Tag Archives: hypermobility

A Fun Way to Help Kids With Low Tone Stand Up Straight: Stomp-Stomp!

sven-brandsma-gn-I07tTixw-unsplashKids with hypermobility or low tone are often found standing in the most dysfunctional of positions.  Toes pointing in, feet rolled in or out, feet on top of each other: take your pick, because these kids will alternate between these wobbly choices and more!  Read How To Improve Posture In Children With Low Muscle Tone… Without a Fight! and How To Correctly Reposition Your Child’s Legs When They “W-Sit” for some other ideas.  But if you want a quick idea that works to help a child stand up with better control and stability, read on.

Telling a child to “fix your feet” often makes no sense to them, or gets ignored.  Passively repositioning their feet doesn’t teach them anything, and can annoy children who feel that they are being manhandled.

What Can You Do?

Tell Them To “Stomp-Stomp”!

Have the child stomp their feet. Repeat if necessary (or because they want to).   It is simple, you can demonstrate it easily, and most kids grin happily and eagerly copy you.  It is fun to stomp your feet.  It also give kids a chance to move in place, which they often need when socially distancing in a classroom.

 

Why Does It Work?

Because in order to stomp their feet, they have to bring their attention to their feet, shift their weight from one foot to the other in order to lift them up, and their feet almost always end up placed in a more aligned position after stomping.

Many of the goal boxes their PT and your OT have on their list are checked.  Kids don’t feel controlled or criticized.  They are having fun.  Sensory input happens in a fun way, not as an exercise.

Want more help with your child, or help improving treatment plans as a therapist?

I wrote three e-books for you!

The Practical Guide to Toilet Training Your Child With Low Muscle Tone, and the JointSmart Child series on hypermobility are all valuable resources for parents and therapists.  I wrote them because there is simply nothing out there that provides an explanation for why these symptoms make life so difficult for kids (and parents, and teachers, and even therapists!) and what can be done to make everyday life better.

Learn why low tone and hypermobility both create sensory processing issues, and what kinds of social and emotional issues are understood to accompany hypotonia and hypermobility.  When parents see these issues as complex rather than only about strength and stability, they start to feel more empowered and more positive.

Read more about these books, available for purchase on Amazon and Your Therapy Source,  in A Practical Guide to Helping the Hypermobile School-Age Child Succeed, and The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today! as well as The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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Toilet Training? Your Child Needs the Right Shorts!

 

In my first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, I wrote almost a full chapter just on clothing management.  If your child needs you to pull clothing on and off, they are NOT fully trained.  And if they have clothes that make it impossible for them to manage, you are holding them back from feeling like a real success.

Target has your back!

Yes, the same place you go for their swimsuits, toilet paper, and hand soap.  Target sells a cheap pair of shorts that children can easily pull down and back up again.  Their Cat and Jack line is pretty inexpensive, which is helpful when you know that you will be going through a few pair of shorts per day due to accidents.  They are soft to the touch for kids with sensory sensitivities, and they do have a drawstring waist if you have one of those kids whose shorts slide off their tush.  But remember that if you knot it, your kid won’t be able to slide their shorts off easily.  Better to buy a smaller size.

I would pair these with a T-shirt that ends close to their natural waist.  A longer top will get in the way during bathroom use.  You want to give your child every chance to have a positive experience, and peeing on your clothing by accident isn’t a positive!

Here is a link to a post on dressing skills: Low Muscle Tone and Dressing: Easy Solutions to Teach Independence

Want more help with your child?  

The Practical Guide….. is available on my website Tranquil Babies as a printable download, and on Amazon as a read-only download.  It is also available on Your Therapy Source individually and bundled with either my book on hypermobility in very young children The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today! or as a discounted super-bundle with my book on hypermobility in school-age children included A Practical Guide to Helping the Hypermobile School-Age Child Succeed

Helping Children With Low Muscle Tone Manage Summertime Heat

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I write a version of this post every summer.  Puzzled parents ask me about their child’s sometimes dramatic reactions to playing outside in the heat.  Kids are melting like popsicles, tripping and whining.  Time to explain the way low tone and heat interact to create less safety, less stability, and less cooperation.

Yup, low tone has behavioral consequences.  How to comprehend and manage it is one of the cornerstones of my first book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone.  When parents understand that low muscle tone is more than a motor issue, things start to improve.

Heat has predictable effects on muscles.  That is why people use heating pads on muscle spasms.  But when a child has low tone, heat isn’t helpful.  It makes it even harder to initiate and maintain a muscle contraction.  Ambient heat and internal body heat combine to create problems for kids.

What does a child with low muscle tone look like when they spend time in a very warm environment?

  • They fatigue more rapidly.  They could walk to the ice cream stand but want to be carried back.
  • They feel uncomfortable, but in a way that isn’t “sick”.  It is a combination of sluggish and unsteady.  The younger the child, the less they can express the difference between how they felt inside in the A/C and how they feel outside.
  • They become more stubborn, more contrary, or simply more irritable.  This can happen even if a child is typically the most even-tempered of kids.  Add humidity?  You might be in for a real rollercoaster ride.
  • They are often significantly less safe when they move.  They can have just enough of a delay in their ability to catch themselves when they fall, or fail to place their foot in the right spot climbing a stair.  They can even slide off the chair they are sitting on!

What can parents do?

  • Plan active fun for the cooler times of the day, or at least do active play in the shade.

  • Dress your child in breathable clothing, perhaps even tech clothes with breathable panels or special fabrics.

  • Dress them lightly and in light-colored clothing.

  • Make sure that they are well hydrated at all times.

  • Offer healthy popsicles and cool drinks frequently.

  • Have a cool place to bring your child, so that they can literally “chill out”.

  • Teach them about the effects of heat on low muscle tone so that they can understand and eventually act independently.

Looking for more information on helping children manage low tone?  

I wrote more posts for you to read: Is Your Child With Low Tone “Too Busy” to Make it to the Potty? ,  One Fun Way to Help Kids With Hypotonia Align Their Feet: Stomp-Stomp!  and How To Improve Posture In Children With Low Muscle Tone… Without a Fight!

Need more information?  I wrote three e-books for you!

Look on Amazon.com and Your Therapy Source.com for The Practical Guide to Toilet Training Your Child With Low Muscle Tone,  and both volumes of The JointSmart Child.  Read more about these unique (and very practical) books here:   A Practical Guide to Helping the Hypermobile School-Age Child Succeed and The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

 

Doing Preschool Camp at Home This Summer? This is the Water Table You Want!

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I just found this online after a parent asked me for recommendations for equipment.  She isn’t sending her two kids under 5 to camp this year, and needs some ideas to turn her backyard into a fun place to spend the summer.  This is the Little Tikes Magic Flower water table.

Why do I love this one?

Watch their video on Amazon and you will understand!  But before you do, here are my reasons, as an occupational therapist, for recommending this water table:

  • Multiple levels mean that children of different ages can both have fun.
  • Multiple ways to explore helps kids take turns without having to choose between “the fun thing” and the “barely OK things” on the water table.
  • The animal theme works for lots of kids.  Not everyone likes pirates.  Or even understands pirates.
  • It is big enough to have at least 2 kids playing at the same time, maybe 3.
  • They include 2 duckies (who doesn’t love duckies?), 2 frogs, 3 turtles, a fish, and three pouring choices.  I hate tables where you STILL have to go out and buy stuff to make it fun.  This table is “one-and-done”.
  •  All of my clients with low tone and hypermobility that can stand will be motivated to do so; there isn’t really any way to lean on this water table.  They can stabilize by holding an edge, but they cannot drape themselves over it.  They will be bending and reaching.  A lot.  That is a good thing.  But be mindful of the heat Helping Children With Low Muscle Tone Manage Summertime Heat
  • Kids that use a wheelchair or need to sit while playing due to mobility issues will still be able to have fun with their friends and siblings that can stand and bend.  This water table is inclusive.

I really hate sand tables.  You would think that as an OTR, I would love them.

Nope.  Sand gets everywhere.  In clothes, in body folds, everywhere.  Kids get sand in their mouth and in their eyes.  It tracks into the house unless you shower your kid outside, and maybe it will be found inside even then.  Sand is a pain in the neck.

As long as you empty your water table and hit it regularly with some soap or a diluted bleach solution to keep it clean, it is much easier on everyone to have a water table rather than a sand table.  This one is going to be a lot of fun!

Need more ideas for fun this summer?  Read The Preschool Water Arcade Game You Need This Summer If Camp is Cancelled (and maybe even if it isn’t) and Doing OT Telehealth? Start Cooking (And Baking)!

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How Therapeutic Listening Enhances Motor Skills

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My readers know that I am a huge fan of Quickshifts in treatment.  I have had some amazing successes with Quickshifts for regulation and modulation.  Their focus on combining binaural beat technology with instrumentation, rhythm, melody and tone makes these albums effective, and it eliminates the challenges of modulated music for very young or fragile kids.  But many parents (and a few therapists!) think that if a child doesn’t have severe sensory processing issues, then therapeutic listening isn’t going to be helpful.

That indicates that they don’t understand the principles and the rationale for the use of therapeutic listening.

Since every movement pattern has rhythm and sequence, it is completely logical that enhancing brain function with an emphasis on a calm-alert state with music will affect movement quality.  (This includes speech.  Speech is a highly skilled series of very small movements in a precise sequence! )

I am currently treating a toddler who experienced encephalopathy in infancy.  A virus affected the functioning of his brain.  The residual low muscle tone and praxis issues are directly improved by using Gravitational Grape in sessions.  He is safer and shows more postural activation while listening.  Endurance while standing and walking is significantly improved.

Another client with low tone has Prader-Willi syndrome.  Her movements are so much more sequenced with the Bilateral Control album.  Her ability to shift her weight while moving is significantly better during and immediately after listening.

All of us are more skilled when we are in the calm-alert (alpha brainwave) state that Qucikshifts entrain.  For people without motor or sensory issues, alpha states can help us think clearly and organize our thought and movement for higher level performance.  For children with movement control issues, it can improve their safety and stability.  They move with greater ease.  Therapy sessions are more productive, and play or school functioning is less work.

Due to COVID-19, I have been forced to do telehealth and use therapeutic listening with more children, rather than rely on equipment or complex sensory processing activities.  The silver lining is that parents are more involved in my sessions and can see what benefits this treatment is having on their children.   When social distancing retreats, I hope that therapeutic listening will be seen for the powerful treatment it most definitely can be!

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A Practical Guide to Helping the Hypermobile School-Age Child Succeed

 

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?

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How Using Dr. Karp’s Fast Food Rule Transforms Kids With Special Needs

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Yes, I said the word transform.  I know that hyperbole isn’t always appropriate when you are a therapist (we try to hedge our bets with predictions), but I am willing to go out on a limb in this instance and say that learning this single Happiest Toddler on the Block technique will make a difference with any child with special needs that functions with over a 12-15 month cognitive level.  Will it work with older children?  Absolutely.  Done right, it will also work on spouses and co-workers!

What is the Fast Food Rule?  You can read more about it here Help Your Child Develop Self-Regulation With Happiest Toddler On The Block but the simplest way to explain it is that when you have an upset person, they get to express themselves first, then the adult paraphrases the upset person’s expression with about 1/3 of the emotion that was used.  The paraphrasing is done at the level of comprehension of the upset person.  This means that someone who has a very low language level and is very upset may only hear “You say NO NO NO”.  Remember that any degree of agitation immediately lowers language comprehension IN EVERYONE.  Even you.

That’s it.  The phrase may have to be repeated a few times until the adult observes signs that the upset person’s agitation is decreasing (not necessarily over).  What are those signs?  A decrease in screaming volume or intensity, more eye contact, stillness of the body, turning to the adult rather than turning away, etc.  If the problem isn’t clear, altering the phrase is OK.  No harm done if you get it wrong; try again to state what their problem is.

ONLY WHEN THE UPSET PERSON HAS DECREASED THEIR AGITATION IS IT PERMISSIBLE TO OFFER A SOLUTION, OR EVEN CONSOLATION.

Why?  Because until the upset person REGISTERS that the adult understands the nature and the degree of stress, they will continue to protest to make their point.  It doesn’t matter if the point is pointless.  All the better.  Being understood is more important than being corrected.  Always.

Because young children’s brains are immature, their agitation may start up again after the problem is solved.  This is neurological, not psychological.  Rinse and repeat the FFR, and come out on the other side calmer.

Why does this transform the life of a special needs child?

Kids with special needs often need to be more regulated than the average child.  They can be unsteady, difficult to understand even when calm, have medical issues that get worse when they are agitated, and fatigue rapidly on a good day.  Being upset makes safety, endurance, sensitivity and sensory seeking worse.  Sometimes much worse.

If your child or your client has any of these issues (and I have yet to work with a child with special needs that doesn’t have ONE or more of them), then you need to learn the FFR today and use it consistently.

  • Kids with cerebral palsy can move with better safety awareness and expend less energy.
  • Kids with hyper mobility are also safer, less fatigued and can focus on movement quality.
  • Children with sensory processing issues are more modulated, less aversive or sensory seeking.
  • Kids with ASD do less self-stimulation and have less aggressive behaviors.

 

The biggest obstacle for me?  Fear of using Dr. Karp’s Toddler- Ese language strategy, which sounds infantile to the ears of an adult, because I thought that I sounded like an idiot in front of parents (who were paying me a lot of money to treat their child).  It turns out that not being able to calm a child makes me look much more like an idiot, and effectively getting a child calm and focused makes me look like a skilled professional.

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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.

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 so 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 as a read-only download on Amazon.com

It is available as a click-through and printable download  on Your Therapy Source!  

NEW:  Your Therapy Source is selling my new book along with The Practical Guide to Toilet Training Your Child With Low Muscle Tone as a bundle, saving you money and giving you a complete resource for the early years!

Already bought the book?  Please share your comments and suggestions for the next two books!  Volume Two is coming out in spring 2020, and 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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Pillowfort at Target: Should You Ask Your Child’s OT Before You Click “Buy”?

 

There are so many families out there that need great equipment for their sensory kids.  Pillowfort materials are on sale at Target, one of my favorite big box stores.  The items are affordable and stylish.  But are they what you really need?  In order to get the products that serve your child’s needs, you may want to think beyond color and style.  The key to good equipment is having a big picture plan.  The wrong item for the wrong kid is worse than not hitting “send”.

Some good examples are their crash pad and their chair.  If you have a sensory-seeking kid, you know what abuse your couch and bed can take.  Kids tend to dive bomb them and little by little, destroy them.  Pillowfort will sell you a nice crash pad, and they use a smiling child lying prone on one of their pads in their display on Target.com.

You might want to look at the dimensions.  In my professional experience, most of my clients are looking for way more square footage to crash into.  And when they are dysregulated, which is often, they aren’t going to be able to land squarely on such a small pad.  Therapists use pad the size of a thick full mattress in their clinics for a reason.  We are all safety, all the time.  And we know what works to keep kids from cracking their heads on the floor.

Their rocking desk chair is another nice chair that will serve a small number of kids.  It looks pretty sturdy, but the big sensory seekers can wear out hinges really easily.  A chair that rocks is a chair that can become tippy with the right (or wrong) user.  Choose this chair only if you have a child that isn’t one of THOSE kids.

There are other choices for kids that seek movement, and they aren’t chairs.  They are sensory diets, created by therapists with years of experience in evaluating and treating your child.  Your OTR can give you simple activities you can do at home that target your child’s needs.  I just taught a family  how to do a vestibular input activity through telehealth.  We can help you!  Read Sensory Stimulation is not Sensory Treatment and Halloween With Sensory Sensitive Kids: The (Sensory) Tricks of the Holiday for more information on how Good OT treatment can help your child.

Looking for information to help your hypermobile child with Down syndrome, Prader-Willi syndrome, or Ehlers-Danlos syndrome?

I wrote 2 e-books for you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years and Volume Two:  The School Years are now available on Amazon as  read-only downloads and at Your Therapy Source as printable and click-able downloads!

These books answer all the questions you want to ask about finding the right high chairs, clothes, toilet seats, bikes, desk chairs and even which crayons and pencils help your hypermobile child make faster progress.  It has checklists and forms to help you communicate with your babysitters, your child’s teachers, even forms to improve your appointments with doctors.

Chapters on communication give you practical ideas to improve your family’s understanding of hypermobility and guide you when speaking with doctors and therapists to provide you with real support that improves everyday life.  Get your book today, and start feeling more confident and empowered as a parent!

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

 

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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!

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Hypermobility Or Low Tone? Three Solutions to Mealtime Problems

 

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Many young hypermobile kids, with and without low muscle tone, struggle at mealtimes. Even after they have received skilled feeding therapy and can chew and swallow safely, they may continue to slide off their chair, spill food on the table (and on their body!) and refuse to use utensils.

It doesn’t have to be such a challenge.  In my new e-book coming out this year, I will address mealtime struggles.  But before the book is out there, I want to share three general solutions that can make self-feeding a lot easier for everyone:

  1. Teach self-feeding skills early and with optimism.  Even the youngest child can be taught that their hands must be near the bottle or cup, even when an adult is doing most of the work of holding it.  Allowing your infant to look around, play with your hair, etc. is telling them “This isn’t something you need to pay attention to.  This is my job, not yours.”  If your child has developmental delays for any reason, then I can assure you that they need to be more involved, not less.  It is going to take more effort for them to learn feeding skills, and they need your help to become interested and involved.  Right now.  That doesn’t mean you expect too much from them.  It means that you expect them to be part of the experience.  With a lot of positivity and good training from your OT or SLP, you will feel confident that you are asking for the right amount of involvement. Read Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child and Teach Utensil Grasp and Control…Without the Food! for some good strategies to get things going.
  2. Use excellent positioning.  Your child needs a balance of stability and mobility.  Too much restriction means not enough movement for reach and grasp.  Too much movement would be like eating a steak while sitting in the back seat of your car doing 90 mph.  This may mean that they need a special booster seat, but more likely it means that they need to be sitting better in whatever seat they are in.  Read Kids With Low Muscle Tone Can Sit For Dinner: A Multi-Course Strategy for more ideas on this subject.  Chairs with footplates are a big fave with therapists, but only if a child has enough stability to sit in one without sliding about and can actively use their lower legs and hips for stabilization.  Again, ask your therapist so that you know that you have the right seat for the right stage of development.
  3. Use good tableware and utensils.  If your child is well trained and well supported, but their plates are sliding and their cups and utensils slide out of their hands, you still have a problem.  Picking out the best table tools is important and can be easier than you think.  Items that increase surface texture and fill the child’s grasping hand well are easiest to hold.  Read The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem and OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues for some good sources.  Getting branded tableware can be appealing to young children, and even picking out their favorite color will improve their cooperation.  Finally, using these tools for food preparation can be very motivating.  Children over 18 months of age can get excited about tearing lettuce leaves and pouring cereal from a small plastic pitcher.  Be creative and have fun!

 

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Could Your Pediatric Client Have a Heritable Disorder of Connective Tissue?

 

vincent-van-zalinge-752646-unsplashTherapists see lots of hypermobile kids in clinics and schools.  I see hypermobile children  every week in their homes for private sessions, consultations and ongoing treatment through Early Intervention.  My estimate is that at least 25% of kids over 5 and almost 50% of the younger kids I have treated have some degree of hypermobility.  But young children are naturally more flexible than older kids, and there are other diagnoses that include hypermobility.  What would cause  a therapist to suspect a rare CTD when so many children have this one symptom?

You observe the systemic signs and symptoms that could indicate an HDCT, and you ask their parent(s) for details about their health and activities.  You will need far more information than you can get from your intake evaluation to explore the possibility of a heritable disorder of connective tissue.

Here are a few of the more common current or past indicators of a HDCT:

  • Multiple joint involvement.  Not just lax hands, but laxity at many joints, both small and large at times.
  • Skin that is either very smooth, very thin, or bruises easily, and bruises in places that are not common sites for active children.  For example, shins and dorsal forearms are commonly bruised in play.  The medial aspect of the thigh and the volar forearm, not so much.  It is not uncommon for ER staff to incorrectly suspect abuse when they see this pattern, so be aware that as a mandated reporter, you have to ask more questions before you make that call.
  • Sensory processing issues that are primarily poor proprioception, sensory seeking and perhaps poor vestibular functioning.  Children with a HDCT may have no sensory sensitivity and no modulation issues, and good multi-sensory processing.  Why good?  The more information they receive, the less the impact of poor proprioceptive input makes on performance.  With good positioning and support, their sensory issues seem to significantly disappear or are eliminated Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.
  • Lower GI issues or incontinence issues.  These kids may have more toilet training problems and more issues with digestion than your micro-preemies at ages 4 or 5.  Girls may have a history of UTIs, and both genders can take a long time to be continent all night Teach Kids With EDS Or Low Tone: Don’t Hold It In! You may hear about slow GI motility or a lot of sensitivity to foods that are not common allergens in children.
  • Dental issues such as bleeding gums or weak enamel.  Remember, if it is a CTD, then there will be problems with many kinds of tissue, not just skin or tendons.  Read Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health for more practical ideas.
  • Strabismus or amblyopia are more commonly seen in HDCT.
  • Really slow progress in therapy, even with great carryover and a solid team.
  • Recurrent injuries from low-impact activities that were well-tolerated the day before.   Micro-trauma can take a day to develop into pain, swelling or stiffness.  You  could see overuse trauma that doesn’t make sense at first, because the overuse is just regular levels of activity but for a CTD, this IS overuse.

Should you say something to a parent?  I don’t have a license to diagnose children, but I may contact their referring physician if I see many indications that a child needs more evaluation.  More directly, I can help parents manage the issues that fall within my practice area, and educate families about good joint protection, equipment choices, and body mechanics.

 If a child does have a HDCT diagnosis,  the current and future risks of certain sports and careers should be discussed with families.  As therapists, we know that early damage can contribute to significant impairment in decades to follow.  Just because a child isn’t experiencing severe pain now isn’t an indication of the safety of an activity.  Understanding the many ways to adapt and adjust to ensure maximal function and maximal preservation of function is embedded in every OT.  Adapt your treatment protocols to respect the nature of a CTD, such as in  Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?

We can make a difference for these kids and their families, but only if we know what we are really treating.

Are you a therapist looking for clinical guidance?  Visit my website tranquil babies and connect with me through a phone or video session.  With over 25 years of pediatric experience, I have probably tried all of the techniques you are considering, and treated children with the diagnoses that keep you guessing.  Make your treatment sessions more productive, and your treatment day easier, with some professional coaching today!

Are you a parent of a child with a CTD?  Or an adult with a CTD?  A coaching phone/video session may answer your questions about diagnosis and treatment, and help you craft a more successful home program.  This is not the same as a treatment session, but especially if you are getting private therapy services, you want to be an informed consumer and get targeted help from your healthcare providers.  Coaching can help you be that effective parent or patient.  Visit my website tranquil babies and get started today!

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The Best Ride-On Toy For Younger (or Petite) Toddlers

 

61-g+QMVAYL._SL1000_.jpgAs an occupational therapist, I have always found it difficult to recommend a toddler ride-on toy for younger or smaller kids with low muscle tone and hypermobility.  Most of these toys have such a wide seat that children must propel themselves with their knees rotated out and pushing forward on their toes.  Exactly the pattern of movement we DON’T want to see.

And then I saw the Fly Bike.  This little fold-up bike has a seat that is about 9.5 inches high and has a very narrow seat.  This allows a child’s feet to be aligned with their hips, facilitating the development of hip and trunk control, not substituting bending forward and back to propel the toy.

The textured seat helps grip a child’s clothing for a little extra stability, and the small handlebars mean children aren’t draping their chest over the front of the toy; they are holding onto the handlebars with their hands.  Brilliant.  The rubber wheels are kind to indoor floors, but can handle pavement easily.

Are there children that don’t fit this toy?  Absolutely.  If your child is too tall for this toy, they shouldn’t use it.  If your child cannot maintain adequate sitting balance independently on this toy, they may need more support from another style of ride-on toy, perhaps with a larger seat and a backplate.

I finally have a great ride-on toy that I can recommend for smaller kids.  An early Xmas present to me and my little clients!

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Tub Safety For Special Needs Children

Bathtime is usually a fun experience for young children.  Toys, splashing, bubbles.  But it’s not always fun for parents.  If your child has issues with sensory sensitivity, sensory seeking or hypermobility, you can feel like a one-armed paperhanger; juggling toys, washcloth and child!

One solution is to use a bath seat.  A word of common sense first:  never leave a child unattended in any type of bath seat.  Just because these devices improve stability, they don’t remove all the risks of bathing in a tub.  Young children need to be supervised at all times.  But a tub seat does help a special needs child remain sitting and stable, and that can really help parents during bathing.  Here are the positive effects of using a bath seat or tub insert:

Kids with sensory seeking or sensory sensitivity can find the expanse of the standard tub overstimulating, and in response, they may become agitated or fearful.  The youngest kids can’t tell you how this feels.  They just act up.  Using a bath seat or a tub insert can allow these children to stay in the tub long enough to be washed, and help them stay calm and relaxed.  Since bath time is usually before bedtime, that is a big plus!

For kids with instability, the bath seat or insert can prevent them from injuring themselves if they tip or lean too much.  They could even build their ability to sit up if the seat is well-chosen for their needs.  These kids need to acquire a sense of independence, and if they are given the right support, they can start to sit without an adult holding them.  They may be able to use both hands more freely, developing coordination for learning to wash themselves and confidence in their independence.

Selecting the correct equipment can be easy or challenging.  After determining what level of assistance your child needs, figure out if your child fits well in the seat you are looking at.  Some seats are made for very small children.  If your child is older or larger, keep looking until you find equipment for them.  Therapy catalogs and sites have equipment for children with significant difficulties in holding their head up or maintaining a sitting position.  These are more expensive than mass-market items, but they are often adaptable and you can remove parts as your child builds their sitting skills and safety.

Looking for more information on making your home safer for your child?  Read Should You Install a Child-Sized Potty for Your Special Needs Child? and How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child.  I am a CAPS as well as an OTR.  This is a natural progression, as occupational therapists are always thinking of safety and independence for their clients, all the way from infancy to end-of-life issues.

For more information about self-care and the special needs child, check out Kids With Low Muscle Tone Can Sit For Dinner: A Multi-Course StrategyImproving Daily Life Skills for Kids With Special Needs, and OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues.

Are you toilet training your special needs child?  Do you worry that it may never happen?  I wrote the e-book for you!  The Practical Guide To Toilet Training Your Child With Low Muscle Tone is filled with readiness tips, techniques to find the best potty seat, and techniques to make learning faster and easier for both of you!  It is available on my website tranquil babies, and on Amazon and Your Therapy Source )a terrific site for parents and therapists).  Read more about this unique guide here: The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

 

Teaching Safety Awareness To Special Needs Toddlers

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Parents anxiously wait for their special needs infants to sit up, crawl and walk.  That last skill can take extra months or years.  Everyone, and I mean everyone, uses walking as a benchmark for maturity and independence.

They shouldn’t.  A child with poor safety awareness isn’t safer when they acquire mobility skills.  Sometimes they are much less safe.  Yes, they may be able to move without your help, but they may need to be more highly monitored and given more assistance to learn how to be safe.  They are exploring their environment and their new skills that took them a long time to develop.  They have been wanting to climb on the couch for months.  Now they can.  Getting down the “safe” way isn’t as important to them, and maybe not as easy as sliding or rolling off.  Oops.

What can parents do to help their child be a safer (notice I didn’t say “safe”) ambulator, crawler, cruiser, etc?  

  1. Talk about safety before they are independent.  Will they understand what it means?  Probably not, but your tone and your insistence on how movement is done says that you value safety and you want them to do the same.  Kids learn from all of our actions.  Make this one familiar to them by being very obvious and explicit.
  2. Take your physical therapist seriously when she or he teaches you how to work on core strength and balance skills.  Yes, I still maintain that safety is more than a sensory-motor skill, but having the best possible sensory and motor skills is important.  Having good safety awareness and safety behaviors without these skills will make a child more vulnerable to falls and injuries.
  3. The same goes for sensory processing activities.  If your child cannot perceive the movement of falling, the tactile and proprioceptive change as they crawl or step on something, or tolerate multiple sensory inputs at once, they are much less safe, even with good strength and coordination.  Really.
  4. Know your child’s cognitive and social/emotional skills.  Impulsive children are less safe overall.  Children that cannot process your instructions or recall them without you are less safe.  Children that enjoy defying you more than they want to avoid falling are less safe.  If you know any of these things, you can gauge safety and react more appropriately.  You will be less frustrated and more helpful to them.
  5. Reward safe execution and do not reward unsafe behavior.   My favorite way to avoid punishment but also to send my safety message home?  Not providing eye contact or much at all in the way of conversation as I stop unsafe actions, and either removing a child from an unsafe situation or assisting them in using the safe method to execute their move.  They get no satisfaction from seeing me react strongly, and they get the message that I am not accepting anything but their best safety skills as they move.
  6. Stop a child that is moving in an unsafe way, and see if they can recall and initiate the safe choice before assisting.  You don’t want to teach them that only you will make them safe and they need someone to be safe out there. They have to learn how to assess, react and respond, and all children can build their skills.  Some need more teaching, and some need more motivation to begin to take responsibility for their safety.  Give them both.

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Three Ways To Reduce W-Sitting (And Why It Matters)

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Children who sit on the floor with their thighs rolled inward and their calves rotated out to the sides are told that they are “W-sitting”.  Parents are told to reposition their kids immediately.  There are even garments like Hip Helpers that make it nearly impossible to sit in this manner.  Some therapists get practically apoplectic when they see kids sitting this way.  Not me; I prefer to be a stealth ninja therapist: create situations in which the child wants to reposition themselves.

I get asked about W-sitting no less than 3x/week, so I though I would post some information about w-sitting, and some simple ways to address this without aggravating your child or yourself:

  1. This is not an abnormal sitting pattern.  Using it all the time, and being unable to sit with stability and comfort in other positions…that’s the real problem.  Typically-developing kids actually sit like this from time to time.  When children use this position constantly, they are telling therapists something very important about how they use their bodies.  But abnormal?  Nah.
  2. Persistent W-sitting isn’t without consequence, just because it isn’t painful to your child.  As a child sits in this position day after day, some muscles and ligaments are becoming overstretched.  This creates points of weakness and instability, on top of any hypermobility that they may already display.  Other muscles and ligaments are becoming shorter and tighter.  This makes it harder for them to have a wide variety of movements and move smoothly from position to position.  Their options for rest and activity just decreased.  Oops.  And they don’t feel uncomfortable in that position.  If you aren’t hypermobile yourself, you might not believe me.  Here is an explanation:  Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way.
  3. Sitting this way locks a child into a too-static, too-stable sitting position.  This appeals to the wobbly child, the weak child, and the fearful child, but it makes it harder for them to shift and change position.  Especially in early childhood, developing coordination is all about being able to move easily, quickly and with control.  There are better choices.
  4. A child who persistently W-sits is likely to get up and walk with an awkward gait pattern.   All that over-stretching and over-tightening isn’t going to go away once they are on their feet.  You will see the effects as they walk and run.  It is the (bad) gift that keeps on giving.

What can you do?

Well, good physical and occupational therapy can make a huge difference, but for today, start by reducing the amount of time they spend on the floor.  There are other positions that allow them to play and build motor control:

  • Encourage them to stand to play.  They can stand at a table, they can stand at the couch, they can stand on a balance disc.  Standing, even standing while gently leaning on a surface, could be helping them more than W-sitting.
  • Give them a good chair or bench to sit on.  I am a big fan of footstools for toddlers and preschoolers.  They are stable and often have non-skid surfaces that help them stay sitting.  They key is making sure their feet can be placed flat on the floor with their thighs at or close to level with the floor.  This should help them activate their trunk and hip musculature effectively.
  • Try prone.  AKA “tummy time”; it’s not just for babies.  This position stretches out tight hip flexors and helps kids build some trunk control.  To date, I haven’t met one child over 3 who wouldn’t play a short tablet game with me in this position.  And them we turn off the device and play with something else in the same position!
  • If your child still wants/ needs to sit on the floor, fix their leg position without risking damage to their hips and knees.  Read How To Correctly Reposition Your Child’s Legs When They “W-Sit” for more details.

For more strategies for hypermobile kids, take a look at  Joint Protection And Hypermobility: Investing in Your Child’s Future and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.

Looking for More Information on Hypermobility in Young Children?

I wrote an e-book for you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is my newest e-book, filled with strategies to help parents understand the complexities of hypermobility and find answers to their everyday problems.  Learning how to help a child sit for a meal, get dressed, bathe and hold a crayon isn’t intuitive. Trying to figure out how to teach your babysitter or mother-in-law how to hold and carry your hypermobile child or how to give them a bath safely?  Parenting manuals don’t cover this, and your child’s therapists might not know how to help you either.

This book gives parents the information they need to feel empowered and confident!  There are even chapters on how to improve communication with a child’s siblings and the extended family, with babysitters and teachers, and even how to speak with your doctors to get results.  My book contains many of the techniques I have learned in my 25 years as a pediatric OTR and great ideas that parents have taught ME!

This unique e-book gives parents helpful information to make everyday life better.  

It is available on Amazon as a read-only download, or on Your Therapy Source as a printable and click-able download.  Buy it today!

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Picking The Best Bikes, Scooters, Etc. For Kids With Low Tone and Hypermobility

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Welcome to the world of faster (and faster) movement!  After mastering walking and possibly running, kids are often eager to jump on a ride-on toy and get moving.  If a child has had motor delays and has had to wait to develop the strength and balance needed to use a bike, they may be a bit afraid, or they may throw caution to the wind and try it all as soon as possible!

Selecting the best equipment for kids that have low tone or hypermobility doesn’t end with picking a color or a branded character ( Thanks, Frozen, for bringing up my Disney stock in 2013 almost single-handedly!).  In order to find the right choice for your child, here are some simple guidelines that could make things both easier and safer:

  1. Fit matters. A lot.  Hypermobile children are by definition more flexible than their peers.  Their limbs stretch, a lot.  This doesn’t mean that they should be encouraged to use pedals so far away from their bodies that their legs are fully extended, or use handlebars that reach their chins.  In general, muscles have their greatest strength and joints have their greatest stability and control in mid-range.  Fit the device to the child, not the other way around. Choose equipment that fits them well now,  while they are learning, and ideally it can be adjusted as they grow.  For the youngest or smallest kids, read The Best Ride-On Toy For Younger (or Petite) Toddlers and check out this great ride-on toy!
  2. Seats, pedals and handlebars that have some texture and even some padding give your child more sensory information for control and safety.  These features provide more tactile and proprioceptive information about grip, body positions and body movements.  You may be able to find equipment with these features, or you can go the aftermarket route and do it yourself.  A quick hack would be using electrical tape for some extra texture and to secure padding.  Some equipment can handle mix-and-match additions as well.  Explore your local shops for expert advice (and shop local to support your local merchants in town!)
  3. Maintain your child’s equipment, and replace it when it no longer fits them or works well.  Although it is more affordable to receive second-hand items or pass things down through the family, hypermobile kids often find that when ball bearings or wheels wear down, the extra effort required to use a device makes it harder to have fun.  The additional effort can create fatigue, disinterest in using the equipment, or awkward/asymmetrical patterns of movement that aren’t ergonomically sound.  Repair or replace either than force your child to work harder or move poorly.

