Thursday, December 5, 2013

Words, words, words

In the middle of last month I took Link to a Fragile X Clinic here on the east coast, on Staten Island. I was exhilarated and nervous and cocky and proud and worried and all of those things that happen to me when I am doing something specifically related to having a kid with Fragile X. I have a kid with Fragile X. I don't say that in my head a thousand times a day like I used to. It isn't a hellish mantra that torments me any more. It's what is. And on that day, late in the fall, I piled small boy, his iPad, Buzz, Woody and a shit-ton of snacks into the mini-van and drove across the Goethals Bridge.

The clinic isn't nice. It's not pretty and cozy like the MIND Institute out West. The architecture of the buildings is very cool, very early seventies. But the landscape is drab and dark and the grounds all dry and the pavement is cracked and buckled that from the outside, it looks like an abandoned sci-fi film set. And once inside isn't much better. Naugahyde chairs, creamy-pale-green walls, shitty fluorescent lighting. Ugly.  But then the people started showing up. People offering coffee, compliments, hellos and perfect, welcoming smiles and instantly I felt aaallll riiiight.

The day was tough on Link. He put on quite a show towards the end, climbing on tables, spitting, yelling shut-up! The whole nine yards. Delivered promises of french fries smoothed out the edges and we were home and exhausted by the late afternoon.

Today I got the report.

Why am I never ready to read these things?!? Will this ever, ever EVER get any better? Easier? I want so much to be indifferent when the words on the page say things like: "… which places him in the cognitively delayed range of functioning."

Can I keep him here? With me? Just safe and so exquisitely happy and away from stark, bleak words. Words that we never speak here! Only out there, with everyone else do those words happen.

Diagnosis is (for me) the purest definition of a blessing and a curse all bundled together in an elegant & grotesque package. Diagnosis is both devastating and essential for progress. Without harsh, colorless words of diagnosis, you fight tooth and nail for services. For proper placement and appropriate educational settings. You stumble to explain WHY your child NEEDS. But with it, you simply slide the papers with the words across the table and… Like sneaky black and white magic all rustling together in a silver cloud, you get what your child needs.

I hate the report I have in my hands. I hate it. But without it...

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