5 Tips for When a Child With Ehlers-Danlos Syndrome Feels Left Out of Peer Activities

At some point during childhood, every kid gets left out of something – a get-together with friends, a party, a study group, whatever. But when your child has something that makes them “different,” this usual childhood phenomenon can become even more of an issue.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Our son Michael is 11 and was diagnosed with Ehlers-Danlos syndrome hypermobility type about a year ago. Prior to his diagnosis, he had two knee surgeries and more than a year of physical therapy following a torn ACL and meniscus.

Kids who have been diagnosed with EDS are often advised to avoid certain activities. Michael has been told to avoid sports like tackle football, soccer and lacrosse, because they’re especially tough on hypermobile joints that can injure easily.

But there are also everyday activities parents don’t always think about, which can also be off-limits for some EDS kids. Because Michael had a knee injury that required surgery, his orthopedist recommends that he avoid trampolines. And while this isn’t something that comes up a lot, it’s disappointing when it does. Some of Michael’s friends have trampolines in their backyards, and if there’s a group of kids hanging out and they want to jump, Michael is left out. Or if there’s a party at a trampoline place, it’s just not safe for Michael to participate.  Or he can go and sit out, but that’s not much fun. So he’ll sometimes choose to skip these parties altogether.

We had a relatively big snowfall last week. Michael had some friends who were planning to go sledding on the hill behind the elementary school near our house. He said he didn’t want to go sledding. Granted, Michael has never been a big fan of the snow, but for him, sledding carries more than just the risk of getting that icy mix between his jacket cuff and glove.

As parents, what can we do to help our children manage situations when they might get left out because of their diagnosis? We’ve tried to give Michael some suggestions for what to do:

1.      If there’s something you really wish you could do with your friends but probably shouldn’t, it’s OK to be disappointed. Let’s talk about it.

2.      Try not to blame your friends for leaving you out. They might not even realize an activity is something that might not be safe for you. Fill your friends in about your restrictions so they understand and can think about alternatives when they’re planning.

3.      Even though it might not be easy, if your friends invite you along to a place where you might have to sit out, consider going along anyway. You can keep score, cheer on your friends, talk with one when he takes a break, or you might be able to join them for some part of the activity that’s safe for you.

4.      Be prepared if you can. Michael is supposed to wear a knee brace for some activities, so we’ll suggest that he bring it along to a friend’s house, even if they’re planning to stay inside and play video games. If the plan changes and someone suggests shooting hoops outside, you may decide you want to join them, so it’s always better to be prepared.

5.      Let your teachers, coaches and other adults in charge know what’s going on. We continue to teach Michael how to advocate for himself (and step in to help out when we need to), so the people around him are aware of what precautions he should take and how to help him stay involved and safe.

With a little extra planning and communication, kids with Ehlers-Danlos can stay involved with their peers and activities!