Category Archives: hypermobility

A Simple Strategy To Improve Your Child’s Posture In A Tripp Trapp or Special Tomato Chair

 

Therapists often recommend these well-designed seats for kids that need solid foot support, but even the best hip and chest strapping doesn’t always mean that a child is actively using their feet for postural control.

As a young therapist, I used tape, foam, and towel rolls everywhere, as if I was creating a modern sculpture.  For the most part, all I got for my effort was frustration.  Food and force tend to make short work of the most ingenious wedges and supports on a chair used for feeding.  Then I got smarter and decided to make this a lot easier on everyone.

I wanted to share my easiest strategy for helping children place their feet on a foot plate and keep them there:  shoes!

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The little guy in the “before” photo has generalized low tone and hypermobility.  His pelvis is reasonably stable using the existing straps on the chair, and he is able to reach forward to finger-feed, partially activating his trunk and hips.  But those feet just tapped away, and his legs extended at the knee through most of the meal.  He is too little to respond to any verbal prompts for posture but not addicted to gaining sensory input though his feet.  He is there for the food!

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Non-skid soles, and totally stylish, too!

Just putting on his tiny boat shoes gives him some “grip” on the foot plate, and he stayed in this position for the rest of the meal with our repositioning!  He still has to develop some hip control so his knees don’t move laterally as he reaches forward.  This is an easy hack to help him get some distal stability without constantly touching and repositioning him.  Kids really start to hate all our manhandling after a while.

Hope this gives parents and therapists an idea that requires very little effort and can  deliver results immediately!

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Should Hypermobile Kids Sit On Therapy Balls For Schoolwork?

 

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They are everywhere; colorful therapy balls have migrated from the clinic to the classroom.  You can buy a base or a whole chair with a ball attached.  But do kids with hypermobility benefit from using them, or will they create more problems than they solve?

Hypermobility in infants and very young children is common, and decreases over time in typical children.  And then there are the kids with low muscle tone or connective tissue disorders.  These kids do not commonly see a decrease in their loose joints over time.  They do become stronger, and they can become more stable and steady.  But they can still display considerable flexibility over time.

In fact, hypermobility can increase with each overstretched ligament or damaged joint.  It is as simple as basic construction principles:  when the foundation is shaky, the structures around the foundation receive some of the forces from action and movement that the foundation should have absorbed.  A child who has an unstable pelvis will experience more forces in their upper spine and in their knees as the muscles try to compensate for the extra movement at the pelvis.  Over-stretching, excessive tightening of the wrong structures, and damage to joint surfaces are the result of excessive force absorption.

In this situation, another symptom becomes more and more obvious:  fatigue.  Well-aligned joints are designed to decrease effort during movement, like a Swiss clock.  Damaged joints and joints that don’t glide correctly due to lax ligaments and weak muscles require more effort to do the same job.  Hence fatigue sets in just from the extra effort required.  This is true even if the connective tissue that creates muscles and ligaments is of good quality.  Some genetic connective tissue disorders are characterized by incomplete or faulty construction of connective tissue.  These children are starting out with a foundation that is unstable and weak before any forces have been applied.  They will become weak and tired more quickly than a child with the same level of instability but with stronger connective tissue.

While sitting on a therapy ball-chair, the expectation is that the dynamic movement of the ball will activate core musculature and provide a dynamic position that helps a child  achieve core stability.  Sounds great!  But…this assumes that the physical structures needed are capable of doing so, and that the child is also able to write or play, using his arms and hands effectively at the same time.  It also assumes that the child will notice when his alignment has decreased and will take action to prevent compensation.  I think that is a lot to ask of most kids, even most teens.  They just want to get their homework done and over.

Based on all of these concerns, I recommend that children with hypermobility be closely evaluated and monitored by a therapist before they use a therapy ball set-up as a chair for play or schoolwork.  The extra effort to sustain and achieve good alignment is likely to be difficult to manage as they concentrate on a task like handwriting.  The risk is that they fatigue the supporting musculature, recruit compensatory muscles for support, and place more strain on joints and ligaments without awareness.  Yes, I am saying that there is a chance that the use of these chairs with some kids can make things worse.