Looking for more information about low tone and hypermobility?  

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 here!

Both have useful information to make caring for your hypermobile child easier, safer, and both build their independence throughout the day.  This is essential reading for parents of children with PWS, EDS, many forms of SPD, and Down syndrome.  These books cover how to teach your family  members, babysitters and teachers the best ways to work with your child, making life easier for BOTH of you!  They teach parents and therapists how to communicate with families, professionals and community members such as coaches and educators.  There are helpful checklists and forms that make picking the right chairs, clothes, even plates and utensils that make life easier for hypermobile kids.

Understanding that hypermobility creates more than unstable joints is key. Hypermobility creates emotional, social and sensory processing issues that affect a child’s development.  When parents have knowledge, they are empowered and can act as advocates rather than react to situations.  When therapists have a solid treatment plan, they can be amazing clinicians and help a child blossom!  These books are intended to teach new clinicians and parents of hypermobile kids how to make a difference in a child’s life right away.

Pick them up as a read-only download on Amazon or as a printable and click-able download on Your Therapy Source today!

Want more posts on hypermobility?  Read The Hypermobile Hand: More Than A Strength Problem , Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.

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For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

 

chen-hu-664399-unsplashI ran across a comment piece online that recommended parents teach their hypermobile  children to “listen to your body” to pace activities in an effort to avoid fatigue, pain or injury.  My reaction was fairly strong and immediate.  The sensory-based effects of hypermobility (HM) reduce interoception (internal body awareness)  and proprioception/kinesthesia (position and movement sense, respectively).  These are the  main methods of “listening” we use to know how we are feeling and moving.  For children with HM, telling them to listen to their body’s messages is like telling them to put on their heavy boots and then go outside to see how cold the snow is! 

Relying primarily on felt senses when you have difficulty receiving adequate sensory feedback doesn’t make…..sense.  What often happens is that kids find themselves quickly out of energy, suddenly sore or tripping/falling due to fatigue, and they had very little indication of this approaching until they “hit a wall”.  They might not even see it as a problem.  Some kids are draped over the computer or stumbling around but tell you that they feel just fine.  And they aren’t lying. This is the nature of the beast.

I am all for therapy that helps kids develop greater sensory processing (as an OTR, I would have to be!), but expecting HM kids to intuitively develop finely tuned body awareness? That is simply unfair. Kids blame themselves all too easily when they struggle.  What begins as a well-meaning suggestion from a person with typical sensory processing can turn into just another frustrating experience for a child with HM.

What could really help kids learn to pace themselves to prevent extreme fatigue, an increase in pain and even injury due to overdoing things?

  1. Age-appropriate education regarding the effects of HM.  Very young children need to follow an adult’s instructions (“time to rest, darling!”), but giving older kids and teens a medical explanation of how HM contributes to fatigue, pain, injuries, etc. teaches them to think.   Understanding the common causes of their issues makes things less scary and empowers them.  If you aren’t sure how to explain why your child could have difficulty perceiving how hard they are working or whether they are sitting in an ergonomic position, read Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for some useful information.  You could ask your child’s OT or PT for help.  They should be able to give you specific examples of how your child responds to challenges and even a simple script to use in a discussion.  Explaining the “why” will help children understand how to anticipate and prepare for the effects of HM.
  2. Consider finding a pediatric occupational therapist to teach your child postural, movement and interoceptive awareness, adapt your child’s learning and living environments for maximal ease and endurance, and teach your child joint protection techniques.  Occupational therapists are often thought of as the people that hand out finger splints and pencil grips.  We are so much more useful to your child than that narrow view!  For example, I have adapted desks for optimal postural endurance and decreased muscle tension.  This has immediate effects on a child’s use of compensations like leaning their chin on their hand to look at a screen.  Read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies to understand more about what OTs can offer you.  OT isn’t just for babies or handwriting!
  3. Pacing starts with identifying priorities.  If you don’t have boundless energy, attention, strength and endurance, then you have to choose where to spend your physical “currency”.  Help your child identify what is most important to them in their day, their week, and so on.  Think about what gives them satisfaction and what they both love to do and need to do.  This type of analysis is not easy for most kids.  Even college students struggle to prioritize and plan their days and weeks.  Take it slow, but make it clear that their goals are your goals.  For many children with HM, being able to set goals and identify priorities means that they will need to bank some of their energy in a day or a week so that they are in better shape for important events.  They may divide up tasks into short components, adapt activities for ease, or toss out low-level goals in favor of really meaningful experiences.  Can this be difficult or even disappointing?  Almost certainly!  The alternative is to be stuck at an event in pain, become exhausted before a job is completed, or end up doing something that places them at higher risk for injury.
  4. Help your child identify and practice using their best strategies for generating energy, building stamina and achieving pain-free movement.  Some kids with HM need to get more rest than their peers.  Others need to be mindful of diet, use relaxation techniques, wear orthotics regularly, adapt their home or school environment, or engage in a home exercise program.  Learning stress-reduction techniques can be very empowering and helps kids think through situations calmly.    Sports can be an issue or they can be a wonderful way to build endurance and body awareness.  Read  Should Your Hypermobile Child Play Sports? for some ideas on managing pain, endurance and coordination.  Creating a plan together and discussing the wins and failures models behaviors like optimism and resourcefulness.  Children depend on adults to show them that self-pacing is a process, not an endpoint.

Take look at The Hypermobile Hand: More Than A Strength Problem and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.

Looking for a more comprehensive guide to raise your hypermobile child?

I wrote two e-books just for you!

