Tag Archives: hypermobility

Tub Safety For Special Needs Children

Bathtime is usually a fun experience for young children.  Toys, splashing, bubbles.  But it’s not always fun for parents.  If your child has issues with sensory sensitivity, sensory seeking or hypermobility, you can feel like a one-armed paperhanger; juggling toys, washcloth and child!

One solution is to use a bath seat.  A word of common sense first:  never leave a child unattended in any type of bath seat.  Just because these devices improve stability, they don’t remove all the risks of bathing in a tub.  Young children need to be supervised at all times.  But a tub seat does help a special needs child remain sitting and stable, and that can really help parents during bathing.  Here are the positive effects of using a bath seat or tub insert:

Kids with sensory seeking or sensory sensitivity can find the expanse of the standard tub overstimulating, and in response, they may become agitated or fearful.  The youngest kids can’t tell you how this feels.  They just act up.  Using a bath seat or a tub insert can allow these children to stay in the tub long enough to be washed, and help them stay calm and relaxed.  Since bath time is usually before bedtime, that is a big plus!

For kids with instability, the bath seat or insert can prevent them from injuring themselves if they tip or lean too much.  They could even build their ability to sit up if the seat is well-chosen for their needs.  These kids need to acquire a sense of independence, and if they are given the right support, they can start to sit without an adult holding them.  They may be able to use both hands more freely, developing coordination for learning to wash themselves and confidence in their independence.

Selecting the correct equipment can be easy or challenging.  After determining what level of assistance your child needs, figure out if your child fits well in the seat you are looking at.  Some seats are made for very small children.  If your child is older or larger, keep looking until you find equipment for them.  Therapy catalogs and sites have equipment for children with significant difficulties in holding their head up or maintaining a sitting position.  These are more expensive than mass-market items, but they are often adaptable and you can remove parts as your child builds their sitting skills and safety.

Looking for more information on making your home safer for your child?  Read Should You Install a Child-Sized Potty for Your Special Needs Child? and How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child.  I am a CAPS as well as an OTR.  This is a natural progression, as occupational therapists are always thinking of safety and independence for their clients, all the way from infancy to end-of-life issues.

For more information about self-care and the special needs child, check out Kids With Low Muscle Tone Can Sit For Dinner: A Multi-Course StrategyImproving Daily Life Skills for Kids With Special Needs, and OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues.

Are you toilet training your special needs child?  Do you worry that it may never happen?  I wrote the e-book for you!  The Practical Guide To Toilet Training Your Child With Low Muscle Tone is filled with readiness tips, techniques to find the best potty seat, and techniques to make learning faster and easier for both of you!  It is available on my website tranquil babies, and on Amazon and Your Therapy Source )a terrific site for parents and therapists).  Read more about this unique guide here: The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

 

Teaching Safety Awareness To Special Needs Toddlers

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Parents anxiously wait for their special needs infants to sit up, crawl and walk.  That last skill can take extra months or years.  Everyone, and I mean everyone, uses walking as a benchmark for maturity and independence.

They shouldn’t.  A child with poor safety awareness isn’t safer when they acquire mobility skills.  Sometimes they are much less safe.  Yes, they may be able to move without your help, but they may need to be more highly monitored and given more assistance to learn how to be safe.  They are exploring their environment and their new skills that took them a long time to develop.  They have been wanting to climb on the couch for months.  Now they can.  Getting down the “safe” way isn’t as important to them, and maybe not as easy as sliding or rolling off.  Oops.

What can parents do to help their child be a safer (notice I didn’t say “safe”) ambulator, crawler, cruiser, etc?  

