Category Archives: hypermobility

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

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

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

What Can You Do?

Tell Them To “Stomp-Stomp”!

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

 

Why Does It Work?

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

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

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

I wrote three e-books for you!

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

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

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

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Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies

I spent almost 10 years working in adult rehab before I transitioned to pediatrics.  I still teach joint protection, but I teach it differently.  Kids rarely have JRA or joint damage in general.  What they have in spades are serious degrees of hypermobility.  And the methods to use joint protection strategies so that tissue damage is minimized are different:

Joint protection strategies for hypermobility need to be adapted from those for other disorders, in order to obtain the best results and put clients at low risk of accidental injury.

What’s So Different?

  • Hypermobility can create a different type of joint strain than OA or other joint damage, and different types of soft tissue damage.  Understanding the way placing force on hypermobile joints can damage them is essential to understanding how to guide clients correctly.
  • Excess mobility reduces sensory feedback even when pain isn’t a factor, and can create different types of pain that aren’t as common as in RA, OA, or other joint deformities.  I laugh a little bit , and then groan, when I see articles on proprioceptive loss in hypermobility that focus on only lower extremities.  There are a whole bunch of joints above the waist, guys, and hypermobility affects each and every one of them as well.  Just because you aren’t using them to walk doesn’t mean you don’t need proprioception to use them…..!  I wonder who thinks this is just a lower extremity issue?
  • Hypermobility appears to cause dyspraxia that can “disappear” after a few repetitions, only to reappear after a while or with a new activity.  How can that be?  It can’t.  Praxis doesn’t work like that.  What you are seeing is a lack of sensory feedback that improves with repetition, only to be replaced with a lack of skilled movement from fatigue, or from overuse of force, or pain.  This is really poorly understood by patients, and even by some therapists, but makes perfect sense when fully explored.
  • Hypermobility is seen in a wide range of clients, including younger, more active people who are trying to accomplish skills that are less common in the over-60’s set that we see for OA.  Different goals lead to different needs for joint protection strategies and solutions.
  • Joint damage isn’t evident until long after ligament damage has been done.  People with hypermobility at every age need to protect ligaments, not just joint surfaces.  This isn’t always explained.
  • Their “normal” was never all that normal.  Folks with RA and OA often have years, even decades, of pain-free life to draw on for motor control.  Hypermobility that has been with a person for their entire life deprives them of any memory of what safe, pain-free movement, should feel like.  They are moving “blind” to a degree.  Incorporate this fact into your treatment.
  • So many people are hypermobile in multiple joints that the simple old saws  like “lift with your legs, not your back”  won’t cut it.  Whatever you learned in your CEU course on arthritis won’t be exactly right. Think out of the box.
  • The reasons for hypermobility have to be accounted for.  Genetic disorders like PWS, Down syndrome, and Heritable Disorders of connective Tissue (HDCTs) bring with them other issues like poor skin integrity and autonomic nervous system dysfunction.  Always learn about these before you provide guidance, or you risk harm.  We therapists are in the “do no harm” business, remember?

 

This fall I may start writing a workbook on addressing the use of joint protection, energy conservation, pacing and task adaptation for hypermobility.  There is certainly nothing out there currently that is useful for either therapists or patients.

in the meantime, please read Need a Desk Chair for Your Hypermobile School-Age Child? Check out the Giantex Chair , Hypermobility and Music Lessons: How to Reduce the Pain of Playing and Why Injuries to Hypermobile Joints Hurt Twice

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Better…unless that shoulder and elbow are as hypermobile as that wrist and those MCPs!

Toilet Training? Your Child Needs the Right Shorts!

 

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

Target has your back!

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

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

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

Want more help with your child?  

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

Helping Children With Low Muscle Tone Manage Summertime Heat

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

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

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

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

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

What can parents do?

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

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

  • Dress them lightly and in light-colored clothing.

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

  • Offer healthy popsicles and cool drinks frequently.

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

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

Looking for more information on helping children manage low tone?  

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

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

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

 

Is Your Child With Low Tone “Too Busy” to Make it to the Potty?

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Since writing my first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, I have fielded a ton of questions about the later stages of potty training.  One stumbling block for most children appears to be “potty fatigue”.  They lose the early excitement of mastery, and they get wrapped up in whatever they are doing.  What happens when you combine the effects of low tone with the inability of a  young child to judge the consequences of delaying a bathroom run?  This can lead to delaying a visit to the bathroom until it is too late.  Oops.

