When most parents think of sensory processing issues, they think of the children who hate clothing tags and gag on textured foods. Joint hypermobility, regardless of the reason (prematurity, Ehlers-Danlos syndrome, head injury, etc) can result in kids who stumble when they move and wobble when they rest. They are seen by orthopedists and physical therapists, and told to build up those weak muscles. Well, hypermobile kids have sensory processing issues too! And they deserve more effective treatment for these issues than they typically receive.
Lack of joint integrity, especially decreased joint stability, results in a decrease in proprioception and kinesthesia. These two under-appreciated (and poorly explained) senses tell a child about her body’s positions and movements without the use of vision. The literature out there is sparse.
If you are hoping that a lot of research on this topic exists, and you think your pediatrician understands why your child can’t grasp a pencil but can squeeze the @@#$% out of Play-Doh, good luck.
Who will believe AND understand you? Your OT!
Most of the scientific research into proprioception and hypermobility has been done by PTs, and is focused on proprioception in the leg. They are interested in how it affects mobility.
The problems with poor proprioception and kinesthesia go far beyond walking.
Essentially no research has been done on hand function or the practical application of research to living skills of any kind when it comes to hypermobility syndromes and proprioception. But OTs can teach you and your child’s classroom staff about the connections between sensory processing and motor performance. They can help your child improve skills based on their knowledge of neurology and function.
Here is a simple explanation of how proprioception and kinesthesia affect function:
Consider the process for touch-typing. Your awareness of your hand’s position while at rest on the home row is proprioception. You know where your movement starting and end points are via proprioception without looking. Your awareness of the degree of movement in a joint while you are actively typing is kinesthesia. Kinesthesia tells you that you just typed a “w” instead of an “e” without having to look at the screen or at your fingers.Your brain “knows”, through learned feedback loops, that your finger movement was too far to the left to type the letter “w”, but far enough to have been a “e”. Teachers and others call this “muscle memory”, but that is a misnomer. Muscles have no memory; brains do. And brains that aren’t getting the right information send out the wrong instructions to muscles. Oops!
You are able to grade the amount of force on each key because your skin, joint and muscle sensors transmit information about the resistance you meet while pressing down each key. Your brain compares it previous typing success and the results on the screen, and makes adjustments in fractions of a second. This is sensory processing at work.
Why do children with hypermobility have proprioceptive and kinesthetic processing problems? Because information from your body is transmitted is through receptors embedded in the tissue within and surrounding the joints. These receptors respond to muscle and tendon stretch, muscle contraction, and pressure within the joint. Joint hypermobility creates less stimulation (and thus less accurate information) to these sensory receptors. Like the game at the carnival, the ball isn’t hit hard enough to ring the bell at the top of the post. The sensory information coming into the brain is either insufficient or delayed (or both), and therefore the brain’s output of directions to achieve postural stability or dynamic movement is correspondingly poor.
This shows up as a collapsed posture, difficulty quickly changing positions to catch a ball or leap over an obstacle, a heavy-footed gait, and a whole lot of other difficulties. One of the most common issues are the awkward or extreme positions these kids get into, and sometimes strongly prefer. They look like they should be in pain, but they aren’t. Read more about what to do when your child insists on sitting in a position that could harm them in Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way
What should parents be looking for when they wonder if proprioception is affecting their child’s functional performance?
- Kids can become very unsafe very quickly when they aren’t able to perceive changes in balance or position and respond fast and accurately. This isn’t a small issue. It is important that parents understand how important safety is to development. For strategies that work, read Why Injuries to Hypermobile Joints Hurt Twice , Joint Protection And Hypermobility: Investing in Your Child’s Future and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing
- Has your child been described as fidgety or distracted? Read Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior. I believe that many hypermobile children are misdiagnosed and even medicated incorrectly. When the side effects of the medication place them at greater risk for balance issues and fatigue, it is often time for a difficult discussion with the treatment team and the parents.
- Hypermobility can even make speech and feeding more challenging. Read Can Hypermobility Cause Speech Problems? to learn more about the signs that your child may benefit from speech therapy as well as OT and PT. Does your child struggle with pencil grasp? An atypical grasp can actually be helpful, but you need to know which patterns are harmful and which support performance. Please read Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility? , and For Kids With Sensory Issues and Low Tone, Add Resistance Instead of Hand-Over-Hand Assistance for more information that you can share with your child and teachers as well.
- Mild hypermobility is still an issue. Because many hypermobile children are able to accomplish the basic developmental milestones within a reasonable time period, pediatricians don’t pick up on mild hypermobility until kindergarten. This is when sitting at a table for longer periods becomes the expected norm, and holding a pencil in a mature way is required. Many mildly hypermobile kids simply cannot use a tripod grasp effectively to write. To learn more about why your child’s grasp is an issue, take a look at The Hypermobile Hand: More Than A Strength Problem.
Can children with hypermobility improve their sensory processing and thereby improve the quality of their movements in daily life? Absolutely.
Because sensory processing is a complex skill, addressing each component of functional performance will give the hypermobile child more skills. Building muscular strength within a safe range of joint movement is only one aspect of treatment. If your child is experiencing difficulty in music lessons or when playing sports, please read Should Your Hypermobile Child Play Sports? and Hypermobility and Music Lessons: How to Reduce the Pain of Playing for some useful ways to think about what you say to your child. Positioning a child to give them more sensory feedback while in action is essential. Increasing overall sensory processing by using other sensory input modalities is often ignored but very helpful. And don’t forget joint protection. They have to last as long as possible. Read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies to understand more about this topic.
