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!
When I read the title “6 Things You Don’t Know About A Special Needs Parent”, I think of people who experience disability having children. I’m sure that’s just me though. From my experience, most typical folk don’t automatically assume people with “special needs” are going to have children.
Thank you for the thought provoking post, Rose. I work exclusively with adults with I/DD and consequently do not have any experience with children (other than raising my own child who does not have any exceptional needs). Your posts provide me a glimpse at a parent-of-a-person-with-disability perspective I am constantly seeking to understand and do not have a great deal of access to in my work. Thank again!
Actually, that’s one of the issues I have with the term “special needs parent.”
I’m so not focused on adults with I/DD because it seems so far off in the future. But I’m starting to try and think about that more and more. What do you do in your work?
I develop and manage 24 hour and semi-independent living programs for a medium size provider agency in a fairly rural community. I am also a Person Centered trainer (there are only about 7 to 10 of us in Oregon, at the moment).
One of the most wonderful things about my kid is getting to know about people with I/DD and people work with them and help them advocate for themselves. On behalf of people who love people with I/DD, thanks!
It is my pleasure. Some days I can’t believe they pay me to do this. I meet some of the most amazing people and learn lessons about humanity I don’t believe any other job could teach me. I happened upon this line of work by accident and now I can’t imagine going to work with a goal that is *not* “I’m going to help this person do what makes them happy and we are going to have fun doing it.”
On behalf of people who support people with I/DD, thanks for bringing someone wonderful into this world! Although I have never met your son, he sounds awesome 🙂
That’s so wonderful you feel that way.
And, i think I’m totally objective when I say this, that my son is completely totally amazingly awesome. My husband and I regularly say to each other how much we lucked out with our kids.
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