymous.</span></div>
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</span> <span style="font-size: x-large;">I came out in September of 2015 in a post called <a href="http://www.theautismdaddy.com/2015/09/my-name-is-frank-i-work-at-sesame.html" target="_blank">"My Name is Frank. I am Autism Daddy. I work at Sesame Street" </a> In that post I explained that I work at Sesame Street and revealed my true identity because I wanted to promote Sesame Street's autism initiative which I worked on.</span></div>
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<span style="font-size: x-large;">Then on October 21, 2015, on the day of our launch I wrote a post called <u><a href="http://www.theautismdaddy.com/2015/10/sesame-street-autism-my-2-worlds.html" target="_blank">"Sesame Street & Autism -My 2 Worlds Collide in an Amazing Way"</a></u> where I explained more about Sesame's autism initiative and walked you through all the different resources and videos that were available.</span><br />
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</span> <span style="font-size: x-large;">A day later, on I posted this on my Autism Daddy Facebook page, and I felt it was important for me to re-post and say again</span><br />
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<span style="color: #660000;">Today I'm going to continue to focus on <a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=169731464548" href="https://www.facebook.com/SesameStreet/" style="cursor: pointer; text-decoration: none;">Sesame Street</a>'s autism campaign <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/seeamazing?source=feed_text&story_id=1175899572437841" style="cursor: pointer; text-decoration: none;"><span class="_5afx" style="direction: ltr; font-family: inherit;"><span aria-label="hashtag" class="_58cl _5afz" style="font-family: inherit; unicode-bidi: isolate;">#</span><span class="_58cm" style="font-family: inherit;">seeamazing</span></span></a> that I am proud to say that I had a SMALL hand in developing.</span></div>
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<span style="color: #660000;">Because I have this amazing Autism Daddy platform with 124k followers I wrote that blog post yesterday to use my pulpit to help promote the crap out of the initiative. And the feedback from y'all has been overwhelmingly positive.</span></div>
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<span style="color: #660000;">However, I've seen some comments and shares that make it seem like I was the one leading & spearheading this whole autism initiative. And nothing could be farther from the truth.</span></div>
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<span style="color: #660000;">Small is the key word above folks... I had a small hand in it. The hard work & research that went into this initiative dates back 3 years.</span></div>
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<span style="color: #660000;">And along the way between the tons of folks here at <a class="profileLink" data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=13759741267" href="https://www.facebook.com/SesameWorkshop/" style="cursor: pointer; font-family: inherit; text-decoration: none;">Sesame Workshop</a> from all different departments, to the puppeteers, and writers & composers, and web designers, and artists, and animators, and the amazing filmmakers we hired, and all the kids and families that we featured there were literally HUNDREDS of people who worked on this initiative and played an important role in shaping it.</span></div>
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<span style="color: #660000;">I worked mainly on the video production side of things, and would give my opinion and feedback as an autism dad on other elements when asked. So I am humbly here to say that I am just a small cog in the wheel.</span></div>
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<span style="color: #660000;">A small cog that has an audience of 124k people, but still a small cog...:)</span></div>
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<span style="color: #660000;">So thanks for all the thanks! I will take them all in, and then try to pass them on to the appropriate people...</span></div>
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<span style="font-size: x-large;">Ok, so then in </span><span style="font-size: x-large;">March of 2016, I wrote another post called </span><u style="font-size: xx-large;"><a href="http://www.theautismdaddy.com/2016/03/sesame-street-autism-13-new-videos-emmy.html" target="_blank">"Sesame Street & Autism: 13 New Videos & an Emmy Nomination"</a></u><span style="font-size: x-large;"> when Sesame premiered some more autism content. </span></div>
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<span style="font-size: x-large;">And that brings us to today. Well yesterday actually. Yesterday <a href="http://www.cbsnews.com/videos/new-kid-on-the-street" target="_blank">"60 Minutes" ran a story about Sesame Street</a> and revealed the big news that we employees have been keeping a secret for 10+ months: that the autistic muppet character we introduced in October of 2015 was made into a physical muppet and would be joining the cast next month!!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhezhLQ3AldfWwdYUabDdGRwkCCeuD9_wqL5RO-tPpH7kfc6MzGkMcCLSYkQIDiV1HgoY-797AiIYykIc9h9j4PYeWkT8P8CQDjbUYyEPyY8MDEY4UA-rqCPAD3iarKyZ1LItHfg6-hU6U/s1600/SA_banner_notune_in_300x250.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhezhLQ3AldfWwdYUabDdGRwkCCeuD9_wqL5RO-tPpH7kfc6MzGkMcCLSYkQIDiV1HgoY-797AiIYykIc9h9j4PYeWkT8P8CQDjbUYyEPyY8MDEY4UA-rqCPAD3iarKyZ1LItHfg6-hU6U/s1600/SA_banner_notune_in_300x250.jpg" /></a></div>
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</span> <span style="font-size: x-large;">You see, Julia was introduced to the world back then only as an online digital storybook called </span><u style="font-size: xx-large;"><a href="http://autism.sesamestreet.org/storybook-we-are-amazing/" target="_blank">"We're Amazing 123"</a></u><span style="font-size: x-large;">. </span></div>
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</span> <span style="font-size: x-large;">The book was beautifully written by Leslie Kimmelman, herself an autism mom. Go like Leslie's Facebook page <u><a href="https://www.facebook.com/Leslie-Kimmelman-Writer-934307776589994/" target="_blank">here </a></u>and checkout her website <u><a href="http://lesliekimmelman.net/" target="_blank">here</a></u>.</span></div>
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<span style="font-size: x-large;">The book was one of many things we released in October 2015. I worked mostly on the films that were released during that launch. However, the media ate up the story of a new autistic muppet character and that was the lead in so much of the press coverage. However, many autism parents quickly dug thru our autism website and checked out all the resources. And while we got overwhelmingly positive reviews the one comment Sesame heard again and again from autism parents was that Julia just being in a storybook was not enough. Autism parents wanted to see her on the show.</span><br />
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<span style="font-size: x-large;">Fast forward to March of 2016 and we introduced an animation featuring Julia. This time Julia was voiced by a little girl on the spectrum. This got lots of positive feedback as well, but parents still wanted to see an actual Julia muppet.</span><br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/fI-Sk7_ykzU" width="560"></iframe><br />
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<span style="font-size: x-large;">So when script writing began for Season 47 a script introducing Julia was thrown into the mix. The script was assigned to Christine Ferraro, an accomplished Sesame writer for over 20 years. Chrissy is also an autism sister. She wrote the script, and as you can expect it went thru rounds and rounds of drafts and revisions and many autism experts weighed in on everything.</span></div>
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<div>
<span style="font-size: x-large;">While the script was being written the search was on to find a puppeteer to play Julia. Sesame was hoping to find someone with a close connection to autism. The search stopped in Arizona where Sesame found Stacey Gordon, a local puppet maker and puppeteer. Stacey is also an autism mom of a 14 year old son on the spectrum. </span></div>
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<span style="font-size: x-large;"><br />
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<span style="font-size: x-large;">And in April of last year the street story for the "Meet Julia" episode was shot. </span></div>
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<span style="font-size: x-large;">That Julia episode will air simultaneously on PBS & HBO on April 10th. </span><br />
<span style="font-size: x-large;"><br />
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<span style="font-size: x-large;">You can also view it here!!</span><br />
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<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">I am extremely proud and happy with how the episode turned out. However, I will tell you that I had very little to do with the production of this episode. I can't take any credit for how great it is. :) My job doesn't really entail working on the US show. So, while I worked on earlier parts of Sesame's autism initiative I did not work on the "Meet Julia" episode. </span></div>
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<span style="font-size: x-large;"><br />
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<span style="font-size: x-large;">However, after the episode was shot in April, I was given a small amount of money to produce 6 short online only segments featuring Julia with Abby & Elmo, as a way of introducing the world to Miss Julia in advance of the show airing. We tapped Christine Ferraro again to write them and in June of last year we shot these 6 short inserts. These segments were released to the world last night.</span></div>
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<span style="font-size: x-large;">I've put several of my favorites below.</span><br />
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</span> <br />
<b><u>Play Peek-A-Boo with Elmo & Julia</u></b><br />
Meet Julia, the newest friend on Sesame Street. Julia has autism. She also has a stuffed bunny named Fluffster! She and Elmo are different in some ways, but they have lots in common too. Elmo brings his doll David to play with Julia and Fluffster, and the four buddies play peek-a-boo.</div>
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/wCsVSHT3tpY" width="560"></iframe><br />
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<b><u>Abby Cadabby & Julia Sing Sunny Days</u></b><br />
Meet Julia, the newest friend on Sesame Street. Julia has autism. She’s also a really good singer and can remember all the words to lots of songs… like the favorite Sesame Street song, “Sunny Days.” Abby’s happy to join in!<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/M8QQRtA0hVA" width="560"></iframe><br />
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<b><u>Butterfly Flapping Fun | Julia & Abby Cadabby</u></b><br />
Meet Julia, the newest friend on Sesame Street. Julia has autism, and when she’s excited, sometimes she flaps her arms. Abby flaps her wings when she’s excited. Together, they’re the perfect pair to pretend to be butterflies…and then watch a real butterfly that lands in the garden!<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/wn-a10Ko_38" width="560"></iframe><br />
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<b><u>Twinkle Twinkle Little Star with Julia & Elmo</u></b><br />
Meet Julia, the newest friend on Sesame Street. Julia has autism. She also likes to sing and look up at the night sky. She and Elmo stargaze as they sing “Twinkle, Twinkle”and their star grows brighter and brighter.<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/rIlLpwgjmXA" width="560"></iframe><br />
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<span style="font-size: x-large;">So that's it in a nutshell. That's the evolution of the Julia character. You can see all of the autism content, the new stuff and the stuff from last year at <a href="http://www.sesamestreet.org/autism">www.sesamestreet.org/autism</a> </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">As for the Julia muppet, you, the autism community, the autism moms and dads, were a HUGE reason why she graduated from a storybook character to an actual muppet on the show!</span></div>
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<span style="font-size: x-large;"><br />
</span></div>
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<span style="font-size: x-large;">I hope seeing Julia on the show makes you happy and proud. A lot of work, effort, and care went into bringing her to life. While everything you see on screen might seem simple, every line that she spoke, every characteristic that Julia has, and every way that autism is described was discussed and debated and thought through by lots of different people.</span></div>
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<span style="font-size: x-large;">And as we are all well aware, if you've met one kid with autism, then you've met one kid with autism. So Julia is one kid with autism. The character doesn't perfectly represent my kid with autism. However, I can see pieces of my son in Julia and more importantly, the way the other muppets and humans interact with Julia and treat her with respect and as just one of the gang is exactly how I would want my kid to be treated. </span></div>
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<span style="font-size: x-large;">I think that's the most important take away from this whole initiative.</span></div>
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<span style="font-size: x-large;">Ok, that's all I got. Autism Daddy... OVER AND OUT!</span></div>
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<span style="font-size: x-large;">THE END</span></div>
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</script></span></span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com5tag:blogger.com,1999:blog-5445812383851572581.post-9538339005821926132017-01-13T17:06:00.000-05:002018-02-01T12:18:58.570-05:00Getting Back To Our Lives & Living Our Dreams<br />
<br />
<span style="font-size: x-large;">This might be a weird post and I might take a lot of flack for it. However I just had to get it out because it's something I've been thinking about for a long time. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">The King is now 13 years old and we love the school he's in. And he can be in that school conceivably for the next eight or nine years. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And, knock on wood, his seizures are on a somewhat predictable schedule that we can manage, and his behaviors have been in check. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">So basically everything at our house with regards to the king has been pretty mellow for the past year or so. So, in a weird way this past few months has felt like wifey and I getting back to our lives and living out our dreams. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And unfortunately, the king isn't much part of any of this. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">What do I mean by all of this? What is getting back to our lives mean, and what does living out our dreams mean?</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Well, let me talk about wifey first, and then I'll talk about me.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Wifey, has been a stay at home mom since the king was born. I don't think that was always going to be the plan. I think she would have gone back to work at some point had we had a "typical" child. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">However, the king was diagnosed quite early and when he was in early intervention our house was a revolving door of therapists and teachers. There was one stretch where he had almost 40 hours a week of therapy. So working then wasn't possible.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And as he got older he was quite a challenge behaviorally, and she would get frequent calls from his school to come in for this or pick him up because of that...so her working then didn't seem realistic.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And then just as we seemed to feel like we understood the autism world, he entered the epilepsy world when he had his first seizure in 2012 at the age of 9.... and she had lots of new doctor appointments to manage for the epilepsy, with still some crazy autism behaviors to deal with... remember his <u><a href="http://www.theautismdaddy.com/2011/11/frantic-email-to-kyles-school-re-breath.html" target="_blank">breath holding</a></u>?</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">All this to say that the idea of wifey having a job throughout all these years just didn't seem feasible</span><span style="font-size: x-large;">. I wrote more about this <u><a href="http://www.theautismdaddy.com/2016/08/why-my-wife-doesnt-have-job.html" target="_blank">HERE</a></u>. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">However, fast forward to now, and things are going pretty well around here lately, and we NEVER get calls from the school anymore. So, it's rea</span><span style="font-size: x-large;">lly been kinda boring for her during the day... </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">and of course boring is great, but still boring. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;"> So for the past few months, for the first time in a long time, s</span><span style="font-size: x-large;">he's been trying to figure out what she wants to do with her days while the king is in school.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">She's thinking about getting a part time job. She is thinking about getting back to her life. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">What kind of job? How many hours? How many days? All of that is unknown. And there's no timetable for this. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And we know full well that the king could have a set back next week with regards to epilepsy or autism or something else (god-forbid) and this concept of her having time / energy for a part time job could go completely out the window.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">However, just the idea that right now things are settled enough in our lives for her to even entertain the idea of getting a job is HUGE! It might not seem huge to many of y'all, but it is HUGE for us.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">So that's how she's thinking about getting back to her life...<br />
</span> <span style="font-size: x-large;">Now, how is wifey living her dreams, you ask?</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Well she has been rehearsing for the past year and now has three gigs under her belt as the lead singer of a rock 'n' roll cover band / bar band. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">It's something that she's always wanted to do but never pulled it off. And it is been great for her mentally and spiritually. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">She's the lead singer and she's accompanied by four middle-age dads. That's right my wife leaves me once a week to go rehearse with four other men. Am I the best husband or what? :-)</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">They've been rehearsing one weekend night per week, and now that they have 40+ songs under their belt they've been booking a few gigs at bars in our local area. And gigs at bars generally run from 10pm - 1am, just FYI... :-)</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">All of this has been a great outlet for her and a great release for her. And because of it she's exposed the king to a lot more different types of music because whenever she has a free moment she's singing / rehearsing... in the car, in the kitchen, in the living room, etc.</span><br />
<span style="font-size: x-large;"><br />
</span><span style="font-size: x-large;">So that's wifey's story...</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And me? How am I getting back to my life?</span><br />
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<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Well, as many of you know I work for Sesame Street and in my blog post when I announced that I worked at Sesame (read <u><a href="http://www.theautismdaddy.com/2015/09/my-name-is-frank-i-work-at-sesame.html" target="_blank">HERE</a></u>) I mentioned how I used to travel internationally before the king was diagnosed with autism. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">I really enjoyed traveling and working on Sesame Street's international co-productions around the world. </span><span style="font-size: x-large;">However, due to his extreme needs I stopped traveling internationally in 2006. It just didn't seem feasible to be half way around the world. If there was an emergency, what would I do?</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">However, at the end of January I will be making my first international trip for Sesame Street in 11 years! I will be traveling to Abu Dhabi in the United Arab Emirates to work with the local production team there as they begin production on the second season of Iftah Ya Simsim, our Arabic Sesame Street co-production.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">This was not an easy decision for me. It's the threat of seizures now that scares the sh-t out of me, but this opportunity presented itself, I was asked if I was interested in doing it, and wifey and I had a sit down to discuss it.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And she, with the help of a few co-workers, convinced me to put my toe back in those waters. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">I can't live in fear, I can't always continue to wait for the other shoe to drop. Odds are, nothing will happen during my time away. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">As one of my co-workers put it in an email to me.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="color: red; font-size: x-large;">"If you can swing being away that long in terms of your son, then Frank, you should do it. There won’t be an opportunity like this ...kind of ever. In looking back, you won’t remember that week as any different from any other in your life. But you will if you are in Abu Dhabi. </span><br />
<span style="color: red; font-size: x-large;"><br />
</span> <span style="color: red; font-size: x-large;">That’s how I look at these kinds of risks when I am confronted by them: will the experience contribute to my, I don’t know, knowledge of the world; the richness of my life? If yes, then I do what I can to overcome the unknown and do it."</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">So I said yes, and will be somewhat getting back to my life working on Sesame Street international co-productions. I will be leaving for Abu Dhabi on January 30th and returning on February 8th. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And I am extremely excited about the work, but I am also extremely freaked out about the flying, and the being away from home for 9 freaking days. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">My saving grace? When I used to travel years back, there was no social media, there wasn't really Facetime or Skype either. So, I like the fact that I can be reached on my iPhone at a moment's notice... and I already told wifey that I want to have a video call with the king each morning at about 7:45am before he gets on the school bus. I picked that time because that is literally the only time during the week that we will both be awake at the same time (7:45am in NY = 4:45pm in UAE).</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Anyway, I'm excited to be going, and excited to be taking all of you with me as well...excited to be writing blog posts, and posting pics & video on my AD FB page from Abu Dhabi!</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">So that's how I I'm getting back to my life..but how am I living out my dreams?</span><br />
</span><br />
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<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">This public speaking as Autism Daddy is me, in a weird way living out my dreams. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">When I was High School I was in school plays. When I was in college I was a disc jockey on our radio station, and hosted several programs on our college tv station.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">After I graduated, I almost took a stand-up comedy course, and had fleeting thoughts of pursuing that. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">However, my career, first at MTV, then at Sesame Street has become a "behind the scenes" career.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">The idea of writing this blog, and now especially me going around the country and speaking as Autism Daddy has scratched that itch that I used to have for performing on stage, or on screen.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Now, I never envisioned that I'd be talking about autism...but I'm just dealing with the hand that I was dealt and the comedic material I have in front of me. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">I try to make my presentations really fun and funny, somewhat like a stand-up comic would... and I get that same excitement before I take the stage at an autism conference that I used to get before a play in High School...</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">So, in a weird way, you could say that thanks to my son having autism...I am living out my dreams! (But as you know I'd trade it all in a heartbeat. I'd love to be living a more typical life...)</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Ok, so that's the story for wifey and me.... So what about your son you ask?</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Well, for better or worse, he's just kinda going with the flow you could say. On paper, you could say that he's pretty easy to parent these days. During a typical school week he is out of the house from 8am - 4pm. Wifey takes him to special needs activities after school on 3 of those weekdays. On Saturdays he's got special needs swim & music. But besides all that, he's just a tv / ipad junkie, and then he sleeps about 12 hours a night these days from about 7pm - 7am.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">So, because of all of that sleep time, and because of the fact that he's fairly mellow and goes with the flow these days, wifey and I have a lot of time on our hands... time to be in rock bands, time to write blog posts, time to travel, etc. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And sometimes, when wifey or I are off living our dreams (which normally we're not doing together by the way) I think that maybe we're being too selfish... that we should be engaging our son more... but he really does present as a lazy teenager who doesn't want to do anything.</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">And if he's gonna sleep 12 hours a day, and be ok with us living our dreams why shouldn't we take advantage of the situation...?</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">...especially because we pretty much know this good stretch is not gonna last forever...</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Sometimes I feel like we are racing against time...and time is not on our side. Maybe that's a morbid way of thinking but I feel that as the king gets older it's going to be more and more difficult for the wife and I to be selfish... I mean, in 9 years we're going to be caring for a 6 foot tall adult who's not in school anymore!</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">So, when the king needs more of our attention he knows that we will be there for him... but for know, while he's giving this the opportunity, I feel that</span><span style="font-size: x-large;"> wifey and I should cram in as much life & dreams as possible. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">She should rock out! I should travel! Maybe once in a while she & I can do some of this together! And maybe at some point his majesty will be at a place where he enjoys this stuff too, and can join us! I look forward to the day when I drag my 21 year old to a bar at 10pm at night to watch his mom sing (and I can buy him a beer)!</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Anyway, I'm going to end it there. This post is all over the place. Hope it makes sense... and hope I don't take too much heat... (actually I don't care) :-)</span><br />
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</span> <span style="font-size: x-large;">THE END</span><br />
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</script></span></span></span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com11tag:blogger.com,1999:blog-5445812383851572581.post-88371174440750713352017-01-01T11:56:00.000-05:002017-01-01T11:56:06.921-05:00Tales From a New SLP: A Guest Post from My Niece Francesca<script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script> <script>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirLatoaxYuhCLDEcm1Y0NFz7T8H2nTFVLLjY6iQN-gqpDdzaQrObEhy1x5xPS-sSrd1VNHWjugcl-Yl4TYZXpTT3MhG82rXLznTSte9SPORnjutZwDKeYZ-TUQv-EDvadI-AQ7iOWiUDY/s1600/FullSizeRender+%25281%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirLatoaxYuhCLDEcm1Y0NFz7T8H2nTFVLLjY6iQN-gqpDdzaQrObEhy1x5xPS-sSrd1VNHWjugcl-Yl4TYZXpTT3MhG82rXLznTSte9SPORnjutZwDKeYZ-TUQv-EDvadI-AQ7iOWiUDY/s400/FullSizeRender+%25281%2529.jpg" width="325" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Francesca at her undergrad graduation in 2014</td></tr>
