Students With Disabilities Issue: Why It's Important To Understand What Is Fragile X Syndrome

Understanding the genetics of Fragile X Syndrome is the key to understanding why girls and boys differ in degree of learning disability. Research suggests that the protein (FMRP) is especially important during brain development and that a loss of function can impact early information processing and developmental pathways resulting in atypical development from infancy and beyond. Typically, girls with FXS have milder levels of Intellectual difficulties than boys because only one X chromosome has been “turned off”. Thus, the other undamaged chromosome can compensate or buffer the effects of the mutated gene on the affected chromosome and will still produce some FMR protein.

In contrast, there is only one X chromosome for boys so there is no way to compensate for the lack of the protein. Consequently, boys are significantly more impaired than girls.

Researchers at the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC), recently published findings from a study on the financial expense of caring for a child living with FXS as compared to caring for a child with Autism or Intellectual Disability.

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Research suggests that children with Fragile X Syndrome may have more functional limitations, behavioral issues, and complex healthcare needs than children with Autism or Intellectual Disability only. Additionally, children with FXS have a higher percentage of irritability and poor ability to learn, understand, and pay attention. These various factors can increase the amount of time and attention needed to care for a child with FXS. Regardless of whether the child has FXS, Autism, or Intellectual Disability, caring for a child with anxiety, seizures, greater irritability, or limits in thinking, reasoning, and learning ability was associated with greater financial and employment impact on the child’s caregiver.

The National Fragile X Foundation offers free monthly webinars to address some of the most frequently asked questions about Fragile X Syndrome. Experts offer tips and other information for family members, caregivers and professionals. The Fly with Me Fund provides financial assistance for families to travel to a Fragile X clinic to receive the most appropriate evaluation and treatment services. Parents often consider medications to treat behavioral and mental health conditions associated with Fragile X syndrome. The child’s physician can discuss the benefit from medications that treat ADD, ADHD and other attention disorders for children with FXS. For children facing more significant psychiatric challenges, a number of available “anti-psychotic” medications may be of value to parents looking into addressing behavioral and mental conditions. The National Fragile X Foundation offers many useful resources to address aspects of daily life that can be challenging for people with Fragile X syndrome.

Like any child with intellectual disability, children with FXS often have emotional, sensory and social behaviors that are mainly based on the child's frustration or anger because they lack the ability to communicate and be understood by others. These issues can be addressed in the classroom with the same strategies used for the management of behavioral issues. It is essential that the teacher have clearly stated rules and procedures with established consequences that are reviewed regularly with students. Appropriate behavior should be acknowledged and praised and behavior plans can be established when necessary, following up with appropriate incentives and rewards. All children disabled or not need consistent classroom management. The teacher should establish this at the beginning of the year while maintaining the same expectations throughout the school year. A well established and disciplined learning environment will provide a reassuring sense of structure for special education students.

Some useful classroom strategies for teachers to put in place include using hands-on activities involving a variety of senses, alternating quiet and active activities and being flexible in demands for sitting still. Music and movement can be used to motivate and teach concepts, and used when transitioning from one activity to another. It is imperative for the teacher to build on the strengths and interests of the individual child, allowing for choice, a personal work space, and an area where the child can go to calm down can increase more desired behaviors. Most children with Fragile X Syndrome have similarities with autism, therefore it is helpful to incorporate appropriate strategies, concentrating on social skills, paying attention, interaction with others and play.

The National Fragile X Foundation has valuable online resources for educators which includes a lesson planning guide with a wealth of practical information including background facts on FXS. It includes descriptions of behavior and learning styles, discussion of educational and community resources, and sample lesson plans for various developmental levels. The website is filled with practical ideas and strategies and, ideas that will facilitate the inclusion of children with Fragile X Syndrome in the general education classroom.

The following are strategies for teachers to be useful when education children with FXS include (but are not limited):

• Provide a calm, quiet environment, with built in breaks;
• Use small groups or one on one;
• Explore use of calming strategies with Occupational Therapist that is trained in sensory integration;
• Give ample time for processing or alternative ways to respond;
• Use technology adaptations when necessary;
• Visual schedule and visual cues;
• Use reinforcements for positive behaviors.