Tag Archives: hypotonia

The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

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My first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, was a wonderful experience to write and share.  The number of daily hits on one of my most popular blog posts  Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children helped me figure out what my next e-book topic should be.

Hypermobility is a symptom that affects almost every aspect of a family’s life.  Unlike autism or cerebral palsy, online resources for parents are so limited and generic that it was obvious that what was needed was solid practical information using everyday language.  Being empowered starts with knowledge and confidence.

The result?  My new e-book:  The JointSmart Child:  Living and Thriving With Hypermobility.  Volume One:  The Early Years.

What makes this book unique?

  • This manual explains how and why joint instability creates challenges in the simplest tasks of everyday life.
  • The sensory and behavioral consequences of hypermobility aren’t ignored; they are fully examined, and strategies to manage them are discussed in detail.
  • Busy parents can quickly spot the chapter that answers their questions by reading the short summaries at the beginning and end of each chapter.
  • This book emphasizes practical solutions over theories and medical jargon.
  • Parents learn how to create greater safety at home and in the community.
  • The appendices are forms that parents can use to improve communication with babysitters, family, teachers and doctors.

Who should read this book?

  1. Parents of hypermobile children ages 0-6, or children functioning in this developmental range.
  2. Therapists looking for new ideas for treatment or home programs.
  3. New therapists, or therapists who are entering pediatrics from another area of practice.
  4. Special educators, and educators that have hypermobile children mainstreamed into their classroom.

Looking for a preview?  Here is a sample from Chapter Three:  Positioning and Seating:

Some Basic Principles of Positioning:

Therapists learn the basics of positioning in school, and take advanced certification courses to be able to evaluate and prescribe equipment for their clients.  Parents can learn the basics too, and I feel strongly that it is essential to impart at least some of this information to every caregiver I meet.  A child’s therapists can help parents learn to use the equipment they have and help them select new equipment for their home.  The following principle are the easiest and most important principles of positioning for parents to learn:

  • The simplest rule I teach is “If it looks bad, it probably IS bad.”  Even without knowing the principles of positioning, or knowing what to do to fix things, parents can see that their child looks awkward or unsteady.  Once they recognize that their child isn’t in a stable or aligned position, they can try to improve the situation.  If they don’t know what to do, they can ask their child’s therapist for their professional advice.
  • The visual target is to achieve symmetrical alignment: a position in which a straight line is drawn through the center of a child”s face, down thorough the center of their chest and through the center of their pelvis.  Another visual target is to see that the natural curves of the spine (based on age) are supported.  Children will move out of alignment of course, but they should start form this symmetrical position.  Good movements occurs around this centered position.
  • Good positioning allows a child a balance of support and mobility.  Adults need to provide enough support, but also want to allow as much independent movement as possible.
  • The beginning of positioning is to achieve a stable pelvis.  Without a stable pelvis, stability at the feet, shoulders and head will be more difficult to achieve.  This can be accomplished by a combination of a waist or seatbelt, a cushion, and placing a child’s feet flat on a stable surface.
  • Anticipate the effects of activity and fatigue on positioning.  A child’s posture will shift as they move around in a chair, and this will make it harder for them to maintain a stable position.
  • Once a child is positioned as well as possible, monitor and adjust their position as needed.  Children aren’t crockpots; it isn’t possible to “set it and forget it.”  A child that is leaning too far to the side or too far forward, or whose hips have slid forward toward the front of the seat, isn’t necessarily tired.  They may simple need repositioning.
  • Equipment needs can change over time, even if a child is in a therapeutic seating system.  Children row physically and develop new skills that create new positioning needs.  If a child is unable to achieve a reasonable level of postural stability, they may need adjustments or new equipment.  This isn’t a failure; positioning hypermobile children is a fluid experience.

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years is now available on Amazon.com

And now a click-through and printable download is available on Your Therapy Source!  

For the week of 10/26/19, it is on sale, and when bought as a bundle with The Practical Guide to Toilet Training Your Child With Low Muscle Tone, it is a great deal and a complete resource for the early years!

Already bought the book?  Please share your comments and suggestions for the next two books!  Volume Two will address the challenges of raising the school-aged child, and Volume Three focuses on the tween, teen, and young adult with hypermobility!

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Have a Child With Low Tone or a Hypermobile Baby? Pay More Attention to How You Pick Your Little One Up

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Carrying and holding kids is such a natural thing to do.  But when your child has hypermobility due to low muscle tone, joint issues or a connective tissue disorder, how you accomplish these simple tasks makes a difference.  Your actions can do more than get them from one position or location to another: they can build a child’s skills, or they can increase the risk of damage by creating excessive flexibility or even accidentally injure a child’s joints.

