As rehabilitation therapists, OTs and PTs are focused on skill building and reaching functional goals with our clients. But feelings influence behavior, and so therapists have to be aware of more than joints and muscles when looking at function. In this post, I would like to address the many ways that hypermobility can create social and emotional issues for children. Without awareness of these experiences, we cannot be the best therapists for these kids, or help parents be the best advocates for their children.
One of the principles of my two books on living with pediatric hypermobility, The JointSmart Child Series , is that this isn’t simply a physical issue. It affects the ways a child is seen, thinks of themself, and how they behave at home and school. Good therapists and good parents can make life easier when they understand this principle and apply it to everyday life.
Because hypermobility varies so widely in it’s severity, it’s presentation (generalized, primarily proximal, or primarily distal) and it’s progression (decreasing with age, or increasing with repeated injuries and overstretching of tissues), the psychological impact on a child will also vary tremendously. The child who has had significant and global hypermobility from birth on will have a very different profile from the young teen who is only recently experiencing functional issues with instability or pain after years of sports-related injuries.
Here are some major points to consider:
- Hypermobility and it’s accompanying effect of stability and proprioceptive processing contribute to both sensory seeking and sedentary behavior, sometimes in the same child. Add in pain and fatigue, and perhaps even POTS or dysautonomia, and you have a kid that is both active and inactive, both attentive and unfocused on tasks at different times of the day. Self-regulation appears to be very unstable. If a child’s entire physical condition isn’t taken into assessment, a referral for an ADHD diagnosis could result.
- Difficulties with mobility and stability make most active play, engagement in sports, and playing a musical instrument more difficult. This has social as well as physical effects on children at all ages. For some kids, they can play but will get injured at a more frequent rate. Other children aren’t able to keep up with their peers on the playground and seek more sedentary or independent activities. And for some other kids, they experience the pain of being the last kid picked for group play or being bullied for the awkward way they move. The child that was more mobile and athletic when younger could now experience a loss of skill or an increase in pain. They are at risk for feelings of depression and fear of moving at all. That fear is a real problem, and one with a fancy name: kineseophobia. This isn’t the same as gravitational insecurity, but it may look like it to a clinician, unless that therapist is aware of a child’s history or all of the current clinical problems. If a child is struggling with being active, check out Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility for some ideas to make things easier. For older kids that struggle with sports or music, read Should Your Hypermobile Child Play Sports? and Hypermobility and Music Lessons: Is Your Child Paying Too High a Price for Culture? because sometimes the question is how to play, not whether to play.
- Kids with hypermobility can have problems with falling and staying asleep, which affects daytime alertness and energy. It is well-documented that a lack of good-quality sleep results in childhood behavioral changes for typical kids. Tired kids can be grumpy, inattentive, more injury-prone, and this cycle is really hard to address. Pain, lack of daytime activity levels high enough to trigger sleep, bladder control issues leading to nighttime awakening or bedwetting, dysautonomia…the list of causes of sleep issues for kids with hypermobility can be really long. Evaluating a child’s behavior without knowing about these issues is going to lead to incorrect assumptions about the source of reactions and interactions. If you are a therapist: ask about sleep quality. If you are a parent: mention sleep issues to your therapists, even if they don’t ask.
- Hypermobile kids can have issues with feeding that contribute to patterns of behavior that extend beyond the dinner table. Difficulty with eating, chewing, and even constipation can result in major behavioral changes. Crankiness is only the beginning. Imagine being constantly constipated, gassy, or regularly gagging/choking on food. The suck/swallow/breathe synchrony that is the foundationof regulation can be affected by many disorders that cause hypermobility. Particularly with younger kids, learning basic social interaction skills at the table can be lost in a parent’s need to alter food choice, or with their anxiety over nutritional needs. The development of persistent oppositional behavior can begin at the dinner table and spill over into all interactions.
- Hypermobile kids don’t always have issues that restrict them from eating; some kids don’t get enough exercise or find eating to be the pleasurable activity that doesn’t take too much energy or skill. Used along with media use or gaming, snacking is something that they can fully enjoy. The extra weight they carry makes movement more difficult and places extra force on joints. But exercising in pain and fatigue isn’t an easy fix…..
- Children develop social and emotional skills in engagement with others. When you spend a lot of time in therapy, it eats into the time available for learning and practicing social skills. The child who attends therapy instead of playdates, the tween that doesn’t have the stamina or stability to go on a ski trip, the child who can’t sit still during a long play or movie… All of these kids are having difficulties that reduce their social interactions to some degree. Encourage the families of the children you treat to be mindful of a child’s whole life experiences and weave interventions into life, not life into interventions.
As therapists, we owe it to our clients to ask questions that help us understand the daily challenges of life and create treatment plans that support a child’s social and emotional development. Waiting for mental health professionals to ask those questions isn’t enough. And remember, if there is a counselor or therapist involved, share what you know about the impact of hypermobility on behavior. Without awareness of the physiological and sensory basis of behavior, professionals may make an incomplete assessment that will not result in progress!
If your child has experienced repeated injuries or surgeries, they qualify as medically complex! Read How OT Can Help Kids With Complex Medical Histories Heal From PTSD to understand why this adds to the emotional challenges and even things like attention and memory!
Are you a parent of an older child with hypermobility? Check out For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps. and Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues for some insights into positive ways to address the future. My book on teens and young adults with hypermobility syndromes is coming out in late 2022! Send me a comment and tell me what YOU want to learn about in this upcoming book!
The JointSmart Child: Volume Two The School Years is filled with practical strategies to help you build skills and confidence in a child aged 5-12. It isn’t just about handwriting; I cover daily living skills, how to select the best backpacks and school tools, but also how to communicate with your teachers, medical providers, and even family members! The extensive appendices have forms you can take to IEP meetings, activities to build skills while having fun, even guidelines to pick out the safest and best fitting bike or scooter.
How can you find my books?
They are available as printable downloads on Your Therapy Source .
They are read-only e-books AND paperbacks (you know you want to highlight and write in the margins!!) on : Amazon
Looking for more information on treating kids with hypermobility? Take a look at Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? , Hypermobile Kids, Sleep, And The Hidden Problem With Blankets and Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?.