Monthly Archives: June 2019

No Dead Bodies Required - On Parental Effort in Disability

If you have an autistic child, you’ve seen the stories. Friends tend to tag you in them or PM you to share. They’re stories of autistic kids who didn’t talk but do now, children who sing the national anthem, young women who compete in beauty pageants, and those on the spectrum who graduate from college. And you don’t mind the stories, because human beings persevering in the face of adversity is a beautiful thing.

But invariably, somewhere in the story is a quote that goes something like this:

“When experts told her her son would never talk, never have friends, never graduate, she declared ‘Over my dead body.'”

Those quotes are all sorts of inspirational - for some. But if you have a child whose disability is severe, such quotes are felt like a slap. Because some disabilities cannot be overcome. They can be accepted, worked with, planned for, and accommodated, but no amount of parental love and determination can erase them. Callum is not going to go to law school. He’s simply not wired for that, and I can’t rewire him. The fact that I can accept that and love him unconditionally does not reflect him having not been raised by someone willing to try harder.

Because - over my dead body - will he be relegated as somehow less worthy for not doing the unexpected and unrealistic. The presence of an autistic adult in the world who doesn’t make the newspaper is not a statement of failure. Not of society, not of his family, and certainly not of himself. And other than steadfastly insisting he be given every reasonable opportunity any other person has to live, learn, and grow, no other declarations need be made - and no dead bodies required.

Why We’re Still Not Sleeping

When you’re raising a typically-developing child, eventually they stick to their own beds and no longer sneak in to cuddle. There comes a time they don’t want that constant touch. It’s bittersweet. But it’s okay, because you assume that one day they’ll have that need met again when they partner off.

But when you have a child whose developmental age is very likely to remain below five, there’s a good chance that touch need will one day no longer be met. Only it might still be felt. And that’s one of those things that can keep your eyes wide open at 3 a.m.

But to be best prepared for future supported living, we will have to teach him to sleep in his own bed (although that’s still likely more than a decade away).

Then I look at him in the light from the window. At peace in the certainty he is loved and snuggled up to the people he has no understanding will one day die. And that’s why I give in.

Because I want him to soak it up all he can while we’re here. I want him to remember our arms.