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<span style="font-family: inherit; font-size: large;">Hey guys! Happy New Year!</span></div>
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<span style="font-family: inherit; font-size: large;">I am so excited to start the new year off with my first ever GUEST BLOG POST from my niece Francesca.</span></div>
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<span style="font-family: inherit; font-size: large;">Francesca (or Cesca for short) went to graduate school to be a speech language pathologist and just started her career. At Christmas dinner I overheard her talking to another family member about her experiences as a new SLP, dealing with little kids, and the expectations of their parents. </span></div>
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<span style="font-family: inherit; font-size: large;">And I was blown away! </span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">I mean I knew that she went to school for this, but I was really blown away by her knowledge and her insight. I thought to myself "wow, she really knows her sh-t!". </span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">And then it hit me! She should be writing guest posts on my blog! She can have some wisdom to share with some of you because she's a new SLP, but also because she's coming from a unique place of having autism in her world for over half her life </span><span style="font-size: large;">(thanks to the king).</span><br />
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<span style="font-family: inherit; font-size: large;">Anyway, late on Christmas Day I asked her if she'd be interested in writing some guest blog posts in 2017 and she jumped at the chance. </span></div>
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<span style="font-family: inherit; font-size: large;">For her first assignment I asked her to write an introductory post to tell you all a little more about herself, and to show how having the king in her life influenced her choices. So without further ado, please welcome my niece Francesca to the world of blogging and to the Autism Daddy family.</span></div>
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<span style="font-family: inherit; font-size: large;">Take it away Cesca!</span><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Hello Autism Daddy Family! </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">My name is Francesca. Autism Daddy is my uncle and I am SO EXCITED to do some guest blog posts for you! </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">For my first post I thought I’d tell you a bit more about me:</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">• I’m 24-years-old </span></span></span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">• I just graduated with my Master’s degree in Communication Sciences and Disorders in May 2016</span></span></span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">• I’m a new speech-language pathologist </span></span></span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #660000; font-size: large;">• I’m currently an early intervention (birth-to-three) service provider</span><span style="background-color: rgba(255, 255, 255, 0);"> </span></span></span></span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> -- Working in early intervention means I am usually servicing children pre-diagnosis. As a rule of thumb, children under 3-years-old do not receive a developmental diagnosis because they are still in a period of huge growth. </span></span></span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> -- My caseload currently includes 34 children (and counting!) who I see for individual therapy sessions. Some children are seen once a week while others three times a week. </span></span></span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> --Half of my day is spent at a facility where I treat with other professionals, including occupational therapists, physical therapists, and other speech pathologists. The other half of my day is spent traveling and doing homecare. </span></span></span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">• I’ve also worked with preschool, elementary, and high school populations. </span></span></span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">• And most importantly (in my opinion!) I’m the king’s cousin</span></span></span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Oh my cousin. The king! </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">MANY of the decisions I have made in my life all stem from my cousin. His life has had a huge impact on my professional life and personal opinions. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Let’s go back to the beginning shall we? </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I am extremely family oriented and have been since I was very young. So whenever I had a free moment, I spent it with loved ones. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I think I was about 12 years old when I started “helping out” with the king (so I guess he was under 2 years old) although in reality I was just along for the fun I knew we’d all have. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">We’d watch movies, eat lunch, get an Italian ice, go to the park… it was always an adventure. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Usually though, a small part of the day was spent in a therapy session. Whether it was at-home speech, an occupational/physical therapy gym, ABA - you name it, the king has had it. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> Back then it just looked like a visitor coming over to play. It wasn’t until I was a bit older that I began to understand the full situation. Between school, therapy, family events, therapeutic recreation, and other things that life throws at you, the king my aunt, and my uncle had a full schedule. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It definitely wasn’t easy for them. It’s sometimes tough to watch as a family member on the outside. You help out as best as you can when you are around, but at the end of the day when you take a step back out of the bubble, you realize just how easy your daily routine is in comparison. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">This may sound negative, but it's not meant to be. I say this because I feel it is crucial in understanding and being empathetic to the lives of those with special needs and their loved ones. No one likes to shed light on the negative side of disabilities, but lets face it – IT SUCKS. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Any disability! </span></span></span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I was diagnosed with juvenile diabetes when I was six years old. I love my life, but if someone gave me a “pancreas jump-start pill” I wouldn’t reject it, that’s for sure. </span></span></span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">No one wants to struggle or to see people they care about struggle. Some days it is harder to cope with then others. So please remember this before you roll your eyes at the kid having a meltdown at the restaurant (or something like that ) </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Fast forward to college, I was studying biology (HA!) and was looking for a job in the medical field when my aunt and uncle came to me with an opportunity for a job at a special needs recreation program for kids & adults with developmental disabilities in the area. The king was (and still is) part of this AMAZING rec program and my aunt loves it there. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I’m sure there are many posts in this blog that include this place. I ended up working there all throughout college and WOW… It changed my life! </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I worked with hundreds of individuals, young and old. Swimming instruction, gymnastics, movie night, book clubs, summer camp, I even got to work some programs with my cousin, which was really cool. </span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I was able to experience the good, the bad, and the ugly of physical, emotional, and developmental disabilities. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">However, if we’re being honest, I was basically getting paid to hang out! Because really that’s what it was. Yes, technically I was a “program aide,” but these men, women, and children provided so much more for me then I could have provided for them. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It was the best thing that could have happened to me. After I began working there, I switched my major to communication sciences and started on the path to becoming a speech pathologist. I got my bachelor's degree and moved on to get my masters.</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">While in graduate school, I became quite confident in my abilities when it came to speech therapy and I quickly learned that communication is one of the most important things we do as humans. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I love talking to people, listening to their stories, sharing my own related stories, learning from their language/dialect, hearing the uniqueness of their accents. Generally speaking, I love communication. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">We don’t really think about it, but imagine all the ways you need to communicate throughout the day. You text, you talk, you use gestures...it becomes second nature.</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Imagine those who don’t have the dexterity to text.</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Imagine those who know exactly what they want to say but they don’t have the ability to form sounds that make words and sentences.</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Imagine those who need to use the bathroom, but are unable to speak, sign, or gesture this. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I had a friend in grad school that was working on regaining speech with a 30-year-old man. This man was a son, a brother, an uncle. He had just graduated from college. One day he was walking, fell, and hit his head. He had such brain damage that he couldn’t move most of his body without tremors, let alone talk. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">As a medical professional, we are told “don’t bring your work home,” but being that my cousin is non-verbal, stories like this really hit home. Communicating your basic wants and needs is something we all take too much for granted. </span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">As a pediatric speech pathologist, this is the first thing I assess: can this child indicate that they want something, that they need something, that they like something, that they don’t like something. Usually, this ability is impaired in some way and I make it my priority to give them this ability before any other skill is learned.</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Ok, so getting back to my cousin. The king. After reading all this you could say that the king’s life has changed mine in ways that I could have never expected. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I truly believe that he exposed me to the world of holistic therapy and its benefits, but it is so much more then that. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Because of him, I am able to see through so many different lenses. The individual with special needs, parents, the family, and friends – each group has a unique outlook, a unique need. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">He has shown me that:</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">-- everyone deserves happiness, in whatever way suits them. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">-- everyone deserves to be treated with respect. </span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">-- everyone deserves to have a voice. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">He has taught me to not feel sorry for individuals who live a “non-typical” life, but to embrace the quirks in it. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Even more importantly, he has taught me empathy – for his own struggles, for the struggles of other individuals with special needs, and for the efforts of their parents, brothers, sisters, cousins, aunts, uncles, grandparents, etc. to insure that these basic privileges are not denied of them. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">He has taught me to walk a mile in someone’s shoes before judging their outlook. Through experiencing his life, I am more compassionate, more open minded, and more aware. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">These are all qualities that I hope to spread to others =)</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">With that being said, this was such a pleasure to write and I’m looking forward to being able to writing more! </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">In the future I hope to write blog posts about my experiences, both as a family member and as a service provider. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I’d like to tell some stories, answer questions, and give advice/tips to those who can find it useful. </span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
<div class="MsoNormal">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">As a therapist, I definitely have information to provide, but I have also had all the same feelings as any family member who loves someone with special needs. I know the joy in the good news, the sadness in the bad new, and the fear of the unknown. This empathy gives me a unique perspective that I would love to share with all of you!</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #660000; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">- Cesca</span></span></span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0); font-family: "arial" , "helvetica" , sans-serif; font-size: large;">---------------------------------------------------------------------------------</span></span></span><br />
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</span> <span style="font-family: inherit;"><span style="background-color: rgba(255 , 255 , 255 , 0); font-size: large;">Than</span><span style="background-color: rgba(255 , 255 , 255 , 0); font-size: large;">ks Francesca! Ok, this is Autism Daddy again. She's great, isn't </span><span style="background-color: rgba(255 , 255 , 255 , 0); font-size: large;">she! I gotta say that I made wifey read Cesca's post last night and she was crying 4 sentences in. I knew why, but I asked her why anyway. And wifey said:</span></span></span></span></div>
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</span> <span style="font-family: inherit;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">"My heart swells with pride... everything that I hoped to achieve by exposing </span><span style="background-color: rgba(255 , 255 , 255 , 0); font-size: large;">Cesca to his various therapies came true! I just wanted my niece to grow up to understand our son. So the fact that she has chosen to do this for a living surpasses my wildest dreams."</span></span></span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="background-color: rgba(255 , 255 , 255 , 0); font-size: large;"><span style="font-family: inherit;"><br />
</span></span> <span style="background-color: rgba(255 , 255 , 255 , 0); font-size: large;"><span style="font-family: inherit;">She almost had me crying too.</span></span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-family: inherit; font-size: large;">Anyway, I'm gonna end it there. But I hope Francesca will write a bunch of guest blog posts for me in 2017. And if you have topic ideas for her, or specific questions you'd like her to answer please let us know in the comments.</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-family: inherit; font-size: large;">Otherwise just like, comment, and share to welcome Francesca to the Autism Daddy family!</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-family: inherit; font-size: large;">Thanks and Happy New Year!</span></span></div>
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</script></span></span>Anonymoushttp://www.blogger.com/profile/16120932454938610096noreply@blogger.com8tag:blogger.com,1999:blog-5445812383851572581.post-11942914595447651662016-11-22T13:21:00.001-05:002016-11-22T15:57:39.933-05:00Autism Parents: Things Are Gonna Get Easier<script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script> <script>
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I wrote a post yesterday called <u><a href="http://www.theautismdaddy.com/2016/11/i-still-yearn-for-more-typical-life.html" target="_blank">"I Still Yearn For a Typical Life Sometimes"</a></u>. In it I talked about even though I’ve been living on Autism Avenue for over 11 years now with my 13 year old son, I still can get in a funk and get depressed "big league" :-) but in that post I wrote …<br />
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<blockquote class="tr_bq">
<span style="color: red;">But I swear I've been better these past few years... I rarely get in funks like this much any more. </span></blockquote>
<blockquote class="tr_bq">
<span style="color: red;">In fact at the beginning of this month I was going to write a post about how people always told me that things would get easier as my son got older, and I never believed them, but things do get easier... and living this special needs life does get easier the more years into it you are... </span></blockquote>
So this is that post. <br />
<br />
When I do my Autism Daddy speaking engagements around the country, inevitably during the Q&A session an autism mom will ask <i>“my son is bouncing off the walls from the minute he gets up in the morning to the minute he goes to bed at night. I don’t even have time for a shower most days… How do you and wifey do it? Does it get easier?”</i><br />
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And I usually ask<i> “how old is your kid?” </i>Nine times out of 10 the answer will be between the ages of 5 – 10 years old.<br />
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And I’ll say <i>“Yep those were the rough days in our house too. Thing were a lot crazier when he was that age. And people would tell me that it gets easier as our asd kids get older, and I didn’t believe them, but I’m here today to tell you that it is true.”</i><br />
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So I’m here today to explain that in further detail. And when I talk about things being easier, I am selfishly looking at this from the parenting perspective, not the kid perspective. So as you read this, please remember this is about being honest that being a parent of a kid with autism or any special needs can be difficult… but things do get easier…<br />
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I started this blog when the king was 7 years old, and boy he was a handful! And the blog post that best expresses what it was like living in our house back then is <u><a href="http://www.theautismdaddy.com/2011/08/things-overheard-at-my-house-on-typical.html" target="_blank">"50 Things Overheard at My Autism Household on a Typical Weekend"</a></u> <br />
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If you want to get a sense of what it’s like with a kid who is bouncing off the walls from the minute he wakes up to the minute he goes to sleep, I beg you to read that post. Back then it was truly “all hands on deck” parenting. If I got stuck in traffic on my way home from work I’d get a text from wifey saying<i> “how far away are you? I’m going batty over here pulling him off of the furniture!”</i><br />
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And if that wasn’t bad enough right after he turned 8, we entered what I call on the blog, “the summer of rage”. The summer of 2011, the king was filled with rage. Self-injurious behavior, hitting others… He was miserable for big stretches of every day and just seemed uncomfortable in his own skin. If you go back and read the blog and FB page from around that time, it was all pretty dark. I remember somebody commented <i>“don’t you post any positive stuff?”</i><br />
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But that was just what our lives were like back then. And people with older ASD kids would comment, <i>“I know it’s hard, but it does get easier as they get older…”</i><br />
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That summer of rage, the summer of 2011, when my son was 8 was probably the worst stretch we ever had as special needs parents. <br />
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</span> <span style="background-color: rgba(255 , 255 , 255 , 0);">Well fast forward 5+ years to now, and I can honestly say that things did get easier. We’ve got a pretty mellow 13 year old on our hands.<br />
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And these days, even when he’s not mellow and has some rage episodes, or zany behaviors, it’s not nearly as bad as it was years back.<br />
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What happened? How exactly did things get easier for him and for us as parents? I’m not entirely sure.<br />
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It wasn’t like we flipped a switch after that summer of rage and things were significantly better. Things got easier gradually. In fact, if I didn’t have this blog to look back and remember how insane my household used to be I’m not sure I’d notice how much easier things have gotten around here.<br />
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And let me say straight away, things didn’t get easier around here because my son made significant progress in his cognitive development. I know a few kids who were in my kid’s class when he was 6-7 years old, who have gone on to be somewhat mainstreamed or in integrated classrooms. So I’m sure their parents would say that their lives got easier because their kid made significant progress. So if you have a kid in that age range now, that hope is absolutely still out there for you… but that’s not what happened with our kid.<br />
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My son still has severe autism, is still nonverbal, and is still in the “low functioning” / some would say “most restrictive” school environment in an 8:1:1 classroom. He also now has epilepsy in addition to his autism. (he had his first seizure at age 9).<br />
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So again, what happened? Why did things get easier? Well there's 5 things that I think made the difference with our guy, and for our parenting sanity. Not saying this will work for everyone, or will apply to every kid, but this is why I think our lives are easier now…<br />
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</span> <span style="background-color: rgba(255 , 255 , 255 , 0);">1)<span class="Apple-tab-span" style="white-space: pre;"> </span>in the beginning of those crazy days the king wasn’t sleeping well and would be up and down all hours of the night. Wifey and I would watch him in shifts and I would go to work some mornings on 3-4 hours of sleep. Sleep is important for your kid, it’s important for your sanity, it’s important for your marriage. So somewhere in there we discovered the magic of melatonin, and it has helped his sleep immensely…. And you could say that it restored our sanity…<br />
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2)<span class="Apple-tab-span" style="white-space: pre;"> </span>During the summer of rage we bit the bullet and put the king on medications. As I said he truly seemed uncomfortable in his own skin. It was pathetic to watch. So with the help of a pediatric psychopharmacologist we got him on low doses of two scary old school meds and they helped him immensely. They got him out of the summer of rage, and back on the right track<br />
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3)<span class="Apple-tab-span" style="white-space: pre;"> </span>Time, maturity, slowing down, and being more comfortable in his own skin. I said earlier that the king maybe didn’t make much cognitive progress in the past few years… but the progress he did make has made parenting him a lot easier. He has just slowed down quite a bit. He has become quite a lazy teenager. Back during those rough times when he was younger I would have given my left arm to have him sit on the couch and watch a 30 minute tv show… but he was too hyper and would bounce off the walls and would walk from room to room while the tv was on. Now, we can’t get his lazy ass off the couch! He can watch a full 2 hour movie, often times while also playing other videos on his iPad :-) That’s the kind of progress we have in our house, but it does make parenting him a lot easier…<br />
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4)<span class="Apple-tab-span" style="white-space: pre;"> </span>This 4th one is maybe the most important one. I think wifey and I have learned to roll with the punches better. To try and live each day as it comes. And in a strange way, when the epilepsy and seizures entered the picture I think it made us not worry about the autism as much anymore. Once we also had epilepsy to fight, I think we gave up on expecting miraculous progress and maybe we slightly lowered our expectations on what our kid is capable of. All of that made the day to day stuff easier to deal with. I think wifey and I have also gotten better about being more selfish and taking care of ourselves, and making ourselves happy. I might write a separate blog post about this soon, but wifey is currently living out her dream of being a singer of a rock and roll cover band. And I’m enjoying my weird Autism Daddy celebrity status and am loving doing public speaking. All this to say that we are trying harder to make ourselves happier. And I think us both being happy and fulfilled makes us better parents… and I think that our son can feel that.<br />
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5)<span class="Apple-tab-span" style="white-space: pre;"> </span>I don’t know if wifey would agree with this one, but I think parenting our kid has gotten easier because for me because I am not comparing our situation to others as much. We are not around typical kids the king’s age as much, so we are not coming face to face with what “normal” parenting is like that often. We are just living in our little special needs bubble, and taking each day as it comes. Every once in a while I will come butt up against how different our lives are, and how much we are missing out on. And that still hurts a lot. See yesterday’s blog post for proof… but years ago when I would get in a funk it could last weeks, now it only lasts days… That’s progress for me! :-)<br />
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Anyway, that’s all I got. I’ve been meaning to write this post for weeks, because things are pretty easy and mellow in our house these days, and it can be quite boring in our house lately. In fact, sometimes 3 days will go by and I’lll realize that I haven’t posted anything on my Autism Daddy FB page and I’ll think to myself <i>“that’s because I’ve got nothing to update them on, no bad news, no good news, nothing new at all. It’s Thursday… He’s gone to school, come home, ate peanut butter for dinner, watched tv, went to sleep, got up and did the same for 3 days straight…”</i><br />
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And I guess you can say that being bored is progress for all of us… Years back during that all hands on deck summer of rage, it sure wasn’t boring! I would have loved to be bored back then!<br />
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Anyway, let me end this by reminding all the autism parents that <br />
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Ooh-oo child<br />
Things are gonna get easier<br />
Ooh-oo child<br />
Things'll get brighter<br />
Ooh-oo child<br />
Things are gonna get easier<br />
Ooh-oo child<br />
Things'll get brighter<br />
Some day, yeah<br />
We'll get it together and we'll get it all done<br />
<br />
(AUTISM DADDY DROPS THE MIKE)<br />
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<br />
I feel like I've gotten pretty good at this special needs parenting thing. I don't focus on what is missing from our lives as much anymore.<br />
<br />
Years back, in my mind I would constantly be comparing our lives with the lives of parents with typical kids around the king's age and I would get in a funk.<br />
<br />
Or I would see neurotypical kids my son's age interacting somewhere, maybe in a park, and I'd get in a funk.<br />
<br />
However, I've gotten much better about this over the years. Maybe that is because I just roll with the punches better or maybe there's just less typical kids the king's age that we hang out with so the differences of our lives is not in our face as much anymore.<br />
<br />
Every once in a while though I come face to face with just how much our lives are different, and I get hit over the head with the funk stick, and get myself in a funk. This has happened three times over the past three weeks.<br />
<br />
Before I get into the three events that got me in a funk, let me remind you that my wife and I have one child, a 13 year old son with severe, non-verbal autism and refractory epilepsy. <br />
<br />
Also let me say straight away, that I know that these are my issues, not my son's issues. He is happy. These are just issues that I have with wishing that I had a more typical son and was leading a more typical fatherhood. I'm not proud of having these feelings, but they are real, and I hurt sometimes, and I feel like writing about them in the hopes that it will make other parents feel less alone if they feel the same way.<br />