Kids with low tone often have poor interoceptive processing.  What is that?  Well, interoception is how you perceive internal sensory information.  When it comes to toileting, you feel fullness in your bladder that presses on your abdominal wall, in the same way you feel a full stomach.  This is how any of us know that we have to “go”.  If you wait too long, pressure turns to a bit of pain.  Low muscle tone creates a situation in which the stretch receptors in the abdominal muscles and in the bladder wall itself don’t get triggered until there is a stronger stimulus.  There may be some difficulty in locating the source of pressure as coming from the bladder instead of bowel, or even feeling like it could be coming from their back or stomach.  This leads to bathroom accidents if the toilet is too far away,  if they can’t walk fast enough, or if they cannot pull down their pants fast enough.  You have to work on all those skills!

Add in a child’s unwillingness to recognize the importance of the weak sensory signals that he or she is receiving because they are having too much fun or are waiting for a turn in a game or on a swing.  Uh-oh.  Not being able to connect the dots is common in young children.  That is why we don’t let them cross a busy street alone until they are well over 3 or 4.  They are terrible at judging risk.  Again, this means there are skills to develop to avoid accidents.

What should parents do to help their children limit accidents arising from being “too busy to pee?”

  1. Involve kids in the process of planning and deciding.  A child that is brought to the potty without any explanations such as “I can see you wiggling and crossing your legs.  That tells me that you are ready to pee” isn’t being taught how to recognize more of their own signs of needing the potty.
  2. Allow kids to experience the consequences of poor choices.  If they refused to use the potty and had an accident, they can end up in the tub to wash up, put their wet clothes in the washer, and if they were watching a show, it is now over.  They don’t get to keep watching TV while an adult wipes them, changes them, and cleans up the mess!
  3. Create good routines.  Early.  Just as your mom insisted that you use the bathroom before leaving the house, kids with low tone need to understand that for them, there is a cost to overstretching their bladder by “holding it”  Read  Teach Kids With Ehlers-Danlos Syndrome Or Low Tone: Don’t Hold It In! to learn more about this.  The best strategy is to encourage a child to urinate before their bladder is too full, make potty routines a habit very early in life, and to develop the skills of patience stretching Stretch Your Toddler’s Patience, Starting Today!  from an early age.  Creating more patience in young children allows them to think clearly and plan better, within their expected cognitive level.

Looking for more information on managing daily life with your special needs child?

I wrote three e-books for you!

My e-book on toilet training, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, and my e-books on managing pediatric hypermobility, are available on Amazon as read-only downloads, and on Your Therapy Source as printable downloads.  The JointSmart Child:  Living and Thriving With Hypermobility  Volume   One:  The Early Years and Volume Two:  The School Years are filled with strategies that parents and therapists can use immediately to improve a child’s independence and safety.

Your Therapy Source has bundled my books together for a great value.  On their site, you can buy both the toilet training and the Early Years books together, or buy both hypermobility books together at a significant discount!

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How To Pick A High Chair For Your Special Needs Child

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My first Early Intervention home visit always involves seeing the child sitting in their high chair.  I learn a few things.  I learn how the child is handled by the parent or caregiver, including whether they use the available strapping to secure them.  Many don’t, and don’t realize that it is part of the problem.  I learn how well the child fits into the chair, and how well the child can balance and reach in this chair.  And I hear about what problems the parent or caregiver is having with using this seating system.

This post is intended to share some of what therapists know about seating, and how to pick a better chair for kids that have challenges.

Every parent reading this post should know that their child’s therapists are their best source for getting the right high chair.  Never consult Dr. Google when you have licensed professionals available.  There is a reason for that license!  The folks you meet online cannot evaluate your child and provide safe recommendations for you.  This includes me; my comments are meant to educate, not prescribe.  That would be unethical and unsafe.

Typical children need a high chair when they can maintain their head balanced in the center and can start reaching and holding a bottle or finger food.  Before that, they use a feeding seat.  Feeding seats are slightly-to-moderately reclined and do the job of a parent cradling a child while feeding.  A child in a feeding seat usually isn’t expected to independently steady their head or hold a bottle. There are usually straps that stabilize a child’s chest and shoulders as well as a strap that stabilizes their pelvis.

