Living with Fragile X

In this section you’ll find important information that is age based. It contains information about education, therapy (including speech therapy, physiotherapy, behaviour and occupational therapy) and other topics relevant to each stage of life for someone diagnosed with Fragile X syndrome.

Supporting needs across a lifespan

Pre-School
0-3 years

Pre-school
Speech Therapy
Occupational Therapy
Sensory Therapy
Behaviour Therapy
Toilet Training
Life Skills

School Age
4-12 years

Education System
Continuing Therapy
Social Skills
Behaviour
Dental Care

Adolescent
13-20 years

High School
Ongoing Therapy
Social Skills
Puberty / Sexuality
Hygiene

Adulthood
21+ years

Life Planning
Financial Planning
Housing
Work Options

Helpful Tips
Toolbox

Transition Planning I Child and youth services to Adult services

Navigating transition services can be a complex and overwhelming process for families, with challenges in identifying and accessing the right supports. The availability and scope of these services often vary widely across Canada due to differences in provincial supports, making it even more difficult to find the resources needed. It’s through the collaborative efforts of the community around us—schools, organizations, and families—that these transitions can become a little smoother and more manageable. Together, we can work to share knowledge, build bridges, and ensure families have the tools they need to navigate these critical moments.

Ontario Supports - York Region

We extend our heartfelt thanks to the Work Experience and Transition Program at York Region District School Board for their incredible efforts in creating this comprehensive resource. Their dedication has helped alleviate some of the challenges families face during the discovery process, providing valuable guidance to support smoother transitions. Your work truly makes a difference!

We are continually building and expanding these resources to better support families on their journey. If you have resources or insights to share, we’d love to hear from you, please contact us and help us grow this valuable collection: CONTACT US HERE

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

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.

Sensory Therapy

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.

Behavior Therapy

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.

Toilet Training

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.

Life Skills

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.

Sleep

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.

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, 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.

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 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.

School Age 4 – 12 Years

Education

Education Overview
Once your child is old enough to enter school, you can expect to spend many hours getting to know the education system in your area of the country. Since Fragile X syndrome is currently a lifelong condition, those affected will need support throughout their school years. This support can take many forms and will need adjusting as the child progresses and becomes more mature. As is the case with all children, no two children will have the same personalities, strengths or areas of need. You are no different from any other parents in wanting your children to be happy, productive members of the community with equal opportunities to maximize their potential. With that in mind, here are some areas to think about when navigating the educational system in your community.

Advocacy
As the parent of a child with Fragile X syndrome, chances are you are the best advocate your child has. It’s important to always remember that you know your child better than anyone at school, so it’s up to you to communicate his or her strengths and needs as well as likes, dislikes and helpful hints.

Inclusion or mainstreaming into the regular classroom is recommended whenever possible, so that the child will have models of normal behaviour in the classroom and will learn appropriate social skills. The regular classroom assignments can be modified by an educational aide or special education teacher, so that the child can complete an appropriate amount of work without excessive frustration.

The other half of advocacy is active listening. It is extremely important to always listen to anyone who is in any way involved with your child’s education. Sometimes it’s useful to have a support person present, such as a spouse, relative, friend or support worker, who can take notes while you listen. If for any reason you don’t feel able to do some of the above, you will need to work more closely with your support person to make sure your child’s support needs are clearly conveyed.

Communication
Communication Another big part of advocacy is effective communication. Clear and open lines of communication between you and the school principal, teacher, education assistant, therapists and even the other students in your child’s class will help ensure that both you and your child are getting the most out of the educational experience. Thinking of this as a partnership between you, your child and the school can go a long way in fostering a co-operative attitude among all parties.

One way to facilitate this is by keeping a daily journal. Some school boards provide these to all students. If not, it’s easy to put together a binder that has space for daily input from you and the teacher or support person as well as your child, if he or she is able. In the journal, you can make note of things that happened at home in the evening.

Example of a parent entry: “John had a little trouble transitioning into the house after school today, but settled down after a while and did about 15 minutes of homework. He’s talking a lot about a trip. Is there a class trip coming up?”

Example of a teacher entry: “John had a great day! We’re doing a unit on different ecosystems and he liked the parts about water. During this unit, we have a trip planned to the conservation area in a few weeks, so maybe that’s what he’s talking about. I’ll send home the permission form next week.”

