Lately, there’s been lots of news about “curing” special needs—scientists pinpointing the gene for autism or discovering it’s possible to switch off the genetic material responsible for Down syndrome. If you love a kid with special needs, this can be troublesome to hear. So when when there’s research that will help our perfectly imperfect children, it’s reason to rejoice.
Oxytocin can enable children with autism to process social cues, finds a new study from Yale Scale of Medicine. Given as an inhalant, the hormone generated increased activity in parts of the brain associated with social connection. In another study released earlier this fall, researchers at John Hopkins and the National Institutes of Health identified a compound that bolstered learning and memory in mice with a Down-syndrome-like condition; they say it has promise for humans, too.
I’d do anything I could to improve life for my son, Max. He had a stroke at birth that lead to cerebral palsy. But give him a new life? That’s so hard to wrap my head around.
If you’d asked me, before I had a child with special needs, whether I would want to prevent autism, Down syndrome, cerebral palsy (CP) or any number of disabilities, I would have said yes, unhesitatingly. Then I had a child with special needs. And now, there’s no longer a black and white answer.
My son Max is not defined by his disability, but it is a definite part of who he is. I don’t look at him and see a child who needs to be “cured” or “fixed.” I see my child, a cheerful, funny, inquisitive, charming kid (with really good hair). Research that seeks to “cure” disability and wholesale eradicate it concerns me. What kind of awful (not to mention bland) world would we live in if everyone fit the societal mode of “normal?”
The research that seeks to help with symptoms, however, is welcome. If there were a way to permanently loosen up my son’s stiff fingers and feet, I would (CP) causes muscle spasticity). If there were a drug that could help Max better pronounce words—which he tries so hard to do—I’d give it to him in a heartbeat. Max knows that he has CP, but he hasn’t yet expressed to me how he feels about having it. He takes his condition for granted. Perhaps he will someday wish he didn’t have it. But as his parent, even as I try so hard to empower Max to the best of his abilities, I know I’d miss his disabilities if they were gone. He’d be a different child. Perhaps that sounds terribly selfish, even cruel; it’s hard to comprehend unless you are a parent of a kid with special needs—or a person with one.
Lately, I’ve been exchanging emails with an adult who has cerebral palsy and reads my blog. Yesterday, she wrote: “While there is a part of me that knows what I don’t have, and I used to grieve for it, I can honestly say that I am at peace with who I am now. Now, if I could have one wish granted, I would not ask for the ability to walk without my crutches. They simply don’t bother me anymore. There is a part of me that is afraid that if I wasn’t differently-abled, I would be a totally different person with a different personality.”
I knew exactly what she meant.
I would not want a whole other child, because I love the one I got.
From my other blog:
15 things special needs parents are thankful for
The anti-stress strategy that actually works
I am officially hired as Max’s spokesperson
Image of mother and child via Shutterstock