Tag Archives: Prader-Willi

A Fun Way to Help Kids With Low Tone Stand Up Straight: Stomp-Stomp!

sven-brandsma-gn-I07tTixw-unsplashKids with hypermobility or low tone are often found standing in the most dysfunctional of positions.  Toes pointing in, feet rolled in or out, feet on top of each other: take your pick, because these kids will alternate between these wobbly choices and more!  Read How To Improve Posture In Children With Low Muscle Tone… Without a Fight! and How To Correctly Reposition Your Child’s Legs When They “W-Sit” for some other ideas.  But if you want a quick idea that works to help a child stand up with better control and stability, read on.

Telling a child to “fix your feet” often makes no sense to them, or gets ignored.  Passively repositioning their feet doesn’t teach them anything, and can annoy children who feel that they are being manhandled.

What Can You Do?

Tell Them To “Stomp-Stomp”!

Have the child stomp their feet. Repeat if necessary (or because they want to).   It is simple, you can demonstrate it easily, and most kids grin happily and eagerly copy you.  It is fun to stomp your feet.  It also give kids a chance to move in place, which they often need when socially distancing in a classroom.

 

Why Does It Work?

Because in order to stomp their feet, they have to bring their attention to their feet, shift their weight from one foot to the other in order to lift them up, and their feet almost always end up placed in a more aligned position after stomping.

Many of the goal boxes their PT and your OT have on their list are checked.  Kids don’t feel controlled or criticized.  They are having fun.  Sensory input happens in a fun way, not as an exercise.

Want more help with your child, or help improving treatment plans as a therapist?

I wrote three e-books for you!

The Practical Guide to Toilet Training Your Child With Low Muscle Tone, and the JointSmart Child series on hypermobility are all valuable resources for parents and therapists.  I wrote them because there is simply nothing out there that provides an explanation for why these symptoms make life so difficult for kids (and parents, and teachers, and even therapists!) and what can be done to make everyday life better.

Learn why low tone and hypermobility both create sensory processing issues, and what kinds of social and emotional issues are understood to accompany hypotonia and hypermobility.  When parents see these issues as complex rather than only about strength and stability, they start to feel more empowered and more positive.

Read more about these books, available for purchase on Amazon and Your Therapy Source,  in A Practical Guide to Helping the Hypermobile School-Age Child Succeed, and The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today! as well as The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies

I spent almost 10 years working in adult rehab before I transitioned to pediatrics.  I still teach joint protection, but I teach it differently to kids and their parents.  Kids rarely have JRA or joint damage in general.  What they have in spades are serious degrees of hypermobility.  And the methods to use joint protection strategies so that tissue damage is minimized are different:

Joint protection strategies for hypermobility need to be adapted from those for other disorders, in order to obtain the best results and put clients at low risk of accidental injury.

What’s So Different?

  • Hypermobility can create a different type of joint strain than OA or other joint damage, and different types of soft tissue damage.  Understanding the way placing force on hypermobile joints can damage them is essential to understanding how to guide clients correctly.
  • Excess mobility reduces sensory feedback even when pain isn’t a factor, and can create different types of pain that aren’t as common as in RA, OA, or other joint deformities.  It can also diminish the protective function of pain.  Hypermobile people are often not in enough discomfort when they are overextending their joints.  The next day they find out that they overdid it.  Too late!  This isn’t just about the knees and ankles, guys.  I laugh a little bit , and then groan a lot, when I see articles on proprioceptive loss in hypermobility that focus on only lower extremities.  There are a whole bunch of joints above the waist, guys, and hypermobility affects each and every one of them as well.  Just because you aren’t using them to walk doesn’t mean you don’t need proprioception to use them…..!  I wonder who thinks this is just a lower extremity issue?
  • Hypermobility appears to cause dyspraxia that can “disappear” after a few repetitions, only to reappear after a while or with a new activity.  How can that be?  It can’t.  Praxis doesn’t work like that.  What you are seeing is a lack of sensory feedback that improves with repetition, only to be replaced with a lack of skilled movement from fatigue, or from overuse of force, or pain.  This is really poorly understood by patients, and even by some therapists, but makes perfect sense when fully explored.
  • Hypermobility is seen in a wide range of clients, including younger, more active people who are trying to accomplish skills that are less common in the over-60’s set that we see for OA.  Different goals lead to different needs for joint protection strategies and solutions.
  • Joint damage isn’t evident until long after ligament damage has been done.  People with hypermobility at every age need to protect ligaments, not just joint surfaces.  This isn’t always explained.
  • Their “normal” was never all that normal.  Folks with RA and OA often have years, even decades, of pain-free life to draw on for motor control.  Hypermobility that has been with a person for their entire life deprives them of any memory of what safe, pain-free movement, should feel like.  They are moving “blind” to a degree.  Incorporate this fact into your treatment.
  • So many people are hypermobile in multiple joints that the simple old saws  like “lift with your legs, not your back”  won’t cut it.  Whatever you learned in your CEU course on arthritis won’t be exactly right. Think out of the box.
  • The reasons for hypermobility have to be accounted for.  Genetic disorders like PWS, Down syndrome, and Heritable Disorders of connective Tissue (HDCTs) bring with them other issues like poor skin integrity and autonomic nervous system dysfunction.  Always learn about these before you provide guidance, or you risk harm.  We therapists are in the “do no harm” business, remember?

This fall I may start writing a workbook on addressing the use of joint protection, energy conservation, pacing and task adaptation for hypermobility.  There is certainly nothing out there currently that is useful for either therapists or patients.  If you want or need this book, send me a comment and let me know!!

in the meantime, please read Need a Desk Chair for Your Hypermobile School-Age Child? Check out the Giantex Chair , Hypermobility and Music Lessons: How to Reduce the Pain of Playing and Why Injuries to Hypermobile Joints Hurt Twice

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Better…unless that shoulder and elbow are as hypermobile as that wrist and those MCPs!

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

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

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

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

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

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

Looking for more practical information on raising your hypermobile child?

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 empower parents with useful knowledge written in plain English.  Learn about correct positioning to improve control and how to make your home safer for your child.  Learn how to pick out the best seating, clothing, and even tricycles to maximize independence.

This unique book is available as a read-only download on Amazon or as a click-able and printable e-book on Your Therapy Source.  Don’t have a Kindle?  Don’t worry; Amazon’s downloads are easy to read on any tablet or phone.

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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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Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children

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When most parents think of sensory processing issues, they think of the children who hate clothing tags and gag on textured foods.   Joint hypermobility, regardless of the reason (prematurity, Ehlers-Danlos syndrome, head injury, etc) can result in kids who stumble when they move and wobble when they rest.  They are seen by orthopedists and physical therapists, and told to build up those weak muscles.  Well, hypermobile kids have sensory processing issues too!   And they deserve more effective treatment for these issues than they typically receive.

Lack of joint integrity, especially decreased joint stability, results in a decrease in proprioception and kinesthesia.  These two under-appreciated (and poorly explained) senses tell a child about her body’s positions and movements without the use of vision. The literature out there is sparse.

If you are hoping that a lot of research on this topic exists, and you think your pediatrician understands why your child can’t grasp a pencil but can squeeze the @@#$% out of Play-Doh, good luck.  

Who will believe AND understand you?  Your OT!

Most of the scientific research into proprioception and hypermobility has been done by PTs, and is focused on proprioception in the leg. They are interested in how it affects mobility.

The problems with poor proprioception and kinesthesia go far beyond walking.  Essentially no research has been done on hand function or the practical application of research to living skills of any kind when it comes to hypermobility syndromes and proprioception. But OTs can teach you and your child’s classroom staff about the connections between sensory processing and motor performance.  They can help your child improve skills based on their knowledge of neurology and function.

Here is a simple explanation of how proprioception and kinesthesia affect function.  Consider the process for touch-typing.  Your awareness of your hand’s position while at rest on the home row is proprioception.  You know where your movement starting and end points are via proprioception without looking.  Your awareness of the degree of movement in a joint while you are actively typing is kinesthesia.  Kinesthesia tells you that you just typed a “w” instead of an “e” without having to look at the screen or at your fingers.Your brain “knows”, through learned feedback loops, that your finger movement was too far to the left to type the letter “w”, but far enough to have been a “e”.  Teachers and others call this “muscle memory”, but that is a misnomer.  Muscles have no memory; brains do.  And brains that aren’t getting the right information send out the wrong instructions to muscles.  Oops!

You are able to grade the amount of force on each key because your skin, joint and muscle sensors transmit information about the resistance you meet while pressing down each key.   Your brain compares it previous typing success and the results on the screen, and makes adjustments in fractions of a second. This is sensory processing at work.

Why do children with hypermobility have proprioceptive and kinesthetic processing problems?  Because information from your body is transmitted is through receptors embedded in the tissue within and surrounding the joints.   These receptors respond to muscle and tendon stretch, muscle contraction, and pressure within the joint.   Joint hypermobility creates less stimulation (and thus less accurate information) to these sensory receptors.  Like the game at the carnival, the ball isn’t hit hard enough to ring the bell at the top of the post.  The sensory information coming into the brain is either insufficient or delayed (or both), and therefore the brain’s output of directions to achieve postural stability or dynamic movement is correspondingly poor.

This shows up as a collapsed posture, difficulty quickly changing positions to catch a ball or leap over an obstacle, a heavy-footed gait, and a whole lot of other difficulties.  One of the most common issues are the awkward or extreme positions these kids get into, and sometimes strongly prefer.  They look like they should be in pain, but they aren’t.  Read more about what to do when your child insists on sitting in a position that could harm them in Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way

What should parents be looking for when they wonder if proprioception is affecting their child’s functional performance?

Can children with hypermobility improve their sensory processing and thereby improve the quality of their movements in daily life?  Absolutely.

Because sensory processing is a complex skill, addressing each component of functional performance will give the hypermobile child more skills.  Building muscular strength within a safe range of joint movement is only one aspect of treatment.  If your child is experiencing difficulty in music lessons or when playing sports, please read Should Your Hypermobile Child Play Sports? and  Hypermobility and Music Lessons: How to Reduce the Pain of Playing for some useful ways to think about what you say to your child.  Positioning a child to give them more sensory feedback while in action is essential.  Increasing overall sensory processing by using other sensory input modalities is often ignored but very helpful.  And don’t forget joint protection.  They have to last as long as possible.  Read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies to understand more about this topic.

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I’ll bet that you didn’t think of toileting as a proprioceptive issue.  When thinking about toileting the hypermobile child, the biggest problem is often an interoceptive issue; the kind of proprioception that involves internal organs.  This can make it difficult for hypermobile kids to feel when they need to “go” in time to get to the bathroom, but it can also create retention.  The urge isn’t very powerful for them. Read For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up and Teach Kids With EDS Or Low Tone: Don’t Hold It In!.  And of course, you might want an e- book that will help you with toilet training.  I wrote it for youThe Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

I believe that vestibular input is one of the most powerful but rarely used modalities that can improve the sensory-motor performance of hypermobile children.  They don’t have to demonstrate vestibular processing deficits to benefit from a vestibular program.  The lack of effective sensory processing due to poor proprioceptive registration and discrimination creates problems with balance, and targeted vestibular input is designed to fine-tune the brain’s balance center.  I could link you to scholarly articles on this concept, but you would fall asleep before finishing them.  Trust me, vestibular input can make a difference.  This program can be done without stressing fragile joints, which is often a limitation for the programs that focus too much on muscular strengthening and stabilization activities.

 

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My favorite sensory processing strategy for hypermobile kids?  The use of rhythmic music during movement.

Therapeutic music programs that use the powerful effects of sound on the brain are effective treatments for hypermobile children.  Using sound to improve vestibular processing increases the quality and the speed of response to a loss of balance.  Muscle tone increases in children while they are listening through stimulation of  midbrain centers, and this combo of improved tone and improved vestibular processing helps children improve their safety while moving and even while sitting still. For all of you with kids who fall off chairs while doing nothing, you know what I mean!  I have been trained in the use of Therapeutic Listening through Vital Sounds, and I really like to ease of using Quickshifts.  These short pieces of music that entrains both sides of the brain for activation and attention can really make a change in hypermobile kids.  There are other programs that work well too.  I prefer Vital Links’ Quickshifts for greater options and ease of use in a daily schedule Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation.  You download their free app and buy the music for your phone!  The most significant benefit to adding a listening program to a home program for any child or adult is that there is no stress on connective tissue, even for kids that are in a lot of pain and have very limited mobility.  For kids that have POTS as well as hypermobility, this can be a real advantage.  The middle ear is connected intimately to the vagus nerve, which impacts the autonomic nervous system.  Treatment of the vestibular system can directly improve the ability of the autonomic nervous system, without the risks associated with many activities.

Another technique to enhance sensory processing is the Wilbarger Protocol.  Although not created for children with hypermobility, I believe that it can be altered to address poor proprioceptive discrimination in specific conditions such as EDS.  Read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for a look at how I adapt the protocol with safety in mind.

Kineseotape can be helpful to provide some of the missing proprioceptive information.  When your child has a connective tissue disorder, or is under the age of 3, skin issues complicate taping.  Read Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders? for some suggestions to make this treatment more effective and less risky.

It is difficult to explain to insurers and sometimes even neurologists ( don’t get me started on how hard it is for orthopedists to follow this),  but if you understand the complex processes that support sensory processing, you will be changing the background music in your clinic or your home in order to capitalize on this effect!  I recommend the Vital Links Therapeutic Listening programs for their ease of use and child-friendly music.

Children with hypermobility can benefit from occupational therapy sessions that provide more than a pencil grip and a seat cushion.  All it takes is an appreciation for the sensory effects of hypermobility on function.

Looking for a manual that empowers you and your hypermobile child?

I wrote 2 e-books just for you; one for the smaller kids, and one for the school-age child!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is my e-book for the parents and therapists of young children, packed with strategies that make life easier and build a toddler’s and preschooler’s skills!

It is available as a read-only download on Amazon and as a printable and clickable download at Your Therapy Source    YTS has it bundled with my book on toilet training for a complete set at a discounted price.

Read how my new e-book can help you today:  Parents of Young Hypermobile Children (and Their Therapists) Finally Get Their Empowerment Manual!

Need a book for older kids?  Here you go!

The JointSmart Child:  Living and Thriving with Hypermobility Volume Two:  The School Years is my newest book, filled with even more information for kids ages 6-12.  There are strategies to help them write and play sports with less risk of injury, plus methods to communicate with teachers and doctors to get the services your child needs.  Learn how to pick the best chairs, bikes, even the right clothes to make your child safer and more independent.  Read more about it here:  Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!  It is available on Amazon as a read-only download and as a printable e-book on Your Therapy Source!

Does your hypermobile child also have toileting issues?  

My e-book, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, could help you make progress today!  

The Practical Guide is available on my website, tranquil babies and on Amazon as well as at your therapy source, a great place for therapists and parents to find exercise programs and activities for children.  Read more about it, and hear what parents have to say about this unique e-book:The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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