  1. Talk about safety before they are independent.  Will they understand what it means?  Probably not, but your tone and your insistence on how movement is done says that you value safety and you want them to do the same.  Kids learn from all of our actions.  Make this one familiar to them by being very obvious and explicit.
  2. Take your physical therapist seriously when she or he teaches you how to work on core strength and balance skills.  Yes, I still maintain that safety is more than a sensory-motor skill, but having the best possible sensory and motor skills is important.  Having good safety awareness and safety behaviors without these skills will make a child more vulnerable to falls and injuries.
  3. The same goes for sensory processing activities.  If your child cannot perceive the movement of falling, the tactile and proprioceptive change as they crawl or step on something, or tolerate multiple sensory inputs at once, they are much less safe, even with good strength and coordination.  Really.
  4. Know your child’s cognitive and social/emotional skills.  Impulsive children are less safe overall.  Children that cannot process your instructions or recall them without you are less safe.  Children that enjoy defying you more than they want to avoid falling are less safe.  If you know any of these things, you can gauge safety and react more appropriately.  You will be less frustrated and more helpful to them.
  5. Reward safe execution and do not reward unsafe behavior.   My favorite way to avoid punishment but also to send my safety message home?  Not providing eye contact or much at all in the way of conversation as I stop unsafe actions, and either removing a child from an unsafe situation or assisting them in using the safe method to execute their move.  They get no satisfaction from seeing me react strongly, and they get the message that I am not accepting anything but their best safety skills as they move.
  6. Stop a child that is moving in an unsafe way, and see if they can recall and initiate the safe choice before assisting.  You don’t want to teach them that only you will make them safe and they need someone to be safe out there. They have to learn how to assess, react and respond, and all children can build their skills.  Some need more teaching, and some need more motivation to begin to take responsibility for their safety.  Give them both.

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Three Ways To Reduce W-Sitting (And Why It Matters)

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Children who sit on the floor with their thighs rolled inward and their calves rotated out to the sides are told that they are “W-sitting”.  Parents are told to reposition their kids immediately.  There are even garments like Hip Helpers that make it nearly impossible to sit in this manner.  Some therapists get practically apoplectic when they see kids sitting this way.  Not me; I prefer to be a stealth ninja therapist: create situations in which the child wants to reposition themselves.

I get asked about W-sitting no less than 3x/week, so I though I would post some information about w-sitting, and some simple ways to address this without aggravating your child or yourself:

  1. This is not an abnormal sitting pattern.  Using it all the time, and being unable to sit with stability and comfort in other positions…that’s the real problem.  Typically-developing kids actually sit like this from time to time.  When children use this position constantly, they are telling therapists something very important about how they use their bodies.  But abnormal?  Nah.
  2. Persistent W-sitting isn’t without consequence, just because it isn’t painful to your child.  As a child sits in this position day after day, some muscles and ligaments are becoming overstretched.  This creates points of weakness and instability, on top of any hypermobility that they may already display.  Other muscles and ligaments are becoming shorter and tighter.  This makes it harder for them to have a wide variety of movements and move smoothly from position to position.  Their options for rest and activity just decreased.  Oops.  And they don’t feel uncomfortable in that position.  If you aren’t hypermobile yourself, you might not believe me.  Here is an explanation:  Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way.
  3. Sitting this way locks a child into a too-static, too-stable sitting position.  This appeals to the wobbly child, the weak child, and the fearful child, but it makes it harder for them to shift and change position.  Especially in early childhood, developing coordination is all about being able to move easily, quickly and with control.  There are better choices.
  4. A child who persistently W-sits is likely to get up and walk with an awkward gait pattern.   All that over-stretching and over-tightening isn’t going to go away once they are on their feet.  You will see the effects as they walk and run.  It is the (bad) gift that keeps on giving.

What can you do?

Well, good physical and occupational therapy can make a huge difference, but for today, start by reducing the amount of time they spend on the floor.  There are other positions that allow them to play and build motor control:

  • Encourage them to stand to play.  They can stand at a table, they can stand at the couch, they can stand on a balance disc.  Standing, even standing while gently leaning on a surface, could be helping them more than W-sitting.
  • Give them a good chair or bench to sit on.  I am a big fan of footstools for toddlers and preschoolers.  They are stable and often have non-skid surfaces that help them stay sitting.  They key is making sure their feet can be placed flat on the floor with their thighs at or close to level with the floor.  This should help them activate their trunk and hip musculature effectively.
  • Try prone.  AKA “tummy time”; it’s not just for babies.  This position stretches out tight hip flexors and helps kids build some trunk control.  To date, I haven’t met one child over 3 who wouldn’t play a short tablet game with me in this position.  And them we turn off the device and play with something else in the same position!
  • If your child still wants/ needs to sit on the floor, fix their leg position without risking damage to their hips and knees.  Read How To Correctly Reposition Your Child’s Legs When They “W-Sit” for more details.

For more strategies for hypermobile kids, take a look at  Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.

Looking for More Information on Hypermobility in Young Children?

I wrote an e-book for you!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is my newest e-book, filled with strategies to help parents understand the complexities of hypermobility and find answers to their everyday problems.  Learning how to help a child sit for a meal, get dressed, bathe and hold a crayon isn’t intuitive. Trying to figure out how to teach your babysitter or mother-in-law how to hold and carry your hypermobile child or how to give them a bath safely?  Parenting manuals don’t cover this, and your child’s therapists might not know how to help you either.

