Raising Kids with Disabilities

Reader “T” reminds us of Matt Baldwin’s fantastic post from a couple of years back, discussing the discovery that their 18-month-old son had been diagnosed with autistic spectrum disorder.

But his “gaze avoidance” tendencies are unmistakable, and he makes very little effort to communicate with others. He knows dozens of words but only uses them for labeling. Show him a banana and he’ll say “banana,” but if he wants a banana it apparently doesn’t occur to him that saying the corresponding word to us might provoke a response. When he is in the company of other toddlers he plays around them rather than with them. And he rarely engages in imitative play.

The post culminates in a beautiful rumination on what loving his son is like for Matt—it’s apparently a lot like going overboard at Arby’s.

When I was young, my mother, step-father, and I all lived in an apartment attached to a mental health care facility, taking full-time care of a dozen mentally retarded patients. (And yes, I know that mental retardation and autism are far removed, but that’s not my point.) I recall one man, whose disability had left him bent in a wheelchair, but still relatively sharp, mentally. His parents had put him in the care of the state after many years of trying to take care of him at home.

They were nice people who genuinely loved their son. They’d visit at least once a month, often bringing small gifts for their son and I to play with. (One of the best things about being a kid who lived with MR patients was the vast number of toys they owned. Their closets were like state-funded toychests.) Once a month might sound infrequent, but considering how many people are dropped into the state health care system never to see their parents again, it was far from the norm.

For years I’ve callously said that I paid my mental health care dues as a child, and that’s true enough if I were talking about working in the field, I suppose, but I’ve often gone on to brag about how I’d never let a mentally retarded child of mine come to term. No tip-toeing through the eugenics garden for me, no sir. If any child of mine was less than perfect from womb on, I’d hit the reset switch and try again.*

The notion is not entirely without merit, although it’s cruel, and I often take foolish pride in my cruelty, or at least the veneer of it. Reading Matt’s story, feeling the unfair worry about his son’s future, makes me realize that those who take care of children with health problems do it not out of a sense of duty but of plain ol’ all-consuming love. So many people, when faced with the challenge of raising a kid with a disability, fail completely. Those who don’t give up should be lauded and admired.

ASD [DefectiveYeti]

^{* No gay son of mine is going to be not gay!}