Blog PostsSep 10, 2019

How To Talk To Your Child’s Class About Spina Bifida

By Colleen Payne

Republished with permission from a 2013 post on her personal blog 

A few weeks ago, Nate told us about a boy in his class who had been teasing him. This boy excluded Nate from his birthday party, made fun of him on the playground, and implied he was a baby. Nate was really upset about it, and so were we. I emailed his teacher and asked if she had seen any of this behavior and asked if she had any suggestions for dealing with this. Then we had a long talk with Nate about how, unfortunately, all kids get made fun of at one point or another. The important thing to remember that he is liked and loved and this one kid’s opinion doesn’t really matter. The next day the school counselor had a talk with the boy, and ever since he has been very nice.

After hearing the details of this teasing, it was pretty obvious it was related to Nate having Spina Bifida. (I’m not one to jump to playing that card, but really, it was.) So I talked with the counselor and Nate’s teacher about coming to speak to his class about Spina Bifida. Now, I talk to groups about Spina Bifida all the time. That’s part of my job. At least a couple times a month I’m speaking to a college class or group for an hour or two at a time. But 6 and 7 year olds? Who happen to be in the same class as my son? That is way more intimidating.

On Thursday I was in a meeting with an SB clinic nurse, and I mentioned I would be talking to Nate’s class the next day. She said she would love to see that so she can make suggestions to other parents about how to deal with teasing at school, so she came to observe the class! (Again, I’ve never done this. No pressure.) Nate was VERY excited about this, by the way. So after much thought, and practicing with Nate, here’s what I came up with:

Me: Nate and I are here to talk to you about how we all have things in common but we have some differences too. So let’s think about some things we have in common. Who here likes … ice cream?

(Everyone raises hands excitedly)

Me: Who likes …. recess?

(Everyone raises hands. One kid asks what recess is, and another tells him that means playtime. Note to self: they don’t call it recess anymore.)

Me: Who likes … playing Legos?

(Everyone raises hands.)

Me: Wow, we all have a lot in common! I bet we have some differences too, though. How many of you has a sister?

(About half raise their hands.)

Me: How many of you wear glasses?

(Not a dang one of them! But they wanted to tell me about their brothers/parents/grandparents who did.)

Me: How many of you are allergic to something?

(Ooh! Ooh! Like half of them were, and they all wanted to tell me what. That took a few minutes.)

Me: So we all have a lot in common, but we also have things about us that are different. That’s not a bad thing, it just makes us interesting and special, right? Okay, one more. Who here has Spina Bifida?

Right on cue, Nate raised his hand, while all the kids looked around asking, “What’s that?” So I asked Nate to tell them what it was.

Nate: Um, it’s when a baby is born with a hole in its back.

Me: That’s right. Inside your back is what’s called your spine, and inside there is these things called nerves. Nerves make your muscles work. So when a baby has a hole in its back, those nerves can get damaged and not work as well. Sometimes that means the baby’s legs are not as strong. Some kids even need to use a wheelchair. Do we know anyone who uses a wheelchair?

Kids: Ooh!!! Yeah! Olivia does! (Olivia is in their class but was not there that day.)

Me: Yes, Olivia does not have Spina Bifida, but kids need to use wheelchairs for all kinds of reasons. Now, does anyone know if Spina Bifida is contagious? Can you catch it?

Some of the kids: Yes, I think so.

Me: Nope, Spina Bifida is not contagious. You cannot catch it. You’re either born with it or you aren’t, and you can’t get it later when you’re older.

Kid: So what happens to the hole in the baby’s back?

Me: Great question. A doctor does a surgery to close the hole in the back to keep it from getting damaged more. Do you know what a surgery is? It’s what a doctor sometimes needs to do to fix a boo boo. And you know what’s really cool? Nate had the hole in his back fixed before he was even born! When he was still in my belly! He’s one of only a few hundred kids in the whole world who has done that!

Kids: Wow!!! That’s so cool!

