"I work in Early Intervention in California," the email read. "I work with a family who is exploring conversations to have with people who ask, 'What is wrong with ******?' They also want to begin to have simple conversations with their son about how he can explain his CP, and what his older brother might say to his friend when asking why little bro can't walk yet or why he uses a walker or Rifton. The child is going to enter preschool in an inclusive environment. He is very social and talks up a storm. Any recommendation would be helpful."
Like many parents, I could write a book on this. But, here goes. I'll break it down:
How to respond when others ask "What is wrong with your child?"
Let's put aside the use of the word "wrong" for a hot second. Obviously, it's a parent's personal preference whether or not to disclose their child's diagnosis. I've always been open about it: I'll usually say, straight up, "He has cerebral palsy." Depending on the situation, I might go on to explain that Max had a stroke at birth. Over the years, it's gotten easier to react to negative wording like "wrong" because I've learned that I can use the opportunity to help educate people about CP. So I'll add something like, "I just want you to know that to me, nothing is 'wrong' with Max. He's an awesome kid, once you get to know him."
When kids ask what's "wrong" with Max, I usually say that his muscles move a little differently than theirs do, but in many ways he is just like they are. And then I'll encourage them to say "hi" to Max or vice versa.
Then again, you do not have to explain anything at all.
How to explain a child's special needs to a sibling
Keep it age-appropriate and realize it's an ongoing, life-long conversation—so don't put too much pressure on yourself to give the "right" response. When Sabrina was young, for instance, I'd tell her Max had a "boo-boo" on his brain. As she got older, I explained his brain had gotten hurt when he was born. "Since your brain controls your muscle movement," I'd explain, "sometimes it's hard for Max to move certain parts of his body." Then I'd end on a positive like, "But he's doing really well!" or "He's made a lot of progress!" I always point out the stuff Max can do, and emphasize his abilities.
I just got Views From Our Shoes: Growing Up With A Brother or Sister With Special Needs, a book of essays, and plan to read it together with Sabrina. Ditto for Out of My Mind, a popular novel about a girl with cerebral palsy who refuses to let herself be defined by it. Note: There are Sibshops programs nationwide for kids who have siblings with special needs.
How to explain a child's special needs to him
It's been awhile since I've discussed the topic with Max. Last spring, we had a conversation about the term cerebral palsy, and he decided that Lightning McQueen has it, too. Max doesn't think of himself as talking or walking differently than other kids; he just thinks, this is the way I am. He hasn't asked questions about CP, and I'm going to follow his lead on this one. Good books we have read about CP include Ceana Has CP, Rolling Along and I Am Not Weird! (here's a dad reading it to his daughter):
What advice to you have to offer these parents? Please, share.
Have a question you want to crowdsource? Email lovethatmax[at]gmail.com