Tag Archives: Ehlers Danlos Syndrome

How To Improve Posture In Children With Low Muscle Tone… Without a Fight!

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With pediatric occupational therapy going on at home using parents as surrogate therapists, it isn’t helpful to ask a parent to do too much repositioning of children with low tone.  First of all, kids don’t like it.  Second, kids really don’t like it.

I have never met a child that enjoys therapeutic handling, no matter how skilled I am, and I don’t think I ever will.  They don’t know why we are placing their hands or legs somewhere, and they tend not to like to be told what to do and how to do it.  The best you can hope for at times is that they tolerate it and learn that therapists are going to be helping them do what they want to do For Kids With Sensory Issues and Low Tone, Add Resistance Instead of Hand-Over-Hand Assistance.

Leaving a child in an awkward and unstable position isn’t the right choice either.  They are going to struggle more and fail more when out of alignment and unsteady.  If you know this is going to happen, you can’t let them stay that way because you also know that this will blow back in your face in the form of frustration, short attention span, and children developing a sense that whatever they are doing or whomever they are doing it with is a drag.  A real drag.

So how can you improve the posture of a child with low tone without forcing them physically into a better position?

  • Use good seating and other equipment that facilitates postural control.  A chair that is too small, a slippery floor and footie pajamas….try not to make stabilization too hard unless you are a licensed therapist and you know how to juggle all the variables.  If you are a parent, ask your child’s therapist what kind of seating, tables, ride-on toys, etc are the right ones.  Don’t think your therapist knows what you need?  My e-books can help you and your therapist because they have guidelines and checklists to learn about selecting all of these things.  They are part of The JointSmart Child series! Read more here The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!   and here: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!
  • Respect fatigue.  A mom told me today that her daughter’s telehealth PT sessions end in tears at least half the time due to exhaustion.  That is simply unacceptable.  Great therapists don’t leave kids that upset for parents to deal with after the session.  They taper the session demands, and end on a good note.  There are always other positions to play in or other things to do when a child has fatigued postural muscles.  You know they are fried because if you present them with a fun activity and they simply cannot manage it, you aren’t being played.  They are tired.
  • Create routines that incorporate postural control.  My little clients over 2 know that their non-dominant hand had a job to do and what it is.  They know that we place feet in a certain way, and that specific games call for specific positions.  When good posture is a habit, there fights are fewer going forward.  They know what to do and what I expect and I know that they will be successful if they follow our routines.  Read How To Correctly Reposition Your Child’s Legs When They “W-Sit” and Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way for more information on this subject.

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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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Need a Desk Chair for Your Hypermobile School-Age Child? Check out the Giantex Chair

 

71ASiKXBSJL._AC_SL1200_.jpgOne of my colleagues with a hypermobile third-grader told me this chair has been a great chair at school for her child.  It hits a lot of my targets for a chair recommendation, so here it is:  The Giantex chair.

Why do I like it so much?

  • It is a bit adaptable and sized for kids.  No chair fits every child, but the more you can adjust a chair, the more likely you are to provide good supportive seating.  This chair is a good balance of adaptability and affordability.  My readers know I am not a fan of therapy balls as seating for homework.  Here’s why: Should Hypermobile Kids Sit On Therapy Balls For Schoolwork?
  • It isn’t institutional.  Teachers, parents, and especially kids, get turned off by chairs that look like medical equipment.  This looks like a regular chair, but when adjusted correctly, it IS medical equipment, IMPO.
  • It’s affordable.  The child I described got it paid for by her school district to use in her classroom, but this chair is within the budget of some families.  They can have one at home for homework or meals.  Most kids aren’t too eager to use a Tripp Trapp chair after 6 or 7.  It’s untraditional looks bother them.  This chair isn’t going to turn them off as easily.
  • This chair looks like it would last through some growth.  I tell every parent that they only thing I can promise you is that your child will grow.  Even the kids with genetic disorders that affect growth will grow larger eventually.  This chair should fit kids from 8-12 years of age in most cases.  The really small ones or the really tall ones?  Maybe not, but the small ones will grow into it, and the tall kids probably fit into a smaller adult chair now or in the near future.

