As the mom of a child with a disability, there are four things I wish everyone knew…
It was during our routine 18-week ultrasound that we found out our second daughter would be disabled.
At the time, hearing the doctor tell us that all of her limbs were “deformed, misshapen and in some cases missing bones altogether” was a gut punch that knocked the wind out of us. I literally couldn’t breathe as I sobbed with my face buried in my hands.
It’s strange to look back at that ultrasound appointment now and realize how differently I view the entire situation. Yes, my daughter’s limbs are quite different — thus the common term used to describe her disability as having “limb differences.” Her left arm stops above the elbow — a short round nub. Her right arm is a little longer, but still short with no elbow and a small, atypical hand. Her legs are also both shorter, and different lengths at that, but she does have two feet, which she uses for most fine motor skills like writing and assembling lego spaceships. Yes, the doctor was correct about her limbs, but other than that, he didn’t tell us a damn thing!
Ultrasound machines are not “future predicting machines.” If that ultrasound had been really accurate our appointment might have gone something like this:
Doctor: “Looks like your daughter has a wicked sense of humor, an incredibly compassionate heart and if I’m seeing things correctly it looks like she’ll be born with extra awesome, as well. Congrats. It looks like you’ve got a helluva kid joining your family.”
Us: “Well, what about the limb differences, Doc? Should we be worried?”
Doctor, chuckles: “Compared to everything else she’s got going on, small potatoes, guys. Like I said, you guys are lucky. I just had to deliver an ‘asshole’ diagnosis the other day and it was devastating.”
Luckily, it didn’t take long for us to realize that there was nothing tragic about our daughter or her disability. She was a sweet baby and grew into one of the kindest and most polite toddlers I’ve ever known — in fact one of her first words was “thank you.” She is still extremely tenderhearted to this day, but also has a wicked sense of humor because, you know, balance. As we’ve spent the past eight years being her parents, we’ve also become her advocates. It wasn’t too long ago that we used to see disability as inherently negative, sad and undesirable. And because we viewed disability through a negative filter we were also used to couching our interactions around disability with pity. It wasn’t until my daughter was born that I really understood what pity was and how harmful it could be.
The line between pity and empathy is razor thin. My general rule to differentiate between the two is that empathy stems from listening to another person’s perspective and reacting accordingly. Pity, however, assumes. Assuming that a person with a disability automatically has a harder, sadder life because of their disability. Yes, people with disabilities get down on their lives and their bodies, just like we all do (hair, skin, acne, weight) but there is a big difference between listening to a person’s frustrations and then empathizing, “I’m so sorry to hear you’re having a bad hair day — that sucks!” vs. ASSUMING you know someone’s feelings and then commenting or teaching other people how to make those assumptions — “Wow, your hair looks awful today, you must really feel self conscious. You are so brave for going out in public like that.”
Nowadays I see disability with so much color, variance and possibility. Disability is just another way to exist in this world, and it is not inherently wrong, sad or undesirable. It just IS.
Over the past eight years, we’ve navigated a lot of interactions between our daughter and other children she meets for the first time. Having a very visible disability — and an awesome pink wheelchair, beep, beep! — means that she never flies under the radar. I’ve seen many children stare and point at her in disbelief, some grabbing at her arms and some vocalizing their concerns. “MOM! What happened to that girl’s arm?” And likewise, I’ve seen many parents and caretakers at a loss for how to navigate what they view as an embarrassing situation. It may seem like the best idea is to leave. Immediately. And many of them do, while shushing their children because it seems like the polite thing to do. I’m sure I would have once done the same thing. But now I know better, and when you know better you do better. Therefore, I’d like to suggest an alternative: Stay.
I’ve developed a formula for navigating these conversations with young children, and I’d like to share the four steps with you, below:
1) Don’t walk away + questions are okay
The emotions that a child feels when seeing another child with special needs can range from curious, to nervous, to just plain confused. Let your child know that questions are okay. For example, if your child points at my daughter and says, “What happened to her arm?!” my suggestion would be to get down on your child’s level and explain that some people are born differently than other people. I then often refer to other differences, like hair color, skin color, glasses, etc. It may help to reference friends or relatives who have a wheelchair, walker, etc. Invite your child to introduce him or herself to the other child. If the caregiver is nearby, you may want to reach out to them and say, “My child has some questions about your son/daughter, can you tell us a little about him/her?” Most parents I know are happy to share what makes their kiddo unique.
Leaving the situation can unintentionally reinforce an “other” mentality, suggesting to our kids that a person with a disability is not someone we interact or play with. Staying and having a conversation can instead build bridges of friendship. Because we don’t view disability as negative, because we are not ashamed of our daughter’s differences, we can talk about them openly.
2) Reinforce kindness
While it’s important not to shame kids for their curiosity, it’s also very important to let children know in no uncertain terms that certain things are NOT okay. It’s not okay to point, stare, laugh, call names or use rude words. Even if your child does this innocently — “She looks weird!” — please correct them. For example, “That’s not a nice word, and that might hurt her feelings” or “She’s has different arms than yours, but she’s not weird.”
3) Find common ground
Once your child has some understanding that some people are different, now is a great time to find some common ground: “I bet she likes a lot of the same toys/games/food that you like.” You can then ask the child or the child’s caregiver what they like to do. Establishing sameness is KEY. This is when the light goes on and children realize, “Oh, she’s just another kid, like me. We are more alike than different!”
4) Emphasize strengths
I try to emphasize that my daughter has strengths and abilities, too. Yes, there are some things she can’t do, like walk, but, “Wow, she can drive a wheelchair!” Or “Guess what? She can write with her feet!” It’s super important for kids to understand that everyone has something they’re good at.
You may not navigate this interaction perfectly, you might fumble for words or be at a loss, but most people will appreciate your effort and help you in the process. I’ve gone into many, many classrooms to teach children about disability — about my daughter — and I have seen their curiosity and hesitancy turn to acceptance and inclusion in a matter of minutes simply because we took the time to talk about it. In my experience, education doesn’t just make a difference, it makes ALL the difference when it comes to teaching our children about disability and fostering a community of inclusion.
Amy Webb writes the blog This Little Miggy Stayed Home about her family of five in Ohio. Her wonderful new children’s book, When Charley Met Emma, about a little boy who meets a girl with limb differences, came out this month.
(Bottom family photo by Momoko Fritz.)