Monthly Archives: April 2019

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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Why Parents Used The Fisher-Price Rock and Play Sleeper: Desperation and Confusion

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As a Happiest Baby on the Block (HBOTB) educator, I was thrilled to hear about the product’s recall, and horrified at the number of deaths attributed to this device.  The media spent a lot of time pointing out that the company’s marketing included clear messaging that suggested that children could sleep in it, in defiance of the national pediatrician’s association’s recommendations that children sleep on a flat surface without padding or bedding until they are old enough to move to prevent suffocation.

Many of the stories online made it sound like the company must be out of their mind, or the parents must be idiots.  I don’t think that either thing is true.   I think I know why well-meaning parents listened to the printing on the box and not the hurried message/tri-fold handout from their child’s doctor:  they simply want some sleep.  They see how calm their child is in this device, and don’t know what else to do to get some peace and quiet.  Fisher-Price knew what I know; parents can be desperate and want a convenient solution to their struggles.  Their packaging mentioned both the warning and showed sleeping children in the device.

Babies are amazing, but babies don’t sleep through the night right away.  They often don'[t sleep through the night in the first 6 months.  That is a long time for parents to deal with their own chronic sleeplessness.  Many families are dual-earners, and many parents today are over 30.  Losing a night’s sleep at 23 and losing a night’s sleep at 39 are completely different.  One makes you sluggish.  The other makes you feel like you were hit by a truck.  Have that happen to you for a week, and you cannot handle screaming or exhaustion very well.  Really.  Do that for 6 months, and you might agree to almost anything anyone suggests to get a little more sleep.  When your child is so peaceful in that carrier or infant positioner, you may not want to risk waking them.  Do it anyway.  And learn how to get them back to sleep more easily.

One reason why I became a HBOTB educator was my sympathy for the parents I worked with as an occupational therapist.  These are kind people, intelligent people, but people who were not given great strategies by their pediatricians.  They were told what to do, but not HOW to do it.  Pediatricians aren’t given the time to walk parents through good techniques, even if they know them.  And a lot don’t know how to calm babies.  They know how to cure babies.  Dr. Karp’s techniques tell parents  how.

Since the arrival of the SNOO, things have become a bit simpler.  The need for education hasn’t ended, because unless you intend to spend the first 12 weeks at home each and every day, parents need to know how to calm their babies without a device.  Read Why You Still Need the 5S’s, Even If You Bought a SNOO   if you would like to know more about how HBOTB will save your sanity during the day.

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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.  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.
  • 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.

For more information and ideas about helping your child with hypermobility, read Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and Should Your Hypermobile Child Play Sports?

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Afraid to Toilet Train? Prepare Your Child… and Prepare Yourself

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I spend an extra 30 minutes at the end of a session this week helping a mom build her courage and confidence so that she felt ready to start toilet training soon.  Her child is over 3, has sensory and motor issues, but shows tons of signs for readiness:  dry diapers for increasingly long periods, tells adults when he needs to “go”, able to manage clothing, etc.  He also has no confidence in his abilities, rarely likes change or challenge, and is super-sensitive to altering routines and using new environments.  This isn’t going to be seamless.

It isn’t clear who is the more prepared individual, but I think it could be the child.

This mom read my favorite marketplace book on training “Oh Crap”, and she needs to re-read it with an eye to the many ways in which her child fits the picture of a child that could NEVER be fully ready to train.  This species is so averse to novelty and challenge that no treat or toy is a great enough reward.  Nothing is more frightening to them than failure, and you simply cannot miss the diaper.  It is familiar, fail-proof, and allows children to never have to monitor their body signals or stop watching Paw Patrol to go to the potty.  Ever.

This child is likely to be experiencing the normal sensations of fullness and pressure (as the bladder and rectum fill) as uncomfortable and a little scary.  This interoceptive input can be one that children are sensitive to in the same way that the find seams on clothes or lying down for a diaper change unpleasant.  He requires a lot of support to tolerate and process tactile input and vestibular input, so it isn’t exactly surprising that he would find interoceptive sensation difficult to handle.  Adding a new routine for dealing with elimination, placing it in a room he rarely uses (the bathroom) and being old enough to know that he could “fail” and old enough to absorb outside comments about being “dirty” is more than enough to make this harder than it should be.

My suggestions to this mom included:

  • Adding more vocabulary to her discussions about toilet training.  Speaking about the feelings of pressure and fullness, the actions of pushing the poop out gently, and cleaning/wiping with clear messaging that this is a learning experience that nobody does perfectly.  Hearing that his parents had “accidents” when they were little, and that every child will have accidents, well, this could really help both of them.
  • Dressing him lightly, or choosing to go naked or just underpants (I like two layers of training pants if they still fit his tiny heine!) so that there are fewer barriers to making it to the potty means she may need to shop for training garments.
  • Planning the environment if she is going to let him go naked.  All living events except sleeping need to happen in places where accidents can be cleaned up easily.  She isn’t averse to staining the carpet, but I assured her that her child knows not to spill things on that carpet.  He is too old not to interpret soiling it as a failure.  When she runs to clean it up, he will feel badly.  If she doesn’t have to rush and shows no stress, he will relax about the almost inevitable accident.  He NEEDS  the confidence to move forward.
  • Consider more media about toileting and the arc of learning.  Most children don’t like to talk about things that distress them.  But they LOVE to read about others who are going through the same things.  I suggested that she weave in some new books about characters who are learning to use the toilet, and add comments about their feelings as they learn.  This would include how excited and proud the character is.  Proud can be a new word in his vocabulary!

 

Training a child that has low tone?  I wrote an e-book for you!

The Practical Guide to Toilet Training Your Child With Low Muscle Tone is filled with preparation ideas, strategies to address the common issues of sensory processing limitations and the behavioral effects of low tone, and even includes a guide to building readiness instead of waiting for it to arrive!  You can find it on my website Tranquil Babies,  on Amazon  , and on a terrific site for occupational therapy materials, Your Therapy Source

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