I didn’t grow up knowing any kids with special needs other than Adam, a regular at a resort our families visited every summer. He was cognitively impaired. Kids made fun of him. I’m embarrassed to admit that I did, too; my parents had no idea. They were wonderful parents, but they never thought to have a conversation with me about kids with special needs.
Then I had my son, Max; he suffered a stroke at birth that lead to cerebral palsy. Suddenly, I had a child who other kids stared at and whispered about. And I so wished their parents talked to them about kids with special needs.
Because nobody got the parenting memo, sometimes moms and dads aren’t sure just what to say. I totally understand; if I didn’t have a kid with disabilities, I’d also feel at a loss. So I reached out to moms of kids with autism, cerebral palsy, Down syndrome and genetic conditions to hear what they wished parents would teach their children about ours. Consider it a guide, not a bible!
1. First up, please don’t pity me
Yes, at times I have a lot to deal with—but what I don’t have is a tragedy. My son is a bright, funny, generally amazing kid who brings me much joy and who drives me nuts at time. You know, like any kid. Pity me and your child will get the idea that my son is to be pitied, not played with. Act like you do around any parent. Act like you do around any child.
— Ellen Seidman of Love That Max; mom to Max, who has cerebral palsy
2. Teach your kids not to feel sorry for ours
When Darsie sees kids (and adults!) looking and staring, it bothers her. My daughter doesn’t feel bad for herself. She doesn’t mind the brace on her foot. She doesn’t feel sorry for herself. She’s a great girl who loves all thing horses and reading. She is a kid who wants to be treated like any other kid—so what if she limps. Our family celebrates differences, rather than mourns them, and we invite you to do the same.
— Shannon Wells of Cerebral Palsy Baby; mom to Darsie, who has cerebral palsy
3. Play up what kids have in common
There will come a time when your young child starts asking you questions about why someone’s skin is that color, or why that man is so big or that lady so short. When you’re talking to your child about how everyone is different and we are not all made the same way, mention people who have disabilities as well. But be sure to talk about the similarities, too—that a child in a wheelchair still likes to listen to music and watch TV and have fun and make friends. Teach your children that those with disabilities are more alike them than they are different.
— Michelle of Big Blueberry Eyes; mom to Kayla, who has Down syndrome
4. Help kids understand there are many forms of expression
My son Benjamin makes loud, yelpy sounds when he’s excited. Sometimes he’ll jump up and down and flap his arms, too. Tell your kids that the reason children with autism or other special needs do this is because they have trouble saying words and this is how they express themselves when they’re happy, frustrated or sometimes even because of how their bodies are feeling. It can be surprising when Benjamin is noisy, especially if we’re in a restaurant or movie theater. So it’s important to know he can’t always help it, and that usually it’s just a sign that he’s having fun.
— Jana Banin of I Hate Your Kids (And Other Things Autism Parents Won’t Say Out Loud); mom to Benjamin, who has autism
5. Know that making friends with a kid who has special needs is good for both kids
In 2000 when my son was diagnosed with autism I had a very difficult time securing playdates for him. A lot of parents scattered, mostly out of fear and ignorance. It got back to me that one mom worried my son’s autism was “contagious.” Ouch. Thirteen years later, I am so blessed to have a handful of amazing families who have embraced my son in a way that has been so beneficial to his social development. I get the chills thinking about it. The best thing a parent ever told me was how much my son’s friendship meant to her son! That his connection with RJ made her son a better person. It was such a beautiful thing to say. When we first got that diagnosis we were told he’d never have friends. The friends he has now would beg to differ. It was their parents who facilitated these friendships, and for that I am forever grateful.”