How could something so simple be both a problem as well as an opportunity?  Because hypermobility creates two issues that have to be addressed:  Less strength and stability at vulnerable joints, and less sensory feedback regarding pain and position sense in your child.  The ligaments, tendons, muscles and joint capsule at every hypermobile joint are more likely to be damaged when excessive force is placed on them.

Knowing how much force is too much isn’t easy without some instruction from a skilled therapist.  Depending on your child to react quickly and accurately to accidental stretch or pressure by crying or pulling away isn’t a good idea.  Their excessive flexibility reduces firing of receptors deep within all of these tissues in response to excessive force.  You may have looked at your child’s shoulders or ankles and think “That looks uncomfortable.  Why isn’t she fussing?”  This is the reason.  It means that you will have to be altering your actions to reduce the risk of harm.

As I mentioned earlier, this is also an opportunity.  It is an opportunity to teach your child about safe movement and positioning, right from the start.  Even the youngest child will pick up on your emphasis on alignment, control and safety.  They are always listening and learning from you every day, so incorporate effective movement into your handling and help your child build awareness and independence today!

Here are some strategies for you and your child:

  1. Always spread the force of your grasp over their body, and place your hands on the most stable locations, not the most flexible.  Lift a child through their trunk, not by holding their arms.  If they cannot steady their head, support it while you lift.  If you feel those little bones in their wrists and ankles moving under your grasp, support those joints instead of pulling on them.  Not sure how to do this correctly?  Ask your therapist for some instruction.
  2. Do not depend on a child’s comfort level to tell you how far a joint should stretch.   Think about typical joint movement instead.   If their hips spread very wide when you place them on your hip, think about holding them facing forward, with their knees in line with their hips, not pressed together.
  3. Give them time to move with you.  Those over-stretched muscles are at a mechanical disadvantage for contraction.  This means that when you tell a child to sit up, you have to give them time to do so before you scoop them up.  They aren’t  being defiant or lazy (I have not, in fact, ever met a lazy baby!).  This is a neuromuscular issue.
  4. Discourage unsafe movements.  Some children find that overstretching their joints gives them more sensory feedback.  It feels good to them.  This is not OK.  You will not be able to stop them every time, but they will eventually learn that their is a right way and a wrong way to move.  Knowing why isn’t necessary.  Yet.  Teach them to respect joint movement and use things like graded joint compression and vibration (your occupational therapist should be able to help you with this) to give them the sensory feedback they want.

Still concerned about safety?  Read Teaching Safety Awareness To Special Needs Toddlers  and  Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way to learn more methods to build independence without injury.

 

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Hypermobile Kids, Sleep, And The Hidden Problem With Blankets

 

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Everyone knows that sleep is important.  Research in sleep science (yes, this is a thing) tells us that our brains are working to digest the day’s learning, the immune system is active during sleep, and our bodies are repairing and renewing tissues and organs while we slumber.  As much as we need sleep, kids need it more.  They are building the brains and bodies they will carry into their future.  Children need good quality sleep as much as they need healthy food.

Helping children to sleep well is usually a combination of creating good and consistent bedtime routines, giving them a full day of physical action and warm social interaction, and developing a healthy sleep environment.  This means providing a sleep-positive environment and removing any barriers to sleeping well.  But giving kids the chance to get a good night’s sleep can be harder when a child has hypermobility.

Some of the challenges to sleep for hypermobile kids are sensory-based, some are related to activity during the day, and some are orthopedic.  Here is a list of things that make sleep more challenging for these kids:

  • Children with limited proprioception and kinesthesia due to low tone or excessive joint mobility can have difficulty shifting down into a quiet state for sleep.  They spend their day seeking sensory input;  not moving reduces the sensory information that makes them feel calm and organized.  Being still is a bit similar to being in a sensory deprivation tank, and it’s not always calming.  To understand more about the sensory concerns of hypermobility, take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children.
  • Some hypermobile kids have joint or muscle pain that keeps them up or wakes them up in the middle of the night.  Pain also makes kids more restless sleepers.  Restless sleepers thrash around a bit under the covers, becoming trapped in multiple layers of bed linens, or they can fall asleep in awkward positions that result in pain.
  • Children that are sedentary during the day for any reason (preference for tablet or video play, fatigue, pain, etc) may not be physically tired enough at night.  They may also be staying up too late at night.  Good sleep hygiene includes enough daytime activity combined with a conscious wind-down hours before bedtime occurs.
  • Some children with generalized low tone or joint hypermobility (especially with a connective tissue disorder) have issues with the partial collapse of their airway during sleep.  They snore or gasp in their sleep, and appear exhausted even after a full night’s sleep.  This is a serious issue.  Sleep apnea should be evaluated and addressed by a professional.
  • Hypermobile kids can get arms and legs caught in their bedclothes or between crib slats and mattresses.  Any layer can be a potential problem, from the sheet to the decorative afghan that Granny sent for his birthday.  For more information on hypermobility and safety, read Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing
  • Limbs can slide off the mattress during deep sleep and create strain on ligaments and tendons.   You and I depend on our brain to perceive an awkward position and take corrective action by waking us slightly.  The same child who “w” sits and slides off a chair without noticing is not going to wake up when her arm is hanging off the bed during sleep, even though the tissues are stretching beyond their typical range of motion.
  • Waking up to go to the bathroom or having to clean up a nighttime accident ruins sleep.  It isn’t uncommon to have older kids wear protective garments well past 5 at night, and some children need to practice holding in their urine to expand the bladder’s ability to hold it all night long.  This is something to discuss with your child’s urologist or pediatrician, since “holding it in” can be it’s own problem.  Read Teach Kids With EDS Or Low Tone: Don’t Hold It In! to learn more about the pitfalls of too much “holding”.

