On being a part of a health community

I read a post on Huffington Post by a mom who has a kid who is approximately as disabled as my middle son (also due to a Ridiculously Rare genetic syndrome) and only slightly older. It’s titled “6 Things You Don’t Know About A Special Needs Parent.”

So I guess it purports to speak for me, and some of it does. I, of course, am tired. My kid averages 6 hours of therapies a week, three doctors’ visits a month, 3 surgeries of wildly varying severity a year. Plus paperwork, advocacy, logistics (how do you take a kid who can’t be in a baby carrier and can’t walk and can’t sit up in a cart to the supermarket, etc. etc.), doing the homework assigned by the therapists (20 minutes a day in the gait trainer, brushing, massage, reading, teaching puzzles, training to feed). And just being a mom with him. It’s basically a very intensive , time-consuming, emotionally consuming part-time job, on top of my actual job and my other two kids. And of course, like the author, I have plenty of interests and desires unrelated to my son.

A lot of it doesn’t speak for me, though. As it happened, three of my closest friends had healthy babies within three months of him, so I see them doing all the things he should be doing now. Doesn’t really bother me. Not that I never get sad about my kid’s disability, but just not in that way. It never even occurred to me to be bothered when people say about their pregnancy “as long as it’s healthy.” Indeed, I said it probably on a daily basis when I was pregnant with my subsequent (healthy) child. I don’t really care how people ask me about my disabled kid, and (as my friends are well aware) I have no problem blathering on and on about him. And it doesn’t bother me when people brag about how well their kid is doing. I don’t know if the author has other, typical kids – that may make a difference.

There are things that get under my skin that don’t seem to bother other special needs parents. When people say to me in a reassuring voice, “God doesn’t give you anything you can’t handle,” I want to scream. Yet other special needs parents I know say it to each other all the time, so obviously it doesn’t bother them. While I support advocacy for people with developmental delays, the spread the word to end the word campaign is not what I’d judge a best use of resources.

When you or someone you care for gets a diagnosis, you get put in a group. It can feel ill-fitting, at times. Part of me knows what Barbara Ehrenreich felt like when she ranted against the pieties of the breast cancer community after her diagnosis.

It’s sort of like a family. You’re coming from the same place, and you have a lot in common. You need to be in contact with them to save your sanity, since only they know what you’re going through. I’m facebook friends with well over 100 parents of kids with my kid’s syndrome, and it has been so helpful in terms of advice and knowing what to expect. For example, many parents reported a temporary and minor bout of depression after having their first healthy children after their disabled children. I would never have expected that, but when I went through it, it immediately felt normal. One of my closest friends is now another Ridiculously Rare syndrome mom, and I love having her to talk to and bitch about everything with.

But it’s also like family in that you don’t have everything in common with them. And sometimes they speak for you, and it’s not you.

Having said all that, I’m going to speak on behalf of special needs parents. I’m actually reasonably sure that most parents of disabled kids would agree with this (although of course there may be some of you who don’t!). I live in a part of the country where strangers smile at each other and chat with each other in stores. If I go out with either of my typical kids alone, strangers talk to them and to me about them. When I go out with my disabled kid, people glance and quickly look away. I’m sure they are uncomfortable, and I’m sure I would have done the same thing, and I’m sure it is born of a desire not to stare. And of course, it is much better than, say, staring and pointing! But once a while, someone seeks my disabled kid’s attention and says hello to him. And I am just thrilled and moved and it makes my day. (NB: it often takes a little while for information to mosey around his brain, so a response often comes a good 10 seconds after a greeting. Please stick around!) If you want to make a special needs parent happy, and it’s generally done in your neck of the woods, saying hi is very nice!