Tag Archives: PWS

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!

How To Pick A High Chair For Your Special Needs Child

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My first Early Intervention home visit always involves seeing the child sitting in their high chair.  I learn a few things.  I learn how the child is handled by the parent or caregiver, including whether they use the available strapping to secure them.  Many don’t, and don’t realize that it is part of the problem.  I learn how well the child fits into the chair, and how well the child can balance and reach in this chair.  And I hear about what problems the parent or caregiver is having with using this seating system.

This post is intended to share some of what therapists know about seating, and how to pick a better chair for kids that have challenges.

Every parent reading this post should know that their child’s therapists are their best source for getting the right high chair.  Never consult Dr. Google when you have licensed professionals available.  There is a reason for that license!  The folks you meet online cannot evaluate your child and provide safe recommendations for you.  This includes me; my comments are meant to educate, not prescribe.  That would be unethical and unsafe.

Typical children need a high chair when they can maintain their head balanced in the center and can start reaching and holding a bottle or finger food.  Before that, they use a feeding seat.  Feeding seats are slightly-to-moderately reclined and do the job of a parent cradling a child while feeding.  A child in a feeding seat usually isn’t expected to independently steady their head or hold a bottle. There are usually straps that stabilize a child’s chest and shoulders as well as a strap that stabilizes their pelvis.

Again, not every adult uses these straps correctly to give a young child the best support.  I will always do some education on methods to correctly position and adjust strapping.  The adult’ reaction (relief, curiosity, resistance, disinterest) tells me a great deal about what is coming down the pike.  Some special needs kids will use a feeding chair well past 12 months of age.  The commercially-made feeding chairs aren’t large, so some kids won’t fit  into one much past 18 months.  After that happens, we have to think about either a commercial high chair or adaptive seating.

Commercially-made high chairs in the US are gigantic.  They could hold a 4 year-old! This is always a problem for special needs kids.  Too much room to move in the wrong way isn’t helpful.   These chairs may or may not have chest/shoulder straps, and they may not have an abductor strap (the one between a child’s legs, that prevents them from sliding under the waist belt).  The best chairs have the waist belt low enough that it sits across a child’s lower hips like a car’s seat belt.  This is always preferable to sitting at the bellybutton level.  It provides more stability.

If a special needs child collapses their posture while sitting in a high chair, when I stabilize their hips in a way that doesn’t allow them to collapse, they might complain.  They were allowed to slouch so much that this new position, with appropriate core activation, feels wrong to them.  It can take a while for a child to learn that eating and playing in a chair requires them to use their core.  I allow them to gradually build up their abilities with short periods of eating and playing.  Not every parent is comfortable finding out that they were contributing to core weakness by allowing a collapsed posture.  I don’t add to that feeling; you know more, you do better.  Simple as that. No guilt.

Some providers insist that every child, at every age and stage, have a place to put their feet.  The strongest proponents of this idea are usually not therapists but educators or speech therapists who attended a positioning lecture or inservice.  Occupational therapists know that a child that doesn’t have the hip control and emerging knee and foot control to place weight into their feet will not be able to use their feet to steady their trunk.  They will, however, figure out how to use a footplate incorrectly.  Unless a child is older than 2 and requires lower leg stabilization to avoid tightening their hamstrings (which will derail their positioning) and sliding forward, or to prevent sensory-seeking or ataxic movements, I don’t strap a child’s feet onto a footplate, or even worry about providing a footplate.  A child that is in a feeding chair, or just beginning to use a high chair, isn’t going to use a footplate correctly, and is more likely to use one to ruin previously decent positioning.  A child that is able to bench-sit or is starting to take weight into their feet?  That child can use a footplate to build sitting control.  Here is a post to help you use one well: A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair

Special needs kids that have very limited head and trunk control will often need an adaptive seat that gives them more support.  It can transform them!  More support can allow more freedom, not less.  These chairs are able to be customized, are obtained through DME vendors and can be paid for by insurance or EI.  They are expensive, and considered medical equipment, not chairs.  Parents need instruction in their use to avoid harming a child by too intensive strapping and incorrect adjustments.  But when done right, they can transform a child’s abilities in ways that no commercially-available chair can accomplish.  Giving a child a seating system that frees them to reach and look and eat and communicate is a wonderful feeling.  Those of us that are trained in seating evaluation know that the right chair can build skills, not substitute for them!

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How an Occupational Therapist Can Help The Siblings of Special Needs Children

 

joao-rafael-662575-unsplashThe parent of one of my clients recently returned from a conference related to her youngest child’s genetic disorder, and she told me that the presentation on helping the siblings of special needs kids really only offered one niblet of advice: “Try to give each sibling 10 minutes a day of “just us” time.”

