Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?

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My posts on proprioception and hypermobility have been popular lately, leading me to think that parents (and therapists) want more information on the sensory basis for their children’s struggles, and that often treatment doesn’t include addressing sensory issues. Ehles-Danlos Syndrome is a somewhat rare connective tissue disorder that can create generalized joint hypermobility.  These kids are often diagnosed as having coordination disorder, and their families describe them as “clumsy”.  I see them as having sensory processing issues as well as neuromuscular and orthopedic issues.   Take a look at Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for more on this subject.

There are some caveats in using techniques from sensory integration protocols with this population.  This doesn’t mean “no”; it means think about it first.  The use of the Wilbarger Protocol is one that requires some thought before initiating with EDS kids.

The Wilbarger Protocol:

For those of you who are unfamiliar with the Wilbarger Protocol, it is a common treatment approach for children with sensory sensitivity, sensory discrimination issues and poor sensory modulation.  Created by Patricia Wilbarger, a terrifically talented OTR  who directly trained me as a young therapist, it is a neurologically-informed treatment that can be used quickly for both immediate improvement in sensory processing and long-term alteration in the brain’s ability to use sensory input in movement and state control.  It involves skin brushing and joint compression in a carefully administered method that uses gate theory to assist the nervous system in regulating awareness and arousal.

There have been other protocols for regulation developed over the years, and adaptations to the Wilbarger Protocol have occurred since it’s creation.  But daily and repeated use of brushing the skin and use of joint compression to deliver deep pressure input (to inhibit light touch registration and enhance proprioceptive discrimination) are the cornerstones of treatment delivery.

Adapting the Protocol for Ehlers-Danlos Syndrome

Since the Wilbarger Protocol was not created to treat EDS, I am recommending that therapists and parents consider adapting it to protect the joints and skin while still gaining benefit from this technique:

  • Reconsider using the brush.  Although the dual-treatment of brushing and joint compression makes this technique a powerful approach, kids with EDS often have skin that is more fragile than average.  It can bruise and tear more easily, especially with the vascular or classic EDS subtypes.  Small children will be brushed repeatedly over the same skin area, increasing the risk of shear, abrasion and bruising.  Children (and adults) with EDS will have skin reactions far in excess of the amount of pressure applied.  This is related to the assumption that the connective tissue that makes up skin and blood vessels is either weaker or thinner than typical children.  Go with the joint compression component alone, and see if you get a clinically valid result without the risk of skin damage.
  • Make sure that you are well-trained in the positioning and administration of joint compression.  I have taken joint mobilization training courses, as well as having a licenses in massage therapy and occupational therapy.  Being able to feel joint position and alignment is absolutely key when children have loose joints, so use this technique with care.  Avoid painful joints, and limit repetition to the shortest amount needed to see a clinically meaningful response.
  •  Train parents extremely well before recommending home use.  Most parents can learn this technique with the right explanation and some practice.   If a parent seems unable to perform joint compression correctly, reconsider a home program.  This has only happened once in my career.  A mom was unable to perceive the amount of force she was using.  She admitted that this had been an issue for her since childhood.  We moved on to other treatment choices.

The true skill of a therapist is the ability to offer the just-right challenge to each child, based on a therapist’s observations, assessment and knowledge base.  I believe that there are many kids with EDS that could benefit from the Wilbarger Protocol when it is effectively adapted to their needs.

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Teach Utensil Grasp and Control…Without the Food!

Therapro has just published my latest guest post! There are some situations that almost require occupational therapists to separate mealtime from utensil manipulation, at least at the earliest stages.  Check out my post Teaching Utensil Use Outside of the Mealtime Experience to find out if your child or client would benefit from this approach!

If you haven’t already read this very popular post I wrote earlier, make learning to use utensils an opportunity to bond emotionally,  take the pressure of self-feeding off the table and help an avoidant child engage in food play with Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child.

Therapro has been one of my go-to sources for quality therapy equipment for years.  Take the time to review their catalog online and explore their unique bowls, plates and utensils that can help children with developmental delays achieve independence in self-feeding.

Why Gifted Preschoolers Should Be Taught Handwriting Early (And With The Best Strategies!)

 

 

guillaume-de-germain-329206Gifted children are identified by their asynchronous development.   The three year-old that can read, the two year-old that can play a song on the piano after hearing it once at music class, the four year-old that can complete his sister’s math homework…from second grade! These children have one or more advanced areas of skill that classify them as gifted.  One of the skills that rarely emerges early and advanced in the gifted population is handwriting.  More often, gifted children have problems with handwriting. Some are just sloppy, some produce illegible products even after trying their best.