A better idea for kids with hypermobility?  A more supportive seating set-up.  Reduce the physical demands while your child is working, and leave exercising on a ball to therapy sessions and your therapy home program.  Therapists are skilled at designing programs that target specific muscles to develop balanced control around a joint while protecting it at the same time.  They are also great at assessing work stations and chairs to determine which designs will give your child support and dynamic positioning at the same time without excessive fatigue.  This is one of my favorite tasks as an OT.  I know that a well-designed seating set-up will provide a pay-off every time a child sits down for a meal, plays at a table, or does their homework.  Sometimes it means that joint protection and support have to be blanked with dynamic control, and my training helps families to parse it out for the best result possible for their child.

Looking for more ideas with your hypermobile child?  Check out Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Should Hypermobile Kids Use Backpacks? to start the school year.

I am working on a new e-book on hyper mobility, and welcome parents and therapists to suggest topics that are rarely discussed online or in the clinic.  My goal is to create a book that helps kids thrive!

 

 

Halloween Fun When Kids Don’t or Can’t Trick-Or-Treat

 

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Kids big and little are anticipating Halloween, but this holiday isn’t always enjoyable for children with ASD, SPD, anxiety or motor issues.  Putting on a costume can be difficult for some kids to tolerate and nearly impossible for kids that have mobility issues.  Kids with endurance and mobility issues struggle to walk up to a front door and ring the bell, but they don’t want to be carried “like a baby”.  Even seeing other children in costume or decorations in their own home can be difficult for children that are very sensitive.

What begins as a celebration and an adventure becomes a minefield.  And yet, your child may be invited to participate in many Halloween events.  You may want to have a party in your own home.  Your child may even beg to be involved in things you know they will end up hating, not realizing the challenges ahead.  Inclusion is a murky pond for some kids.

Perhaps it doesn’t have to be so difficult.  Here are a few ideas that could make this holiday less stressful and more inclusive:

  • Costumes can be anything you want them to be.  Purchased costumes can be adapted or altered for comfort and tolerance.  If you have a child with tactile sensitivity, choosing the fabric that is less irritating is worth a trip to a brick-and-mortar store, or ordering multiple sets online with easy returns.  Instead of an eye patch for a pirate, you can use makeup to create one.  Princess skirts and Batman pants can be shortened to prevent tripping.  They can be bought larger and altered to allow for braces and for sitting in a wheelchair.  Hats and headpieces are optional, and can also be switched out for more wearable choices.  They can be purchased separately or by combining two costumes.  A comfortable costume is fun; an awkward costume will cost you in time, pain and struggle much more than you can imagine.
  • Trick-or-treat is over-rated.  Choose people your child knows, a neighborhood that has flat, accessible front steps, or even an apartment building with an elevator.  The experience of trick-or-treat doesn’t have to be a marathon to be fun: in fact, “fun” is the opposite of dragging stressed children around from house to house.  Remember that children with sensory modulation issues will start out excited and happy and become overwhelmed quickly.  Monitoring and planning for this helps both of you have fun that doesn’t end badly.
  • Many children with sensitivities need to practice wearing their costume until it becomes familiar.  They may protest and initially refuse, but some practice can really help them.  Make the run-through more fun by pairing it with something like watching a halloween movie at home or putting up decorations.  The child that refuses to wear a costume can become the child who doesn’t want to take it off!
  • Choose your home decorations with your child’s tolerance in mind.  It isn’t always about whether they are scary or not, it can be the brightness, the amount of movement or the sounds that overwhelm children.  You won’t always know what will be too much, so prepare yourself and the rest of the family that you may have to substitute/remove/repurpose things that don’t work out.
  • Do fun events that your child can handle.  Bake cookies, including the buy-and-bake-off cookies that don’t require a lot of effort or time.  The end product can be given to friends and family proudly.  Decorate a Halloween cookie house.  Put up cling-on decorations in windows and storm doors that are easy to remove if they become an issue.  Watch a fun movie at home and invite friends to dress up and come over for the show.

Holidays for kids with special needs take more thought, but they don’t have to be less fun, just a bit different.  The important concept is to consider your child’s needs and aim for the essential feelings of the holiday:  fun, and sharing the fun with others!

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.

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.

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.

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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.

When a hypermobile child is given effective and consistent postural support, 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 problems.  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.

Looking for more posts on hyper mobility?  Check out Should Hypermobile Kids Sit On Therapy Balls For Schoolwork? and Should Hypermobile Kids Use Backpacks? for school-related topics and strategies.

Should Hypermobile Kids Use Backpacks?

 

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Yo! A photo shout-out to my old stomping grounds in Brooklyn! I loved coming to work to see this iconic view!

It is back-to-school season here in the US.  One of the items on many parent’s shopping lists is a new backpack.  But for kids with low muscle tone or hypermobility, backpacks can be more than a way to carry books and water bottles.  They can be a source of pain, headaches, even numbness in hands and fingers.  The important question isn’t how to lighten the load of a heavy backpack.  It is whether these kids should be using them at all.

The standard recommendations from occupational therapists and orthopedists regarding backpacks is simple:  lighten the load, use both straps (select wide straps), and make sure the heaviest items are placed close to the body.  All good suggestions.  But if a child already has pain or weakness around the spine and shoulder joints, less stability and endurance, and less ability to judge posture and force, then the picture changes.  Using a backpack may be a significant physical risk, no matter how well designed or used.

Here are some suggestions that further minimize injury but can be acceptable to older kids who may be sensitive to being perceived as different:

  • Request a set of the heaviest books for home use.  This can be part of an IEP or a 504 plan, or the school may be willing to do so without anything formal on paper.
  • Select the smallest size backpack possible.  Stores like Land’s End and L.L. Bean here in the US are great sources for a variety of backpack sizes.
  •  Have your child use their backpack only for lighter items.  Pick the smallest water bottles and travel sizes of anything they need.  Think “weekend in Paris on a shoestring” not “trekking the Himalayas”.  At least they have a backpack like the other kids.
  • Teach your child to carry their pack in their arms, close to their chest, instead of wearing it.  I know, that sounds weird.  But if it is small, this is the smartest way to carry anything while reducing strain on backs and necks.  And they still have a backpack like the other kids.  A long shot, but some kids can be reminded of how awful neck and back pain really is, and how not being able to sleep or play sports is worse than carrying that pack in their arms.
  • Considering a rolling case?  Not so fast.  The twisting of the back and the use of one arm to drag a rolling case may be worse than using a backpack.  Then there is the lifting and lugging up non-ADA stairs.  Out of the frying pan……

Looking for more information about hypermobility, low tone and back-to-school planning?  Check out Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility? and Great Mechanical Pencils Can Improve Your Child’s Handwriting Skills.  Before you wonder if all that fidgeting and leaning over the desk is a behavior problem, read Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.  There are pencil grips that can really help kids with a weak grasp, so check out The Pencil Grip That Strengthens Your Child’s Fingers As They Write.

 

Prevent Skin Injuries In Kids With Connective Tissue Disorders: Simple Moves To Make Today

Children with EDS and other connective tissue disorders such as joint hyper mobility disorder often have sensitive skin.  Knowing the best ways to care for their skin can prevent a lot of discomfort and even injury.  These kids often develop scars more easily, and injured skin is more vulnerable in general to another injury down the road.  As an OT and massage therapist, I am always mindful of skin issues, but I don’t see a lot of helpful suggestions for parents online, or even useful comments from physicians.  I want to change that today.

  1. Use lotions and sunscreens.  They act as barriers to skin irritation, as long as the ingredients are well-tolerated.  Thicker creams and ointments stay on longer.  Reapplication is key.  It is not “one-and-done” for children with connective tissue disorders.  Some children need more natural ingredients, but you  may find sensitivities to plant-based ingredients too.  Natural substances can be irritants as well.  After all, some plants secrete substances to deter being eaten or attacked!
  2. Preventing scrapes and bruises is always a good idea, but kids will be kids.  Expect that your child will fall and scrape a knee or an elbow.  Have a plan and a tool kit.  I have found that arnica cream works for bruises and bumps, even though it’s effectiveness hasn’t been scientifically proven to everyone.  Bandages should not be wrapped fully around fingers, and a larger bandage that has some stretch will spread the force of the adhesive over a larger area, reducing the pressure.  DO NOT stretch their skin while putting on a bandage.  And remove bandages carefully.  You may even want to use lotion or oil to loosen the adhesive, then wash the area gently to remove any slippery mess.
  3. If your child reacts to an ingredient in a new cream or lotion but you aren’t sure which one, don’t toss the bottle right away.  You may find that your child reacts to the next lotion in the same manner, and you need to compare ingredient lists to help identify the problem.
  4. Hydrate, hydrate, hydrate.  Skin needs water to be healthy, and even more water to heal.  Buy a fun sport bottle, healthy drinks that your child likes, and offer them frequently.
  5. Clothing choice matters.  Think about the effect of tight belts, waistbands, even wristbands on skin. Anything that pulls on skin should be thought out carefully.  This includes shoe straps and buckles.   Scratchy clothing isn’t comfortable, but it can be directly irritating on skin.  That irritation plus pulling on the skin (shearing) sets a child up for injury.
  6. Teach gentle bathing and drying habits.  Patting, not rubbing the skin, and the use of baby washcloths can create less irritation on skin.  Good-bye to loofahs and exfoliation lotions, even if they look like fun. Older girls like to explore and experiment, but these aren’t great choices for them.  Children that know how to care for their skin issues will grow up being confident, not fearful.  Give your child that gift today!

Looking for more information on caring for your child with connective tissue disorders? Check out Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health and Teach Kids With EDS and Low Tone: Don’t Hold It In!

Does your child have toileting issues related to hypermobility?  Read about my book that can help you make progress todayThe Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health

As the OT on a treatment team, I am the ADL (Activities of Daily Living) go-to person.   Why then, do so few parents ask me what ideas I have about ADLs, especially dental care?  Probably because OT as a profession has developed this reputation as either focused on handwriting or sensory processing.  Maximizing overall health and building skills by improving ADLs is often pushed to the side.  Not today.

People with connective tissue disorders have a greater chance of cavities and more serious dental problems.   Knowing what to do for your child and why it is important helps parents make changes in behavior with confidence and clarity.

Here are my suggestions to support a child that has been diagnosed or is suspected of having Ehlers-Danlos hypermobility or any connective tissue disorder:

  1. Teach good dental hygiene habits early.  Why?  Habits, especially early habits, seem to be harder to dislodge as we age.  Good self-care habits can and should last a lifetime.  Automatically brushing and flossing gently twice a day is cheap and easy.  Make it routine, not optional.  I know how this can become a fight for young children.  This is one of those things that is worth standing your ground on and making it fun (or at least easy) for children to do.  Brush together, use brushes and pastes with their favorite characters, pair it with something good like music or right before bedtime stories, but don’t think that dental care isn’t important.
  2. Research on people with typical connective tissue suggests dental care reduces whole-body inflammation.  Inflammation seems to be a huge issue for people with connective tissue problems, and no one needs increased inflammation to add to the challenges they have already.  Enough said.
  3. Tools matter.  Use the softest toothbrushes you can find, and the least abrasive toothpaste that does the job.  Tooth enamel is also made from the same stuff and skin and bone, and so are gums.  Treat them well.  Water-powered picks and battery-operated brushes may be too rough, so if you want to try them, observe the results and be prepared to back off it becomes clear that your child’s tissues can’t handle the stress.  Toothpaste that is appealing will be welcomed.  Taste and even the graphics/characters on the tube could make the difference.  My favorite strategy is to give your child a choice of two.  Not a choice to brush or not.
  4. Think carefully about acidic foods.  Lemonades, orange juice, energy drinks, and those citrus-flavored gummies all deposit acids on teeth that are also mixed with natural or added sugars.  Those sugars become sticky on teeth, giving them more time to irritate gums and soften enamel.  Easy hack?  Drink citrus/acidic drinks with a straw.  Goes to the back of the mouth and down the hatch.  At the very least, drink water after eating or drinking acidic foods to rinse things out.
  5. Baby teeth count.   Because your young child hasn’t lost even one baby tooth, you may think this doesn’t apply to you.  Those permanent teeth are in there, in bud form.  Children can develop cavities in baby teeth as well as permanent teeth.  Gum irritation is no different for young children, and they are less likely to be able to tell you what they are feeling.  Sometimes the only sign of a cavity in a young child is a change in eating habits.  This can be interpreted as pickiness instead of a dental problem.
  6. Consider sealants and fluoride   I know…some people are nervous about the composition of sealants and even fluoride, which has been in the public water system here in the US for a long time.  I would never criticize a parent who opted out of either.  It is a personal decision.  But be aware that they don’t increase tissue irritation, and they protect tender enamel, tooth roots and the surrounding gums.  At least have an open discussion with your pediatric dentist about the pros and cons.  I am mentioning sealants here specifically because some parents aren’t aware that this treatment option can reduce cavity formation and gum deterioration.

Looking for more information about ADLs and hypermobility?  Take a look at Easy Ways to Prevent Skin Injuries and Irritations for Kids With Connective Tissue Disorders and Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child and Low Muscle Tone and Dressing: Easy Solutions to Teach Independence.