You can engage your child in discussions about the school day by prompting him or her with things that you now happened during the day, based on your reading of the school journal. By reviewing your comments, the teacher can know what’s going on at home, so that they have some context and rationale behind a particularly good or bad day at school and can adapt how to engage with your child accordingly.

If your child is in an inclusive school setting, you may want to suggest that you visit your child’s class to discuss Fragile X syndrome and answer any questions the students may have. Again, if you are not comfortable doing this, you may wish to bring in someone else who can do this on your behalf. Remember: education is more than “the three Rs”. It’s about social and emotional learning as well. If the children in your child’s class know more about Fragile X syndrome, they’ll feel more comfortable engaging, assisting and befriending your child. Who knows? Maybe someday, one of those children might be in a position to hire your son or daughter, or someone else with special needs.

Here is an example of how you can talk to a class about Fragile X.
Simply download the Microsoft Word file and adapt it as you wish.

Most school boards will conduct annual review meetings for any child identified as having special needs. They should provide an individualized education plan (IEP) to determine the curriculum and learning goals for each child with special needs. It is extremely important that you attend any meetings where your child will be discussed. It is equally important to have input into your child’s education plan. Again, a collaborative attitude and open lines of communication will go a long way in making your child’s educational experience a meaningful one.

A few thoughts on Inclusion
True inclusion means that your child attends your neighbourhood school in a regular, age-appropriate class, with proper learning supports to facilitate success. If this is your vision for your child’s education and you don’t live in New Brunswick (currently the only province with legislated inclusive education), you may have a struggle.

One of the advantages of an inclusive setting is that kids with Fragile X syndrome are great social imitators. They tend to model both good and bad behaviours. That’s why it’s important to have them exposed to good peer models on a regular basis. Also, social inclusion within the community is usually much greater and easier if your child is known by the other kids in the neighbourhood.

Of course, there will be many factors to consider when looking for the most appropriate class setting for your child, and you will ultimately need to do what you feel is best for your child. However, it’s good to know that there are many examples of successful inclusion within the school system. Inclusion or mainstreaming is recommended, so that the child will have models of normal behaviour in the classroom and learn appropriate social skills. The regular classroom assignments can be modified by an educational aide, so that your child can complete an appropriate amount of work without excessive frustration. Although inclusion is beneficial, it should take place in addition to individual therapy in language, motor areas. Often an aide is needed in a regular classroom for your child, to modify work and support good behaviour. Creativity, flexibility and innovation are the key features for creating an educational environment that enhances the learning strengths and remediates the disabilities of the child.

Support services available
Depending on where you live in Canada, there may be many resources for you to connect with when looking for support with your child’s education. A good start is to know your child’s rights within the educational system. Reading up on the regulations regarding those with special needs within your province’s Education Act will give you a good foundation.

Your local Community Living Association or similar developmental service agency may also be able to give you support from pre-school age onwards. They can help with transition planning (into daycare, from daycare into kindergarten, primary to middle school, middle school to high school). They can also help facilitate inclusion within the class setting, assist in advocating for the placement you want for your child, attend school meetings with you and help coordinate other services and supports that you may need.

Do some research on your local board of education in terms of the services and supports they provide to children with special needs. Many boards provide services in physio, speech and occupational therapies as well as education assistants and resource teachers. Again, many local developmental service agencies will have knowledge regarding the local school board, so it’s important to connect with one of them early in your journey.

Perhaps the most important thing to know about support services is that you are not alone, and there are many caring people out there to help you and your child. Navigating the system is challenging, and sometimes you will run up against a brick wall, but the fact that you are reading this means that you have made a connection to others who know what it’s like to have a child or children with Fragile X syndrome. Together, we will make the best life possible for our kids. They’re worth it!

What is an Individualized education Plan (IEP)?
Each year, everyone involved in your child’s education will come together to develop your child’s IEP for the school year. The IEP is the foundation of the child’s educational program and must be developed with care. Parents are vital team members in writing the IEP and you should bring to the annual meeting your priorities for your priorities for your child’s education.

An IEP is made up of:

A description of the child, including their present level of functioning
Goals and Objectives
Related services to be provided
Special education placement
Timing and method to evaluate the IEP

Here are brief explanations of each aspect of the IEP:

Description of child – Present level of functioning: The first section of the IEP includes both demographic information about the child and a description of the child’s strengths and needs. Parents should be sure to include information about what the child can do, what his or her strengths are, and what learning style he or she presents (e.g. He needs visual cues for directions; she works best in small, quiet spaces). This section also includes results of the initial observations and testing.

