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.
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!
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Gifted 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.