Tag Archives: occupational therapy

Parents of Young Hypermobile Children Need A Guide To Navigate Everyday Life

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My first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, was a wonderful experience to write and share.  The number of daily hits on one of my most popular blog posts  Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children helped me figure out what my next e-book topic should be.

Hypermobility is a symptom that affects almost every aspect of a family’s life.  Unlike autism or cerebral palsy, online resources for parents are so limited and generic that it was obvious that what was needed was solid practical information using everyday language.  Being empowered starts with knowledge and confidence.

The result?  My new e-book:  The JointSmart Child:  Living and Thriving With Hypermobility.  Volume One:  The Early Years.

What makes this book unique?

  • This manual explains how and why joint instability creates challenges in the simplest tasks of everyday life.
  • The sensory and behavioral consequences of hypermobility aren’t ignored; they are fully examined, and strategies to manage them are discussed in detail.
  • Busy parents can quickly spot the chapter that answers their questions by reading the short summaries at the beginning and end of each chapter.
  • This book emphasizes practical solutions over theories and medical jargon.
  • Parents learn how to create greater safety at home and in the community.
  • The appendices are forms that parents can use to improve communication with babysitters, family, teachers and doctors.

Who should read this book?

  1. Parents of hypermobile children ages 0-6, or children functioning in this developmental range.
  2. Therapists looking for new ideas for treatment or home programs.
  3. New therapists, or therapists who are entering pediatrics from another area of practice.
  4. Special educators, and educators that have hypermobile children mainstreamed into their classroom.

Looking for a preview?  Here is a sample from Chapter Three:  Positioning and Seating:

Some Basic Principles of Positioning:

Therapists learn the basics of positioning in school, and take advanced certification courses to be able to evaluate and prescribe equipment for their clients.  Parents can learn the basics too, and I feel strongly that it is essential to impart at least some of this information to every caregiver I meet.  A child’s therapists can help parents learn to use the equipment they have and help them select new equipment for their home.  The following principle are the easiest and most important principles of positioning for parents to learn:

  • The simplest rule I teach is “If it looks bad, it probably IS bad.”  Even without knowing the principles of positioning, or knowing what to do to fix things, parents can see that their child looks awkward or unsteady.  Once they recognize that their child isn’t in a stable or aligned position, they can try to improve the situation.  If they don’t know what to do, they can ask their child’s therapist for their professional advice.
  • The visual target is to achieve symmetrical alignment: a position in which a straight line is drawn through the center of a child”s face, down thorough the center of their chest and through the center of their pelvis.  Another visual target is to see that the natural curves of the spine (based on age) are supported.  Children will move out of alignment of course, but they should start form this symmetrical position.  Good movements occurs around this centered position.
  • Good positioning allows a child a balance of support and mobility.  Adults need to provide enough support, but also want to allow as much independent movement as possible.
  • The beginning of positioning is to achieve a stable pelvis.  Without a stable pelvis, stability at the feet, shoulders and head will be more difficult to achieve.  This can be accomplished by a combination of a waist or seatbelt, a cushion, and placing a child’s feet flat on a stable surface.
  • Anticipate the effects of activity and fatigue on positioning.  A child’s posture will shift as they move around in a chair, and this will make it harder for them to maintain a stable position.
  • Once a child is positioned as well as possible, monitor and adjust their position as needed.  Children aren’t crockpots; it isn’t possible to “set it and forget it.”  A child that is leaning too far to the side or too far forward, or whose hips have slid forward toward the front of the seat, isn’t necessarily tired.  They may simple need repositioning.
  • Equipment needs can change over time, even if a child is in a therapeutic seating system.  Children row physically and develop new skills that create new positioning needs.  If a child is unable to achieve a reasonable level of postural stability, they may need adjustments or new equipment.  This isn’t a failure; positioning hypermobile children is a fluid experience.

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years is now available on Amazon.com.  

 

Already bought the book?  Please share your comments and suggestions for the next two books!  Volume Two will address the challenges of raising the school-aged child, and Volume Three focuses on the tween, teen, and young adult with hypermobility!

