“Look, Mom, that baby is missing her hand!”
My daughter was born in July of 2018 with a physical “difference”; she was born with just one hand. When someone is born with a physical difference it is called “congenital.” People usually aren’t sure what congenital means or how to talk about physical differences and neither did I, before finding out about my daughter.
We are continually learning new ways to talk about her difference. If we, as her parents, didn’t know words that are used to describe a difference, it’s probably true that our friends and neighbors did not know AND have probably not taught their kids how to speak to someone who looks physically different than themselves.
I’ve learned some valuable lessons about what our kids could say to someone like my daughter who looks different than they do. Resources like the Lucky Fin Project (which connects families with limb differences), friends parenting kids with differences, and the genuine kids we’ve met around Kansas City have been extremely helpful. Here are a few things I’ve learned that apply to any physical difference. This difference could be a hearing aid, wheelchair, prosthetic, physical malformation, or a noticeable birthmark.
Lesson 1: Curiosity is Good & Healthy
As parents, we usually alleviate our discomfort and nervousness about not knowing what to say to our child in a new situation by saying, “Shhhhhh” or “That’s not polite.”
A few months back at KCI airport, a little boy pointing at my daughter said, “Look, Mom, that baby is missing her hand!” His mom shot me a horrified, side-eyed glance and covered the boy’s face with her hand while whispering something I couldn’t hear. Her hand was literally covering most of his face (been there).
Squelching curiosity leads to fear and separation. Our failure to teach children to ask questions about something or someone that is different leads them to be afraid of the unknown. Then they become adults who stare or say unkind (even ignorant) things.
Lesson 2: Kids Need Help with the Language of Difference
At my son’s allergy appointment, a little boy saw my daughter’s “little arm” hiding beneath her sleeve, but couldn’t seem to put words to this anomaly. The whole time we were reading books and playing he kept glancing expectantly at her sleeve looking for the hand to poke out at any minute. As a 7-year-old, he did not have the words to put to his curiosity. I offered him some help.
“Do you notice something different?” He nodded.
“She only has one hand.”
Immediately he put some physical space between himself and my daughter. He slid his bottom back as far as he could to gain some space. I understood. We are often scared of what we don’t know, or what is different than ourselves. After we talked for a little while, he moved closer again.
He needed help putting words to questions. His inquiries gave him a chance to learn something new! In this case I provided words, like “little arm, one-hand, lucky fin, and prosthetic.” It is our job as parents to be brave and present when these opportunities arise.
Lesson 3: Parents’ Postures & Tones Have Power
The tone we set about difference matters. I am learning this third lesson from my own children. Kids are capable of being empathetic and kind, but it may not be their first response.
I caught my son staring, craning his neck, to look at a man in a wheelchair at church. I was embarrassed. We see this man every week, but my son had never been so close to him.
I wanted to model kind curiosity, so I did the uncomfortable thing and walked closer to this gentleman and his wife. I said, “hello” and commented on the weather and then bent down to my son. “Would you like to say, hello?” He emphatically shook his head no, but he stopped gawking. I smiled and continued walking.
Did I say exactly the right thing? I’m not sure, but there was power in redirecting my son at that moment, showing him that we move towards those who are different and modeling kindness in the way we speak to people with different bodies than ourselves. As a parent, it is my job to train my children to be respectful and kind to those who are differently-abled (another term you can teach your kids instead of disabled).
Don’t Stop Here
Let these be your first steps towards educating yourself and your family on how to be more curious, engaging and respectful of your friends, neighbors or even strangers who are physically different.
In Short: Educate, Educate Educate
- Educate yourself about different ways to talk about difference. For example, teaching your kids to not touch someone’s wheelchair, hearing aid or prosthetic without their permission, as it is an extension of their body.
- Educate your kids early (starting at 2 or 3 years old) before they meet people with differences. Watch a YouTube video of a dancer with a prosthetic and ask what they notice. Discuss how people are people even if we are different. Buy a book that talks about kids with differences.
- Educate your kids in the moment by modeling curiosity and kindness when you meet people with physical differences. Go to an accessible playground to meet new unique friends.
I’d love to hear your hard lessons learned, or resources you’ve found helpful when educating kids about physical differences.
I love this! So helpful. As a mom whose child died suddenly from an undiagnosed illness we have learned that people have no idea what to say in tough situations. As parents, the best thing we can do is prepare our kids in advance just like we do with other experiences. Thank you for the direction.
Thank you so much Denise. I’m so sorry about the loss of your child. I can imagine the grief that came with people not knowing how to talk about it with you or their kids. It makes sense that we shy away and protect ourselves from what gives us discomfort, but that’s not always the best way to love someone else when they are struggling.
Thank you for your beautiful article. My daughter was born without her right hand and has a short forearm. She is now 19 and plays on the Paralympic volleyball team. If you asked me when she was little is there where we would be I would say no. She realizes now that she is a role model for others. I used to hate when people would stare. I am a pediatric occupational therapist and very observant. I tried hard to educate others. It helps when they asked questions rather than stare and walk away. It comes from the parents. We always taught her there is nothing you can’t do. Preschool teachers called her the “can do” girl. They are amazing kids and we should all look forward to what they can teach us about the world. Look forward to hearing more about your beautiful daughter.
Dana. Thank you so much for sharing about your daughter. I am so encouraged by the incredible grit kids have in overcoming obstacles and surpassing our expectations. Your daughter sounds like an amazing role model. I’m so grateful my daughter has her to look up to.
Hannah, thank you so much for writing this and sharing your experiences! I have a 6 year old daughter, Drew, who was born without her left hand. As an educator, I went into teacher mode and made it my mission to educate young children on the importance of acceptance and how to deal with differences. Drew started kindergarten this year and we wrote a children’s book to help introduce her and her difference to the other students. It was amazing to see their little minds open up and hear the dialogue the book encouraged. Your daughter is very lucky to have a mother and advocate like you!
https://kicamprojects.com/shop/drew-is-just-like-you/
Wow Brandi. Thanks for sharing your experience with Drew. Thank you so much for sharing the link to your book! Can’t wait to read it.
Loved this read! Thank you for articulating what so many of us experience. I happen to live not far from the KC area and have 2 lucky fin kids. Is there any sort of Lucky fin group in the area to get the kids together? My daughter especially gets such encouragement from meeting other limb different kids.
Thanks again!
Hi Dana! I don’t know of an official ‘get together’, but I’ve definitely connected with other KC area lucky fin parents. When this pandemic is over lets connect on Facebook to make it happen. I know all of our lucky fin kids and their siblings would greatly benefit!
great article. Parents forget that asking questions is totally ok!! and that they set the tone! My son has half a nose (midline congenital malformation) and I am always struck my the fact that people think because he looks different that he also has learning differences. He doesn’t!!! He is super smart. Just because someone looks different doesn’t mean they are intellectually different. And likewise, just because someone looks traditional, they can have intellectual differences!
Thank you Katie! I totally agree that we forget that its ok, or we never learned it as children so we continue to miss this important part of understanding others. I grew up with a brother who has Downs Syndrome and I didn’t really know it was ok to tell me to ask me questions. I knew I wanted to talk about it, but I couldn’t put words to the fact that he was different. It took me, becoming a Mom and hearing from other Moms and Dads that questions are good. They break down barriers and as you said, regarding your son, clear up confusion or fear! Thank you so much for sharing your experience.