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Ever met a child with Fragile X Syndrome?
Most people have not. Fragile X syndrome occurs in approximately 1 in 4,000
males and is the leading known inherited cause of mental retardation.
However, it is still a low-incidence disorder, which means that teachers
and other professionals may encounter only a few individuals affected by FXS
during their career. Some parents of children with FXS have never seen another
child with FXS.
There is great variability in FXS.
All children with FXS do not have exactly the same features and characteristics, nor do they all experience the same degree of impairment. Therefore, two children who have FXS may be very different from each other. In fact, even siblings can be affected quite differently by FXS.
We compiled the following "portraits" of children to illustrate some of the common issues, behaviors, and features in young boys with FXS. The portraits do not predict actual individual children, but rather incorporate data from our longitudinal research on over 75 boys from 9 months to 12 years of age.
"Carlos"
Age: 25 months
Stage: Toddler
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"Jamie"
Age: 4 years
Grade: Preschool
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Favorites: Barney, swinging, and bath time
Avoids: Having his teeth brushed, playing in sand, new people
Current challenge: Communicating his needs
Parent challenge: Adjusting to news of FXS diagnosis and finding services to support Carlos’ development
To read more about a toddler with
FXS click here! |
Likely to be seen: Jumping on a trampoline, washing markers off of his hands, doing his best imitation of Cookie Monster
Personal Motto: "Let’s do it my way!"
Parent Challenge: Finding a childcare setting to meet Jamie’s needs
To read more about a 4 year old with FXS click here!
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"Kevin"
Age: 5 years
Grade: kindergarten
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"Grey"
Age: 8 years
Grade: 3rd
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Favorites: Wheel of Fortune, goldfish crackers
Never Seen in Public Without: Light-up shoes, a rubber band
Never Turns Down: A chance to flush the toilet
Personal Motto: "If it is not on my schedule, Forget it!"
Learning Style: Pictures, demonstration
Current Challenges: Adjusting to kindergarten, Learning to communicate with pictures
To read more about a 5 year old
with FXS click here!
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Career Goal: Professional athlete
Most Prized Possession: Autographed baseball
Learning Style: Hands On
FAQ's: "Wanna play ball?", "Time for practice?", and "My turn yet?"
Parent Challenge: How to include Grey in more activities with typically developing children
To read more about an 8 year old with FXS click here!
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"Anthony"
Age: 11 years
Grade: 5th
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Favorites: Swimming, bikes, pizza, and "Lauren", a classmate
Known For: Hilarious impersonations of TV characters, concern for friends, helpfulness
Most Helpful Classroom Modification: Using keyboard to type stories and spelling words
Current challenge: Preparing for the transition to middle school
To read more about an eleven year old
with FXS click here! |
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