For more helpful posts on hypermobile kids, read Joint Protection And Hypermobility: Investing in Your Child’s FutureHow To Correctly Reposition Your Child’s Legs When They “W-Sit” and When Writing Hurts: The Hypermobile Hand.

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Want more information to help your child and make life easier?  My newest book has finally arrived!

The JointSmart Child:  Living and Thriving With Hypermobility  Volume Two: The School Years is now available as a read-only download on Amazon and a printable download on Your Therapy Source .  It is filled with the practical information that parents and therapists need to make kids’ lives easier, safer, and more independent.

There are extensive forms and checklists for school and home, and strategies that make immediate improvements in a child’s life.  Learn how to buy and fill a backpack that doesn’t damage a child’s joints, how blankets can create more pain and sleep problems,  and how to help a child write and keyboard with greater control.  Read more about it here: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

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Joint Protection And Hypermobility: Investing in Your Child’s Future

 

allen-taylor-dAMvcGb8Vog-unsplash.jpgParents of hypermobile kids are taught early on not to pull on limbs while dressing them or picking them up.  It is less common to teach children how to protect their own joints.

In fact, parents may be encouraged by their child’s doctors to let them be “as active as they want to be, in order to build their strength”.  Without adding in education about  good joint protection, this is not good advice.  This post is an attempt to fill in the space between “don’t pull on their limbs” and “get them to be more active”.

Why?  Because hypermobile joints are more vulnerable to immediate injury and also to progressive damage over time.  Once joint surfaces are damaged, and tendons and ligaments are overstretched, there are very few treatments that can repair those situations.  Since young children often do not experience pain with poor joint stability, teaching good habits early is essential.  It is always preferable to prevent damage and injuries rather than have to repair damage.  Always.  And it is not as complicated as it sounds.

The basic principles of joint protection are simple.  It is the application that can become complex.  The more joints involved in a movement or that have pre-existing pain or damage, the more complex the solution.  That is why some children need to be seen by an occupational or physical therapist for guidance.  We are trained in the assessment and prescription of strategies based on clinical information, not after taking a weekend course or after reading a book.  I am thinking of writing an e-book on this subject, since there really is nothing much out there for hypermobile people at any age….

Some of the basics of joint protection are:

  • Joints should be positioned in anatomical alignment while at rest and as much as possible, while in use.  Knowing the correct alignment doesn’t always require a therapist.  Bending a foot on it’s side isn’t correct alignment.  Placing a wrist in a straight versus an angled position is.
  • Larger joints should execute forceful movements whenever possible.  That means that pushing a heavy door open with an arm or the side of your body is better joint protection than flattening your hand on it.  The exception is if there is damage to those larger structures.  See below.
  • Placing a joint in mid-range while moving protects joint structures.  As an example, therapists often pad and thicken handles to place finger joints in a less clenched position and allow force to dissipate through the padding.  We discourage carrying heavy loads with arms held straight down or with one arm/hand.

Remember:  once joints are damaged, if joints are painful, or the muscles are too weak to execute a movement, activity adaptations have to be considered.  There is no benefit to straining a weak or damaged joint structure.

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

 

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

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

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

 

Looking for more information on raising a child with hypermobility?

My latest e-book, The JointSmart Child:  Living and Thriving With Hypermobility  Volume Two:  The School Years is now available on Amazon as a read-only download and on Your Therapy Source as a clickable and printable download!  It has practical information about improving independence and safety for kids 6-12, including sports and the hypermobile child, improving communication with your child’s teachers and coaches, and how to address handwriting and keyboarding problems.  It has more forms and checklists than the first book (Volume One: The Early Years), but still covers all the important self-care issues like toileting and how to make your home safer for your child while keeping it comfortable and attractive.

 

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

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

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

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

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

Here are some strategies for you and your child:

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

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

 

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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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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.  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!

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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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Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues

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It is graduation time here in the U.S.  Kids (and parents) are thinking about the future.  But when your teen has chronic health conditions, the future can be uncertain and the decisions more complicated.  I know that the saying “Do what you love and you won’t have to work another day of your life” is very popular, but the truth is that career planning is much more than finding your passions.

