How being a special needs parent is like the Iraq War

Yesterday, I told you about "Including Samuel," a documentary primarily about a little boy with fairly severe CP who was enrolled in a typical kindergarten class.

Imagining a world where disability is normal and Malachi is seen as just another child would take a huge load off my mind — and I do think that inclusive education is a giant step in the right direction.

But I have to be honest and say that it's not the entire equation for me. Malachi's functionality and independence is important to me too. It's for those reasons that I've worked very hard ever since his diagnosis to find and implement as many therapies and interventions as I can.

Jessie Kirk Photography

Without that fire, that burning need to help him overcome this, I know in my heart Malachi would have less functionality than he has now and be set up for a more constrained life. (How much more? That I couldn't say.)

Beyond a doubt, my husband and I would have been happier if we could have just shrugged and said: "OK, cerebral palsy, cool, whatever." But here's the rub: Until a person is two years old, "more" (Again, how much more? No one knows.) can be done to rewire the brain than at any time afterwards. This is a biological function. It enables babies to learn lots of complex tasks like walking and talking without having to study, something I'm sure they would be very bad at.

So that puts me in this weird place of at once being Malachi's biggest cheerleader and his biggest critic. I did the best I could and gave him as many opportunities as I could and so mostly I feel OK about where we are now because I honestly don't think I could have done better. But many days I feel like screaming at Malachi — and, I'm ashamed to admit, some days I do — that I am working so hard to teach you to roll/sit/crawl. Why don't you know how yet??? Even other children with cerebral palsy can roll/sit/crawl by now!

So it's very hard for me to "accept" Malachi's CP when I'm working so hard to help him overcome it. As his second birthday approaches, though, I am beginning to feel like I can shift focus toward accepting him the way he is and urging others to do the same.

I'm looking forward to that time. I think it will be a relief in many ways. But I also don't think I could have skipped straight to it without jeopardizing some of his functionality.

For some reason this puts me in mind of the Iraq War. There was this huge burst of energy to try to "accomplish" an undefinable goal, lots of sacrifices made, small battles won, and probably some big badness avoided. But after all's said and done it's hard to claim "victory," because real life is messier than that. It's hard to know if what we did really made a difference or if we just want to believe it did.

At least we can draw down our "troops" in two years instead of 10....

(Tomorrow I have the final part of my thoughts after watching "Including Samuel.")


  1. Thank you for this. I was feeling rather terrible yesterday after yelling at Mason because he couldn't do something. Something that I have been working with him on for what seems like years. I don't know why the frustration overcomes me sometimes. I know that it is very difficult for him to do things and yet some days I get angry at him because he can't do them. This special needs parenting thing can be kinda rough some days :-).

    1. Tell me about it. It's so stressful and the object of your stress is sitting right there. It's hard not to lash out.

  2. I get mad at refusing to try, especially at things I know Julia can do, even poorly. I can accept that she can't do it, but blatantly refusing to even try - that just isn't acceptable!

  3. I agree! Sometimes Mason cries when something is hard for him - without even trying. I tell him that sometimes things are hard but you still have to try :-)

  4. Anonymous11:36 AM

    Ugh - this is such hard stuff. How do we balance being joyful, proud mom with being motivator and pusher of progress. I have to say the comparison pill gets harder to swallow when kids are older and even more "different' than others. And in some ways, easier, because they're on a path so clearly their own. Thanks for addressing this tough stuff.

  5. The hardest years, so far, with Sarah Kate were the early ones. I spent a lot of time pushing, pushing, pushing because the fear of school, integration into the real world, and the desire for her to be as normal as possible haunted me every minute of every day.

    Looking back, I realize that my mindset changed when she entered kindergarten. It didn't happen overnight, and school is tough (I still avoid field trips like the plague), but from the beginning Sarah Kate's differences were unimportant to her classmates. On the contrary, she's always been viewed as special in a GOOD way - kids fight to be the one to assist her.

    I realized that school was a microcosm of - or at least a precursor to - the real world she'll enter someday, and I have no doubt that she'll do fine. Will her life be more difficult than that of typical adults? Of course. But what she lacks in physical ability will be more than made up for by intestinal fortitude.

    1. Definitely. You and Sarah Kate are such an inspiration to me.

      I really want to get the boys into a school system that we can stay in longterm. I think young kids are perfectly willing to treat SPN kids normally and if they stay in the same class throughout their school career, they will never really see him as different.


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