I’ve seen quite a bit lately on Twitter about grieving your child’s special needs. Most often, this applies to autistic kids (kids with autism? I won’t get into a semantic debate with anyone), but it also pertains, really, to any disability – whether “visible” or “invisible.” And I think it’s a load of crap.

This whole “mourning the child you’ll never have” thing isn’t for the child. The child wouldn’t know any different – it’s who they are. No, it’s for the parent. And it’s not focusing on the child you have, it’s focusing on some imagined normalcy.

I suppose you could say that Jessica and I mourned Namine. On our own terms, in our own ways, we had to deal with the news of her heart defect, of her caudal regression. (We knew that Pierre Robin sequence was a possibility, but we didn’t know what it was called yet, just that it meant a regressed jaw and possible airway problems.) But we didn’t make a big deal out of it. We didn’t really talk to anyone other than each other and close family members. We didn’t even call it anything. We just dealt.

Namine is not a normal child. I wouldn’t want her to be a normal child. She was born, as every child is, under her own circumstances, and I want her to be her own person, wherever that may lead her.

And while I’m on the topic of “not the child we thought we’d have,” Namine most definitely isn’t. She has far surpassed what doctors promised us would happen – she isn’t dead, for one. Doctors thought she would die. They thought she’s have a trach for her whole life. They thought she’d have a g-tube until third grade at the very least. But here we are, Namine is three, she has a healthy heart – and no signs of needing the Fontan for quite a while still – no trach, no g-tube, and having started school.

Grieve the child she’s not? Like hell.

  • I’m sorry, it’s from @RaisingASDKids

  • Iliana

    Much of the talk about “the child that never was” does pertain to autism, and it’s because there’s a (rumor? misconception? I’m not exactly sure what you call it) perpetuated by so-called advocacy groups like Autism Speaks, that autistic children were “kidnapped from their bodies”, that they are “trapped behind a wall”, etc. (Not to mention that autism is an illness in need of a cure. You want to talk about putting a stranger in my body? “Cure” my autism and that’s what you’d end up with.) The idea that autistic people are just that, PEOPLE, gets lost in all that. I think, although the attitude is less prevalent, that it’s the same thing that happens with people like Namine. Too many people see only the disability and fail to see the person attached, and so the idea of grieving for the child comes naturally, because they don’t really see her as a child, at least not in the same way they would see a child without a disability.

    Beautiful post all around. Your daughter is lucky to have an advocate like you.

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