Today I’m guest-blogging over at Our Typical Life. Beth and I have struck up an unlikely friendship this year (unlikely because she’s a good bit younger than me and lives in Minnesota – BRRRR!!!) based on our love of photography and children with Down syndrome (not in that order). Following is a taste of what I’m saying over there:
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.
To read the rest of my guest blog post, click here.
My daughter has CP and I don't necessarily mind if somebody asks what is wrong with her. It is clear from watching her that she's not "normal", and I'd rather people acknowledge than pretend it's totally normal for a 2 year old to not be able to sit unassisted.
I do mind people who ask questions about what she may some day be able to do, and ignoring what she can do now. I had somebody out of the blue ask "will she ever be able to walk?" Well, I don't know, but at this very moment that you're asking, do you see how awesome she's doing on her stomach?
Another fantastic post. I am sharing it now. Have a great weekend Andi.
Amy – Interesting that you've had people ask about what your daughter might be able to do in the future – I haven't encountered that before, I don't think. I have had friends ask me "What do the doctors/therapists think about X?" but those are more specific questions that I wouldn't consider odd.
Andi- I so love reading your blog! I have to say I agree with the comment about being strong. A friend of mine with a son with downs syndrome calls it "Mom'ing- UP" Like athletes step up, she said as a mom she has to mom-up!
People always ask why Logan is little and I tell them he was a preemie, in the NICU for about 3 weeks and he has a murmur that we are still dealing with that might result in surgery. I have had a few people tell me too about being strong and my response was similar to your's about what should I do, crawl into bed? I usually say you never know how strong You Are Until Being Strong Is Your Only Option"
Andi, I'm so glad I read your blog today. I've been slack in keeping up but I had a few minutes! My youngest daughter has autism and she has no social filter… she will say anything. She will say, loudly (as she has no social volume control, either), "Why is that person in a wheelchair?" or "Why does he look like that?" She doesn't mean to be rude or insensitive, she just doesn't process the way other people do. I am guilty of shushing her and talking to her about not saying "those things". Reece doesn't have a judgmental bone in her body… she just wants to know stuff. But my embarrassment takes over. 🙁
There's such a fine line in our society between what is appropriate and what is not, and I'm not sure that any of us really know where that line is exactly. We're taught not to pry into people's lives, and we're also taught not to burden others with our personal issues, so at the end of the day we all have little walls built around us that keep us from sharing. While I certainly agree that "Good Fences Make Good Neighbors" (both literally and figuratively!), I sure do wish our figurative walls were 4-foot pickets instead of 12-foot razor wire! 🙂 Hopefully you guys get what I am trying to say with my crazy analogy…