Pre-school 0 – 3 Years
Pre-school / Early Childhood Education
At the pre-school/early childhood level, education options can range widely. A child with Fragile X syndrome could attend a daycare or nursery school designed for children with special needs. Another option might be integrating your child into a daycare or nursery school with a mixture of non-disabled children and those with special needs. Some programs may offer pre-school classes to those with developmental delays and other special needs, and then include neighbourhood children who have no such delays. A speech-language pathologist, occupational therapist, and special education aide could come to the pre-school and provide services there, but you would be responsible for this arrangement.
Parents should visit the various programs to see which are most appropriate for your child. A structured, calm atmosphere with a predictable routine is vital for children with Fragile X syndrome. Visual cues and calming spaces (e.g., corners with bean bag chairs and audio tapes) are needed for many children. Children with Fragile X syndrome benefit from modelling other children, so a setting that includes children at a variety of levels, including some at a higher functioning level than your child, may be most appropriate.
It is important for parents to realize that the choice of placement at the early childhood level does not mean a child will always be in that type of classroom. A parent and multidisciplinary team members might opt for an intensive language stimulation program in a special education setting at the pre-school age, with the plan that a more inclusionary setting may be appropriate in elementary school. For pre-school aged children with Fragile X syndrome, you can work together with teachers to set goals in any of the following areas: language (for both comprehension and expression), self-help (toilet-training, dressing, eating), play skills, academic readiness (colours, numbers, letters), math (counting, sorting, recognition of sizes and shapes), behaviour (co-operation, listening, following routines and directions), sensory-motor development (calming), fine-motor control (colouring, cutting), and gross-motor development.
Reaching those goals could happen in a number of ways. For example, an occupational therapist and a speech-language pathologist could come into the early childhood room twice a week and provide joint activities (e.g., language and movement activities that tie in with the current story or theme). At one point in the visit, the speech pathologist could work one-on-one with your child on a particular goal. The occupational therapist could provide deep pressure before the child begins writing and cutting activities and show the early childhood teacher or workers how to provide calming techniques.
Language Development & Speech Therapy
Normal language milestones include approximately six words by 16 months, two-word phrases by 18 months, and three-word phrases by 24 months (Hagerman 1995).
Some children with Fragile X Syndrome, particularly boys, do not begin speaking until very late, after the age of two, and a few do not speak at all. Language delay is often the first sign of developmental problems. Delayed speech may be related to cognitive levels, oral-motor problems, middle ear infections and associated conductive hearing loss, and/or autism. Children with Fragile X Syndrome may have aberrant language patterns, such as cluttering (a language fluency disorder with abnormally rapid rate, erratic rhythm, poor grammar and words unrelated to the sentence), echolalia (repetition of vocalizations made by another person), and perseveration (repetition of a word or phrase), as well as articulation problems. If your child has such issues, you should get a referral from your doctor to a speech and language pathologist for a thorough evaluation and individual therapy for your child. The therapist can also develop a home program to enhance language stimulation.
Speech-language pathologists (SLPs) can provide services in a variety of settings, often collaboratively with other professionals. In early years, these services may be provided in the child’s home. The SLP could come each week with a bag of toys and give you ideas to stimulate language and speech development. Or you could bring the infant or toddler to a group class at a centre for children with developmental delays, where you can play, sing and learn language-stimulation techniques together.
Many children with developmental delays understand more than they can say, such that the use of augmentative or alternative communication (AAC) devices may be helpful in allowing their thoughts and desires to be known. AAC encompasses all kinds of communication, from gestures and sign language, to picture cards, communication boards and computerized interactive devices. These devices help develop speech and language in those who are non-verbal, and it can serve as a bridge to spoken language.
AAC can accompany oral language, so that a communication partner offers the child with Fragile X syndrome both the auditory input (words and sentences) and a visual cue (a picture, sign, logo or gesture). This can strengthen the child’s understanding of language. In addition, AAC offers children a way to express themselves. By pointing or gesturing, a non-verbal child can make his or her wants or needs known. This ability may also help with behavioural difficulties, such as screaming or hitting, that have occurred because the child cannot be understood.
For non-verbal boys with Fragile X syndrome, words and visual symbols should be chosen to best help their communication needs. Real objects, photographs and clear, realistic drawings are the most concrete visually. A communication board may need to be used for more symbolic drawings (e.g., the symbol for “want”). Gradually children may be able to comprehend more abstract symbols. Some may even be able to read words. Gradually children may be able to comprehend more abstract symbols. Some children may be able to learn to read.
Parents may be concerned that the use of AAC will prevent their child from talking. On the contrary, AAC has helped many children to grow in their language learning, integrating their use of AAC devices with vocalizations and gestures. Children who have autism as a comorbidity may not benefit optimally from SLP approaches and may need a behavior therapy approach, provided by a behavioral psychologist, to enhance language development.
Chiidren who have autism in association with Fragile X syndrome may not benefit optimally from SLP approaches. They may need a behaviour therapy approach instead or in addition, provided by a behavioural psychologist, in order to enhance language development.