This book gives parents the information they need to feel empowered and confident!  There are even chapters on how to improve communication with a child’s siblings and the extended family, with babysitters and teachers, and even how to speak with your doctors to get results.  My book contains many of the techniques I have learned in my 25 years as a pediatric OTR and great ideas that parents have taught ME!

This unique e-book gives parents helpful information to make everyday life better.  

It is available on Amazon as a read-only download, or on Your Therapy Source as a printable and click-able download.  Buy it today!

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Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility

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Welcome to the world of faster (and faster) movement!  After mastering walking and possibly even running, older toddlers and preschoolers are often eager to jump on a ride-on toy and get moving.  If a child has had motor delays and has had to wait to develop the strength and balance needed to use a trike or another ride-on toy, they may be a bit afraid or they may throw caution to the wind and try it all as soon as possible!

Selecting the best equipment for kids that have low tone or hypermobility doesn’t end with picking a color or a branded character ( Thanks, Frozen, for bringing up my Disney stock almost single-handedly!).  In order to find the right choice for your child, here are some simple guidelines that could make things both easier and safer:

  1. Fit matters. A lot.  Hypermobile children are by definition more flexible than their peers.  They stretch.  This doesn’t mean that they should be encouraged to use pedals so far away from their bodies that their legs are fully extended, or use handlebars that reach their chins.  In general, muscles have their greatest strength and joints have their greatest stability and control in mid-range.  Fit the device to the child, not the other way ’round. Choose equipment that fits them well now,  while they are learning, and ideally it can be adjusted as they grow.  For the youngest or smallest kids, read The Best Ride-On Toy For Younger (or Petite) Toddlers and check out this great ride-on toy!
  2. Seats, pedals and handlebars that have some texture and even some padding give your child more sensory information for control and safety.  These features provide more tactile and proprioceptive information about grip, body positions and body movements.  You may be able to find equipment with these features, or you can go the aftermarket route and do it yourself.  A quick hack would be using electrical tape for some extra texture and to secure padding.  Some equipment can handle mix-and-match additions as well.  Explore your local shops for expert advice (and shop local to support your local merchants in town!)
  3. Maintain your child’s equipment, and replace it when it no longer fits them or works well.  Although it is more affordable to receive second-hand items or pass things down through the family, hypermobile kids often find that when ball bearings or wheels wear down, the extra effort required to use a device makes it harder to have fun.  The additional effort can create fatigue, disinterest in using the equipment, or awkward/asymmetrical patterns of movement that aren’t ergonomically sound.  Repair or replace either than force your child to work harder or move poorly.

Looking for more information about low tone and hypermobility?  

I wrote an e-book for you!

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years is finally done!  Filled with useful information to make caring for your hypermobile child age 0-5 easier, safer, and build their independence throughout the day, it is essential reading for parents of children with PWS, EDS, many forms of SPD, and Down syndrome.  This book covers how to teach others the best ways to care for your child, making life easier for everyone.  Understanding that hypermobility creates more than unstable joints is key.  It has emotional, social and sensory components that can slow down progress unless you know what to do.

Pick it up as a read-only download on Amazon or as a printable and click-able download on Your Therapy Source today!

Want more posts on hypermobility?  Read The Hypermobile Hand: More Than A Strength Problem , Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.

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For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

 

chen-hu-664399-unsplashI ran across a comment piece online that recommended parents teach their hypermobile  children to “listen to your body” to pace activities in an effort to avoid fatigue, pain or injury.  My reaction was fairly strong and immediate.  The sensory-based effects of hypermobility (HM) reduce interoception (internal body awareness)  and proprioception/kinesthesia (position and movement sense, respectively).  These are the  main methods of “listening” we use to know how we are feeling and moving.  For children with HM, telling them to listen to their body’s messages is like telling them to put on their heavy boots and then go outside to see how cold the snow is! 

Relying primarily on felt senses when you have difficulty receiving adequate sensory feedback doesn’t make…..sense.  What often happens is that kids find themselves quickly out of energy, suddenly sore or tripping/falling due to fatigue, and they had very little indication of this approaching until they “hit a wall”.  They might not even see it as a problem.  Some kids are draped over the computer or stumbling around but tell you that they feel just fine.  And they aren’t lying. This is the nature of the beast.

