School Age 4 – 12 Years
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.
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 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:
Here are brief explanations of each aspect of the IEP:
- 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
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
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 chid?
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.
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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.
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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.
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Many of the strategies used for children with ADHD are appropriate for those with Fragile X syndrome, since most will have ADHD symptoms. These include: seating near the teacher and away from distractions; use of a private carrel at times; short tasks with the opportunity to move around often; visual cues for sequences of events; and interactive lessons that do not always involve sitting and listening.
Transitions and changes in schedule are especially difficult and require careful planning by teachers and parents. Pictured schedules on the board or on velcroed cards can be used to lay out the sequence of the day. Changes, such as an assembly, can be written out or pictured and inserted in the proper sequence. In some unusual circumstances (such as a loud assembly), rather than attend the event, it may better for the child to have time in a quiet room with calming items such as a beanbag chair and videotape.
Intervention for inappropriate behaviour should always be planned with awareness of issues relating to sensory processing. Strategies designed to help achieve behaviour goals should include attention to the environment (lights, noise levels, activity level, etc.) and awareness of the sensory overload levels of each particular child.
In addition, an Applied Behavioural Analysis (ABA) approach is necessary for many behavior issues, especially in Fragile X Syndrome children with autism, to deal with issues such as tantrums, aggression, self-injury and inappropriate expressions of frustration in non-verbal or low-verbal children.
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Routine dental care is very important for children with Fragile X syndrome. They often have crowded teeth, that might be due to a narrow face and jaw, 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 prophylactic antibiotic may need 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 syndrome.
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