I remember when it happened. My daughter was 5 years old. She stepped onto the edge of a large rock and her ankle collapsed grotesquely underneath her. I usually don’t react right away, because I’ve seen a lot as an athletic trainer in my days. This one made me react, though. She rolled on the ground and cried for 30 seconds, yet, despite the severity, she bounded back up and ran off. That was the third time I watched her roll the same ankle in that particular week. It made me nervous, but she didn’t bring it up again and it physically appeared as if nothing had happened.
A year and a half later, we found out she had chipped a bone in her ankle. She’d had a random flare up of ankle pain radiating up to her hip for about 24 hours, which then calmed down to an irritating local ankle pain and swelling. She was incredulous when the doctor asked when it had started, and I answered with a time frame of weeks. She said it started years ago and was irritated worse recently with something she did in gymnastics. She had never said anything, so I didn’t know to ask.
I realized I wasn’t listening in the right way.
You see, my daughter has hypermobile Ehlers-Danlos syndrome, just like me and many others in her family. And now I know she has the similar pain distortion that I grew up with.
So, how do we listen to our kids better if they don’t know what’s normal?
We have to teach them what is and isn’t normal and how to listen to their bodies. Start a conversation with them, so you can listen better as well. Here are a few tips on how to figure out a communication strategy with a child that may not be processing sensations as others do:
Some children (and even adults) don’t know daily pain is not normal. Starting from the beginning and explaining that everyone is different is important; some have no pain, some have pain everyday and there is every pain range in between. Pain is something to tell a grown up about, though, so that they can get you the best help possible to make you more comfortable.
2. Teach them types of pain.
Write down descriptions of pain to keep track of, and see if there is a commonality to the reports. Neuropathic (nerve related) pain can be described as radiating, pricking, tingling, burning, hot, or cold. Orthopedic (muscular) pain is sometimes reported as aching, blunt, dull, gnawing, nagging, tender, sore, stinging, or piercing. Psychosomatic pain is pain that is further influenced by emotions and can be described as nauseating, unbearable, tiring, frightful, or “killing them.” Pain is a tricky definition to latch on, as someone may be experiencing a combination of these different types, and they are all important to seek out help and treatment for.
3. Teach them to rate pain.
4. Teach them to track pain.
5. Check-in with emotions.
6. Schedule check-ins.
We do the best we can as parents, and most are hanging on by a thread to do so. Those dealing with a chronic illness in themselves, a child, or both have a very full plate. Things may slide off and onto the floor sometimes. That’s OK. Clean it up when you can. If this sounds like something that would be helpful, see if you can make some room on that plate to fit it in to a routine. If you forget it, it’s OK. Return to it when you need it or remember about it again.
Keep the dialogue open with children experiencing chronic pain. The more often you bring it up, the more they may start to understand their bodies and learn to self-monitor. You can give them the ability, at a young age, to be in tune with what is going on in a body that may seem out of control. This is an invaluable tool that they can carry throughout life.
(This story can also be found at themighty.com)