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Why Injuries to Hypermobile Joints Hurt Twice

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My new e-book, The JointSmart Child: Living and Thriving With Hypermobility, Volume I, is just about ready to launch.  One of the book’s major themes is that safety awareness is something that parents need to actively teach hypermobile young children.  Of course, physical and occupational therapists need to educate their parents first.  And they shouldn’t wait until things go off the rails to do so.

Hypermobile kids end up falling, tripping, and dropping things so often that most therapists have the “safety talk” with their parents on a regular basis.  What they don’t speak about as often are the long-term physical, emotional and social impacts of those injuries.

Yes, injuries have more than immediate physical effects on hypermobile kids.  Here is how this plays out:

  • The loss of mobility or function after an injury creates more dependency in a little person who is either striving for freedom or unsure that they want to be independent.  Needing to be carried, dressed or assisted with toileting when they were previously independent can alter a child’s motivation to the point where they may lose their enthusiasm for autonomy.  A child can decide that they would rather use the stroller than walk around the zoo or the mall.  They may avoid activities where they were injured, or fear going to therapy sessions.
  • A parent’s fear of a repeated injury can be perceived by a child as a message that the world is not a safe place, or that they aren’t capable in the world.  Instilling anxiety in a young child accidentally is all too easy.  A fearful look or a gasp may be all it takes.  Children look to adults to tell them about the world, and they don’t always parse our responses.  There is a name for fear of movement, whether it is fear of falling, pain or injury: kineseophobia.  This is rarely discussed, but the real-life impact can be significant.
  • Repeated injuries produce cumulative damage.  Even without a genetic connective tissue disorder such as Ehlers-Danlos syndrome, the ligaments, tendons, skin and joint capsules of hypermobile children don’t bounce back perfectly from repeated damage.  In fact, a cascade of problems can result.  Greaster instability in one area can create spasm and more force on another region.  Increased use of one limb can produce an overuse injury in the originally non-injured limb.  The choice to move less or restrict a child’s activity level can produce unwanted sedentary behavior such as a demand for more screen time or overeating.
  • Being seen as “clumsy” or “careless” rather than hypermobile can affect a child’s self-image long after childhood is over.  Hypermobile kids grow up, but they don’t easily forget the names they were called or how they were described by others.  With or without a diagnosis, children are aware of how other people view them.  The exasperated look on a parent’s face when a child lands on the pavement isn’t ignored even if nothing is said.

In my new book, I provide parents with a roadmap for daily life that supports healthy movement and ADL independence while weaving in safety awareness.  Hypermobility has wide-reaching affects on young children, but it doesn’t have to be one major problem after another.  Practical strategies, combined with more understanding of the condition, regardless of the diagnosis, can make life joyful and full for every child!

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How To Correctly Reposition Your Child’s Legs When They “W-Sit”

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Hypermobile kids, kids with low muscle tone, and kids with sensory processing issues are champion “W-sitters”.  What’s that?  If your child sits with their thighs rotated inward, knees bent, and their feet rotated so their toes point outward, you have a W-sitter.   This sitting pattern isn’t abnormal if it is only one of many positions your child uses while playing on the floor.  It really isn’t.  But if it is the ONLY  way they like to sit, the only way they are able to sit without falling over, or the only way they are comfortable sitting on the floor, you may have a problem.

What kind of problems?

Persistent W-sitting can tighten hip and leg muscles to the point at which walking is negatively affected.  It also overstretches and discourages the development of the muscles needed for good walking and postural control.  It can loosen important hip and knee ligaments that are also essential for walking.  W-sitting inhibits active trunk muscle activation (that core thing again!).  We all know that having a weak core is a problem for good quality movement.  And finally…poor gait quality is a safety issue.  More falls, more tripping, more leaning on things and people.  Read Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing for a deeper dive into safety awareness.

There is a sensory impact as well.