Goals and Objectives: Goals are written for the results that the team would like to see the child achieve during that year (annual goals). They are to be written in a positive, measurable way (e.g. Given a picture board, Sean will make his needs clear to his teachers). Objectives are shorter-term benchmarks, designed to measure progress along the way to the goal. They may include how much assistance the child is to be given, how accurate the child must be, how often a behaviour is to be shown, etc.

Related services to be provided: Related services supplement the activities provided in the classroom. These may include: Assistive technology (e.g., communication boards, computerized language devices, padded supportive chairs), audiology, counselling services, occupational therapy, parent counselling and training, physical therapy, psychological services, recreation, rehabilitation counselling services, school health services, school social work services, speech-language pathology, and transportation.

Special education placement: The most appropriate placement in the least restrictive environment (that is, as much as possible with regular education peers) for the child must be determined after the goals and objectives have been set up. Some school areas provide a range of placements, and the team’s goal is to decide which is the most appropriate in the least restrictive environment. The IEP must state how much time the child will spend being included in the general education classroom.

Evaluation of the IEP: Goals and objectives must be written in measurable ways, then regular evaluation can be carried out to learn how the child is progressing toward those goals. Every parent should request regular meetings to review progress and goals. If goals need to be adjusted, then parents should request an IEP update meeting.

Reevaluation: This does not need to mean the administration of another battery of formal, standardized tests. Evaluation may be through teacher observation, the development of a portfolio of the child’s work, the use of checklists and other descriptive means.

What special considerations should an IEP include for a child with Fragile X syndrome?
Particularly for boys with Fragile X syndrome, it is very important that the IEP is developed and implemented by a multidisciplinary team with a coordinated approach. The occupational therapist and speech-language pathologist should be able to work together to design programs.

Considerations about the setting for education are important, not only in thinking about the least restrictive environment, but also in addressing sensory needs. Boys with sensory overload characteristics need to be in settings that allow for quiet spaces, time to pull back from the entire class, and materials for calming.

In choosing inclusion classrooms, parents and school personnel need to seek out those regular education teachers who are calm, structured and attuned to individual needs. A teacher who follows a regular schedule and provides visual cues for transitions may be very helpful to the child.

A language-rich environment is also important for boys with Fragile X syndrome. Such boys may be able to imitate good role models for
conversational skills.

Girls with Fragile X syndrome may require resource room services for assistance in math skills and work with a speech-language pathologist for pragmatic (conversational) goals.

What other services are available in the education system?
The IEP should describe what other services are needed by the child in special education in order to benefit from the educational services. These are supportive services that supplement the educational program. They can include such services as:

Assistive technology: Assistive technology is defined as equipment that helps the child improve his or her functional capabilities. For children who are not yet speaking, the assistive technology might be picture cards, a language board, or a computerized, talking device. For a child with low muscle tone, the assistive technology could be a special chair to help with positioning and posture. Find out if your local school board will take responsibility for both the purchase of the appropriate devices and the training of personnel to use them.
Occupational therapy: Occupational therapists assess and treat disabilities in children that affect their daily life functioning. They work with sensory-motor, fine motor, oral-motor and other skills to aid in academic, play and daily living skills. Occupational therapists are vital components of the team.
Physical therapy: Physical therapists generally focus on gross motor functioning, postural control, sitting, standing and walking.
Behaviour management services: Help with transitions, social interaction, behavioral adjustment and self-control.
Transportation: what the requirement of the school board to provide transportation for your child?

What kinds of goals are appropriate for elementary school-age children with Fragile X syndrome
Goals should be designed for all areas of need: academic, social, behavioural, communication and sensory-motor. Each of these may be affected by the others, such that a multidisciplinary approach will be the most effective. Goals that emphasize the child’s learning style and strengths are also vital. The recognition of the etiology of the child’s special education needs will help teachers and therapists design a plan that fits the individual child.

Academically, many children with Fragile X syndrome learn better when material is presented in a simultaneous manner, rather a sequential one. For example, they learn to read better with a whole word approach than with a phonics method. Logos and pictures are also helpful visual cues for word identification.

Children with Fragile X syndrome may learn spelling words better as entire units, then perhaps in syllables, rather than sound by sound. Math goals should also be presented in a visual and tactile manner, with real object counters, size and shape manipulatives, touch math, and concrete examples.