<br />
Ok, here goes...<br />
<br />
1) I had an Autism Daddy speaking gig in Plattsburgh, NY in early November. Nothing unusual about that. It was an event sponsored by the <a href="http://www.aaneny.org/news.html" style="text-decoration: underline;" target="_blank">Autism Alliance of Northeastern New York</a> and I was surrounded by autism parents and people who work with the ASD community. So what got me in a funk? Well Plattsburgh is where I went to college. So I was in town for about 24 hours and when I wasn't at the conference I was visiting my old college SUNY Plattsburgh. I was just aimlessly walking thru the student center, and peeking at the old dorm where I used to live. I was a Mass Communications major and was heavily involved in the college TV station. So while I was there I met up with an old professor and even spoke to the TV station students for a few minutes about my<br />
work at Sesame Street.<br />
<br />
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It was a great day for me in Plattsburgh. And on my ride home it hit me... HARD. <br />
<br />
I'm never going to send my kid off to college. <br />
<br />
Now I've known that for years and I've accepted that fact years ago...but being around all those 20 year olds (only 7 years older than my guy) and being around my old college town where I had so many great memories made the fact that my kid won't experience college life hit me like a ton of bricks.<br />
<br />
But again, this is more about me... My son seems happy. He doesn't seem to know what he's missing out on by not going away to college. So it's more that the wife and I are missing out on sending our kid off to college...<br />
<br />
My wife and I both went away to college (to different schools) and both had the times of our lives while away at school. And I think we both always envisioned our kid(s) going away to school and sharing all the stories about our experiences, and me maybe trying to influence their decision to choose dad's school. But we will never experience that. Plain and simple. And it really kinda sucks...<br />
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2) This past weekend, we dragged my son to a High School play. Wifey's sister's nephew is a sophomore in HS and was in his school's production of Hairspray. I wrote on my Autism Daddy Facebook page about how hard taking my son to school plays was in the past....<br />
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And I celebrated the fact that my son sat in his seat for almost the first 30 minutes...<br />
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So what got me in a funk? It was the first High School play that I went to while my son is almost HS age. He would be in 9th grade next year. <br />
<br />
And guess where wifey and I first met? In the Drama Club in our high school. We were both heavily involved in the school plays. And our experiences in the plays, choirs, talent shows back in the late 80's in HS shaped who we are today. We still sing songs and recite lines from our productions from almost 30 years ago. Many of our good friends today are people we performed with back in HS.<br />
<br />
And my son will never experience that...and I accepted that fact years ago...but watching those kids only 2-3 older than my son singing and acting their asses off on Saturday hit me like a freight train. <br />
<br />
Once again, this is my issue...not my son's... he is happy...<br />
<br />
However, if we had typical kid(s) I always envisioned them being the artsy type...being musical, and artistic, and having a great sense of showmanship... and I guess you could say that my son has a little bit of each of that... but it's safe to say that he'll never be in a HS play... Plain and simple... And it really kinda sucks...<br />
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3) This last one is kinda silly and small compared to the other two. On Sunday morning, I woke up still in a funk from the HS musical the night before. So I got up early... and volunteered to go to the supermarket to pick up some groceries. First I got my bagel and coffee, then I was jamming my tunes while walking around the store. I was slowly getting out of my funk when I saw this...<br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgahbmP4obyLlgL8vORYQeb_hMYm2uiSoToXuS7SAdLRq_utx8DOYO6XUYC1-_CXevwac-u4WCyBe8uMjO8OFwCfVFT37hBnzPkW0q2wu9A3CIa2JTzG18RB3nQmUtVIEU8ZaEStxqee1o/s1600/IMG_6992.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgahbmP4obyLlgL8vORYQeb_hMYm2uiSoToXuS7SAdLRq_utx8DOYO6XUYC1-_CXevwac-u4WCyBe8uMjO8OFwCfVFT37hBnzPkW0q2wu9A3CIa2JTzG18RB3nQmUtVIEU8ZaEStxqee1o/s400/IMG_6992.JPG" width="300" /></a></span></div>
<span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
<br />
Mad Magazine at the check-out counter. I haven't seen one of these in YEARS... And when I was <b><i><u>exactly </u></i></b>the king's age I LOVED Mad Magazine!! And if I had a typical kid and knew it still existed I'd probably be the dorky / embarrassing dad that would be trying to get his kid into Mad Magazine and all the dorky tv shows and movies that I loved when I was his age (Mel Brooks anyone?)... <br />
<br />
Again, this is my issue, not my son's... It's something that I need to come to grips with. And of course, this Mad Magazine one didn't hit me as hard as the other two. But plain and simple, it really kinda sucks that I can't share the passions I had when I was his age with my son. I know what some of you are gonna say about this one... "<i>buy him the Mad Magazine, read it to him, maybe he'll get something out of it, maybe you two will have a moment" </i> and all of that is true, but plain and simple wouldn't it be nice if I didn't have to wish for a single moment of acknowledgement, wouldn't it be nice if I could just share my bizarre sense of humor with my son without having to work at it...<br />
<br />
----<br />
<br />
That's all I got. Those are three things that got me in a funk over the past few weeks. But I swear I've been better these past few years... I rarely get in funks like this much any more.<br />
<br />
In fact at the beginning of this month I was going to write a post about how people always told me that things would get easier as my son got older, and I never believed them, but things do get easier... and living this special needs life does get easier the more years into it you are... <br />
<br />
...But the times of grief still come from time to time... there's no doubt about that... And there's still times when I wonder what parenting a typical child would be like...<br />
<br />
...and I think these feelings are completely natural, and will never go away...<br />
<br />
But things do get easier, I swear... I am still gonna write that post soon... Look for it in the next week or so, because things do get easier when you reach a place of acceptance...<br />
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Weird ending, but that's all I got...<br />
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THE END</span><br />
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</script></span></span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com10tag:blogger.com,1999:blog-5445812383851572581.post-1873399993829695912016-10-27T12:36:00.002-04:002016-10-28T07:42:50.276-04:00Our Lives Are NOT A Daily Struggle. We Can Take On More!<script type="text/javascript" async="" src="http://www.google-analytics.com/ga.js"></script><script type="text/javascript" async="" src="http://www.google-analytics.com/ga.js"></script><script type="text/javascript" async="" src="http://www.google-analytics.com/ga.js"></script><script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script> <script>
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<span style="font-size: x-large;">I've been meaning to write a post like this for a long time. And I'm not sure where it's gonna take me yet... Hopefully it makes sense.</span></div>
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<span style="font-size: x-large;">The reason I'm writing this post is ...I think that because I have this blog and because I write about all the ups and downs in our special needs lives that <b><i>many people</i></b> get the impression that our lives are a constant struggle... that every day we are living a high wire act of stress and emergencies... and nothing could be farther from the truth...</span></div>
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<span style="font-size: x-large;"><br>
</span></div>
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<span style="font-size: x-large;">And when I say many people, I mean many people who read the blog and don't know us... and some people who read the blog and kinda know us (like co-workers, old friends), and a few people who are close friends & family and should know that we aren't really that stressed on a daily basis... :-)</span></div>
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<span style="font-size: x-large;">I have two examples to share...of people thinking they have a good idea of what we are going through...</span></div>
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<span style="font-size: x-large;">1) A coworker was telling last week me how his wife went through quite a scary cancer scare a few weeks back. Surgery, a stay in the hospital, some real scary stuff. And as he was telling me the story he was looking at me like <i>"you know what I'm talking about"</i> and then he even said <i>"i'm sure you could appreciate what that was like"</i></span></div>
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<span style="font-size: x-large;">And I said <i>"no, none of the stuff we ever deal with for my son has ever been life or death... that must have been really scary... i have no idea what that must have been like"</i></span></div>
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<span style="font-size: x-large;"><br>
</span></div>
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<span style="font-size: x-large;">And it's true... We've been thru some scary procedures & surgeries with my son... but none of them were life or death... yes the seizures are scary, but most of the stress that comes with any hospital stay with the king is whether he is going to behave and be a good patient.</span></div>
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<span style="font-size: x-large;">2) The second example is even harder and more in line with what I'm talking about and what this post is about. My uncle passed away this April. He had lots of medical issues. He lived very close to me. In fact, you could say that I was the relative that lived the closest to him. And we were close emotionally too. We would see him every couple of months... he was in our lives.</span></div>
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<span style="font-size: x-large;">In the year before he died, my mom would tell me stories about how he had to go to a doctor appointment or even a trip to the ER and needed a ride, but asked a distant relative to drive him. And I would call him and say <i>"Unc, I'm here. I'm close. I get home from work at 6:30pm. You can always call me. I'd be happy to drive you."</i></span></div>
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<span style="font-size: x-large;">And I would always hear from him, <i>"but I didn't want to bother you... especially you... you've already got so much on your plate..."</i></span></div>
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<span style="font-size: x-large;">And I would think in my head? <i>Too much on my plate? What does he think goes on in this house? I get home from work at 6:30. The king is usually asleep by 8:30, and I'm sitting on my couch picking my nose and watching "Survivor" and "The Goldbergs" til 11pm.</i></span></div>
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<span style="font-size: x-large;">So those are my two examples...</span></div>
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<span style="font-size: x-large;">So let me say loud & clear, every day raising our autistic and epileptic 13 year old is not filled with stress & emergencies. Every day is not a high wire act. It can be really quiet and boring around here. </span></div>
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<span style="font-size: x-large;">And I think wifey would have plenty of her own examples. There's been times when she would say to people (relatives, close friends) <i>"if you ever need a sitter for your kids, I'd be happy to do it..."</i></span></div>
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<span style="font-size: x-large;">or even <i>"if you're ever in a bind and need someone to pick up your kids from school let me know..." </i> and they either yes her but never take her up on her offer... or they look at her like she has three heads, or they say something similar to what I hear, <i>"thanks, but that's ok... you've got enough on your plate..."</i></span></div>
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</span></div>
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<span style="font-size: x-large;">So let me say loud and clear that we both have free time... We both have more room on our plates... </span></div>
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<span style="font-size: x-large;">Our families know by know that when the really stressful times do come and when we do have too much on our plate we <b><u><i>always </i></u></b>let them know and ask for help. We are not shy about that... :-)</span></div>
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<span style="font-size: x-large;">However, for the most part, yes m</span><span style="font-size: x-large;">y son, can be quite a handful, and can have lots of challenging behaviors...and his weekly seizures can be scary as sh-t... but even at his worst we've got time on our hands to take on more, we've got room on our plates... </span></div>
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</span></div>
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<span style="font-size: x-large;">And since we started giving him melatonin back in 2009, he normally sleeps well at night, and now since seizure and seizure meds entered the party in 2012 he sometimes sleeps too much, so we really do have a lot of time on our hands.</span></div>
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</span></div>
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<span style="font-size: x-large;">And when he is sleeping for those 11-12 hours a night it's not like we are up at all hours searching the Internet and stressing about autism and epilepsy. We were never those kind of parents. Ok, maybe we were a little more like that when we were younger parents, with a younger kid, and this autism world was more new to us.</span></div>
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<span style="font-size: x-large;">However, now, for better or for worse, we </span><span style="font-size: x-large;">are sitting home watching tv at night when the king is asleep... and besides writing this blog I really don't think about autism and epilepsy that much. </span></div>
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<span style="font-size: x-large;">So, basically, now we live each day as it comes.... and each day is not a hire wire act of stress and emergencies..</span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: x-large;">And our lives are not a constant struggle. </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: x-large;">Yes, we have stress in our lives. Yes, I'm on antidepressants... but I've come to the realization recently that I'm quite positive that I'd be on antidepressants if we had typical kids... and perhaps I'd be equally stressed, but over typical parent stuff.... that's just my internal make up.</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: x-large;">I think that's all I want to say... not sure what the point of this post is... I think that my first example above about my friend with the wife with the cancer scare just brought this post to the forefront of my brain. The fact that he thought that because I had a a kid with special needs I would know what it's like to have a spouse go thru a cancer scare just made me realize that maybe people don't really know what our lives are like... Maybe me having this blog makes people think that we live and breathe autism and epilepsy and special needs issues 24/7... and nothing could be farther from the truth....</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: x-large;">And my 2nd example about my uncle... it just always kills me that some of our friends and relatives feel like they can't lean on us / depend on us more. It kills me that they think they can't call on us in case of an emergency because they think we've got too much on our plate... To think that my uncle needed a ride to the hospital and didn't think to call on me, and all I was doing was sitting home watching "Better Call Saul" is tragic.</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: x-large;">So I will say again, for the last time. Our lives are not a daily struggle. We have room on our plates.</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: x-large;">I'm sure as the wife and I age and in 10 years or so as our son grows into a 6 foot tall, 175 pound adult, and ages out of the school system our lives are going to be a lot more stressful and a lot more of a daily struggle / high wire act... so lean on us now while you can! Cuz we will definitely be leaning on you in 10 years when those crazy times come!</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: x-large;">That's all I've got...</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: x-large;">THE END</span></span></div>
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<span style="font-size: x-large;">It was on August 13, 2015 that I wrote a blog post called <u><a href="http://www.theautismdaddy.com/2015/08/kyle-didn-get-into-school-we-wanted-for.html" target="_blank">"My Son Didn't Get Into the School We Wanted for September" </a></u></span><script type="text/javascript">
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</span></div><div><span style="font-size: x-large;">And wifey and I were hurting. We found a school that we felt was a great fit, but due to lots of bureaucratic red tape we couldn't get him in, </span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">At that time back in August 2015 I wrote:</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><blockquote class="tr_bq"><span style="color: red;"><span style="font-size: x-large;">So we had to settle on his "safety school" which is a 30 mile, over a bridge, 30 minute drive away...</span> </span></blockquote><blockquote class="tr_bq"><span style="color: red;"><span style="font-size: x-large;">So for the first time EVER we're going to have to put the king on the school bus each day.</span> </span></blockquote><blockquote class="tr_bq"><span style="color: red; font-size: x-large;">And that is going to be a HUGE adjustment for all of us. And the king who likes to sleep late sometimes and sometimes has seizures in the mornings will have to get his butt up extra early to get on a school bus...</span></blockquote><blockquote class="tr_bq"><span style="color: red; font-size: x-large;">And don't get me wrong, this safety school really is a great school too... it's just not as great as the other one and much further away and so much more of a life change and adjustment for all of us...</span></blockquote><blockquote class="tr_bq"><span style="color: red; font-size: x-large;">Big bummer!!</span></blockquote></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">Well he's been in that "safety school" for way over a year now and we couldn't be happier! It is an excellent school for so many reasons...</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">But let's take this step by step...</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><b><u><span style="font-size: x-large;">The bus ride...</span></u></b></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">Yes, the bus ride is quite long. It takes us 30 minutes to drive there directly, but on the school bus with picking up two kids after my son it takes them an hour to drive there.</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">Because of his potential for seizures we fought to get the king his own nurse on the bus, and she is great. She's always texting wifey keeping her in the loop, giving her the "5 minute warning" each morning & afternoon so she knows exactly when the bus is coming. She also sends little pics of him on the bus...</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-33FYfs_JQ2AqTEWkmc0Qh7QSy1aGOr5w9JgvV48mHlLTP1EZ24jOUbfomCi4Wgb7NVTaIArRQ2R69p8BCtRm3HR6paHCAH5PSrqM2Y5wsXBLoYmjJOA9RNtMLmJJ0c0yzE7vi5g7bN8/s1600/bus.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="396" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-33FYfs_JQ2AqTEWkmc0Qh7QSy1aGOr5w9JgvV48mHlLTP1EZ24jOUbfomCi4Wgb7NVTaIArRQ2R69p8BCtRm3HR6paHCAH5PSrqM2Y5wsXBLoYmjJOA9RNtMLmJJ0c0yzE7vi5g7bN8/s400/bus.png" width="400" /></a></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">And all in all, the king loves the bus ride! He just chills, watching videos on his iPad, having snacks, etc. He gets frisky sometimes and hits or acts out, but it is pretty rare these days (knock on wood). He also never had a seizure on the bus so far (knock on wood)...</span></div><div><span style="font-size: x-large;"><br />
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</span></div><div><b><u><span style="font-size: x-large;">The swimming pool...</span></u></b></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">As many of you know the king loves swimming. Well this school has a heated indoor therapeutic swimming pool. Every class in the school goes once per week. However, when we mentioned to his teacher last year how much he loves the water and how we thought it would help calm him down for the school day she said "<i>oh, i'll write a report and we will make a case with your school district to get him in the pool 5 days a week"</i></span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">Knowing how hard it is to get anything thru the red tape at my school district I expected we'd have a battle on our hands, but by the end of the first month of the school year last year we got a note home saying <i>"send him to school in his bathing suit under his clothes each morning and he will go in the pool first thing."</i></span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">And so since last October we put the king on the bus in his bathing suit each day and he goes into his classroom to drop off his bags, and then spends the first 30-45 minutes of the school day in the pool!</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">What is better than that?! Isn't that freaking amazing?!</span></div><div><div></div></div><br />
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</span></div><div><span style="font-size: x-large;"><b><u>The teachers & staff</u></b></span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">So far, two school years in, and all the teachers and staff we have interacted with are awesome! The king had an amazing teacher last year, and her staff was so great. They made that classroom such a loving & welcoming environment. And we thought / hoped that he would be in that class again this year (and for several years to come).</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">We found out in late August that he was assigned to a different class with a different teacher and my instinct was to get upset and to fight it. However, wifey said <i>"let's just wait and see how it goes."</i></span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">And I guess we have an autistic kid who is ok with change, because even though I was freaking out he is handling it like a champ! </span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">I know schools rarely hear this, but sometimes they really know what they are doing! </span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">The classroom that he is in this year can possibly be considered slightly lower functioning, and the classroom is a bit more simplistic / less cluttered, and I think the lessons are a bit more on his level, and I think they might be a little stricter with him. </span></div><div><span style="font-size: x-large;">And I think he is enjoying it a bit more. The main reason I feel that way? He is napping less at school. He was napping upwards of 2 hours per day last year. This year they are cutting his naps off at the 20-30 minute mark and he is ok with it. And that is a good thing for many different reasons...</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">The other thing I love about this school? They "get" my kid. Both the teacher / staff last year and this year. <br />
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We went to the school open house last week as well and met with the teacher and staff. And these people have only had my kid in their class for a month and a half. And they already seem to get him. They know when he <i>can't</i> do something VS <i>doesn't want</i> to do something. They seem to talk to him appropriately, and push him when it's necessary. </span><span style="font-size: x-large;"> Basically, they get his personality, and I am so happy to see that. That is HUGE!</span><span style="font-size: x-large;"> </span><span style="font-size: x-large;"> </span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">So far this school year, he seems to be doing well, and is happy and not exhibiting too many problem behaviors ("PBs"). </span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">However, that is how the king usually works. He gives everyone a honeymoon period and then starts acting out in January. However, another thing that we love about this school is that they seem to be able to handle everything that my son or any kid can throw their way. At previous schools we would get calls on bad PB days or on multiple seizure days. Here they have 3-4 nurses on site and are dealing with multiply disabled kids all day so a few seizures doesn't freak them out. And PBs?! They can handle all sorts of PBs! We never get a call from them saying <i>"please come pick him up" </i></span></div><div><div></div></div><br />
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</i></span></div><div><span style="font-size: x-large;"><b><u>The atmosphere of the school / the parent involvement / the administration</u></b></span></div><div><span style="font-size: x-large;"><b><u><br />
</u></b></span></div><div><span style="font-size: x-large;">This might be the best thing about this school. It is a fairly large school with kids with all special needs from ages 5-21. And they have TONS of activities throughout the school year. The reason that I thought about writing this post is that wifey and I attended /volunteered at their "Fall Fest" last Friday. </span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCRU789DBiO-VEYHKXv68apQy3ThK2CHbuQSo-h-7Ey8SCN69PT_MPgQOdGB9Od-U_9W6E5paYDBtaDz5vLWK_8WINy-Q-3oc45b8efAB3EH-kirH3haddfE3k70JaFqwypym9l7xdzQg/s1600/14702374_10210501129705038_842916480534161176_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCRU789DBiO-VEYHKXv68apQy3ThK2CHbuQSo-h-7Ey8SCN69PT_MPgQOdGB9Od-U_9W6E5paYDBtaDz5vLWK_8WINy-Q-3oc45b8efAB3EH-kirH3haddfE3k70JaFqwypym9l7xdzQg/s400/14702374_10210501129705038_842916480534161176_n.jpg" width="400" /></a></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">Fall Fest consisted of the staff & PTA setting up Fall / Halloween related activities & prizes in the cafeteria. Throughout the school day classes entered and walked through the activities. This was maybe the 5th or 6th activity that I have attended. Halloween parties, Thanksgiving parade, Christmas show. Lots of parents attending. And the thing that sticks out the most at all these events? The joy. Both from the kids and the teachers and staff. Everybody just always seems so happy to be there. From the principal down to the custodians, just smiles all around.</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">You have no idea how important that is for a parent to see. After being at so many schools during his 13 years on earth it is so nice to be at a school that welcomes family involvement, that celebrates all holidays, and that is so joyful.</span></div><div><span style="font-size: x-large;"><br />
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</u></b></div><div><span style="font-size: x-large;"><b><u>That's about all I want to say. </u></b> </span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">Just a short blog post raving about my son's special needs school. So many people only write when they have bad things to say so i really wanted to write a post about how great his school is...</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">I'll leave you with this one image that encapsulates everything...</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><div><span style="font-size: x-large;">When my son came through the fall fest with his class he was accompanied by his 1:1 aide and his Occupational Therapist. The fall fest time must have come during his OT session time. So she accompanied him, and a few of the activities had an OT slant to them so she was helping him. It was great to see. And he had a real nice time.</span></div><div><span style="font-size: x-large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMART3FxL05NM5aEpFmDTDpW-Wa6M7t8A4-8guiApFILOKIC4Cbv_TaM_K4i82NIkxzH6DDNKrFOdi6B2aTKDdQt15BJPEN0Lgyqm17Yka593pHarzfZBG8jEb1auTuY5CpwWbdmDuXXU/s1600/IMG_5407.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMART3FxL05NM5aEpFmDTDpW-Wa6M7t8A4-8guiApFILOKIC4Cbv_TaM_K4i82NIkxzH6DDNKrFOdi6B2aTKDdQt15BJPEN0Lgyqm17Yka593pHarzfZBG8jEb1auTuY5CpwWbdmDuXXU/s400/IMG_5407.JPG" width="298" /></a></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">However, as he was leaving he was having a bit of a difficult time transitioning and his OT was massaging his back. It was just so nice to see that interaction!</span></div></div><div><span style="font-size: x-large;"><br />
