There is nothing worse than using a scientific study that correlates two variables and assuming causation. Translation: If behaviors typical of disorder “A” are seen in a lot of people with problem “B”, we cannot assume that “A” is the cause of their behavior. But we do it all the time. People who love coffee adore studies that say coffee drinkers seem to live longer. People who hate to exercise are validated by reports that find the number of heart attacks after exercise “is increasing”.
When it comes to labeling children’s behavior, we should take a couple of big steps back with our erroneous reasoning. And when the label is ADHD, take three more. Not because ADHD isn’t a big issue for families. The struggles of kids, parents and educators shouldn’t be minimized. But we should be cautious with labels when two situations occur: children at very young ages and trying to make a diagnosis when it is determined largely by clinical observation, not scientific testing. Seeing ADHD in a child with hypermobility is one of those situations.
Hypermobility without functional movement problems is very common in young children. Super-bendy kids that walk, run, hit a ball and write well aren’t struggling. But if you have a child that cannot meet developmental milestones or has pain and poor endurance, that is a problem with real-life consequences. Many of them are behavioral consequences. For more on this subject, take look at How Hypermobility Affects Self-Image, Behavior and Regulation in Children.
Yes, I said it. Hypermobility is a motor problem that has a behavioral component. I don’t know why so little has been written on this subject, but here it is: hypermobile kids are more likely to fidget while sitting, more likely to get up out of their chairs, but also more likely to stay slumped on a couch. They are more likely to jump from activity to activity, and more likely to refuse to engage in activities than their peers. They drape themselves on furniture and people at times. And they don’t feel as much discomfort as you’d think when they are in unusual positions Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way
Why? Hypermobility reduces a child’s ability to perceive body position and degree of movement, AKA proprioception and kinesthesia. It also causes muscles to work harder to stabilize joints around a muscle, including postural muscles. These muscles are working even when kids are asleep, so don’t think that a good rest restores these kids the same way another child gets a charge from a sit-down.
Hypermobility impacts all the things that kids like to do.
Final Thought: If your child has been diagnosed with hypermobile Ehlers-Danlos syndrome, dysautonmia is a fairly common co-occurence. It is not diagnosed as easily as it should be, and the “spacing out”, the moodiness, the fatigue, and the forgetfulness that are all common in dysautonomia are often misinterpreted as behavioral, even psychiatric, problems. This continues even when a child has an hEDS diagnosis, because it is so poorly understood. There are medical treatments for this problem, and when a child who has been told to behave better is treated successfully, the only problem is the regret for all the wasted time and money spent on worthless treatments.
Got a child who whines? You may have a child with a huge issue with frustration and asynchronous development. What is that? A kid whose skills in some areas lag behind his otherwise normal developmental path. Read Got a Whining Child Under 5? Here Is Why They Whine, And What To Do About It to know what to do to turn this ship around.
Read Hypermobility and Music Lessons: How to Reduce the Pain of Playing and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children and Should Your Hypermobile Child Play Sports? to learn how to help hypermobile kids get more out of life with less behavioral problems.
Looking for more practical information about raising your hypermobile child?
I wrote 2 books for you; One for young children, and one about supporting school-age kids!
The JointSmart Child: Living and Thriving With Hypermobility Volume One: The Early Years is your guide to making life easier for your baby, toddler and preschooler.
Read The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today! to learn how my new e-book will build your confidence and give you strategies that make your child safer and more independent…today! The above link includes a brief preview on positioning principles every parent of a child with hyper mobility should know. You can find a read-only download on Amazon and a printable and click-through version on Your Therapy Source.
The JointSmart Child: Living and Thriving With Hypermobility Volume Two: The School Years is an even larger and more comprehensive book for children ages 6-12. Filled with information on how to pick the right chair, desk, bike and even clothes that make kids safer and more independent; this book is for parents and therapists that want to make a real difference in a child’s life and feel empowered, not confused. It is available on Your Therapy Source as a printable download and on Amazon as an e-book, and don’t worry: you can download it from Amazon on your iPad as well as your Kindle. Amazon makes it easy!
When a hypermobile child starts to move, the brain receives more sensory input from the body, including joints, skin and muscles. This charges up a sensory system that was virtually starving for information. Movement from fidgeting and movement by running around the house are solutions to a child’s sense that they need something to boost their system. But fatigue can set in very quickly, taking a moving child right back to the couch more quickly than her peers. It looks to adults like she couldn’t possibly be tired so soon. If you had to contract more muscles harder and longer to achieve movement, you’d be tired too! Kids develop a sense of self and rigid habits just like adults, so these “solutions” get woven into their sense of who they are. And this happens at earlier ages than you might think. Take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children to understand a bit more about this experience for hypermobile kids.
Then there is pain. Some hypermobile kids experience pain from small and large injuries. They are more likely to be bruised, more likely to fall and bump into things, and more likely to report what pediatricians may call “growing pains”. Sometimes the pain is the pull on weak ligaments and tight muscles as bones grow, but sometimes it isn’t. Soreness and pain lead some kids right to the couch. After a while, a child may not even complain, especially if the discomfort doesn’t end. Imagine having a lingering headache for days. You just go on with life. These kids are often called lazy, when in truth they are sore and exhausted after activities that don’t even register as tiring for other children their age.
How can you tell the difference between behaviors from ADHD and those related to hypermobiilty? I think I may have an idea.
After a hypermobile child is given effective and consistent postural support, sensory processing treatment, is allowed to rest before becoming exhausted (even if they say they are fine), and any pain issues are fully addressed, only then can you assess for attentional or emotional problems. Some days I feel like I am living in a version of “The Elephant and the Six Blind Men”, in which psychiatrists, psychologists and pediatricians are all saying that they see issues with sensory tolerance, movement, attention, pain and social development, but none of them see the whole picture.
Occupational therapists with both physical medicine and sensory processing training are skilled at developing programs for postural control and energy conservation, as well as adapting activities for improved functioning. They are capable of discussing pain symptoms with pediatricians and other health professionals.
I think that many children are being criticized for being lazy or unmotivated, and diagnosed as lacking attentional skills when the real cause of their behaviors is right under our noses. It is time to give these kids a chance to escape a label they may not have.
Share Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue? with your therapist and see what reactions you receive. The truth is that many kids don’t get a diagnosis as early as possible. Rare syndromes aren’t the first thing your pediatrician is thinking of, but you can raise the issue if you have more information and feedback.
Looking for more posts on hypermobility? Check out Should Hypermobile Kids Sit On Therapy Balls For Schoolwork? , Hypermobile Kids, Sleep, And The Hidden Problem With Blankets and Should Your Hypermobile Child Play Sports? for useful strategies to manage hypermobility and support both physical health and functional skills.