Tag Archives: EDS

Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

 

The Joint Smart Child.inddThe JointSmart Child series started off in 2019 with Volume One:  The Early Years.  It is finally time for the school-age child to have their needs addressed!

Volume Two:  The School Years is available now on Amazon as an e-book, filled with information to make life at home and at school easier and safer.  This book is equally at home on a parent’s or a pediatric therapist’s shelf.   Filled with clear explanations for the daily struggles hypermobile children encounter, it answers the need for a practical reference guide for daily living.

Section I reviews the basics:  understanding the many ways that hypermobility can affect motor, sensory and social/emotional development.  General principles for positioning and safety are presented in easy-to-follow language.

Section II addresses daily living skills such as dressing, bathing and mealtime.  School-age kids may not be fully independent in these areas, and they need targeted strategies to improve their skills while boosting their confidence.

Section III looks at school and recreational activities.  It covers handwriting and keyboarding, playing sports and playing musical instruments with less fatigue, less pain, and more control.  When parents and therapists know how to select the best equipment and use optimal ergonomics and safety guidelines, kids with hypermobility really can thrive!

Section IV reviews the communication skills in Volume One, and then expands them to address the more complex relationships within and outside the family.  Older children can have more complex medical needs such as pain management, and knowing how to communicate with medical professionals empowers parents.

The extensive appendix provides informational forms for parents to use with babysitters and teachers, and checklists for chairs and sports equipment such as bikes.  There is a checklist parents can use during IEP meetings to ensure that their child’s goals include issues such as optimal positioning, access, and endurance in school.  Therapists can use the same materials as part of their home program or in professional presentations to parent groups.  There are even simple recipes to use cooking as a fun activity that develops sensory and motor skills!

I believe that this e-book has so much to offer parents and therapists that have been looking for practical information, but find they have to search around the internet only to rely on other parents for guidance instead of health care professionals.  This is the book that answers so many of their questions and empowers children to reach their highest potential!

for more information on how to help your hypermobile child, read Need a Desk Chair for Your Hypermobile School-Age Child? Check out the Giantex Chair and Should Hypermobile Kids Sit On Therapy Balls For Schoolwork? plus Should Hypermobile Kids Use Backpacks?

ahmed-saffu-307321

Hypermobility and Music Lessons: How to Reduce the Pain of Playing

 

kelly-sikkema-jrFNMM6K0VI-unsplash.jpgMost kids want to learn how to play an instrument in grade school.  Most parents encourage some form of musical training for the benefits of musical training: social, coordination, attention and focus, even the suggested connection between math skills and musical ability.  Hypermobile kids can struggle with the physical demands of playing an instrument sooner and more severely than a typically developing child.

There are ways to make it easier and less painful, right from the start.

  • Steer them into the right instrument for their physical abilities.  Heavy instruments are a questionable choice for kids that have back and shoulder issues, as they will be moving their instrument around a lot.  Children with very hypermobile wrists could find the positions for violin or guitar much more challenging than the positions for piano or clarinet.  There will still be a lot of fingering, but it occurs in a different plane of movement.
  • Understand that as hypermobility changes, so may the type of instrument that best fits your child.  This is a tough thing for kids to accept, but if they are experiencing repeated strains and injuries or an increasing amount of pain, they may have to switch to an instrument that is less risky.  Remember:  hypermobility syndromes don’t disappear, and most hypermobile children will not become professional musicians.  This isn’t life-or-death, no matter what.  Injuries that affect the ability to attend school and eventually affect working…that is something to avoid.
  • Positioning matters.  Just as with sitting at a desk or a table, hypermobile kids need to use the best possible postural control with the least amount of effort.  Children playing the piano may need a chair with low back support rather than a piano bench.  Seats may need to have cushions that give more support and seats should definitely provide solid foot placement on the floor at all times.  Some kids may need the support of a brace or braces.  Back, shoulder, wrist, and even finger splints aren’t slowing them down; they are supporting performance.  The biggest problem will be resistance from the artist.  Children rarely want to wear these devices, and if they aren’t well designed and fitted, you will hear about it.  Ask their OT or PT for direct assistance or find one that can do a consultation.  And don’t wait until an injury happens.  Get in front of this one.
  • Musical skills require practice, but hypermobile kids may need to break up their practice or do targeted practice to shorten the total amount of time spent and reduce the physical strain.  Targeted practice requires that their instructor knows which types of practice are the most likely to build skills, rather than just adding minutes to a practice session.  Breaks are important, and most kids don’t have the ability to know when and how to take them.  They need to be taught, and the little ones need to be supervised on breaks.