</span></div><div><span style="font-size: x-large;">We are so happy that the king has the potential to be at this school until he is 21 years old. </span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">THE END</span></div><br />
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</script></span></span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com11tag:blogger.com,1999:blog-5445812383851572581.post-82273059880819216692016-10-04T14:28:00.000-04:002017-11-08T10:38:39.005-05:00What Doctors Don't Get About Autism Parents<br />
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<span style="font-size: large;"><i>(ORIGINALLY WRITTEN & PUBLISHED ON OCTOBER 4, 2016)</i>
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<div>
<span style="font-size: large;">Not sure what this post is gonna be about yet. And based on the title it might not be the post you were expecting.</span></div>
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</span></div>
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<span style="font-size: large;">The idea for this post has been in my head for a few months now...ever since I attended an autism conference a few months back.</span></div>
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</span></div>
<div>
<span style="font-size: large;">At that autism conference were a lot of bio-medical doctors and medical professionals who were recommending lots of different / alternative treatments for kids on the spectrum and suggesting lots of different / alternative medical tests for autism parents to consider running on their asd kids.</span></div>
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<span style="font-size: large;"><br />
</span></div>
<div>
<span style="font-size: large;">And this post is not about bashing any of those treatments. I've written before how we tried many of these treatments years back and...</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;"></span><br />
<span style="font-size: large;">I believe that some of those treatments work! When people rave about the amazing improvements in their kid after ___ treatment I don't think they are lying... and I am truly THRILLED for them. They just didn't work for my kid. I covered my take on biomedical in two posts that you can read <u><a href="http://www.theautismdaddy.com/2012/03/letter-to-parents-of-low-functioning.html" target="_blank">HERE </a></u>& <u><a href="http://www.theautismdaddy.com/2016/03/why-autism-supermoms-make-me-feel-bad.html" target="_blank">HERE</a></u></span><br />
<div>
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<span style="font-size: large;"><br />
</span></div>
<div>
<span style="font-size: large;">Anyway, s</span><span style="font-size: large;">o this post is not about bashing any of those treatments. This post is just about the look I saw in some of those parents' eyes at that autism conference. How overwhelmed they looked. Some of them were at this conference for several days and their heads were spinning.</span></div>
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<span style="font-size: large;"><br />
</span></div>
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<span style="font-size: large;">And I know that feeling. I remember feeling that way.</span></div>
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</span></div>
<div>
<span style="font-size: large;">And it's not a feeling of disillusionment. It's a feeling of hope.... <i>"if it worked for that kid maybe it will work for mine"</i></span></div>
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<span style="font-size: large;"><br />
</span></div>
<div>
<span style="font-size: large;">but it's also a feeling of<i> "where the F do I start? Which treatment should I start with?"</i></span></div>
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<span style="font-size: large;"><br />
</span></div>
<div>
<span style="font-size: large;">And it's also a feeling of <i>"How the F am I going to be able to afford this?"</i></span></div>
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<span style="font-size: large;"><br />
</span></div>
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<span style="font-size: large;">But it's also a feeling of <i>"how am I going to get my kid to do this or take this or sit still for this."</i></span></div>
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<span style="font-size: large;"><br />
</span></div>
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<span style="font-size: large;"><b><i>That's </i></b>what this post is all about.</span></div>
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</span></div>
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<span style="font-size: large;">This post is about the fact that most doctors don't have a freaking clue how difficult some of these <b>simple </b>things are for our kids. </span></div>
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</span></div>
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<span style="font-size: large;">One bio-medical protocol required parents to bring their kids in for blood work every 3-4 weeks or so. Simple enough, right?</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">No. Not simple for my kid at all.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Do you know how hard it used to be for my autistic kid to sit thru blood-work. Do you know how many phlebotomists (the folks who draw the blood) he's kicked. Do you know how many times we've put off getting blood work done because wifey or I weren't in the right mental mindset to take that on? </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I would book the blood-work appointment three days in advance and then stress about it for three days... and then if my son gave any indication of having a rough morning I'd cancel it last minute. </span><br />
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<span style="font-size: large;"><br />
</span> <span style="font-size: large;">This holds true for any kind of needles. Needles for drawing blood and needles for injecting something (like vitamin B12 injections). They can all be torturous for our kids.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Now I know many doctors would think we autism parents must be crazy for shying away from even <b><i>trying </i></b>a new treatment because of our kids fear of needles...</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">But do these doctors have any freaking clue how difficult needles can be for our kids? Do they realize that it's many times a two parent job? That means that still to this day, any time my kid needs to get blood drawn or an injection done I need to take time off from work so that he can sit on my lap while I pin his hands down, and wifey holds his legs down so nobody gets kicked. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Most doctors don't have a clue what goes in to the planning for even the simplest thing.... </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Taking vitamins? Supplements? Any pill? I didn't think that my kid would ever get the concept of take this pill and wash it down with that water.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And he still doesn't get that concept. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">One of the greatest days of my autism parenting life is the day that I realized that if you put a pill on a spoon with some baby food he would swallow it down no mater the size... stuff on spoons he will swallow...</span><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3zJBT5a7J4smBILkqyc75jFmATjdEs4JAAesFZhSCczmntykZ5OVse0i2x6Wo6SBi8fUxtkgc4irj7Hl6Q8Cg2JW5SI1C1bdNjDsqqIR74rV36ZPvEyLtuY5fU9aRTRP5KsugSPaeNbs/s1600/pill.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3zJBT5a7J4smBILkqyc75jFmATjdEs4JAAesFZhSCczmntykZ5OVse0i2x6Wo6SBi8fUxtkgc4irj7Hl6Q8Cg2JW5SI1C1bdNjDsqqIR74rV36ZPvEyLtuY5fU9aRTRP5KsugSPaeNbs/s400/pill.jpg" width="400" /></a></span></div>
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-size: large;"><br />
</span> <span style="font-size: large;">but that's just my kid... many other kids on the spectrum can't or won't take pills... or if they will it's a DAILY BATTLE.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">But many doctors don't have a freaking clue how hard something as simple as <i>"have then take this pill twice a day" </i>can be for our kids...</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And of and it's not just many of the autism doctors who are pushing the bio-medical treatments that don't have a freaking clue... I'm not singling them out in their clueless-ness of the realities of being an autism parent...</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">it's many of the regular doctors as well. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">A couple of months back we thought my son broke his finger. The doctor recommended an xray to make sure... and my instinct was to say<i> "nah, let's just wait and see what happens"</i></span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">My doctor must have been thinking. <i>"What they hell is wrong with this parent? Wouldn't he want to know immediately if his kid has a broken bone?"</i></span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Of course I would... but does this doctor realize that taking my kid to get an xray requires us to give him benadrl and melatonin in the middle of the day so that hopefully he will be sleepy enough to keep his hand still long enough to get an xray.</span><br />
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<span style="font-size: large;"><br />
</span> <span style="font-size: large;">years back they thought my kid was going thru advanced puberty and one doc recommended he get a special "bone age xray".</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;"><i>"What does that entail doc?</i></span><br />
<span style="font-size: large;"><i><br />
</i></span> <span style="font-size: large;"><i>"Well he just needs to keep his hand perfectly still for 3 minutes"</i></span><br />
<span style="font-size: large;"><i><br />
</i></span> <span style="font-size: large;"><i>"Yeah that's not possible... at least not while my kid is awake"</i></span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">So we put off the test until wifey and I were both mentally prepared enough to handle it.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Then we stuffed him full of benadryl and melatonin and waited for our zombie boy to be completely sleep enough to get his hand onto the table for 3 minutes straight. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I think we were there for over 3 hours. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I could go on & on. Most doctors don't have a freaking clue what we have to deal with</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Forget about bringing my kid to the dentist. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">We gave up on brushing our kids teeth years ago... literally just gave up... he won't let us in and he's now too strong to fight... </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">So every year or so we have to schedule an appointment with a special needs dentist, and he/she would do the cleanings / xrays / fillings in a hospital setting under general anesthesia.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">That's right... tooth brushing was so difficult for our kid that instead of trying to brush his teeth everyday wifey and I decided that the concept of putting our kid under general anesthesia once a year was the less stressful move.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And that's not to say that it's not stressful. This is one case where my son isn't stressed out at all. In the days and weeks leading up to the dentist hospital visit, he is fine...probably because he's oblivious that it is coming up... but wifey and I are stressing and have to get ourselves in the right mental mindset for this appointment.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I have to take more time off of work. And on the morning of, wifey and I are a barrel of nerves... but the king is pretty ok with it.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">At the hospital they always try to give him a liquid sedative before the anesthesia and I tell them <i>"he will spit that out... do you have a pill with some baby food instead?"</i> :-)</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">There was one time when he went in for his dental work. It was around the same time that we were supposed to get that bone age xray test done... I think he was also overdue for some blood-work and was also overdue for an overnight EEG.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And once he was under the anesthesia and laying there peacefully I said to the doctors and nurses:</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;"><i>"While he's under anesthesia can we also get the bone age xray done, and the blood-work done, maybe clip his nails, and give him a haircut too while he's under?"</i></span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I was serious about the first two and somewhat kidding about the other two, but alas they couldn't do anything else while he was under...</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">...and these doctors probably thought I was crazy for asking... but that's because most doctors don't have a freaking clue!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">That's all I've got for now... I'm curious if you guys have similar issues with your kids and the doctors in your lives... maybe it's more of a severe autism issue or a non verbal autism issue? </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Looking forward to hearing your thoughts.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">THE END</span><br />
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<br />
<span style="font-size: large;">I've been meaning to write this post for a long time now. It's about the strange balance and the weird trade-offs you have to make in your mind as a parent of a kid with both autism and epilepsy.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">The idea for this post came about four weeks ago when we were on vacation in Lake George New York.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I think it was the last day of our week long vacation and we were eating breakfast at this restaurant that we have been to three or four times over the week.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And my son was starting to act out in the restaurant.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Let me take a step back and say that as autism parents for 13 years now my wife and I are well trained at restaurant situations.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">So much so that as the hostess leads us to our table at any restaurant both of us already doing calculations in our head as to which side would be the best side for the king to sit on, who should sit next to him, do we need to move all of the ketchup and salt & pepper shakers off the table, should we ask for a booth instead of the table they put us at, etc. etc.</span><br />
<span style="font-size: large;"><br />
</span><span style="font-size: large;">At this restaurant, on this particular day, they gave us a pretty perfect table for our situation. :-) A booth where there was no booth behind his Majesty so there was nobody for him to mess with or potentially disturb.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">However, there was a couple of paintings on the wall to the Kings right.</span><br />
<div>
</div>
<br />
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<span style="font-size: large;"><br />
</span> <span style="font-size: large;"><br />
</span> <span style="font-size: large;"><br />
</span> <span style="font-size: large;">And throughout the breakfast between bites of pancakes and bacon his Majesty was trying to happily take the paintings off the wall.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And wifey and I were trying to redirect him back to his chocolate milk and his shows on his iPad.</span><br />
<span style="font-size: large;"><br />
</span><span style="font-size: large;">After maybe the fifth or sixth time of him reaching for the painting wifey said exasperated <i>"dude come on, leave that thing alone!"</i></span><br />
<span style="font-size: large;"><br />
</span><span style="font-size: large;">And then she stopped and continued by saying</span><br />
<span style="font-size: large;"><br />
</span><i><span style="font-size: large;">"but it is good to see some of the feisty kid back. It's good to see you with a lot of energy and trying to push mommy and daddy's buttons"</span></i> <span style="font-size: large;"><br />
</span><span style="font-size: large;">And that right there is the weird balance between autism and epilepsy.</span><br />
<span style="font-size: large;"><br />
</span><span style="font-size: large;">Before epilepsy, when we were dealing dealing with <b>just </b>a kid with autism we basically had a tornado and in our midst.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">A high energy kid, bouncing off the walls, who can't sit still, with lots of stims and behaviors, and getting into lots of potentially dangerous behaviors... just your typical flappy autistic kid</span><br />
</span><br />
<div>
</div>
<br />
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<br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;"><br />
</span><span style="font-size: large;">That's pretty much what we had before epilepsy came into our lives.</span><br />
<span style="font-size: large;"><br />
</span><span style="font-size: large;">Epilepsy joined the party in 2012 and a lot has changed with my son over the years a bit. In some ways for the better. The king is a lot more mellow since he started having seizures. That could be because a lot of the old-school anti-seizure meds are also mood altering meds that can mellow our kids out which can be a good thing</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">However, on this vacation in particular what we had was a kid who was having a seizure pretty much every four or five days. A kid who was on two anti-seizure medicines as well as the new addition of medical marijuana.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And so on this vacation we didn't just have a mellow kid, we had a kid who was sleeping way too much... and when he was awake, I hate to admit it but he was a little "zombie like". And I know this won't be popular but I blame the medical marijuana for that.</span><br />
<span style="font-size: large;"><br />
</span><span style="font-size: large;">And when your kid is sleeping 12 hours a night, and then <b><i>still </i></b>napping two hours a day, and then kind of "zombie like" when he is awake you long for the days when he's pulling paintings off the walls in a restaurant.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And so towards the middle of that vacation we made an executive decision to pull the plug on the medical marijuana. (Holy crap we still haven't told his doctor about that yet!)</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And slowly but surely throughout that week he got some of his energy level back and we got some of that fesisty kid came back and some of his bad behaviors back too. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Yay for bad behaviors!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And by the end of the week he was back to trying to pull paintings off of the walls!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Yay!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">That's about all I've got for this one. This is just a short blog post that's been rolling around in my head since wifey made that comment about 3 weeks back!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I've written a little about this before, about the weird trade offs you have to make in your mind as a special needs parent.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And how you sometimes long for the crazy days, especially if the crazy days was typical behavior for your kid and showed more of your kid's personality, or if during those crazy days your kid was healthier.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Anyway, that's all I've got right now. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And since school started we've got an even better balance going right now. He's awake a lot more, he's got good energy levels, and he's very happy, and he's only having a seizure every 7-8 days. Yay, progress!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">So right now we're not wishing for a return of the feisty kid with bad behaviors... but knowing the king's ups & downs, when he has another down turn in a few months I'm sure we will be.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I'm sure in a few months we will be saying...</span><br />
<span style="font-size: large;"><i>"Pull those paintings off the wall in the restaurant you crazy nut, be feisty... you've got autism, that's what you're supposed to do!"</i></span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">THE END</span><br />
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</span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com0tag:blogger.com,1999:blog-5445812383851572581.post-44760955969121472662016-09-23T12:19:00.002-04:002016-12-28T14:22:15.661-05:00The Strange Balance Between Autism & Epilepsy in My Kid's Life<script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script> <script>
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<i><br /></i>
<span style="font-size: large;"><i>(originally written & published on September 23, 2016)</i></span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">I've been meaning to write this post for a long time now. It's about the strange balance and the weird trade-offs you have to make in your mind as a parent of a kid with both autism and epilepsy.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">The idea for this post came about three weeks ago when we were on vacation in Lake George New York.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I think it was the last day of our week long vacation and we were eating breakfast at this restaurant that we have been to three or four times over the week.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And my son was starting to act out in the restaurant.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Let me take a step back and say that as autism parents for 13 years now my wife and I are well trained at restaurant situations.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">So much so that as the hostess leads us to our table at any restaurant both of us already doing calculations in our head as to which side would be the best side for the king to sit on, who should sit next to him, do we need to move all of the ketchup and salt & pepper shakers off the table, should we ask for a booth instead of the table they put us at, etc. etc.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">At this restaurant, on this particular day, they gave us a pretty perfect table for our situation. :-) A booth where there was no booth behind his Majesty so there was nobody for him to mess with or potentially disturb.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">However, there was a couple of paintings on the wall to the Kings right.</span><br />
<div>
</div>
<br />
<span style="background-color: rgba(255 , 255 , 255 , 0);"><ins class="adsbygoogle" data-ad-client="ca-pub-3107489986272676" data-ad-format="auto" data-ad-slot="7711336709" style="display: block;"></ins><br />
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<br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;"><br />
</span> <span style="font-size: large;"><br />
</span> <span style="font-size: large;">And throughout the breakfast between bites of pancakes and bacon his Majesty was trying to happily take the paintings off the wall.</span><br /><span style="font-size: large;"><br />
</span> <span style="font-size: large;">And wifey and I were trying to redirect him back to his chocolate milk and his shows on his iPad.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">After maybe the fifth or sixth time of him reaching for the painting wifey said exasperated <i>"dude come on, leave that thing alone!"</i></span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">And then she stopped and continued by saying</span><br />
<span style="font-size: large;"><br /></span><i><span style="font-size: large;">"but it is good to see some of the feisty kid back. It's good to see you with a lot of energy and trying to push mommy and daddy's buttons"</span></i>
<span style="font-size: large;"><br /></span><span style="font-size: large;">And that right there is the weird balance between autism and epilepsy.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Before epilepsy, when we were dealing dealing with <b>just </b>a kid with autism we basically had a tornado and in our midst.</span><br /><span style="font-size: large;"><br />
</span> <span style="font-size: large;">A high energy kid, bouncing off the walls, who can't sit still, with lots of stims and behaviors, and getting into lots of potentially dangerous behaviors... just your typical flappy autistic kid</span><br />
</span><br />
<div>
</div>
<br />
<span style="background-color: rgba(255 , 255 , 255 , 0);"><ins class="adsbygoogle" data-ad-client="ca-pub-3107489986272676" data-ad-format="auto" data-ad-slot="7711336709" style="display: block;"></ins><br />
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<br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;"><br /></span><span style="font-size: large;">That's pretty much what we had before epilepsy came into our lives.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">Epilepsy joined the party in 2012 and a lot has changed with my son over the years a bit. In some ways for the better. The king is a lot more mellow since he started having seizures. That could be because a lot of the old-school anti-seizure meds are also mood altering meds that can mellow our kids out which can be a good thing</span><br /><span style="font-size: large;"><br />
</span> <span style="font-size: large;">However, on this vacation in particular what we had was a kid who was having a seizure pretty much every four or five days. A kid who was on two anti-seizure medicines as well as the new addition of medical marijuana.</span><br /><span style="font-size: large;"><br />
</span> <span style="font-size: large;">And so on this vacation we didn't just have a mellow kid, we had a kid who was sleeping way too much... and when he was awake, I hate to admit it but he was a little "zombie like". And I know this won't be popular but I blame the medical marijuana for that.</span><br />
<span style="font-size: large;"><br /></span><span style="font-size: large;">And when your kid is sleeping 12 hours a night, and then <b><i>still </i></b>napping two hours a day, and then kind of "zombie like" when he is awake you long for the days when he's pulling paintings off the walls in a restaurant.</span><br /><span style="font-size: large;"><br />
</span> <span style="font-size: large;">And so towards the middle of that vacation we made an executive decision to pull the plug on the medical marijuana. (Holy crap we still haven't told his doctor about that yet!)</span><br /><span style="font-size: large;"><br />
</span> <span style="font-size: large;">And slowly but surely throughout that week he got some of his energy level back and we got some of that fesisty kid came back and some of his bad behaviors back too. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Yay for bad behaviors!</span><br /><span style="font-size: large;"><br />
</span> <span style="font-size: large;">And by the end of the week he was back to trying to pull paintings off of the walls!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Yay!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">That's about all I've got for this one. This is just a short blog post that's been rolling around in my head since wifey made that comment about 3 weeks back!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I've written a little about this before, about the weird trade offs you have to make in your mind as a special needs parent.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And how you sometimes long for the crazy days, especially if the crazy days was typical behavior for your kid and showed more of your kid's personality, or if during those crazy days your kid was healthier.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Anyway, that's all I've got right now. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And since school started we've got an even better balance going right now. He's awake a lot more, he's got good energy levels, and he's very happy, and he's only having a seizure every 7-8 days. Yay, progress!</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">So right now we're not wishing for a return of the feisty kid with bad behaviors... but knowing the king's ups & downs, when he has another down turn in a few months I'm sure we will be.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I'm sure in a few months we will be saying...</span><br />
<span style="font-size: large;"><i>"Pull those paintings off the wall in the restaurant you crazy nut, be feisty... you've got autism, that's what you're supposed to do!"</i></span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">THE END</span><br />
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</span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com1tag:blogger.com,1999:blog-5445812383851572581.post-49220459842826597112016-09-13T09:41:00.001-04:002016-09-13T09:41:47.726-04:00Wifey's Letter to the King's New Teacher on 1st Day of School<script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script> <script>