Here are a few things to think about:

  1. Every teen needs to learn about their interests and their skills.  Regardless of medical concerns or limitations, picking a career path that doesn’t match any strong interests is a plan almost certain to fail.  It’s not just that doing what you are drawn to feels good.  There is a medical reason to pick a career that they don’t hate;  if the greatest part of the day or week will require them to do tasks they dislike or find boring, they are at risk for stress-related flares in their condition. Similar concerns exist when a career choice doesn’t match their skills.  Loving what you do but not having the right skills or talents is very frustrating.  It could be harder to get and keep a job without good skills.  Help your teen identify what interests them about life and school, and where they truly shine.  If your teen hasn’t had a chance to observe people working in the profession(s) they find interesting, make sure that they do so before they invest time and money in training.
  2. Look at potential careers with an eye to benefits, job demands and scheduling flexibility.  Most adults with chronic health conditions want to be employed, and every one of them will need health insurance.  In the U.S., that means finding a job that provides insurance or purchasing individual coverage after aging out of family policy coverage options at age 26.  Generous sick days and personal days are perks every employee desires, but for people with a chronic illness, those benefits allow for medical treatments and rest during periods of symptom flares.  The NYT has written about the fact that insurance isn’t total assurance that chronic illness won’t create major stress ,but insurance is essential.  Think carefully about the working environments common to a particular career path.  Some careers will have a high-stress pathway (i.e. trial attorney) but also less demanding types of work within the profession (in-office counsel).  Other careers require a high degree of physical stamina and skill.  These may not be the jobs you would think of right away as physically demanding.  For example, preschool teachers and hairdressers are on their feet most of the day, every day!  I have read posts from a former preschool teacher with hEDS that is now on complete disability payments.  Her career of sitting and bending and lifting little children has cost her a lot.
  3. Career planning and completing required training while living with a chronic and possibly progressive condition may require outside support.  Teens that have been able to perform in high school without any compensations such as 504 plans may need more help in college.  Higher education often expects more independence and more mobility (think large campuses and internships) from students.  Most universities have an office for disabled students. Their staff will work with students with disabilities to create a plan, but it is the student’s responsibility to inform the office of specific needs and to develop strategies with the staff and faculty.  If your teen doesn’t want to be “identified” as disabled, this is the time to talk about being proactive and positive.  Finding assistance and receiving effective support could make all the difference.
  4. Explore local and online support groups.   Adults with your teen’s medical issues may have useful strategies or tales of caution that will help you develop a plan or expose problems that you haven’t anticipated.  Remember that personal stories are just that: personal.  Experiences are quite variable and it is difficult or impossible to  predict another person’s path.

For a book that can help teens with the big transitions and the small challenges, check out Teens With Chronic Illness Or Disability Need A Good Guide: Easy For You To Say.  This book will be a great resource for life issues big and small.  If you or your child isn’t a teen any longer, read “Life, Interrupted” by Laurie Edwards.  She speaks about her challenges with a serious respiratory illness, but the issues regarding school, work, relationships and acceptance are all relevant.

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Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?

enis-yavuz-387710-unsplashThe short answer:  some of these kids, some of the time.  The long answer:  To use K-tape effectively, you need to understand the mechanics of tape on the skin and underlying tissues, how connective tissue disorders disrupt skin healing, how to minimize skin shear and inflammation, and that only using one type of tape may not be enough.

I love to use taping for kids with hypermobility, but kids with connective tissue disorders such as Ehlers-Danlos syndrome aren’t always able to tolerate taping without some significant adaptations.  Children that were preemies often have similar issues that make taping more challenging.  Fragile skin, immune system reactions, fragile blood vessels, etc. will require adaptations and alterations to standard taping procedures and protocols.  Read more about CTDs in Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue?.  But it doesn’t mean an automatic “no”!