Occupational therapy can be provided in a variety of ways to children with Fragile X syndrome. For very young children, an occupational therapist (OT) might make a home visit, in order to help the family make environmental adjustments in the home. Parents may be able to make changes to areas such as lighting in the child’s bedroom or noise levels in certain parts of the house. Some families may find it helpful to purchase swings, big balls, or other equipment that provides calming sensory input to their youngster.
The parent of the infant or toddler could receive occupational therapy services through a school district or private agency. Parent-infant groups may be led by an OT, who teaches the caregivers calming strategies, massage, deep pressure and other techniques helpful for soothing an over-stimulated baby.
Combined therapy with an OT and a speech-language pathologist may be provided in a centre or school. Activities may include calming strategies, along with physical activities and language stimulation. Occupational therapists and speech-language pathologists may help design an environment and a daily sequence of activities that are most conducive to learning.
There are many activities that occupational therapists can use to help increase tolerance to touch around the face, neck and mouth, and thus to improve chewing, swallowing and speaking. Speech pathologists may work jointly with occupational therapists to design oral-motor activities appropriate for a child. These may include physical activities that begin away from the mouth, but that gradually allow the child to build up tolerance around the face and mouth.
Both food and toys can be used in oral-motor activities in order to provide incentives. Blow toys, whistles and straws can be used to help build up oral-motor strength and functioning. Occupational therapists and speech pathologists may recommend a variety of foods to help with chewing and oral-motor strength. These might include crunchy and chewy foods, such as fruit snacks, celery, bagels and gum. In addition to helping with speech and language, such oral stimulation may help prevent the child’s chewing on clothing, straps or skin.
Writing calming activities into each day’s plans with young children is an important form of sensory therapy. These activities may involve a variety of physical inputs, such as rocking or swinging the child, applying deep pressure or brushing the child’s skin with a therapeutic brush. The sensory-therapy plan may also include breaks in the day, when the child can go to a quiet space and calm him or herself by playing a computer game or listening to music or a story on headphones.
Environmental changes are often essential for the child with Fragile X syndrome to perform at his or her optimum level. The occupational therapist may make suggestions about lighting, including using as much natural light as possible. She or he may design goals that help the child gradually tolerate more visual information or brighter lighting.
Seating adaptations may need to be made to help the child maintain an upright posture and focus. School desks and chairs may not provide enough feedback to the child’s body about where the child is in space. Donut-shaped cushions may be helpful, but could draw too much attention to a child in an inclusion setting. Young children may be able to sit on foam wedges rather than carpet squares during “circle time.”
Movement therapy is important to help the child with Fragile X syndrome to have a good sense of their body in space. Balance and muscle tone can be worked on through a variety of physical activities: dance, martial arts, sports and physical play.
A large minority of Fragile X Syndrome children have autism as well, and they can benefit from an ABA (Applied Behavioral Analysis) program, which is directed by a behavioral psychologist. An ABA intervention pairs a desired outcome with a positive reinforcement over repeated trials, and the child becomes motivated to perform the desired outcome. The earlier this intervention is begun, the better the result is likely to be. An ABA approach can be helpful for a very wide range of issues, from language development to tantrums, aggression, self-injury, inappropriate expressions of frustration in non-verbal and low-verbal children, eating issues, and educational difficulties. ABA is the only intervention for autism thus far for which there is scientific support.
Delays in toilet training are common in young children with Fragile X syndrome. The average age for successful toilet training in males with Fragile X syndrome is between five and six years, and for females it is four years (Fragile X Society 1995).
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, especially boys, are delayed in their toilet training due to their overall developmental level. The attention deficits and the sensorimotor integration problems add to toileting difficulties. Some children also seem to have a poor sense of their bodily cues. Bowel training seems to be especially difficult for some children. Hypotonic 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 or she is in pre-school or elementary school. The child 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 syndrome do become independent with regard to their toileting needs, but patience and vigilance are needed by parents and caregivers to get to that stage.
Read up on strategies for teaching this skill and then choose one, or a variation of one, to try with your child to see the response. If your child shows some success, then continue the training. If your child is resistant, or it appears your child is not ready, stop the process. Then, step back — look at what worked and what did not work, and figure out how you want to approach it next time. Your child will have success. Consistent use of positive behaviour reinforcement and the use of videos and books are usually helpful.
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 with Fragile X syndrome and their families.
Disturbances in sleep patterns are often noticed during infancy for children with Fragile X syndrome. Boys 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 disturbing to the child. 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 syndrome 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 regular bedtime rituals (stories, songs, etc.) can provide a signal that it is time to sleep.
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, until they are ready to gag or choke, because they receive enough oral sensation. They may have some problems with drooling. Children 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. Using silverware must be encouraged, in order to make the child more socially adept.
People with Fragile X syndrome 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.
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 of clothing. Overall delays and problems with low muscle tone may cause children to have difficulty putting their arms or legs through sleeves and pants. Certain textures and tags may be uncomfortable, and the child may want to take the clothes off as soon as they are on. 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.