Fragile X Program
About us
The Fragile X Program at Boston Children's Hospital believes that appropriate support and understanding can go a long way in motivating individuals with Fragile X to persevere in the face of difficulty and feel confident in embracing their strengths.
We know that individuals with Fragile X encounter challenges in understanding and processing information in their environment. The way their mind functions can also affect the emotions they experience, their behavior and how they react in certain situations. For this reason, we make every effort to acknowledge and respect the special limits that individuals with Fragile X may have.
Hyperactivity and short attention span are common characteristics of Fragile X that we take into account by breaking our evaluation process into two separate days. This “mental break” eases a child’s anxiety and agitation and allows us to gain a more accurate understanding of their baseline intellect and behavior.
Evaluations:
Many individuals with Fragile X experience difficulties with learning to varying degrees. These learning impairments are caused by abnormalities in the brain’s functioning that make it difficult for them to think and learn in the same way as others do. Imagine that somebody told you that from this day forward, you must use your non-dominant hand to write. It would be extremely difficult because your brain has already set in place a specific system of functioning that feels perfectly normal to you. Similarly, individuals with Fragile X may feel quite motivated and competent until they try to complete a task using an approach that feels both unfamiliar and frustratingly ineffective.
Experts in the Developmental Medicine Center at Children’s who specialize in evaluating intellect and diagnosing developmental disorders are a central component of our Fragile X Program.
Many individuals with Fragile X exhibit autistic-like features, such as poor eye contact, hand biting, hand flapping and hypersensitivity to their environment. Members of the occupational therapy team at Children’s observe these behaviors and recommend ways that can help children decrease the stress of sensory stimulation.
Treatment
We know that the best treatment approach is one specifically designed for each child. That’s why the clinicians who take part in your child’s evaluation come together as a team after the visit to discuss their own unique perspectives. This collaborative effort allows us to develop an integrated set of recommendations for the child’s school as well as advice for his or her primary care physician.