What isn’t always so obvious is that having a weak core and only using a sitting position that locks the lower body into a collapsed position tells a sensory-sensitive kid that their brain is telling the truth; they are vulnerable and it is not that easy or safe to move.  This inhibits movement exploration and opportunities to build balance, strength, etc.

So….What is the best way to reposition your child’s legs?

  1. Don’t pull their feet out and around.  If your kid has issues such as hypermobility, you may be contributing to more joint problems if you place force on delicate tissue.
  2. You can demonstrate alternate sitting patterns and see if they will copy your position.  This requires the language, cognitive and motor skills to do so, and the willingness to comply.  Young children and special needs kids may not be able to follow your directions.  Some parents tell their child “Legs out” or “Fix your feet” and they slowly learn what that means.
  3. Try practicing regularly and rewarding other sitting patterns.  Praise will work for some kids but not all kids.  You know if you have a child that will take the bait.
  4. Tilt their trunk to one side, and wait for their brain to elicit a “righting reaction”; kicking the opposite leg out and forward.  Repeat on the other side.  A child with CP may not be able to overcome their spasticity to perform this, but you certainly can try it with any child.  If your child fights you on this, tip them to the side faster so that the reflexive response overs before they realize it, and use all your Happiest Toddler techniques Use The Fast Food Rule For Better Attunement With Your Child to decrease the oppositional behavior.
  5. Think of other more dynamic positions for play.  Read Three Ways To Reduce W-Sitting (And Why It Matters)

Does Your Child “Trace” the Room’s Perimeter or Hate Big Spaces? There is a Sensory-Based Explanation

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Space; the final frontier?

When you see it, it looks like Helen Keller crossed with a Roomba.  A child enters a space, even a familiar space, and runs the perimeter without stopping to play or examine things.  They may trace the room with their fingers, or repeat this process many times before they “land” and engage in some kind of purposeful activity.  If they get upset or challenged, they may resume this behavior.

One explanation for this behavior is that it is a solution to spatial processing difficulties.  When a typical child over the age of, let’s say 14 months, enters a room, they use their visual and auditory skills to tell them about the shape, height, and contents of the room.  As we mature, we use higher-order sensory input to inform our awareness and thinking.  We use sound in particular to tell us about the space to our sides and behind us that we cannot see.  Kids with ASD and SPD are stuck using immature types of information, and need to use them more often and more intensely to get the same knowledge.

How does this feel for them? Think of Notre Dame cathedral (before that awful fire).  The soaring ceilings and the long aisles create an other-worldly feeling you cannot escape.  Your brain knows you are not in your living room, or even in your own place of worship back home.  The medieval architects knew this too.  That was exactly the effect their were aiming for.  To set you back on your heels with the wonders of G-d.  How?  By making the spatial characteristics very unfamiliar and difficult to square with everyday experience.  To have you feel smaller and less in control in the presence of the almighty.

Now imagine that every space you inhabit gives you that feeling.  You enter a room and your eyes go everywhere.  You want to walk around to give yourself more information about where you are.  You don’t, but your nervous system is suggesting it.  You feel off balance and vulnerable.  Sound familiar?

What can you do?  Treating spatial processing issues isn’t easy.  Addressing limitations in vestibular and visual processing can really help, but I think that sound-based treatments are some of the easiest and most effective.  I use Quickshifts effectively to address spatial processing issues  Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation.  Of course, it is best to address all the sensory processing issues any child has to get the best results.  You want to cement in the skills of better sensory processing by achieving good functioning in multiple situations.  But spatial processing problems have to be addressed to achieve a calmer and more organized state.  You want every child to feel safe and supported wherever they go!

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Effective sensory processing treatment helps kids feel safe in big spaces

The Subtle Ways Chronic Medical Care Affects Infant and Toddler Development

 

hannah-tasker-333889-unsplashThe good news:  more and more extremely premature and medically complex babies are surviving.  The bad news: there is a cost to the extended and complex treatment that saves their lives and helps them to thrive.  This post is an effort to put out in the open what pediatric therapists know only too well goes on after the medical crisis (or crises) are over.   Only when you know what you are seeing can you change it.