I am all for therapy that helps kids develop greater sensory processing (as an OTR, I would have to be!), but expecting HM kids to intuitively develop finely tuned body awareness? That is simply unfair. Kids blame themselves all too easily when they struggle.  What begins as a well-meaning suggestion from a person with typical sensory processing can turn into just another frustrating experience for a child with HM.

What could really help kids learn to pace themselves to prevent extreme fatigue, an increase in pain and even injury due to overdoing things?

  1. Age-appropriate education regarding the effects of HM.  Very young children need to follow an adult’s instructions (“time to rest, darling!”), but giving older kids and teens a medical explanation of how HM contributes to fatigue, pain, injuries, etc. teaches them to think.   Understanding the common causes of their issues makes things less scary and empowers them.  If you aren’t sure how to explain why your child could have difficulty perceiving how hard they are working or whether they are sitting in an ergonomic position, read Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for some useful information.  You could ask your child’s OT or PT for help.  They should be able to give you specific examples of how your child responds to challenges and even a simple script to use in a discussion.  Explaining the “why” will help children understand how to anticipate and prepare for the effects of HM.
  2. Consider finding a pediatric occupational therapist to teach your child postural, movement and interoceptive awareness, adapt your child’s learning and living environments for maximal ease and endurance, and teach your child joint protection techniques.  Occupational therapists are often thought of as the people that hand out finger splints and pencil grips.  We are so much more useful to your child than that narrow view!  For example, I have adapted desks for optimal postural endurance and decreased muscle tension.  This has immediate effects on a child’s use of compensations like leaning their chin on their hand to look at a screen.  OT isn’t just for babies or handwriting!
  3. Pacing starts with identifying priorities.  If you don’t have boundless energy, attention, strength and endurance, then you have to choose where to spend your physical “currency”.  Help your child identify what is most important to them in their day, their week, and so on.  Think about what gives them satisfaction and what they both love to do and need to do.  This type of analysis is not easy for most kids.  Even college students struggle to prioritize and plan their days and weeks.  Take it slow, but make it clear that their goals are your goals.  For many children with HM, being able to set goals and identify priorities means that they will need to bank some of their energy in a day or a week so that they are in better shape for important events.  They may divide up tasks into short components, adapt activities for ease, or toss out low-level goals in favor of really meaningful experiences.  Can this be difficult or even disappointing?  Almost certainly!  The alternative is to be stuck at an event in pain, become exhausted before a job is completed, or end up doing something that places them at higher risk for injury.
  4. Help your child identify and practice using their best strategies for generating energy, building stamina and achieving pain-free movement.  Some kids with HM need to get more rest than their peers.  Others need to be mindful of diet, use relaxation techniques, wear orthotics regularly, adapt their home or school environment, or engage in a home exercise program.  Learning stress-reduction techniques can be very empowering and helps kids think through situations calmly.    Sports can be an issue or they can be a wonderful way to build endurance and body awareness.  Read  Should Your Hypermobile Child Play Sports? for some ideas on managing pain, endurance and coordination.  Creating a plan together and discussing the wins and failures models behaviors like optimism and resourcefulness.  Children depend on adults to show them that self-pacing is a process, not an endpoint.

Looking for more information to help your child with hypermobility?  Take look at The Hypermobile Hand: More Than A Strength Problem and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.  My e-books on pediatric hypermobility are coming out soon!  Check back here at BabyBytes for updates.

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Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?

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My posts on proprioception and hypermobility have been popular lately, leading me to think that parents (and therapists) want more information on the sensory basis for their children’s struggles, and that often their treatments don’t include addressing their sensory processing issues. The Ehles-Danlos Syndromes (yes, there are more variants than just vascular and hypermobile!) are somewhat rare connective tissue disorders that can create generalized joint hypermobility.   Kids with EDS are often diagnosed as having a coordination disorder before they get the EDS diagnosis, and their families describe them as “clumsy” or even “lazy”.  I see them as having sensory processing issues as well as neuromuscular and orthopedic issues.   Take a look at Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for more on this subject.  If you are an OT or a PT and you are thinking of using K-tape, read my post Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders? before you begin.  You may change your approach and expand your thinking about taping after you read it!

There are some caveats in using techniques from sensory integration protocols with this population.  This doesn’t mean “no”; it means think about it first.  The use of the Wilbarger Protocol is one that requires some thought before initiating with EDS kids.

