“I been talkin’ to Jesus, but he’s not talkin’ to me…” ~Guster
Wednesday morning I met Andy and Jonah at the Retina Care Center at 7:30am for Jonah’s eye exam. The last couple times Andy tried to drive him, they never even made it to the building because Jonah was violent, so we hadn’t been there for a while. And even though we always ask for the first appointment of the day and it is the crack of dawn, there are always about 9 other patients waiting; I don’t think Jonah’s ever been the first patient actually seen by the doctor.
The staff knows Jonah falls apart quickly – they’ve certainly seen it many times before. And when I say “falls apart,” I mean falls the fuck apart, aggressing so that Andy has to get him out – biting, scratching, kicking and thrashing – and screaming so piercingly, frighteningly loud you could sell the sound as a special-effects scream for a horror movie.
But Jonah did well this time. He only needed to be re-directed about 40 times during the course of our 15-20 minute wait. He begged repeatedly for “ride brown car-ah,” dumped the container of glaucoma brochures, nestled his little face against his daddy’s, asking for hug?, yelling MEOW, walking over toward the exam room and back to mama, announcing boobie!, flopping and flailing on the carpet at least twice. All this on medication to calm him.
(My friend K just e-mailed to tell me it looks like Thing from The Addams Family is crawling on Jonah’s head, and I laughed my head off. It totally does. Creepy!)
It’s funny how you go from being embarrassed by your child’s behavior to not really giving a damn if people think you’re bad parents or your kid is an unruly retard. It took me a good while to get to the place where you don’t give a damn. It feels better here.
When they finally gave Jonah his eye exam, though, I was impressed at his cooperation to deal with the dilating drops, more waiting in another waiting room, sitting in a strange chair in a small exam room in the near-dark, holding the black plastic thingee over one eye, reciting his letters. (How do they get this information from non-verbal patients?) He tolerated the different slides of smaller and smaller letters – with both eyes, even. The doc told me later that his eyes were about 20/25. After she examined his eyes in another exam room (with fancier equipment he also tolerated admirably), Andy and Jonah went bye bye doctor and I stayed behind to talk with her.
She’s kind, sharp and smart; she was the one who operated on Jonah’s left eye. I trust her. I made an appointment for October and left, holding the card in my hand, thinking the next time we bring him, it will be after picking him up where he’ll be living, an hour and a half away, at the Anderson School for Autism. Halfway down the hallway stairs I stopped walking and turned the card over and over in my hand. “…where he’ll be living, at the Anderson School for Autism…”
I revisited the thought from a place of detachment, kind of the way you do when you first hear about the death of someone close. There isn’t a right way to react to all that has happened during this past year. I’ve gone into a mode where I’ve ceased to be surprised by anything at all, where every part of me knows that anything can happen, at any time, to anyone. Everything comes at us so quickly now, and there is a sense of unshakable urgency.
Yesterday after work Andy and I took Jonah for a car ride, and on the way home there was a beautiful rainbow. (Whenever I see a rainbow, I stop whatever it is I’m doing to take a picture – even if it means running out into the parking lot at work and getting all wet to do it). I pulled the car over and took as many pictures as I could before I started to feel like that double-rainbow dude on Tosh.O.
Thanks for sharing with the rest of us. I’m following along and thinking of all of you:)
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I cannot imagine what your life has been like for the last 9 years. One of our son’s has Aspergers, and the biggest challenge we’ve had this summer is getting him outside. He tells us “I’m an inside kid”
It seems like you’ve gotten to a place of acceptance about the situation and hope that the future is full of rainbows for everyone.
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Just wanted to drop in and say I miss you!!! At least I have the blog to know that although you are struggling you are still the wonderful Amy I know!!!!!
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May life’s rainbows sustain you through the inevitable cloudy, stormy times.
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