This is not an exhaustive list; it is a list of the major complications of a complex medical course of treatment on behavior:

  1. Your child is likely aware that their coughing, crying, or other reactions will stop parents and even some medical professionals in their tracks.  I have had kids who didn’t get what they wanted learn to hold their breath until they turned blue.  If you have worked in medicine, you should know that if a child does this and faints, they will immediately begin breathing again.  It doesn’t scare me.  But it can terrify family members, teachers, and other caregivers.  They will stop whatever they were doing and may give in to any demand right away.  Many kids learn who will take the bait impressively fast.  It is very damaging to a child’s relationships and destroys their ability to handle frustration.
  2. Invasive treatments have been done while distracting your child and often without involving your child in any way.  This has taught your child not to attend to an adult’s actions or words in the same way a typically developing child will do naturally.  Since learning language and fine motor skills are highly dependent on observation, these skills are directly impacted by this consequence.  This pattern can be reversed, but it is highly resistant and has to be addressed directly.  Don’t think it will simply go away as your child recovers medically.  It doesn’t.  As soon as your child can be involved in self-care any way (holding a diaper, etc) you need to engage your chid and demonstrate the expectation that they respond and interact to the degree that they can manage.  All the time.
  3. Typical toddler attitudes are ignored because “He has been through so much already”  If your child is kicking you while you change his diaper ( a real question to me by a private duty nurse) then you react the same way you would if your child didn’t have a G-tube or a tracheostomy.  The answer is “NO; we don’t kick in this house”.  You don’t get into why, or what is bothering them right away.  The immediate answer is “no kicking”.  Not now, not ever.  Aggression isn’t unusual or abnormal, but it has to be addressed.  With understanding and as little anger as you can manage as your beloved child is aiming for your face with his foot.  The parents may be experiencing their own PTSD Can Your Pediatric Patient’s Parents Have PTSD? so be aware that their reactions may be coming from a place of untreated trauma as well.
  4. Children who are unable to speak to engage you or able to move around their home will come up with other methods to gain and hold your attention.  Some children throw things they don’t want and HOPE that you make it into a big deal.  Or they throw to gain attention when they should be using eye contact, vocalization or signing.  They wanted your attention, and they got it.  Without speaking, signing or any other appropriate method of communication.  This is not play, this is not healthy interaction.  This is atypical past 10-12 months, and should be dealt with by ignoring or removing the items, and teaching “all done” or “no” in whatever method the child can use.  And then teaching the correct methods of gaining attention and rewarding it immediately.  The biggest roadblock is that if one caregiver takes the “throwing” bait, the child will dig in and keep using that method.  Adults have to act as team managers, and if they fail, the behavior keeps on going.
  5. Children can request being carried when they don’t need the assistance, but they want the attention.  This can delay their advancement of mobility skills.  One of my clients has learned which adults will hold his hand even though he can walk unaided.  He likes the attention.  The clinic PT doesn’t know this is happening, even though the family brings him to therapy.  Like a game of telephone, each caregiver assumes that the child needs the help he is requesting.  He is not developing confidence in his own home, which should be the first place to feel safe and independent.  He depends on adults to feel safe.  Oops.

 

In many ways, my job as an OTR is to alter some of these behaviors to allow normal development to take place.  Long after those medical crises are terrible memories, the consequences of those days, weeks, months and sometimes years can have significant effects on learning and independence.

Looking for more ideas to help children grow and develop?  Read Need to Support A Child’s Independence? Offer to Help Them! and The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem.  Do you have issues with your child’s siblings?  Read Are Your Other Children Resentful of Your Special Needs Child?

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Why Is The Wilbarger Protocol So Hard To Get Right?

