After my daughter Nella was born and diagnosed with Down syndrome, it wasn’t long before friends were asking how to approach the subject of Down syndrome with their children. They wanted, of course, to inform them appropriately and encourage awareness and acceptance and wondered, from a parent’s perspective, what it was that I wanted kids to know. The funny thing was, I didn’t even know myself how to explain things to my daughter’s older sister. I did, however, trust that the right words would always come at the right time—and they have.
Talking to your kids and addressing their natural curiosity of unique abilities is important though. Sometimes, in fear that we might say the wrong thing, we don’t say anything at all, or we tense up in our response—a reaction that can inadvertently teach our children that the subject of differently-abled individuals is something to be whispered about in private, and it’s not. The fact that each of our bodies, our minds and our abilities is unique is as common a topic as weather, and appropriately introducing and responding to this discussion is essential in teaching our next generation how to approach the topic of special needs—hopefully proactively, inclusively and compassionately.
Nella may still only be 4 years old, and we continue to learn more about who she is; but we do have a greater understanding of what we want friends and acquaintances to know about Down syndrome. While there isn’t one right way to address special needs with your children, these suggestions might guide you in having important conversations with them—information is power.
Deliver Age-Appropriate Information A 3-year-old isn’t going to understand what a chromosome is, but a 6-year-old might be able to make sense of the basic physiological concept of Down syndrome—that our bodies are made up of millions of tiny cells, that every cell has information about us hidden in sets of chromosomes and that people with Down syndrome have one extra chromosome in their cells. Because of this extra chromosome, people with Down syndrome have softer muscles which means physical challenges are more difficult for them. They might speak differently, learn differently and need more time to accomplish tasks. But the science of the human body and the way it works is phenomenal, and cell alterations and physical challenges are part of those naturally occurring phenomenon. Kids can certainly understand that there are infinite physiological things in our bodies that might make us different from our hair color to our ability to walk and talk, but that the way we really define people is by who they are on the inside—our likes and dislikes, our talents, our interests, the way we laugh and share and dream. People with Down syndrome share all of those characteristics!
Teach Empathy, Avoid Pity Empathy develops from self-awareness, and identifying special needs in a personal way is a great way to teach your child compassion. Great questions to promote empathy, especially in kids who are a little bit older, are: What things are challenging for you? Have you ever felt different from others? How would that make you feel? What do you guys have in common? What would you want people to say to you? How would you want people to treat you?
There’s a difference between pity and empathy, so be careful not to talk about friends with special needs in a way that sounds like you feel sorry for them. We avoid phrases like “poor Nella” or “Isn’t that sad?” and focus on the facts—she has unique needs, some things are more challenging for her, she might need extra help. Smile when you talk about these things with your child. Special needs isn’t something that should evoke sadness, and if you’re positive when you discuss these topics, your children will follow your lead in the way they think about them.
Expand Differences and Relate Them to the Great Big World When talking about a friend with special needs, remember to teach “big picture.” This isn’t just the girl in your child’s class or the boy on his soccer team. Special needs are everywhere, and everyone has different versions of them. Remind your child that as he grows up, he’ll have many opportunities where he will feel challenged or different, and he’ll meet lots of people with different challenges too. When I talk about Down syndrome with my older daughter, I expand to other special needs to which she can relate. Remember your friend Sarah who has to use that little breathing tool for her asthma? Or your friend Madison who has a peanut allergy? Remember that man we saw who uses a wheelchair to get around because his legs aren’t strong? Down syndrome is just one thing that makes Nella unique just like there are things that make everyone unique. The bottom line? Look around you! We are all so beautifully different, and that’s awesome.
I also like to address with my kids the wonderful resources that are available to help us all enjoy the best life we can possibly have. We all use some kind of resources from doctors, therapists and special teachers to wheelchairs, oxygen tanks and insulin pumps.
Address Misconceptions and Discrimination A friend of mine created a great way to address stereotypes and misconceptions about Down syndrome with her daughter’s classmates. She faces them head on every year by passing out a handout to students in her daughter’s class on World Down Syndrome Awareness Day. The handout includes facts like “Down syndrome is not a disease,” as well as compassionate tools classmates can use in communicating with her daughter: “Morgan has feelings just like you. It makes her sad when people make fun of her or ignore her. Treat your friend with DS the same way you would any other friend.”
Other important lessons to address with your child: Never use anyone’s disability to make them feel small. Never exclude someone because they are different. Never use the word “retard” or “retarded” as a funny way to describe someone or something. People with disabilities are very sensitive to this word. If you hear friends using the word “retarded” as a way to poke fun, educate them and ask them to please stop.
Most Important: Teach People First
Kids don’t know any better than to innocently follow their curiosity—to stare at things that might be unfamiliar to them—the way someone walks differently, a girl in a wheelchair, or a person who struggles to speak clearly. The more they experience these things and hear about them from you, the more familiar they will be with them. It is so important to me to teach my kids to look beyond those differences to see people. Behind every wheelchair and speech impediment is a person with favorite hobbies, favorite books, friends who love them and dreams for the future. What do I want other kids to know about Nella? That she’s just like any other kid. She plays outside, kicks a ball, reads books, loves the Fresh Beat Band, sings songs, adores her siblings and enjoys learning new things. Focus on these things when talking about special needs. Look for opportunities in your everyday experiences to continually educate your child, break stereotypes and promote inclusion, acceptance and compassion.
Want to go a step further? Proactively seek these opportunities. Find out about the special needs program in your child’s school and ask about opportunities for your child to get involved—reading buddies or recess. Research your community’s events such as Special Olympics or Buddy Walks and bring your family to participate.
By educating your children, you are building their future.
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