 

Looking for more information on raising a child with hypermobility?

My next e-book, The JointSmart Child:  Living and Thriving With Hypermobility  Volume Two:  The School Years is coming out in March 2020!  It will have more information about kids 6-12, including sports and the hypermobile child, improving communication with your child’s teachers and coaches, and how to address handwriting and keyboarding problems.  It will have more forms and checklists than the first book, but still cover all the self-care issues like toileting and how to make your home safer for your child.

Look for it on Amazon.com and YourTherapySource.com soon!

 

clark-young-tq7RtEvezSY-unsplash.jpg

 

Is Benign Joint Hypermobility Syndrome (BJHS) All That Benign?

 

lubomirkin-XKpPsuuGE_Q-unsplash

Throwing the bathwater out and keeping the baby

Many of the children I treat every year have some degree of hypermobility.  Some of them arrive on my caseload with diagnoses such as Prader-Willi syndrome or Down syndrome.  Their low muscle tone is understandable, and their hypermobility has been easily observable since birth.  Some of them are almost certainly going to be diagnosed in the future with hypermobile Ehlers-Danlos syndrome (hEDS).

There are always a few children that have been given the BJHS diagnosis without any identified genetic disorder.  Most of them have issues with delayed gross and fine motor development.  Many of them are already wearing orthotics.  Many of them struggle to communicate, demonstrating a level of instability and difficulty controlling their trunk, neck and mouth.  Few of them are complaining of pain, but most have low endurance, poor stability in dynamic positions, and use compensatory patterns to move.

So is this all that benign?  I don’t think so.

 These kids are at huge risk for cumulative and progressive joint, ligament, and muscle issues.  They are also at risk for social and emotional issues that arise from their inability to keep up with their peers and the difficulty of fulfilling the expectations of school, friends and family, as well as struggling to handle their own desire to move and grow while fighting hypermobility.  Almost all of the children I have treated with BJHS have average to above average intelligence and display sensory-based issues; sensory seeking, sensory aversion or sensory modulation.

Since therapists don’t provide a diagnosis, and doctors don’t provide most of the treatment these kids need, it appears to me that the only reason a doctor would use the word “benign” is that there is no disease process and there isn’t anything much that the standard ammunition doctors use (surgery and medication) can do for these kids.  It is easier than saying “I don’t have anything to offer your child except to refer to therapists and monitor until a problem that I CAN treat comes up”.

If your child has been given the diagnosis of BHJS, read more on this site about the effects of hypermobility, such as How To Correctly Reposition Your Child’s Legs When They “W-Sit” and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.  There are a number of additional or alternative diagnoses that these kids eventually receive, including EDS.  If you are a parent, learn as much as you can about related diagnoses and discuss these with your therapists and doctors.  But don’t assume that what your child is experiencing is benign.

Looking for more information on raising a hypermobile child?

I wrote two e-books for you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years and Volume Two:  The School Years are my newest e-books.  Volume One explains how to navigate all the self-care challenges such as selecting high chairs, booster seats, clothes and even how to make your home safer while allowing your child more independence.  Parents become empowered, not overwhelmed.

Volume Two goes deep into school skills like handwriting and mobility in school, and into the skills needed to succeed in sports, music lessons, and also how to build more solid relationships within and outside the family  .  Both books build a parent’s ability to communicate with teachers, therapists, their larger family, and even doctors!  Read more about it here: The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

These unique books are available as a read-only downloads on Amazon or as click-through and printable downloads at Your Therapy Source.  YTS is also bundling both e-books together for a great deal, or bundling Volume One together with The Practical Guide to Toilet Training Your Child With Low Muscle Tone.   Parents and therapists alike will learn how to manage hypermobility with ease and confidence!

francois-verbeeck-A-nkh5qGYv8-unsplash

 

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

 

johannes-plenio-278099

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.  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!

mike-wilson-277159

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.