I ran across a comment piece online that recommended parents teach their hypermobile children to “listen to your body” to pace activities in an effort to avoid fatigue, pain or injury. My reaction was fairly strong and immediate. The sensory-based effects of hypermobility (HM) reduce interoception (internal body awareness) and proprioception/kinesthesia (position and movement sense, respectively). These are the main methods of “listening” we use to know how we are feeling and moving. For children with HM, telling them to listen to their body’s messages is like telling them to put on their heavy boots and then go outside to see how cold the snow is!
Relying primarily on felt senses when you have difficulty receiving adequate sensory feedback doesn’t make…..sense. What often happens is that kids find themselves quickly out of energy, suddenly sore or tripping/falling due to fatigue, and they had very little indication of this approaching until they “hit a wall”. They might not even see it as a problem. Some kids are draped over the computer or stumbling around but tell you that they feel just fine. And they aren’t lying. This is the nature of the beast.
I am all for therapy that helps kids develop greater sensory processing (as an OTR, I would have to be!), but expecting HM kids to intuitively develop finely tuned body awareness? That is simply unfair. Kids blame themselves all too easily when they struggle. What begins as a well-meaning suggestion from a person with typical sensory processing can turn into just another frustrating experience for a child with HM.
What could really help kids learn to pace themselves to prevent extreme fatigue, an increase in pain and even injury due to overdoing things?
- Age-appropriate education regarding the effects of HM. Very young children need to follow an adult’s instructions (“time to rest, darling!”), but giving older kids and teens a medical explanation of how HM contributes to fatigue, pain, injuries, etc. teaches them to think. Understanding the common causes of their issues makes things less scary and empowers them. If you aren’t sure how to explain why your child could have difficulty perceiving how hard they are working or whether they are sitting in an ergonomic position, read Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for some useful information. You could ask your child’s OT or PT for help. They should be able to give you specific examples of how your child responds to challenges and even a simple script to use in a discussion. Explaining the “why” will help children understand how to anticipate and prepare for the effects of HM.
- Consider finding a pediatric occupational therapist to teach your child postural, movement and interoceptive awareness, adapt your child’s learning and living environments for maximal ease and endurance, and teach your child joint protection techniques. Occupational therapists are often thought of as the people that hand out finger splints and pencil grips. We are so much more useful to your child than that narrow view! For example, I have adapted desks for optimal postural endurance and decreased muscle tension. This has immediate effects on a child’s use of compensations like leaning their chin on their hand to look at a screen. OT isn’t just for babies or handwriting!
- Pacing starts with identifying priorities. If you don’t have boundless energy, attention, strength and endurance, then you have to choose where to spend your physical “currency”. Help your child identify what is most important to them in their day, their week, and so on. Think about what gives them satisfaction and what they both love to do and need to do. This type of analysis is not easy for most kids. Even college students struggle to prioritize and plan their days and weeks. Take it slow, but make it clear that their goals are your goals. For many children with HM, being able to set goals and identify priorities means that they will need to bank some of their energy in a day or a week so that they are in better shape for important events. They may divide up tasks into short components, adapt activities for ease, or toss out low-level goals in favor of really meaningful experiences. Can this be difficult or even disappointing? Almost certainly! The alternative is to be stuck at an event in pain, become exhausted before a job is completed, or end up doing something that places them at higher risk for injury.
- Help your child identify and practice using their best strategies for generating energy, building stamina and achieving pain-free movement. Some kids with HM need to get more rest than their peers. Others need to be mindful of diet, use relaxation techniques, wear orthotics regularly, adapt their home or school environment, or engage in a home exercise program. Learning stress-reduction techniques can be very empowering and helps kids think through situations calmly. Creating a plan together and discussing the wins and failures models behaviors like optimism and resourcefulness. Children depend on adults to show them that self-pacing is a process, not an endpoint.
Looking for more information to help your child with hypermobility? Take look at The Hypermobile Hand: More Than A Strength Problem, Should Your Hypermobile Child Play Sports? and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children. My e-books on pediatric hypermobility are coming out soon! Check back here at BabyBytes for updates.