Here are some simple strategies that may improve your child’s sleep:

  • Try a duvet or a flannel sheet set to minimize the number of layers of bedclothes.
  • Use a rashguard suit instead of pajamas.  I am particularly fond of the zip-front style so that less force is needed to get arms in and out while dressing.  You can peel it off more easily.  The lycra creates sensory feedback that can support body awareness while keeping them cozy.  An all-in-one suit also gives a bit of support so that limbs don’t easily overstretch.  A little bit of proprioceptive input in a breathable fabric that can also generate a bit of neutral warmth (from body heat) to keep tissues from getting too stiff.
  • Avoid footie sleepers that are too short.  Too-small footie sleepers create compressive forces on joints and could even encourage spinal torque.  Hypermobile kids will be the last ones to complain since they often don’t feel discomfort right away.  My preference is not to use these sleepers at all with hypermobile kids or kids with low tone.  See the next suggestion for another reason why I feel this way.
  • Make them take off those footie sleepers when they wake up and walk around.  As fabric twists and children stand/walk on the fabric, not the soles, it creates a safety risk underfoot.  Less sensory feedback and slippery soles!!  Get them dressed once they wake up.
  • Address sleep apnea, lack of daytime activity, and toilet training/scheduling rather than waiting for things to improve.  Not all young children achieve night time dryness on pace with other children, but ignoring the impact isn’t going to help things.
  • Carefully consider the safety issues before you try a weighted blanket.  Originally sold for kids on the autistic spectrum and for kids with sensory processing disorders without muscular or orthopedic issues, these blankets have become popular with other groups.  The biggest concern for hypermobile kids is that placing weight (meaning force) on an unstable joint over time without conscious awareness or adult monitoring is a safety issue.  It is possible to create permanent ligament injury or even subluxation of a joint with weights, depending on a limb’s position, the length of time weight is applied, and the amount of force placed on a joint.  Talk the idea of a weighted blanket over with your OTR or PT before you order one of these blankets.
  • Consider aromatherapy, gentle massage, white noise machines, and other gentler and less invasive sleep strategies to help your child sleep well.  Consider techniques like gentle joint compression and/or deep pressure brushing, but ask your therapists how to adapt it for your child’s specific needs  Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?.  For kids who sleep well but wake up stiff, learn how to use gentle massage and possibly heat to help them get going.  Do not ignore pain at bedtime, or complaints of pain on awakening.  These are important clues that you need to address.   Ask your occupational therapist or your pediatrician for ideas to adapt your bedtime routine (your OT)  or your pain plan ( your MD) to handle nighttime pain.
  • Try K-Taping or Hip Helpers for stability.  Kineseotape stays on for days and gives joint support and sensory input while your child sleeps.  Hip Helpers are snug lycra bike shorts that limit extreme hip abduction for the littlest kids when their legs rotate out to the sides excessively.  They gently help your child align hip joints correctly.  As with weighted blankets, I strongly recommend consulting with your therapists to learn about how to use both of these strategies safely.  When used incorrectly, both can create more problems for your child.  Simply put, any strategy that could help could also be misused and create harm.

Need more information about managing hypermobility in children?  Take a look at Should Your Hypermobile Child Play Sports? , Teaching Safety Awareness To Special Needs Toddlers and Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior

 

Announcing my new book on pediatric hypermobility!

There is now an e-book just for parents of hypermobile kids ages 0-5!  The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is my newest e-book.  It is a practical manual for parents and therapists.  Learn more about how hypermobility affects sensory and behavioral development as well as motor skills, and how to pick the right equipment to help a child thrive!  There are ideas for every ADL skill and even strategies to talk with your family and doctor about your child’s needs.  Read more about this book at The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

You can buy this unique new book as a clickable and printable download at Your Therapy Source or as a read-only download at Amazon.com

Looking for more personal assistance in addressing bedtime issues?

Visit my website and purchase a consultation session to ask questions, get resources, and even get help to make a sleep plan that works!