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<span style="-webkit-padding-start: 0px;">Wifey always writes a great letter/email to the teacher on the first day of school introducing her to the king. I thought I would post this year's letter because it's almost a little time capsule of where he was at when he started his 2016-2017 school year. I guess it's the equivalent of 8th grade for him, but he goes to an all special needs school and is in an all autism classroom with an 8:1:2 ratio (plus several additional 1:1 aides)</span></div>
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<span style="-webkit-padding-start: 0px;">Ok, so without further ado, here's this years letter which she sent in his backpack on the first day of school last Tuesday, September 6th.</span></div>
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<span style="-webkit-padding-start: 0px;">As always, the names have been changed to protect the innocent. :-)</span></div>
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<span style="-webkit-padding-start: 0px;">Enjoy!</span></div>
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<span style="-webkit-padding-start: 0px;">-------------------------------------------------------</span></div>
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<span id="yui_3_16_0_ym19_1_1473773145652_2982" style="-webkit-padding-start: 0px;">Dear E,</span><br />
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<span id="yui_3_16_0_ym19_1_1473773145652_2967" style="-webkit-padding-start: 0px;">Hello & Happy 1st day of school!!! We are AD & Wifey, K's parents. I wanted to introduce you to K... </span></div>
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<span id="yui_3_16_0_ym19_1_1473773145652_3001" style="-webkit-padding-start: 0px;">K is generally a very happy guy. He is very affectionate and loving. He loves greeting people, being around activity (not necessarily participating in it) swimming, swinging, snacking, books, music videos & his iPad. K understands everything although he may not present as such. He appreciates being spoken to respectfully and age appropriately and he will show the people that respect him his love in the form of hugs and kisses. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Communication:</span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span id="yui_3_16_0_ym19_1_1473773145652_3005" style="-webkit-padding-start: 0px;">Although he is non-verbal you will soon see that he will get his point across. He will take your hand & lead you to what he wants, he will take your hand and fling it towards an item, he can sign "more", he'll touch what ever food he wants, he waves hello & goodbye, fist bumps & high fives when prompted. </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">Toileting:</span></span></div>
<div id="yui_3_16_0_ym19_1_1473773145652_3010" style="-webkit-padding-start: 0px;">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span id="yui_3_16_0_ym19_1_1473773145652_3009" style="-webkit-padding-start: 0px;">Sadly, K has regressed over the past 3 months with his toileting skills. (He urinates in his pants & also needs to "point it down" when sitting on the toilet or else there is a mess). We need to create a behavior plan for his toileting ASAP please. This has to include peeing standing up, since he tends to want to sit. His time sitting on the toilet needs to be watched or he will take too much time. I have tried training at home the same way I taught him in the past but it's not working. We all need to be consistent. So for now, he needs to be taken to the bathroom every 15 minutes. I can send in pull-ups but I really hate to do that. (I'll have him wear one for the first couple of days of school until things get started). Also, if you put the toilet paper in his had and tell him to wipe, he will wipe. He probably won't get himself clean but it's a start. </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">Sleep / seizures:</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span id="yui_3_16_0_ym19_1_1473773145652_3013" style="-webkit-padding-start: 0px;">K sleeps a great deal. We are not sure why. He may sleep because of puberty, boredom, medications, seizures or a combination of them all. K often naps at school. We don't like it but we don't know if it can be stopped. Naps should not be encouraged. When K sleeps he needs to be watched very closely because that's when he has his seizures. K's seizures are generally petite - grand mal, the violent part lasting about 30 seconds the "aftermath" where he is less rigid, has unusual breathing, is slightly responsive & slowly coming out of the seizure can last another 30-45 seconds. (The school nurse is very familiar).</span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">VNS device:</span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><a href="http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns" id="yui_3_16_0_ym19_1_1473773145652_3018" rel="nofollow" style="-webkit-padding-start: 0px; background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank"><span id="yui_3_16_0_ym19_1_1473773145652_3017" style="-webkit-padding-start: 0px; color: #454545;">http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns</span></a></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">K has a VNS device (like a "pacemaker for the brain") on the left side of his chest, under the muscle, near his arm pit. When he has a seizure the divice will hopefully make the seizure less intense or prevent it all together. Furthermore, we have specific magnets that can be waved over the device for 5 seconds while the seizure is in progress to hopefully stop it in its tracks. It doesn't always work, but it's worth a shot. K's 1:1 aide needs to be shown how this is done. Actually, every adult in the classroom should know how to wave the magnet over the device. It's very simple & cannot hurt him. The school nurse knows all about this. I will send a magnet in a ziplock for the 1:1 to have on him at all times. </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">Sensory:</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">Often bouncing on a yoga ball, swinging and chewy tubes help K regulate. His OT from last year, knows him well. </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">Behaviors:</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">Behaviors come & go. He has been pretty easy going with me this summer. At times he hits - often out of excitement & impulse. It's always with a smile on his face & usually with someone he likes a great deal. K's hitting is never malicious. </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">Little things:</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">K only drinks water out of a water bottle or fountain. He can eat with a fork but that's not my priority. K presents as "lazy" and needs to be pushed to be independent. Even little things like opening a door, opening a ziplock bag, a container and of course we have been working on dressing and bathroom routine for years. </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">If you have any questions or concerns please do not hesitate to call me or K's Dad. We are always available. Our contact info is below</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span id="yui_3_16_0_ym19_1_1473773145652_3021" style="-webkit-padding-start: 0px;">I have also included a communication notebook in K's backpack as well as snacks for school. </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">Also included in K's backpack is an iPad (blue/black case that is used only for communication). </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">In addition to K's backpack he has a "bus bag" where his personal Ipad needs to go back and forth with him on the bus. He needs his iPad for the hour long ride. (K travels an hour on the bus from home). If possible, unless totally necessary, I prefer that he spends his downtime at school without his home iPad. (Since he is on it so much at home). </span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">I think that pretty much covers it, for the first day anyway ;-)</span></span></div>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="-webkit-padding-start: 0px;">Thank you very much for your kind attention to this note. I hope it helps!</span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;">2 days ago I <u><a href="http://www.theautismdaddy.com/2016/08/life-w-non-verbal-kid-w-autism-can-be.html" target="_blank">wrote a post </a></u>about how my wife went away for the weekend. And the point of the post was after 4 days of being alone with my non verbal son I realized what my wife goes thru as a stay at home mom (SAHM) with a non verbal kid.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">How quiet it can be and how long she can go without having an actual back and forth conversation with another human being.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">I ended that post by saying</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">Now I know what some of you were thinking, "why doesn't she get a job?"</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">Well that's what this post is about.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">Why doesn't my wife get a job while my 13 year old autistic & epileptic son is in school.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">It's a valid question I guess.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white;"><span style="color: #222222;">I'll admit that there's been points over the past year that I've wondered that as well and even suggested it to the wife.</span></span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">Prior to this year wifey would drive my son to and from school each day so her school day was a lot shorter.</span></span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">In an old <u><a href="http://www.theautismdaddy.com/2011/05/all-about-autism-daddys-wife-autism.html" target="_blank">blog post from back in 2011</a></u> I explained why she drove him...</span><br />
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<span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; line-height: 22.3999996185303px;">She is a stay at home mom because she's accepted the fact that my son's crazy schedule could never be handled PROPERLY if she were to work. </span></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br style="background-color: white; line-height: 22.3999996185303px;" /></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; line-height: 22.3999996185303px;">Because of this, unfortunately she lives & breathes autism 24/ 7 (where I get a 40 hour break each week at a glorious place called work). </span></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br style="background-color: white; line-height: 22.3999996185303px;" /></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; line-height: 22.3999996185303px;">She drives Kyle to and from school everyday. We could get busing but this is our (her) decision and the thinking is that we can't put a non-verbal kid on the bus. You hear too many stories about non-verbal kids accidentally being left on the bus all day or worse...</span><span style="background-color: white; line-height: 22.3999996185303px;"> </span></span></span></blockquote>
<span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And in another old <u><a href="http://www.theautismdaddy.com/2011/11/i-need-thicker-skin-all-about-money.html" target="_blank">blog post from 2011</a></u> I wrote this about why my wife is a SAHM</span><br />
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<span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; line-height: 25.2000007629395px;">When it comes to my wife getting a job... I honestly don't see what job that she could get for the 5 hours a day that Kyle is in school that would bring in enough money after taxes to make it worth her while...and what kind of job that she could get that would be so flexible with the weekly drama that is life with Kyle....not a week goes by where she isn't called about something... picking him up early because of an illness... going in early for a meeting.... dropping him off late after an early morning doctor appointment... It never ends...</span></span></blockquote>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">However, in September 2015 he switched to a new school... that we LOVE. A new school, that is 30+ miles away. A new school that you have to take a bridge and pay two tolls to get to.</span></span><br />
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</span></span> <span style="background-color: white; color: #222222;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So, since September we had to bite the bullet and put him on the school bus.</span></span><br />
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</span></span> <span style="background-color: white; color: #222222;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And it's quite a long bus ride. So he's out of the house from about 8am - 4pm.</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">So, yes on paper, she seemingly could get a job.</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And every once in a while when the king is going thru a good stretch behaviorally I think <i>"he's gone for 8 hours a day... So she could find a 6 hour a day job and still be home in time to put him on / take him off the bus"</i><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">But this week was a perfect example of why that's not always as simple as it appears to be.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">He had two seizures while in school on Monday while wifey was still away with her friends so I received two calls from the school nurse. </span></span><br />
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</span></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;">All those posts I wrote back in 2011 of why she's a SAHM? Those were before he started having seizures. Those started in 2012 at the age of 9. Epilepsy is our bigger worry these days.</span></span><br />
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</span></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;">So I fielded those two calls from the school nurse and had to make that decision as to whether or not it warranted picking him up early or letting him stay for the rest of the day.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">I made the executive decision (without checking with the wife) to let him finish out the school day.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">However, I'm sure if it was on her watch, she would've called me at work (probably her first conversation of the day) :) and we would've debated whether or not she should go pick him up.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">And wifey probably would have. And maybe I should have.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">He's been going through a good stretch with the seizures lately but they always seem to come back with a vengeance. And when they happen during school hours these calls and these types of decisions can happen on a weekly basis.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">So because of the Monday seizures she needs to pull him out of school early on Thursday this week to check in with the neurologist and find out why he's having more seizures. And I won't be able to take off work for that appointment so she'll be bringing him solo. So if she had a job, she would need to take off on Thursday afternoon...</span><br style="background-color: white; color: #222222;" /><br />
And then Monday night the king came downstairs and we realized the ring finger on his right hand was crazy swollen. We have no idea how he did it. But he likes to stick his finger in weird places and get it stuck, and he probably did that and yanked it out. His two knuckles looked bruised.</span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">We iced it and sent him to school on Tuesday, and both the school nurse and his nurse on the bus suggested that we get it x-rayed to make sure it wasn't broken.</span><br />
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</span></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;">On a side note...</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;">God knows what they think of us at the school, not picking up our kid after two seizures and sending him to school with a possible broken finger. But our thinking is, unless it warrants a trip to the hospital all he's going to do if he's home is sit on the couch and watch tv or nap, so he might as well be in school with more eyes watching him and a nurse right near by.</span></span><br />
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</span></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;">Anyway, so for a big part of the school day on Tuesday wifey was calling doctors, and getting a scrip for the xray faxed to the radiology department, etc. and we all went for the xray together when I got home from work (because getting xrays is a 2 parent job)</span></span><br />
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</span></span> <span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white;">xray results, it's not broken</span></span><br />
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</span></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;">All this to say that her getting a job that meets our autism and epilepsy lifestyle isn't easy.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">Could we use the money from a second income? Sure.</span></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;"><br />
</span></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="background-color: white; color: #222222;">Do these emergencies happen all the time? No, he can go months lately with no issues, no early school pickups, etc. However, when they do happen it seems like they come in bunches. And when he gets the common cold, he's usually out of school for a week. That's just the way he is. So she'd be taking off lots of time from work for all this stuff</span></span><br />
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</span></span> <span style="background-color: white; color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Is there a job that wifey could find that could fit this crazy schedule? Maybe, but it's not going to be easy.</span><br />
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<span style="background-color: white; color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And if she did get a job, she readily admits that it's got to be a job that takes her mind off of autism and epilepsy. She's not one of those moms that wants to do more autism stuff or special needs stuff as a career. Nothing against the moms who can do that. They are superhuman in our eyes, but she wants no part of that.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I wrote this in a previous <u><a href="http://www.theautismdaddy.com/2013/11/2-reasons-why-my-wife-is-coolest-autism.html" target="_blank">blog post from 2013</a></u> and I think it sorta fits in here as to why wifey doesn't have a job and definitely doesn't want a job in the special needs field...</span><br />
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">A couple of weeks back we had to bring Kyle for some medical tests in the early afternoon so I took the day off from work.</span></span> </span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The plan was to drop the king off to school in the morning and pick him up around 11:30am for his appointments.</span></span> </span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So I tagged along with the wife for her normal Friday morning routine. </span></span> </span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And she was full of energy. We dropped him off at school.</span></span> </span></blockquote>
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<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Then we went for a quick food shopping trip. She was literally racing around the store. And I'm struggling to keep up. </span></span> </span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Me: "Why are you running?"</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Her: "Cuz since he's only got a half day I got to fit it all in..."</span></span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Her agenda...</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Food shopping, a quick breakfast, then the gym, a quick trip to costco then we pick up the kid. </span></span> </span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And she was on speed, full of energy...</span></span> </span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">ME: "Are you like this every school day? How do you keep up this pace? I'm getting exhausted..."</span></span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">HER: "Yeah. I have a lot of energy in the morning. I gotta keep my mind busy. But late in the day I crash. Unfortunately I usually crash right before you get home from work..."</span></span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">ME: "Why don't you crash during the day and save some of that energy for me, for when I get home?"</span></span> </span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">HER: "Cuz I gotta keep myself, gotta keep my mind busy during the day. Otherwise I'd stay home and cry all day..."</span></span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">She just said it completely matter of factly...</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And I just nodded, smiled, and that part of the conversation ended and we went on with our day. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But it stuck with me. </span></span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Survival...</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">For wifey it's about survival. She tries to find joy in the little things, in the frivolous things and she keeps her mind busy...busy with autism things, of course, but also equally busy with non-autism things. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Anyway wifey is much better about keeping her mind busy and off of obsessing about autism and epilepsy and worry.</span> </span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And maybe if she didn't she'd do that she'd "cry all day" or more likely she'd go a little crazy or fall into a funk or a depression...which is what happens to me sometimes. </span> </span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">She's always the one of her autism mom friends trying to make plans and get out into the non-autism world as much as possible. </span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Movies, lunches, dinners, bars to see bands, etc.</span> </span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And it helps her a lot. </span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Others might think she's being selfish. And sometimes my brain thinks that too. </span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But it's about survival. And in the grand scheme of things it makes her a much better, more patient, happier mommy and wifey. </span></span></blockquote>
<span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So I'll end it there. That's why wifey's not working. Now if there was some high paying job that fell in her lap I'm sure we'd have a discussion and she'd go for it. </span><br />
<span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But to try to find the perfect job to fit her schedule to bring home a few extra bucks each month just isn't worth it right now.</span><br />
<span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Unless you've got the perfect job for her in a record store, or a radio station, or a music studio I'm sure she'd be all ears... :-)</span><br />
<span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">That's it... That's all I got. This is like one of my old school posts. It's literally all over the place! Hope it makes some sort of sense!</span><br />
<span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br />
</span> <span style="color: #222222; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">THE END</span><br />
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<br />
So wifey went away this weekend to the NJ shore with a couple of girlfriends. So I've kinda been like a single autism parent from Friday afternoon until Monday afternoon.<br />
<br />
And my 13-year-old son with autism and epilepsy was pretty darn great this weekend. He was mellow. And went with the flow. I have absolutely nothing to complain about and wifey truly deserved this weekend away.<br />
<br />
This post is just about something I noticed while kinda being a single parent over this weekend. Basically, I leaned it's quiet when there's no other verbal person in the house for three days.<br />
<br />
Of course I talk to the king but it's a complete one-sided conversation.<br />
<br />
And if I'm being perfectly honest I probably don't talk to him as much as I should and definitely not as much as one would with a typical 13-year-old.<br />
<br />
I will ask him lots of questions throughout the day and generally explain what I am doing and give him a blow by blow of what our agenda for that day is.<br />
<br />
But I'll admit that quite a bit of the rest of the talking I do is just listing steps.<br />
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"Wash your hands, turn off the water, use the towel."<br />
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"Get your peanut butter out of the fridge, grab a spoon, sit down..."<br />
<br />
So when I saw my sister and her family on Saturday afternoon it dawned on me that I probably went close to 24 hours without having a conversation with another human being.<br />
<br />
And we were home alone for most of the day on Sunday.<br />
<br />
I took a vacation day today because wifey wasn't getting home until right before his school bus. So while the king was in school today I was puttering around the house, doing errands, etc. And at some point I realized that the first conversation I had with another human being in person in I don't know how many hours was with the waitress at the diner at 1pm this afternoon.<br />
<br />
Basically having this weekend without wifey made me better appreciate what she goes through each weekday when I'm at work even more. <br />
<br />
She's a stay at home mom (SAHM) and there are some days when I walk in the door from work at 6:45pm and she's immediately talking my ear off. Giving me a complete blow-by-blow of her day.<br />
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And I'm tired from work and probably not paying full attention to her and she gets annoyed.<br />
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Every once in a while she'll say something like, "you're the first person I've had a conversation with all day. And you're gonna come home in a bad mood? C'mon just fake it like you're interested for 10 minutes and let me talk. You've been at work in meetings having adult conversations all day"<br />
<br />
And up until today I didn't really appreciate what she was talking about or what she was going through. But after this weekend with so few conversations, I now totally get it and appreciate it. I actually couldn't wait for her to get home from her trip so I could have somebody to have a conversation with!<br />
<br />
And boy did she talk my ear off when she got home! :-)<br />
<br />
Now I know what some of you were thinking, "why doesn't she get a job?"<br />
<br />
I'll cover that in a blog post tomorrow, but for now this is what I wanted to cover. The fact that life with a non verbal kid with autism can sometimes be very quiet. And you can go for long long stretches without a conversation.<br />
<br />
Do other autism parents of non verbal kids feel this way? You feel what I'm talking about? Or is this something that only single parents deal with? Or I guess if you're a single autism parent, then you have to work so you have conversations while you're working?<br />
<br />
So maybe this is only a SAHM autism mom thing?<br />
<br />
I dunno. <br />
<br />
All I know is it was really quiet around here without wifey. And I will try to be better about listening to her when she talks my ear off when I first get home. :-)<br />
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THE END<br />
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<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">As some of you may know, we have an autism service dog for my son.</span><br />
<span style="font-size: large;"></span><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /><span style="font-size: large;"></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">My autistic son is 13 now but we got our precious dog "Paula" 6 years ago when he was 7 years old, and at his most difficult behaviorally. And Paula was a godsend and extremely helpful to us.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">We got Paula from an amazing organization called Heeling Autism. It was an offshoot of the long-standing not-for-profit Guiding Eyes for the Blind (GEB) </span><br />
<span style="font-size: large;"></span><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /><span style="font-size: large;"></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">GEB had a long and storied history of supplying guide dogs to the blind population for the past 60 years.</span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiewvMpzIMzmdIxdfkWYZ6XOLdutPfPXd3pgVQ5hh7pqopBEKCxmJlV4YcxIj3qEA8hVpoUA9p1FMkTNfW-C7hxBrltGmMjzTu1pBQ4o8GQI8VY1bKl8O7p9IsCBm0hkHC66BhE8R2N0i4/s1600/paula1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiewvMpzIMzmdIxdfkWYZ6XOLdutPfPXd3pgVQ5hh7pqopBEKCxmJlV4YcxIj3qEA8hVpoUA9p1FMkTNfW-C7hxBrltGmMjzTu1pBQ4o8GQI8VY1bKl8O7p9IsCBm0hkHC66BhE8R2N0i4/s320/paula1.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Paula's graduation picture</td></tr>
