Tuesday, July 26, 2011

Happiness vs Progress......?

Typical text back & forth between me & wife…

“How was the ride to school?”
“You don’t want to know…  but once he got there he seemed happy…”
“How was his day at school?”
“They said ok til the last hour, but they  survived it”

“Leaving work now, should be home 630ish”
“Good, cuz I’m going to sleep as soon as you get home.  Rough afternoon…


So that’s currently a typical day in our lives with Mr. Kyle these days.

The key words are rough, survive, and happy.

My big question of the day is how can Kyle make any progress if he’s not happy.  As I’ve stated in previous FB Notes, Kyle hasn’t made any real progress is years.  And people (including you guys :-) are always saying you should do social stories or you should do PECS or you should try this or that.

But I feel before we can try anything we need to get a somewhat happy cooperative kid who kinda wants to learn…or at least wants to sit still for more than 9 seconds… or at least a kid who has some real reinforcers that he will work for.

When Kyle thinks you are asking something of him, making him work.  Even something he knows like “point to eyes”, he gets this pained look on his face and he starts breathing heavy and he will try to get out of the situation.

So  much of our lives the past few years are let’s get past these stomach issues and then when he’s in a good place for awhile we’ll start _____ .  Fill in the blank (potty training, dressing skills, etc).  Let’s get past these tantrums and get back to a happy kid and then we’ll start _____.

And the school kinda does the same thing.  “Kyle had a great day” doesn’t mean he mastered 3 things in ABA or pointed to his name in circle time.  It means he was happy all day, didn’t tantrum, and ate all his lunch.

It’s kinda been going along like this for the past 2-3 years in school and at home.  He does do a little better in school, but the skills he learns in school rarely if ever make it to our house.

So the question is… should you ever get to a place where you give up on “teaching” and just work your hardest to have a happy kid?  I don't mean forever... but how do you expect to see any progress during the crazy times?  And what happens when the crazy times take over?
This note is all over the place.  I'm gonna end it here.  I might have more to say.  If I do, I'll add it in later and/or add it to the comments...

facebook commnets 1/5/12

Monday, July 25, 2011

Pulling Back The Curtain On Autism... no miracles here...

I've kinda touched on this in previous notes & comments, but something made it pop in my head again so here goes....

People are always sending me links to feel good stories about autism. They mean well, but they don't know the true side, the tough side...

And lately when autism is on the news it's a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad. Theyre just a little quirky like the aspergers rocker on american idol.

I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-pottytrained 8 year old who bangs his head, won't eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.

I like to read the feel good stories too...but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, "why give them research $$, they're just quirky kids...." the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc..."

I know there's always a lot of controversy around Autism Speaks and I'm not a fan of alot of what they do, but I will say this. I have no issues with AS with the way they portray autism. others in the aspergers community feel that AS doesnt represent them, and maybe it doesnt. but it does seem to represent those with severe debilitating autism. my son has SEVERE autism...

What also gets me is when people tell you about something they read, like music therapy or horse therapy or dolphin therapy.

"Have you heard about that? I've heard great things about that..."

They're thinking that it's a way towards a cure or healing these kids...

And while my son enjoys music therapy and might love horse & dolphin therapy, we know it's just another fun activity and in the best case scenario he'll pay attention and maybe get something out of it... but we're not expecting something magical or miraculous to happen

Like we got our autism service dog, Paula :-). And we were realistic in our expectations. We hoped that it would help with some safety issues and maybe Kyle would build a relationship and have some empathy towards another creature. And it's worked out nicely. It's still alot of work but totally worth it.

But people ask me about the dog DAILY. And I can hear in their voices when they ask the questions that they were looking for / expecting a miracle.

No miracles here!

Wednesday, July 6, 2011

I Want A New Drug? For breathing episodes....

So as I've mentioned in a previous FB Note Kyle does this crazy breath holding and heavy breathing thing.  It's been going on for over a year and has really reached a head.

Read the original note about this at http://www.facebook.com/note.php?note_id=227130863981388    if you want the whole story.

Anyway, so after having our house tested for mold & seeing a pediatric pulminologist within the past 3 weeks because of these breathing issues we ended up back at Kyle's psychopharmacologist to see if she had a medicine suggestion.

She suggested a very low dose of Klonopin (clonazepan) which is an anti-anxiety med and a slight muscle relaxer.  Hopefully this will help with the breath holding / heavy breathing and maybe even help reduce the tantrums / meltdowns.  There's been some success in using these types of drugs with kids with Retts Syndrome who have similar breath holding episodes. It all has something to do with GABA levels...

We don't jump into medication lightly but this feels very necessary because several previous blood tests have shown that these breathing episodes are restricting oxygen to his brain.  Also, and maybe more importantly in Kyle's case, because the act of holding your breath and pushing out your belly requires some thought and concentration, we are concerned that ALL of Kyle's thought and concentration is going towards this and that's why he's made little to no progress in the past year or so....

So we'll be trying a new drug within the next few days.  As usual, we're not expecting and miracles, but something to mellow him out a bit and make him forget his breathing "stims".  Hopefully if it works it will be a short term solution...

 Wish us luck!!


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