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Meet a Child with Fragile X

Jack, "The Mayor"

GEMSS would like to thank Jack and his mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!

“Jack is one of the happiest children I have ever met,” says his mother. He has a smile that can light up a room and an endless supply of hugs. He is never too busy to say hello to a friend or to tell a stranger to 'have a great day.' Being such a friendly little guy has earned him the nickname 'the mayor' at his elementary school. 

Jack loves tractors, trains, cows, and music of all types. “He is the only seven year old I know that enjoys listening to jazz while eating his after school snack or singing Tom Petty classics while getting dressed in the morning,”  quips his mother. He prefers British cartoons to American and has a whole repertoire of funny little voices and accents that he uses on a regular basis. It is difficult to be around Jack and not smile! In fact, when the family goes out into the community, it is not unusual for him to leave a trail of smiling strangers behind him. 

Ever since Jack was a tiny baby he has loved books. Snuggling and reading a favorite book has always been the one thing that makes him feel better when he is sad or anxious. It wasn't until he started talking at age four that his family realized that “he could read really, really well.”  They also found out that his anxiety is much more severe than they ever imagined. “Over the years he would spontaneously cry when we were outside. It was after he started talking that he was able to tell us that he was afraid of car horns,” his mother remarks. 

Jack has made huge gains since he was diagnosed with Fragile X Syndrome at sixteen months. “He has most of the symptoms typically found with Fragile X including: dyspraxia, sensory processing disorder, hypotonia, difficulty with communication and anxiety,” according to his mother.  But, with the help of incredible private therapists, dedicated and experienced school staff, and, most of all, lots of peer support he is able to overcome the challenges that the symptoms cause. His mother affirms, “We believe that Jack's progress is a direct result of the support he receives in a variety of environments.” 

The staff at his school communicates with his family and his private therapists on a daily basis to provide consistency. His classmates include him in school activities and social engagements outside of school.“They are a great group of kids who, despite being very young, are patient and supportive,” his mother says. Jack has a nine year old brother named Michael who reminds Jack on a daily basis that he is 'the best brother in the world.' Jack has inspired Michael to get to know other children with disabilities. With permission from Michael's school special education director, he now spends time everyday reading to children with disabilities. 

His mother feels that “Jack will face many more obstacles as he grows but I am confident that he will continue to conquer them as long as he has the support he needs.”

 

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