Its 2:22am and Charlie is up. Again. I finally got him to stop doing laps in the hallway. Now he sits in his bed, in the dark, flipping pages of board books I placed next to him. Occasionally, I hear him singing. There are no discernible words, but I can tell which song it is by the hand claps. He's doing B-I-N-G-O now.
I am so tired.
Charlie, without fail, decides he only needs 5 hours of sleep a night during the busy stretches. Maybe that's not an accident, that during more chaotic periods of family life he just cannot sleep more than that. But as the laws of parenting would have it, the times when we need sleep the most, we don't get it.
Charlie now attends a sensory gym twice a week. Imagine the best possible scenario for a room with padded walls. Some of the equipment looks a bit archaic and frankly, quite frightening, and yet it is the most stimulating/soothing (depending on your sensory thing) experience. There's the steamroller- padded dowels that look like an old fashioned clothes wringer, that one can roll over, or roll though, compressed between the dowels. I imagine Charlie sliding out looking like Flat Stanley. He loves it. He loves being pressed. He loves lying on the floor while someone takes a yoga ball and rolls it one top of him while pressing down with all of their weight. Then there's the bag of balls- a swing, really, filled with little plastic balls, that you sit in. And the bench swing with three chains so you can swing in a circle. Since Charlie just started, he doesn't have a routine yet. He zips from one station to the next, with his therapist trying to keep up with him.
The sensory gym is like a hidden gem, or, if one is feeling dower about their situation of parenting an autistic child, its a prescriptive, pubic health version of the large ultra-trendy urban indoor play spaces with child hair salons and mommy and me yoga. Charlie's gym is located in an office building near Columbus Circle, one of those relics with windows stained permanently from car exhaust on the outside and cigarette smoke on the inside. After signing in at the nondescript lobby, and taking the elevator to the nondescript 5th floor, we enter the nondescript waiting room. Linoleum floor tiles, and loads of chairs, but not a single thing a sensory-seeking or avoiding child would respond to. But behind the nondescript door... Charlie pounds on it when we show up. He rattles the door knob. He starts to do his little grunts and vocalizations. Until someone opens the door. He barrels his way in, so incredibly happy. That's how the therapist who works with him at the sensory gym describe him when they re-emerge in the waiting room 30 minutes later. "He is such a happy little boy!" she says. He really is. We are lucky. In the mix of everything, we have a very happy son. Now if he'd only sleep.....
4.28.2007
4.08.2007
Emi-ism Archive
I'm replacing Emi-isms with "Exchanges with Emi". So here's the Emi-ism archive:
Emi-ism #61: "Mommy, I don't know how to be nice. I want to be nice, but my body is not controlling myself."
Emi-ism #59: "Charlie and I are twins because you know why? When I smile, he smiles."
Emi-ism #56: "I have super powers, you know. But I never use them because they're really, really secret."
Emi-ism #55: "I had a beautiful dream about nails. That our nails were as long as monsters. And there was this magic water that made our nails long and a fairy had it and she said, 'No more short nails until tomorrow.'"
Emi-ism # 48: "Crying reminds me of the drawing I made that I erased before I got to show it to you."
Emi-ism #47: You can be the fairy happy mother. I'll be the fairy love mother."
"I'm just into sugar, mommy. That's who I am. And I like it."
Emi-ism #37:
"(Bike) pedals are like see-saws for my feet!"
Emi-ism #23:
"An umbrella is like a trampoline for raindrops."
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