By Tracy Murnan Stackhouse and Sarah K. Scharfenaker
A variety of therapies can be helpful in addressing many of the issues seen in Fragile X syndrome. Because the impact of Fragile X is so varied, it is important to do a careful evaluation of the individual’s abilities and difficulties in order to tailor a treatment plan to address specific needs.
There are many other strategies that may also be helpful to individuals with Fragile X syndrome in communication and social development. There are also a variety of alternative therapies that your child may benefit from and for you to consider in the development of your child.
Sensory Diet Concept
A sensory diet is not a food diet. It’s a treatment that includes activities tailored specifically for each child’s or adult’s (and their family’s) specific sensory processing issues. Under direct supervision of an occupational therapist, the goal is to reach and maintain an appropriate level of arousal and reduce sensory defensiveness throughout the day to help the individual in their daily life.
Originally introduced by Wilbarger & Wilbarger (2000), the comprehensive approach to treating sensory defensiveness includes:
- A sensory diet
- Other professional treatment techniques
One such technique is the Wilbarger Protocol (or brushing therapy), which uses deep pressure on certain parts of the body followed by proprioception — perception or awareness of the position and movement of the body — in the form of joint compressions. There is also a specific protocol for addressing oral sensory defensiveness.
These strategies are used in combination with an overall sensory diet that integrates sensory-motor activity into an individual’s daily life routine. It is critical that this protocol is not used in isolation and it needs to be initiated and monitored by a trained occupational therapist.
We know that difficulties with sensory integration can have a profound effect on a child’s participation in everyday childhood occupations such as play, school, and family activities.
The Alert Program — from occupational therapists Mary Sue Williams and Sherry Shellenberger — is a step-by-step curriculum that teaches children simple changes to their daily routine (such as a brisk walk, jumping on a trampoline prior to doing their homework, listening to calming music) that will help them self-regulate or keep their engine running just right. Through the use of charts, worksheets, and activities, the child is guided in improving awareness and using self-regulation strategies. The use of this program greatly enhances the overall structure and effectiveness of the sensory diet.
Use of the Sensory Diet Template
Typically, a sensory diet is best when designed by the family and therapist together. The therapist utilizes the direct treatment time to learn the individual child’s formula for attaining and maintaining appropriate sensory reactivity and arousal modulation.
The sensory diet is typically comprised of:
- A schedule of the key events in the individual’s day: A guide for when to introduce the specific sensory diet activity.
- A sensory diet activities list: The sensory diet activities are designed for the individual but are based on sound neuroscience principles about how the brain takes in and makes use of sensory input to create optimal states of arousal and performance. See below for more.
- A transition strategy and routines for success.
For #2 above, the neuroscience evidence suggests that several key types of sensory input have the qualities required to produce these effects.
Sensory Diet Suggested Activities
Note: These suggestions are intended for use as a guide for activities used in a sensory diet. The rationale and references supporting these activities are complex and can be explained to you by your occupational therapist. Correct implementation of these activities should be done under the direction of a registered occupational therapist. This guide is also available as a download. You may also want to see an example of the template filled out for a sample patient. (Thank you to Stackhouse & Scharfenaker, Developmental FX!)
Deep pressure input through the muscles, joints, and skin are some of the safest and most effective organizing inputs:
- Swaddling or wrapping in blankets
- Pillows to nestle, wrestle and cuddle in, use a variety of sizes and textures, weighted blankets, weighted or inflatable vests or cuffs at wrists/ankles
- Wearing ace wraps on arms, legs, and trunk; wearing spandex undergarments or neoprene gloves, shorts, headbands
- Wedged into a barrel with pillows
- Use of a gymnastic ball to roll over a person with careful pressure
Heavy work is active pressure-type input to the muscles and joints through pushing, pulling, lifting, carrying, and “working”!
- Vacuuming, carrying the laundry, carrying any load, mowing the lawn
- Pushing the grocery cart, pulling a wagon, riding a bike
- Stacking chairs, scrubbing tables
- Push-ups or pushing against a wall
- Climbing, resistance play
- Feet on bungee cord at a desk
- Carrying a weighted backpack
Heavy Work in the Hands
Heavy work in the hands is an effective technique that can be used easily in multiple environments. This is characterized as “fidget and focus”:
- Having access to one or preferably more small manipulative toys with which to simply “fidget”
- Playdough/therapy putty work
- Attaching a rubber tubing to a backpack strap to pull on as needed
- Attaching a telephone cord-type key chain to a belt loop to pull on or fidget
Oral Motor Inputs
Oral motor inputs can be organized when they engage the oral proprioceptors:
- Chewing on fruit leather, licorice, pretzels, gum, or non-food items such as aquarium tubing
- Sucking through resistive, long, or “silly” straws for liquids or other play
- Blowing blow toys, bubbles, or cotton balls in play
- Facilitating breath through sucking and blowing activities
- Teaching how to take a deep breath as a means of stopping and calming
A movement that is rhythmic and in a linear manner is typically calming:
- Porch or park swings
- Rocking chair, or rocking in a lap
- Use of a therapy swing or therapy ball as directed by a therapist
Vibration can be a powerful input to affect organization:
- Vibrating pillows, electric massagers
- Electric toothbrush
- Making vibrating sounds, such as “Mmmmm”
- Feeling the vibration of music from a speaker
- Many musical instruments, especially electric or mouth-blown create vibration (harmonica, drum machine, etc.)
Rhythm is typically a favorite calming input:
- Let music be a part of a daily routine. Have a bath song, a dressing song, a mealtime song, etc. It helps with attention and sequencing and can build independence — simply sing about activities as they are happening
- Teach concepts with music and rhythm
- Active participation with a drum, autoharp, electrical music devices, harp, etc. — listening to rhythm and quieting music of many varieties, such as environmental sounds, natural heart sounds, classical music, lullaby tapes, etc., and having these availably in the car, at home, work and school
Quiet time in a small place needs to be taught, valued, and practiced as a life skill in every environment:
- Create a hide-out or comfy place for each environment
- Make fidget and oral inputs and music available in this space
- Books for reading and music to listen to
Community-based activities incorporated into daily life facilitates a balanced, calm lifestyle:
- Hippo therapy (horseback riding with a therapeutic emphasis)
- Recreation centers for swimming, yoga classes, and other leisure opportunities
- Martial arts (carefully selected)
- Domestic duties, baking, laundry, stacking wood, yard work
The sensory diet allows you to anticipate the events (transitions) of the day that need extra sensory support. Typically, these sensory supports are set up in routines to ease the transition. The types of sensory input are similar to those in the sensory diet activities.