A few theories exist to explain this phenomenon:  gifted children are more concerned with expression and ignore handwriting lessons, their typical motor development doesn’t keep up with their advanced cognitive skill progression and they give up, or perhaps a gifted student with poor handwriting has an undiagnosed motor and learning disabilities.

I am going to suggest an additional explanation:  gifted children are not given effective early pre-writing instruction and are often taught to write using strategies that create confusion, boredom or frustration, turning a fast learner into an underachiever.  Gifted kids like novelty, complexity and intensity.  Tracing a dotted-line “A” over and over isn’t any of those things.  Gifted children often remain so focused on their passions that it is easier to let them go and shine in their chosen areas than to make handwriting fun and appealing.

Yes, it is true that children with advanced cognitive skills could have average or below-average motor skills that don’t allow them to independently write a complex original story.  Writing details down may take too long for their quick minds, or they need to use letters they don’t yet have the skills to execute.  A child with an amazing imagination and vocabulary may find standard writing drills dull in comparison to the creative process.  Gifted children may even be averse to the unavoidable failure inherent in practice that leads to mastery.

What can be done?

  • Good pre-writing instruction is essential to build the foundational motor control and spatial skills.  This includes teaching grasp rather than waiting for it to develop, purposely building two-handed coordination and drawing into play,  and using other pre-writing tasks such as mazes, puzzles and tracing/dot-to-dot (not for letters, for drawing).  See Why Dot-To-Dot Letter Practice Slows Down Writing Speed and Legibility to understand why dots aren’t a great strategy for any child.  Learning to draw balloons, birthday cakes and Christmas trees is fun.  It is also a great way to practice writing the curves and intersecting angles that letters require.
  • Use multi-sensory, multi-media methods to develop pre-writing and handwriting skills.  Many gifted children love sensory-based experiences.  Their natural drive for intensity and complexity can be satisfied when letters are made from pretzel sticks or Play-Dough.
  • Create a fun, open environment for learning, in which challenge is expected and success is both celebrated and beside the point.  If children are taught that they are expected to know all the answers since they are gifted, exploration can be suppressed.  If they learn that failure is anticipated and shame-free, it allows them to try again and invent solutions to the problems they face.
  • Harness the skills a gifted child possesses to advance their handwriting development.  Children that have great spatial awareness notice letter formation similarities and proportion rules.  They transform an “F” into an “E” and chop two vertical lines in half to make an “H”.  Children in love with language can use fun mnemonic devices or little “stories” that help them form letters correctly.  When the letter “S” starts as a mini “C” and then “turns around and goes back home” they remember the formation of this tricky letter more easily than copying or tracing alone.

As an occupational therapist, I use the Learning Without Tears program (formerly Handwriting Without Tears).  The materials are high-quality, the learning progression is developmental and builds one skill on top of the previous skill, and the early levels are more sensory-based than most writing programs.  See Can HWT’s Flip Crayons Transform Pencil Grasp in Preschoolers? and Why Do You Start (Uppercase) Letters at the Top? Speed and Accuracy for some HWT strategies that really work.

If you are the parent of a gifted child, or if you teach gifted preschoolers, please share your best strategies to support handwriting here.!!!

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New Baby? Exhausted? Try The 5 S’s To Pull Things Together

 

 

annie-spratt-178364New parents are often shocked at how tired they are.  After all, newborns don’t DO much.  They eat, sleep, pee and poop, and that is about it.  But they do it around the clock and they aren’t very experienced with any of it.  Dr. Karp’s 5 S’s can help all of you learn more and get some sleep.

Not because the 5 s’s give babies exactly what they had in the womb.  They do, but what swaddling, swinging, sucking, etc provide is a roadmap for how baby nervous systems work.  Once you know that babies need this, not that, you feel more in control of the situation and you can relax.  And babies that have been calmed down faster and more effectively feel that you get them, you really get them.  They sense that their parents can help them better than their aunties and neighbors.  Feeing understood starts here.

 

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When babies stop crying faster sleep an hour or so longer (yes, doing the 5 S’s can do that!) and eat/nurse more easily, life is less exhausting.  Not completely a day at the beach, but not as tough as it was before.  For more information, take a look at Help Your Newborn Adjust to Daycare By Using Happiest Baby on the Block Strategies and Why Some Newborns Look Like They Hate To Be Swaddled.

Wishing all you new parents a wonderful first year!!!

Stop The Whining With The Fast Food Rule

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Whining is a “fingernails on a chalkboard” experience for most adults.  We often give in to a whining child, just to avoid hearing that noise.  Or we explode and scare them (and ourselves) with the anger that whining can trigger.  What can you do?