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<span style="font-size: large;"></span><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /><span style="font-size: large;"></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">And back in 2008 they launched a program that took guide dogs that weren't a right fit for working with the blind, and they retrained them to work with kids with autism and gave them to these families for <b><i><u>FREE</u></i></b>!</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="font-size: large;"><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif;">I wrote all about our experiences with Paula and the organization back in 2011 on my blog post, <u><a href="http://www.theautismdaddy.com/2011/09/story-of-our-autism-service-dog-paula.html" target="_blank">"The Story of Our Autism Service Dog Paula"</a></u> that you can read <u><a href="http://www.theautismdaddy.com/2011/09/story-of-our-autism-service-dog-paula.html" target="_blank">HERE</a></u>. </span><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif;">I encourage you to go over and read that for more of a blow-by-blow of how we got her and how she helps.</span></span><br />
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<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">In fact I really think you should read that one before continuing on with the rest of this post.</span><br />
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<span style="color: #222222; font-family: "arial" , sans-serif;"><span style="font-size: large;">Go read it. Now!! READ IT <u><a href="http://www.theautismdaddy.com/2011/09/story-of-our-autism-service-dog-paula.html" target="_blank">HERE</a></u>!</span></span><br />
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</span></span> <span style="color: #222222; font-family: "arial" , sans-serif;"><span style="font-size: large;">We will wait for you, and while we are waiting we'll look at some pics of some more cute Heeling Autism service dogs doing their jobs.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVdejMcymRR-SwkjjVJKciSZpnKPwoRetrCDzZjy8-1AMJqySX38xIMC6d7quzPvHjJ4rGewoL2DWb60_KV4LM-MVv2oK1AeWtat8VhasnHvIeoYy1NKCoVTBihXITwkubZET5Jv6uctc/s1600/13626988_10208311579138540_3905084718179772900_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVdejMcymRR-SwkjjVJKciSZpnKPwoRetrCDzZjy8-1AMJqySX38xIMC6d7quzPvHjJ4rGewoL2DWb60_KV4LM-MVv2oK1AeWtat8VhasnHvIeoYy1NKCoVTBihXITwkubZET5Jv6uctc/s320/13626988_10208311579138540_3905084718179772900_n.jpg" width="207" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwukWwDK6VIHMD9nsUPkF3D-i-K37B_JOkIIS5UrQcTKM8uY6I9XQUj4lfcReRuU9Eq7hMcdYOYunIQVIJxQXUaERgcay5f3PDwNqCsR8h3ZkV-RlTnSSWKt5DcJIy_CPvps0tS6lUIsw/s1600/13590469_10208311579458548_1725574783731688553_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwukWwDK6VIHMD9nsUPkF3D-i-K37B_JOkIIS5UrQcTKM8uY6I9XQUj4lfcReRuU9Eq7hMcdYOYunIQVIJxQXUaERgcay5f3PDwNqCsR8h3ZkV-RlTnSSWKt5DcJIy_CPvps0tS6lUIsw/s320/13590469_10208311579458548_1725574783731688553_n.jpg" width="240" /></a></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: large;">ok, are you back? Sounds like a pretty amazing program, right? Cute dogs, right!?</span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif;"><span style="font-size: large;"><br />
</span></span> <span style="color: #222222; font-family: "arial" , sans-serif;"><span style="font-size: large;">The one thing that always stuck with me over the years about the HA program was the amazing trainers. As I wrote in that post:</span></span><br />
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<blockquote class="tr_bq">
<span style="color: #222222; font-family: "arial" , sans-serif;"><span style="color: red; font-size: large;">the 3 trainers we worked with were AMAZING! They somehow knew more about autism and our daily struggles than many people / even experts in our autism world... And they’ve only been doing this for 4-5 years. Before that they were blind guide dog trainers. Anyway… AMAZING women.</span></span></blockquote>
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<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">Well the reason I'm writing today is that the Heeling Autism branch of GEB is being eliminated. That's right the amazing organization that you just read about is going, going, gone!</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">And this makes absolutely no sense to the 70+ families who have received the miracle of a service dog from this organization.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">The reasons that have been given by GEB of why the program is being eliminated are frankly ridiculous.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">What they are stating is that the program is too expensive and wasn't self sustainable in its current model.</span><br />
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<span style="color: #222222; font-family: "arial" , sans-serif;"><span style="color: red; font-size: large;">Yet, Heeling Autism costs less than 1.5% of the organization’s total annual expenses, including less than 50% of the postage/mailing services and less than 23% of the printing/publications expenses.</span></span></blockquote>
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</span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">And worse of all, GEB gave nobody any indication that the program was in trouble.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">The families who have received these dogs would gladly have fundraised like crazy if we knew there was a problem. But we were never given the chance.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="font-size: large;"><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif;">GEB is trying to appease the autism community with plans to instead offer therapy dogs to schools. </span></span></div>
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<span style="font-size: large;"><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif;"></span><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">Saying that clearly undervalues exactly how monumentally helpful and life-changing these "service dogs" have been to the 70+ families that have received one.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">Can you imagine saying you're not going to give a blind person his or her <i>own </i>guide dog but instead going to put one dog in a group setting for a bunch of blind people to benefit from?</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="font-size: large;"><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif;">In both the blind and autism community there is a huge difference between a <i>therapy </i>dog and a <i>service </i>dog trained to perform very specific safety oriented tasks. </span></span></div>
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<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">For many of us having a <i>service </i>dog saved our kids lives on countless occasions.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">For some of us the idea of going on a plane or going on vacation was impossible with their autistic kids until the service dog came into their lives.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">However, the board of directors at GEB makes this seem like a done deal.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">The Heeling Autism program as we knew it will be eliminated after they graduate dogs for the 10-15 families that are on their wait list.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">(Meanwhile, they shut down their wait list a few years back because it grew too long and they didn't want to dedicate more trainers and dogs to the Heeling Autism program)</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">After those wait list families get their dogs GEB says they are moving towards this therapy dog in the classroom model.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">And there's a bunch of us who are trying to reverse this and implore them to go back to the current model.</span><br />
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</span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">And this is where you come in.</span><br />
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</span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;"></span><br />
<blockquote class="tr_bq">
<span style="background-color: white; color: red; font-family: "arial" , sans-serif; font-size: large;">A petition was started by graduates (a part of a team with either a guide dog or autism service dog), staff, volunteers, donors and members of the community who believe strongly in the Guiding Eyes mission, and we’re concerned about the direction Guiding Eyes has taken under the current leadership. The abrupt elimination of the Heeling Autism program is just the tip of the iceberg.</span><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;"> </span></blockquote>
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<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">So we started a petition to Save Heeling Autism that you can find <u><a href="https://goo.gl/7G1N0Z" target="_blank">HERE </a></u>or by clicking below.<br />
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<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif;"><span style="font-size: large;">So I implore you all to please sign it, and share it (using #SaveHeelingAutism), and post a comment on it.</span></span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">One last thing to mention, we autism families never wanted to make this a competition between the blind and the autism communities.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">They both deserve service/guide dogs and GEB has plenty of dogs to go around.</span><br />
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<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">And while the CEO is using the need for GEB to operate as a financially responsible organization as a reason for Heeling Autism's elimination, they have recently launched (and seem to have enough dogs for) a new program called "Running Guides" which is dedicated to training guide dogs to help blind runners run long distance races.</span><br />
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<blockquote class="tr_bq">
<span style="background-color: white; color: red; font-family: "arial" , sans-serif; font-size: large;">Saving the lives of children on the autism spectrum by preventing them from running out into a busy street, or wandering away to be lost, drowned, or even killed, is arguably an equally worthy cause.</span></blockquote>
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<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">Also, as any service dog trainer will tell you training a dog to run those long distances will almost definitely shorten that dogs working, service dog life.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">So we implore the Board of Directors at GEB to reverse their decision and reinstate the Heeling Autism program to its current model. And if possible to put even more resources towards the autism service dog program.</span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span><span style="font-size: large;"><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif;">And when you sign, comment, and share the <a href="https://goo.gl/7G1N0Z" style="text-decoration: underline;" target="_blank">petition</a> you'll see a lot of the other comments. And you'll read a lot of negativity. Yes, things have gotten a bit nasty over at GEB. There has been a lot of staff turnover and turmoil.</span></span><br />
<span style="font-size: large;"><br style="background-color: white; color: #222222; font-family: arial, sans-serif;" /></span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">Just last week the long time head veterinarian was abruptly fired. He worked at GEB for 26 years and knew every dog, and every dog recipient and their family (both the dogs for the blind & the autism service dogs). </span><br />
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</span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">Many of us think that his firing is in retaliation </span><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">of this petition as his wife is the head trainer of the Heeling Autism dogs, one of those amazing trainers I wrote about above. </span><br />
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</span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">But we feel that it's not too late to turn this around! Please sign, comment, and share the petition like crazy.</span><br />
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</span> <span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: large;">Thanks! Now here's two more cute doggie pics for ya of the king and his princess "Paula"</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMagbVUmbj1GTeL0ItAcXOvBIRk07B1JE1bi5kab5IDzUDGsHgjZPeawaoDh2UnL56Lr2DZ6PdPkuslR6y8U4vKFVEvlssNHADDn9scKpZ8HMDsE_GERDE5_iZVXvJiRSqPT3L65NLcZY/s1600/paula3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMagbVUmbj1GTeL0ItAcXOvBIRk07B1JE1bi5kab5IDzUDGsHgjZPeawaoDh2UnL56Lr2DZ6PdPkuslR6y8U4vKFVEvlssNHADDn9scKpZ8HMDsE_GERDE5_iZVXvJiRSqPT3L65NLcZY/s320/paula3.jpg" width="199" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Summer 2010</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkeBL5Yo0sTjZ7l0wOhAQk_tTppVdapsi-pcH3R76umPSJWvK4GgbeZS19DRsEgi0Y_pKJ0HyBKGG_D-YyfKfiNE9QSQoqWa4m-8LPIaatfCxyagQ3GM5EUwkepzZAkKcj6hpZHM6_8gI/s1600/13606821_1358187754209021_4141077595640399346_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkeBL5Yo0sTjZ7l0wOhAQk_tTppVdapsi-pcH3R76umPSJWvK4GgbeZS19DRsEgi0Y_pKJ0HyBKGG_D-YyfKfiNE9QSQoqWa4m-8LPIaatfCxyagQ3GM5EUwkepzZAkKcj6hpZHM6_8gI/s320/13606821_1358187754209021_4141077595640399346_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Summer 2016</td></tr>
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</script></span></span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com4tag:blogger.com,1999:blog-5445812383851572581.post-39119765075577125322016-07-01T12:55:00.000-04:002016-07-01T13:30:05.878-04:007 Secrets to Going On Vacation w/ My Autistic Son<br />
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<span style="font-size: large;"><br />
</span> <span style="font-size: large;">People are always asking how we do so well on vacations with our severely autistic son. They see our pics from the NJ Shore overnight getaways and pics from our week long upstate NY Lake vacation and marvel at how we do it.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Well I'm here to tell you that it is not easy. It takes a lot of work and planning and mental strength and patience, but over the years we have gotten much better about it. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Here's a few of our secrets. Most of these secrets are more about the parenting aspect of things. How to survive. :-) And most of these secrets pertain to our longer getaways. The overnights we've gotten better about, but the week long getaways need a lot of...</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: x-large;"><b><i><u>1) Planning, Planning, Planning. </u></i></b></span><br />
<span style="font-size: large;">We take a lot of stuff with us, particularly when we go away for that whole week. For the weeks leading up to our trip our home office becomes wifey's staging area. Here's a pic. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxhtYps6gh5dZdyxkjALj7P5MtOFCVm16IPsXwy-BWOsHAR7Iz7yFgcbp067ZIkzB-w_7OpM90CkiFBXsHdRYe3YUt_pDDYNLwjNKvQS3zsX6ENZJ3NGhVjO_-hkS55RNDLxNJjVsRLAY/s1600/blogger-image--2136289692.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxhtYps6gh5dZdyxkjALj7P5MtOFCVm16IPsXwy-BWOsHAR7Iz7yFgcbp067ZIkzB-w_7OpM90CkiFBXsHdRYe3YUt_pDDYNLwjNKvQS3zsX6ENZJ3NGhVjO_-hkS55RNDLxNJjVsRLAY/s400/blogger-image--2136289692.jpg" width="400" /></a></div>
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<span style="font-size: large;">And the place we stay has a kitchen so we bring LOTS of the king's favorite foods. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6RbCXGPTU3xKSai7YuTXqSYAi5wiOVXQ1gQ5-5bKFfuClqFO6a3nL70JQeIggw1sPn4k3C14OOTxbDhYmlMHZCNGDTvSo2suyWL44ylQOzkATXzIu3bngH3ot9RqRCbtLVAr-a-KLlAo/s1600/blogger-image-1962627495.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6RbCXGPTU3xKSai7YuTXqSYAi5wiOVXQ1gQ5-5bKFfuClqFO6a3nL70JQeIggw1sPn4k3C14OOTxbDhYmlMHZCNGDTvSo2suyWL44ylQOzkATXzIu3bngH3ot9RqRCbtLVAr-a-KLlAo/s320/blogger-image-1962627495.jpg" width="320" /></a></div>
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</span> <span style="font-size: large;"><br />
</span> <span style="font-size: large;">Every year on Facebook I take a picture of our minivan trunk before we depart and it's quite hilarious how much stuff we bring for 2 adults, 1 kid, and 1 service dog. Here's a pic from last year. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqZG53mV_fxPH7op7CHhGdggAb3zui1Vm8gfliMs5UE2Hb0lp5lK5r7xs2w4BUX0MmqtBwyTvu37axL972tmuvrsFPI7Ttg7WETtBa9yJUgGa7hvwN9nJ_seAQf5YLSyZ8jlHqCA7Au50/s1600/blogger-image-433490920.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqZG53mV_fxPH7op7CHhGdggAb3zui1Vm8gfliMs5UE2Hb0lp5lK5r7xs2w4BUX0MmqtBwyTvu37axL972tmuvrsFPI7Ttg7WETtBa9yJUgGa7hvwN9nJ_seAQf5YLSyZ8jlHqCA7Au50/s400/blogger-image-433490920.jpg" width="400" /></a></div>
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<span style="font-size: large;">If you look closely you'll see a toaster oven? Yeah, we even bring our own toaster oven. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Yes, we have a full kitchen in our hotel, but it lacks a toaster oven, and boy a lot of the king's meals are made in a toaster oven (hot dogs, chicken nuggets, waffles, etc). </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Lately we've been feeding him in the room before we head to a restaurant so that at the restaurant maybe he'll just watch a show on his ipad and let mom & dad scarf down a meal.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEesfEKCsvs8hVlgNbCc76TWdwQn6qv8U9uNGi9HiUMh4uNLIFcCU-Ihegtlb2ZraQXlUwM6vnL25qWS168iP296vmLm7MOBEVQe5ztFHmAT2Q97HfowpghlCT8isAsh7GMXrpcLB3NPw/s1600/blogger-image-900170819.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEesfEKCsvs8hVlgNbCc76TWdwQn6qv8U9uNGi9HiUMh4uNLIFcCU-Ihegtlb2ZraQXlUwM6vnL25qWS168iP296vmLm7MOBEVQe5ztFHmAT2Q97HfowpghlCT8isAsh7GMXrpcLB3NPw/s400/blogger-image-900170819.jpg" width="400" /></a></div>
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<span style="font-size: large;"><br />
</span> <span style="font-size: large;">You can also see his big green bouncy ball in that pic of our minivan. What you can't see is that the backseat is filled with the king's favorite books and toys. Whatever they are at that moment. And then when we get to the place wifey sets up his room with all the stuff to make it feel at home.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZLl-UCS-_mVHBkInzTeZdaCYRn0JeYBqiUUj9Wa5qApC8mh0M-xKHAziXZDD5-j0eDCOdcVXthqzOl7G9ytGrqsGbkDHOmfLZtSd36wd6wfDPD9_iBXkdDpeGjbiUfP9R08yq4igUeA4/s1600/229110_495352710492534_494806851_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZLl-UCS-_mVHBkInzTeZdaCYRn0JeYBqiUUj9Wa5qApC8mh0M-xKHAziXZDD5-j0eDCOdcVXthqzOl7G9ytGrqsGbkDHOmfLZtSd36wd6wfDPD9_iBXkdDpeGjbiUfP9R08yq4igUeA4/s400/229110_495352710492534_494806851_n.jpg" width="400" /></a></div>
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<span style="font-size: large;">We also bring our own sheets. One for familiarity, two because wifey gets skeeved out by hotel sheets sometimes, and three in case the king has any accidents. We also put a sheet on the couch in the living room in case </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbgcXhrrnPYSOZ9kBfggxZ7bPExPNXjIOk67fiZIRpQHtRU10mdmoCmAGzU3UGOS2WmMfEVTKoe7mYLk-hqLLOWyNbwx4peYhkWhZkZbWXc59LAmBzWui9t9NP8jDDclvq9WWcbJL-8vI/s1600/blogger-image--1686920815.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbgcXhrrnPYSOZ9kBfggxZ7bPExPNXjIOk67fiZIRpQHtRU10mdmoCmAGzU3UGOS2WmMfEVTKoe7mYLk-hqLLOWyNbwx4peYhkWhZkZbWXc59LAmBzWui9t9NP8jDDclvq9WWcbJL-8vI/s400/blogger-image--1686920815.jpg" width="400" /></a></div>
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<span style="font-size: large;">his majesty wants to lick the couch, he's licking our sheets, not their 20 year old couch.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Lots of planning goes into our week long getaways, and wifey does MOST of the work, but I do some which brings us to #2.</span><br />
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</span> <span style="font-size: large;"><br />
</span> <b><i><u><span style="font-size: x-large;">2) During the Planning Make Sure You Each Have Your Role.</span></u></i></b><br />
<span style="font-size: large;">Wifey does everything related to the packing and planning for our trips. I have five very important jobs. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">(1) I'm in charge of gathering and packing all the king's medicines and our medicines together </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizthooBsekdhBocREW3-hlI8Iqo_362o8Q1wG-BgdmNXYkDbfA2zoD9fIj3aTEmzcDcuLnvvoSgjAYe-goAJcuLg-jlpSm6MewA3dbpCnOZ7C2654FII6ukqyCnL1rTIKMbjidjgsE8ow/s1600/blogger-image-473925949.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizthooBsekdhBocREW3-hlI8Iqo_362o8Q1wG-BgdmNXYkDbfA2zoD9fIj3aTEmzcDcuLnvvoSgjAYe-goAJcuLg-jlpSm6MewA3dbpCnOZ7C2654FII6ukqyCnL1rTIKMbjidjgsE8ow/s400/blogger-image-473925949.jpg" width="400" /></a></div>
<span style="font-size: large;"><br />
</span> <br />
<span style="font-size: large;">(2) I'm in charge of gathering & packing all of the toiletries -- soap, shampoos, toothbrushes and toothpaste, condoms :-), hair brushes, hair dryer, etc. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">(3) I get all the electronics together (Ipads, laptops, phones, cameras, dvd's) and make sure we have enough chargers for all of them.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj81BEFWS6XoXbvrjC8gUvfH3WF_ZTGa10xSGPaWNr7MXKY-ns0TWaAu19eXh_j5Y0o-ce0L_ISka13FcDl96w04EWCYJHSn8wL9gsTPujO4z4005Q5G4DJSGrLgYVXSqJYxEXqD9q19Xk/s1600/blogger-image--676619205.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj81BEFWS6XoXbvrjC8gUvfH3WF_ZTGa10xSGPaWNr7MXKY-ns0TWaAu19eXh_j5Y0o-ce0L_ISka13FcDl96w04EWCYJHSn8wL9gsTPujO4z4005Q5G4DJSGrLgYVXSqJYxEXqD9q19Xk/s400/blogger-image--676619205.jpg" width="400" /></a></div>
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">(4) I pack the minivan with all of this crap. Let's see another pic of our packed minivan...</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcvvfGxffmauFaUJZ5jrGMLTdL_O8yOlurW9S2OMEf6bPacRcbKWlTDEKn2lvL_HZi3ooLYM5Vv8Pzwl_LvbBCRG62mqfO9_D7IHVH4IVmWSfeh03ifNv9w3Hzw4THEKXzViAX7l2gSGo/s1600/988272_682605485100588_1429098576_n+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcvvfGxffmauFaUJZ5jrGMLTdL_O8yOlurW9S2OMEf6bPacRcbKWlTDEKn2lvL_HZi3ooLYM5Vv8Pzwl_LvbBCRG62mqfO9_D7IHVH4IVmWSfeh03ifNv9w3Hzw4THEKXzViAX7l2gSGo/s400/988272_682605485100588_1429098576_n+%25281%2529.jpg" width="400" /></a></div>
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</span> <span style="font-size: large;"><br />
</span> <span style="font-size: large;">(5) I do all of the long distance driving. (wifey does most of the driving during our week away)</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Those are my 5 jobs. Wifey does everything else. And lately we've been much better about trusting the other person to do their jobs without asking questions or second guessing each other. Except that one year when I forgot the melatonin!!!! OMFG!! :-)</span><br />
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</span> <span style="font-size: x-large;"><b><i><u>3) Familiarity </u></i></b></span><br />
<span style="font-size: large;">Again, these are secrets that work for our kid. So your kid might be different, but we stay at the same place every year. It's not the fanciest place. It's pretty down & dirty (hence why wifey wants to bring her own sheets), but it's familiar to us. The king isn't one of those kids who freaks out when things aren't the same way every time, but over the years we've tried to stay in the same room every year. Room 131. It's a 2 bedroom efficiency and the king's bedroom is always the one on the right. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">It's nice to watch my son enter a place that he hasn't been in for a whole year and immediately know where everything is and know which room is his and what is expected of him.</span><br />
<span style="font-size: large;"><br />
</span> <b><i><u><span style="font-size: x-large;">4) Convenience</span></u></i></b><br />
<span style="font-size: large;">The other reason we stay there is that it's very, very convenient. Our room is just steps from the lake. I can be a bit of a cheapskate and years back I tried to save a few dollars by staying in a less expensive room that was farther from the lake. However, with an autistic & epileptic kid who can have a meltdown, potty accident, or seizure at any given moment, it's really nice to be steps from our room.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: x-large;"><b><i><u>5) Deal With The Kid That You Have That Year</u></i></b></span><br />
<span style="font-size: large;">My wife and I said to each other on one of our drives up to the lake, "it's like we show up to the lake with a different kid every summer" and it really is true.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And we try & structure our vacation activities around what kid we have that year.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">For example, in the real old days, in 2009BM (Before Melatonin), we had a kid that would get up at the crack of dawn and stay up really late and couldn't stand being in our room/cabin. So he would have us out all day long. We'd be at breakfast as the restaurant was opening up. We'd spend days at the amusement park because he wanted to be on the go all the time. And we'd have to drive around for an hour at night to get him to sleep in the car before carefully transporting him to the room.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And lately since my son has matured he is a lot more mellow. And is a lot cooler with just relaxing by the lake so that's what we mainly do.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And he probably sleeps too much while on vacation, partially due to being a teenager, and partially due to his seizures / anti seizure medication. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">So the past couple of years on vacation he's needed a late morning nap.</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">The first year that happened wifey & I got frustrated. "He's missing out on valuable sunshine and lake time!"</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">But last year we decided to respect his late morning nap and work it into our schedule. </span></span><br />
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<span style="font-size: large;"><span style="font-size: large;">We try to do some stuff together before the nap (lake time, breakfast out, etc) and then give him every opportunity to nap when we get back. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">And during his 60-90 minutes of slumber we use that time to our advantage. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I might go for a run while wifey watches him, or wifey might do yoga lakeside while I watch him</span></span><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif; font-size: large;">, or maybe we'll use that time to "made sandwiches" while he's napping (that's code for something :-)</span></div>
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</span><b><i><u><span style="font-size: x-large;">6) Don't Compare Yourselves to Typical Families You See Around You / Deal With The Hand You've Been Dealt.</span></u></i></b><span style="font-size: large;"> </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">The big village near where we vacation is a big throwback to an old days vacation spot. There's mini golf, arcades, ice cream parlors, etc. All things my son hates or is indifferent about. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Some years we travel up with other family members. </span><br />
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</span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">And after dinner the conversation always goes to "should we do GoKarts tonight or mini golf" </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Meanwhile my kid is yawning like crazy and annoyed that he's not in bed already. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">In the old days I would feel sad or jealous of all the stuff they were doing...all the stuff that my guy was missing out on...</span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">But I guess I've matured (or my antidepressants are REALLY working) cuz the past two years I am fine with the fact that by 9:00pm the king is asleep and wifey & I are in our room in our PJ's watching "Everybody Loves Raymond" repeats on TV Land while some family are in the village at the arcade. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">I think I realized that I was the one who felt sad. I was the one who was jealous. My guy </span></span></span><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif; font-size: large;">wouldn't like most of that stuff. So he really wasn't missing out on anything.</span></div>
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<span style="font-size: large;"><span style="font-size: large;"> <span style="font-size: large;"><br />
</span> <span style="font-size: large;">And the same goes for other families that we come across. </span></span></span></div>