Again, not every adult uses these straps correctly to give a young child the best support.  I will always do some education on methods to correctly position and adjust strapping.  The adult’ reaction (relief, curiosity, resistance, disinterest) tells me a great deal about what is coming down the pike.  Some special needs kids will use a feeding chair well past 12 months of age.  The commercially-made feeding chairs aren’t large, so some kids won’t fit  into one much past 18 months.  After that happens, we have to think about either a commercial high chair or adaptive seating.

Commercially-made high chairs in the US are gigantic.  They could hold a 4 year-old! This is always a problem for special needs kids.  Too much room to move in the wrong way isn’t helpful.   These chairs may or may not have chest/shoulder straps, and they may not have an abductor strap (the one between a child’s legs, that prevents them from sliding under the waist belt).  The best chairs have the waist belt low enough that it sits across a child’s lower hips like a car’s seat belt.  This is always preferable to sitting at the bellybutton level.  It provides more stability.

If a special needs child collapses their posture while sitting in a high chair, when I stabilize their hips in a way that doesn’t allow them to collapse, they might complain.  They were allowed to slouch so much that this new position, with appropriate core activation, feels wrong to them.  It can take a while for a child to learn that eating and playing in a chair requires them to use their core.  I allow them to gradually build up their abilities with short periods of eating and playing.  Not every parent is comfortable finding out that they were contributing to core weakness by allowing a collapsed posture.  I don’t add to that feeling; you know more, you do better.  Simple as that. No guilt.

Some providers insist that every child, at every age and stage, have a place to put their feet.  The strongest proponents of this idea are usually not therapists but educators or speech therapists who attended a positioning lecture or inservice.  Occupational therapists know that a child that doesn’t have the hip control and emerging knee and foot control to place weight into their feet will not be able to use their feet to steady their trunk.  They will, however, figure out how to use a footplate incorrectly.  Unless a child is older than 2 and requires lower leg stabilization to avoid tightening their hamstrings (which will derail their positioning) and sliding forward, or to prevent sensory-seeking or ataxic movements, I don’t strap a child’s feet onto a footplate, or even worry about providing a footplate.  A child that is in a feeding chair, or just beginning to use a high chair, isn’t going to use a footplate correctly, and is more likely to use one to ruin previously decent positioning.  A child that is able to bench-sit or is starting to take weight into their feet?  That child can use a footplate to build sitting control.  Here is a post to help you use one well: A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair

Special needs kids that have very limited head and trunk control will often need an adaptive seat that gives them more support.  It can transform them!  More support can allow more freedom, not less.  These chairs are able to be customized, are obtained through DME vendors and can be paid for by insurance or EI.  They are expensive, and considered medical equipment, not chairs.  Parents need instruction in their use to avoid harming a child by too intensive strapping and incorrect adjustments.  But when done right, they can transform a child’s abilities in ways that no commercially-available chair can accomplish.  Giving a child a seating system that frees them to reach and look and eat and communicate is a wonderful feeling.  Those of us that are trained in seating evaluation know that the right chair can build skills, not substitute for them!

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How Therapeutic Listening Enhances Motor Skills

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

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

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

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

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

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

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

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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?

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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.  Your Therapy Source has created book bundles, discounting all of my books when you buy more than one, making it more affordable to get the information you need.

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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Potty Training in the COVID-19 Age

 

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Parents are staying home with their toddlers and preschoolers now.  All day.  While this can be a challenge, it can also be the right time to do potty training.

Here’s how to make it work when you want to teach your toddler how to “make” in the potty:

  1. You don’t have to wait for readiness.  What you might get instead is a child that has lost the excitement of being praised by adults, and fears failure more than seeks praise or rewards.  If that sounds like your child,  quickly read Waiting for Toilet Training Readiness? Create It Instead!
  2. Have good equipment.  If you don’t have a potty seat that fits your child or a toilet insert and a footstool that is stable and safe, now is the time to go online shopping for one.  Without good equipment, you are already in trouble.  Children should be able to get on and off easily and not be fearful of falling off the toilet.  If you are training a preschooler and not a toddler, you really need good equipment.  They are bigger and move faster.  Safety and confidence go hand in hand.
  3. Have a plan for praise and rewards.  Not every child will want a tiny candy, but nobody should expect a new toy for every time they pee in the potty.  Know your kid and know what gets them to try a new skill.  Some children don’t do well with effusive praise Sensitive Child? Be Careful How You Deliver Praise , so don’t go over the top if this is your kid.
  4. Know how to set things up for success.  If your child is typically-developing, get Oh Crap Potty Training by Jamie Glowacki, because she is the best person to tell you how to help you be successful.  She even has a chapter just on poop!  If your child has hypotonia or hypermobility, consider my e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone.  It is inexpensive, available on Amazon and Your Therapy Source, and gives you checklists and explanations for why you need to think out-of-the-box to potty train these kids.  You don’t leave for vacation without a map.  Don’t wing this.  Just don’t.
  5. Build your ability to calm yourself first.  Exactly like on an airplane, (remember them?  We will get back on them eventually) you need to calm yourself down in the face of refusals, accidents and tantrums.  You are no good to anyone if you are upset.  Read Stress Relief in the Time of Coronavirus: Enter Quickshifts and Should the PARENTS of Kids With Sensory Issues Use Quickshifts? for some ideas.