What would you say if I told you that I use a technique that works more than 50% of the time, and it can work in mere seconds to halt a child in mid-whine? Well, read on and let me tell you the secrets that I learned from Dr. Harvey Karp and his Happiest Toddler on the Block book!

I spend more than 75% of my treatment day as an occupational therapist with children under the age of 6.  That can add up to a lot of whining!  Why?  Not because I am inexperienced, or because I am a pushover.  Anyone that knows me knows that neither statement is true.  It’s because young children may be able to talk, but they aren’t very good communicators.  Being able to express their feelings effectively and negotiate their desires is just beyond their pay grade at this age.  Their default is whining.

Dr. Karp’s Fast Food Rule has made my job so much easier. It makes young children see me as a friend, not just another adult telling them what to do.  This one simple strategy lets kids know that I care about how they feel, but doesn’t suggest that they will get their way with me every time.  In fact, they often find themselves following my directions without fully knowing why they have stopped crying, begging, or pleading with me.

Here is what the FFR entails:

Part 1:  Repeating what you believe is your child’s complaint or desire, using simple words, short phrases and more emotional tone and gestures/facial expression than usual.  You may not know for sure what a very young child wants, but take your best guess.  If you are wrong, you can always give it another try.  The more upset or younger the child, the simpler the wording and the more expressive the tone and gestures.  Why?  Because emotional people don’t hear you well, but they will pick up on your non-verbal cues effectively.  You are trying to convey a simple message:  I understand you.

Part 2:  Only after you see that your child has calmed a bit with the knowledge that they are understood can you then begin to comfort, negotiate, or solve their problem.  Not before. We jump in very early in the interaction to tell them “It’s OK, honey” or “I can’t hear you when you speak to me like that”.  It’s only when they know you have heard THEM that they can listen to YOU.

The importance of being understood by another when you are upset cannot be overstated.  Children need this from us more than we know.  Even young toddlers are aware that they won’t always get what they want, but they need to know that we understand their point of view.  If you do not convey this message, a child will whine, wail or scream to make it clearer to you that they are upset.  That is why telling them that things are fine seems to throw oil on the fire.  They think you don’t get it.

So, help them pull it together by stating their situation (as you perceive it) out loud and using some non-verbal messaging:  I got it.  You want more cookies.  You don’t want to leave the park.  You want Logan’s truck.  Whatever it is, tell them that you understand before you offer a solution, an alternative, or explain why they aren’t getting what they want.  I promise you, it will work more often than it does not, and sometimes it will work so well that you almost cannot believe how simple it was to calm things down.

There is a secret benefit from using the FFR:  your child will gradually become less likely to break out in a whine even when things have gone badly.  After repeated experiences of being understood and treated with respect and firmness, a child will expect that you are the source of solutions instead of a dumping ground for agitation and anger.

 

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Hypermobile Kids, Sleep, And The Hidden Problem With Blankets

 

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Everyone knows that sleep is important.  Research in sleep science (yes, that is a thing) tells us that our brains are working to digest the day’s learning, the immune system is active during sleep, and our bodies are repairing and renewing tissues and organs while we slumber.  As much as we need sleep, kids need it more.  They are building the brains and bodies they will carry into their future.  Children need good quality sleep as much as they need healthy food.

Helping children to sleep well is usually a combination of creating good and consistent bedtime routines, giving them a full day of physical action and warm social interaction, and developing a healthy sleep environment.  This means providing a sleep-positive environment and removing any barriers to sleeping well.  But giving kids the chance to get a good night’s sleep can be harder when a child has hypermobility.

Some of the challenges to sleep are sensory-based, and some are orthopedic.  Here are a few things that make sleep more challenging for these kids:

  • Children with limited proprioception and kinesthesia due to low tone or excessive joint mobility can have difficulty shifting down into a quiet state for sleep.  They spend their day seeking sensory input;  not moving reduces the sensory information that makes them feel calm and organized.  To understand more about the sensory concerns of hypermobility, take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children.
  • Some hypermobile kids have joint or muscle pain that keeps them up or wakes them up.
  • Hypermobile kids can get arms and legs caught in their bedclothes or between crib slats and mattresses.  Any layer can be a potential problem, from the top sheet to the decorative afghan that Granny sent for his birthday.
  • Limbs can slide off the mattress during deep sleep and create strain on ligaments and tendons.   You and I depend on our brain to perceive an awkward position and take corrective action.  The same child who “w” sits and slides off a chair without noticing is not going to wake up when her arm is hanging off the bed during sleep, even though the tissues are stretching beyond their typical range of motion.

