Category Archives: sensory processing issues

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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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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Holidays Hints For Sensitive Kids

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The stores are full, your inbox is too, and you are wondering how to handle your sensitive child’s reactions to family and school events.  You are not alone.

Everyone knows about the “holiday blues”, where our dreams and expectations come up against real life:  awkward family relationships, conflicting demands on our time and finances, etc.  But for kids with sensory and emotional sensitivity (I don’t see these as always separate issues, by the way), surviving the holiday season can be very difficult indeed.  The excitement and the novelty of the holidays affect them more intensely and are not always welcome additions to their days.   Here are some suggestions to make things better:

  • Think about an event before you commit to it.  The hour of the day, the size and the activity, the duration of the event are all considerations.  You know your child, so you can identify what factors will be the most challenging and what will be easier to handle.  In general, sensitive kids do best with smaller, shorter, quieter and earlier events.
  • Create your own event around your child, and invite others to join in.  When you get to design it, you have more control over how things play out.  Some suggestions would be cookie decorating, visiting a nursery or outdoor holiday display, making wrapping paper with crayons and stickers, and watching a holiday video party.
  • Get your sensory diet activities all set up for an event that you can’t or won’t cancel. Your OT should be able to help you craft a plan to reduce your child’s overall sensitivity with input such as deep pressure, breath control, tactile input, etc.  Just ask.  Most of us would be happy to help you.
  • Do not forget the basics of keeping any child calm at an event:  enough sleep, enough to eat and drink, and being healthy enough to participate.  If your child is ill, tired, or hungry, you need to think carefully about how well he will manage, and make the decision to cancel or alter your plans.   Sometimes the situation isn’t going to be fixed with a few bounces on a therapy ball and some joint compression.  In these situations, your child isn’t any different from any other child.

 

If you are looking for ideas about how to decrease sensitivity, take a look at How to Help Sensitive Kids Handle Greeting People (Including Their Own Parents!) and Sensory Sensitivity In Toddlers: Why Responding Differently to “Yucky!” Will Help Your Child

Holidays can be fun for everyone, including sensitive children.  Plan well, be flexible, and make thoughtful choices that work for your family!

OT and Non-Disabled Gifted Children

I was asked to write another guest post for Therapro, the fantastic OT equipment and materials company that I have been using for clinic and home items for years.  This time the subject is gifted children:  Do Gifted But Non-Disabled Children Need Occupational Therapy?.

The first time you encounter a young gifted child, you may not know that their advanced skills could be contributing to their behavior.  Giftedness is more than advanced intellectual ability, it is a whole-brain difference.  The fMRI studies done in the last decades have proved that to be true.  Gifted kids can have sensory and behavioral responses that suggest they have ADHD, oppositional disorder, or sensory processing disorder.  Some are conclusively “twice-exceptional” , but many are just responding to a brain that is wired for intense and complex interactions.  Schools are geared to routines and benchmarks.  Let the problems commence!

Occupational therapy has always been focused on helping people achieve their best lives.  Having abilities that are on the far sides of any bell curve can make life harder, so my take is that occupational therapists can be helpful to kids that are struggling because of their talents and gifts, not just due to delays and deficits.

Read my post, then tell me about your gifted child, or the gifted children that you have seen as a therapist or teacher.  They really are interesting kids in so many ways!

Make Wiping Your Child’s Nose Easier With Boogie Wipes

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It is cold and flu season here in the states, and I have already seen my share of snot-caked little faces.  Little children get more colds than older kids and adults, and they can turn into an agitated mess when you say “Honey, I need to wipe your nose”.  These wipes are going to make your job as chief booger-wiper a lot easier!

When I first saw Boogie Wipes, I will confess that I thought it was another expensive product to separate first-world parents from their money.  After all, I grew up on dry tissues and I survived.

I was wrong.  These really work.

At first, I thought that the use of moisture was the key to their success.  Not so.  Parents told me that using a regular baby wipe didn’t “do the deal” the way a Boogie Wipe took care of the snot problem and made kids calm down about nose-wiping.  I had to find out what really made this product better.