— Holly Robinson Peete founder (with husband Rodney Peete) of the Hollyrod Foundation; mom to RJ, who has autism
6. Encourage your kids to say “Hi”
If you catch your kid staring at mine, don’t get upset—you may worry he’s being rude but kids do check each other out. Yes, pointing is obviously not the best manners and if a child points at a kid with special needs you should tell him that’s not polite. But when you see your kid looking at mine, tell him that the best thing to do is to smile at him or say “hello.” If you want to explain further, tell your child that people with special needs don’t always respond the way we expect, but it’s still important to treat them like everyone else.
— Katy Monot of Bird On The Street; mom to Charlie, who has cerebral palsy
7. Encourage kids to keep talking
Kids often wonder whether or not Norrin can talk, especially when he uses his high-pitched jargon. Explain to your child that it’s okay to approach another kid who may sound a little different. Some children may not be able to answer back as quickly, but that doesn’t mean they don’t have anything to say. Ask your child to think of their favorite movie, place to visit or book—chances are, the other kid likes it too. And the only way to find that out, is if they ask, the way they would any other kid.
— Lisa Quinones-Fontanez of Autism Wonderland; mom to Norrin, who has autism
8. Keep explanations simple
Sometimes I think we parents tend to complicate things. By using something our children already know, something they can relate to, helps special needs become personal and easier to understand. I realized this a few years ago when my cousin asked me why William communicated so differently than he and his siblings did. When I told him he was just born that way his response was very matter of fact: “Oh, like I was born with allergies.” He knew what it was like to live with something you had to adjust for on a daily basis. Had I told him that William’s mouth muscles have a hard time forming words, the concept would have flown over his head. But he could relate to allergies. Simplicity is key.
— Kimberly Easterling of Driving With No Hands; mom to William and Mary, who have Down syndrome
9. Teach kids respect with your actions
Children learn more from your actions than your words. Say hello to my child. Don’t be afraid or nervous around her. We’re really not that different from you. Treat my daughter like you would any other child (bonus points for commenting on her gorgeous hair)! If you have a question, ask it. Talk with your child about how everyone is good at different things, and how everyone has things they have to work harder at. If all else fails, quote Addison’s brother: “Well, everyone’s different!”
— Debbie Smith of Finding Normal; mom to Addison, who has trisomy 9
10. Help kids see that kids who can’t talk still understand
We were walking across the playground and my daughter’s classmate kept staring at my son, who has autism and cerebral palsy. My daughter called the child out in an instant: “You can say hello to my brother, you know. Just because he doesn’t talk doesn’t mean he can’t hear you.” Jack doesn’t speak very often, but he listens to everything around him. Teach your children that they should always assume special needs children can understand what is being said, even if they can’t talk. That’s why they wouldn’t say “What’s wrong with him?” but might say, “How are you?”
11. Kick-start the conversation
We were at the children’s museum and a little boy was staring at Charlie with his walker and his mom whispered to him not to stare because it was rude. Instead, I wish she would have said “That is a very interesting walker, would you like to ask the little boy and his mom more about it?”
— Sarah Myers of Sarah & Joe (And Charlie Too!); mom to Charlie, who has cerebral palsy
12. Don’t worry about embarassment
Let’s agree to not panic if your kid happens to say something that’s embarassing. You know, like if we’re in line at Starbucks and your child checks out Maya and me and says something like “Yuck! Why is she drooling?” or “You’re fatter than my mommy.” While these might not be ideal conversation starters, they show that your child is interested and curious enough to make contact and ask. Please don’t stammer “I’m so sorry” and drag your child away. Go ahead and silently mouth the apology if you need to, but let me bridge the gap—I’ll explain the drooling and introduce Maya and, say, her love of alligators and you can play the supporting role, chiming in “Remember when we saw alligators at the zoo?” or whatever. By the time we’ve reached the register the awkwardness will have faded, Maya will have enjoyed meeting someone new, and I will be hopeful that your child has gotten to see Maya as a funny little kid, rather than just a drooly one. (And I’ll just pretend that I didn’t hear the “fatter than my mommy” thing.)
— Dana Nieder of Uncommon Sense; mom to Maya who has undiagnosed genetic syndrome