The Wilbarger Protocol:

For those of you who are unfamiliar with the Wilbarger Protocol, it is a common treatment approach for children with sensory sensitivity, sensory discrimination issues and poor sensory modulation.  Created by Patricia Wilbarger, a terrifically talented OTR  who directly trained me as a young therapist, it is a neurologically-informed treatment that can be used quickly for both immediate improvement in sensory processing and it can make long-term alterations in the brain’s ability to use sensory input for movement and state control.  The Wilbarger Protocol involves skin brushing and joint compression in a carefully administered method that uses the “gate theory” of sensory processing to assist the nervous system in regulating awareness and arousal.

There have been other protocols for regulation developed over the years, and adaptations to the Wilbarger Protocol have occurred since it’s creation.  But daily and repeated use of brushing the skin and use of joint compression to deliver deep pressure input (to inhibit light touch registration and enhance proprioceptive discrimination) are the cornerstones of treatment delivery.

Adapting the Protocol for Ehlers-Danlos Syndrome

Understanding the systemic nature of EDS is important.  Often therapists are unaware of the precautions since the child doesn’t have a formal diagnosis Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue?.  Since the Wilbarger Protocol was not created to treat EDS, I am recommending that therapists and parents consider adapting it to protect the joints and skin of children with EDS while still gaining benefit from this technique:

  • Reconsider using the brush.  Although the dual-treatment of brushing and joint compression makes this technique a powerful approach, kids with EDS often have skin that is more fragile than average.  It can bruise and tear more easily, especially with the vascular or classic EDS subtypes.  Small children will be brushed repeatedly over the same skin area, increasing the risk of shear, abrasion and bruising.  Children (and adults) with EDS will have skin reactions far in excess of the amount of pressure applied.  This is related to the assumption that the connective tissue that makes up skin and blood vessels is either weaker or thinner than typical children.  My advice: go with the joint compression component alone, and see if you get a clinically valid result without the risk of skin damage.
  • Make sure that you are well-trained in the positioning and administration of joint compression.  I have taken joint mobilization training courses, as well as having dual licenses in massage therapy and occupational therapy.  Being able to feel correct joint position and alignment is absolutely key when children have loose joints, so use this technique with care.  Avoid painful joints and limit repetition to the shortest amount needed to see a clinically meaningful response.
  •  Train parents extremely well before recommending home use.  Most parents can learn this technique with the right explanation and some practice.   If a parent seems unable to perform joint compression correctly, reconsider the use of a home program.  This has only happened once in my career.  A mom was truly unable to perceive the amount of force she was using.  She admitted that this had been an issue for her since childhood, and I suspected that she had her own sensory processing issues.  We moved on to other treatment choices.  There is never a reason to stick with a treatment that causes a risk to a child or makes a parent feel like they are a failure.  Ever.  To read more about the Wilbarger Protocol, read Why Is The Wilbarger Protocol So Hard To Get Right?

The true skill of a therapist is the ability to offer the just-right challenge to each child, based on a therapist’s observations, assessment and knowledge base.  I believe that there are many kids with EDS that could benefit from the Wilbarger Protocol when it is effectively adapted to their needs.

 

Looking for more information?

I wrote a book to help parents and new therapists address hypermobility in young children!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is the guide that tells you how to pick the right seating, the right clothing, the right utensils and how to adapt your home for safety without making it look like a therapy clinic!  This unique book teaches parents how to help their young children build independence in all the basic self-care and preschool skills they need.  There are chapters that explain how to communicate with babysitters, family members and even doctors.  Good communication makes parents feel empowered and confident.

It is available on Amazon as a read-only download and on Your Therapy Source as a printable and click-able download.

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

 

Need more than blog posts or a book?  Visit my website tranquil babies and purchase a phone/video session to discuss your concerns and learn about what occupational therapy has to offer your child!  Are you a new therapist, or new to pediatrics?  Let me help you build your skill set and amaze your clients with a mentoring session.

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Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior

 

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There is nothing worse than using a scientific study that correlates two variables and assuming causation. Translation:  If behaviors typical of disorder “A” are seen in a lot of people with problem “B”, we cannot assume that “A” is the cause of their behavior.   But we do it all the time.  People who love coffee adore studies that say coffee drinkers seem to live longer.  People who hate to exercise are validated by reports that find the number of heart attacks after exercise “is increasing”.

When it comes to labeling children’s behavior, we should take a couple of big steps back with our erroneous reasoning.  And when the label is ADHD, take three more.  Not because ADHD isn’t a big issue for families.  The struggles of kids, parents and educators shouldn’t be minimized.  We should be cautious with labels when two situations occur:  very young ages and multiple diagnoses that are determined largely by clinical observation, not testing.  Seeing ADHD in a child with hypermobility is one of those situations.