The IEP goals must also address the social-emotional needs of the child with Fragile X syndrome. Speech-language therapists can work on pragmatic (conversational) skills in social groups, and the social worker can help other children with strategies to be friends with the child. Social-emotional development may be enhanced by careful consideration of the learning environment.

Occupational therapists will make sure there are appropriate settings and equipment for a calm, structured learning environment. Behavioural plans can include goals, rewards and consequences for appropriate behavior. Visual cues (e.g., hand over the mouth meaning “Quiet mouth”) and calming activities can lessen the inappropriate behaviors of children with Fragile X syndrome.

Communication and sensory motor goals may be addressed together at times. Speech-language pathologists and occupational therapists have ideas for oral-motor stimulation and may work together, helping the child to chew on gum, fruit snacks, and hard, crunchy foods, rather than his hands, clothes, or backpack straps. Social-motor groups can be designed to incorporate movement into role-playing activities. Board games and computers might be used for turn taking, communication and fine motor skills.

For girls with Fragile X syndrome, both social-pragmatic and math goals may need to be addressed. Speech-language pathologists and learning disabilities teachers may be part of the team to work in these areas.

What are some important teaching strategies?
Teaching strategies built into the IEP for school-age children should focus on individual learning styles and include:

Awareness of learning style:
Use of simultaneous processing activities;
Whole word methods for reading and spelling;
Visual cues, including pictures, sign language, logos, and words;
Concrete, high interest examples and materials;
Modelling and imitation, for both behavioural and communication goals;
Integration of self-help goals with language and motor goals (eating, dressing, toileting);
Inclusion of functional skills, along with academic;
Highly structured, predictable routines, with visual cues for changes in expected events;
Opportunities for calming.

What kinds of service-delivery models are available to school-age children?
Special education services for children in elementary and high school may be delivered in a variety of levels, depending on where you live in Canada. These vary greatly even within each province. Each child’s IEP should state that the placement is the least restrictive environment for that particular student.

A school should offer a variety of placement options, from regular classrooms (also known as inclusion), through resource help and self-contained special education classrooms. At the high school level, the placements might include vocational training or work-study settings in the community.

With any setting, placement decisions are discussed at the annual IEP meeting. Placement at one level during a particular academic year does not mean that the child will always be in that placement type. Parents should visit settings that are offered as options in order to be ready to advocate for the setting they believe is most appropriate for their child.

Continuing Therapy

Therapy support services in school
In most schools, both Speech and Occupational Services are often on a “referral only basis.” The therapists are assigned to an area of schools and will have regular visits to the classroom. They will observe and leave recommendations with the teacher and in-class support personnel to implement. How often and what exactly those services are will vary depending on what area of the country you live in. You should find out what services are available for your child as soon as they enter the school system. The request that your child receive these services might have to come from you, rather than the teacher.

Speech and Occupational Therapy
Appropriate special education for the school-aged child should include speech and language therapy and occupational therapy. Such ongoing therapy is often helpful for sensory integration and motor and language development. If this therapy is not provided through the school, you may need guidance in finding private therapy. Goals and strategies must meet the needs of each individual child. Each set of goals and strategies is based upon the individual assessment of the child, ongoing observations of the child in the class, and parental input.

Strategies to aid in speech and language development include some “universal” principles for children with Fragile X syndrome. Calming strategies may need to precede therapy. These may include exercises such as wall push-ups or deep pressure massage. Visual cues seem to be very helpful across the age span for boys. With young children, these cues might include pictures of the day’s activities in sequence, calendars, pictures of classmates and their weekly jobs, and pictures of vocabulary being taught in a unit.

Environmental changes are often essential for the person 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.

Sound levels may also need to be adjusted. Earphones for listening to soothing music or tapes of books may be helpful to some people. Goals and strategies may be designed to help the person with Fragile X syndrome to gradually tolerate more sound. While loud situations may never be the choice of a male with Fragile X syndrome, he may be able to tolerate more auditory input, such that he can sit through school assemblies, big screen movies and noisy restaurants.

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 body about where the child is in space. Donut-shaped cushions may be helpful, but may 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 his body in space. Balance and muscle tone can be worked on through a variety of physical activities: dance, martial arts, sports and physical play. In addition to these goals and strategies using sensory-integration therapy, more functional therapy may be designed with goals for daily living skills and fine motor and oral-motor development.

Fine motor goals may include improvements in writing and drawing, as well as using eating utensils, scissors and other tools. Fine motor goals might also include computer usage, as keyboarding may provide a more legible output for persons with poor handwriting skills.

