Monday, July 27, 2015

AUDIO: Kyle Laughing In The Dark Before Going To Sleep

Here's a quick snippet of audio of my son Kyle laughing hysterically in the dark in his bedroom at 10:05pm on a Monday night before drifting off to sleep... And you can hear me trying to figure out what is so funny!  

"Let me in on the joke!"

He sounds so happy!

"I'll have whatever he's having"

:)




Friday, July 10, 2015

"Can we get some good news? We could really use some good news this summer..."

So let me say straight out that I'm not writing this post looking for any advice. 

I'm just writing to vent a bit and tell you guys a bit about how our summers going so far.  And I know that there's some people going through a lot worse things with their special needs kids right now, or in their lives right now.

None of this stuff I'm about to tell you about is life or death...but that being said, we could really use some good news this summer.

Ok, here goes

So I wrote back in June about a rough IEP meeting that we had that you can read about HERE

At that meeting we found out that our 12 year old son Kyle would not be continuing at the same school in September and would be moving up to the equivalent of middle school. 

We were under the impression prior to that meeting that he would at least stay at his original school over the summer for his summer school / extended school year (ESY) but because there was not a full-time nurse on staff at that one school over the summer (and he needs a full time nurse due to his epilepsy) they wanted to shift him to the new school for the summer, but in a multi disabled classroom for the summer. 

We have nothing against putting Kyle in a multi disabled classroom.  In fact there's times that we've joked about how we'd love to put him in a class with some kids with downs syndrome because they are usually so social and wont take no for an answer.  Kyle's has had some real fun times with down syndrome kids over the years who would lead him around at the playground.

We just weren't crazy about the school that they were going to send him to in September and so we used that as an opportunity to look at other programs around our area. 

We toured one school a few weeks back that we really really liked. It's actually a school for students who live at their residence. However they have a few slots available for "day students". 

We toured the program and at the tour we immediately felt at home when we heard lots of noise and commotion coming out of several of the classrooms.

Here is the school that finally our kid wouldn't be the problem child :-). 

At the school tour i turned to my wife and said, "seeing a school like this would've freaked us out years back but now this is the place for our guy...i feel at home here"

It just seems like a great school.  They've got several nurses on staff, and they are not going to call us for every seizure or every bad behavior.  These guys seem like they can work thru anything!

So we love the school and definitely want to send him there. They told us placement for September looks very good...summer maybe. 

Our school district seems ok with Kyle going there as well...

However, the decision as to whether Kyle can go to that school has to be decided by some New York State Board. This has something to do with whether they will open up an additional slot for a day student or whether that slot should be held for student who's going to live at the residence. 

So we are stuck in a holding pattern. 

And because of that holding pattern we made the tough decision to not send Kyle to school over the summer.  Kyle normally has a six week full school day extended school year.  

We just didn't want to send him to one new school over the summer, and another school when (knock on wood) we get into this great school.  Two new school adjustments in the matter of 3 months just seemed too hard/mean.

So for summer, Wifey put him in a great local special-needs day camp two days a week (that we are paying for) and he is home with her the other three days. 

And it's been a bit rough.   Rough on her, and rough on him...  Not horrible, but just an adjustment for the both of them...

And he's been having a lot more seizures lately... and so we had to schedule a neurologist appointment for this week, but more on that later...

And then earlier this week another school who had gotten Kyle's packet from our school district called to say "do you want to come and have a tour?" 

Since were in this holding pattern we said "why not". 

So yesterday I took the morning off of work and accompanied wifey and the king to the school tour and the neurologist appointment. 

And of course he had one small seizure in the car on the way to the school tour and two small seizures during the school tour and was trying to find a place to lie down and nap throughout the entire tour...  :-( 

And the school we like a lot, but not nearly as much as the school that we are waiting on. 

However this school from yesterday has an immediate placement for Kyle so we're considering it his "safety school". 

Unfortunately it's a 30 mile/40 minute drive away.  And as I've written before wifey has always driven Kyle to school and has never put him on the bus, a choice that we made for various reasons that you can read about here

However I told wifey "but you can't put 120 miles on the car each day so if we send Kyle to this school we are going to have to put him on the bus". 

So now we really want to get into that other school that we really like.   Did I mention that it's so close to home, like a 9 mile/ 12 minute drive away...

And now on to the seizures...

And the second part of our summer so far has been the increase in seizure activity and increase in naps. 

