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.
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.
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
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.
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. Pencils with extra grips, or a specially shaped mouse for the computer could be recommended.
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.
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.
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.