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Teach kids it's OK to ask about disabilities and illness

Maureen used to be obsessed with baseball -- and then she had children. After she welcomed her son, Charlie, and his extra chromosome, she discovered her passion for writing about Down syndrome and disability-related issues.

With two tod...

Book helps kids move past disabilities to embrace friendship

Have you ever wanted to ask an adult about a visible difference of theirs? Maybe it's a wheelchair or a leg brace, or perhaps something smaller, like a hearing aid. You hesitate, and conventional wisdom warns you that asking would be rude. You must pretend you don't see it! Make eye contact — don't stare at the elephant in the room.

Your paths cross in a swirl of awkward quick glances and tight smiles, and no one is better or worse for the encounter. Or are we?

Imagine that same experience for a child whose filter is undeveloped and whose internally emerging conventional wisdom screams, "Whoa! What is that? I gotta find out!"

Depending on your history of such interactions, that can feel refreshing or panic-inducing.

I've been on both sides. I have a kindergartner with Down syndrome, and when he was a newborn, a child asked why Charlie kept sticking his tongue out.

I was completely blindsided. I stammered and possibly broke out in a sweat. Then I replied with what made the most sense at the time. "He must be thinking about ice cream!"

Brilliant.

More: How to talk to your child's peers about Down syndrome

Children with Down syndrome often have low muscle tone, which affects oral motor skills. As Charlie has grown and strengthened, he can better control his tongue protrusion, but it still happens when he's concentrating hard or feeling tired or just having a moment. I could have given an abbreviated version of this that answered the child's question honestly.

What made the child's question jarring was not the question itself; I should have known it would come. My reaction was based solely on my own fears and lack of mental preparation. Imagine if my husband and I had talked about questions people might ask and prepared ourselves to respond appropriately.

My point is, it should be OK to ask. It should be OK for adults to ask, and it should be doubly, triply OK for children to ask.

Hold on, there. I feel you recoiling. Let's talk this through.

Education is power. Once we understand more about each other, we can move on to the joy of discovering who a person really is beneath an initially distracting surface. I believe if we tackle a difference head-on, we diminish its command of the room. It becomes less fascinating when we better understand it.

I think we all want our children to understand that differences we choose, or differences that occur genetically, don't define us. They just make initially interesting talking points that, eventually, become something that just doesn't really matter.

(Unless, of course, you're 8 years old and desperately jealous of your classmate's ability to careen through the halls in her super-fast wheelchair. Please see articles on "jealousy" and "fascination with speed.")

More: When strangers stare at children with special needs

Sure, I still have moments where I bristle at a new acquaintance's unsure inquiry. But I'm always working to reset myself, because I want my children to feel comfortable fielding questions — and also asking them.

Because the truth is, we all wonder about differences. Why not embrace them from the outset? Won't that help us move forward to the good part, where we learn about each other's hearts and experiences?

Now, let's be realistic. We can't suddenly race through the streets pointing and shrieking, "What is that on your face? Why are you so tall? How does that thing on your leg work?" If we're going to decide it's OK to ask, we need some ground rules.

Like kindness.

It's OK to ask with kindness. Kindness must be a requisite, and so the concept of kindness must become part of our dialogue as adults and parents. Language nuances can become verbal assurances that we don't intend to embarrass or hurt someone by asking a question. Beginning with, "May I ask a question about…?" Or, "I was wondering about… " can mean the difference between making someone feel confronted and helping someone feel safe.

More: People with disabilities encourage "people-first" language

Embracing the philosophy that "it's OK to ask" is why I am totally and completely in love with a new book from Gillette Children’s Specialty Healthcare, illustrated by Nancy Carlson.

It’s Okay to Ask! introduces five children who have disabilities or complex medical conditions. These children all share a love of reading, playing, telling jokes and making friends. The book teaches three main lessons: It’s OK to ask questions, everyone is more alike than you might think, and people of all abilities can be friends.

The best part? You can read the book online for free, and if you want to purchase softcover books, each is $11. All proceeds of the book benefit Gillette Children's Specialty Healthcare.

So, you want to teach your child that it's OK to ask about differences, but you're not sure how to broach that subject on its own? It's Okay to Ask! provides a beautiful intro, whether you read the book online with your child or purchase your own copy.

The book also includes a read-aloud discussion guide that breaks the conversation down into before, during and after stages of reading the book.

Talking to a child about something like disabilities or illness may feel daunting, but the truth is that our children's innocence and inquisitiveness are natural guides, and starting the conversation can be as simple as asking, "So, what do you think Joey likes to do for fun?" Talking about our similarities can lead to an honest Q&A about differences, which is a great opportunity to talk about how we all have differences.

Some parents think these conversations are best addressed when questions arise. Every parent knows his or her own child best, but consider whether you want to wait for questions to bubble and stew in your child's mind before he or she decides to ask. If you broach the subject first, you have a better chance of managing your child's understanding and perceptions. We all remember having perspectives shaped by schoolyard conversations with non-experts.

Here are some guidelines in talking with your child about disabilities and illness.

  • Keep it simple. Most children won't understand the science behind a cognitive or physical disability or a complex illness. Think about what the child needs to know to better understand another person's differences. For example, if a child uses a wheelchair, the most basic explanation can be best. "Joey's legs may not be as strong as yours, but his wheelchair helps him go even faster."
  • Pair an explanation of the difference with an explanation about a strength or similarity to help your child see past the difference. For example, "Kara uses those super-strong glasses to see better, and she loves to read, just like you."
  • Discussing illness can be delicate, because you want to provide information without fear. For example, for a child going through chemotherapy: "David takes medicine to make him feel better, and sometimes the medicine may make his hair fall out. I was thinking we could find a really fun hat to cheer him up and keep his head warm. What do you think?"
  • Address concerns honestly. Seeing a child unable to walk due to an injury may prompt a child to worry that the same thing will happen to him or her. While we can't reassure a child that something like that will never happen, we can talk about how smart doctors are there to take care of us, and whatever happens, we will tackle it together as a family.
  • Use books like It's Okay to Ask! as conversation starters.

Perhaps the most important tips for parents preparing to talk with a child about differences may seem counterintuitive.

  • Listen.
  • Sit in silence.
  • Invite questions, and patiently wait for them to flow.
  • Embrace the child's inquisitiveness.
  • Rather than reacting to a child's blunt remarks, ask the child to consider how he or she might like to be approached about a difference.
  • Talk about what is important to a friendship. While we all have differences, what similarities help friendship blossom?
Plan to revisit the topics periodically with your child to reassess the child's "kindness gauge." Being open to talking about sensitive topics when a child is young establishes a foundation of trust that can benefit a lifetime.

This post was brought to you by Gillette Children's Specialty Healthcare.

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