My shoulders, and my heart, fell.  Telling exhausted and worried parents that they need to find more time in their day, every day, isn’t fair.  This mom could have used so many more specific strategies.  She didn’t need another way to feel inadequate to the challenge.  When you have a special needs child, you don’t have extra time.  Some days you aren’t sure you will be able to shower and shampoo.  Even if you could carve out some time by delegating and hiring help, the truth is that living with constant worry about the present and the future, running chronically short on sleep, and perhaps still recovering from a NICU nightmare…this doesn’t lend itself to stellar time management.

There are things that really do help.  Among them are getting the right kind of assistance and support, sharing the knowledge you receive from specialists, and handling everybody’s feelings with compassion (including self-compassion) and honesty.    Occupational therapists are out there helping families deal with life, since we have a solid background in the science of occupational demands and the psychological responses to illness, injury and trauma.  We aren’t psychotherapists, but we study the science of healthy life routines and behaviors.  We also spend a lot of time learning what special needs kids need to thrive, and this includes supporting the siblings and parents of our clients.

Here are some of the things I wish that the presenters had suggested:

  1. Ask your child’s therapists to train more of your family members and caregivers.  This means the partner that isn’t the primary caregiver for a special needs child, but it also could be the grandparent or the babysitter that is the backup emergency caregiver.  There are parents who feel they can never take a break because a half-spa day would mean that no one knows how to prevent their child from falling down the steps or how to know when a child is going in the direction of a meltdown that will derail the day.  If you have a medically fragile child, more people need to know how to keep them safe and healthy.  Your child’s therapists are skilled in providing training in their area of specialization.  They may not offer it to your other family  members unless you ask for it to be done.  This is an investment in your peace of mind.  Make it happen.
  2. Find out if your child’s siblings can enter a therapy session and learn more about how to help or encourage their special needs sibling.  Therapists can teach your child’s siblings, and because they are seen as authorities and not parents, this can work well to foster understanding and interest.  Even preschool kids can learn why the baby isn’t playing with them( but she is watching) and that means “I like you”.  Your therapists are pediatric specialists and are good at helping children of all ages, even if your social needs child is an infant.
  3. Learn methods to spread your warmth and concern without promising time commitments you may not be able to keep.  Something so simple (and explained in more detail in my new book below) is to talk with your child’s siblings about your feelings of anticipation before some fun event, even if it is reading a chapter in Harry Potter.  Telling them, days ahead, that you can’t wait to be with them can feel so good.  Later, you can remind them how much fun you had.  Don’t require them to reciprocate.  You are speaking about your feelings, and if they brush it off then don’t take it personally.  Tweens especially struggle with how to respond.  They still need to hear your warmth.
  4. Express your frustrations honestly, but mindfully, to your child’s siblings.  You will both feel better for it.  You don’t have to wail and keen, and in fact I would discourage that.  You can do that with your partner or your counselor.  But your other children need to know that feeling less than blissfully grateful for their special needs sibling is normal and not shameful.  When some feelings are perceived as unacceptable, they grow in importance and sprout little behavioral problems of their own.  Start by speaking about how tired you are.  It is honest and it is probably already visible.  Mention that you feel both things; love and frustration.  You have to adjust for your other children’s age and emotional tolerance, but I promise you:  this is going to really help.
  5. Ask for help.  And accept it when it is offered.  Some people don’t think they need help, and some don’t think they deserve it.  Some think that it will be seen as weakness or laziness.  Some ask for help and get a casserole instead of babysitting.  Some get advice instead of a casserole.  And some turn down help to avoid feeling as tired and frightened as they really feel deep inside.  Think carefully about how and why you don’t have or accept help, and try doing what doesn’t feel natural or easy.  It could be the best move you make this week.
  6. Reconsider the amount of therapy and tutoring you are doing.  I know; what therapist thinks you can overdo their own treatment?  Me.  Overscheduling therapies can backfire when you, your special needs child, and the rest of your family suffer from the demands.  The time demands, the loss of participation in real life fun like hayrides and playgrounds, etc.  The downtime that any normal person needs and so few parents and special needs kids get.  That affects siblings too, in lost time with parents and exhausted parents trying to wedge “me time” into a free moment.
  7. Make choices about what your priorities are, but allow yourself to have a priority that is not all about your child.  For example, you may have to accept that your house isn’t going to be spotless, and that you may be buying rather than making most of the holiday cookies.  But if making a few batches of a precious family recipe (my best friend from college always makes her Scottish grandmother’s recipe for fruit squares) will make you feel like a million bucks, then go ahead.  Yes, life with a special needs child is different from what you expected.  But you get to have some things from your previous life that bring joy!

I am so excited to report that my newest e-book is finally done!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is designed to empower the parents of hypermobile kids ages 0-5.  There are chapters on picking the right high chair, toys, even pajamas!  One section is just on improving communication with your family (including siblings), teachers, therapists and even doctors.  No other book answers questions that parents have about finding good eating utensils and how to navigate playdates and social events more successfully.

It is available on Amazon as a read-only download and on Your Therapy Source as a printable and click-able download.  Look for more information and a sneak peek at the ways every parent can learn what therapists know about positioning here:The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

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