Daily Living Skills

Daily living skills are all of the areas of development that are integral to our everyday routines. Eating, sleeping, dressing, washing and bathing, taking care of hygiene, and toileting are all daily living skills that may provide challenges for children and adults with fragile X syndrome and their families.

Sleep

Disturbances in sleep patterns are often noticed during infancy for persons with fragile X. Boys with fragile X may take much longer than other infants to sleep through the night. Getting to sleep may be difficult, as hyperarousal makes it hard to calm down. Bedding and pajamas may be scratchy, and their input disturbing. Even older children and adults may awaken in the night and wander about the house. Once they do sleep through the night, many people with fragile X continue to have "internal alarm clocks" that wake them up very early.

Both environmental adjustments and bedtime routines may be necessary to help optimize sleep. Room darkening shades, tapes of soothing sounds, and soft, loose pajamas and sheets may all help with the establishment of a calm atmosphere. Some families find it necessary to install gates or half-doors to prevent their children from wandering around the house at night. The establishment of a bedtime routine, with a regular bedtime and various rituals (stories, songs, etc.) can provide a signal that it is time to sleep. See "Sleep Disorders in Fragile X Syndrome"

Eating

Difficulties with breast and bottle feeding are often reported for infants and young children with fragile X syndrome. Oral motor weaknesses may cause sucking to be difficult, and some tactile defensiveness may cause breast feeding to be uncomfortable for the infant. A variety of bottle nipples may need to be tried, before one that is easy for the child to suck is found.

Many boys with fragile X syndrome are messy eaters. They often fill their mouths with too much food, not receiving enough oral sensation until they are ready to gag or choke. They may have some problems with drooling. Children with fragile X may not wish to use utensils and may try to eat all foods with their fingers, as the silverware provides another, overstimulating sensation. Parents and teachers may need to provide cues, such as "Chew" and "Swallow", after the child has taken several bites. The use of silverware must be encouraged, in order to make the child more socially adept.

People with fragile X often have strong preferences regarding the foods they eat. Some children prefer mushy foods that don't involve strong chewing. Occupational therapists and speech-language pathologists may recommend the introduction of fruit chews, bagels, celery, and other crunchy or hard foods, in order to promote better oral motor functioning. As with any child, foods can be introduced in small portions, with a requirement to try "one bite", in order to expand the diet.

Dressing

Young children with fragile X syndrome may have difficulty dressing themselves, due to overall developmental delays, problems with low muscle tone, and some aversion to various textures and feelings of clothing. Overall delays and problems with low muscle tone may cause a child to have difficulty putting his arms or legs through sleeves and pants. Various textures and tags may be uncomfortable, so once the clothes are on, the child wants to take them off again. Parents may need to search for clothing with soft fabrics and remove tags from collars.

Parents and teachers may need to devise strategies to help break the sequence of dressing into steps and use "backwards chaining" (completing all of the steps, except the last, which the child must carry out, then having the child carry out the last two steps, etc.). Clothing without buttons, snaps, or ties is easier for young children. Pants with elastic waists, shoes with Velcro closures or curly laces, and T-shirts are all helpful when the fine motor skills of buttoning and tying laces have not been mastered. Occupational therapists can be helpful with these fine motor skills and may suggest particular strategies for dressing.

Hygiene

Some difficulties in hygiene are often encountered by persons with fragile X syndrome and their families, due to overall developmental delays and tactile defensiveness. Many boys and men with fragile X are uncomfortable with washing, bathing, brushing their teeth and hair, and shaving, due to the hyperstimulation that such actions provoke. Not all boys with fragile X are averse to bathing or showering, but some may not like the feeling of the water on their skin. People with aversions to touch may need to decrease their hyperarousal through some calming strategies (see Therapy for Sensory Integration) before going for a haircut or dental appointment.

Routines for washing and brushing teeth and hair need to be established early. Charts with pictures of the sequence of activities may be helpful. Egg timers and other cues for the amount of time needed for brushing teeth may be effective, as may be battery operated toothbrushes (however, they may be overstimulating or "ticklish" to some). Firm pressure in brushing hair and in washing with a washcloth may be tolerated more easily than light strokes.

Dental Care

Routine dental care is very important for children with fragile X syndrome. They often have crowded teeth and poor brushing habits, which combine to cause problems with tooth decay. High anxiety levels and tactile defensiveness may cause visits to the dentist to be very difficult, and extensive preparation may be needed (books about going to the dentist, sitting in the chair before the actual appointment, watching a sibling or parent have his or her teeth checked). Some boys with fragile X syndrome have mitral valve prolapse, and a prophylactic antibiotic needs to be taken before dental work is done. Pediatric dentists, especially those who have worked with children with special needs, often have the special expertise needed for treatment of children with fragile X.

Toilet training

Toilet training with most children is a challenging task, and with children who have fragile X syndrome, it can be a long and frustrating experience. Many children with fragile X, especially boys, are delayed in their toilet training, due to their overall developmental level. Some also seem to have a poor sense of their bodily cues. Bowel training seems to be especially difficult for some children. Hypotonal muscle problems may cause an immature sphincter muscle, which affects bowel control. The child may not sense that he needs to have a bowel movement until it is too late. Poor eating habits may contribute to loose stools, or to constipation, which exacerbate the bowel problem further.

Toilet training seems to work best with a routine and fixed schedule. Parents and teachers may want to have the child urinate every thirty minutes when he is in preschool or elementary school. He may need to sit on the toilet at a certain time after breakfast or lunch, if a schedule of bowel movements can be determined. Most boys with fragile X become independent with regard to their toileting needs, but patience and vigilance are needed by parents and caregivers to get to that stage.

Gail Harris-Schmidt, Ph.D., CCC-SLP
Saint Xavier University
Chicago, Illinois

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