Speech/Language suggestions should include ones that can be used during regular classroom activities, such as carpet or circle time, to foster pragmatic growth. Children can be coached to help pass out books for example, while asking, “Have you read this yet?” This will foster social interaction and further language opportunities.

Skills that the Speech and language therapists may also help with vocabulary and comprehension of academic subjects. They might provide services in a special education resource centre or self-contained room, where they conduct whole-class and individual lessons. Once again, these might be designed in conjunction with the occupational therapist, special education teacher or other school support. Some speech-language pathologists even go to the playground and lunchroom to offer suggestions on how to play and converse with other children.

Expressive language goals for boys and girls will likely focus on pragmatic skills. Initiating conversations, turn taking, and controlling perseveration and tangential comments are all skills speech-language pathologist can focus on. Children with Fragile X syndrome seem to benefit most from using real-life situations to help their conversational speech, such as message delivery, lunchtime conversation and asking to play a game. Both boys and girls with Fragile X syndrome often need help with overcoming their shyness and anxiety so that they can participate in conversations and social situations.

Expressive language goals for boys may also focus upon vocabulary development for both functional speech and academic subjects. Syntax goals may centre around the development of phrases, sentences, question forms, or other issues with word order. Children with Fragile X syndrome often have a powerful strength in mimicking or imitating the language on TV shows, videos or songs. This imitation skill can be used to help them learn whole phrases or sentences and apply them appropriately.

Speech goals often include specific work on intelligibility, with emphasis on sounds in isolation, words and sentences. Such work may include oral-motor exercises for strengthening lip and tongue control. Speech therapists can also help with cluttering – the tendency to repeat syllables, words and phrases. Some of the techniques used for stuttering (e.g., slow, easy speech) can be very helpful.

Auditory processing goals should focus on the specific areas of weakness, whether in attention, perception, memory or conceptualization. Speech-language pathologists may work with teachers to help them slow their rate of speech and emphasize words clearly with children who have slow processing. Visual cues can be very helpful to focus attention and aid memory. Higher-level conceptual goals can be designed around cause and effect, prediction and problem solving, using stories, academic subjects and real-life situations.

Parents can contribute to goal development in speech and language by thinking through and listing speech and language needs at home. You may have specific topics for vocabulary units that you believe will be useful for your child. You may also have valuable information about conversational abilities at home. Goal setting should be a joint project of the professional staff and parents.

Social skills

Social intervention may help decrease the risk of later social dysfunction. In the school setting, social stories can be used to describe a behaviour that needs to be changed, with appropriate solutions for the child or adult to try. Some children with Fragile X syndrome may see a behaviour management therapist or school counsellor in order to set social or behavioural goals.

Activities in the community, such as going to church, restaurants and movies, and attending other crowded, unfamiliar places may pose challenges for families. Careful planning, beginning with descriptions at home of the activities and sequences that will happen, can help the child or adult with Fragile X syndrome to anticipate the situation. Visual cues, such as menus, church bulletins or maps, can also help a parent explain what will happen in an upcoming event.

Medications may be necessary for attention deficit hyperactivity disorder (ADHD) and/or for anxiety or depression. Aggressive behaviors and outbursts, seen in some adolescents and adults with Fragile X syndrome, can often be inhibited with the use of medication. Pediatric neurologists and therapists who are familiar with the syndrome can evaluate and treat these symptoms with appropriate medication. Counselling and behavioural therapies often need to accompany medical intervention.

Adolescent 13 – 20 Years

High School and the transition to adulthood

Adolescents continue in special education until they are 21 years old or until they graduate from high school, whichever comes first. As children with Fragile X syndrome reach middle school and high school, their programming and least restrictive environment may change, but they still have IEPs and annual reviews.

Continuing academic and life skills assessment should be part of the IEP from the early high school level. Such assessment can be provided to students in middle or high school who are beginning to plan their lives after graduation.

How might a high school program be designed for an adolescent with Fragile X syndrome?

The high school program for the adolescent with Fragile X syndrome must still comply with the law’s requirements for an appropriate education in the least restrictive environment. The program might consist of a mixture of “regular” high school classes and specialized programs, designed to foster future independence.

Parents and team members must decide at this age level what academic skills should continue to be a focus and what functional living skills should be emphasized. For example, a high school boy with Fragile X syndrome might take gym and art with the regular high school program, reading and math in a special education class, and also be enrolled in a program where he is in the community at a job for part of the day. Students receive high school credit for jobs in the community, under supervision. Such jobs might be as varied as in-hospital mail delivery, landscaping, assisting at the zoo, working in a grocery store, preparing food, assisting in a nursing home or cleaning. There are many possibilities.