Here are my clinical suggestions to make K-taping more successful for kids with connective tissue distorders:

  1. Very few children with connective tissue disorders are able to communicate discomfort clearly. Their hypermobility creates limitations in proprioceptive and kinesthetic awareness.  Children of all ages with poor proprioceptive discrimination have a sensory deficit that directly reduces their feedback for taping.   Therapists have to be very skilled at observation and clinical judgement.  A good therapist will carefully listen to a parent’s descriptions of movement, skin conditions and complaints to hear clues that should guide your taping.
  2. Assume significant skin sensitivity and fragility.  If a child sails through your test tape period, don’t assume that you can use regular taping procedures and protocols.  Always use a test tape, and consider doing multiple test tapes in different locations and with different levels of tension.  Paper-off tension is highly recommended in treatment, and so is caution with taping protocols that add significant skin shear.  Those include placing the tissue on stretch as you apply the tape, and protocols in which rotary force is exerted (such as spiral patterns around limbs).  Because skin recovery may be impaired, skin tolerance can deteriorate after repeated taping.  Use the most conservative treatment plan, even if you are getting good results.  Slow and steady is better for everyone.
  3. Expect to take taping breaks and shorten the amount of time tape stays on the skin. These kids should receive longer periods without tape.  This allows any micro-damage to be repaired.  Once the tape has lost the majority of it’s elastic properties, it is less beneficial and becomes more of a risk for skin integrity.  Instruct parents to trim the tape or remove it completely when the edges start to catch on clothing.  The effect is constant shear on the skin next to the loose edge.  This is irritating for all kids, but it can create significant inflammation for kids with CTD’s.  Try taping another location and returning to taping after a substantial break.  Children with connective tissue disorders usually have more than one area of instability that could benefit from taping.
  4. Use pediatric tape and pediatric protocols well into childhood and perhaps beyond.  I use the Milk of Magnesia barrier technique with all children under 3, and with all children with diagnosed or suspected connective tissue disorders.  I am also a big fan of PerformTex’ pediatric tape.  Their adhesive seems to be to be less intense than ROC Rx tape, and significantly less adhesive than regular tape.  The cute monkeys and flowers don’t hurt!  I have been using Kineseotex’ Light Touch tape, which has an ultra-gentle adhesive with good results.  The biggest drawback, other than cost, is that it is easily peeled off, so using excellent skin preparation and management, such as careful bathing and limiting clothing shear, is essential.  Once I started using pediatric tape, I haven’t looked back.  No parent wants to see their child’s skin inflamed, and no therapist wants to strain their client’s trust by appearing to be unconcerned about skin integrity and pain.
  5. Expect that some children truly cannot tolerate taping, and move on.  Good therapists have many different ways to make a difference in a child’s life, and taping may be tolerated better as a child grows up.  While this can happen, don’t get hung up on one treatment technique as a saving grace.  We can never predict the clinical course of a connective tissue disorder with certainty, so don’t give up, but don’t become rigid in your treatment planning either.

Looking for more information on treating hypermobility and hypermobility syndromes?

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 finally available!  Packed with useful strategies to build independence, ease in life at home and school, and improve a child’s safety, my newest books can help parents (and new pediatric therapists) solve the common problems that arise in daily life.  Empowerment is a combination of knowledge and confidence.  Find it here inside these two unique books!

Both books start out explaining why hypermobility has sensory processing and social/emotional aspects; it isn’t only an issue of movement control at all.  Parents who understand this are best suited to help their child succeed.  There are chapters that cover picking out the best bike, the right high chair or the safest independent bath routine.  I cover how to communicate about hypermobility with family, therapists, teachers and even doctors!  Making your home safer and more accessible is reviewed, and so are skills like using spoons and forks.  Even potty training is covered!

The JointSmart Child: Living and Thriving With Hypermobility  Volume One:  The Early Years and Volume Two: The School Years are available on Amazon as read-only downloads and on Your Therapy Source as printable and click-able downloads.  Imagine knowing how to help your child and teach your family and caregivers what to do so that you can feel more confident….today!

 

Check out How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children.

Are you the parent or the therapist of a child with EDS that has questions about taping or other therapy treatment?  Contact me through my website and book a consultation on my website  tranquil babies.  I will review your goals and your therapies, and help you identify how things can change to make greater progress today!

 

My e-book on potty training, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, is a great reference for therapists and a helpful resource for families of young children with low muscle tone.  Many of our hypermobile preschoolers are still in pull-ups because no one knows how to make it easier.  My book has readiness checklists and equipment assessment guides that can help kids move forward with training immediately!  Visit my website to purchase my book at tranquil babies, or go to Amazon , or visit Your Therapy Source, a wonderful site for therapy materials.

