Fragile X Syndrome (cont.)
Is there a cure for Fragile X syndrome?
Although research continues and knowledge about Fragile X and its characteristics grows, there is no cure for Fragile X at this time.
Are there treatments for Fragile X syndrome?
Currently there is no definitive, single treatment for Fragile X. However,
there are a variety of ways to help minimize the symptoms of the condition.
Children with Fragile X who receive appropriate education, behavioral or
physical therapy, and medication have the best chance of using their individual
capabilities and skills. Even those with significant mental retardation can
learn to master many self-help skills.
One important factor in developing a child's long-term potential is early
intervention. The sooner a child begins to get help, the more opportunity for
learning. Because a young child's brain is still forming, early intervention
gives children the best start possible and the best chance of developing their
full potential. Even so, no matter when a person is diagnosed with Fragile X,
it's never too late to benefit from treatment.
Some treatment options include:
- Educational options
- Therapeutic options
- Medication options
Educational Options
Most children with Fragile X, including those with severe mental retardation,
are guaranteed free, appropriate public education under federal law. Public Law
105-17: The Individuals with Disabilities Education Act-IDEA (1997) makes it
possible for children with disabilities to get free educational services and
educational devices to help them learn as much as they can. Each child is
entitled to these services from age three through high school, or until age 21,
whichever comes first. Also, every state operates an early intervention program
for children from birth to age three; children with Fragile X should qualify for
these services. The law also states that children must be taught in the least
restrictive environment, appropriate for that individual child. This statement
does not mean that each child will be placed in a regular classroom, but
instead, that the best combination of one-to-one tutoring, small group work, and
regular classroom work will be arranged.
Because not all children or adolescents with Fragile X have mental impairment or special needs, a medical diagnosis of Fragile X does not guarantee access to special education services. The child must have certain cognitive or learning deficits. Parents can contact a local school principal or special education coordinator to learn how to have their child examined to see if he or she qualifies for services under the IDEA.
If a child qualifies for special services, a team of people, including the child's parents or caregivers, teachers, school psychologist, and other child development specialists, will work together to design an
Individualized Education Plan (IEP) for the child. The IEP includes specific learning goals for that child, based on his or her needs and capabilities. The team also decides how best to carry out the IEP, such as making choices about classroom placement for the child, determining any devices or special assistance the child needs, and identifying the developmental specialists who will work with the child.
A child with Fragile X should be evaluated and re-evaluated on a regular basis by his or her special services team. In this way, the team can determine how the child is doing and whether any changes are needed in his or her treatment (for instance, changes to the IEP, changes in classroom placement, or changes in other services) to ensure the child is getting the best possible care.
In general, there are three classroom placement options for a child with Fragile X, based on his or her specific abilities and needs:
- Full inclusion in a regular classroom. The child spends the full
day in the regular classroom rather than just among children with special
needs. This situation is sometimes called "mainstreaming." Specialists work
with the child in the classroom, with other students present. There may be
an aide assigned to help the child with certain kinds of tasks.
- Inclusion with "pull-out" services. In this type of placement,
the child spends most of the day in the regular classroom. However, for part
of the day, he or she attends small-group classes with one or more
developmental specialists, such as a speech-language therapist or a physical
therapist. This arrangement gives the child exposure to children who do not
have special needs, as well as more individual attention to his or her areas
of special needs
- Full-time, special education classroom. Some children with
Fragile X may do better in a smaller special education class than in a
regular classroom. Special education classrooms usually have fewer children
and offer more individualized attention from the teacher. Such programs may
be offered at the school or in central locations that serve a larger area.
Regional special education centers often have facilities and equipment
designed for children with special needs. For some children, a special
school for children with similar disabilities may be the best option.
Placement decisions should be based on each child's needs and abilities. In
most cases, these decisions require a balance of various priorities to maximize
the chances for the best possible outcome for the child.
Next: Therapeutic options »
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