Category Archives: low tone

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

biljana-martinic-KjFBdofUjco-unsplash

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

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

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

What makes this book unique?

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

Who should read this book?

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

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

Some Basic Principles of Positioning:

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

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

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

 

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

dakota-corbin-PmNjS6b3XP4-unsplash

Advertisements

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

 

lubomirkin-XKpPsuuGE_Q-unsplash

Throwing the bathwater out and keeping the baby

Many of the children I treat every year have some degree of hypermobility.  Some of them arrive on my caseload with diagnoses such as Prader-Willi syndrome or Down syndrome.  Their low muscle tone is understandable, and their hypermobility has been easily observable since birth.

There are always a few children that have been given the BJHS diagnosis.  Most of them have issues with delayed gross and fine motor development.  Many of them are already wearing orthotics.  Many of them struggle to communicate, demonstrating a level of instability and difficulty controlling their trunk, neck and mouth.  Few of them are complaining of pain, but most have low endurance, poor stability in dynamic positions, and use compensatory patterns to move.

So is this all that benign?  I don’t think so.  These kids are at huge risk for cumulative and progressive joint, ligament, and muscle issues.  They are also at risk for social and emotional issues that arise from their inability to keep up with their peers and the difficulty of fulfilling the expectations of school, friends and family, as well as struggling to handle their own desire to move and grow while fighting hypermobility.  Almost all of the children I have treated with BJHS have average to above average intelligence and display sensory-based issues; sensory seeking, sensory aversion or sensory modulation.

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

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

francois-verbeeck-A-nkh5qGYv8-unsplash

 

Hypermobility Or Low Tone? Three Solutions to Mealtime Problems

 

sara-darcaj-OZ5t_ZsfwBM-unsplash

 

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!

 

phil-goodwin-TxP44VIqlA8-unsplash.jpg

 

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

biljana-martinic-KjFBdofUjco-unsplash.jpg

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

What kind of problems?

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

There is a sensory impact as well.

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

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

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

Does Your Older Child Hate Writing? Try HWT’s Double-Lined Paper

 

This paper has been more useful to older kids (6+) that I see for handwriting help than any other paper on the market, and almost any other tool Problems With Handwriting? You Need The Best Eraser , Great Mechanical Pencils Can Improve Your Child’s Handwriting Skills .  Why?  Regular lined paper, and almost all worksheets, are usually jam-packed with lines.  Red lines, green lines, lines with airplanes and worms.  There are papers designed by occupational therapists that are even more complex than the mass-market choices.

All this is often visual noise to kids with sensory processing issues and ocular or visual-perceptual issues.  These problems are sometimes subtle and appear to be behavioral.  The kids who “hate to write”.  The kids who look away when you are demonstrating how to write a letter or spell a word.  The kids who cannot seem to remember where to start a letter, even after repeated practice.  These children often do much better with HWT’s double-lined paper.

Let’s drill down into the design of this unique paper:

  • Double-lined paper provides just two lines; the baseline and the midline.  Knowing where to start uppercase letters and tall lowercase letters is important, and this paper encourages practice and awareness while still giving some structure to writing.
  • There is a wide empty space between sets of lines.  This is intentional; children have room to place the tails of lowercase “y” and “j”, for example, without blocking the uppercase or tall lowercase letters of the next line of writing.  For many kids, not knowing what to do about crowding and spacing is a good reason to stop trying to write well, or sometimes even write at all.
  • This sturdy paper is pre-punched to be used in a 3-ring binder.  The quality of the paper is very high, which means that it doesn’t tear easily when a child erases a mistake.  Most schools provide the thinnest paper for teachers to use as handouts, creating the potential for a disaster when given to a child that struggles with grading their force on an eraser, or makes multiple errors in a word.
  • Brains get practice in sizing and proportion.  Once kids have a pattern of letter formation, it is easier to accomplish without the extra midline.  But so many kids need that “training wheel” effect much longer than scrolls recognize.  Many kids need a day or two of double-lined paper use to start understanding the way a letter “h” is twice as tall as a letter “a” and the same size but aligned differently than the letter “y”.  Of course, pointing it out is important, and so is working on other writing qualities such as letter and word spacing.
  • Kids write faster.  Because they are guided to proportion and start letters correctly, they don’t waste time thinking about it or erasing incorrect letters.  Again, this doesn’t mean their brain isn’t taking it all in.  If that were true, we would start every kid on single-lined paper in preschool.
  • There are three line sizes, so you don’t have to abandon the double-lines when your kid enter middle school.  I will admit that I wish the pre-k/K paper were thicker.  But it is still fairly sturdy.
  • You can alternate using this paper with single-lined paper to see when to “take the training wheels off” and stop using double-lined paper.  Kids should always have a chance to practice with standard paper, but when the choice is between fighting and crying, and quickly executing a homework assignment, it is no contest.