Looking for more information on potty training?  I wrote an e-book for you!

The Practical Guide to Toilet Training Your Child With Low Muscle Tone was my first e-book.  It is still my best seller.  There is a reason:  it helps parents and kids succeed.  This unique book explains why learning this skill is so tricky, and it gives parents and therapists detailed strategies to set kids (and parents) up for success!  Understanding that the sensory and social-emotional impacts of low muscle tone are contributing to potty training deals is crucial to making this skill easier to learn.  I include a readiness guide, strategies to pick the best equipment and clothes (yes, you can dress them so that they struggle more!), and how to move from the potty seat onto the adult toilet.

It is available on Amazon and on Your Therapy Source, a great site for materials for therapists as well as parents looking for homeschooling ideas.

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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.  Because hypermobile joint issues can be different from arthritic joints, read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies  and understand the principles below that apply to almost everyone:

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

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

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

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

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

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

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

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

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

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

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

 

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

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Are You a Trauma Survivor AND the Parent of a Special Needs Child?

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First, let me say that trauma survivors can be among the most loving and active parents I work with as a pediatric occupational therapist.

How do I know they are survivors?  Some parents share their histories openly, and some aren’t aware of what their actions and words reveal.  Occupational therapists that have worked in psychiatry are particularly attuned to patterns of behavior that suggest a history of trauma.  And after therapy has gone on for a while and the therapeutic relationship blossoms, some parents wish to share more of their personal story with me.

Trauma survivors that had complicated pregnancies Can The Parents of Pediatric Clients Have PTSD? , have children with genetic disorders, or deliver children who develop developmental delays, come in all ages and social/support situations.  Some currently have a psychotherapist for support, and some have done a tremendous amount of therapy in the past.  Others may not even recognize that what they experienced in the past was traumatic, or that there is specialized help for trauma-related issues.

What they all have in common is the (mostly) sudden stressor of having a child with special needs, the seemingly endless daily demands of care, and the constant seeking/managing of medical, educational and therapy services.  Survivors of trauma may not realize that they aren’t alone with their feelings of distress, or that their child’s therapists can help them cope.

I wrote a post on how therapists can help a child’s siblings, How an Occupational Therapist Can Help The Siblings of Special Needs Children , but parents with trauma backgrounds can ask for and receive support from their child’s therapists as well:

The simplest way therapists can help you is to validate the real demands of care and give you some perspective on what other family’s lives are really like.  We are aware that we are asking parents to do home programs and obtain equipment and toys that facilitate development.  We also know that life is messy, and it is OK if you admit that you find it hard just getting through the day.  You can ask us if other parents go through the same things that you do, and you will find out that you might be doing more than we expect.

If you are having a rough period, ask us to give you just the ONE thing that would be the easiest to incorporate into your day that would help your child this week.  We won’t be offended.  You might be surprised to find that we know what those days/weeks/months feel like too.

Some parents who are trauma survivors are less likely to ask for a review or clarification of a technique or treatment when therapists give them instructions.  This can come from fearing criticism, having been taught not to question authorities, feeling judged by therapists they perceive as punitive authorities, and even being dissociative during their child’s therapy session.  “Spacing out”, forgetting, being confused, etc. are all possible dissociative responses.  Parents who are reliving a NICU nightmare or who are triggered and recall their own medical trauma or physical abuse may have a lot of difficulty learning to do treatments on their child that involve any level of restraint or distress.  This can be managed, but only if it is addressed.