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Can Hypermobility Cause Speech Problems?

 

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As a pediatric OT, many of my clients have speech and feeding problems that are attributed to low muscle tone.  Very often, that is where assessment ends.  Perhaps it shouldn’t.  Joint hypermobility can also create issues such as dysarthria, disfluency and poor voice control.  It isn’t only about muscles and muscle coordination.  Being able to identify all the causes of speech delays and difficulties means better treatment and better results.

I have had the privilege to know a handful of master speech pathologists whose manual evaluation skills are amazing.  These clinicians are capable of identifying joint laxity and poor tissue integrity (which contribute to injury, weakness and instability) as well as identifying low muscle tone, sensory processing issues and dyspraxia.  They can assess whole-body stability and control, instead of ending their assessment at the neck.

It is sometimes difficult to clearly differentiate the origin of speech issues as coming from essential low muscle tone or from primarily hypermobile joints.  Assessing the youngest clients means that they cannot be formally interviewed and do not follow instructions carefully (or at all!) in an assessment makes evaluation a challenge.

Many times we are forced to rely on observation and history as much as we use responses from direct interaction with a child.  In truth, laxity and low tone often co-exist.  Lax joints create overstretched or poorly aligned muscles that don’t contract effectively.  Low muscle tone doesn’t support joints effectively to achieve and maintain stability, creating a risk for overstretching ligaments and injuring both tendons and joint capsules.  Kids who start out able to speak intelligibly can fatigue by the end of a sentence.  A vicious cycle ensues, creating more weakness, instability and more difficulties with motor control.

Some of the children that are diagnosed with flaccid dysarthria, poor suck/swallow/breathe synchrony, phonological issues and poor respiratory control may be diagnosed later in life (sometimes decades later) as having Ehlers-Danlos syndrome (EDS) or generalized benign joint hypermobility syndrome.  What is that?  Read Is Benign Joint Hypermobility Syndrome (BJHS) All That Benign?.   They often drop the final sounds in a word, or their voice fades away at the end of a sentence. These kids might avoid reading or speaking front of the class or with friends.  This isn’t from social anxiety or an oppositional attitude problem.  They are struggling to achieve and maintain the carefully graded control needed for these speech skills.

You may notice a breathy-ness to their voice that makes them sound more like their grandparents than their peers.  Children that avoid running in sports like soccer or hockey may be unable to continue because they are globally fatigued or in pain.    Being unable to stabilize their trunk results in inefficient muscular recruitment and limited grading of breath.  Ask any runner or singer and they will tell you what that means: game over.

If your child is struggling with these issues and isn’t receiving speech therapy, now may be the time to explore it.  A PROMPT-certified speech therapist may be especially helpful, as this specialized speech therapy treatment approach uses tactile and proprioceptive cues to learn the oral control needed for speech.  Your PT or OT can help address the breath control strategies, but learning to use them in speech often requires coordinating this with the training of a speech language pathologist.  You and your child may be relieved to learn that there is effective therapy out there!

Looking for more information on hypermobility?  I wrote 2 e-books for you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is finally available on  Amazon.com as a read-only download and on Your Therapy Source as a printable and click-able download.

Volume One is a practical guide that emphasizes building safety and independence in infants, toddlers, and preschoolers right from the start!  Parents learn how to select the right equipment, offer support and assistance that teaches safe movement, and builds a child’s confidence every step of the way.  There are even chapters to improve a parent’s communication effectiveness with babysitters, family members, teachers and doctors.  Read Parents of Young Hypermobile Children (and Their Therapists) Finally Get Their Empowerment Manual! to learn more today!

The JointSmart Child:  Living and Thriving With Hypermobility Volume Two:  The School Years is even more comprehensive, addressing school, sports, and even playing a musical instrument while dealing with hypermobility.  There are chapters on picking the right chair, desk, bike, and the right pencils to make life easier and safer for kids 6-12.  The appendix includes forms that parents can bring to IEP meetings, give to baby-sitters and forms to organize their thoughts before medical appointments.  Therapists can use the same materials for their home programs or for professional trainings in their facility or their school.  Read more about this new book here: Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!

This e-book is available now on  Amazon as a read-only download and on Your Therapy Source as a printable download.   Don’t have a kindle?  Not a problem; it is easy to download it from Amazon onto your phone or iPad!

Is your child struggling with toilet training?  I wrote another e-book just for YOU!

The Practical Guide to Toilet Training Your Child With Low Tone is available on Amazon and Your Therapy Source.  I looked far and wide for resources to help the families I work with as an OT.  There wasn’t anything out there that explained why kids and parents find this skill so hard to achieve, so I had to do something to help the situation.  When parents understand the underlying sensory and behavioral complications of low tone, they can make real progress with potty training!

 

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Hypermobile Toddlers: It’s What Not To Do That Matters Most

 

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Do you pick up your toddler and feel that shoulder or those wrist bones moving a lot under your touch?  Does your child do a “downward dog” and her elbows look like they are bending backward?  Does it seem that his ankles are rolling over toward the floor when he stands up?  That is hypermobility, or excessive joint movement.

Barring direct injury to a joint, ligament laxity and/or low muscle tone are the usual culprits that create hypermobility.  This can be noticed in one joint, a few, or in many joints throughout the body.  While some excessive flexibility is quite normal for kids, other children are very, very flexible.  This isn’t usually painful for the youngest children, and may never create pain for your child at any point in their lifetime.  That doesn’t mean that you should ignore it.  Hypermobility rarely goes away, even though it often decreases a bit with age in some children.  It can be managed effectively with good OT and PT treatment.   And what you avoid doing at this early stage can prevent accidental joint injury and teach good habits that last a lifetime.

  1. Avoid over-stretching joints, and I mean all of them.  This means that you pick a child up with your hands on their ribcage and under their hips, not by their arms or wrists.  Instruct your babysitter and your daycare providers, demonstrating clearly to illustrate the moves you’d prefer them to use. Don’t just tell them over the phone or in a text.  Your child’s perception of pain is not always accurate when joint sensory aren’t stimulated (how many times have they smacked into something hard and not cried at all?) so you will always want to use a lift that produces the least amount of force on the most vulnerable joints.  Yes, ribs can be dislocated too, but not nearly as easily as shoulders, elbows or wrists.  For all but the most vulnerable children, simply changing to this lift instead of pulling on a limb is a safe bet.  Read Have a Child With Low Tone or a Hypermobile Baby? Pay More Attention to How You Pick Your Little One Up
  2. Actively discourage sitting, lying or leaning on joints that bend backward.  This includes “W” sitting.   I have lost count of the number of toddlers I see who lean on the BACK  of their hands in sitting or lying on their stomach.  This is too much stretch for those ligaments.  Don’t sit idly by.  Teach them how to position their joints.  If they ask why, explaining that it will cause a “booboo” inside their wrist or arm should be enough.  If they persist, think of another position all together.  Sitting on a little bench instead of the floor, perhaps? Read   Three Ways To Reduce W-Sitting (And Why It Matters) for more information and ideas.
  3. Monitor and respect fatigue.  Once the muscles surrounding a loose joint have fatigued and don’t support it, that joint is more vulnerable to injury.  Ask your child to change her position or her activity before she is completely exhausted.  This doesn’t necessarily mean stopping the fun, just altering it.  But sometimes it does mean a full-on break.  If she balks, sweeten the deal and offer something desirable while you explain that her knees or her wrists need to take a rest.  They are tired.  They may not want to rest either, but it is their rest time.  Toddlers can relate.

Although we as therapists will be big players in your child’s development, parents are and always will be the single greatest force in shaping a child’s behavior and outlook.  It is possible to raise a hypermobile child that is active, happy, and aware of their body in a nonjudgmental way.    It starts with parents understanding these simple concepts and acting on them in daily activities.

 

Wondering about your stroller or how to help your child sit for meals or play?  Read Kids With Low Muscle Tone: The Hidden Problems With StrollersThe Cube Chair: Your Special Needs Toddler’s New Favorite Seat!,  Kids With Low Muscle Tone: The Hidden Problems With Strollers and Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility for practical ideas that help your child today!

Wondering about your child’s speech and feeding development?  Take a look at Can Hypermobility Cause Speech Problems? to learn more about the effects of hypermobility on communication and oral motor skills.