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A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair

 

Therapists often recommend these well-designed seats for kids that need solid foot support, but even the best hip and chest strapping doesn’t always mean that a child is actively using their feet for postural control.

As a young therapist, I used tape, foam, and towel rolls everywhere, as if I was creating a modern sculpture.  For the most part, all I got for my effort was frustration.  Food and force tend to make short work of the most ingenious wedges and supports on a chair used for feeding.  Then I got smarter and decided to make this a lot easier on everyone.

I wanted to share my easiest strategy for helping children place their feet on a foot plate and keep them there:  shoes!

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The little guy in the “before” photo has generalized low tone and hypermobility.  His pelvis is reasonably stable using the existing straps on the chair, and he is able to reach forward to finger-feed, partially activating his trunk and hip musculature.  But those feet just tapped away on the footplate, and his legs remained extended at the knee through most of the meal.  He is too little to respond to any verbal prompts for posture, but not completely addicted to gaining sensory input though his feet.  He is there for the food, and the foot movements were his way of gaining sensory input and entertaining himself!

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Non-skid soles, and totally stylish, too!

Just putting on his tiny boat shoes gives him some “grip” on the foot plate, and he stayed in this position for the rest of the meal with our repositioning his body at all!  He still has to develop some hip control so his knees don’t move laterally as he reaches forward.  Using shoes with non-skid soles is an easy hack to help him get some distal stability without constantly touching and repositioning him.  Kids that get a lot of therapy and need almost total help for toileting and dressing really start to hate all our manhandling after a while.

If you still get too much sliding around, my first thought is to check the height of the footplate.  If your child grew a bit, the footplate may need to be lowered.  Or you could try Dycem The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem.  This non-skid matting is easy to clean and is super-grippy.  It works as a seat mat as well.  If your child’s hips are stable, their feet can be more effective in supporting their posture.  You can buy it without being a therapist; it is available on Amazon!

Need another chair for play?  Read The Cube Chair: Your Special Needs Toddler’s New Favorite Seat!

Hope this gives parents and therapists an idea that requires very little effort and can  deliver immediate results!

Does your child W-sit?  Are you wondering why it is discouraged by your therapists and what to do about it…today?  Read Three Ways To Reduce W-Sitting (And Why It Matters)!

Looking for more information on managing hypermobility in young children?

I wrote an e-book just for you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is my newest e-book, filled with practical strategies to improve your child’s safety and independence every day.  I provide methods to pick out the right high chair, the best way to teach utensil use and dressing, and how to make your home safer for your child.  There are chapters on building your communication skills so that you can get the most support from your family, your babysitter or nanny, even from your child’s doctors!  There are forms that you can fill out to provide caregivers with the essential information they need to help your child, and forms that help you strategize your goals for school meetings and doctor’s appointments.

You can find this unique e-book as a printable and click-able download at Your Therapy Source  or as a read-only download at Amazon

 

Wondering how you are going to deal with potty training?  

Check out my e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone.  There is so little useful advice out there for parents of children with hypotonia!  My book as checklists and specific strategies for pre-training, choosing equipment such as seat inserts, and covers the sensory and social/emotional consequences of low tone as it relates to learning this important life skill.

My book is available on my website tranquil babies, at  Amazon and on Your Therapy Source, a great resource for pediatric therapy materials. 

Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior

 

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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.  We should be cautious with labels when two situations occur:  very young ages and multiple diagnoses that are determined largely by clinical observation, not testing.  Seeing ADHD in a child with hypermobility is one of those situations.

Hypermobility without functional 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.

Looking for more practical information about raising your hypermobile child?

I wrote a new book for you!  The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is your guide to making life easier.

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.

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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.

Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children

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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 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 that your pediatrician understands why your child can’t grasp a pencil but can squeeze the @@#$% out of Play-Doh, good luck.  Who will understand you?  Your OT.

Most of the hard research into proprioception and hypermobility has been done by PTs and 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.

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 gym or playing sports, please read Should Your Hypermobile Child Play Sports? 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.  To learn more about how to help your child handle hypermobility, check out   Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and Hypermobile Kids, Sleep, And The Hidden Problem With Blankets.  

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!.  And of course, you might want an e- book that will help you with toilet training.  I wrote it for youThe 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.  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 have recently been trained in the use of 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.  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.

Looking for a manual that empowers you and your young hypermobile child?

I wrote the book for you!  The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is my new e-book, packed with strategies that make life easier and build a child’s skills!  It is available as a read-only download on Amazon and as a printable and clickable download at Your Therapy Source    YTS has it on sale for the week of 10/26/19.

Read how my new e-book can help you today:  Parents of Young Hypermobile Children (and Their Therapists) Finally Get Their Empowerment Manual!

Does your hypermobile child also have toileting issues?  My e-book, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, could help you make progress today!  

The Practical Guide is available on my website, tranquil babies and on Amazon as well as at 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 e-book:The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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