Tag Archives: sensory processing disorder

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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Are YOU A Sensory Sensitive Parent?

If you fill out the Infant/Toddler Sensory Profile for your child and see yourself on the page too, don’t be too surprised. Actually, you might feel relieved, and even a bit excited. Because now you know that you aren’t “crazy” or “weird” or even “difficult”. If you have some sensory processing issues of your own, you can learn how to address them and improve your situation while you are helping your child learn to build her own sensory processing skills.

About one in four of the families I work with will admit that at least one parent has or had difficulties with sensory processing at one time. They rarely offer this information at the evaluation. Only with the reframing that occurs as I explain the process of therapy for sensory processing disorder for their child do I hear about how they or their partner only eats certain textures of food or cannot tolerate wearing clothes with long sleeves.

Now, that revelation is just the beginning of a conversation about themselves, because one or two issues with sensory experiences doesn’t indicate a sensory processing problem. Eventually I will hear about all the small and sundry things that this person avoids or alters in order to manage life as a functioning adult. Then it becomes clear to both of us: the story they told themselves about their preferences or personality quirks is likely to be based in sensory processing struggles, not psychology.

Older children and adults who have never had treatment are told (or tell themselves) that they are difficult, rigid, controlling, and too sensitive. This sounds very demeaning, but in fact it is often not intended to be hurtful. Behavior is often seen as only occurring for cognitive or emotional reasons. You have a feeling, and the reason is how you are thinking or feeling.  But behavior is now understood to have many drivers, and it isn’t always cognitive or emotional.

The truth is that sensory processing creates the impetus for many of our behaviors in childhood and beyond. Not seeing the effect of the body on behavior is a huge impediment to addressing issues effectively.  Yes, people who are overwhelmed with sensory input can and do try to control their environment and the people in it. It looks like they are rigid and difficult. But it is not the same as being manipulative and aggressive due to interpersonal or emotional events.

Avoiding touch or movement can also appear to be relational when it is a sensory-based issue. The relational problems begin when the person or other people interpret the behavior as indicating something else, such as shyness or social aversion. How you define yourself and how others define you is like choosing which road to travel. It means that you may not see all the reasons for behavior and all the possibilities for change.

Adults rarely receive effective treatment for long-standing sensory processing issues. Sometimes they have come up with their own solutions, such as doing yoga to receive deep pressure input. They may tell their friends that they can’t digest certain foods, when in fact just seeing some foods makes them nauseous. I am more than happy to work with parents and help them creatively explore solutions for themselves when it is indicated. I have even treated adults formally as an OT from time to time. When parents see themselves more clearly as they support their child, both parties can address sensory processing issues more effectively.

Low Tone and Toilet Training: Parents And Children Need To Work Together

This one is simple to explain, but not so easy to achieve with some kids.  Children whose interactional pattern is defiance or whining are going to be much harder to train, regardless of whether or not they have significant issues with low muscle tone.  In fact,  I would rather coach a very physically unstable but cooperative child than a toddler with mildly low tone but a firm commitment to resist any adult request.   If both parties aren’t able to work together, things may not go well.  At all.

Toddlers and preschoolers are known for their tendency to love the word “no”.  Did you know that, developmentally, the high-water mark for hysteria and the reflexive “no” is between 18 and 24 months?  Yup, that’s when language skills haven’t emerged to support expressing feelings and comprehending adult reasons. It is when emotional fuses are neurologically short, as in that forebrain is still sooo immature.   They really can’t handle their emotions at all on a brain level.  They have just left that sweet-baby phase where they want to please you more than anything, and they can’t be quite as easily distracted from bad behavior now.  This is a generalization, and there are some parents reading this that are thinking “We never got that lovely baby phase.  He went from crabby infant to bossy toddler!”  Well, I sympathize,  and I still invite you to read on.  All is not lost.  As language, emotional and reasoning skills slowly grow, a child who still falls apart easily and rages constantly isn’t always at the mercy of neurology as much as not having some basic coping skills.  It’s time to work on them before you jump into potty training.

Toddlerhood is long, all the way up to 5 years-old, and I won’t minimize the tantrums and agitation that can emerge.  This extended path to greater maturity is why I bought, devoured and constantly use The Happiest Toddler on the Block, Dr. Harvey Karp’s great book on building toddler coping skills. Half of the benefit is learning to both listen to and talk to toddlers in a way that calms things down.  I could not do my work as a pediatric occupational therapist with as much joy and enthusiasm as I have without these strategies.  Thanks, Dr. Karp!

For parents of children with language, communication or cognitive issues that result in developmental delays, your child may be 4 years-old but their other skills that are closer to 18 months old.  You can still toilet train.  Has your child been diagnosed on the autistic spectrum?  You can still train them.  Really.  The process may take longer and you may have to be both very creative and very consistent, but it can be done.  Job #1 is still the same: building a cooperative and warm relationship.

If your days are defined by defiance and whining, you need to learn all of the Happiest Toddler techniques that reduce frustration, including Patience Stretching and the Fast Food Rule.  Stretch Your Toddler’s Patience, Starting Today! You need to use “time-ins” for shared fun and warmth without a goal in mind.  You could try some of the more language-based techniques such as Give It In Fantasy and Gossiping.  And of course, you need to look at your approach to setting limits. All that love is great, but if your child knows that there are no consequences to breaking family rules or aggression,  your plan is in trouble.  Dr. Karp’s techniques aren’t intended to be a toilet training plan, but they set the stage for learning and independence.  Those are the ultimate goals of toilet training!

If you would like a more detailed or more personal level of support, visit my website tranquil babies  and purchase a consultation (in the NY metro area) or a phone/video consult!