Looking for information on toilet training, or for more general strategies for your child with Ehlers Danlos syndrome, generalized ligament laxity, or low muscle tone?  

I wrote 2 e-books for you!

My first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, gives you detailed strategies for success, not philosophy or blanket statements.  I include readiness checklists, discuss issues that derail training such as constipation, and explain the sensory, motor, and social/emotional components of training children that struggle to gain the awareness and stability needed to get the job done.  You will start making progress right away!

This e-book is available on my website tranquil babies, at Amazon, and at Your Therapy Source.

My second e-book, The JointSmart Child:  Living and Thriving with Hypermobility Volume One:  The Early Years, is a more comprehensive guide to managing hyoermobility in the child birth -5 years of age.  Filled with information regarding ADLs, safety awareness at home and at preschool or daycare, it is designed to empower parents, not just provide information.  Parents learn how to pick the right high chair, booster seat, even the right clothing to improve their child’s independence and reduce accidental injuries.  There are even forms to share with babysitters, family  members, even a form to make doctor’s visits more productive!

Find this book on Amazon as a read-only download, or buy it on Your Therapy Source  as a printable and click-able download.  Don’t have a Kindle?  Don’t worry!  Amazon makes it easy to read on your hone or iPad.

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Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility?

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As a pediatric OTR, I am often asked to assess and teach proper pencil grasp.  Once you start looking, you see a lot of interesting patterns out there.  When a child clearly has low muscle tone and/or hypermobile joints, the question of what to do about an atypical pencil grasp used to puzzle me.  I could spend weeks, or even months, teaching positioning and developing hand strength in a child, only to find that they simply couldn’t alter their grasp while writing.

Now I triage grasp issues by determining if it is a problem for the child now or in the future.  An atypical pencil grasp can be an acceptable functional compensation or it can be a contributor to later joint damage.  What’s the difference?  You have to know a bit about hand anatomy and function, how to adapt activities, and how to assess the ergonomics of writing.

Children aren’t aware of most of the problems that low tone and/or hypermobility create when they hold a pencil.  They just want to write or draw.  Teachers and parents don’t know what is causing issues either.  The effects of their unique physiology often results in grasp patterns that cause parents pain just to observe; fingers twisted around the shaft of the pencil, thumb joints bent backward, etc.  The kids aren’t usually complaining; their lack of sensory receptor firing at the joints and muscles gives them no clues to the strain they are inducing.  None.  Occasionally children will complain of muscular fatigue or pain after writing a few paragraphs or completing an art project.  For the most part, they are unconcerned and unaware of what is really going on.  For a more detailed explanation, please check out Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children,

Do these funny grasp patterns reduce legibility?  Only sometimes.  There are atypical grasp patterns that are good choices for children with hypermobility.  One is to place the shaft of the pencil directly between the index and third finger, and allow the thumb to support the side of the pencil.  The knuckle joints of those fingers provide more stability than the standard tripod grasp.  This grasp pattern is illustrated at the beginning of this post.

I allow preschoolers who need to keep more than 3 fingers on the shaft of the pencil to do so, and wait to see what happens as they develop more overall hand control.  This is especially beneficial for the child with sensory discrimination issues or joint hypermobility.  Forcing a tripod grip isn’t always in their best interest now or for the future.

What can be done?  My favorite method to help children with low tone or hypermobility is to look at the problem with both a wide-angle lens and with targeted analysis.  I think about changing overall posture, altering any and all equipment, and examine the mechanics of movement.

Does handwriting instruction matter?  I think so.  The best writing program teaches children quickly, so that they don’t have to write 100 “A”s to learn how to write.   The only program I use is Handwriting Without Tears.  The high-quality materials and the developmental progression make learning easier and faster.  Read KickStart Kindergarten: Get Your Child Ready for Kindergarten Writing The Easy Way! to see some sample pages and understand how this particular book can work for ages 4-8.

Wondering if there are issues beyond writing that your OT can address?  Check out   Hypermobility and Music Lessons: Is Your Child Paying Too High a Price for Culture?Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and Three Ways To Reduce W-Sitting (And Why It Matters) for more information.