Me: Who was in Ms. McKinley’s class last year with Nate?

(About 5 or 6 kids raise their hands.)

Me: Do you remember when Nate was gone for a really long time?

Kids: Yeah, he was gone forever!

Me: Nate, tell them what kind of surgeries you were having.

Nate: I had 3 surgeries on my back and one on my brain!

Kids: Whoah!!!

Me: Nate, do you want to show them the scar on your back?

Nate hopped up and I lifted his shirt in the back. At first, some of the kids were kind of horrified.

Me: It doesn’t hurt him! He can’t even feel it. Sometimes he forgets it’s even back there.

Nate: I call it my train tracks.

Kids: Hey, it does look like train tracks! Yeah, like train tracks going up a hill. Hey, Nate’s mom? You could take a picture of his back and show it to him. Or you could sit him on the bathroom sink and let him look at his back.

Me: Those are all great ideas!

Then I showed a slideshow of pictures from when Nate was born through now. I wish I could show it on here, but I don’t know how to upload a powerpoint presentation. I was careful to choose photos that weren’t at all sad. But I did include some of him with equipment, like in his stander (banging on my laptop), in his walker (in an Elmo costume), and in a wheelchair (after his surgery, again in costume) as well as some of him just looking cute or holding his siblings as babies. All the kids laughed and oohed and aahed and said “how cute!” I set it to this song, which I love and think is perfect and positive and just long enough: What I am by Will.I.Am on Sesame Street. For anyone who wants to use this, I could not find it on iTunes, so I had to download it from mp3Skull or something like that? It looked kind of sketchy but I haven’t had problems so far.

Me: So, Nate, what kinds of things do you need to do because you have Spina Bifida?

Nate: Like, PT and OT?

Me: Yeah, tell us what you do in PT and OT.

Nate: I run and ride a bike and walk on a treadmill and color and cut, and I’ve gotten to swim before and ride a horse.

Kids: Wow, cool!

Me: Do you like PT and OT?

Nate: Yeah, they’re fun.

Me: And what about those things you wear on your feet?

Nate: Oh, these are my braces (lifting pants up). They help me run faster.

I had brought a couple pairs of his old braces and passed them around so everyone could see and touch them.

Me: Is there anything that’s harder for you because you have Spina Bifida?

Nate: Well, it’s harder to jump rope.

Me: So I hear you guys have been jumping rope in gym, right? Well, Nate gets frustrated because it’s hard for him. So you know what I tell him?

Kids: When something is hard, just keep practicing! Hey, Nate’s mom? I’m really good at jumping rope–I can teach him!

Me: That is very thoughtful! Yes, if he wants to be good at jumping rope, he will need to practice. But you know what else? We all don’t have to be good at everything. Even if he’s never good at jumping rope, that’s ok because Nate is good at lots of other things. Like spelling–Nate is a great speller! And he’s also very musical. Nate, what kinds of instruments do you play at home?

Nate: Guitar, piano, drums, harmonica, accordion … and probably some others.

Okay, let’s pause here. Remember the kid who had bullied Nate a few weeks ago? He raised his hand and said, “Nate’s mom? Can Nate come over to my house so we can start a band?

My heart melted.

Me: That’s a great idea! Who else wants to be in the band?

(Everyone wanted to be in the band.)

Me: So that’s what we wanted to tell you–that even though we all have some things that are different about us, we still have a lot of stuff in common and those differences just make us special. Does anyone have questions?

Kid: Does Spina Bifida hurt?

Me: Does it look like Nate hurts? (At this moment, Nate was doing a little jumpy dance. Everyone laughed and said nooooooo.)

So that was the gist of it. I was so happy with how it went. And do you know what’s crazy? The little former bully is now Nate’s best friend, and they sit together at lunch every day. I don’t presume this will prevent all future bullying. But for now, his classmates totally accept him. 

Colleen Payne is mom to a teenager with Spina Bifida. She lives in Louisville, Kentucky, with her husband and three children.