Thursday, September 08, 2005

Living with a Child's Disabilities

I was thinking yesterday about how smoothly our lives seem to be going with afternoon help from a state-supplied aide. My son, who is now 8, had a sudden neuromuscular crash at the age of 13 months. We still don't really know what happened--we only know that he has neurotransmitter deficits. That we discovered after 5 years of searching for an answer--a new test became available.

Robert's decline was rapid: we went away for the weekend, noticed he was behaving a little strangely (wanting to be held all the time, having some trouble standing/crawling). We returned and the next evening, he couldn't sit up by himself. But these episodes of physical instability were parsed inbetween periods of relative normalcy--it was like a sine curve, with the waves growing ever shorter, until that irregular movement became his new normalcy. All of this happened over the space of about 5 days.

I could say that we were devastated, but that wouldn't even begin to articulate what we felt. We had a happy, active, inquisitive child. Suddenly he was flattened--no muscle tone, slow movements, difficulty eating, unable to sit, stand, or hold things without assistance. He drooled constantly. I think of Wallace Stevens' "The Plain Sense of Things": "It is difficult even to choose the adjective / For this blank cold, this sadness without cause."

Strange how many of my favorite poems from before motherhood, before marriage even, suddenly had this odd resonance. I also really loved Ben Jonson's "On My First Son": "Farewell, thou child of my right hand, and joy; / My sin was too much hope of thee, loved boy / . . . / For whose sake, henceforth, all his vows be such, / As what he loves may never like too much." And, of course, there was Wordsworth's Immortality Ode, and Jonson's Cary/Morison Ode.

Robert remains deeply impaired--or deeply 'involved' as the doctors like to say--and we all turn away from the word 'normal'. I try to use 'typically developing' for other kids--because Robert develops, certainly. His mind has certainly developed, with the aid of neurotransmitter replacement drugs (which help enable him to move his limbs some and have some muscle control, but which also cause spasticity)--he's now in third grade, and keeping up with math in a typical classroom (inclusion school), as well as learning to read. He has a great sense of humor.

His problems: cannot speak, cannot walk without a great deal of assistance, cannot pick up much of anything with his hands (although he tries), cannot take food by mouth (tube fed), cannot sit independently.

With much work we have gotten him to a good place--he's happy, he's learning, he has friends. We are working on an eye gaze communication device that might allow us to talk to him for the first time once he really learns to read. So far, our communication efforts are limited to giving him a few choices and letting him point; raising one arm for yes, one for no; and watching his facial expressions. This is the hardest part for me--knowing that there's a lot going on in his head and being unable to talk with him. That huge deficit has only been brought home to me more as my daughter, now 5, gets older, and we begin having actual conversations. I know her so much more than my son.

No comments: