Category Archives: hypermobility

Parents of Young Hypermobile Children Need A Guide To Navigate Everyday Life

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

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

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

What makes this book unique?

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

Who should read this book?

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

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

Some Basic Principles of Positioning:

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

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

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

 

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

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Why Injuries to Hypermobile Joints Hurt Twice

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My new e-book, The JointSmart Child: Living and Thriving With Hypermobility, Volume I, is just about ready to launch.  One of the book’s major themes is that safety awareness is something that parents need to actively teach hypermobile young children.  Of course, physical and occupational therapists need to educate their parents first.  And they shouldn’t wait until things go off the rails to do so.

Hypermobile kids end up falling, tripping, and dropping things so often that most therapists have the “safety talk” with their parents on a regular basis.  What they don’t speak about as often are the long-term physical, emotional and social impacts of those injuries.

Yes, injuries have more than immediate physical effects on hypermobile kids.  Here is how this plays out:

  • The loss of mobility or function after an injury creates more dependency in a little person who is either striving for freedom or unsure that they want to be independent.  Needing to be carried, dressed or assisted with toileting when they were previously independent can alter a child’s motivation to the point where they may lose their enthusiasm for autonomy.  A child can decide that they would rather use the stroller than walk around the zoo or the mall.  They may avoid activities where they were injured, or fear going to therapy sessions.
  • A parent’s fear of a repeated injury can be perceived by a child as a message that the world is not a safe place, or that they aren’t capable in the world.  Instilling anxiety in a young child accidentally is all too easy.  A fearful look or a gasp may be all it takes.  Children look to adults to tell them about the world, and they don’t always parse our responses.  There is a name for fear of movement, whether it is fear of falling, pain or injury: kineseophobia.  This is rarely discussed, but the real-life impact can be significant.
  • Repeated injuries produce cumulative damage.  Even without a genetic connective tissue disorder such as Ehlers-Danlos syndrome, the ligaments, tendons, skin and joint capsules of hypermobile children don’t bounce back perfectly from repeated damage.  In fact, a cascade of problems can result.  Greaster instability in one area can create spasm and more force on another region.  Increased use of one limb can produce an overuse injury in the originally non-injured limb.  The choice to move less or restrict a child’s activity level can produce unwanted sedentary behavior such as a demand for more screen time or overeating.
  • Being seen as “clumsy” or “careless” rather than hypermobile can affect a child’s self-image long after childhood is over.  Hypermobile kids grow up, but they don’t easily forget the names they were called or how they were described by others.  With or without a diagnosis, children are aware of how other people view them.  The exasperated look on a parent’s face when a child lands on the pavement isn’t ignored even if nothing is said.

In my new book, I provide parents with a roadmap for daily life that supports healthy movement and ADL independence while weaving in safety awareness.  Hypermobility has wide-reaching affects on young children, but it doesn’t have to be one major problem after another.  Practical strategies, combined with more understanding of the condition, regardless of the diagnosis, can make life joyful and full for every child!

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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.

There are always a few children that have been given the BJHS diagnosis.  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.

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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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How To Correctly Reposition Your Child’s Legs When They “W-Sit”

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Hypermobile kids, kids with low muscle tone, and kids with sensory processing issues are champion “W-sitters”.  What’s that?  If your child sits with their thighs rotated inward, knees bent, and their feet rotated so their toes point outward, you have a W-sitter.   This sitting pattern isn’t abnormal if it is only one of many positions your child uses while playing on the floor.  It really isn’t.  But if it is the ONLY  way they like to sit, the only way they are able to sit without falling over, or the only way they are comfortable sitting on the floor, you may have a problem.

What kind of problems?

Persistent W-sitting can tighten hip and leg muscles to the point at which walking is negatively affected.  It also overstretches and discourages the development of the muscles needed for good walking and postural control.  It can loosen important hip and knee ligaments that are also essential for walking.  W-sitting inhibits active trunk muscle activation (that core thing again!).  We all know that having a weak core is a problem for good quality movement.  And finally…poor gait quality is a safety issue.  More falls, more tripping, more leaning on things and people.  Read Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing for a deeper dive into safety awareness.

There is a sensory impact as well.

What isn’t always so obvious is that having a weak core and only using a sitting position that locks the lower body into a collapsed position tells a sensory-sensitive kid that their brain is telling the truth; they are vulnerable and it is not that easy or safe to move.  This inhibits movement exploration and opportunities to build balance, strength, etc.

So….What is the best way to reposition your child’s legs?

  1. Don’t pull their feet out and around.  If your kid has issues such as hypermobility, you may be contributing to more joint problems if you place force on delicate tissue.
  2. You can demonstrate alternate sitting patterns and see if they will copy your position.  This requires the language, cognitive and motor skills to do so, and the willingness to comply.  Young children and special needs kids may not be able to follow your directions.  Some parents tell their child “Legs out” or “Fix your feet” and they slowly learn what that means.
  3. Try practicing regularly and rewarding other sitting patterns.  Praise will work for some kids but not all kids.  You know if you have a child that will take the bait.
  4. Tilt their trunk to one side, and wait for their brain to elicit a “righting reaction”; kicking the opposite leg out and forward.  Repeat on the other side.  A child with CP may not be able to overcome their spasticity to perform this, but you certainly can try it with any child.  If your child fights you on this, tip them to the side faster so that the reflexive response overs before they realize it, and use all your Happiest Toddler techniques Use The Fast Food Rule For Better Attunement With Your Child to decrease the oppositional behavior.
  5. Think of other more dynamic positions for play.  Read Three Ways To Reduce W-Sitting (And Why It Matters)

Does Your Special Needs Child Have a “Two-tude”? Its Not Just the Age; Its Frustration Minus Skills

 

patrick-fore-557736I spend a lot of my work week with toddlers, and they can be a challenge.  One minute sunny, the next screaming because their cookie broke.  Special needs toddlers can have a “tude as well, but many professionals sweep it under the rug.  They tell parents that this is normal, and that they should be grateful that their child is going through a completely normal stage of development.

Except that many parents who have already raised typically-developing kids KNOW that there is a difference with this child.  It could be the intensity of the ‘tude, or the frequency of the meltdowns, or the types of events that trigger the tantrums.  OR ALL OF THEM!  Parents know that this doesn’t feel the same, but they often shut up when they are told that it is so normal.  Perhaps their eyes and ears and memory isn’t correct.

They aren’t wrong.  Their perception that something is a bit different can be totally correct.  And the reason(s) are quite obvious to me.

Special needs kids come in an almost endless combination of needs.  Some are physical, some are communication needs, and some are cognitive or social skill needs.  Some are all of these.  Having challenges in moving, speaking, comprehending language and/or concepts or struggling to interact will create more frustration for every single day of a child’s life.  That’s the reality of disability.

The image of the placid and sweet special needs child, patiently waiting to be assisted and supported is just that: an image.  Most kids bump into frustrating barriers every day.  The toddler that has just learned to walk but can’t run, the toddler that is talking or signing but still isn’t understood by their older brother, the toddler that cannot handle a change in routines…it goes on and on.

Typical toddlers spend less time frustrated that they are unable to accomplish simple skills.  The typical 14 month-old that can’t tell you what he wants becomes the 18-month old that can say “cakker, pease” for “cracker please”.  A special needs child could be 4 years old and still struggling to explain that he wants another cracker.  That is a long time to be frustrated.  The typical 26 month-old that can’t run after their brother in the backyard becomes a runner at 30 months.  A special needs child may not run for years.  That is a long time to be left in the dust when everyone is running.  Is there any wonder that parents see more frustration, more tears, more stubbornness?

My saddest story of failed inclusion is when a family placed their special needs child in a toddler development group with mobile kids.  Even though this child had a personal aide, he still watched as his peers got up from the snack table and ran outside.  They left him with the aide, who then carried him outside so he could WATCH his peers climb and run.  He became distraught at home when he was left alone in a room.  A puddle of tears.  It was so sad to see.  No one had thought of the emotional cost of inclusion to this toddler, only the social and academic benefits.

