The Challenge of Fragile X Syndrome – It Takes a Team
Fragile X Syndrome, an inherited condition associated with learning, behavioral, and intellectual disabilities, presents many challenges to patients, parents, care givers, and educators.
Finding the right combination of school, therapies, behavior management, and medication for each child to operate at his highest possible level takes time, dedication, and patience, but provides rewards for the child and his family.
Kanah, a six year old boy, arrived, happy and alert, first thing Saturday morning for his appointment with Stramski Center’s psychologist, Christina Aguirre-Kolb, and Dr. Marcia Braden, a renowned Fragile X expert. Kanah has a full genetic mutation for Fragile X syndrome. Typical for this condition, he has cognitive struggles and verbally cannot express himself with the same ability as his peers. His mother said his elementary school was offering them their choice of schools for Kanah as he had demonstrated injurious behavior to others and himself, and was no longer welcome at this, his second school for Kindergarten. Evaluating Kanah that day, the psychologists learned that he was quite capable, willing to respond to academic instruction, had solid bases in some academic activities, and responded to redirection. In many respects, he was a model student. Kanah began his third school in December. The special, non-public school was supposed to meet all of his needs, but after only a few weeks, Kanah’s mother was once again asked to remove him from the school. Ms. Aguirre-Kolb volunteered to visit the school with the school district’s Director of Special Education. Unfortunately, they found that he school staff was not well-trained in dealing with children like Kanah, and he struggled in its punitive, oppressive environment. Kanah is now doing better in his fourth school, where they are using the tips, techniques, and resources for further information that the Stramski Center offers.