Your child’s therapists have many different ways of holding and positioning a child, and different ways of administering a treatment technique.  You can express your discomfort in general terms or you can tell us that this is a trigger for you, and you can ask us to make things easier for you without having to tell your own story.  Asking for a few reviews of home programs is seen by most therapists as indicating interest in what we do.  We aren’t offended; we are flattered.

Some parents need to be out of the treatment room during a session for their own comfort, and that is also OK.  We like to share your child’s progress, and we welcome you into the session, but we understand if you need to have some distance.  Scheduling treatment at your child’s school or in a therapy center, rather than at home, may be easier for you.  Your child will still receive excellent treatment.

Trauma survivors can be extremely distressed when their child cries in therapy, or even while witnessing their child struggle to learn new skills.  This can bring up distressing childhood memories for them, some of which they may not fully recall or even connect with their responses to their child’s therapy session.

Therapists can be healing models for actively managing a child’s distress and expressing how they handle their own feelings when children struggle.  A parent that grew up in a punitive home may not have seen adults model healthy reactions to a child’s distress.

Therapists can teach you their techniques for grading challenge and providing support that reduces your child’s level of agitation.  My favorite book to learn how to respond to young children warmly but with limits is The Happiest Toddler on the Block by Dr. Harvey Karp.  His techniques support healthy attachment and children respond much more quickly than parents expect.  Everyone feels better, not just the kids!  Read Teaching Children Emotional Regulation: Can Happiest Toddler on the Block Help Kids AND Adults? for more on this amazing program and how it can help both of you.  Today.

Some of the OT treatments that help children also can help their parents with regulation issues and/or trauma histories.  Read Should the PARENTS of Kids With Sensory Issues Use Quickshifts?  and Stress Relief in the Time of Coronavirus: Enter Quickshifts about one easy treatment to develop a wider window of tolerance that works well for both children and adults.

UPDATE:  I was a speaker at the Healing Together conference in Orlando FL this month (Feb.2020). It was an amazing gathering for adults with dissociative disorders, their loved one/supporters and clinicians.  I highly recommend this conference to parents who are trauma survivors that struggle with dissociation.

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How an Occupational Therapist Can Help The Siblings of Special Needs Children

 

joao-rafael-662575-unsplashThe parent of one of my clients recently returned from a conference related to her youngest child’s genetic disorder, and she told me that the presentation on helping the siblings of special needs kids really only offered one niblet of advice: “Try to give each sibling 10 minutes a day of “just us” time.”

My shoulders, and my heart, fell.  Telling exhausted and worried parents that they need to find more time in their day, every day, isn’t fair.  This mom could have used so many more specific strategies.  She didn’t need another way to feel inadequate to the challenge.  When you have a special needs child, you don’t have extra time.  Some days you aren’t sure you will be able to shower and shampoo.  Even if you could carve out some time by delegating and hiring help, the truth is that living with constant worry about the present and the future, running chronically short on sleep, and perhaps still recovering from a NICU nightmare…this doesn’t lend itself to stellar time management.

There are things that really do help.  Among them are getting the right kind of assistance and support, sharing the knowledge you receive from specialists, and handling everybody’s feelings with compassion (including self-compassion) and honesty.    Occupational therapists are out there helping families deal with life, since we have a solid background in the science of occupational demands and the psychological responses to illness, injury and trauma.  We aren’t psychotherapists, but we study the science of healthy life routines and behaviors.  We also spend a lot of time learning what special needs kids need to thrive, and this includes supporting the siblings and parents of our clients.

Here are some of the things I wish that the presenters had suggested:

  1. Ask your child’s therapists to train more of your family members and caregivers.  This means the partner that isn’t the primary caregiver for a special needs child, but it also could be the grandparent or the babysitter that is the backup emergency caregiver.  There are parents who feel they can never take a break because a half-spa day would mean that no one knows how to prevent their child from falling down the steps or how to know when a child is going in the direction of a meltdown that will derail the day.  If you have a medically fragile child, more people need to know how to keep them safe and healthy.  Your child’s therapists are skilled in providing training in their area of specialization.  They may not offer it to your other family  members unless you ask for it to be done.  This is an investment in your peace of mind.  Make it happen.
  2. Find out if your child’s siblings can enter a therapy session and learn more about how to help or encourage their special needs sibling.  Therapists can teach your child’s siblings, and because they are seen as authorities and not parents, this can work well to foster understanding and interest.  Even preschool kids can learn why the baby isn’t playing with them( but she is watching) and that means “I like you”.  Your therapists are pediatric specialists and are good at helping children of all ages, even if your social needs child is an infant.
  3. Learn methods to spread your warmth and concern without promising time commitments you may not be able to keep.  Something so simple (and explained in more detail in my new book below) is to talk with your child’s siblings about your feelings of anticipation before some fun event, even if it is reading a chapter in Harry Potter.  Telling them, days ahead, that you can’t wait to be with them can feel so good.  Later, you can remind them how much fun you had.  Don’t require them to reciprocate.  You are speaking about your feelings, and if they brush it off then don’t take it personally.  Tweens especially struggle with how to respond.  They still need to hear your warmth.
  4. Express your frustrations honestly, but mindfully, to your child’s siblings.  You will both feel better for it.  You don’t have to wail and keen, and in fact I would discourage that.  You can do that with your partner or your counselor.  But your other children need to know that feeling less than blissfully grateful for their special needs sibling is normal and not shameful.  When some feelings are perceived as unacceptable, they grow in importance and sprout little behavioral problems of their own.  Start by speaking about how tired you are.  It is honest and it is probably already visible.  Mention that you feel both things; love and frustration.  You have to adjust for your other children’s age and emotional tolerance, but I promise you:  this is going to really help.
  5. Ask for help.  And accept it when it is offered.  Some people don’t think they need help, and some don’t think they deserve it.  Some think that it will be seen as weakness or laziness.  Some ask for help and get a casserole instead of babysitting.  Some get advice instead of a casserole.  And some turn down help to avoid feeling as tired and frightened as they really feel deep inside.  Think carefully about how and why you don’t have or accept help, and try doing what doesn’t feel natural or easy.  It could be the best move you make this week.
  6. Reconsider the amount of therapy and tutoring you are doing.  I know; what therapist thinks you can overdo their own treatment?  Me.  Overscheduling therapies can backfire when you, your special needs child, and the rest of your family suffer from the demands.  The time demands, the loss of participation in real life fun like hayrides and playgrounds, etc.  The downtime that any normal person needs and so few parents and special needs kids get.  That affects siblings too, in lost time with parents and exhausted parents trying to wedge “me time” into a free moment.
  7. Make choices about what your priorities are, but allow yourself to have a priority that is not all about your child.  For example, you may have to accept that your house isn’t going to be spotless, and that you may be buying rather than making most of the holiday cookies.  But if making a few batches of a precious family recipe (my best friend from college always makes her Scottish grandmother’s recipe for fruit squares) will make you feel like a million bucks, then go ahead.  Yes, life with a special needs child is different from what you expected.  But you get to have some things from your previous life that bring joy!

I am so excited to report that my newest e-book is finally done!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is designed to empower the parents of hypermobile kids ages 0-5.  There are chapters on picking the right high chair, toys, even pajamas!  One section is just on improving communication with your family (including siblings), teachers, therapists and even doctors.  No other book answers questions that parents have about finding good eating utensils and how to navigate playdates and social events more successfully.

It is available on Amazon as a read-only download and on Your Therapy Source as a printable and click-able download.  Look for more information and a sneak peek at the ways every parent can learn what therapists know about positioning here:The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

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

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

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

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

What makes this book unique?

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

Who should read this book?

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

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

Some Basic Principles of Positioning:

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

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

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years is now available as a read-only download on Amazon.com

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

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

Already bought the book?  Please share your comments and suggestions for the next two books!  Volume Two is coming out in spring 2020, and will address the challenges of raising the school-aged child, and Volume Three focuses on the tween, teen, and young adult with hypermobility!

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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.

Do you have a hyper mobile child under 6?  

I wrote an e-book for you!

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years is a totally unique book.  It is both a manual for finding the right equipment and using the right techniques as well as an educational book for parents who are trying to figure out why loose joints create so many difficulties in daily life.  It even has chapters on building relationships with babysitters, family members, teachers and medical professionals!

Visit Amazon to buy a read-only copy, or Your Therapy Source for a click-able and printable version.

 

In this 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.  Some of them are almost certainly going to be diagnosed in the future with hypermobile Ehlers-Danlos syndrome (hEDS).

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

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

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

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

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

Looking for more information on raising a hypermobile child?

I wrote two e-books for you!

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

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

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

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Hypermobility Or Low Tone? Three Solutions to Mealtime Problems

 

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

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

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

 

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