Thursday, November 13, 2008

50 billion questions for me

It seems my life lately is overwhelmed with questionnaires about Punkin. Many special-needs mommies have seen plenty of these rating scales for general development, sensory needs, behavior, socialization, and speech. Some have three options 0: never true, 1: sometimes true, 2: often true. Others use percentages: Given the opportunity, your child would respond this way 0% of the time, 25% of the time, 50% of the time, 75% of the time, or 100% of the time. Pages. Pages and pages of statements and numbers. And if you answer them inaccurately, your world WILL implode.
Let me give you some examples as well as some of my thoughts:
Poorly coordinated or clumsy. Not as much as a year ago.
Wants a lot of attention. Duh!
Stares into space or seems preoccuppied.
Hits others. Only three times today.
Holds his breath. When he takes a drink. Does that count?
Destroys things belonging to his family or other children. Only if it's made of paper.
Afraid to try new things.
Has difficulty paying attention.
Walks on toes.
Withdraws from splashing water. Definitely not. Doesn't know he should.
Touches people and objects to the point of irritating others. He's climbing on me again.
Doesn't seem to notice when face or hands are messy.
Craves certain foods. Do hot dogs count? Seriously every day three times a day.
Tires easily, especially when holding a particular body position. Sitting on the carpet....
Appears to enjoy falling. Gotta blog about this.
Prefers quiet sedentary play (TV, computers, books) Only on days ending in 'y'.
Wanders away. Gotta blog about that girl who's making him run away with her at recess.
Stares intently at people or objects. When it's crowded.
Has temper tantrums. That's one way of putting it.
Poor frustration tolerance. "MONNA! WHAAAA!"
Has fears that interfere with daily routine. Maybe it's more of a fear of breaking routine?

And even with all 125 (!!) questions on one of the surveys and 75 plus a word list on the othethere was still no "refuses to sit on cushions/leave cushions on a couch or chair" or "prefers sitting on potty seat on top of de-cushioned couch to lounging in a bean bag."

But there was a "develops unusual rashes." Any takers on solving this mystery? Not hives. Only on the backs of his knees.

Doesn't bother him at all, which I suppose doesn't mean much considering he walked around for an entire school day with a sock shoved in the toe of his shoe --which made him limp which made me take him to the chiropractor who found the sock after adjusting his little ankles and immediately crowned me Mother of the Year.

Oh, and the falling. So he likes to fall when I am trying to make him hold my hand. This is an escape mechanism. Then he starts falling off his bike at recess and pulling the bike down on top of him, then yelling, "Okay?! Okay?" to whoever is listening. Recently he's started laying on his side at the top of the stairs and letting himself bounce all the way to the bottom. Luckily there are about 8 steps and they are heavily carpeted. The question: is it attention seeking or deep pressure seeking? I think the bike is attention-seeking. But since I've given no notice at all to him falling down the stairs, I'm thinking that may be sensory related. I'm afraid to address it for fear it will increase exponentially.

So why am I filling out all of these forms? Because I am a glutton for punishment. I signed us up for a research project at the same time we started seeing a new OT. And with doctors come pages of multiple choice. *Sigh* I have to say the Sensory Profile surprised me a bit. I didn't realize quite how screwed up his sensory system is. We got the results today. The biggest difference between him and his peers is his social/emotional response to sensory input.

But the results may have to wait another day. I'm sleepy and I'm not sure I understand them beyond that he doesn't react appropriately to stimulation, whether it's a lot or a little. But we already knew that.


FXSmom said...

That looks like heat rash. Maybe he is sweating under his knees. If it is put some baby powder back there and it should help :)

Holly's Mom said...

All those forms and questions can be wearing... and they never make sence.... She did it once or twice, is that sometimes or never.... Things aren't so black and white.

Kristiem10 said...

I just completed another questionaire for a research study Drew is in. I know EXACTLY what you mean.

And as far as figuring out the sensory thing, we have that issue too, but with two boys and two different sets of sensory issues.

I agree about it probably being a heat rash. Looks like he was squatting for a long while and got hot behind the knees.

Sarah said...

I love this post. Those forms are too funny sometimes. When we first got Quinn evaluated, before we knew he had FXS, but we seeing worrisome delays, we went through this lengthy process involving three meetings, and the conclusion at the big parent-doctor meeting was: "Your son is delayed." "Yeah..." LOL.