Fragile X Syndrome (cont.)
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.
Viewers share their comments
Fragile X Syndrome - Educational Options
Question: Do you have a child with Fragile X? Please discuss the educational opportunities in which your child has participated.
Fragile X Syndrome - Social and Emotional Issues
Question: How does your child with Fragile X deal with social situations? Please share how you cope with your child's emotional issues.
Fragile X Syndrome - Experience
Question: Please describe your experience with fragile x syndrome.
Fragile X Syndrome - Symptoms
Question: What symptoms do you or your loved one experience from fragile X syndrome? How do you cope?
Fragile X Syndrome - Carrier
Question: Did you ever undergo genetic testing to see if you are a fragile X syndrome carrier?