Thoughts about that Growth-Attenuation Therapy article

Big discussions going on with my friends on Twitter and Facebook about this article:

Should Parents of Children with Severe Disabilities Be Allowed to Stop Their Growth?

I’m just gonna go ahead and drop myself in the NO column right now. No, you shouldn’t screw with your child’s body for what is essentially the sake of your convenience.* That is putting the child into the bin labeled BURDEN. DIFFICULTY. PROBLEM. The kid is different and has different needs, yes. The kid is not a doll. The kid is not A Thing that you can or should adjust as you please, because it’s easier for you. I don’t care if you’re the primary caregiver and you’re worried about the future. What we need to do is change and expand the system of support for kids like this, not smash the kid up so they’ll better fit into the current underfunded and underchampioned system — the system which is not built with them in mind, but as imperfect afterthoughts. As burdens, difficulties, problems.

(Note: I don’t mean to crap on anyone who is doing this work now. I admit I’m new to it. But I am learning. I’m getting a better sense of what is available and what is not. And kudos to everyone who expressed more succinctly and thoughtfully ideas about the need to adjust and fix the systems/supports rather than the kids themselves.)

But at the same time, as the mother of a kid who is heading down this path, I understand this parent quoted near the end of the article, in conversation with another parent who has done this to their child:

A couple of years ago at a Parents Reaching Out conference at Ricky’s school, Cindy and Ricky’s caregiver, Jessica Covak, were chatting with the parents of a boy in Ricky’s class when the father expressed sadness at the prospect of not being able to pick up his child when he got too big. 

I can identify with this dad (who in the article, it should be noted, is expressing a common feeling among parents of all kids, and isn’t necessarily expressing interest in the growth-attenuation procedure), oh boy, can I. I’ve felt this way, too. I worry every day about Baby E.’s future, too. I worry about abuse, and future caretaking facilities, and my own ability to pick him up or move him around without injury. But this decision treats him like a doll, a thing. He is who he is. I do not get to fit him into an ideal form for this very-not-ideal situation.

And to rebut the But he can’t make decisions because he’s got a 6-month-old’s brain function, I can use Baby E. as an example again. We have some predictions, but nothing cold and hard. His cognitive abilities are still murky, as is the ultimate prediction of how they’ll develop. What is it the doctors keep telling us? The brain is very plastic. Wait and see. Wait and see. Wait and see.

forever

In sum, what we have here seems to be another failure of humans to deal with the shitty uncertainties of life. I know, parents, I know. I hate it, too. It’s hard as hell. That still doesn’t make this okay.

 

 

*physical, mental, emotional. It’s all there.

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