An Elementary Student
with Fragile X Syndrome

Grey is a tall, athletic eight year-old with fragile X syndrome. With strangers, Grey is extremely shy and tends to avoid making eye contact, but those who know him well love his light-hearted sense of humor and his devotion to the world of sports. Grey is an avid spectator, card collector, and enthusiastic participant in any athletic activity involving a ball. He follows professional baseball and football closely with his dad. Although he cannot reliably recite the days of the week, he always knows when it’s a game night. Grey especially likes umpires and referees, perhaps a reflection of his need for routine and order in most aspects of his life. For example, Grey notices immediately if his class misses any part of their morning routine and interrupts his teacher to remind her if they need to send the lunch count to the cafeteria or post the weather report. He also gets upset if they don’t get to computer lab or recess on schedule and repeatedly asks, “Time to line up?”

Grey’s anxious temperament was evident to his parents even as an infant. Ellen and Doug recall that Grey startled easily and always cried when anyone other than a family member picked him up. As a toddler, he had a difficult time separating from Ellen any time she left him at the mother’s morning out program at their church. He was fearful and clingy in new situations and cautious in the way he explored toys and new places. His parents weren’t overly concerned though, since he was meeting his motor milestones at the usual times. He sat at 7 months and was walking by 13 months of age.

Ellen and Doug grew concerned about his development when he turned two and still wasn’t talking. His older sister was talking by the time she was a year old. Ellen had voiced their concerns to Grey’s pediatrician and not long after, she received a call from her sister whose child had just been diagnosed with fragile X syndrome. After reading a brochure provided by her sister’s genetic counselor, she decided to have Grey tested. Grey was diagnosed with the full mutation of FXS when he was 30 months of age.

Socially, Grey has come a long way. When he was younger, his social anxiety was so high that he often hid in his room when a new person came to the house. Now he no longer hides, but, judging by his body language, he often looks like he wants to. Grey used to prefer to play by himself and did not initiate any interactions with his peers. Over the last couple of years he has begun to initiate and join simple games and activities with some of his classmates; and, he also appears to enjoy their company. Grey’s spontaneous language has gradually increased so that now he volunteers information about what he did on the weekend, for example. He still struggles to maintain a conversation topic and has difficulty ending conversations appropriately.

Although Grey is making progress, his parents’ primary concerns still center around his social difficulties. They fear that if his skills do not improve, he will feel left out and lonely as he grows older. When it comes to interacting with other children his age, words often fail him and he has a hard time maintaining eye contact. He fidgets nervously and speaks too quickly, especially when he is meeting someone for the first time.

Another concern is Grey’s negative reaction to school work recently. The work at school seems to be getting harder, and this has been discouraging to Grey. Now he often comments, "I can’t do it,” puts his head down on his desk and does not follow along with the class during tough assignments

Recent School Experiences

Since the first grade Grey has been placed in a self-contained class for children with mild mental retardation, where he has made great progress. There are eight other students in his classroom with a teacher and an assistant teacher. This low teacher to student ratio has provided Grey with the small group instruction he needs to learn. He has language arts, reading, and math in his self-contained class, and like the other students in his class, is mainstreamed in the afternoon for his other subjects, including science, social studies, art, music, PE, and library. He has also been receiving about an hour of occupational therapy and two hours of speech therapy per week since the first grade. He sees a private tutor for an hour a week as well.

When Grey entered the first grade he had a hard time adjusting to all these arrangements. He was often quiet and just observed during free time rather than involve himself with peers. Some days he resisted transitioning to the regular classroom in the afternoon to the point of becoming tearful. But after two and a half years in the same self-contained classroom Grey appears more comfortable at school. Now he joins his classmates for a game of kickball rather than shooting baskets alone.

Grey has made a lot of progress in recent years, academically and socially. In the first grade, he resisted most academic activities because they were difficult for him. Now a third grader, Grey’s ability to read letters and words and his knowledge of spelling, punctuation, and grammar are at a mid-first grade level. His ability to solve early counting and math problems is at a kindergarten level. His teachers have discovered that he does best when the information is tied to “real life” situations using hands-on materials rather than work sheets. He is especially motivated when lessons can be related to sports in some way. Grey works best in an environment that is consistent and structured because he is impulsive and does not respond well to change. He works enthusiastically when he is successful and earns rewards, but can become very anxious when subject matter or tasks are difficult for him. Despite medication and environmental accommodations, Grey still struggles with over-activity that breaks his concentration. He is presently taking 20 mg of time released Ritalin in the morning and 10 mg at 3pm.

His special education teacher reports that Grey is at his best when involved with his peers, and that the most challenging part of his day is when he receives individual attention. He becomes flustered when he is called upon to answer a question in class, and dislikes being the center of attention. She describes Grey as a “model” student who has adapted well to the routine of school. Unfortunately, though, his anxiety resurfaces in new environments and when meeting new people.

Grey’s parents feel that he has been very fortunate to be involved in numerous extracurricular activities with other children. They attribute much of his social progress to his involvement in these activities. He attends an after school care program at his school for typically developing children sponsored by the local parks and recreation department. According to his mother, it has been a positive experience for Grey, who especially enjoys the field trips and swimming. Every summer he also attends a daily therapeutic recreation program at the local YMCA, where he plays basketball and swims.

Grey’s parents have high hopes and expectations for their son. They work hard to find ways to encourage and challenge him while being careful not to overwhelm him. They have learned to respect his reserved personality and are, understandably, proud of his interests and accomplishments.