A variety of professionals can help individuals with Fragile X and their families deal with symptoms of the disorder. Such assistance is usually most effective when provided by health care professionals experienced with Fragile X.
- Speech-language therapists can help people with Fragile X to improve their pronunciation of words and sentences, slow down speech, and use language more effectively. They may set up social or problem-solving situations to help a child practice using language in meaningful ways. For the minority of children who fail to develop functional speech, this type of specialist may work with other specialists to design and teach nonverbal ways of communication. For example, some children may prefer to use small picture cards arranged on a key ring to express themselves; or they may learn to use a hand-held computer that is programmed to “say” words and phrases when a single key is pressed.
- Occupational therapists help find ways to adjust tasks and conditions to match a person’s needs and abilities. For example, this type of therapist might teach parents to swaddle or massage their baby who has Fragile X to calm him or her. Or the therapist might find a specially designed computer mouse and keyboard or a pencil that is easier for a child with poor motor control to grip. At the high school level, an occupational therapist can help a teenager with Fragile X identify a job, career, or skill that matches his or her interests and individual capabilities. 17
- Physical therapists design activities and exercises to build motor control and to improve posture and balance. They can teach parents ways to exercise their baby’s muscles. At school, a physical therapist may help a child who is easily over-stimulated or who avoids body contact to participate in sports and games with other children.
- Behavioral therapists try to identify why a child acts in negative ways and then seek ways to prevent these distressing situations, and to teach the child to cope with the distress. This type of specialist also works with parents and teachers to find useful responses to desirable and undesirable behavior. During puberty, rising and changing hormone levels can cause adolescents to become more aggressive. A behavioral therapist can help a teenager recognize his or her intense emotions and teach healthy ways to calm down.
The services of these specialists may be available to pre-school and school-aged children, as well as to teens, through the local public school system. In a school setting, several specialists often work together to assess each child’s particular strengths and weaknesses, and to plan a program that is specially tailored to meet the child’s needs. These services are often free. More intense and individualized help is available through private clinics, but the family usually has to pay for private services, although some health insurance plans may help cover the cost.
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