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Am I jealous of the father that I see going out fishing with his son at 6am? Yes. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">Am I jealous of the families that I see that rent boats & go water skiing? Yes. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;">But that jealousy only lasts for a few minutes whereas years ago it would have lasted for a few hours</span><br />
<span style="font-size: large;"><br />
</span><span style="font-size: large;">I guess that's because over the past few years, I've come to the realization that fishing, water skiing, etc is not part of the hand we were dealt. We were dealt the autism & epilepsy hand. And I've come to accept that and try to have the best vacation we can have. And do mostly things according to my son's likes and needs while once in a while being selfish and pushing him out of his comfort zone to do something we like, like a dinner out at a restaurant or fireworks. </span><br />
<span style="font-size: large;"><br />
</span> <span style="font-size: large;"><br />
</span> <span style="font-size: x-large;"><b><i><u>7) Remember. You Are On Vacation Too!</u></i></b></span><br />
<span style="font-size: large;">You are on vacation too, damnit! Put your feet up when you can! </span></span></span><br />
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<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">Throw your diet out the window! Eat some bacon, barbecue some burgers, have some adult beverages! And "make some sandwiches" as often as you can! :-)</span></span></span><br />
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><br /></span></span></span>
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">That's all I got. That's 7 things that help us survive going on vacation with our 13 year old goof ball with autism & epilepsy. </span></span></span><br />
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;"><br /></span></span></span>
<span style="font-size: large;"><span style="font-size: large;"><span style="font-size: large;">We'll be going away to the lake again the last week of August. We shall see what this year brings and if I come home with any new secrets!</span></span></span><br />
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</span></span></span></span>Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com7tag:blogger.com,1999:blog-5445812383851572581.post-19416124403813644442016-06-30T13:58:00.000-04:002017-11-10T13:27:40.632-05:00Autism: Losing Hope Is Not a Bad Thing<script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script><br />
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<span style="font-size: x-large;"><i><b>(originally written & published on June 30, 2016) </b></i></span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">Earlier this week, I published the following picture on my Autism Daddy Facebook page...</span><br />
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</span> <span style="font-size: x-large;"><iframe allowtransparency="true" frameborder="0" height="505" scrolling="no" src="https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2FAutismDaddy%2Fposts%2F1353490028012127%3A0&width=500" style="border: none; overflow: hidden;" width="400"></iframe><br />
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<span style="font-size: x-large;">I only added that last line "boy I wish he could say that!) because I get new followers all the time who dont know the king so I wanted it to be clear that my son didn't say that and couldn't say that...</span></div>
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<span style="font-size: x-large;">But because I added that last line the photo went kinda viral and reached a lot of people. And I got a lot of comments.</span></div>
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<span style="font-size: x-large;">And quite a few of them were things saying "don't give up hope" "he might talk some day" "he might surprise you" "keep the faith", etc, etc.</span></div>
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<span style="font-size: x-large;">Well I'm here to say loud and clear that I <b>don't </b>have faith that he will talk one day. I <b>don't </b>expect him to surprise me.</span></div>
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<span style="font-size: x-large;">Basically, I <b>have </b>given up hope of my son ever speaking. </span></div>
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<span style="font-size: x-large;">And I think that's what keeps me sane.</span><br />
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</span> <span style="font-size: x-large;">When folks innocently ask me "Do you think your son will ever speak?" I just smile and say "Nope. I don't think he ever will."</span><br />
<span style="font-size: x-large;"><br />
</span> <span style="font-size: x-large;">They are usually taken back by the answer, but it's true.</span><br />
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<span style="font-size: x-large;">Now, I didn't say that I've given up hope that my son will ever communicate, just that he won't speak</span></div>
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<span style="font-size: x-large;">He's now 13 years old. And he's completely non-verbal with autism & epilepsy. And, yes, I have given up hope that I will ever hear words coming out of his mouth. </span></div>
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<span style="font-size: x-large;">I don't think that makes me a bad parent. I just think that makes me a realist.</span></div>
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<span style="font-size: x-large;">If I was still holding out hope that he would speak I think I would be losing my mind. </span></div>
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<span style="font-size: x-large;">Every once in a while someone on my page will say "my kid didn't start talking until he was 11" and I get hopeful and I want to immediately email them and find out what the magic bullet was for their kid that starting him talking at such a late age. And then I start going down that rabbit hole of having some hope, and it never ends well. It ends with me in a funk and depressed.</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">So, me not having hope keeps me sane.</span></span></div>
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<span style="font-size: medium;"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">I got a few other comments to the effect of, "God can do miracles" "Keep praying"</span></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">And I'm not a religious man, but if I was, the idea that I should keep "praying" for speech and "He might surprise me" would have sent me away from religion a long time ago. If God hasn't answered my prayers for the first 13 years, why should I keep praying?</span></div>
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<span style="font-size: x-large;"><span style="font-family: Arial, Helvetica, sans-serif;">Now all of this doesn't mean that we are still not working towards speech. We are not giving up on speech therapy at his school. But, maybe we are not fighting at his IEP meeting as hard as we would have years back to get 5 speech ses</span><span style="font-family: Arial, Helvetica, sans-serif;">sions a week at school instead of 4. And we are ok if they focus more on communicating with a device versus trying to get words to come out of his mouth.</span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">We just want him to be happy. And for the most part he is happy when left along and not bothered about trying to speak.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">And every once in a while a family member will say to him "C'mon say_____. I know you can say it!" and I get frustrated on behalf of the king. Can you image someone saying to you "C'mon speak Swahili. I know you can do it!" You'd want to punch them in the face.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">Anyway, that's all I've really got. And please don't take this blog post to mean that I'm upset at folks for writing those comments... or that we are going thru a particularly rough patch with the king.</span></div>
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<span style="font-size: x-large;"><span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">Also, don't take this blog post to mean that I think that having hope is a bad thing or believing in prayer is a bad thing. </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">I just felt the need to write this because I felt that it's really important to say that giving up hope is also not a bad thing...</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">I also don't think that me giving up hope is keeping him from speaking. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">And if my son does one day speak I will be thrilled and surprised, and I'll probably find some God to thank.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">But for now, I'm just living my life trying to keep him happy and myself sane.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">THE END</span></div>
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<br />Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com18tag:blogger.com,1999:blog-5445812383851572581.post-80257626935945576582016-05-06T14:40:00.000-04:002016-05-06T14:58:52.007-04:00Rage, Autism & Epilepsy: Why There's Not Much Progress Around Here<script async="" src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script> <script>
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</span> </span></span> <span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;">The king is going thru a mini "spring of rage" :-(</span></span><br />
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</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> Back in 2011 when I first started the blog I wrote often about his "summer of rage". Well, he's made a bit of a triumphant return to his raging days...and he's taking it out most on his teachers, therapists, and aides at his school...</span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> </span></span> <span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> I've written before that he normally has a rough last couple of months of each school year where his bad behaviors escalate... but this time it seems a little bit different, it seems like he can't control it...</span></span><br />
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</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> He'll be doing fine and then it's like somebody flips a switch and he just becomes a bit of a wacko... biting, kicking, spitting usually with a smile on his face and very often with a maniacal laugh which makes it all a bit more infuriating...</span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"><br />
</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: small;"><span style="line-height: 18px; white-space: pre-wrap;"><span style="font-size: medium;"> Sometimes it seems that his eyes become dilated before these rage episodes</span><b><span style="font-size: large;">**</span></b></span></span><br />
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</b></span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> Unfortunately, there's really not much we can do about all this. And this is a case where managing his epilepsy trumps managing his autism.</span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"><br />
</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> As I mentioned a week back or so, he's still having one BIG, SCARY seizure a week, so we have to focus most of our energies there. We had a neurologist appointment 2 weeks back and they increased one of his meds. And maybe that increase is causing the rages? </span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> </span></span> <span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> But not having seizures is more important that all of it. I wrote a post way back in 2012 called <u><a href="http://www.theautismdaddy.com/2012/12/ill-take-aggression-over-seizures-any.html" target="_blank">"I'll Take Aggression Over Seizures Any Day</a></u>" and I still feel that way. It sucks that we have to have one or the other... but sometimes it feels like that is the case...</span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> </span></span> <span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> Again, we have no f$$king clue what's causing the rages. Other times in the past, it was more obvious that he was hitting or biting to get out of doing something. However, as I hinted at earlier, with these ones recently it almost feels like he's having an out of body experience. He'll be cuddling with you one minute and then that switch will flip and he'll hit you.</span></span></div></div><b><span style="font-size: large;">---------------------------------------------------------------------------------</span></b><br />
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</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> I think we just have to ride it out and hope that it's just a phase and hope that his teachers, therapists, and aides remember the sweet boy they had for the first 7 months of the school year. Hopefully that buys him some good will. :-)</span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> </span></span> <span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> Seriously, I have no doubts his school staff can handle him and love him, but when he gets on one of his rages it can be tough so I'm worried for them a bit because he's gotten a lot bigger and stronger over the past few months (thanks to peanut butter!) :-)</span></span><br />
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</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> What really sucks about all this is that it prevents him from making any real progress at school (or at home)... and this has been the case for quite a few years now, but lately I'd say it's mostly because of the Epilepsy.</span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> </span></span> <span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> Over the past few years his time at school has been filled with lots of sleeping due to seizures or seizure meds making him sleepy.</span></span><br />
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</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> And now we are finally at a stretch where he is not napping as much at school, but instead he is raging.</span></span><br />
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</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> And both sleep and raging prevent any significant "school work" from happening...</span></span><br />
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</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> When he is sleeping he is obviously missing school work and the routine of the day... and when he is raging focus and attention to any tasks is difficult for him and they need 2 staff members on him for huge chunks of the day to protect the other kids.</span></span><br />
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</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> So when I see the IEP Goals each year, and then I see how he barely met any of them, I know what to blame... Sleep and rages... There's just not enough hours in the day sometimes when you've got sleep and/or rages to contend with...</span></span><br />
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</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> And again, these rage episodes seem to happen more at school, and when he is not raging or sleeping he is himself and is pretty happy go lucky... but he still sleeps too much. </span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> </span></span> <span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> Anyway, that's all I got. I just wanted to update you all on what is going on with his majesty because I've been re-posting a lot of old blog posts lately, but haven't given you any new updates on the king...</span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"><br />
</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"> That's it. THE END</span></span><br />
<span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; font-size: medium;"><span style="line-height: 18px; white-space: pre-wrap;"><br />
</span></span><span style="font-size: small;"><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif;"><span style="line-height: 18px; white-space: pre-wrap;"><b> ** </b><span style="font-size: medium;">= I hesitated to write that sentence about his pupils being dilated because I know I'm gonna get a ton of comments with explanations for what that means and I know some will scare the sh&t out of me. Just know that, of course, I've googled it and I know all of the things that it could mean. So please think before you comment about that and please don't scare the sh&t out of me! :-)</span></span></span><b style="font-size: x-large;"> </b></span></span><br />
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</script> Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com18tag:blogger.com,1999:blog-5445812383851572581.post-16542993511420023612016-04-14T16:25:00.001-04:002017-11-10T13:14:32.544-05:00I Don't Want To Cure My Son's Autism, But Everything Else That Comes With It<script async src="//pagead2.googlesyndication.com/pagead/js/adsbygoogle.js"></script><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicz6P-PGXN7ZQV3nNouubdm5fpwWuQgDa_ZDzTsk111bNtpIuTKUatf0IQSxkgi15CuoduPsIR8GbrXxejcuziTmQQPUYxaVQx43D7nQi7dcIWK3m6Fb18t4GTHiklze6hBi1vujP7jNc/s1600/177E4A2A-645D-48E3-87ED-4389467E4095.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="371" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicz6P-PGXN7ZQV3nNouubdm5fpwWuQgDa_ZDzTsk111bNtpIuTKUatf0IQSxkgi15CuoduPsIR8GbrXxejcuziTmQQPUYxaVQx43D7nQi7dcIWK3m6Fb18t4GTHiklze6hBi1vujP7jNc/s400/177E4A2A-645D-48E3-87ED-4389467E4095.jpg" width="400" /></a></div><div><br />
</div><div><br />
</div><i>(originally written & published on April 14, 2016)</i><br />
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Over four years back, when I was a young blogger I wrote a post called <i><u><a href="http://www.theautismdaddy.com/2012/01/to-parents-that-say-i-wouldnt-change-my.html" target="_blank">To The Autism Parents That Say "I Wouldn't Change My Kid For The World", I Say Bulls--t!!</a></u></i> where I comedically railed against parents that use that phrase. <script type="text/javascript">
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</div><div>In that post I wrote:</div><blockquote class="tr_bq"><span style="color: #990000;"><br />
"I wouldn't change him for the world."<br />
<br />
Come on, really?! Your kid sleeps less than 2 hours a night because of his autism. You wouldn't want to change that?! Your kid doesn't talk because of his autism. You wouldn't want to change that?! Your kid bangs his head against the window because of the big A. You wouldn't want to change that?! Your kid smears his feces against the walls. You wouldn't want to change that?! Your kid recites the same phrase from Dora The Explorer all day long. You wouldn't want to change that?!....</span></blockquote><div><blockquote class="tr_bq"><span style="color: #990000;">....Do parents of kids with cancer or diabetes say that? No, of course not those are life threatening diseases. Do parents of blind or deaf kids say that? I'd be curious. Do kids with down syndrome or cerebral palsy say that? I don't know, but I doubt it. </span> </blockquote><blockquote class="tr_bq"><span style="color: #990000;">So why are all the autism parents throwing that phrase around? Why do we feel like we have to be ok with it.... </span></blockquote><blockquote class="tr_bq"><span style="color: #990000;">....Then why did you try the GFCF diet? Why did you try neurofeedback or vitamin supplements? Why are you fighting for more ABA therapy?</span> </blockquote><blockquote class="tr_bq"><span style="color: #990000;">You know why? Because you want to change him. You want him to progress. You want him to be more typical....</span></blockquote></div><div><br />
</div><div>So I wrote that post in January of 2012, and for the next few years I would re-post it every 3-4 months or so because it is something that I felt strongly about...</div><div><br />
</div><div>And every time I would repost it, I would always take a lot of heat from the high functioning and Asperger's community. They would accuse me of being a horrible parent because they would say that I was trying to cure my son's autism. And they would accuse me of practicing albeism (definition: discrimination in favor of able-bodied people). </div><div>I have stopped re-posting as of late. Mainly because I've achieved a bit of a higher profile the past year or so, and I don't think it's necessary to fan the flames as much. I wrote that as a young, unknown blogger and as I read it now with the word bullsh-t in it, I can see how it's written in a reactionary, seat of your pants kinda way that some could take offense to.</div><div><br />
</div><div>So why am I bringing all this up again?</div><div><br />
</div><div>Well because one of the more rational arguments I get from people on this topic is basically the idea that <i>"you don't want to really cure the autism. It's the comorbid* conditions that really get in your sons way."</i></div><blockquote class="tr_bq"><span style="color: #cc0000;">*In medicine, comorbidity is the presence of one or more additional disorders (or diseases) co-occurring with a primary disease or disorder; or the effect of such additional disorders or diseases. </span></blockquote><div>And I kinda touched on my opinion of this way back in 2012 when I wrote a <u><a href="http://www.theautismdaddy.com/2012/01/followup-to-yesterdays-controversial.html" target="_blank">follow up post</a></u> to that original controversial post. In that post I wrote:</div><blockquote class="tr_bq"><span style="color: #cc0000;">Ok, so for those who've said getting rid of his autism is changing his personality and the way his brain works. To those folks I say, "I honestly don't know how his brain works. There are so many debilitating stims and habits that get in the way. So maybe you're right, maybe behind all the stims and add/ ADHD behaviors theres a beautiful unique autistic mind. So if you want to talk semantics maybe i don't want to get rid of / cure / change my sons autism, maybe I want to get rid of the tons of things that get in the way of him making any significant progress. But in my sons situation that's everything, the stims and behaviors and autism are all intertwined</span>.</blockquote><div>But this idea of autism being not that big a deal, and it's the comorbid conditions that get in my son's way keeps coming up in comments on my page & blog.<br />
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Most recently I wrote a post called <a href="http://www.theautismdaddy.com/2016/03/why-autism-supermoms-make-me-feel-bad.html" style="font-style: italic; text-decoration: underline;" target="_blank">Why Autism SuperMoms* Make Me Feel SuperBad </a> where I talked about my frustration when I hear stories about mom's who singlehandedly brought their asd kids from one functioning level to another. And the * in the title was explained later in the post where I said that these miracle stories like Carly Fleischman & Ido Kedar might need a warning on them saying "*results not typical" <br />
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</span><br />
<div><span style="background-color: rgba(255 , 255 , 255 , 0);">And in the comments of that post a woman named Stacey wrote:</span></div><blockquote class="tr_bq"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: #cc0000;">People need to realize you do not have an typical autistic child. I HAVE A TYPICAL AUTISTIC CHILD. He was moderately autistic and language delayed, and through early intervention, years and years of therapy, dietary intervention and an above average elementary school in our district, yes, I pulled him from special ed to mainstream, now almost un-detectable. Good for me. However, unlike The King, my child, Carly Fleishmann, Ido, your friend's sister's daughter, etc etc, do not have the additional burden of intellectual disability. Autism is Autism. intellectual disability is what it is. It is very likely and unfortunate that The King has both of these compounded by his epilepsy. Do NOT ever feel bad. You did everything you humanly could, just like I did, just like they did, however, as I said, our autistic children do NOT have a compromised intellect. They responded differently to the interventions we've all tried. </span></span></blockquote><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">So after reading Stacey's comment about her kid making lots of progress. And her notion that <i style="font-weight: bold;">he </i>is a typical autistic child and thinking about all the other comments over the years about how it's not the autism that's getting in my son's way, it's not the autism that's making my son do this, it's not the autism that's making him do that, it got me thinking...</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">Then what the heck is the autism exactly?</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">Now for the rest of this post, I'm gonna pull quotes from the wikipedia page for <a href="https://en.wikipedia.org/wiki/Conditions_comorbid_to_autism_spectrum_disorders" style="font-style: italic;" target="_blank">Conditions comorbid to autism spectrum </a> I know wiki's not always the best source, but I checked the sources that wiki is pulling from and they are all pretty stellar & reputable. Here's how autism is defined</span></div><blockquote class="tr_bq"><span style="background-color: rgba(255 , 255 , 255 , 0);"><span style="color: red;">Autism spectrum disorders (ASD), including Asperger syndrome, are developmental disorders that begin in early childhood, persist throughout adulthood, and affect three crucial areas of development: communication, social interaction and restricted patterns of behavior.</span></span></blockquote><span style="background-color: rgba(255 , 255 , 255 , 0);">Ok, so Stacey's comment above is that if my son <i><b>just </b></i>had autism, then with all the therapy he had over the years and all the hard work that he & we put in he should have come a long way by now since autism only affects communication, social interaction, and certain behaviors. Unfortunately he hasn't come a long way, and I guess that's because he's got several of the comorbid conditions that go along with autism.<br />
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Here's the list of the comorbid conditions that go along with autism from that wiki page. I'm going to highlight in blue and include some stats on the ones that we know that the king has on top of his good ol' run of the mill autism...<br />
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<span style="color: blue;"><b><u>1) Anxiety </u></b></span><br />
<span style="color: blue;">The prevalence of anxiety disorders in children with ASD has been reported to be anywhere between 11% and 84%</span><br />
<span style="color: blue;"><br />
</span><span style="color: blue;"><b><u>2) Attention-deficit hyperactivity disorder</u></b></span><br />
<span style="color: blue;"><br />
</span>3) Bipolar disorder<br />
4) Bowel disease<br />
5) Depression<br />
6) Developmental coordination disorder<br />
<br />
<span style="color: blue;"><u><b>7) Epilepsy </b></u></span><br />
<span style="color: blue;">One in four autistic children develops seizures, often starting either in early childhood or adolescence</span><br />
<span style="color: blue;"><br />
</span>8) Fragile X syndrome<br />
<br />
<span style="color: blue;"><b><u>9) Intellectual disability </u></b></span><br />
<span style="color: blue;">The fraction of autistic individuals who also meet criteria for intellectual disability has been reported as anywhere from 25% to 70%, a wide variation illustrating the difficulty of assessing autistic intelligence</span><br />
<span style="color: blue;"><br />
</span>10) Neuroinflammation and immune disorders<br />
11) Nonverbal learning disorder<br />
<br />
<span style="color: blue;"><b><u>12) Obsessive-compulsive disorder </u></b></span><br />
<span style="color: blue;">About 30% of individuals with autism spectrum disorders also have OCD</span><br />
<span style="color: blue;"><br />
</span>13) Tourette syndrome<br />
<span style="color: blue;"><br />
</span><span style="color: blue;"><b><u>14) Sensory problems </u></b></span><br />
<span style="color: blue;">Unusual responses to sensory stimuli are more common and prominent in individuals with autism, although there is no good evidence that sensory symptoms differentiate autism from other developmental disorders. Sensory processing disorder is comorbid with ASD, with comorbidity rates of 42–88%</span><br />
<span style="color: blue;"><br />
</span>15) Tuberous sclerosis<br />
<br />
<span style="color: blue;"><b><u>16) Sleep disorders </u></b></span><br />
<span style="color: blue;">Sleep disorders are commonly reported by parents of individuals with ASDs, including late sleep onset, early morning awakening, and poor sleep maintenance;sleep disturbances are present in 53–78% of individuals with ASD. Unlike general pediatric insomnia, which has its roots in behavior, sleep disorders in individuals with ASD are comorbid with other neurobiological, medical, and psychiatric issues. </span><span style="color: blue;">If not addressed, severe sleep disorders can exacerbate ASD behaviors such as self-injury</span><br />
<span style="color: blue;"><br />
</span><span style="color: blue;"><br />
</span>So after reading all that, then maybe autism isn't the bad guy. Maybe his autism isn't causing <i><b>any </b></i>of the king's major problems.<br />
<br />
</span><br />