Students in such programs also receive specific vocational training at the school to educate them about important job-related behaviors, such as punctuality, grooming and communicating. Some boys with Fragile X syndrome might also benefit from independent living classes. These might include skills such as handling cooking, laundry, housekeeping and public transportation.

Girls with Fragile X syndrome, who may have learning disabilities in math and pragmatic skills, also qualify for special education services at the middle and high school level. They should also receive vocational assessment and guidance that would lead to college programs, post-high school vocational training and/or community employment

Ongoing Therapy

Goals and strategies may need to be developed in a variety of areas for people with Fragile X syndrome. The characteristics described (hyperarousal, hypoarousal, tactile defensiveness, and fine motor disorders) may all need to be addressed, particularly with boys and men. Occupational therapists can design goals for calming, movement, fine motor development, and oral-motor development. They can also provide a number of strategies for altering the environment of the home, school or workplace in order to decrease sensory overload.

Environmental changes are often essential for the person 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 person gradually tolerate more visual information or brighter lighting.

Sound levels may also need to be adjusted. Earphones for listening to soothing music or tapes of books may be helpful to some people. Goals and strategies may be designed to help the person to gradually tolerate more sound. While loud situations may never be the choice of a male with Fragile X syndrome, he may be able to tolerate more auditory input, such that he can sit through school assemblies, big screen movies and noisy restaurants.

Seating adaptations may need to be made to help the male with Fragile X syndrome maintain an upright posture and focus. School desks and chairs may not provide enough feedback to the body about where their body is in space. Donut-shaped cushions may be helpful, but may draw too much attention in an inclusion setting. An orthopedic back support on a chair may be more appropriate and give enough feedback.

Movement therapy is important to help the person with Fragile X syndrome to have a good sense of his or her body in space. Balance and muscle tone can be worked on through a variety of physical activities: dance, martial arts, sports and physical play.
In addition to these goals and strategies using sensory integration therapy, more functional therapy may be designed, with goals for daily living skills and fine motor and oral-motor development.

Social Skills

Social intervention may help decrease the risk of later social dysfunction. In the school setting, social stories can be used describe a behaviour that needs to be changed, with appropriate solutions for the child or adult to try. Some children with Fragile X syndrome may see a behaviour management therapist or school counsellor in order to set social or behavioural goals.

Activities in the community, such as going to church, restaurants and movies, and attending other crowded, unfamiliar places may pose challenges for families. Careful planning, beginning with descriptions at home of the activities and sequences that will happen, can help the child or adult with Fragile X syndrome to anticipate the situation. Visual cues, such as menus or church bulletins, can also help a parent explain what will happen in an upcoming event.

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 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 syndrome 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 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.

Puberty / Sexuality

Students with Fragile X syndrome are hardly immune to the much-chronicled hormonal awakening of the adolescent years. Complicating the matter is their generally greater tendency toward obsessive behavior, which can understandably be heightened when normal sexual curiosity asserts itself at this delicate age. As with other teenagers, open discussion of sex education topics helps de-stigmatize normal sexual feelings. Teenagers with Fragile X syndrome also respond well to rules and clear delineations of what is expected in “mature” behaviour, so inappropriate actions can often be curtailed with appeals such as, “That is what younger students would do, but now that you’re 14, it’s no longer acceptable.”

Developing appropriate social/sexual behaviors is critical in the high school years, because young people with Fragile X syndrome must experience a degree of peer acceptance in order to build their self-confidence and credibility for work. Dating, school dances and extracurricular activities become the areas where these students face many of their most challenging issues. Although this is likely just as true for all students in the highly sensitive area of sexuality, there is no underestimating the more complex challenges faced by students with Fragile X syndrome, since they often lack the emotional maturity and confidence that can steel them to the frustrations, questions and rejection typical of this age. Nevertheless, with guidance and patience, it is possible to teach people with Fragile X syndrome how to respond to issues of privacy and sexual expression.

Adulthood 21+ Years

Challenges at this stage are an extension of many issues discussed in the previous sections. The transition to adulthood is difficult for all individuals, but particularly so for individuals with Fragile X syndrome. Programs for adults with developmental disabilities usually provide a range from minimal to more extensive supervision, so that the adult with Fragile X syndrome can live in an apartment setting and perform a job each day.

