Category Archives: sensory processing issues

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

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

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

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

What makes this book unique?

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

Who should read this book?

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

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

Some Basic Principles of Positioning:

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

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

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

 

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

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Why Injuries to Hypermobile Joints Hurt Twice

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

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

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

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

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

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Pillowfort at Target: Should You Ask Your OT Before You Click “Buy”?

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

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

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

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

There are other choices for kids that seek movement, and they aren’t chairs.  They are sensory diets, created by therapists with years of experience in evaluating and treating your child.  Read Sensory Stimulation is not Sensory Treatment and Halloween With Sensory Sensitive Kids: The (Sensory) Tricks of the Holiday for more information on hoe Good OT treatment can help your child.

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Hypermobility Or Low Tone? Three Solutions to Mealtime Problems

 

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

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

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

 

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

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

What kind of problems?

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

There is a sensory impact as well.

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

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

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

Does Your 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.

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Does Your Child “Trace” the Room’s Perimeter or Hate Big Spaces? There is a Sensory-Based Explanation

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Space; the final frontier?

When you see it, it looks like Helen Keller crossed with a Roomba.  A child enters a space, even a familiar space, and runs the perimeter without stopping to play or examine things.  They may trace the room with their fingers, or repeat this process many times before they “land” and engage in some kind of purposeful activity.  If they get upset or challenged, they may resume this behavior.

One explanation for this behavior is that it is a solution to spatial processing difficulties.  When a typical child over the age of, let’s say 14 months, enters a room, they use their visual and auditory skills to tell them about the shape, height, and contents of the room.  As we mature, we use higher-order sensory input to inform our awareness and thinking.  We use sound in particular to tell us about the space to our sides and behind us that we cannot see.  Kids with ASD and SPD are stuck using immature types of information, and need to use them more often and more intensely to get the same knowledge.

How does this feel for them? Think of Notre Dame cathedral (before that awful fire).  The soaring ceilings and the long aisles create an other-worldly feeling you cannot escape.  Your brain knows you are not in your living room, or even in your own place of worship back home.  The medieval architects knew this too.  That was exactly the effect their were aiming for.  To set you back on your heels with the wonders of G-d.  How?  By making the spatial characteristics very unfamiliar and difficult to square with everyday experience.  To have you feel smaller and less in control in the presence of the almighty.

Now imagine that every space you inhabit gives you that feeling.  You enter a room and your eyes go everywhere.  You want to walk around to give yourself more information about where you are.  You don’t, but your nervous system is suggesting it.  You feel off balance and vulnerable.  Sound familiar?

What can you do?  Treating spatial processing issues isn’t easy.  Addressing limitations in vestibular and visual processing can really help, but I think that sound-based treatments are some of the easiest and most effective.  I use Quickshifts effectively to address spatial processing issues  Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation.  Of course, it is best to address all the sensory processing issues any child has to get the best results.  You want to cement in the skills of better sensory processing by achieving good functioning in multiple situations.  But spatial processing problems have to be addressed to achieve a calmer and more organized state.  You want every child to feel safe and supported wherever they go!

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Effective sensory processing treatment helps kids feel safe in big spaces