tag:blogger.com,1999:blog-5445812383851572581.post5454072883900240088..comments2023-10-28T08:05:25.184-04:00Comments on AUTISM DADDY : "But He Was So Good When You Were Here Last Time..."Autism-Daddyhttp://www.blogger.com/profile/01849264034102026919noreply@blogger.comBlogger37125tag:blogger.com,1999:blog-5445812383851572581.post-39945421602311702862015-11-26T19:20:36.290-05:002015-11-26T19:20:36.290-05:00I read a lot of your articles and I don't real...I read a lot of your articles and I don't really know how to put this in words. My daughter-in-law and son were new to the world of autism, their son had yet to be diagnosed, and he was just an infant. They said he had special needs because he required more time, more patience, just more.They would panic when he babbled loudly at a restaurant, cringe when taking him in a store, just over-react to everything (so I thought). I started watching the reaction of others when we were out. No one even noticed when he was being his big beautiful self! LOL I loved his character and personality, but they were so overwhelmed by him and the energy that was drained by taking care of him that they thought it was bothering everyone like it bothered them. It didn't - seriously - it bothers the parent more because you are so drained and exhausted that you respond quicker. You know what is coming next. We don't. I see my beautiful grandson being perfect just as I see him every time I am with him. My grandson is 7. I yelled at him once last year - never before and definitely never since - he was destroyed by it. He wasn't listening to me about homework because he had a friend who was ringing the doorbell, pounding on the door, and looking through windows to get my grandson to come out to play. It didn't matter that I had told this kid that we had to do homework. I was made at this other kid - not my grandson - but yelled at my grandson instead and his little heart was broken. So yes, I do see he has different needs, but it doesn't bother me. He has tantrums and temper fits (esp with his dad) and I watch trying not to interfere, but I am always ready to jump in and do whatever his parents ask of me. Both my grandchildren are perfect - one just has autism. ♥<br />Did the best I couldhttps://www.blogger.com/profile/15777060621864389584noreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-44151342836642449542015-04-05T13:38:28.881-04:002015-04-05T13:38:28.881-04:00Yep, I get this post completely! Especially the ea...Yep, I get this post completely! Especially the eating in shifts part. Then we get the "well-meaning" comments of "Why do you take him out?" Oh yeah, you're right! We shouldve just kept him in the cage and ate our dinner! Cuz everyone knows you don't take non-typpies in public! (sarcasm for those who don't recognize it) We also try the "Come to our house" invites, but it falls on deaf ears. The don't realize one of us is positioned on each end of him, blocking the exits, tunnel visioned, and in squat pose like we are quarterbacks waiting for the punt. Yeah, we are having a fantastic time at Grandma's surprise luau party! Anyway, thanks for your posts cuz they really hit home and make us feel less alone. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-38480859069423780172014-10-05T19:37:47.648-04:002014-10-05T19:37:47.648-04:00Well what other think of as a fun time for people ...Well what other think of as a fun time for people like me an Kyle can be an event in hell I pick an choice now what I go to an my cousins an other family members understand me that I can stay for just so long then I'm done when litte if we went to someone home my parents would stay as long as they could but new from me when it was time to go or I could go chill in another room .what hard is everyone talking at once do it like your trying to adjust the radio station but you can't an you hear bunch at onetime mix that with everyone were perfumes an stuff mix with diff goods cooking most we proudly wount eat as we are supper picky an stuff .thought I do much better then when younger .it still hard an the next day I'm on megor sencorvey over load I will let my friends or family no when I need to leave . It tricky for us .an it not that we ding always want to be with u it just hard LYRIC NOTEShttps://www.blogger.com/profile/12561059214657500570noreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-31131316136168466472014-10-05T18:31:49.387-04:002014-10-05T18:31:49.387-04:00I work with kids with special needs and have been ...I work with kids with special needs and have been asked by parents of the parents of the child who i work with to persuade them to bring their child because "won't it be good for them" or he was good the last time they won t listen to us but they will listen to you . I politely decline, because 1) as the support worker not my place to persuade them to do this 2) I get it , they already have so much going to try and run interference with their child all night well you put enough explanation in your postNancyhttps://www.blogger.com/profile/16549215491463870250noreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-31490443540011853382014-04-22T11:08:47.310-04:002014-04-22T11:08:47.310-04:00This post is most of us with children on the spect...This post is most of us with children on the spectrum......I have six children and sometimes I have to just leave the youngest with someone else just so the other children will have fun time with me.. I do occasionally expose my youngest to new experiences but 50% of the time I'm too stressed to enjoy myself so I know she's not either..... life with a child with asd isn't a walk in the park and most people don't understand the difficulties we face daily and the anxiety when new places are introduced to our child......Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-77194812640435864422014-04-21T20:12:11.625-04:002014-04-21T20:12:11.625-04:00I am just working on a blog post about this kind o...I am just working on a blog post about this kind of thing now. My 22 year old son recently moved to a new group home, and my friends have all been asking how it is going -- and I want to tell them "It's great, perfect" after the long and difficult search to find this place. But I know if I tell them so, the next time they ask I may have a completely different answer, because life with our kids is always up and down. And I can't bear the disappointment and confusion on their faces when they ask "but I thought he was doing so well…?" It's simply a fact that others who are not living this life, even when they sincerely want to understand, simply can't. I appreciate the honesty I find in your blog, Autism Daddy. It does help to know we aren't alone.Kristenhttp://www.goodmarching.comnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-89693007223720338982014-04-21T15:02:31.680-04:002014-04-21T15:02:31.680-04:00I have a five year old that has never met her fath...I have a five year old that has never met her father. I do everything alone and never realized how many other parents know what i'm going through. I'm tired. My life is all about autism because anything else is too exhausting. Thank you for validating my guilty mindset. I stay a bit annoyed with family because everyone complains about one another and takes everyone for granted. Walk two steps in my shoes and then I will have no problem listening to you complain, It's called perspective. I know how terrible I sound but if you knew my family........ SMH!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-53014686722109710372014-04-21T12:57:53.676-04:002014-04-21T12:57:53.676-04:00We know just what you you mean. We went to a dinne...We know just what you you mean. We went to a dinner yesterday at my mothers and our son was really out of his element with all those other kids running to and fro having fun doing things he did not understand. And as far as getting him to eat he had only one thing on his mind and was get me out of here. when it came time to hunt eggs he went out and laid down on the ground and wined and cried because he was ready to leave and get out of there. we are learning to say no to a lot of invites because we know that our son is not going to enjoy himself. Anyone who thinks it is easy planning things for a child with severe Autism is easy has never tried it. You never know if they are going to like what you plan or how long they will tolerate it before having a complete melt down. Love your blogs so keep them coming.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-18906042125045526532014-04-21T12:51:01.966-04:002014-04-21T12:51:01.966-04:00We do the same thing, sometimes it's good and ...We do the same thing, sometimes it's good and other times it's a disaster... We always have an escape plan and sometimes we take 2 cars just in case one of us needs to leave...even when we have events at our house my daughter does not do well until everyone is there and she can relax, but when they arrive she has anxiety...so it takes her a while to get comfortable and enjoy the company...missyMissy schroedernoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-46720556019247477112014-04-21T12:50:56.527-04:002014-04-21T12:50:56.527-04:00Hit the nail right on the head. To boot, we altern...Hit the nail right on the head. To boot, we alternate staying up with him when he wakes up at 02:30, even with Melatonin and a 10:00pm bed-time. Sometimes yes, sometimes no but I tell ya, it REALLY makes those "sleep through the night" nights really special!Anonymoushttps://www.blogger.com/profile/11233421158375179137noreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-82780991927906482442014-04-21T10:51:27.934-04:002014-04-21T10:51:27.934-04:00You've described our life exactly, down to wh...You've described our life exactly, down to who has wrangling duty! We to have supportive families and friends, who still somehow, don't get it and can't budge in their plans. Anonymoushttps://www.blogger.com/profile/05436364665661293832noreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-16021800186293335192013-12-28T12:43:23.147-05:002013-12-28T12:43:23.147-05:00 We can relate to that a lot. Our little man is 2 ... We can relate to that a lot. Our little man is 2 and has higher functioning autism but it is so difficult to attempt eat at a restraunt full if distractions and overstimulus we tend to have to have one of us eat then the other like you and your wife. As for family get togethers he tends to play a little bit once comfortable with his surroundings but is so overstimmed that he does not eat or drink much of anything the whole time. Which for a child who is small for his age already is kinda dangerous. Jason Jacobsnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-77611846319951732882013-12-27T22:03:25.603-05:002013-12-27T22:03:25.603-05:00I SAY WE ALL MOVE TO THE SAME TOWN AND TAKE IT OVE...I SAY WE ALL MOVE TO THE SAME TOWN AND TAKE IT OVER! LOL!! JUST SAY WHERE AD?!