Parents of kids with special needs may seem like a whole other species of parent to other people — this I know from comments and reactions I’ve gotten over the years. A lot of people don’t get that even though I have a child with cerebral palsy, in most ways I am just like other parents (and in most ways, Max is very much like other kids).
Here are just nine of the things that I wish other people knew about special needs parents like me:
1. Our family life doesn’t suck.
Our children are not tragedies. They are our children, as loved, adored and hugged as much as any other child. They make us laugh. They bring us joy. They fulfill us. So please spare us the pity about our kids — but feel free to nod sympathetically if we gripe about all the medical appointments, therapies and extra paperwork we juggle, not to mention the costs. Or just bring us chocolate.
2. Sure, sometimes we’re sad — but not for the reasons you might assume.
I spent the first year of my son’s life grieving about what had happened to him, freaking out about what the future held for him and mourning the loss of the parenthood experience I thought I would have. But as Max matured, and I did, too, the sadness abated. These days, the main thing that makes me sad is when I see other kids ignoring him or leaving him out.
3. We think our children rock.
Other people may look at our children and see kids who cannot walk or talk, kids who are cognitively impaired, kids who have quirky mannerisms or who don’t interact in the typical way children do. But we look at our children and see kids who have made progress, sometimes defying the medical odds and the doom-saying doctors. We see children who are trying the best and who have all sorts of abilities — and we desperately wish other people would see that, too.
4. Our marriages aren’t falling apart.
There’s a perception that parents of kids with special needs have a significantly higher divorce rate than the average population. This is not factually true; one study from the Kennedy Krieger Institute found that while parents of kids with autism may face more stress, it doesn’t result in breakups any more than it does in families of so-called “typical” kids. Other research from Vanderbilt University found that divorce rates among parents of kids with Down syndrome were actually lower than in other families. In my own special needs circle, I can think of only one couple who have broken up. My husband and I have definitely been through the “for worse” part of our marriage vows, but we are stronger for it.
5. We are very sexy.
6. We’d rather you ask than stare.
My son has been gawked at a fair number of times over the years. I vastly prefer that people come up to me and ask questions about him rather than gaping at him. Or, really, just say hello! Staring is rude, like your momma told you. It can make me and my child feel uncomfortable and out of place. And the last thing my child needs is to feel alienated; he has enough challenges to overcome.
7. We are not politically-correct word police.
Many parents of kids with special needs have spoken out about the words “retard” and “retarded,” ones that perpetuate negative stereotypes of people with intellectual disability. Even when people jokingly say them (“I’m such a retard for leaving my phone at the restaurant!”), they perpetuate the idea that people with cognitive impairment are stupid. This isn’t about a ban; it’s about raising the respect bar, and getting people to consider how they think and talk about people with disability.
8. We like to talk about our children.
I’ve heard other parents say that they sometimes don’t know what to talk about with parents of kids with special needs. That’s easy: If you sit next to me on a bench at the playground or strike up a conversation at a birthday party, ask me the same stuff you ask other parents: Where my child attends school, why he’s wearing a firefighter hat, what I think about our town’s park renovation, how he managed to get such a sexy mother (see: “We are very sexy”).
9. We even like to joke about our children.
We are not hothouse flowers! Feel free to joke with us about how maddening it is when kids wear their lunches all over their outfits. Or when they let out a sound-barrier-breaking screech when they get ticked off. Or whatever. Just like other parents, we like to laugh and commiserate about parenthood. Unlike other parents, we sometimes feel lonely. It feels good to bond over the insanity that is parenthood, no matter what kind of a kid you have.