Daily living skills are taught in school and in most adult programs. Some adult males learn how to drive, but the vast majority learn to use public transportation to travel to jobs or visit family and friends. Vocational training is important for utilizing cognitive abilities optimally at work, and this training should be started in high school. Studies have demonstrated that adaptive behaviors in Fragile X syndrome continue to improve even into adulthood, with particular strengths in daily living skills.

Local support agencies can provide ongoing support for programming in the vocational area. Behaviour problems in the workplace should be discussed with the patient’s physician and therapist.

Once an adolescent has graduated from high school, there is no guaranteed program that takes up where school leaves off. Each community provides a variety of programs, and they are not consistent from province to province. You can contact your local Community Living and find out about what services and programs are available in your area. For comprehensive information on the transition from adolescence to adulthood, visit  http://www.fragilex.org/living-with-fragile-x/adults-with-fragile-x-syndrome-book/

Financial Planning

People with Fragile X Syndrome have a normal life expectancy, so parents and families have to make long-term plans to provide for their needs. You can contact your local support agencies for guidance in this area. There are workshops and seminars held to guide and advise in the area of financial planning. You may also want to look at a Personal Planning Guide. Contact your Provincial Ministry of Community and Social Services for a copy.

In Canada, the Registered Disability Savings Plan (RDSP) helps parents and others save for the long-term financial security of a person with a severe disability. In general, any person under the age of 60 who is eligible for the Disability Tax Credit (Disability Amount) and resident in Canada can establish an RDSP. If the person is a minor, their parent or legal representative may establish the RDSP for their benefit.

The lifetime contribution limit for an RDSP is $200,000, with no annual limit. Anyone can contribute to the RDSP with the written permission of the plan holder. Contributions are not tax-deductible and are not included in income when paid out of an RDSP. Investment income earned in the plan accumulates tax-free. However, grants, bonds and investment income earned in the plan are included in the beneficiary’s income for tax purposes when paid out of the RDSP.

For more information on RDSPs, visit the Canada Revenue Agency Web site at or call 1-800-959-8281 (TTY users call 1-800-665-0354).

Housing

Article 19 of the UN Convention on the Rights of Persons with Disability states: “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.”

The range of residential services varies depending on the provider agency and province you live in. For example, residential services may range from independent apartments with “follow-along” counselling to supervised apartments to group homes, with some agencies providing the full range of services, and some not. Some agencies provide both residential and vocational/day care services, others only one (meaning the person and family must deal with two sets of providers). Securing some needed services may mean shifting from one agency to another if different agencies offer different but equally desirable services. Every person with developmental disabilities should be in a situation that is as close as possible to what is “normal” for a person of that age, and in a residential and vocational environment that least restricts his or her freedom and gives the best support for that individual.

A person may be quite independent in self-care and daily living skills and fully able to live in an independent apartment, but not have the same level of skills and independence at work. This situation would require a more flexible approach to residential and vocational needs than some programs are capable of. For people with more limited cognitive functioning, or with limited tolerance for change and uncertainty, a more structured environment (which may look more restrictive to an observer) may actually permit the person more comfortable functioning and therefore access to more activities than he or she could tolerate in a less structured setting.

Transition to a residential program should ideally be gradual, analogous to how most people spend longer and longer time away form home until they are on their own. In fact, residential programs vary widely in their approach to new residents. One method of transition that families may find helpful is to seek respite services at a residential agency before the individual moves in. This affords new residents the opportunity to both test the environment and meet other residents and caregiving staff.

Unfortunately, there is a great shortage of residential services, so parents and family members have to start planning early, inform themselves about available options and advocate vigorously for the person with Fragile X Syndrome.

Work Options

As with housing, the range of services varies. For example, vocational programs can range from competitive employment with job coaching services to supervised crew labor and sheltered workshop employment to adult day care. In the case of persons with more limited cognitive functioning, or with limited tolerance for change and uncertainty, a more structured environment (which may look more restrictive to an observer) may actually permit the person more comfortable functioning and therefore access to more activities than he or she could tolerate in a less structured setting.

In general, people with developmental disabilities should be in situations that are as close as possible to what is “normal” for a person of that age, and in vocational environments that least restrict their freedom.