A while back I wrote a post called "This Is What Epilepsy Looks Like... Not Scary, More Sad" where I described what Kyle's life is like when his seizures are at their worst.  And basically things are now back to what they were like when I wrote this post

Quite a few small seizures each day = quite a few naps each day and in a way the naps really affect his quality-of-life almost more than the seizures do. 

So we had a neurologist appointment yesterday to check in and tell her where things are at. 

I was hoping that Kyle could come off of some of the meds coming out of this appointment since they don't seem to be doing much and see if we can decrease some meds and see where the seizures head.

However at the appointment the doctor said "when did you last have a 24 hour, overnight EEG in the hospital?" She looked it up "last June". 

"Well because of all the seizures he's probably due for another one so you should schedule one in the next couple weeks."

"Based on what we see on the EEG we probably will want to quickly take him off one med and put him on another so you should plan on him being in the hospital for at least three nights so we can tweak the meds quickly under hospital supervision" 

I said to her "is this something that we should expect every year to have to spend at least one night in the hospital for a 24 hour EEG?"

And she said "for a kid like Kyle and the type of epilepsy that he has yeah you should pencil in at least once a year. Always good to get a new look at what's going on up there"

So now we need to find 3 to 4 days in our schedule over the summer to squeeze in an EEG/Hospital visit.  

and then we have to weigh what's more important this EEG or fun summer activities.

For example, we're not going to make it get in the way of our annual upstate New York lake trip in August. That's for damn sure.  We all love that and look forward to that way too much to give that up.

And then we got things on our calendar in July and August that are little things but are still things that wifey and I really look forward to and/or the king really looks forward to.

Like we have the Foo Fighters concert next week, and maybe staying at wifey's brothers house out on Long Island by the beach for a couple of days, wifey's birthday at the end of July and, she's going to see U2 in concert at the end of July  

And then the King has his summer camp on Monday and Wednesdays up until early August. 

So while the seizures are scary and are affecting his quality-of-life we are not going to rush out and get the EEG done tomorrow and miss out on some of the fun stuff that we've been looking forward to and he's been looking forward to, especially since I'm not expecting some miraculous turnaround in the weeks following the EEG...  It'll probably be a slow improvement in seizure activity, if any...

So it was after a morning visiting a school that we like, but probably won't send the king to, and it was after an afternoon of waiting in a waiting room and then seeing a neurologist and finding out we have a 3 night hospital stay coming up...

It was after all of that in the car ride home from the neurologist office that I uttered the words you see in the title

"Can we get some good news? We could really use some good news this summer.  Wouldn't it be great if we heard that he got into that school today?  At least we could take that off our minds and plates"

And I don't want y'all to think that this whole summer has been joyless.  Wifey and I and Kyle try to make the most of our moments.

We went to the beach at the NJ Shore last week for 2 days as a family and had a real nice time.  We have a day trip planned to another beach this Sunday, and we have lots of Kyle friendly activities marked on our calendars this summer.

In their alone time during the week wifey is taking Kyle to the pool, and the beach, and the movies, and the playground, and for ice cream and trying to make their weekdays together when he's not in camp as fun as possible.

And wifey and I always find our fun too.  We're really enjoying "Orange is the New Black".  We have some respite tonight and are going out to dinner and a movie.  We're going to see the FooFighters at Citi Field next week.

Things are pretty normal around our house...

but we could still really use some good news, some good news about his school, some miraculous med that finally stops his seizures...hell I'll even take small seizures that don't make him tired and sleep for hours in the day...

anyway I've rambled enough... time for me o wrap this up so wifey and I can head out to the movies and dinner, and then probably veg on the couch for episode 9 of season 3 of Orange is the new black!

THE END

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  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

 _____________________________________




Monday, June 29, 2015

Today was a Rough "Manic Monday" for Kyle -- Includes video!!

My 12 year old son with autism has this week off from school and then his summer school / extended school year (ESY) starts next Monday. 

So this week is a bit of a wild card as I've got to work and Kyle has nothing major on his schedule so that puts a lot of pressure on Wifey. 

And day 1 is in the books and it was quite a Manic Monday according to Wifey. 

He had 3 small seizures this morning, but she decided to take him to the movies in the late morning. 

That went pretty well according to her but mainly because she asked if it was ok if she brought his big green ball into the theater. 

They said yes so he spent most of the movie bouncing on his big green ball  

After the movie they went to Wifey's sisters house where he proceeded to break a vase or something. 