What can be done?

I teach families the Happiest Toddler on the Block strategies as soon as they are appropriate.  Dr. Karp’s techniques build a child’s skills while enhancing interpersonal connections.  Yes, sometimes you have to provide consequences for aggression, but mostly it is about building frustration tolerance and emotional intelligence.  For everyone.  I use these techniques all day long.  I could never handle so many toddlers for so many years without them!

Looking for more information on special needs toddlers?  Read Need to Support A Child’s Independence? Offer to Help Them! and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.

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When Writing Hurts: The Hypermobile Hand

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Many children resist doing their homework, but most kids say “Its so BORING!” not “My hand hurts too much”.  If a child is complaining of pain, and they don’t have a joint disease such as JRA, the first thought is hypermobility.  The good news is that there are a few fast fixes that can decrease or even eliminate hand pain.

It is rare that hypermobility in the hand is directly addressed at the preschool level unless it is generalized throughout the body or severely reduces pencil grasp.  Many children have atypical grasp patterns when they cannot achieve the required stability for a standard pencil grasp.  Children with mild instability and no other developmental issues may still be able to write legibly and even fast enough to complete assignments in the early grades.  It is when the volume of work increases or the joint stability decreases that therapists get a request for service.

Here are a few strategies that can support hypermobile kids to write with less pain:

  1. Use a tabletop easel.  These can be foldable or static.  They support not just the wrist and forearm, but also the shoulder and trunk.  The angle of an easel both supports correct wrist positioning and decreases strain on the wrist and hand.  Some easels come with clips that hold the paper, but they should be placed on an angle to mirror the natural arm position.  This will require more table space, so be aware that the size of the easel could be an issue.  Simple hack:  use a three-ring binder as an easel.
  2. Enlarge the width of the pencil shaft.  My favorite pencils for grades 1+ (see photo above) have a standard #2 lead, but a wider shaft. Joint protection principles tell us that avoiding a closed joint position should lead to less strain on joints and supporting ligament structures.  You could use some of the adaptive pens available, but I find kids reject these as looking strange.  Of course, if you enlarge the shaft oo much you will find that it is more awkward, not less.  Think of those novelty pencils you buy in gift stores on vacation.  Cute but useless.  Nobody really writes with anything that thick.  Match the child’s hand size to the pencil.
  3. Increase the texture of the pencil shaft for easier grip, less pain, and more endurance.   Everyone has seen the rubbery grips you slip onto a pencil.  You can slide 3-4 onto the entire shaft, or add some tape to create a non-slip surface.  I have been adding kineseotape or Dycem to handles this year, with good results.  You are battling grasp stability, but also fatigue.  A hand that is tired is a hand that experiences more pain.  Adding texture reduces the amount of force needed for proprioceptive registration (a fancy way of saying that kids need to squeeze to fully feel what is in their hand).  Reducing force reduces pain and fatigue.
  4. Teach pacing.  Kids think that the faster they write, the faster they will be out of pain.  Breaking up the work can have better results, but it isn’t natural for children to pace themselves.  In fact, I have never seen a young child do so.  You have to teach this to kids who likely will have joint instability throughout their school years.  A schedule, a timer, organizing assignments and breaking them down into heavy writing choices and light writing choices all help.
  5. Splinting can be a real option.  Not a heavy plastic or metal splint (usually).  A neoprene splint can be a lightweight supportive choice.  These splints are comfortable and washable.  These are affordable without insurance for most families, and your OT can help you decide if this is a worthwhile pursuit.  They are durable but easily lost by younger children, so not all families send one to school.  But the support is real, and kids that have been told for years to “fix your fingers” can feel relieved that they can now focus on writing and composing on the paper.

For more information on hypermobility, read The Hypermobile Hand: More Than A Strength Problem and For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

Looking for more assistance with hypermobility?  My new e-book is coming out this summer, and it will address the issues of the early years (0-5).  The series will continue with school age kids and teens.  But you don’t have to wait; visit my website tranquil babies and request a consultation to discuss your child’s treatment plan and make a better plan that works for everyone…today!