Set Apart: A Primer for The Typical Folks
Unless you had the benefit of growing up with a disabled friend or family member, I bet you can relate to this scenario: you spot someone in a wheelchair, using a walker, missing a limb, or (fill in the blank). You want to be nice, so you try to make sure that you don’t give the impression that you’re staring (which often means you look away), and then you are, of course, mortified when your child points and says “What’s wrong with her?!?” You turn red from embarrassment, panicking because you don’t know what to do now, then shush your kid and give them an impromptu lesson in politeness that they almost certainly don’t understand because they didn’t think they were being rude – they were just curious. Can you relate?
Both of my children are “differently-abled.” My daughter, Sarah Kate, has cerebral palsy. Although she’s made great progress over the years, she still has a distinctive gait that isn’t “normal”. My son, Nathan, has Down syndrome. Although he has yet to miss any developmental milestones, his distinctive facial features announce to the world that he is also different. We’ve encountered a broad range of reactions from people over the years, but the scenario I described above is pretty common.
So if you’re in that situation, what should you do?
I can’t speak for all parents with special kids, but I always like it when people ask questions. It gives me a chance to advocate for my child, and educate kids on disabilities. So if you’re ever around my differently-abled kids (or others), I want you to remember something: You don’t need to feel awkward. Feel free to ask questions about my children’s conditions and the progress they’re making. If you know us, invite us to do things – we’ll let you know if we can’t. Don’t worry that you have to figure out all the details for us – we know the drill.
And while we’re on the subject, don’t look away when you see someone who is “differently-abled.” Instead, look us right in the eye and flash us a big smile. Many people don’t take the time to look at our children and see the person instead of the diagnosis. And that goes for us moms, too – people try not to look at us, either, which means that we often feel invisible, and are often lonely to boot.
Don't look away. Smile. Ask questions.
But that's the easy stuff. Now I want to dig a little deeper.
From my experience, and from talking with other parents of children with special needs, there are a few other things that a lot of people do and say that we aren’t so fond of. Actually, some of these we hate. Really hate. I’ve prepared a list for you of the Top 5 things I’d rather not hear.
1. “God only gives special children to special people. You must be really special.”
Everybody loves a compliment, but the truth is that I’m not special and I’m not amazing. I’m just a mom. If there is anything at all about me that is special, it's because I was given special kids, not the other way around.
2. “You are so much stronger than me. I don’t know how you do it. I couldn’t handle it.”
Again, I realize it's spoken with the best of intentions, but let me let you in on a little secret: when it comes to your babies, whatever it is, you handle it. The only other option is to crawl into the fetal position and pretend it’s not happening. But you can’t live that way, so you will have to eventually get up off the floor and face it, because your babies are counting on you.
3. “I’m so sorry”, or worse, The Pity Stare
Let me let you in on another secret: A lot of us special mommas actually feel sorry for parents of typical kids because they miss out on being a part of our community. When your kids achieve things, it’s not really a big deal (after that first kid, anyway). Everything's a big deal in our house!
Yes, there are times that our life is tough. Yes, there are times we wish we were like you. But just because we have this Thing – this highly visible challenge – doesn’t mean that our lives are sad or tragic, and or that our children’s lives are sad or tragic.
The thing is, no one is perfect - we all have flaws. Throughout life, we each choose how much we will reveal our flaws to those around us. People with disabilities have awesome strengths. The main difference is that they can't hide their weaknesses like the rest of us.
4. Critical statements about our parenting choices (includes dirty looks)
Sadly, there are a lot of less-than-stellar parents in the world. But before you make a really loud comment while standing in the line for the Pirates of the Caribbean ride about how strollers aren’t allowed, stop to think that maybe that stroller is being used as a wheelchair for a little girl who doesn’t have the stamina to stand in line for 45 minutes to see Jack Sparrow.
Occasionally, we do benefit from our specialness. But much more often, we are like salmon swimming upstream. Please don’t begrudge us the opportunity to do things that typical families do, and cut us some slack if every once in a blue moon we actually have it a touch easier than you do.
5. "That’s so retarded!” or “What a retard!”
I'm sure that many people who use the r-word probably don't ever consider how what they are saying affects people with intellectual disabilities, their families, and friends - I get that. When questioned, people will often say "...but I didn't mean..." and I’m sure that’s true. The bottom line, though, is that the r-word is never used to describe something or someone in a positive way. Retarded is never a compliment.
If you use the r-word, please stop. If a friend or family member uses the r-word, help them to understand why it's hurtful.
Differently-abled children (and their parents) have dreams, just like you do. We also need friends and love, just like you do. We are more like you than we are different.
Don’t let the tiny things that distinguish us, separate us.
