Wednesday, December 28, 2011

When weak, go back to strength

Not too long ago I endured a ghastly IEP meeting (individual education plans...something all special-needs kids have to have to conquer school) the goal of which was to determine whether Gus needed Occupational Therapy at preschool. While all six people at the table where in agreement that the more in-school therapy the better, the great and wise (really?) powers that be see it necessary to march parents through long drawn out assessments (I alone filled out 6 pages of fill-in-the-bubble questions) then hit the attending parent over the head with it.

Good and hard hit after hit and for good measure enhance the torture with confusing language. it's a death march, I tell you.

The only thing I understood, as I was expected to ingest and understand two pages of tightly typed verbiage as five very busy people looked on, was that Gus scored in the less than one percentile overall...

...less than one percentile?
At first I thought it was a typo, then I thought it was my math-challenged brain misreading it, but there it was black font on white: >1 percentile.
I swallowed back the big ball of tears and rage and calmly asked for this to be explained...and explained it was... more than 99 out of 100 children, if pressed into this assessment, would score higher than Gus.
I'll save what happened next for some other post...I have plenty to say about IEP meetings and the wide swath of despair they almost always cut in a loving parent's already fragile hopes and dreams, but I don't want to rant tonight.

Tonight I want to talk about my > 1 percentile child. A four year old with many weaknesses - apparently - who shows me every day that we neuronormals (the 106 out of 107 who are not considered on the autism spectrum) forget that weakness should never be talked about without strengths being taken into consideration.

After six days around an extended family for the Holidays, including two adorable, neuronormal cousins, Gus and his differently wired brain rule supremely in my mind.
Here is why my child is NEVER < 1 percentile in my mind, no matter what assessment is waved in my face:
- Gus travels like a champ. He sits calmly. He knows the route. He asks for snacks and water at reasonable intervals. He watches one in-flight (-drive) movie, then takes a nap. He doesn't whine. He never ask "are we there yet?" (because he knows, where he is). Overall he travels better for 6 hours in the car than his 41-year-old mother, who has nothing to do and all the time in the world to read newspapers front to back.
- Gus NEVER whines or manipulates. It's not in his inventory nor in his vocabulary. He is either happy or he is not - and he lets you know when he is not. He always knows what he wants to do next and is usually game to other options without ANY back talk. He is a cool customer that way.
- He never gets flustered by too much or too little attention. He never asks for more than what he has. He is simply very happy when someone pays attention to him for whatever reason for however long is possible.
- He is rarely bored and if he is, he is easily entertained.
- Gus never hugs or kisses for something other than to delight in hugging or kissing someone. His very charm lies in the fact that he has none. He is what he feels and it is 100 percent sincere and selfless.
- Gus has few fears and the ones he has he bravely tries to find a way to deal with. Hiding behind Momma's legs or crying is simply not an option for him. Boxing his ears at the loud fast-food restaurant bathroom flush is, and so is whispering quietly that something "is not so bad." He is a brave little man for having only four years of experience to fall back on.
- Gus is generous and good about sharing. At the same time, he has the innate sense - and few of us neuronormals ever do - to remove himself from social situations when it gets to be too much.
- He NEVER wants something, because someone else has it.
- He loves to be all by himself and play just for his own enjoyment. He NEVER panders to a crowd.

There. Now that's a > 100 percentile kind of kid in my opinion. Lots of strengths. Take your assessment and consider yourself a < 1 percentile therapist/educator if that's all you got.

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