 

michael-mims-134037-unsplashThe Wilbarger Protocol has been a staple of therapeutic treatment of sensory processing disorder for decades.  I will reveal my age, and admit that I learned directly from Pat Wilbarger.  She was an amazing teacher and a highly skilled clinician to see in action.  But I have lost count of the number of times parents have shown me how they have been instructed to administer deep pressure brushing and joint compression, and I had to decide exactly how to respond in a professional manner.  My initial internal reaction is often something akin to “STOP!”

So many parents have been incorrectly taught.  They are wondering why this technique hasn’t worked very well for their child.  Internet-savvy parents have consulted “Dr. Google” and heard both positive and critical remarks about the Wilbarger Protocol from other parents.  They are discouraged; concerned that their child is too impaired for it to work, or they are just not coordinated enough to be successful.

Well, I can tell them that the Wilbarger Protocol won’t work well if you don’t do it right.  And you won’t do it right if you weren’t shown correctly.  I suspect that, like a child’s game of “telephone”, their former therapist learned the method from her supervisor, and her supervisor learned the technique from HER boss or teacher.  And THAT therapist learned from her clinical director.  On and on, until there is no understanding of the concepts that form the basis for the technique, such as Gate Theory, or that Pat left the cranial compressions behind in the early to mid-90’s due to the risk of cervical injury.

This technique isn’t easy to do on toddlers or children with ASD.  Being comfortable with  manual treatment helps.  Understanding what not to do helps.  Knowing how to create a receptive state in a special needs child helps.  It takes a level of confidence, experience, and the ability to understand how to adapt it to the specific client without losing the benefit we are seeking:  neuromodulation.  It is possible to do it wrong and unfortunately increase sensory sensitivity or put a child into overarousal.  It is also possible to create joint or tissue damage (likely small, but still possible) with too-vigorous force.

Pat used to have her teaching assistants assess every participant in her training courses to ensure that therapists left knowing what to do and what not to do.  She couldn’t control what happened in anyone’s clinic or school.  If therapists or parents find that they aren’t getting the desired results from this treatment technique, I would encourage them to do some research and find older therapists that may have had direct contact with the inventor of this protocol, or at least a therapist that learned from someone that had the good fortune to learn directly from Pat Wilbarger.

Looking for more information about the Wilbarger Protocol?  Read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for some methods to adapt this brilliant technique for children with connective tissue disorders.

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Sensory Stimulation is not Sensory Treatment

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I thought that I might never hear it again, but there it was.  Another parent telling me that a member of her child’s treatment team had placed her hands in a rice-and-bean bin.  “Why?” I asked.  “She said it was sensory.” was the response.  This particular child has no aversions to touch, and no sensory-seeking behaviors either.  Her aversion to movement out of a vertical head position keeps her in my sessions, and her postural instability and hypermobility will keep her in PT for a while. But unless she is swishing around in that box while on a balance board or while she is sitting on a therapy ball (BTW…not) it isn’t therapy.   I struggle to see the therapeutic benefit for her specifically.  It is sensory play, but it isn’t therapy.

It seems that OTs got so good at being known for sensory-based interventions and fun activities, that it appears that engaging in sensory play is therapy.

Let me be clear:  if your child is demonstrating sensory processing issues, random sensory input will not help them any more than random vitamin use will address scurvy or random exercises will tone your belly.

Sensory processing treatment is based on assessment.  Real assessment.  A treatment plan is developed using an understanding of the way individual sensory modalities and combinations of modalities are neurologically and psychologically interpreted (remember, mind-body connection!)  It is delivered in a specific intensity, duration, location and/or position, and in a particular sequence.  I know it LOOKS like I am playing, and the child is playing, but this is therapy.  In the same way that a PT creates an exercise program or a psychotherapist guides a patient through recalling and processing trauma, I have a plan, know my tools, and I adjust activities on the fly to help a child build skills.

I never want to make other professionals look bad in front of a parent.  That’s not right.  I ended up making a suggestion that the therapist could use that would be actually therapeutic.  Some day I hope to finish my next e-book, the one on hypermobility, and hope that the information will expand the understanding of what OT is and is not.  It is absolutely not playing in sensory bins….

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