I posted this on my FB page yesterday:
No matter the circumstance, no matter the inclusion of hypotheticals, the word "disability" used in reference to my son will always be like a cattle prod to my heart. He is not disabled; he simply goes about things differently. I'd like to think he's just got things figured out better than we do.
Right now, he's playing with a litany of children and they're all following him in a ridiculous game of "Run-to-the-top-of-the-slide-and-scream-your-head-off." His joy gives me joy, and no label can take that from us.
We had just finished the first part of our whirlwind day - the Child Study Team. John and I were thoroughly displeased with the results of that meeting; absolutely nothing was accomplished. As I had feared, it was simply an introductory meeting that established the need for evaluation.
I hate the backwards way our system works sometimes. I had specifically stated I wanted him evaluated when scheduling the appointment. I didn't need to be introduced to their program because I had read all about it online and had asked the case worker about 100 questions before even agreeing to come in.
I get not all parents are as prepared and pro-active as I am, but geez. Don't make me wait a month for a meeting only to tell me that I'll need to wait another three months for the evaluation I specifically said I wanted to begin with.
That sorta thing makes me so frustrated and angry that I'm tearing up just thinking about it. This backwards method is basically saying, "We realize you're in a tough spot and have no real options outside of us, but ya know what? We don't really care. You're on your own until after the New Year because we're legally given this amount of time to twiddle our thumbs."
WHY WASTE MY TIME with a meeting that's sole purpose is to schedule a secondary meeting? WHY?! Tell me what sense that makes!
ARGH - that sort of bureaucratic nonsense makes me want to stab forks through my temples. I hate having my time wasted. I took off from work to attend this meeting only to be told I'll need to take off again three months down the road.
And while this brilliance was being passed back and forth in a tiny room crammed with 5 other adults, my son was happily coloring and showing off his art skills to anyone willing to listen. Everyone politely humored him, but they started throwing out words like "disability" and "special issues" and I instantly felt my stomach clench. I wanted to lash out at them and say, "No. My son does NOT have a disability. He learns just fine and is able to do everything other kids his age can do - even more if we're talking about math or basketball! He does NOT have a disability. His abilities just need to be arrived at differently than you might be used to."
I didn't, of course. It's not as if they were accusing Vincent of being slow or deficient, but how can I not instinctively throw my heart in the line of fire when such labels imply he is somehow broken... something less than other children?
He is not broken. He is not deficient. When the teacher asked him how many beads were on her string, he said "11."
She said, "No, Vincent. Let's count. One, two, three, four, five. Five beads."
Vincent pointed to the other necklace she was still wearing (with matching beads) and said, "Eleven."
That's right. There were 6 more beads on the other necklace that she didn't account for.
Vincent's not deficient. He's not disabled. He just thinks differently.
And God bless him, he was so good throughout the 45 minute meeting. The speech-therapist was surprised he spoke so well given the 2 years he spent mostly deaf. Obviously he's behind his peers, but he picked up in two years what those same peers took four to master.
He's NOT deficient. He's NOT disabled.
Just hearing those words be used - even hypothetically about him (since they hadn't done an eval)... I just hate being thrown into a world I don't understand. I feel like my son is being looked at as a list of pros and cons on a sheet of paper. They see such things as "hyperactive," "loud" and "impulsive" and miss out on his constant affection, his zest for life and his desire to experience 5 things at once because he's just so excited to learn something new.
It makes my heart hurt to think there is anyone in the world seeing him as somehow defective... as something less than the perfect little boy I've been so blessed to have grow up before my eyes.
And maybe it's all just in my head. I'm sure these folks aren't out to get him. I guess this is more a venting post than anything else. I'm venting my fears and frustrations at a system that I don't trust can help my son. And maybe that's because right now, I'm a deer in headlights and the glaring light is distorting my perception of escape routes. I just want to do right by him, and I am terrified that I'm just not going to figure it all out fast enough.
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