Tag Archives: Ehlers Danlos Syndrome

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 see how cold the snow is outside! 

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.    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 ProblemShould Your Hypermobile Child Play Sports? 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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Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues

 

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It is graduation time here in the U.S.  Kids (and parents) are thinking about the future.  But when your teen has chronic health conditions, the future can be uncertain and the decisions more complicated.  I know that the saying “Do what you love and you won’t have to work another day of your life” is very popular, but the truth is that career planning is much more than finding your passions.

Here are a few things to think about:

  1. Every teen needs to learn about their interests and their skills.  Regardless of medical concerns or limitations, picking a career path that doesn’t match any strong interests is a plan almost certain to fail.  There is a medical reason to pick a career that they don’t hate;  if the greatest part of the day or week will require them to do tasks they dislike or find boring, they are at risk for stress-related flares in their condition. Similar concerns exist when a career choice doesn’t match their skills.  Loving what you do but not having the right skills or talents is very frustrating.  It could be harder to get and keep a job without good skills.  Help your teen identify what interests them about life and school, and where they truly shine.  If your teen hasn’t had a chance to observe people working in the profession(s) they find interesting, make sure that they do so before they invest time and money in training.
  2. Look at potential careers with an eye to benefits, job demands and scheduling flexibility.  Most adults with chronic health conditions want to be employed, and every one of them will need health insurance.  In the U.S., that means finding a job that provides insurance or purchasing individual coverage after aging out of family policy coverage options at age 26.  Generous sick days and personal days are perks every employee desires, but for people with a chronic illness, those benefits allow for medical treatments and rest during periods of symptom flares.  Think carefully about the working environments common to a particular career path.  Some careers will have a high-stress pathway (i.e. trial attorney) but also less demanding types of work within the profession.  Other careers require a high degree of physical stamina and skill.  These may not be the jobs you would think of right away as physically demanding.  For example, preschool teachers and hairdressers are on their feet most of the day, every day!
  3. Career planning and completing required training while living with a chronic and possibly progressive condition may require outside support.  Teens that have been able to perform in high school without any compensations such as 504 plans may need more help in college.  Higher education often expects more independence and more mobility (think large campuses and internships) from students.  Most universities have an office for disabled students. Their staff will work with students with disabilities to create a plan, but it is the student’s responsibility to inform the office of specific needs and to develop strategies with the staff and faculty.  If your teen doesn’t want to be “identified” as disabled, this is the time to talk about being proactive and positive.  Finding assistance and receiving effective support could make all the difference.
  4. Explore local and online support groups.   Adults with your teen’s medical issues may have useful strategies or tales of caution that will help you develop a plan or expose problems that you haven’t anticipated.  Remember that personal stories are just that: personal.  Experiences are quite variable and it is difficult or impossible to  predict another person’s path.

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Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?

enis-yavuz-387710-unsplashThe short answer:  some of these kids, some of the time.  The long answer:  To use K-tape effectively, you need to understand the mechanics of tape on the skin and underlying tissues, how connective tissue disorders disrupt skin healing, how to minimize skin shear and inflammation, and that only using one type of tape may not be enough.

I love to use taping for kids with hypermobility, but kids with connective tissue disorders such as Ehlers-Danlos syndrome aren’t always able to tolerate taping without some significant adaptations.  Children that were preemies often have the same issues that make taping more challenging.  Fragile skin, immune system reactions, etc. will require adaptations and alterations to standard taping procedures and protocols.  But it doesn’t mean an automatic “no”!

Here are my clinical suggestions to make K-taping more successful for kids with connective tissue distorders:

  1. Very few children with connective tissue disorders are able to communicate discomfort clearly. Their hypermobility creates limitations in proprioceptive and kinesthetic awareness.  Children of all ages with poor proprioceptive discrimination have a sensory deficit that directly reduces their feedback for taping.   Therapists have to be very skilled at observation and clinical judgement.  A good therapist will carefully listen to a parent’s descriptions of movement, skin conditions and complaints to hear clues that should guide your taping.
  2. Assume significant skin sensitivity and fragility.  If a child sails through your test tape period, don’t assume that you can use regular taping procedures and protocols.  Always use a test tape, and consider doing multiple test tapes in different locations and with different levels of tension.  Paper-off tension is highly recommended in treatment, and so is caution with taping protocols that add significant skin shear.  Those include placing the tissue on stretch as you apply the tape, and protocols in which rotary force is exerted (such as spiral patterns around limbs).  Because skin recovery may be impaired, skin tolerance can deteriorate after repeated taping.  Use the most conservative treatment plan, even if you are getting good results.  Slow and steady is better for everyone.
  3. Expect to take taping breaks and shorten the amount of time tape stays on the skin. These kids should receive longer periods without tape.  This allows any micro-damage to be repaired.  Once the tape has lost the majority of it’s elastic properties, it is less beneficial and becomes more of a risk for skin integrity.  Instruct parents to trim the tape or remove it completely when the edges start to catch on clothing.  The effect is constant shear on the skin next to the loose edge.  This is irritating for all kids, but it can create significant inflammation for kids with CTD’s.  Try taping another location and returning to taping after a substantial break.  Children with connective tissue disorders usually have more than one area of instability that could benefit from taping.
  4. Use pediatric tape and pediatric protocols well into childhood and perhaps beyond.  I use the Milk of Magnesia barrier technique with all children under 3, and with all children with diagnosed or suspected connective tissue disorders.  I am also a big fan of PerformTex’ pediatric tape.  Their adhesive seems to be to be less intense than ROC Rx tape, and significantly less adhesive than regular tape.  The cure monkeys and flowers don’t hurt!  I am awaiting a shipment of Kineseotex’ Light Touch tape, which has an ultra-gentle adhesive.  Once I started using pediatric tape, I haven’t looked back.  No parent wants to see their child’s skin inflamed, and no therapist wants to strain their client’s trust by appearing to be unconcerned about skin integrity and pain.
  5. Expect that some children truly cannot tolerate taping, and move on.  Good therapists have many different ways to make a difference in a child’s life, and taping may be tolerated better as a child grows up.  We can never predict the clinical course of a connective tissue disorder with certainty, so don’t give up, but don’t become rigid in your treatment planning either.

Looking for more information on treating hypermobility and hypermobility syndromes? Check out How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children.  I am working on an e-book series for parents and therapists of kids with hypermobility.  Check back here soon to see when and where it is available!

 

My e-book on potty training, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, is a great reference for therapists and a helpful resource for families.  Many of our hypermobile preschoolers are still in pull-ups because no one knows how to make it easier.  My book has readiness checklists and equipment assessment guides that can help kids move forward with training immediately!  Visit my website to purchase my book at tranquil babies, or go to Amazon , or visit Your Therapy Source, a wonderful site for therapy materials.

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Can Hypermobility Cause Speech Problems?

 

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As a pediatric OT, many of my clients have speech and feeding problems that are attributed to low muscle tone.  Very often, that is where assessment ends.  Perhaps it shouldn’t.  Joint hypermobility can create issues such as dysarthria, disfluency and poor voice control.  It isn’t only about muscles and muscle coordination.  Being able to identify all the causes of speech delays and difficulties means better treatment and better results.

I have had the privilege to know a handful of master speech pathologists whose manual evaluation skills are amazing.  These clinicians are capable of identifying joint laxity and poor tissue integrity (which contribute to injury, weakness and instability) as well as identifying low muscle tone, sensory processing issues and dyspraxia.  They can assess whole-body stability and control instead of ending their assessment at the neck.

It is more difficult to clearly differentiate low muscle tone from hypermobile joints in young children.  Assessing the youngest clients that cannot be interviewed and do not follow instructions carefully (or at all!)  is a challenge.  Many times we are forced to rely on observation and history as much as we use responses from direct interaction with a child.  In truth, laxity and low tone often co-exist.  Lax joints create overstretched or poorly aligned muscles that don’t contract effectively.  Low muscle tone doesn’t support joints effectively to achieve and maintain stability, creating a risk for overstretching ligaments and injuring both tendons and joint capsules.  Kids who start out able to speak intelligibly can fatigue by the end of a sentence.  A vicious cycle ensues, creating more weakness, instability and more difficulties with motor control.

Some children that are diagnosed with flaccid dysarthria, poor suck/swallow/breathe synchrony, phonological issues and poor respiratory control may be diagnosed later in life (sometimes decades later) as having Ehlers-Danlos Syndrome or generalized benign joint hypermobility syndrome.   They often drop the final sounds in a word, or their voice fades away at the end of a sentence. These kids might avoid reading or speaking front of the class when older.  This isn’t social anxiety or an attitude problem.  They are struggling to achieve and maintain the carefully graded control needed for these speech skills.

You may notice a breathy-ness to their voice that makes them sound more like their grandparents than their peers.  Children that avoid running in sports like soccer or hockey aren’t always unable to continue because they are globally fatigued or in pain.    Being unable to stabilize their trunk results in inefficient muscular recruitment and limited grading of breath.  Ask any runner or singer and they will tell you what that means: game over.

If your child is struggling with these issues and isn’t receiving speech therapy, now may be the time to explore it.  A PROMPT-certified therapist may be especially helpful, as the treatment uses tactile and proprioceptive cues to learn the oral control needed for speech.  Your PT or OT can also address the breath control strategies, but learning to use them in speech often requires the training of a speech language pathologist.  You and your child may be relieved to learn that there is effective therapy out there!

Looking for more information on hypermobility?   Take a look at Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior ,  Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?and Should Your Hypermobile Child Play Sports? for more strategies to improve daily life!

Is your child struggling with toilet training?  I wrote an e-book for you!  The Practical Guide to Toilet Training Your Child With Low Tone is available on Amazon and Your Therapy Source.  I looked far and wide for resources to help the families I work with as an OT.  There wasn’t anything out there that explained why kids and parents find this skill so hard to achieve, so I had to do something to help the situation!  I give you both a readiness checklist and practical ways to develop readiness instead of waiting for it.  Without forcing, begging, or criticizing your child!  Learn all the things you can do right now to make your child more successful and reduce your own stress and anxiety about potty training.  Read more about my book here: The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

 

 

Hypermobile Toddlers: It’s What Not To Do That Matters Most

 

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Do you pick up your toddler and feel that shoulder or those wrist bones moving a lot under your touch?  Does your child do a “downward dog” and her elbows look like they are bending backward?  Does it seem that his ankles are rolling over toward the floor when he stands up?  That is hypermobility, or excessive joint movement.

Barring direct injury to a joint, ligament laxity and/or low muscle tone are the usual culprits that create hypermobility.  This can be noticed in one joint, a few, or in many joints throughout the body.  While some excessive flexibility is quite normal for kids, other children are very, very flexible.  This isn’t usually painful for the youngest children, and may never create pain for your child at any point in their lifetime.  That doesn’t mean that you should ignore it.  Hypermobility rarely goes away, even though it often decreases a bit with age in some children.  It can be managed effectively with good OT and PT treatment.   And what you avoid doing at this early stage can prevent accidental joint injury and teach good habits that last a lifetime.

  1. Avoid over-stretching joints, and I mean all of them.  This means that you pick a child up with your hands on their ribcage and under their hips, not by their arms or wrists.  Instruct your babysitter and your daycare providers, demonstrating clearly to illustrate the moves you’d prefer them to use. Don’t just tell them over the phone or in a text.  Your child’s perception of pain is not always accurate when joint sensory aren’t stimulated (how many times have they smacked into something hard and not cried at all?) so you will always want to use a lift that produces the least amount of force on the most vulnerable joints.  Yes, ribs can be dislocated too, but not nearly as easily as shoulders, elbows or wrists.  For all but the most vulnerable children, simply changing to this lift instead of pulling on a limb is a safe bet.
  2. Actively discourage sitting, lying or leaning on joints that bend backward.  This includes “W” sitting.   I have lost count of the number of toddlers I see who lean on the BACK  of their hands in sitting or lying on their stomach.  This is too much stretch for those ligaments.  Don’t sit idly by.  Teach them how to position their joints.  If they ask why, explaining that it will cause a “booboo” inside their wrist or arm should be enough.  If they persist, think of another position all together.  Sitting on a little bench instead of the floor, perhaps?
  3. Monitor and respect fatigue.  Once the muscles surrounding a loose joint have fatigued and don’t support it, that joint is more vulnerable to injury.  Ask your child to change her position or her activity before she is completely exhausted.  This doesn’t necessarily mean stopping the fun, just altering it.  But sometimes it does mean a full-on break.  If she balks, sweeten the deal and offer something desirable while you explain that her knees or her wrists need to take a rest.  They are tired.  They may not want to rest either, but it is their rest time.  Toddlers can relate.

Although we as therapists will be big players in your child’s development, parents are and always will be the single greatest force in shaping a child’s behavior and outlook.  It is possible to raise a hypermobile child that is active, happy, and aware of their body in a nonjudgmental way.    It starts with parents understanding these simple concepts and acting on them in daily activities.

Wondering about your child’s speech and feeding development?  Take a look at Can Hypermobility Cause Speech Problems? to learn more about the effects of hypermobility on communication and oral motor skills.

Looking for information on toilet training your child with Ehlers Danlos syndrome, generalized ligament laxity, or low muscle tone?  My e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, gives you detailed strategies for success, not philosophy or blanket statements.  I include readiness checklists, discuss issues that derail training such as constipation, and explain the sensory, motor, and social/emotional components of training children that struggle to gain the awareness and stability needed to get the job done.  You will start making progress right away!

My book is available on my website tranquil babies, at Amazon, and at yourtherapysource.com.

Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility?

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An adaptive grasp pattern for the hypermobile child

As a pediatric OT, I am often asked to assess and teach proper pencil grasp.  Once you start looking, you see a lot of interesting patterns out there.  When a child clearly has low muscle tone and/or hypermobile joints, the question of what to do about an atypical pencil grasp used to puzzle me.  I could spend weeks, or even months, teaching positioning and developing hand strength in a child, only to find that they simply couldn’t alter their grasp while writing.

Now I triage grasp issues by determining if it is a problem for the child now or in the future.  An atypical pencil grasp can be an acceptable functional compensation or it can be a contributor to later joint damage.  What’s the difference?  You have to know a bit about hand anatomy and function, how to adapt activities, and how to assess the ergonomics of writing.

Children aren’t aware of most of the problems that low tone and/or hypermobility create when they hold a pencil.  They just want to create. The effects of their unique physiology often results in grasp patterns that cause parents pain just to observe; fingers twisted around the shaft of the pencil, thumb joints bent backward, etc.  The kids aren’t usually complaining; their lack of sensory receptor firing at the joints and muscles gives them no clues to the strain they are inducing.  None.  Occasionally children will complain of muscular fatigue or pain after writing a few paragraphs or completing an art project.  For the most part, they are unconcerned and unaware of what is really going on.  For a more detailed explanation, please check out Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children,

Do these funny grasp patterns reduce legibility?  Only sometimes.  There are atypical grasp patterns that are good choices for children with hypermobility.  One is to place the shaft of the pencil directly between the index and third finger, and allow the thumb to support the side of the pencil.  The knuckle joints of those fingers provide more stability than the standard tripod grasp.  This grasp pattern is illustrated at the beginning of this post.

I allow preschoolers who need to keep more than 3 fingers on the shaft of the pencil to do so, and wait to see what happens as they develop more overall hand control.  This is especially beneficial for the child with sensory discrimination issues or joint hypermobility.  Forcing a tripod grip isn’t always in their best interest now or for the future.

What can be done?  My favorite method to help children with low tone or hypermobility is to look at the problem with both a wide-angle lens and with targeted analysis.  I think about changing overall posture, altering any and all equipment, and examine the mechanics of movement.

These kids often need better proximal support, meaning that changing their chairs and writing/drawing surfaces could result in less strain in their hands and wrists.  To understand one way your whole body is involved in writing, take a look at Better Posture and More Legible Writing With A “Helper Hand” Using writing tools that reduce joint force by enlarging the shaft diameter or changing out lead for gel pens or markers is another strategy.  Take a look at Strengthening A Child’s Pencil Grasp: Three Easy Methods That Work  and Problems With Handwriting? You Need The Best Eraser for more good ideas that actually make a difference.  I will teach kids how to pace themselves to reduce force and fatigue throughout their bodies.  A little awareness can be a big help.  Finally, I may suggest a pencil grip, but I assess this carefully in order to avoid forcing a typical grasp on a child that can’t manage it due to instability or profound weakness.  I might start with the Grotto Grip The Pencil Grip That Strengthens Your Child’s Fingers As They Write., in hopes that we can strengthen and train a stable grip, but I will move on quickly if it doesn’t work within a month or causes more difficulty/pain in writing.

Wondering if there are issues beyond writing that your OT can address?  Check out Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and Teach Kids With EDS and Low Tone: Don’t Hold It In! for more information.

Atypical pencil grasp can be a problem, but it can also be a solution to a child who is struggling to write and draw in school.  If you have concerns, ask your OT to evaluate and explore the issue this week!

 

Hypermobility in Young Children: When Flexibility Isn’t Functional

Your grandma would have called it being ” double jointed”.   Your mom might mention that she was the most flexible person in every yoga class she attended.  But when extra joint motion reduces your child’s performance or creates pain, parents get concerned.  Sometimes pediatricians and orthopedists do not.

Why would that happen?  A measure of flexibility is considered medically within the norm for children and teens.  Doctors often have no experience with rehab professionals, so they can’t share other resources with parents.  This can mask some significant issues with mild to moderate hypermobility in children.  Parents leave the doctor’s office without a diagnosis or advice, even in the face of their child’s discomfort or their struggles with handwriting or recurrent sports injuries.  Who takes hypermobility seriously?  Your child’s OT and PT.

Therapists are the specialists who analyze functional performance and create effective strategies to improve stability and independence.  I will give a shout-out to orthotists, physiatrists and osteopaths for solutions such as splints and prolotherapy.  Their role is essential but limited, especially with younger children. Nobody is going to issue a hand splint or inject the ligaments of a child under 5 unless a child’s condition is becoming very poor very quickly.  Adaptations, movement education and physical treatments are better tolerated and result in more functional gains for most middle and moderately involved hypermobile children.  Take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children to understand more about what an OT can do to help your child.

Low tech doesn’t mean low quality or low results.  I have done short consults with children that involve only adaptations to sitting and pencil choice for handwriting, with a little ergonomic advice and education of healthy pacing of tasks thrown in.  All together, we manage to extend the amount of time a child can write without pain.  Going full-tilt paperless is possible when pain is extreme, but it involves getting the teachers and the district involved.  Not only is that time-consuming and difficult to coordinate, it is overkill for those mildly involved kids who don’t want to stand out.  Almost nothing is worse in middle school than appearing “different”.  A good OT and a good PT can help a child prevent future problems, make current ones evaporate, or minimize a child’s dependence and pain.

Hypermobile kids are often bright and resourceful, and once they learn basic principles of ergonomics and joint protection, the older children can solve some of their own problems.  For every child that is determined to force their body to comply with their will to compete without adaptation, I meet many kids that understand that well-planned movements are smarter and give them less pain with more capability.  But they have to have the knowledge in order to use it.  Therapists give them that power.

Parents:  please feel free to comment and share all your great solutions for your child with hypermobility, so that we all can learn from YOU!

Is your hypermobile child also struggling with toilet training or incontinence?  Check out Low Tone and Toilet Training: Learning to Hold It In Long Enough to Make It to The Potty  to gain an understanding of how motor and sensory issues contribute to this problem, and how you can help your child today!