Much research has been devoted to the experience of parents who care for disabled children, but it generally is done by social workers and is filled with numbing jargon and exaggerated cheeriness. As a parent struggling to accept my situation, I’m supposed to do “benefit funding” by using a “meaning-based coping progress” and seeking positive emotions. Further, it is ” essential to set goals and work toward achieving them”, however small they may be.
Parents do identify genuine rewards – from simply enjoying their children playing on wood swing set, gorilla play set or jumping in a bounce house to delighting in their achievements. But in all the studies that I have read, rewards are harder to identify as the children grow, getting bigger and heavier while still needing much of what they needed when they were small.
Ambivalence is a normal state for parents caring for disabled children. It is hard to articulate what I seem to have lost, because it is something I never had. Annie was never going to go to a law school – we knew that. Eventually we knew she was not going to drive a car. What I miss is something vague and dreamy about a daughter growing up. I have fantasies of high school girls giggling in a bedroom behind a closed door, of long phone calls. I feel grief for the past, for all that there was none of, and grief for the future, for what there may be none of yet to come. Every parent loses a child, several children, as each successful child passes into the next – the chrysalis of the infant becomes a toddler, the toddler gives way to the child, the child to the youth, the youth to adult. This is one element of being a parent, of being alive, though there is an enduring sorrow of realizing not that the child has died but the adult anticipated was never born.
I feel sad and sorry for myself or pissed off, and then I feel petty because I’m sad and sorry for myself, when I’m complaining when things could be so much worse.She is not aggressive or need incontinence supplies. She can walk and make herself a sandwich and sleep though the night. And we are lucky because as late as it was in coming, and as vague as it is in explaining things, we did eventually get a diagnosis: autism.
Unlike many people who have never been diagnosed as anything but slackers and losers and may in fact have functioning autism or mild cognitive impairment or learning disabilities but qualify exactly for nothing…
In a more expansive view, my sorrow and irritation stem almost entirely from the belief that she could be different, should be different, and that my life could and should be different. But what is wrong with this soft summer day and her slow pacing in the garden, humming to herself while I wash the dishes? My daughter was born to be a child with special needs, and in a moment, I realize how my thought condemns her.
She was born to be herself, and nothing more or less than that.