Then they came home around 3:30 and Wifey had some respite because thanks to our Mediaid waiver she had our aide "Deirdre" scheduled for a few hours this afternoon. 

However Kyle's pattern these days is that he's very aggressive with her, even more so when Wifey leaves the room to do some laundry or go take a nap, even worse if she leaves the house to go shopping or sonething. 

Today wifey was fighting a migraine so she excused herself to go take a nap and Kyle proceeded to beat up Deirdre the whole time Wifey was gone. 

And Deirdre couldn't be nicer. She's a friend of wifey's.  They were in the same mommy circle of friends a few years back... And she's been working with Kyle for over a year now and he used to be all lovey dovey with her. Lately, however, he's been really rough on her. And it's really sad. 

Wifey thinks it might be that kyle is finally, after all these years getting very attached to his mommy. He is very lovey with his mom lately and she thinks that maybe he acts out when she disappears. 

After all those years of her wanting our son to miss her. This is not how we envisioned it. A 12 year old beating up this nice woman that just wants to hang out with him. 

Anyway Wifey excused herself shortly after me getting home from work, but first she said "if I were you I'd take him out for an hour or so...maybe break the pattern of wanting to be with mommy"

So I took him grocery shopping to get popcorn, baby food (this is how we give him his meds), strawberries, and milk. 

And he was LOUD in the store and he was holding his breath like a maniac. You can hear video of our supermarket trip here.




After grocery shopping it was after 8pm and he was happily manic the whole time. So we came straight into his bedroom, I gave him melatonin and put on his "Sesame Street Sleepytime Songs and Stories" DVD and watched him run around the room like a crazy person. 

You can watch that video here.




But like always, 29 minutes later like clockwork Kyle is always asleep before Bert & Ernie finish singing the "Imagination Song." 


I

t's now 8:43pm. Kyle is asleep. Wifey is asleep. And i've got two episodes of Nurse Jackie in the DVR that are calling my name.

So that's all I wanted to write. I just wanted to tell you about our Manic Monday. 

Goodnight all!

Autism Daddy OUT!

:)
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  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

 _____________________________________




Tuesday, June 23, 2015

Special Needs Parents, Don't Be Fooled by Your Friends' Happy Family Pics, It's All Smoke & Mirrors

My apologies to this family.  I don't know who they are, they just popped up when I googled "perfect family pic" :-)



I hear from lots of special-needs parents who sometimes complain about seeing their friends post pictures of their happy, typical kids on Facebook, especially in the summer and around the holidays. 

All those smiling pics of communions and graduations and backyard barbecues. All your friends with typical kids seem to be having the time of their lives!

As a special-needs parent it makes you want to pull your hair out sometimes or unplug your computer and throw it out the window or disconnect from Facebook. 

Well I'm here to tell you that those pics don't tell the whole story. 

Everybody on Facebook post only the best about themselves. That's kind of why my page was so rare when I started it.  Nobody really complains or rants on Facebook about their lives. They rant about politics but nobody talks about or shows the insanity that's going on in their household. 

So while you're friends with typical kids might seem happy in all those pics. Remember that those are the pics that they want to share with the world. 

But in each of those households is probably some drama, or some issues.  Maybe not as big as your issues with your kids and your family but these issues are big for them. 

Maybe that marriage isn't as happy as it seems in the pics. 

Maybe the kids aren't the perfect angels that they appear to be or maybe they have underlying medical issues or behavior issues that you don't know about and that the pics don't show. 

Now I'm not rooting for this. I want all my friends with typical families to have happy amazing perfect lives just like I'd want that for my special-needs parents to have happy amazing perfect lives.

 I'm just letting you all know that those pics on Facebook most likely aren't even close to showing reality.

And admit it you are guilty of that too. With pics of yourself and pics of your special needs kids. 

Come on admit it you only pick the best profile pics of yourselves. When you're all made up for a wedding. And the lighting is perfect and the camera is that just the right angle. That's the reality you put up of yourself on Facebook but that's not what you really look like. 

And as far as your special needs kids?  Admit it you took 40 pictures of your asd kid at the playground and posted the one fleeting shot of him looking in the camera and sort of smiling. 

So in that way you're fooling the outside world as well. 

And that's okay. 

Wifey is the master of that recently. 

She's been taking the king on day trips after school the past few weeks. To playgrounds, beaches, parks. 

And she'll whip out her iPhone and take 50 pictures of Kyle at each of these locations. 

Then at night when he's asleep she'll settle in with her iPhone and pick the best eight or nine and crop them and use those fancy color features on FB. And she makes really really artsy looking pics that all her friends love. 

And the King looks so peaceful and happy in almost all of those pics.






And I'll admit it I was even fooled. I would look at those pics and think "look what a great time they're having, look how happy my son is, I'm jealous, I wish I could be with them."

And then a few weeks back I went with them to a park with a scenic overlook. And found out that her photo sessions were exhausting

Kyle was still Kyle. Holding his breath, doesn't want to walk, wants to sit on the ground, pull blades of grass out, maybe nibble on a blade or two. 

But Wifey kept snapping pics and singing songs and getting him to smile once in awhile. 

Now I don't want you to think that she drags him places he doesn't want to be just to be a photographer. She drags him places to get him out of the house when the weather is nice and she tries to push him out of his comfort zone a little. And if she can get some artsy pics out of it, great, that's fun for her. 

But the park outing when I was with them was not in any way easy, it was no walk in the park :)

However the amazing pics she posted that night told a different story. 

So for awhile she had me fooled and I'm sure she still has most of her friends fooled. 

All this to say that it's okay to post the best of the best pics on Facebook. We all do it. I do it on Autism Daddy sometimes too!  I post these artsy pics of me & Kyle at a cool location like most recently the Highline in NYC




and people comment "wow it looks like he's having a great time"

Well in reality, he had an ok time, but he almost grabbed a woman's butt, and didn't want to walk back cuz he was tired, and he was starving but wouldn't eat the snacks we brought... but the pics didn't tell you that story...

So we all do it!   It doesn't mean our typical friends have perfect lives. And we all know we sure as heck don't have perfect lives. 

And even within our own home fool ourselves. 

We have an Apple TV and sometimes we push photos to the Apple TV while music is playing. The king likes to bounce on the ball to the Beatles while watching photos of our vacations. And the pics that we put up are the highlights of our vacations. Out of thousand pictures that we took :-) we curated the best let's say 60 and put them in an online album called "summer 2011" and there they play while the Beatles rock out. And looking at those pics gives us fond memories of those vacations because the pics we picked our all smiley happy moments. 

But boy was the summer of 2011 rough. That was our summer of rage with multiple meltdowns per day, lots of aggressive behavior and very little sleep. But seeing the pictures give us fond memories of that summer. 

And once again I think that is ok. 

I think all this fooling of each other is totally okay but I think it's only okay if we all realize it's going on and are aware that it's all just smoke & mirrors a lot of the time.... 

When you post great pics of your autistic kids and then two weeks later plead with your friends for some help are they going to be there? or are they going to think what is she complaining about her kid looks great & they're having the time of their lives this summer

So I guess I'm saying that maybe we should all post some reality every once in a while. 

So for you typical parents maybe post a pic of your house in disarray and maybe video of your kid striking out at the ball game every once in a while so us special-needs parents feel a little better about ourselves. 

:)

And special-needs parents every once in a while post a bit of what your special needs reality is. Whether that's a pic of the bruise you got from your kid head butting you or a quick video of a meltdown in a store...just so your typical friends have a reminder once in a while that things in your life aren't as rosy  as you paint them on Facebook. This way maybe when you ask for help you'll get the help you need. 

And all parents, typical & special needs, every once in a while post a profile pic of yourself looking the way you normally look, ladies wearing yoga pants with a big pimple & without make up. 

And men in your ratty shorts and ripped tshirt. 





Now that's the reality I want to see. 

;)

THE END



---------------------

  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

 _____________________________________




Monday, June 22, 2015

Video of Kyle eating dinner on a Monday night

Below is a quick video of the King eating his dinner tonight at around 7:30pm.

After school Wifey took him to a local beach about 30 minutes from home. 

I got home about 6:50pm, before them, and just as I was pulling in she texted me saying "can you make marinara sauce and keep some pasta on the side for Kyle and I'll make it with butter & cheese when I get home. He's gonna be starving but he's gotta go right in the shower first cuz he's full of sand...

So I did what I was told. LOL

To be honest me cooking is a rare occurrence but what made this meal kinda special is that we had the timing down perfectly. 

They pulled in, my sauce was ready, I gave him a shower, Wifey threw the pasta in the water and then jumped in the shower herself. 

And then right after this video the 3 of us sat at the table and actually ate together for 23 minutes. If it wasn't for the king's breath holding it would've been an A+ dinner but I'd say it was definitely a solid B+ maybe even an A-

:)

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