A freshly brewed and delicious way to learn more about speech and language therapy and occupational therapy as used in the treatment of Fragile X syndrome

We recently had a 2-year-old visit from Iowa, a real cutie, but boy, was he ever a “mouth stuffer.” If you’re the parent of a child with Fragile X syndrome, you’re probably very familiar with mouth stuffing, a common issue we frequently are asked about. Mouse can stuff as well—just give her a bag of Chex Mix or Famous Amos cookies and watch her go!

Mouth stuffing, by Mouse or anyone else, is an overfilling of the mouth with the selected food. For kids with FXS, it is usually an adaptive means of trying to succeed with eating. More on that later…

Mouth stuffing is a symptom of other oral motor issues that need to be addressed by your occupational therapist, speech therapist, oral facial myologist, or sometimes two or three of these professionals work­ing in concert. We can hear you asking: “Three professionals working on the same problem?” Yes, in some regions of the U.S., speech therapists provide more of the oral motor therapy; in other places, the occupational therapist may provide this service. Oral facial myologists are the less-known experts. An oral facial myologist is a certified therapist who specializes in the precise alignment and function of the muscles of the face and mouth, utilizing specific home program-based exercises to strengthen muscles and improve oral motor function. The oral facial myologist can provide expert programming for motor-based difficulties, but may not understand the subtleties of the sensory aspects of mouth stuffing, especially in children with Fragile X syndrome (FXS).

So why do these kids tend to overfill their mouths? Because it simply tastes so good? Not likely!

Remember that children with FXS are plagued by low muscle tone and poor oral sensory awareness, as well as poor oral-sensory-motor control of the fine movements of their mouth. What a package of problems to try to manage! And how smart of these kids to figure out that given the diminished motor and sensory skills they have to work with, if they fill up the space, the work is easier and they receive more feedback, which will lead to success.

Let’s get back to that 2-year-old. We pulled out our favorite trick (once Tracy got it away from Mouse, anyway): Pop Rocks! You know—that fizzy, bubbly candy that goes POP! in a kid’s mouth as soon as it gets wet. What a success!

Your first thought when you think about Pop Rocks might be, “Are you serious—put something that ‘overstimulating’ in a toddler’s mouth? These gals really are nuts! Contrary to intuition, Pop Rocks may be the “just right” input to wake up that mouth and get those muscles activated. (Note: your intuition that we are a bit nuts may still be on target.)

For our visiting 2-year-old, we saw an immediate change in oral awareness—which resulted in a corresponding increase in oral movements (both quality and quantity)—as he explored the Pop Rocks with his tongue, cheek, and lips. All this with only four little Pop Rocks!

So, is the use of Pop Rocks going to solve all mouth stuff­ing issues? No. A well-considered program of oral motor play, oral sensory diet, and visual supports to manage oral portions is more the ticket. So here are some suggestions for you and your therapists to follow through on such a program. This is a limited list of things we have found particularly useful, but there are also some wonderful resources in OT and speech therapy catalogs.

ORAL MOTOR PLAY

  • Play puppy dog by having your child bite on a frozen, wet wash rag as you try to tug it away as he clenches it.
  • Provide your child with a variety of “chew toys” that provide resistance in the mouth.
  • Include sucking and blowing at meals with different sized straws. (Mouse loves those funky straws from the Asian Tapioca Tea House. Tracy is inclined to the twisty straw.)
  • Bubbles, bubbles, bubbles, and not just the kind in the little 99-cent bottle. Blow bubbles while in the bathtub, blow in a bowl of milk or pudding (not a cup; we don’t want to teach a behavior we have to undo). Just blow.

ORAL SENSORY DIET

  • We have found use of the Wilbarger oral pressure protocol to be incredibly valuable for most kids exhibit­ing mouth stuffing. This is interesting, considering that the method was devised as a treatment for oral hypersensitivity (oral defensiveness). You have to have direct training from a therapist trained in the Wilbarger techniques to know how to use this strategy—we can’t teach it to you in this forum, but ask your therapist about it.
  • Include crunchy and chewy-resistive foods at each meal and snack. The frequency of oral sensory input—sched­uled not just once or on occasion but about 6-8 times each day—is the key to this technique.

VISUAL SUPPORTS

  • Put only a single bite-size portion of the foods most commonly overstuffed in front of the child until that portion size is learned, then gradually increase.
  • Use a template on the plate showing the bite-sized portion (a laminated photo?) or have this on a card in front of the child next to her plate to visually cue her on the right amount.
  • Model, model, model—have the whole family talk about and physically demonstrate what portions are best for different (especially new) foods.

As for us, we plan to continue to stuff ourselves silly at every opportunity!

This article originally appeared in the Spring 2005 National Fragile X Quarterly.

authors
Tracy Stackhouse

Tracy Murnan Stackhouse, MA, OTR
Tracy Murnan Stackhouse is the co-founder of Developmental FX in Denver. She is a leading pediatric occupational therapist involved in clinical treatment, research, mentoring, and training regarding OT intervention for persons with neurodevelopmental disorders, especially Fragile X syndrome and autism. Tracy teaches nationally and internationally on sensory integration, autism, and Fragile X. Tracy is a member of the National Fragile X Foundation Clinical Research Consortium (FXCRC), the FXCRC Advisory Council, and the Scientific & Clinical Advisory Committee.

Tracy Stackhouse

Sarah K. Scharfenaker, MA, CCC-SLP
Sarah K. Scharfenaker, fondly known as “Mouse,” is the now-retired co-founder of Developmental FX. She has worked in the fields of Fragile X syndrome and neurodevelopmental disorders for more than 25 years. She provided speech pathology services to the Denver Fragile X Treatment and Research Center at The Children’s Hospital in Denver, and accompanied Dr. Randi Hagerman to the UC Davis MIND Institute to initiate its program. She has a master’s in speech pathology from the University of Montana.