Atypical pencil grasp can be a problem, but it can also be a solution to a child who is struggling to write and draw in school.  If you have concerns, ask your OT to evaluate and explore the issue this week!

Looking for more information on raising (or treating) a hypermobile child? 

I wrote 2 e-books to help you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years

is filled with practical strategies to help parents of children 0-5 build safety, skills, and independence.  Written in easy-to-understand language and designed with chapter summaries that help busy parents find the answers they need, this book is unique in the world of special needs resources!  Therapists will find easy ways to boost ADL skills, safety awareness, and early fine motor skills with an awareness of the sensory processing needs of the hyper mobile client.

My e-book is available as a read-only download on Amazon and as a clickable and printable download on Your Therapy Source.  Worried that you don’t have a Kindle?  No problem:  Amazon’s downloads are totally supported on iPads and iPhones.

The JointSmart Child:  Living and Thriving With Hypermobility Volume Two:  The School Years

is my newest e-book for parents and therapists of kids 6-12.  Older children may still need to build their ADL independence and safety, but they also need to write and keyboard, and they play sports and musical instruments.  This book is larger and more comprehensive than Volume One, filled with forms and checklists to find the right chair, desk, bike, even the best way to arrange a bedroom for sleep.  Parents and therapists will have forms and handouts they can use in CPSE and CSE meetings with the school district and information on how to become an empowered consumer in doctor’s appointments.

It is available as a read-only download on Amazon  and as a printable download on Your Therapy Source ,and just like Volume One, Amazon doesn’t require you to have a Kindle to download my book.  They make it easy!

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Hypermobility in Young Children: When Flexibility Isn’t Functional

Your grandma would have called it being ” double jointed”.   Your mom might mention that she was the most flexible person in every yoga class she attended.  But when extra joint motion reduces your child’s performance or creates pain, parents get concerned.  Sometimes pediatricians and orthopedists do not.

Why would that happen?  A measure of flexibility is considered medically within the norm for children and teens.  Doctors often have no experience with rehab professionals, so they can’t share other resources with parents.  This can mask some significant issues with mild to moderate hypermobility in children.  Parents leave the doctor’s office without a diagnosis or advice, even in the face of their child’s discomfort or their struggles with handwriting or recurrent sports injuries.  Who takes hypermobility seriously?  Your child’s OT and PT.

Therapists are the specialists who analyze functional performance and create effective strategies to improve stability and independence.  I will give a shout-out to orthotists, physiatrists and osteopaths for solutions such as splints and prolotherapy.  Their role is essential but limited, especially with younger children. Nobody is going to issue a hand splint or inject the ligaments of a child under 5 unless a child’s condition is becoming very poor very quickly.  Adaptations, movement education and physical treatments are better tolerated and result in more functional gains for most middle and moderately involved hypermobile children.  Take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children to understand more about what an OT can do to help your child.

Low tech doesn’t mean low quality or low results.  I have done short consults with children that involve only adaptations to sitting and pencil choice for handwriting, with a little ergonomic advice and education of healthy pacing of tasks thrown in.  All together, we manage to extend the amount of time a child can write without pain.  Going full-tilt paperless is possible when pain is extreme, but it involves getting the teachers and the district involved.  Not only is that time-consuming and difficult to coordinate, it is overkill for those mildly involved kids who don’t want to stand out.  Almost nothing is worse in middle school than appearing “different”.  A good OT and a good PT can help a child prevent future problems, make current ones evaporate, or minimize a child’s dependence and pain.

Hypermobile kids are often bright and resourceful, and once they learn basic principles of ergonomics and joint protection, the older children can solve some of their own problems.  For every child that is determined to force their body to comply with their will to compete without adaptation, I meet many kids that understand that well-planned movements are smarter and give them less pain with more capability.  But they have to have the knowledge in order to use it.  Therapists give them that power.

Parents:  please feel free to comment and share all your great solutions for your child with hypermobility, so that we all can learn from YOU!

Is your hypermobile child also struggling with toilet training or incontinence?  Check out Low Tone and Toilet Training: Learning to Hold It In Long Enough to Make It to The Potty  to gain an understanding of how motor and sensory issues contribute to this problem, and how you can help your child today!