Sometimes it must seem that OTs and PTs are the ultimate buzz killers. “Don’t do gymnastics; it could damage your knees” and “I don’t recommend those shoes. Not enough support”. Just like the financial planner that tells you to sell the boat and save more for a rainy day, we therapists can sound like we are trying to crush dreams and scare families.
Nothing could be further from the truth! Our greatest wish is to see all children live their lives with joy, not pain and restriction. Hypermobile children that grow up understanding their body’s unique issues and know how to live with hypermobility are “joint smart” kids. The kids who force their bodies to do things that cause injury or insist on doing things they simply cannot accomplish face two kinds of pain; physical pain, and a feeling that they are failing for reasons they cannot fathom.
Pain at a Young Age?
Very young children with hypermobility don’t usually see OTs and PTs for pain, unless they have JRA or MD. The thing that sends them to therapy initially is their lack of stability. Some impressively hypermobile kids won’t have pain until they are in middle age. Pain (at any age) usually results from damage to the ligaments, tendons and occasionally the joints themselves. When the supporting tissues of a joint are too loose, a joint can dislocate or sublux (partial dislocation). This is often both painful and way too frequent for hypermobile kids. Strains and sprains are very common, and they happen from seemingly innocuous events. Other tissues may bruise easily as well, creating more pain. Disorders such as Ehlers Danlos syndrome can affect skin and vessel integrity as well as joint tissue, so it is not uncommon to see bruising “for no reason” or larger bruises than you would expect from daily activity.
Becoming JointSmart Starts With Parents
So…does your child even understand that they are hypermobile? If they are under 8, almost certainly not. Do they know that they have issues with being unstable? Probably. They may have been labeled “clumsy” or “wobbly”, even weak. Labels are easy to give and hard to avoid. I suggest that parents reframe these labels and try to take the negative sting out of them. Pointing out that people come in an amazing variety of shapes and abilities is helpful, but the most important thing a parent can do is to understand the mechanics, the treatment and how to move and live with hypermobility. Then parents can frame their child’s issues as challenges that can be dealt with, not deficits that have cursed them. How a parent responds to a child’s struggles and complaints is key, absolutely key.
The first step is teaching yourself about hypermobility and believing that options exist for your child. Ask your therapists any questions you have, even the ones you are afraid to ask, and make sure that your therapist has a positive, life-affirming perspective. Most of us do, but if you are at all anxious or worried, it really helps to hear about what can be done, not just what activities and choices are off the table. If you blame yourself for your child’s hypermobility, get support for yourself so that your child doesn’t feel that they are burdening you. They don’t need that kind of baggage on this journey.
Even when we are optimistic and creative as therapists, it doesn’t mean that we won’t tell you our specific concerns about gymnastics and Crocs for children with hypermobility. We will. It would be unprofessional not to. But we want you and your child to develop the ability to understand your options, including the benefits and the drawbacks of those options, and give you the freedom to make conscious choices.
Now that is being smart!
