When Callie had her amputation, I scoured the internet for all things amputations, prosthetics, and limb differences.  I read countless articles, books, scientific papers, and blogs.  I learned all I could learn about the life she would lead after her amputation surgery and how we as her parents, could best support her.

People recognized that she looked different—but I could never be prepared for how they acted with that knowledge.

It rips your heart out when someone asks you, “what’s wrong with your child”?

In my mind, I know nothing is wrong with Callie, but I understand that for children who are recognizing the differences in the world around them, this is a natural inquisition. I am usually not offended when children ask me questions about my daughter. They are making sense of the differences between people—I have learned that if we gracefully use these opportunities of being around disabled children in a positive way, we can teach all children to be more compassionate and accepting people.

Below are some ways I’d suggest talking to your kids about children with disabilities, including what I wish all parents would teach their children about my daughter, Callie, and her disability:

I think this is an obvious one, but it always rings true now and forever. It isn’t polite to stare at anyone, regardless of what their facial features may be, what assistive equipment they may use, what the sounds they are making sound like, or even what the color of their skin is. No one likes to feel as if they are on display or in the spotlight in a negative way.  Over the years, this one has chipped away at me and I tend to get annoyed rather quickly with people starting.  Especially grown adults.  Callie on the other hand, has gracefully found a way to encourage conversation with perfect strangers when she catches them staring at her.

Making eye contact is, however, encouraged. If you are speaking with someone, looking them in the eye—and not at what makes them look different—helps that person feel seen and feel that they are of value. A smile is also welcomed and encouraged!  Doing this also helps to break the barrier of hushed whispers and shame that typically surround those with disabilities or medical differences.

Don’t be afraid to ask questions

Many times, sweet, little children would ask me about why Callie doesn’t have “two shoes” or why her leg was missing. Their questions are always innocent because they genuinely wanted to know about her. I would explain that Callie was born with a limb difference and her prosthetic leg helped her walk.

Teach your children that it’s OK to ask questions—it will help them understand and start a conversation. Starting conversations is how we can get to know one another, and children need to know that it’s always OK to be curious in a well-intended way. If you jump in with a “Oh my gosh, I’m so sorry, I don’t know why she asked that!”  or even worse, you hush your child and hurry them away; you’ll perpetuate the idea of the “other”—that people with disabilities are separate from you or me—and that’s just not true. A genuine desire to understand another human being is never a bad thing.

*This being said, be mindful and defer to the person with the disability.  When Callie is tired or her leg is hurting, the last thing she wants to do is engage with someone.  It’s always helpful to ask if it’s ok to “talk” to make sure the person has the emotional capacity to have a conversation.

Please do not make your own modifications of the diagnosis. Generally, people don’t like to be defined by their diagnosis or disability. Don’t say “that Downs kid” or “the blind kid” or “the amputee kid.” Instead, say “the child that has Down syndrome,” or “the child who is blind,” or “the child with a limb difference”—that is, if you have to refer to that part of development at all.  Or even better, maybe just call them by their name?

Using people-first language puts most of the emphasis that they are in fact a child, just like everyone else. Yes, there are some things that make them unique, but more than anything, they all want to be “just a kid.” If you don’t know what the proper terminology is, please ask. Most people will not be offended and will be pleased that you are curious and want to learn.

Don’t be afraid to touch them

What my child has is not contagious and by staying away or being afraid to touch her, it only makes her feel more isolated and different. Children should understand that they will not “catch” whatever their new friend has.

Callie doesn’t have cooties.  She has a limb difference.

That being said, it’s always good practice to ask permission before you touch anyone. Some children are sensitive to touch and may be bothered by it. Everyone should be taught about boundaries and respecting each others’ bodies. So, teaching children to ask before they do something to be sure that the other person agrees is always a good idea. If a parent is present, they can ask a parent to make sure that their gesture won’t interfere with a child’s medical equipment or agitate them unintentionally.

They are kids just like you

If your child likes LEGOs, chances are mine does too. If they love Frozen and can’t stop singing the songs at the top of their lungs, chances are mine is singing (or trying to sing) the same song–she got her Mama’s singing voice sadly. If your kid likes manga, or football, or art, or Marvel or dancing, chances are mine does too.  All kids are usually aware of the same toys and movies and games that your children play with. So, if your child thinks that they won’t have anything in common with my child, they are probably wrong.

Help them find things they have in common. Remember that even with a diagnosis, children with disabilities are still children and they want to be treated like everyone else. This is perhaps the most important thing you can teach your child.

Everyone wants a friend. Everyone wants to feel accepted. Everyone wants to feel like they fit in. Everyone appreciates kindness and a smile.

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