  1. Boogie Wipes have a few important ingredients that separate them from the standard baby wipes.  The first ingredient is water.  The second ingredient is sodium chloride; good old salt.  Saline is a combo of these two ingredients, and saline softens the gluey crud that is dried-on snot.  It also thins the still-wet snot so you can wipe it away without pressing so hard on tender skin.  Yeah!
  2. The next four ingredients are aloe leaf juice, chamomile flower extract, vitamin E and glycerin.  All gentle and (to most children) non-irritating skin conditioners.  I am a huge fan of Puffs Plus tissues, but these wipes are gentler than my fave tissues.  Children’s skin is so much more delicate than ours, and the ingredients in snot are so irritating.  That is even before it becomes a dried-on coating.  Boogie Wipes leave a thin coating of skin conditioners after you wipe your child’s face.  This coating acts as a slight skin barrier for the next drip of snot.  Brilliant!

The remaining ingredients are preservatives that prevent your open container of Boogie Wipes from becoming a source of germs instead of a source of relief.  I am sure that there are children who react to these preservatives, but I haven’t yet met any families that report problems over the years that this product has been available in NY.

Unless you know your child will react to these specific preservatives, I recommend trying the unscented version first (they come in fresh and lavender scents too) and using them before your child gets a cold.  It is kinder to find out that they are sensitive to any ingredients before their skin is already irritated by all that snot from an illness.  Kids whose skin is going to react will likely do so when well, but their skin can recover from any irritation more quickly when their immune system is not also fighting a bad cold.

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The Boogie folks do sell a saline spray as well as wipes, and I am all for using saline spray to loosen up internal nose crud.  The problem with sprays isn’t that they don’t work.  They do, and they work well.

The problem is that children are naturally avoidant of us sticking things up their noses, and they are really bad at controlling the “sniff” in order to efficiently suck the spray up into their sinuses.  I teach children how to blow their noses and how to handle sprays.  It is part of my job as an OTR.  Not the best part, but nevertheless, a part of teaching ADLs.  I haven’t had much success teaching children under 3 to use nose sprays.  They just get more frightened and upset.  If you have an older child or a child that seems less afraid of nose examinations at the pediatrician, then go ahead and give sprays a try.  It can really loosen up a clogged nose.

Good luck trying Boogie Wipes, or try the generic versions that I am starting to see on store shelves.  Imitation is the sincerest form of flattery, so manufacturers are telling us that they also know that these products really work!

A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair

 

Therapists often recommend these well-designed seats for kids that need solid foot support, but even the best hip and chest strapping doesn’t always mean that a child is actively using their feet for postural control.

As a young therapist, I used tape, foam, and towel rolls everywhere, as if I was creating a modern sculpture.  For the most part, all I got for my effort was frustration.  Food and force tend to make short work of the most ingenious wedges and supports on a chair used for feeding.  Then I got smarter and decided to make this a lot easier on everyone.

I wanted to share my easiest strategy for helping children place their feet on a foot plate and keep them there:  shoes!

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The little guy in the “before” photo has generalized low tone and hypermobility.  His pelvis is reasonably stable using the existing straps on the chair, and he is able to reach forward to finger-feed, partially activating his trunk and hip musculature.  But those feet just tapped away on the footplate, and his legs remained extended at the knee through most of the meal.  He is too little to respond to any verbal prompts for posture, but not completely addicted to gaining sensory input though his feet.  He is there for the food, and the foot movements were his way of gaining sensory input and entertaining himself!

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Non-skid soles, and totally stylish, too!

Just putting on his tiny boat shoes gives him some “grip” on the foot plate, and he stayed in this position for the rest of the meal with our repositioning his body at all!  He still has to develop some hip control so his knees don’t move laterally as he reaches forward.  Using shoes with non-skid soles is an easy hack to help him get some distal stability without constantly touching and repositioning him.  Kids that get a lot of therapy and need almost total help for toileting and dressing really start to hate all our manhandling after a while.

Hope this gives parents and therapists an idea that requires very little effort and can  deliver immediate results!

Wondering how you are going to deal with potty training?  Check out my new e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone.  There is so little useful advice out there for parents of children with hypotonia!  My book as checklists and specific strategies for pre-training, choosing equipment such as seat inserts, and covers the sensory and social/emotional consequences of low tone as it relates to learning this important life skill.

My book is available on my website tranquil babies, at  Amazon and on Your Therapy Source, a great resource for pediatric therapy materials.  Coming soon:  my next book on raising a child with hypermobility.  It will include strategies for positioning, play, ADLs, and school activities.  My web designer suggested that I should add short videos so that you can see demonstrations and equipment/toys that make life easier for everyone!  Please submit comments if you have your own suggestions to make this book a great resource for parents and therapists!