Over the weekend, we were invited to a friend’s place for a BBQ. The group of us were long overdue for a visit—the last time our families had gotten together, our kids were just tots. This was the first time they were all old enough to actually care about interacting with one another. It would also mark the first time the other kids would realize Syona may not be able to physically do all the activities they were used to doing.
So, naturally, I thought this would make a good subject to write about here. I emailed my friends in advance and told them about the post I was going to write. They were totally game to be fodder for this blog.
Because I initiated the conversation, my friends sought tips on how to talk to their kids about Syona’s cerebral palsy.
Here’s what I told my friends to tell their kids about my daughter: • Syona's a regular kid, who is going to be four years old soon—but she has a condition called cerebral palsy. It means her body doesn't always do what her brain tells it to do, and her muscles are very tight. She is learning how to walk and uses a walker, wheelchair stroller and some other special gear to help her move around. • She loves interacting with other kids, but sometimes it's hard for Syona to talk so it takes her an extra minute to respond. • Syona loves chocolate, music, and playing. She likes the same things as most other kids. • They can ask her questions about what she wants to play with, and they can help out by getting her stuff for her sometimes. • They can always ask myself or Dilip with any questions they have.
My key tip was for the parents to point out all the common interests they shared with Syona, as opposed to noticing what is different about her.
I also considered what my husband and I did beforehand that helped make the overall experience easier: • We spoke openly with our friends in advance. I decided to offer some insight as to how they can explain cerebral palsy to their kids. I also respected the fact that they knew the best way to approach the matter with their kids. • We brought equipment—a supported seat—that could be moved from the deck, to the grass, to the family room and the basement easily. It provided Syona with a sense of security and ensured she had a safe, supportive place to sit, which made her more comfortable. • We encouraged our friends’ kids to ask us questions, which they did. My favourite moment was telling my friend’s daughter that Syona had a walker. When I started to explain what a walker was, she stopped me and said, “I know what a walker is. My Bubby Ann’s friend has one.” It was a great moment. I told her Syona’s was yellow, and we made a plan for everyone to come over to see Syona’s walker.
The fact that Syona had special needs was a non-factor. The kids found a way to make everything naturally inclusive. It was also a bit of a milestone for us—it was the first social situation where Syona played with kids (who weren’t her cousins) for an extended period of time, without either of us in her immediate vicinity. And she had a lot of fun. As for us, we had moments of kicking back and putting our feet up and enjoying the company of some great friends. And that is what I call a good Saturday night.
What are your tips for talking to your friends’ kids about your child with special needs?