The Joint Smart Child.inddThe Joint Smart Child.indd

The JointSmart Child series is your practical guidebook to find the best chairs, bikes, desks, and even clothing, while learning that hypermobility isn’t just physical.  The sensory processing and social/emotional consequences of loose joints are real.  Understanding how all three affect development and performance makes parents empowered at school meetings and with doctors.  My books have checklists and forms that families and therapists can use today to improve a child’s skills.

Volume One:  The Early Years addresses all the issues from birth to age 5.  I teach the best ways to carry and hold a hypermobile child, and how to teach babysitters and family  members what they need to know so that mothers have good support systems.  Picking out the right high chair, utensils, toys, and clothes will make a difference when kids are learning to sit, walk, eat and dress independently.  Read more about this book in The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

Volume Two:  The School Years looks at the unique needs of kids 6-12.  It gives parents the information they need to make things go well in the classroom, in sports, and even in music lessons.  Knowing how to help kids write and keyboard with less of a struggle means that there are fewer complaints during homework and self-esteem builds rather than erodes.  Here is an overview of all that Volume Two covers: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

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Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?

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My posts on proprioception and hypermobility have been popular lately, leading me to think that parents (and therapists) want more information on the sensory basis for their children’s struggles, and that often their treatments don’t include addressing their sensory processing issues.

The Ehles-Danlos Syndromes (yes, there are more variants than just vascular and hypermobile!) are somewhat rare connective tissue disorders that can create generalized joint hypermobility.   Kids with EDS are often diagnosed as having a coordination disorder before they get the EDS diagnosis, and their families describe them as “clumsy” or even “lazy”.  I see them as having sensory processing issues as well as neuromuscular and orthopedic issues.   Take a look at Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for more on this subject.  If you are an OT or a PT and you are thinking of using K-tape, read my post Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders? before you begin.  You may change your approach and expand your thinking about taping after you read it!

There are some caveats in using techniques from sensory integration protocols with this population.  This doesn’t mean “no”; it means think about it first.  The use of the Wilbarger Protocol is one that requires some thought before initiating with EDS kids.

The Wilbarger Protocol:

For those of you who are unfamiliar with the Wilbarger Protocol, it is a common treatment approach for children with sensory sensitivity, sensory discrimination issues and poor sensory modulation.  Created by Patricia Wilbarger, a terrifically talented OTR  who directly trained me as a young therapist, it is a neurologically-informed treatment that can be used quickly for both immediate improvement in sensory processing and it can make long-term alterations in the brain’s ability to use sensory input for movement and state control.  The Wilbarger Protocol involves skin brushing and joint compression in a carefully administered method that uses the “gate theory” of sensory processing to assist the nervous system in regulating awareness and arousal.

There have been other protocols for regulation developed over the years, and adaptations to the Wilbarger Protocol have occurred since it’s creation.  But daily and repeated use of brushing the skin and use of joint compression to deliver deep pressure input (to inhibit light touch registration and enhance proprioceptive discrimination) are the cornerstones of treatment delivery.

Adapting the Protocol for Ehlers-Danlos Syndrome

Understanding the systemic nature of EDS is important.  Often therapists are unaware of the precautions since the child doesn’t have a formal diagnosis Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue?.  Since the Wilbarger Protocol was not created to treat EDS, I am recommending that therapists and parents consider adapting it to protect the joints and skin of children with EDS while still gaining benefit from this technique:

  • Reconsider using the brush.  Although the dual-treatment of brushing and joint compression makes this technique a powerful approach, kids with EDS often have skin that is more fragile than average.  It can bruise and tear more easily, especially with the vascular or classic EDS subtypes.  Small children will be brushed repeatedly over the same skin area, increasing the risk of shear, abrasion and bruising.  Children (and adults) with EDS will have skin reactions far in excess of the amount of pressure applied.  This is related to the assumption that the connective tissue that makes up skin and blood vessels is either weaker or thinner than typical children.  My advice: go with the joint compression component alone, and see if you get a clinically valid result without the risk of skin damage.
  • Make sure that you are well-trained in the positioning and administration of joint compression.  I have taken joint mobilization training courses, as well as having dual licenses in massage therapy and occupational therapy.  Being able to feel correct joint position and alignment is absolutely key when children have loose joints, so use this technique with care.  Avoid painful joints and limit repetition to the shortest amount needed to see a clinically meaningful response.
  •  Train parents extremely well before recommending home use.  Most parents can learn this technique with the right explanation and some practice.   If a parent seems unable to perform joint compression correctly, reconsider the use of a home program.  This has only happened once in my career.  A mom was truly unable to perceive the amount of force she was using.  She admitted that this had been an issue for her since childhood, and I suspected that she had her own sensory processing issues.  We moved on to other treatment choices.  There is never a reason to stick with a treatment that causes a risk to a child or makes a parent feel like they are a failure.  Ever.  To read more about the Wilbarger Protocol, read Why Is The Wilbarger Protocol So Hard To Get Right?

The true skill of a therapist is the ability to offer the just-right challenge to each child, based on a therapist’s observations, assessment and knowledge base.  I believe that there are many kids with EDS that could benefit from the Wilbarger Protocol when it is effectively adapted to their needs.

 

Looking for more information?

I wrote 2 books to help parents and new therapists address hypermobility in  children!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years and Volume Two:  The School Years are  guides that tels you how to pick the right seating, the right clothing, the right utensils and how to adapt your home for safety without making it look like a therapy clinic!  These unique books teach parents how to help their children build independence in all the basic self-care and school skills they need.  There are chapters that explain how to communicate with babysitters, family members and even doctors.  Good communication makes parents feel empowered and confident.

They are available on Amazon as read-only downloads and on Your Therapy Source as  printable and click-able downloads.

Read more here:    A Practical Guide to Helping the Hypermobile School-Age Child Succeedand The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

 

Need more than blog posts or a book?  Visit my website tranquil babies and purchase a phone/video session to discuss your concerns and learn about what occupational therapy has to offer your child!  Are you a new therapist, or new to pediatrics?  Let me help you build your skill set and amaze your clients with a mentoring session.

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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.  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!

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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.