 

The best paper wins.

joao-rafael-662575-unsplash

When Writing Hurts: The Hypermobile Hand

IMG_1145

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

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

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

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

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

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

Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing

jose-antonio-gallego-vazquez-690049-unsplash

Therapists always try hard to be optimistic when discussing their pediatric client’s future.  Why not?  Kids have amazing potential, and we aren’t fortune tellers; there are so many things that can go right.

As therapists, we also should share the reality of how bad choices create unfortunate consequences.  Among them are the long-term results of falls, especially head injuries.  Kids fall, kids trip, kids walk into things.  All kids, and for much of early childhood.  The hypermobile child will have more episodes of injury, often has greater injury occurring in each episode, and frequently experiences a slower or less complete recovery from injury.  This isn’t a criticism of parents, kids, or even acute medical care.  It is the reality of living with a condition, often a syndrome, that has effects beyond just loose joints.

This can include connective tissue disorders that create weak skin, ligaments, and tendons, decreased pain registration, delayed protective reactions when falling, and cognitive or behavioral complications that make learning and controlling actions more difficult.  Hypermobile kids often spend more years in an unstable state in which they need assistance and supervision.  And more years when they are vulnerable to serious injury.  A head injury or a spine injury isn’t an “unfortunate” event.  It is frequently a life-changing event.  The course of education and employment can be forever altered.  For the worse.

In a clinic or school setting, your therapist is bound to guidelines that indemnify them and the facility. While they cannot control what happens at home, you should know what to do to make your home safer for a child with hypermobility.  It begins with your environment, then you change your responses, then your build  your child’s ability to incorporate safety awareness into their day.

  • Create a safe but accessible home.  This expands on “baby proofing” to include railings set at a height that allow your child to push up rather than hang on them.  Removal of loose rugs and adding padded floor surfaces in common areas, especially areas where they are climbing or running.  Bathrooms are the location for many injuries once children become independent in toileting or bathing.  Instead of supervising them forever, create a safe place with hidden grab bars (there are toilet paper holders and towel racks that are actually grab bars) and non-slip flooring.  Place needed items within easy reach without climbing.
  • Teach safe movement from the start.  Children that learn how to move versus children that are passively moved will have more safety awareness.  For children that still need a lot of help, narrate your moves and weave in safety messages.  It will sink in.  Finally, don’t allow unsafe moves, even if they didn’t hurt themselves.  Tell them to try it again the safe way.  Children are unable to anticipate the results of their actions.  This is why we don’t let 12 year-olds drive or let 5 year-olds cross the street alone.  Sometimes the reason they do things our way is because we said so.  Until they are old enough to understand the “why”.
  • Share your thought processes with children as soon as they can wrap their heads around things.  Even kids in preschool can follow along with the idea that too many “boo-boos” will stop them from being able to play.  Older kids can learn that the right chair helps them stave off fatigue until they finish a game.
  • Ask your therapists for specific safety advice, and then carefully think through their answers.  The truth is that some therapists are more safety-aware than others.  I have been told that I am one of the most vocal therapists on a team when regarding safety issues.  Perhaps it is because I spent 10 years working in adult rehab, treating patients for problems that started decades before I met them.  I have seen what overuse and poor design has cost people.  By then it is often too late to do much more than compensation and adaptation.  I am committed to prevention with my pediatric clients.  The cost is too high not to say something and say it loud.

For more information and ideas about helping your child with hypermobility, read Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and Should Your Hypermobile Child Play Sports?

alexander-dummer-261098-unsplash