I’ll bet that you didn’t think of toileting as a proprioceptive issue. When thinking about toileting the hypermobile child, the biggest problem is often an interoceptive issue; the kind of proprioception that involves internal organs. This can make it difficult for hypermobile kids to feel when they need to “go” in time to get to the bathroom, but it can also create retention. The urge isn’t very powerful for them. Read For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up and Teach Kids With EDS Or Low Tone: Don’t Hold It In!. Problems in childhood can lead to issues as a teen and adult. Read Can You Prevent Pelvic Floor Issues in Your Hypermobile Child? to learn more about how to get in front of a very common problem.
And of course, you might want a book that will help you with toilet training.
I wrote one for you!!
The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!
I believe that vestibular input is one of the most powerful but rarely used modalities that can improve the sensory-motor performance of hypermobile children. They don’t have to demonstrate vestibular processing deficits to benefit from a vestibular program. The lack of effective sensory processing due to poor proprioceptive registration and discrimination creates problems with balance, and targeted vestibular input is designed to fine-tune the brain’s balance center. You know where you are in space. Proprioception is not the only sense that helps you feel your body’s position! I could link you to scholarly articles on this concept, but you would fall asleep before finishing them. Trust me, vestibular input can make a difference. This program can be done without stressing fragile joints, which is often a limitation for the programs that focus too much on muscular strengthening and stabilization activities.
My favorite sensory processing strategy for hypermobile kids? The use of rhythmic music during movement.
Therapeutic music programs that use the powerful effects of sound on the brain are effective treatments for hypermobile children. Using sound to improve vestibular processing increases the quality and the speed of response to a loss of balance. Muscle tone increases in children while they are listening through stimulation of midbrain centers, and this combo of improved tone and improved vestibular processing helps children improve their safety while moving and even while sitting still. For all of you with kids who fall off chairs while doing nothing, you know what I mean! I have been trained in the use of Therapeutic Listening through Vital Sounds, and I really like to ease of using Quickshifts. These short pieces of music that entrains both sides of the brain for activation and attention can really make a change in hypermobile kids. There are other programs that work well too. I prefer Vital Links’ Quickshifts for greater options and ease of use in a daily schedule Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation. You download their free app and buy the music for your phone! The most significant benefit to adding a listening program to a home program for any child or adult is that there is no stress on connective tissue, even for kids that are in a lot of pain and have very limited mobility. For kids that have POTS as well as hypermobility, this can be a real advantage. The middle ear is connected intimately to the vagus nerve, which impacts the autonomic nervous system. Treatment of the vestibular system can directly improve the ability of the autonomic nervous system, without the risks associated with many activities.
Another technique to enhance sensory processing is the Wilbarger Protocol. Although not created for children with hypermobility, I believe that it can be altered to address poor proprioceptive discrimination in specific conditions such as EDS. Read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for a look at how I adapt the protocol with safety in mind.
Kineseotape can be helpful to provide some of the missing proprioceptive information. When your child has a connective tissue disorder, or is under the age of 3, skin issues complicate taping. Read Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders? for some suggestions to make this treatment more effective and less risky.
It is difficult to explain to insurers and sometimes even neurologists ( don’t get me started on how hard it is for orthopedists to follow this), but if you understand the complex processes that support sensory processing, you will be changing the background music in your clinic or your home in order to capitalize on this effect! I recommend the Vital Links Therapeutic Listening programs for their ease of use and child-friendly music.
Children with hypermobility can benefit from occupational therapy sessions that provide more than a pencil grip and a seat cushion. All it takes is an appreciation for the sensory effects of hypermobility on function.
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The JointSmart Child: Living and Thriving with Hypermobility Volume Two: The School Years is my newest book, filled with even more information for kids ages 6-12. There are strategies to help them write and play sports with less risk of injury, plus methods to communicate with teachers and doctors to get the services your child needs. Learn how to pick the best chairs, bikes, even the right clothes to make your child safer and more independent. Read more about it here: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook! It is available on Amazon as apaperback as well as a read-only download, and as a printable e-book on Your Therapy Source!
Does your hypermobile child also have toileting issues?
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The Practical Guide is available on my website, tranquil babies as an e-book, and on Amazon as a paperback and an e-book. It is also available as a printable e-book on your therapy source, a great place for therapists and parents to find exercise programs and activities for children. Read more about it, and hear what parents have to say about this unique book:The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!
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Thanks so much, Sarah! My hope is that parents and other therapists expand their understanding of this problem, and perhaps see how OT can address these issues.
Thank you so much for your dedication to this syndrome. I am mom to a 16-year-old daughter who could have been your primary inspiration for you article. We see a geneticist and an endocrinologist very soon. Who else do you suggest?
Thanks so much for writing! I think that occupational and physical therapists have so much to offer hypermobile kids. Give them my post on Heritable Disorders of Connective Tissue. Physiatrists can be helpful for orthotics. Your public school may be willing to provide therapy or accommodations such as a second set of books or lockers on multiple floors. Again, thanks for reading!