Summary
The chances are that none of the above is sufficiently specific to apply to any one person or family. There is obviously no one best way to approach these issues or solve these problems, no ideal program or all-encompassing collection of programs. However, the likelihood of success in adulthood can be maximized by attention to family and community systems, active intervention and advocacy, ongoing family involvement, the cultivation of friendships, the identification of dedicated and caring people willing to work with individuals and families, and identifying and working with professionals knowledgeable or interested in Fragile X syndrome.

Some of the above material was excerpted from: Adulthood– Andrew Levitas, M.D. Medical Director, Division of Prevention and Treatment of Developmental Disorders,University of Medicine & Dentistry of New Jersey/SOM

Additional Resources:

Transition to Adult Services for Individuals with Fragile X Syndrome from the National Fragile X Foundation

Partners for Planning P4P Planning for beyond graduation

Helpful tips

The Fragile X Tool Box

What is The FX Tool Box? It’s a regular feature in our newsletter, filled with suggestions, helpful hints and coping strategies, tools to make living with Fragile X easier! We invite you to send in your favourite “Tools” to HERE for printing in future newsletters and be posted to this section of the website. If you have any neat tricks, big or small, we’d love to hear from you! We’ll be updating the Tool Box on a regular basis so please keep checking back.

Buy socks with coloured heels and toes to help your child know how to pull them on correctly.

Hang outfits together in the closet so your child knows what clothes go together and can get dressed more independently (see below for when kids get even older!)
Mom B.B. suggests: The store HomeSense sells canvas sectioned hangers that you would usually put shoes or hats in. We stuff a day’s worth of clothes in each cubby box – underwear, socks, jeans, t-shirt and hoodie – and there are 6 compartments so it covers every day of the school week. My son just takes out an outfit and gets dressed. He no longer spends hours getting dressed, has a sense of independence, and as a bonus – his dresser drawers don’t get messed up!
Going to the dentist? Take some time to educate the people at the office about Fragile X syndrome. Book extra time and take along a Game Boy type of toy or earphones plugged into music or go to a dentist that has a tv/dvd player mounted up high on the wall to distract them.
When trying to teach something new or difficult, take frequent breaks and use a very simple task they have success with (like a puzzle they have mastered) in between the difficult tasks. Your student will gain confidence and be ready to go back and tackle the tougher one.
Fill a wheel barrel with water in the summer and let them carry it back and forth across the lawn – the lawn gets watered, the weight and pressure is calming and if they get wet, who cares – how refreshing! Our son carries his little sister around in ours and they both have a blast!
In school, if a child looks like they need a break, a teacher or aide can ask the child to carry some heavy books to the office to “be checked”. The heavy books can be calming to carry and the change of pace from the classroom can be a good thing.
Get a bean bag chair for them to relax in or simply watch TV.
Small but silent vibrating toys are great help during school assemblies or whenever they are expected to sit quietly for a long period of time.
If you can find one, purchase a tape player with music cassettes that they can play/rewind to their hearts content.
Freezies seem to help with the oral self-stim. Make your own out of watered down juice so they are healthier than store bought ones.
Put a dot of the inside, insole of their boots or shoes with bright red nail polish (make sure you let it dry completely) and tell them that the red dots have to be together (side by side) before they put on their boots/shoes so that they go on the correct feet. This has been very helpful and gives a sense of independence!
Use social stories with pictograms. Social Stories are personalizable children’s books that engage children in a fun and creative way while addressing social skills, safety skills, and communication skills.
We created quite a few social stories and they really helped. Some of the social stories we used: How do I ask someone to play with me? and What are the rules at Recess? What is great about social stories is that your child’s own name and names of others, like a teacher, helper or sibling, is printed right on the pages. You can personalize them to help in almost any situation. If you want to learn more about social stories, there are free ones available on the internet at: www.sandbox-learning.com
Use praise for anything your child does well. As you move through your day, tell your child how happy you are that they listened, followed directions or were quiet while you were on the phone. We are quick to criticize when they don’t behave, so make it a habit to be equally quick to sing their praises. This shows your child they will get as much or even more attention for behaving than when they don’t.
Frustrated with shoe laces? Tired of the time it takes to do them up? Purchase shoes that are velcro close only. If you can’t find them in larger sizes, since they can be difficult to find, use bungee shoe laces. They are available at major shoe retailers, come in various colours and work very well!
To reduce anxiety causing sounds such as noise generated while on the bus or in a crowd, let your child wear headphones and listen to music that they enjoy. They can focus on one sound source and they have control over the volume and the music selection. There are lots of different headphone styles available to suit your child.