Why You Shouldn’t Pity Special Needs Parents
The other day, I read a piece on The Huffington Post about stuff people needed to know about special needs parents. The writer, Maria, mom to an adorable three-year-old boy with a chromosomal disorder, was candid and honest in the way that blogs tend to be. As a parent of a child with special needs, I related when she talked about how tired she got at times and how offensive she found words such as “retarded” and “short bus.”
I felt sorry for her by the time I finished reading what she’d written. I am sure many people felt similarly bad. It’s something parents of kids with special needs constantly contend with: extreme pity. I’ve seen that look—the cocked head, the “awwww” when I say that my son has cerebral palsy. “Wow, that’s tough,” people have said. “It can’t be easy for you.”
And it’s true: My life isn’t always easy. Sometimes, it’s pretty hard. That’s why it’s comforting to trade notes with parents who have kids with special needs. But what I don’t want is pity from parents of so-called typical kids. Pity means that I stand in an inferior position in life than they do. Pity means that I’m dealing with a tragedy. Neither thing is true.
And so, let me explain why you shouldn’t necessarily feel sorry for me and other parents of kids with special needs. Although if you’d like to take us out for mani-pedis and/or give us large chunks of money, that would be fine.
Don’t feel sorry for me because my life is tough. So, yes, I am like a human Google calendar, juggling a whole lot of therapies and doctors appointments for my son. But I am lucky that I’m able to get my son, Max, most of the services he needs. I push for what I can get from his school and our insurance company; I take on extra work to cover the rest. While parents of kids with special needs have financial hardships other parents don’t have, a lot of us discover resourcefulness, smarts and drive we never knew we had. We push and advocate and push some more for our kids. We become superheroes, able to leap tall buildings and fight the insurance company claims department in a single bound. While you are all still welcome to give us large chunks of money, one of the best things you can do if you have a friend with a child who has special needs is share resources. One of my good friends is always emailing me about activities for kids with special needs.
Don’t feel sorry for me because I’m not living the motherhood dream. Yes, things turned out differently than I expected. Max had a stroke at birth; until then, I thought only the elderly or the people who regularly consumed double-bacon-cheeserburgers had strokes. But you know what? My son brings me as much joy as any child brings a mother. Max has a younger sister, Sabrina. Both my kids make me laugh, both give me pride, both make me thankful every single day that they are in my life. So maybe I’m not living the Hollywood mom dream but a tear-jerker, this ain’t.
Don’t feel sorry for me because my child isn’t a “typical” child. Max may have disabilities but in many ways he is like other kids. I get the full range of kid-ness—the cute way he moves when he dances, the thrill of progress notes his teachers send home, the tear-my-hair-out moments of sibling rivalry. The whole shebang. I love this child. I wouldn’t want any other.
Don’t feel sorry for me because you think my marriage is suffering. Of course my husband and I quarrel. That’s because a) we’re human and b) we’re married. Sometimes, we argue about stuff my friends don’t necessarily quarrel about, like whose turn it is to program the speech app that my son uses. But basically, we’re happy. That stat you may have heard about how the majority of marriages break up when there’s a child with special needs? Not. True.
OK, you may feel sorry for me because I have eleventy billion forms to fill out.
This is not to say that I never feel bad for myself. At times, I do, like when I have some fun family event or a restaurant outing planned and Max’s sensory issues get the best of him and he has a screechfest. Ah, I’ll think, why does it have to be this hard? Back when Max was a baby, I used to throw myself daily, even hourly, pity parties.
What I’d really like, though, is for you not to feel sorry for me. That way, you can see me as a parent equal, and treat me the same way you do other parents. You can’t quite do that if you think I’m living an entirely different parenting existence than you are, or you feel that my life is sad. You can do that if you consider me just another parent, trying to juggle it all and stay sane.