When My Daughter with Special Needs Asked about Another Child’s Disability

I noticed my four-year-old daughter draw nearer to my leg as she curiously kept her eyes on the 12-year-old girl just a few feet in front of her.

I chatted with the girl and her mom, and eventually, my daughter Brenna looked up at me as she took her gaze away from the girl sitting in her wheelchair with metal braces around her legs.

“Mommy, what’s on her legs?” she asked me.

It was the first time either of my children – Brenna and her 7-year-old brother Connor – had asked me a question about another person directly in front of that particular person. But it wasn’t the first time I’d heard a question about a child’s physical appearance… usually, however, those inquiries are about my daughter, and not from her.

Brenna was born with a rare genetic skin disorder called Harlequin ichthyosis, which means her skin doesn’t work well and builds up too quickly. The rare condition leaves her susceptible to infections, unable to sweat, and with an appearance that looks like a severe sunburn all over her body. She wears noticeable lotion, she is small in stature, and she has sparse hair on her head and body.

Because of this, Brenna is the recipient of comments, questions and stares almost daily. Nearly everyone seems curious about why she looks the way she does, but not everyone approaches it in a respectful way. Some use very unkind words to describe her, while others seem to only view her through the lens of her different skin, not first and foremost as a child.

And what I’ve found again and again is that parents have a difficult time knowing how to react when their own children notice or have a question about Brenna’s condition.

Physical differences can be found everywhere and are part of everyone, from race to disabilities to body shape, and teaching our children about differences is essential to help them to become accepting, kind and respectful individuals.

There is a never a one-size-fits-all approach, but young children in particular are inevitably going to ask questions about something they see that is different than what they are used to, and it’s important that difference not be a taboo subject. Kids learn by asking and seeing and experiencing, and when they are quickly shushed or removed from a person, they begin to learn that differences are awkward, scary and should be avoided.

I’ve seen firsthand as a parent on the other side of the equation how important it is for children to learn about others and be allowed to ask questions, so they can gain the understanding that usually leads very quickly to acceptance – but the key piece of this is learning how to ask those questions in a respectful and considerate manner.

And so, in that split second when my daughter asked about someone else’s differing appearance, I did what I often wish other parents do when their child asks about mine, rather than getting flustered, reprimanding or pulling their kids away.

I could see that the other little girl was open to this conversation and not at all embarrassed, so I encouraged connection.

“Why don’t you ask her nicely and she might want to tell you herself?” I told Brenna.

Brenna looked back shyly and pointed to the braces she was referring to, “What’s that on your legs?”

The girl’s friendly smile lit up. “Those are leg braces I wear because I have trouble walking. They help me walk,” she told Brenna.

It was a simple encounter and a simple explanation, but I saw quickly that it assured my daughter and allowed her new friend to share more about herself. The pleasant conversation continued without a hint of awkwardness.

Then, a few weeks later, we saw a woman at the store who was also wearing the same type of leg braces as Brenna’s new friend. “Mommy,” she said to me, “that lady uses braces to help her walk, too.”

Brenna not only noticed, but now she also understood – all because she had been able to learn more about someone different than she was in an open and respectful conversation.