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-50845164319053603022013-12-27T18:36:17.207-05:002013-12-27T18:36:17.207-05:00Everything that is being said in these posts is ve...Everything that is being said in these posts is very accurate.<br />I just want to say one thing though. I am a teacher of children with Autism. I have been for 17 years, since I was 21 years old. I know no different and I don't imagine myself ever doing anything else.<br />So I do understand the issues that everyone else is talking about. However, the common thread coming through this post is "Other people don't understand." Of course they don't. Because they do not live through your experiences. Everybody has their own issues in life, their own agenda and their own wants. You know, because you live it. But they do not see what you go through. And honestly, they don't want to. That is cruel but that is the way it is. Before your lives were touched by autism, did you actually care how it affected other peoples' families? Honestly, your answer would be no. So the people you are complaining about... you were once them!<br />For myself and professionals like me, it is a choice. We do not experience 24 hours and the ongoing draining issues, but we see a glimpse. Your role in life is not what you expected it to be. And unfortunately, other people with their own agendas and "needs" will not see everything that you have to do and the choices you have to make on a daily basis. Hard as it is, you may have to sometimes see from their perspective. All they want to do is have you around and include you. That is their agenda, it comes from a good place. They feel your inability to meet their needs as rejection of them. <br />But stop feeling the guilt for it. That is the main lesson.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-17253499170401831162013-12-27T11:00:31.432-05:002013-12-27T11:00:31.432-05:00Love the honesty of this blog and from a dad's...Love the honesty of this blog and from a dad's perspective! My husband is a staff pastor at a church of about 1200 people. We get invited to EVERYTHING and are constantly saying no. Our 33 year old son Jon, has Down syndrome and autism. doesn't like crowds and chaos (unless he's creating it) and really doesn't even want to go the places with us 99% of the time. People are always asking, "Why don't you just bring him?" I can't help but wonder if they realize there's a reason he's never even at church with us. Sometimes I'm tired of explaining it again. so I just smile and say. "I'll tell you about that sometime but thank you for the invite." My husband and I like to say that folks have to be Jon-a-tized to get it. I know you all understand what that means. I wrote about it here: http://aplacecalledspecial.com/2013/11/16/jon-a-tized/<br />Thanks for this awesome blog, Kyle's dad! :)Dianehttps://www.blogger.com/profile/03442578787664762869noreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-27269243201487741352013-12-27T10:39:56.534-05:002013-12-27T10:39:56.534-05:00Well said. My family is always saying "no Won...Well said. My family is always saying "no Wonder you are so skinny" but they just go right back to their visiting and my husband and I continue playing goalie and taking shifts trying to eat while the still has some warmth to it. It can be so exhausting. Luckily my parents completely understand and help out even have their house safe for my kids so we can actually sit and enjoy ourselves. Anonymoushttps://www.blogger.com/profile/08617783978838058713noreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-21661392357824421382013-11-08T11:30:52.213-05:002013-11-08T11:30:52.213-05:00We never declined events as long as one of my cous...We never declined events as long as one of my cousins didn't bring his dog to the house, but maybe that's how mild I amaspiegurlnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-50471140675654853912013-03-31T09:48:44.437-04:002013-03-31T09:48:44.437-04:00How true! We also decline because our son has food...How true! We also decline because our son has food allergies and is on GFCF diet as well! We can't even host a party as he is so..so.. fond of eating and wants to eat everything.....and other people, I'm sure, would never ever like a GFCF and allergy diet party!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-72530014578483619982013-03-31T08:42:29.345-04:002013-03-31T08:42:29.345-04:00I can SOOOOO relate. Thanks for saying it, I am g...I can SOOOOO relate. Thanks for saying it, I am going to share on FB . . .Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-46682802663193952742013-01-04T02:02:27.033-05:002013-01-04T02:02:27.033-05:00thank you... I get this all the time... I have 2 w...thank you... I get this all the time... I have 2 with autism... and because they are teenagers I also get..."if you don't make them go, they will never learn" or "if you don't invest in the family, then don't expect them to invest in your kids"... I use to get hurt or felt guilty, but now I just say... why should I force them, forcing them won't make them learn but it will make them have a meltdown, so no thanks... and as to no one will invest in me or my kids... all I say, is really, that's all it takes, well hell, i should have started this earlier... LOL... of course no one thinks it's funny, but since I have changed our idea of what we celebrate and who with, my kids have enjoyed events more often, and frankly... I am happier too...morentin1326https://www.blogger.com/profile/16814396170854225946noreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-28123444332393898902012-11-16T19:41:43.347-05:002012-11-16T19:41:43.347-05:00I love you. Our son is higher functioning than yo...I love you. Our son is higher functioning than yours but shit with family is my biggest beef. I also think the credit you give your wife is SEXXX-XXXAY!!! ;D RachelAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-29358667828425102302012-11-16T13:24:05.392-05:002012-11-16T13:24:05.392-05:00I have family members that understand and then tho...I have family members that understand and then those who don't. Either way I don't fall into the guilt trips. I have an uncle who flew up from California (to Oregon) who I haven't seen in 13 years. He was completely butt hurt the whole visit because my mom and grandma asked him to drive them to see me which is an hour and a half away. I understand, he came to Oregon and normally it would be polite for me to travel to him. But I have an autistic daughter and a 16 month old son. Driving an hour an a half for a three hour visit just to drive another hour and a half is just a miserable experience for everyone involved. He's in his 50's and never had kids let alone special needs kids. The world will never adapt for my family so its up to me to make sure I can make it reasonably comfortable for us even if that means pissing some people off. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-50830657833460109272012-11-16T11:46:44.580-05:002012-11-16T11:46:44.580-05:00AMEN!! It's the same with us. I feel as thou...AMEN!! It's the same with us. I feel as though I repeat myself 100 times a month when people ask us to go/do something. Family and friends just don't get it. However, we do have a babysitter who comes over once a month for 5 hrs on a Friday night. I feel lucky to have her. She has been a GOD send. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-39198582593793414492012-11-16T11:02:24.805-05:002012-11-16T11:02:24.805-05:00This is so true !! People don't realize how mu...This is so true !! People don't realize how much effort it takes to go anywhere for a long period of time, (more than 2 hours). Drawling stuff, toys, medicine,extra clothes, something for him to drink and eat, just incase he doesn't like what's there. A tray table to drawl on , folding chair, just incase the chairs where we go are too flimsy, my rock n roll son is hard on furniture ! AND seriously, do you get to socialize and have a good time ?? NO, you are constantly checking on him,chasing him, running him to the bathroom, and for me , trying to find someone with a knife to sharpen a pencil !! I drive a small gas gussling SUV, it's me and Josh and sometimes his older brother Sam. You need to buy a smaller more practical car, how can you afford gas ?? etc. Did you see everything I just pulled out of it ?? I travel like I'm on vacay everytime I leave my house ! And Josh has to have "his space" nothing but him and "his" choice of things on the same seat with him. He was so good last time ! Well last time was in the AM, which is a good time of day for him, late afternoon and evening is horrible, the phrase "Satans Spawn" comes to mind and I can control that in my home, or at least go to a different room for a little while ! We don't do amusement parks, anything crowded or too loud, Some company picnics are do-able because you can sit away from others and not be overwhelmed. If I know he won't like it, and I know it's too much I immediately say No, I'm sorry we can't do that, can't you get a sitter ? You need to get out more, you don't have a life ! This is my son, this is my life, it doesn't include "ME Time", and I don't dress up for it, but it's mine and I make the most of it !! :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5445812383851572581.post-24446239704021038922012-04-08T10:00:38.711-04:002012-04-08T10:00:38.711-04:00You took the words right out of our mouths! I onl...You took the words right out of our mouths! I only wish they would take a turn as Goalie so they can see how "but he did so good last time at the restaurant" really went down. Our son is amazing, but those moments mean we don't eat together, hot food, or socialize ourselves. Thank you for such a wonderful blog post that captures our point of view.<br />Sharri (Autism & Fragile X mommy)Anonymousnoreply@blogger.com