Hypermobility without functional problems is very common in young children.  Super-bendy kids that walk, run, hit a ball and write well aren’t struggling.  But if you have a child that cannot meet developmental milestones or has pain and poor endurance, that is  a problem with real-life consequences.  Many of them are behavioral consequences.  For more on this subject, take look at How Hypermobility Affects Self-Image, Behavior and Regulation in Children.

Yes, I said it.  Hypermobility is a motor problem that has a behavioral component.  I don’t know why so little has been written on this subject, but here it is:  hypermobile kids are more likely to fidget while sitting, more likely to get up out of their chairs, but also more likely to stay slumped on a couch.  They are more likely to jump from activity to activity, and more likely to refuse to engage in activities than their peers.  They drape themselves on furniture and people at times.  And they don’t feel as much discomfort as you’d think when they are in unusual positions Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way

Why?  Hypermobility reduces a child’s ability to perceive body position and degree of movement, AKA proprioception and kinesthesia.  It also causes muscles to work harder to stabilize joints around a muscle, including postural muscles.  These muscles are working even when kids are asleep, so don’t think that a good rest restores these kids the same way another child gets a charge from a sit-down.

Looking for more practical information about raising your hypermobile child?

I wrote a new book for you!  The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is your guide to making life easier.

Read The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!  to learn how my new e-book will build your confidence and give you strategies that make your child safer and more independent…today!  The above link includes a brief preview on positioning principles every parent of a child with hyper mobility should know.  You can find a read-only download on Amazon and a printable and click-through version on Your Therapy Source.

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When a hypermobile child starts to move, the brain receives more sensory input from the body, including joints, skin and muscles.  This charges up a sensory system that was virtually starving for information.  Movement from fidgeting and movement by running around the house are solutions to a child’s sense that they need something to boost their system.  But fatigue can set in very quickly, taking a moving child right back to the couch more quickly than her peers.  It looks to adults like she couldn’t possibly be tired so soon.  If you had to contract more muscles harder and longer to achieve movement, you’d be tired too!  Kids  develop a sense of self and rigid habits just like adults, so these “solutions” get woven into their sense of who they are.  And this happens at earlier ages than you might think.  Take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children to understand a bit more about this experience for hypermobile kids.

Then there is pain.  Some hypermobile kids experience pain from small and large injuries.  They are more likely to be bruised,  more likely to fall and bump into things, and more likely to report what pediatricians may call “growing pains”.  Sometimes the pain is the pull on weak ligaments and tight muscles as bones grow, but sometimes it isn’t.  Soreness and pain lead some kids right to the couch.  After a while, a child may not even complain, especially if the discomfort doesn’t end.  Imagine having a lingering headache for days.  You just go on with life.  These kids are often called lazy, when in truth they are sore and exhausted after activities that don’t even register as tiring for other children their age.

How can you tell the difference between behaviors from ADHD and those related to hypermobiilty?  I think I may have an idea.

After a hypermobile child is given effective and consistent postural support, sensory processing treatment, is allowed to rest before becoming exhausted (even if they say they are fine), and any pain issues are fully addressed, only then can you assess for attentional or emotional problems.  Some days I feel like I am living in a version of “The Elephant and the Six Blind Men”, in which psychiatrists, psychologists and pediatricians are all saying that they see issues with sensory tolerance, movement, attention, pain and social development, but none of them see the whole picture.

Occupational therapists with both physical medicine and sensory processing training are skilled at developing programs for postural control and energy conservation, as well as adapting activities for improved functioning.  They are capable of discussing pain symptoms with pediatricians and other health professionals.

I think that many children are being criticized for being lazy or unmotivated, and diagnosed as lacking attentional skills when the real cause of their behaviors is right under our noses.  It is time to give these kids a chance to escape a label they may not have.

 

Share Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue? with your therapist and see what reactions you receive.  The truth is that many kids don’t get a diagnosis as early as possible.  Rare syndromes aren’t the first thing your pediatrician is thinking of, but you can raise the issue if you have more information and feedback.

Looking for more posts on hypermobility?  Check out Should Hypermobile Kids Sit On Therapy Balls For Schoolwork? , Hypermobile Kids, Sleep, And The Hidden Problem With Blankets  and Should Your Hypermobile Child Play Sports? for useful strategies to manage  hypermobility and support both physical health and functional skills.