Many children with Fragile X syndrome (FXS) struggle with feeding issues ranging from over-stuffing to picky eating. Mealtime can become stressful for families when these feeding problems exist.

This article highlights some common feeding difficulties that individuals with Fragile X syndrome struggle with and suggests some strategies to make mealtime more successful for your family.

Postural Instability

Low muscle tone and postural weakness are common characteristics seen in individuals with Fragile X syndrome. This makes sitting upright at the table and using your hands to manipulate feeding utensils difficult. Often times, the simple demand of sitting at the table can be the main source of friction at dinnertime.

Poor postural stability during mealtime often looks like the following:

  • Unable to sit still in the chair
  • Props head on the table with hands
  • Leans against the chair or table
  • Stands while eating
  • Walks around while eating
  • Slides out of the chair

These behaviors can be disruptive and create poor eating habits. Promoting postural stability at the table can significantly impact the quality of mealtime. We want to support an upright posture at the table, which involves activating the core muscles to hold the head up and allow the arms and hands to work in front of the body. The child should have a good base of support at their feet as well so no more dangling legs at the table.

Some simple strategies to use at home to create postural stability are:

  • A Theraband↗ wrapped around the legs of the chair to activate core
  • Books stacked or placed under their feet so they are grounded
  • A cushion placed behind their back if they are slouching or sliding forward, to create an upright posture

Mouth Stuffing

The oral motor aspect of eating is complex. When eating occurs normally, the lips are able to close together to keep food inside the mouth, the tongue tip moves food back to the molars, the tongue shifts side to side to move the food around, and the muscles work in unison to chew and swallow.

A combination of factors, including high arch palates in the roof of the mouth, low muscle tone, poor midline crossing, and poor oral awareness, makes the task of eating incredibly challenging for some individuals with Fragile X syndrome.

Commonly observed oral motor difficulties include:

  • Putting more food in the mouth than they can handle
  • Food falling out of mouth while chewing
  • Pushing food into the back of their mouth with hands
  • Putting food in their mouth before they have chewed and swallowed the previous bite

Over-stuffing can be challenging to resolve, but there are strategies that can help reduce this behavior. Over-stuffing the mouth with food is the only way most of our kids know how to eat successfully. It takes a lot of cuing and patience, and sometimes therapeutic intervention, to see progress in this area. With any skill that we want to teach, we have to show the child what it looks and feels like to do it the correct way.

Individuals with Fragile X syndrome are typically strong visual learners so we can utilize this strength to help with reducing over-stuffing. Some strategies to decrease over-stuffing are:

  • Waking the mouth up before mealtime with alerting tastes (i.e., sour) and cold temperatures (i.e., ice)
  • Simple and consistent verbal cuing
  • Model what you want them to do, over-exaggerate the behavior and do it in slow motion
  • Role play and take turns with a bite size that is “just right”
  • Use visual cuing (i.e., pictures) at the table to cue appropriate bite size and pausing
  • Use a mirror to help draw attention to their mouth so they can see what is happening

Picky Eaters

Everyone has food preferences. We all have the ability to decide what kind of tastes, textures, and temperatures we like about foods. However, being overly picky about foods often results in poorly balanced diets, rigidity around mealtime, and refusal to try new, or non-preferred, foods. Sensory modulation dysfunction is a common feature in most individuals with Fragile X syndrome, which results in an inappropriate response to certain sensations.

Frequently seen problems within this area of feeding include:

  • Avoiding certain tastes, textures, or temperatures
  • Eating “tan” and “bland” foods (e.g., chips, chicken nuggets, fries)
  • Lacking variety in diet
  • Particular about brands, labels, and restaurants
  • Dislike non-preferred foods on plate
  • Not liking foods touching each other
  • Avoiding “messy” foods or “multi-textured” foods

If your child struggles with picky eating, you have probably witnessed an over-exaggerated response when you present a new, or non-preferred, food. Individuals with Fragile X syndrome can become disorganized, often hyper-aroused, when presented with a challenging food.

If this is their typical response, I recommend that new, or non-preferred, foods be introduced during non-meal times (e.g, during play time, table top activities). The goal with introducing new foods is to explore them without pushing the child to a disorganized state. We can challenge our children to explore foods by smelling, touching, chopping up with a utensil, licking, and putting it in the mouth to feel it. When the child becomes comfortable with that new food, then we can add it to their plate during mealtime.

Some strategies to explore new foods and expand their diet include:

  • Exploring the qualities of food (i.e., hot, cold, crunchy, mushy) — talk about it and use visuals
  • Play with the food and have fun (e.g., make food art, build a person out of food)
  • Build positive associations by rewarding them instantly when they explore the food (e.g., sharing a smile, high five, getting a star or sticker)
  • Use visuals to show what you are doing and when you will be all done (e.g., first–then pictures, timers)

Mealtime Chaos

Mealtime can be chaotic for any family. Children who struggle with feeding tend to struggle more with mealtime routines because they have such negative associations with feeding. There are a number of stressors that can increase hyperarousal and poor performance during mealtime, including over stimulation of the senses (e.g., smells, sounds), unclear routines, new foods, and poor appetite.

Parents commonly report the following behaviors surrounding mealtime:

  • In and out of seat during mealtime
  • Refuse to sit at the table
  • Maladaptive response to foods presented
  • Not hungry due to grazing all day or hyperarousal
  • Emotional distress, behavioral outbursts, or shutdown

When we provide support during mealtime, it’s important to give the child clear predictability, environmental modifications, “just right” interactions, and sensory strategies (as needed). It is important to remember that this is a process and will take tweaking over time to help your child be successful.

I recommended making a small number of changes to your mealtimes and gradually shift to the best-suited strategies for your family. It can be overwhelming to the parent and the child if too many changes are attempted at the same time.

Individuals with Fragile X syndrome are great imitators and benefit tremendously from visual supports. Many of these strategies highlight these strengths and learning styles. If you already have a strategy in place for different skill areas (e.g., visuals for getting dressed, reward charts for toileting), don’t be afraid to modify and implement what is already working for your child.

Here are suggestions for strategies to improve mealtime routine, participation, and enjoyment:

  • Implement a routine and be consistent — provides predictability
  • Use visuals such as pictures, first–then, checklist, and times — provides predictability
  • Involve the child in choosing the food; make sure there is at least one food the child likes — provides predictability and mealtime interaction
  • Involve the child in setting the table — provides predictability and routine
  • Let the child choose where they like to sit, sitting next to them vs. across from them is often helpful — provides environmental modification
  • Don’t ask a lot of questions, make statements instead: “You know what I saw today? A deer in the middle of the road,” or something like that. Avoid questions like, “What did you do today?” Don’t put the child on-the-spot — provides “just right” interaction
  • Model appropriate manners, and use narrative language, such as, “My food stays on the plate” — provides “just right” interaction
  • If there is an aspect to eating you want to teach your child, do it at a different non-meal time when it is calm and there are no expectations
  • Sensory diet before mealtime

I hope you are able to implement some of these strategies into your mealtime routine and see successful changes. Please remember that when trying anything new with our kids, it is best to start with only a few changes at a time and see what does and doesn’t work!

If your child exhibits feeding challenges that seem beyond your ability to manage at home, speak to your speech therapist or your occupational therapist for recommendations.

Kristin Burgess Watson

Kristin Burgess Watson, MS, OTR/L
Kristin Burgess Watson is a pediatric occupational therapist from North Carolina, and grew up in the Fragile X community, alongside her older brother John David who has Fragile X syndrome.