It’s SMA awareness month! Time to spread some awareness. Some years I’m more motivated than others, and after several years of blogging about SMA and special needs parenting, I sometimes feel like I have nothing new to say.
But, while driving in the car craving Sour Patch Kids, I tried to mentally think of any new questions I’d been asked and the one that jumped out was from a friend whose child was going to be meeting my boys for the first time. Her young son didn’t know anyone else in a wheelchair and she wanted to know how to prepare him to meet Fulton and Teddy. She didn’t want him to say anything rude or stare.
She wondered if she should check books out of the library, do some play acting, or run through a litany of potential situations and what to say and do. While I was very impressed with all her ideas, I quickly insisted that building up the meeting was the last thing she should do. Here’s a bit of what I did share, along with some other tips.
1. Make disabled kids and adults a regular part of your child’s world NOW. More and more shows for children and adults include characters with disabilities. You don’t need to point out every instance of a person in a wheelchair, but just make sure these shows are part of your child’s regular viewing. Also, pick up a few books about disabilities on your next library run. (Some ideas.) You don’t need to make a big deal about it, just read the story and follow your child’s lead. If they ask questions, answer them and if you don’t know how, look it up! Don’t be afraid to say the name of a diagnosis. All my kids want is to be viewed as normal. You make that possible but exposing your child to disabled adults and kids as much as possible. A couple of books I recommend would be:
Zac’s Play Day
This book was created by the company who produces Spinraza, the drug both Fulton and Teddy are receiving. (click the image to download)
Not So Different: What You Really Want to Ask About Having a Disability
Written by the awesome Shane Burcaw of Laughing at My Nightmare fame. (He’s also got a new YouTube channel for the adult crowd.)
2. If you’re not sure how they’ll respond when meeting a disabled person for the first time mention the upcoming get together and show a picture of who you’re visiting. Then answer your child’s questions as they arise. “Why does that child in the picture use a wheelchair?” Don’t make a big deal of it, just answer his questions. You can also share other facts about whoever it is you’re visiting. “Teddy uses a wheelchair, but look at his t-shirt; he likes Marvel just like you. And see the Minecraft logo on his hat; you love that game too. I bet he would love to talk to you about that.”
3. Watch your wording. Avoid saying something is wrong or not normal. Disabled children are not typical but their life is completely normal to them. And their disability isn’t ‘wrong’ or an indication that they’re ‘sick’, it’s just who they are. Disabled children and adults also aren’t inspirational or heroes just for existing and doing normal things. Your child doesn’t need to celebrate or praise everything my child does.
4. Model good behavior. Your child will follow your example. If you tell your child to be friendly and treat my child like any other child, but then come over and pat Fulton on the head and talk down to him, your child will assume the same attitude.
5. Make sure your child knows he doesn’t have to become my son’s best friend or helper. You child also doesn’t have to do everything my son wants just because my son is disabled. If Fulton is being bossy and mean, it’s okay to not play with him. And if Fulton needs help but is rude about asking, you child can wait for Fulton to use his freaking manners like I tell him to!!!! Seriously though, my kids don’t need babied.
6. Wheelchairs and medical equipment make a disabled child or adult more independent. Your child doesn’t need to focus on the chair, but let them know it’s something to be happy about, not a reason to pity someone. And they can’t touch it! Never ever!!! It’s not a toy, like, the best Powerwheels ever, or something. It’s an extension of the person using it. If your child doesn’t like strangers touching him, he shouldn’t touch the medical device of someone else. Even service animals are off-limits, no matter how cute and cuddly.
7. If you want to spread awareness to a group of kids (scouts, club, classroom) use reliable resources created by disabled adults. Having a group of teens take turns in a wheelchair doesn’t mean they now know what it’s like to spend life in a wheelchair. They just might have a better idea of how the building they’re in is not accessible. Start here for some ideas: A Day In Our Shoes
Is there anything else you’d like me to write about this month relating to SMA or special needs parenting? Ask away in the comments please! Then link up your post below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
Thanks for including me, added your post to my social media scheduler.
I love this post so much! Thank you!
Thank you for sharing (and can I say that #3 reminds me of the Speechless episode where Ray gives a speech about how his disabled brother is NOT inspirational, and is actually kind of a jerk sometimes? Love that show!)
Thank you for sharing, especially the library books. I grew up knowing my mom’s dear friends, a married couple, who both used wheel chairs from a stroke ands childhood polio. I still evaluate doorways and restrooms for them, even though they’re both gone. But my children do not have that and it’s hard to know how to gracefully address their questions about strangers. Early exposure seems the best.
What a great post! Thanks Kelly. My kids are those kids that always very loudly ask questions and I will admit at times I freeze. I love those books and will check them out as well as mentioning not to touch the wheel chair. That makes so much sense yet I would never really have thought of that.
“Disabled children and adults also aren’t inspirational or heroes just for existing and doing normal things.” That line stuck out for me the most. I’ve always been a bit uncomfortable at that particular intimation, but I couldn’t figure out why. No doubt, there are people with disabilities who *are* inspirational, but it doesn’t have to be automatic. I also agree wholeheartedly about people with disabilities being part of normal life and modeling good behavior. If *we* act as though there’s not much difference, so will our kids.
thank you for this, Kelly. it’s really helpful!!! and thanks for hosting, as always.
I didn’t see where to subscribe to posts by email?
What a brilliant idea! Really smart & great. Appreciate your thoughts. Thanks a lot for sharing this wonderful teaching method to the kids with us. And as a mom, I think this post is very valuable to me.
I feel that parents need to take out their children out more so that they can meet special children with disabilities so that later when they interact with them, they will be understanding and not just sympathetic.
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