Due to the COVID-19 global pandemic, the Families For Fragile X foundation has decided to postpone our annual walk until further notice. As soon as our event is rescheduled we will make an announcement. Thank you for your continued support!

Treatments

Currently there is no cure 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 impairment 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.

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.

Therapeutic Options

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. The goals of a speech therapist for a child with fragile X should be to facilitate social play and create consistent patterns of nonverbal communications. They should establish basic imitation and imitation of sounds and words. Other goals should be to increase communicative attempts (with or without prompting) and increase turn-taking reciprocity.

Children with Fragile X need to work on comprehension and interaction. This can be done by following the child's lead in play and joining them in play. Also, encourage games for turn taking (peek-a-boo, ball rolling, etc.) It is important to exaggerate words and phrases.

Occupational therapists (OT) help find ways to adjust tasks and conditions to match a person's needs and abilities. It is essential that boys and many girls with fragile X be assessed by an OT. The OT should use the sensory integration approach that has several goals. The child should have appropriate visual attention. Their reactions to touch should be appropriate. There should be pleasure in response to input. The child should accept emotional warmth from others and engages with others. The occupational therapist should teach the child how to settle and soothe himself. The child will play with toys appropriately and imitate others in play and interaction. Finally, the child should move and explore their environment.

Sensory issues may affect every area of development for both boys and girls with Fragile X. Cognition, speech, and behavior cannot be assessed or treated without attention to sensory issues. Disruptions that are sensory are controlled by organizing a calm, alert, and affectively positive state otherwise the nervous system shuts down! A sensory diet is an occupational therapy intervention strategy devise to attain and maintain appropriate arousal states throughout each day. A sensory diet consists of a carefully planned program of specific sensory-motor activities that are scheduled according to each child's individual needs and each families schedule and resources. A sensory diet can help sensory defensiveness.

The sensory diet is based on the notion that controlled sensory input can affect one's functional abilities. The key points of a sensory diet include input to touch, pressure, muscle and joint receptors, movement input, oral tactile/proprioceptive input, respiration, and auditory/rhythm input. An occupational therapist trained in sensory integration has the expertise to know how to use these principles to design an appropriate sensory diet.

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. Behavioral problems are common in children with fragile X syndrome and are often of more concern to educators and parents than any other area of functioning. In order to develop effective intervention approaches, behavioral problems must be seen in the context of all areas of development: cognitive, sensory, and language. 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.

Alternative Options

Hippotherapy - American Hippotherapy Association Inc. (AHA, Inc.) promotes the use of the movement of the horse as a treatment strategy in physical, occupational and speech therapy sessions for people living with disabilities. Hippotherapy has been shown to improve muscle tone, balance, posture, coordination, motor development as well as emotional well-being. The official website is: www.americanhippotherapyassociation.org/

Music Therapy - Music Therapy is an established healthcare profession that uses music to address physical, emotional, cognitive, and social needs of individuals of all ages. Music therapy improves the quality of life for persons who are well and meets the needs of children and adults with disabilities or illnesses. Music therapy interventions can be designed to:

Research in music therapy supports its effectiveness in a wide variety of healthcare and educational settings. Visit their website at: www.musictherapy.org or: www.floridamusictherapy.com

Art therapy - Art therapy is an established mental health profession that uses the creative process of art making to improve and enhance the physical, mental and emotional well-being of individuals of all ages. It is based on the belief that the creative process involved in artistic self-expression helps people to resolve conflicts and problems, develop interpersonal skills, manage behavior, reduce stress, increase self-esteem and self-awareness, and achieve insight.

Art therapy integrates the fields of human development, visual art (drawing, painting, sculpture, and other art forms), and the creative process with models of counseling and psychotherapy. Art therapy is used with children, adolescents, adults, older adults, groups, and families to assess and treat the following: anxiety, depression, and other mental and emotional problems and disorders. Art therapy programs are found in a number of settings including hospitals, clinics, public and community agencies, wellness centers, educational institutions, businesses, and private practices.

The website for art therapy is: www.arttherapy.org/about.html

Play Therapy - Initially developed in the turn of the 20th century, today play therapy refers to a large number of treatment methods, all applying the therapeutic benefits of play. Play therapy differs from regular play in that the therapist helps children to address and resolve their own problems. Play therapy builds on the natural way that children learn about themselves and their relationships in the world around them. Through play therapy, children learn to communicate with others, express feelings, modify behavior, develop problem-solving skills, and learn a variety of ways of relating to others. Play provides a safe psychological distance from their problems and allows expression of thoughts and feelings appropriate to their development.

APT defines play therapy as "the systematic use of a theoretical model to establish an interpersonal process wherein trained play therapists use the therapeutic powers of play to help clients prevent or resolve psychosocial difficulties and achieve optimal growth and development."

Their website is: www.a4pt.org/ps.aboutapt.cfm