<div><span style="background-color: rgba(255 , 255 , 255 , 0);">-- So maybe it's not the autism that's making him hold his breath so much, maybe it's his anxiety.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">-- So the autism isn't bringing on the seizures, that's his epilepsy of course.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">-- So the reason why he's still non-verbal and considered low functioning despite tons of the best therapies isn't because he's autistic. It's because he has an intellectual disability on top of his autism.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">-- So when he used to open & close the doors all the time that wasn't an autistic behavior, that was an OCD behavior.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">-- So the fact that he doesn't feel intense pain but brushing his teeth or getting his hair cut seems to be intensely painful to him isn't because he has autism, it's because he also has sensory problems.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">-- So the reason that he used to only need 3 hours of sleep a night (before we discovered the magic of melatonin :-) isn't because of his autism. It's because he also has a sleep disorder.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">Well then what the heck is autism again?</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">"Autism is a developmental disorder that affects three crucial areas of development: communication, social interaction and restricted patterns of behavior."</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">Ok, but then so how is my son affected by autism? I'm not exactly sure. It seems like the other stuff, the comorbid conditions seem to affect his life more than the autism</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">So maybe I'm not looking to cure his autism at all. Maybe I'm not a curist! Maybe I just want to cure all the other comorbid conditions that are on top of his autism. Maybe if we can cure all of those, we'd be left with a 12 year old genius who is thrilled and happy that he has an amazing, unique, autistic mind. </span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">And I don't think anybody would be upset with me and call me a horrible person if I said I wanted to cure my son's intellectual disability, or his epilepsy, or his anxiety, or his ADHD. It's only when you say you want to cure your son's autism that people get upset.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">So maybe I don't want to cure his autism anymore... but let's be honest, it does seem like the autism is the connecting factor between my son and all these other conditions. And those stats are rough. 25% of asd kids develop epilepsy. 30% of asd kids also have OCD. 50-75% of asd kids have sleep issues.</span><br />
<span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span> <span style="background-color: rgba(255 , 255 , 255 , 0);">So it really is hard to be thrilled that he's autistic.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">Because I think it's safe to say that odds are, if he didn't have autism, he wouldn't have epilepsy.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">Odds are, if he didn't have autism, he wouldn't have an intellectual disability.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">Or anxiety, or ADHD, or sleep problems...</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">So it's hard for me to not to want to cure the autism... if curing the autism made all those other conditions disappear.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">But I'll say it loud and clear. Maybe I don't want to cure my kid's autism!</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">I just wish he was like Stacey's kid... and just had easy, breezy run of the mill autism where, like her son, with hours and hours of intense therapy my son could make some significant gains.</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">I think I'll end it there. I'm not entirely sure why I wrote this post today. Stacey wrote her comment back on March 28th but I've been hearing her type of comment for a few years now. I think the combination of Stacey's comment on March 28th, combined with this being autism awareness month so I'm reading and hearing a lot more miracle stories, combined with me doing a lot of public speaking this month and talking about my son and his type of autism all brought this post to the forefront. </span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">And let me just say once again that I guess I've changed my stance from back in 2012, and now I don't want to cure my son's autism, but boy do I wish he didn't have the type of autism that also comes with epilepsy, OCD, ADHD, sensory issues, etc, you know?</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">Can anybody fault me or give me flack for saying that? I'm sure they can and they will, but that's my story and I'm sticking to it! :-)</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);"><br />
</span></div><div><span style="background-color: rgba(255 , 255 , 255 , 0);">THE END!</span></div><br />
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Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com29tag:blogger.com,1999:blog-5445812383851572581.post-20429202077089634672016-03-31T07:03:00.000-04:002016-05-05T22:26:08.329-04:00Sesame Street & Autism: 13 New Videos & an Emmy Nomination!!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbaq68_3UkHs0JS8zZvmeRqENL4FC7NvzAgAnbehL87p-YMfcUQ3HWObrticvvU_3ZWYSJK3Bfxkm6-QDHfHeVhyOxlaAPAt5TUr9IWlHMug52ueIoaLY4gsRIjhh5b00lYj2EFQFrHVo/s1600/Julia06.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbaq68_3UkHs0JS8zZvmeRqENL4FC7NvzAgAnbehL87p-YMfcUQ3HWObrticvvU_3ZWYSJK3Bfxkm6-QDHfHeVhyOxlaAPAt5TUr9IWlHMug52ueIoaLY4gsRIjhh5b00lYj2EFQFrHVo/s400/Julia06.png" width="400" /></a></div>
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">So as you all know by now, I work at Sesame Street. Last September I wrote a post called <a href="http://www.theautismdaddy.com/2015/09/my-name-is-frank-i-work-at-sesame.html" style="text-decoration: underline;" target="_blank">My Name is Frank. I Work at Sesame Street. I am "Autism Daddy"</a>. </span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">And in that post I explained that after 4 1/2 years of writing my Autism Daddy blog anonymously I was giving up my anonymity because I was working on Sesame's autism initiative and I was proud of that work and wanted you all to know. </span><br />
<div>
<span style="font-size: x-large;"><br /></span></div>
<div>
<span style="font-size: x-large;">And then on October 21, 2015, the day Sesame's autism initiative launched I wrote a post called <u><a href="http://www.theautismdaddy.com/2015/10/sesame-street-autism-my-2-worlds.html" target="_blank">Sesame Street & Autism -My 2 Worlds Collide in an "Amazing" Way</a></u> as a way to introduce you all to the resources that were part of the initiative.</span></div>
<div>
<span style="font-size: x-large;"><br /></span></div>
<div>
<span style="font-size: x-large;">And as you all know Sesame's autism initiative went crazy viral and dominated the autism social media world for a few weeks back in October. </span></div>
<div>
<span style="font-size: x-large;"><br /></span></div>
<div>
<span style="font-size: x-large;">Well now it's 5 months later, the original content has over 1 million views, and on the eve of Autism Awareness Month we are launching phase two of our #SeeAmazing autism initiative! </span></div>
<div>
<span style="font-size: x-large;"><br /></span></div>
<div>
<span style="font-size: x-large;">And I'm here today to walk you thru the 13 new video segments that you'll find on the site <u><a href="http://goo.gl/LGD0tx" target="_blank">www.sesamestreet.org/autism</a></u> </span><br />
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<span style="font-size: x-large;"><u><b><br /></b></u></span>
<span style="font-size: x-large;"><u><b>JULIA ANIMATION</b></u></span></div>
<div>
<span style="font-size: x-large;">Well first off is the video that I'm sure is going to get the most attention. Last October, Sesame introduced you to our autism muppet Julia in the autism storybook <u><a href="http://goo.gl/8twjz1" target="_blank">"We're Amazing 1,2,3"</a>.</u></span></div>
<div>
<u><span style="font-size: x-large;"><br /></span></u></div>
<div>
<span style="font-size: x-large;">Today we want to introduce you to our <u><a href="http://goo.gl/5SIgyU" target="_blank">new animation featuring Julia</a></u>!</span><br />
<span style="font-size: x-large;"><br /></span></div>
<span style="font-size: medium;"><br /></span>
<span style="font-size: medium;"><iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/fI-Sk7_ykzU" width="560"></iframe><br /></span>
<span style="font-size: medium;"><br /></span><span style="font-size: x-large;">And the best part about that animation is that the voice of Julia is a little girl with autism!</span><br />
<div>
<span style="font-size: x-large;"><br /></span></div>
<div>
<span style="font-size: x-large;"><br /></span></div>
<div>
<span style="font-size: x-large;">Now while that video is guaranteed to get a ton of attention over the past few weeks, as it should, there are a bunch of other videos that deserve some autism love too! :-)</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><u><b>BEHIND THE SCENES</b></u></span><br />
<span style="font-size: x-large;">Last October we introduced you to an animation called "<u><a href="http://goo.gl/1WTrsj" target="_blank">Benny's Story</a></u>" produced by the autistic students at the school <u><a href="http://goo.gl/KI1k3p" target="_blank">Exceptional Minds</a></u>.</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">Today I want to introduce you to a Behind The Scenes segment that shows the making of Benny's Story and all the young adults with autism who hand a hand in creating it.</span><br />
<span style="font-size: x-large;">
<span style="font-size: medium;"><br /></span></span><br />
<span style="font-size: medium;"><br /></span>
<span style="font-size: medium;"><iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/z_VIojymJGM" width="560"></iframe><br /></span>
<span style="font-size: medium;"><br /></span>
<span style="font-size: medium;"><br /></span>
<span style="font-size: x-large;">Next I want to re-introduce you to the kids with autism and their families that we featured in our films back in October.</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><span style="font-size: medium;"><br /></span></span>
<span style="font-size: x-large;"><u><b>NASAIAH</b></u></span><br />
<span style="font-size: x-large;">Last October, we introduced you to one <u><a href="http://goo.gl/cNVPl1" target="_blank">film featuring Nasaiah & Abby Cadabby</a></u> and one <u><a href="http://goo.gl/rShiyw" target="_blank">film featuring Nasaiah's mom</a></u>.</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">Today on the Sesame Street and Autism <u><a href="http://goo.gl/LGD0tx" target="_blank">website</a></u> you'll find 3 additional short films that show more from Nasaiah and muppet Abby's amazing playdate. Here's my favorite of the three, but I encourage you to check out all three.</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: medium;"><iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/vdBz3qtzr2c" width="560"></iframe>
</span>
<span style="font-size: medium;"><br /></span>
<span style="font-size: medium;"><br /><span style="font-size: x-large;"><br /></span></span><br />
<span style="font-size: x-large;"><u><b>YESENIA</b></u></span><br />
<span style="font-size: x-large;">Back in October we introduced you to a <u><a href="http://goo.gl/ExkLQi" target="_blank">film about Yesenia & her sisters</a></u>, as well as a <u><a href="http://goo.gl/BfP91Y" target="_blank">film featuring their dad Ricky</a></u>.</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">Today, we have two new videos with their amazing family! Here's one of the two!</span><br />
<span style="font-size: x-large;"><br /></span>
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/5NwG3Gw9Urs" width="560"></iframe><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><br /></span>
<u><span style="font-size: x-large;"><b>THOMAS</b></span></u><br />
<span style="font-size: x-large;">Last October we introduced you to a <u><a href="http://goo.gl/fLA6en" target="_blank">film about a boy named Thomas with autism</a>.</u></span><br />
<span style="font-size: x-large;"><u><br /></u>
Today we are launching two new videos featuring Thomas's family. Here's one featuring his mom Cindy.</span><br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/tv7dj-yd7ic" width="560"></iframe>
<br />
<span style="font-size: x-large;"><u><br /></u></span>
<span style="font-size: x-large;"><u><br /></u></span>
<span style="font-size: x-large;"><u><br /></u></span>
<span style="font-size: x-large;"><u><b>4 MONTAGES FEATURING 30+ ASD KIDS!</b></u></span><br />
<span style="font-size: x-large;">OK, so I've got 4 more videos that I want to quickly introduce you to, and these are the ones that I am most excited about!</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">The reason that I'm so excited about these videos is that while I'm happy to introduce to more films featuring our families from October I'm thrilled about these next four because they feature a bunch of new faces</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">A few months back we asked some parents of ASD kids to record their kids on their smartphones answering specific questions that we had. And then we asked them to send the videos to us.</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">And with those videos we were able to create 4 new segments / montages featuring over 30 kids from all over the spectrum.</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">"<u><a href="http://goo.gl/RZpSOK" target="_blank">What Makes You Amazing?</a></u>", "<u><a href="http://goo.gl/TakwFC" target="_blank">What's Your Favorite Food?</a></u>"</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">And the two below:</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">"What Do You Want Kids To Know About Autism?"</span><br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/uR0nuBr8xZg" width="560"></iframe>
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">"What Are Your Favorite Things?"</span>
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/QJoTT1qNYAU" width="560"></iframe><br />
<br />
<span style="font-size: x-large;">I'm really proud of these 4 montages, especially the fact that we were able to get such a wide range of ages, races, and functioning levels. And I'm thrilled that these videos show some of unique ways that our kids communicate!</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><u><b>SO THAT'S ALL 13, USE #SEEAMAZING</b></u></span><br />
<span style="font-size: x-large;">So that's it! Those are the 13 new autism videos that Sesame has to share with you and we encourage you to share them all like crazy throughout the month of April and use #seeamazing</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">Also please continue to share your own personal autism stories about your kids on social media and use #seeamazing</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">That's about all I've got to say... I think I'll end it there.</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">Oops I almost forgot! </span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><u><b>EMMY NOMINATION!</b></u></span><br />
<span style="font-size: x-large;">We also got the good news this week that </span><span style="font-size: x-large;">Sesame Street and Autism: See Amazing in All Children was nominated for a Daytime Emmy Award in the category of Outstanding Interactive Media, Original Daytime Program or Series!!</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">And a bunch of our producers and directors and filmmakers are on our list as those eligible for a trophy if we win...including me!</span><br />
<span style="font-size: x-large;"><br /></span>
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhguW2HG4d15rdSjMebMRBzR54EfeMwW0mWIozbfvxCeBkuPBI7hMqiRVo-c87bcJLnfY6xTZON3xM7Eub3nCpyStZ2ogdnB1nwKnt0aabaNgCU7kOTh5ZGZsUz2NkUsowq8xLMtPXgV38/s1600/Screen+Shot+2016-03-31+at+6.56.32+AM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhguW2HG4d15rdSjMebMRBzR54EfeMwW0mWIozbfvxCeBkuPBI7hMqiRVo-c87bcJLnfY6xTZON3xM7Eub3nCpyStZ2ogdnB1nwKnt0aabaNgCU7kOTh5ZGZsUz2NkUsowq8xLMtPXgV38/s1600/Screen+Shot+2016-03-31+at+6.56.32+AM.png" /></a></div>
<br />
<span style="font-size: x-large;">This is my first Emmy nomination during my time at Sesame Street!</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">Autism Daddy on the red carpet in Los Angeles?? Maybe! It's on April 29th. We shall see! Stay tuned! </span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;"><u><b>TIME TO END THIS POST</b></u></span><br />
<span style="font-size: x-large;">Ok, now I think I'll end this post. </span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">But just be forewarned that I'm extremely proud of all of these videos so I'll probably be posting <b><i><u>tons</u></i></b> of stuff about Sesame and our autism initiative over the next few days. </span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">Please forgive me.</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">I promise I'll be back to posting my usual rants and goofy pics of the king very soon!</span><br />
<span style="font-size: x-large;"><br /></span>
<span style="font-size: x-large;">THE END</span><br />
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Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.com3tag:blogger.com,1999:blog-5445812383851572581.post-81796243054221673822016-03-28T15:02:00.001-04:002017-11-09T13:19:46.316-05:00Why Autism SuperMoms* Make Me Feel SuperBad<div class="separator" style="clear: both; text-align: center;">
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</span><span style="background-color: white; color: #454545; font-family: "arial" , "helvetica" , sans-serif;"><i>(originally written & published on March 28, 2016) </i></span><br />
<span style="background-color: white; color: #454545; font-family: "arial" , "helvetica" , sans-serif;"><br />
</span> <span style="background-color: white; color: #454545; font-family: "arial" , "helvetica" , sans-serif;">I've been hearing about autism super moms lately. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Moms who single-handedly thru hard work and determination dragged their autistic kid from point A to point B</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Whether that be from nonverbal to verbal</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Or from low functioning to high functioning </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Or from a special class to a mainstream class. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Or from high functioning to declassified. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">These moms are out there. And they feel proud of their accomplishments, as they should be!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And some of them write books about their kids, as they should!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And go on the public speaking circuit, as they should!. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And they inspire many young autism parents, as they should! </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">However, for me, for a dad of a 12 year old still severe, still non verbal, still in the all autism classroom son, these super moms sometimes make me feel like crap. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">They make me feel like I didn't do enough, that I'm not doing enough. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And I know I'm not the only one that feels this way.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">He's a couple of examples from the recent past. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><u>Example #1</u></b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I went out to lunch with an old friend from HS who I don't get to see very often. He says that he says that he reads my blog often. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: rgba(255, 255, 255, 0);">And his sister has a daughter with autism named Beth and</span> he was saying things like <i>"My sister is amazing with her. She pushed her. When Beth was younger she couldn't talk and she would hit herself. But because of of my sister's hard work and working with her and advocating for her she's now 9 years old and talking and in a regular classroom."</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And I'm sitting there thinking <i>"why is he telling me this? Doesn't he know it's making me feel like crap?"</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Why does it make me feel like crap you ask?</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It's not because this kid progressed so much. I'm thrilled for his niece and their family!</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It makes me feel like crap because it makes it seem like without the hard work of this mom this kid would've ended up just like mine. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So maybe <i><b>we </b></i>didn't do enough. Maybe if we pushed our son harder when he was younger or advocated for him better to get that 5th speech session per week or that extra hour of ABA per week he'd be so much better off right now. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Now if my friend said, <i>"yeah she really responded well to ABA."</i> Or <i>"she went on the GFCF diet and it made a huge difference."</i> I would be fine with that. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Jealous maybe, because we tried ABA & the diet and they didn't work for my kid...but I'd be fine with it...I wouldn't feel like crap. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">But the way it's presented as this super mom single handedly thru determination and hard work dragging her kid from severe autism to a mainstream classroom that makes me feel like crap. </span></div>
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<b style="font-family: arial, helvetica, sans-serif;"><u>Example #2</u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I did a speaking engagement at an autism conference a couple weeks back and Temple Grandin was the main speaker. Temple Grandin is <b><i><u>amazing</u></i></b>. However a big part of her story is that her mom saved her. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And for the 1950s it is safe to say that her mom did save her. If it wasn't for her mom Temple would've been institutionalized. So you could say that Temple's mom was a true autism super mom who thru sheer determination brought out the best in her autistic kid. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And at that event I was speaking at with Temple, she was telling stories about her mom forcing her to do things she didn't want to do to strengthen her. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>"My mom told me I could spend a week at my aunts farm or the whole summer at my aunts farm. Not going was not an option. The idea of not going was never presented to me."</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And I'm sitting there blown away by her speech, while at the same time thinking <i>"I wish my kid had the reasoning skills and the perceptive language to understand a choice like that." </i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And then I got up and did my speech and started it with something to the effect of <i>"Temple Grandin is amazing. She is the shining example of what we aspire all of our autistic kids to grow up to be. Self sufficient autistic adults. However, the harsh reality is that no matter what we do all of our kids won't grow up to be Temple Grandin. I'm here today to talk about what life is like with a kid on the opposite end of the spectrum."</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And I had several moms come up to me afterward and say <i>"Temple speech was inspiring but it didn't apply to my kid. Your speech was just what I needed. In my autism world I'm not worried about the types of issues that Temple talked about. Like forcing my kid to play outside vs staying inside playing video games all day. That concept isn't even on my radar. I'm just trying to make it thru each day without my kid trying to injure himself or trying to potty train a 7 year old."</i></span></div>
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<b style="font-family: arial, helvetica, sans-serif;"><u>Example #3</u></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I will be speaking at an autism conference soon and there are two keynote speakers. The first is a high functioning autistic adult who I've l seen speak before and the second is a mom who wrote a book about the way she brought her asd kid from point a to point b. Her book is described as "the powerful story of one mother’s love and her stubborn refusal to give up on her child."</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And I don't want to mention their names because they're both great speakers and they both have amazing things to say so this post isn't about bashing them.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">However if I'm in the audience and I've got a kid older than, I don't know lets say 9 years old, and my kid is still nonverbal, still banging his head against the wall, still not potty trained and I've tried lots of stuff with him and didn't give up on him, will these speeches inspire me or make me feel like crap?</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'm not saying these people shouldn't be out there telling their stories. There stories are full of hope and possibility.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't know what I'm saying exactly. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">I just want it to be known that it is possible for a parent to be a super mom or a super dad and be everything and do everything for their autistic kid and yet the autistic kid doesn't make much progress and is still nonverbal. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">That's why I think my blog has been so successful and why I'm starting to book a lot of speaking engagements. I tell a story of parents who tried lots of stuff and it didn't make things much better. And I think there needs to be more me's out there. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">More people like me telling their stories of what life is like when you feel like you are an autism super mom or super dad, an autism warrior, and yet despite all your best efforts and your all your super heroic hard work, your kid is still severely autistic, non-verbal. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Despite all your tenaciousness and your "stubborn refusal" not to give up you're still not able to able to bring up your kid's functioning level from point A to point B.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Can we all admit that not every kid with autism has the potential to be Temple Grandin? Not every kid with autism has unlimited potential? That doesn't mean I've given up on him. That doesn't mean we are not trying new things all the time. We are trying a new teaching protocol right now. But m</span><span style="font-family: "arial" , "helvetica" , sans-serif;">aybe all my heroic super dad work got my kid as far as he can get.</span><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I say in my presentations that I think that the autism miracle stories (like Temple and the supermom author) are rare, but they don't seem rare because many times that's all we read/hear/see about autism. Why? Because that's how the Internet works. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #454545;">So, I guess maybe I'd be totally ok with all these autism super moms and all these autism miracle stories if they all came with a disclaimer. The same disclaimer they put in tiny print on late night infomercial diet and acne medicine commercials.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5FRWLqAHNaVvnkd0jpDQUvDiy0N7k3x2a3oPRarH5zKgu__bWPNucPqeorj2YEeM-fhgG2C_39GNX1Q5lr_17nCIp_chwwlEcuVotJk89ciKnHzt6KAKzNLroyfD0D_vGoFPzZWg4jHo/s1600/results-not-typical.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5FRWLqAHNaVvnkd0jpDQUvDiy0N7k3x2a3oPRarH5zKgu__bWPNucPqeorj2YEeM-fhgG2C_39GNX1Q5lr_17nCIp_chwwlEcuVotJk89ciKnHzt6KAKzNLroyfD0D_vGoFPzZWg4jHo/s1600/results-not-typical.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5FRWLqAHNaVvnkd0jpDQUvDiy0N7k3x2a3oPRarH5zKgu__bWPNucPqeorj2YEeM-fhgG2C_39GNX1Q5lr_17nCIp_chwwlEcuVotJk89ciKnHzt6KAKzNLroyfD0D_vGoFPzZWg4jHo/s320/results-not-typical.jpg" width="320" /></a></div>
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">*RESULTS NOT TYPICAL</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I think I'm going to end it there. And as I'm re-reading this post before I hit publish and i see all those question marks in it, I fear that this post is going to come off that I'm angry. And that is not the intent here at all. My intent here is to make all the parents of kids like mine feel ok... to make sure that they realize that if you are doing all you can for your kid and your kid is still on the lower end of the spectrum, that's not your fault. </span><br />
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</span> <span style="font-family: "arial" , "helvetica" , sans-serif;">Maybe the Temple Grandin's of the world and the Carly Fleischmann's of the world and the Ido Kedar's of the world are the exceptions to the rule... maybe their results are not typical and your kid's slow or no progress is typical..</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Maybe it just is what it is...</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">THE END</span></div>
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