jump to navigation

Autism: One step forward, two steps back February 25, 2010

Posted by hopeauthority in Autism, Children, Health, Parenting, special needs.
Tags: , , , , ,
1 comment so far

What was that saying from science class?

Something like “for every action there is an equal and opposite reaction”. Well, I think there’s some real truth in that…especially when applying it to kids with Autism.

Take my kid, for instance.

Every time he has a big break-through in language development, it’s accompanied by an equally big setback in behavior. Seriously, every time one positive gain is noticeable, so is the accompanying glaring setback.

Do you notice that in your kids?

It’s almost like the section of the brain that gets fired up and starts cranking out new language suddenly sucks up all of the brain’s total energy supply so that it can fuel the language burst. Like it steals the energy from the other parts, leaving the part of the brain that’s responsible for behavior depleted and gasping for air.

Leaving me with a little monster… who. won’t. stop. talking.

I’m not complaining about the talking. After all, I repeatedly promised … in countless late night secret bargains with God… that I’d never complain about how much Fabio talked or anything that might someday come out of his mouth  if God would just let him become verbal.  And I am so thankful.

But the frustration over dealing with behaviors resurfacing after you thought they were gone for good can be overwhelming. Why does nearly every milestone have to come with a price tag? Isn’t there ever a win-win?

So, with little choice in the matter, we wait it out. We wait for the balance in the brain to be restored and the energy to flow evenly. We wait for the language to take root and the behaviors to level off.

For we know that when this little maniac transforms back into his more manageable self, he will be one more step further along in his journey from a simple exchange to a conversation.

Autism is like the Olympics February 24, 2010

Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting.
Tags: , , , , , , , ,
add a comment

The Thrill of Victory…and the Agony of Defeat.

My last post was clearly a thrill of victory one.

This one  is more of an agony of defeat kind.

Been going through a rough patch with Fabio. I recently messed with his diet in one of my very rare attempts to broaden it ever so slightly. Nothing crazy or not permitted. Just some things high in salicylates, which he is kind of sensitive to…so we avoid them for long stretches of time and then periodically attempt to reintroduce them.

That attempt sadly sent my little guy over the cliff just like that Olympic skiier whose famous wipe-out in the 70’s lived on for decades as the “face” of the agony of defeat.

He’s been having trouble in school attending to his work and focusing. He’s been aggressive and often full of rage when the slightest demands are put upon him.

During the never-ending month long week the kids were just off from school, I finally took him to the DAN chiro, who took one look at his eyes and said, “What did you do to his diet?” Then he looked at my eyes, full of tears. All I could blurt out before they ran over was “One of us needs medication.”

Every minute of every day so often, I second-guess myself about the choices we’ve made regarding Fabio’s care. The natural/holistic autism course we’ve taken. But deep down, I think it was right … for us.  Is right, for us. To me, it is more important that we do no harm. Even if the choice means that he doesn’t advance as far, as fast. It’s so easy to imagine that the other road would have lead to a happier place when we hit a bump in the one that we’re on.

So …to continue with my cheesy sports analogies…we’ve decided to stay the course. When the going gets tough, the tough get going …  I’ve removed all of the offending additions from his diet, and finally after a freakin week of insanity am now seeing  my happy little man emerging from the edge of the cliff he’d gone over.

So I’m forced to face that as Fabio’s coach and biggest fan, I can dictate the course of his daily routine and diet, guide him as best I can, and cheer loudly from the sidelines as he works so much harder than the average person, day in and day out. I can triumph in his victories and cry over his setbacks along the way. I can help make him the best that he can be. But there are factors out there that I can not control. All any of us can ask of ourselves …and those we love …is to try our best.

And if he doesn’t get on the podium this year, there is always next time. Training begins hard… again… tomorrow.

Autism and the School Play February 18, 2010

Posted by hopeauthority in Autism, Children, Parenting, school, special education, special needs, specific carbohydrate diet, Uncategorized.
Tags: , , , , , , , , ,
6 comments

“He’s going to be a horse.”

The note came home from his second grade teacher. The play he’s been working so hard for since October in his mainstream Music class was rapidly approaching.

A HORSE??

What the heck kind of play is this? Is it all horses? Is the horse a central character? And most importantly…can the show go on if the horse runs away?!

The note continues. “Must wear solid black, brown, or tan. A headpiece will be provided.”

HEADPIECE?!

You’re freakin kidding, right? Ok. Now, I’m starting to sweat. What kind of headpiece are we talkin about here? Doesn’t matter. I don’t see him even trying it on, much less wearing it for a 30 minute production.

Thirty minutes?

What are the odds of Fabio and his one other autistic classmate making it through this mainstream version of “The Tortoise and the Hare”…with about 35 other “typical” second graders?

Thirty minutes of standing in place on risers, many musical numbers with hand and arm gestures, taking turns, NOT running away, even in the face of all those parents and grandparents and their camcorders…and all the noise.

To date, Fabio has had bad experiences with stages. Graduation from his special needs program right before kindergarten didn’t go well. He was miserable, wouldn’t wear the cap, and was melting in the gown. And he refused to go up for his diploma. One of only 3 kids who wouldn’t. Ditto in two award ceremonies for reading since then.

But time has passed since those events. And Fabio has also had a chance to see his sister perform in several concerts and live theater productions in the community. He goes to the shows, sits nicely, and gives her flowers at the end. And he loves music. Maybe this would be different.

I figured I’d better prepare him in advance for the idea that we’d be coming to see this play. So a few days beforehand, while he and I were laying in my bed relaxing before bedtime,  I said in my happy but not too excited voice, “Mommy and Daddy can’t wait to come and see you be a horse in the show.”

“No.”

“Well, um, yes, honey. We are going to come see you just like the other mommies and daddies of your friends. Ok?”

“No.”

Time for a new approach. “Honey, Mommy and Daddy want to come see you just like we come see Nic (Sister) in her shows. We are so happy and proud of you and want to come see your play. And we’ll bring you a present.”

I see the wheels turning as he considers this. I brace myself for the request. Surely he’ll ask for some costly toy…

“Bring flowers.”

Did I hear that right? Flowers? For a school production? For a boy? Well, why the hell not! You got it, bud. And I secretly applauded his connection between his play and his sister’s plays and the ritual of giving flowers.

So we grabbed the camcorder, special treats for the after-party that he could eat on his diet, and of course, the freakin flowers, and we hurried off into the snowy morning traffic to get good seats for whatever was in store for us. And we waited. All the “typical” kids came in and took their places. All the kids in the classes of those kids came in and took their places.  All those kids’ parents and grandparents came in and took their places.

Where is he?

Then, bringing up the rear… like a cowboy hearding cattle… marched my “horse” with the horse headband on! He went right to his spot on the riser. The music began.

He was perfect. PERFECT. He was typical. In fact, he was better than typical. No one there would ever have guessed that he or his classmate beside him had autism.

I started to cry. My husband started to cry. His teachers and aides started to cry. His former teachers who came out in the snow from other schools and from maternity leave just to see him…started to cry. And for about 30 minutes we all watched in awe as he did every single thing just right. And he radiated happiness. The little black horse with the headpiece on his head.

And when it was over and the tears were dried, that little horse rode off into the hallway… carrying flowers like a champion.