Here are some simple strategies that may improve your child’s sleep:

  • Try a duvet or a flannel sheet set to minimize the number of layers of bedclothes.
  • Use a rashguard suit instead of pajamas.  I am particularly fond of the zip-front style so that less force is needed to get arms in and out while dressing.  You can peel it off more easily.  The lycra creates sensory feedback that can support body awareness while keeping them cozy.  An all-in-one suit also gives a bit of support so that limbs don’t easily overstretch.  A little bit of proprioceptive input in a breathable fabric that can also generate a bit of neutral warmth (from body heat) to keep tissues from getting too stiff.
  • Avoid footie sleepers that are too short.  Too-small footie sleepers create compressive forces on joints and could even encourage spinal torque.  Hypermobile kids will be the last ones to complain since they often don’t feel discomfort right away.  My preference is not to use these sleepers at all with hypermobile kids or kids with low tone.  See the next suggestion for another reason why I feel this way.
  • Make them take off those footie sleepers when they wake up and walk around.  As fabric twists and children stand/walk on the fabric, not the soles, it creates a safety risk underfoot.  Less sensory feedback and slippery soles!!  Get them dressed once they wake up.
  • Carefully consider weighted blankets.  Originally sold for kids on the autistic spectrum and for kids with sensory processing disorders without muscle or orthopedic issues, these blankets have become popular with other groups.  The biggest concern is that placing weight (meaning force) on an unstable joint over time without conscious awareness or adult control is a safety issue.  It is possible to create ligament injury or even subluxation of a joint, depending on limb position and the amount of force placed on a joint.  Talk this one over with your OTR or PT before you order one of these blankets.
  • Consider aromatherapy, gentle massage, white noise machines, and other gentler sleep strategies to help your child sleep well.  For kids who sleep well but wake up stiff, learn how to use gentle massage and possibly heat to help them get going.
  • Try K-Taping or Hip Helpers for stability.  Kineseotape stays on for days and gives joint support and sensory input while your child sleeps.  Hip Helpers are snug lycra bike shorts that limit extreme hip abduction for the littlest kids  (legs rotate out to the sides excessively).  They gently help your child align hip joints correctly.  As with weighted blankets, I strongly recommend consulting with your therapists to learn about how to use both of these strategies.  When used incorrectly, both can create more problems for your child.

 

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Potty Training Boys: Do You Teach Standing Up Or Sitting Down?

 

darran-shen-477150.jpgTraining children for bladder control before bowel control is often easier for quite a few reasons:  More frequent bathroom trips = more opportunities for success, digestion and diet issues don’t stall success,  and urination is usually a painless, phobia-free, and quick experience.  In general, families that hire me as a consultant are encouraged to consider bladder training to be the first mountain to conquer.

But should little boys sit or stand to do the deal?  After a child has been sitting on the potty, understands it’s use, and has consistent success, I will encourage parents to have their sons stand to urinate.  But it isn’t as simple as that.  There are pros and cons.

First, the pros of standing to urinate:

  • little boys have probably seen their brothers, cousins and dad use the toilet, and most children want to copy their same-gender parent.  This is often more motivation to become independent in the bathroom.
  • young children may be a little more mindful of why they are standing in front of the toilet.  Children that are sitting have a harder time seeing what is happening and can get distracted. I know, I know, even the “big boys” can have terrible aim.  But children need all the help they can get to stay focused.
  • improving aim is motivation to use the toilet.  I wrote a blog post on using targets to teach boys to improve their accuracy and build interest in toileting.Piddlers Make Potty Training Fun!  These really work!

And now the cons:

  • See the item about distractibility under “pros”.  Some boys are so distracted that sitting on an toilet seat insert with a splash guard is the only way to prevent spraying the bathroom and any supervising adult.
  • Some children will start out urinating and begin to have a bowel movement concurrently.  Oops!  These children often have issues with low tone or digestive problems, and cannot “hold it” long enough to finish urinating and then sit on the toilet to have a bowel movement.  If they have an accident, it could be very upsetting to them and make them less eager to be fully trained.
  • Children with low muscle tone or postural stability issues may need to sit to achieve a safe and stable position.  No one can eliminate when they are unsteady or fearful.

Some children are vocal and clearly tell you what they want to do and why.  Some cannot or will not communicate, but you can figure out what they are thinking.  Some need to be encouraged to give standing a try.  If your son was initially interested and now has lost some of his enthusiasm and is still sitting to urinate, try telling him that it is time to stand like the big guys and see if you can regain some of your momentum in toilet training!

For more information on toilet training children with low muscle tone, check out my other posts such as   Low Tone and Toilet Training: The 4 Types of Training Readiness   as well as my useful e-book.  Here is a post that explains why this unique book will help you move forward with training right away! The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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