Fragile X - Fragile X Syndrome - Mental Retardation - Genetic Defects - Autism - Learning Disabilities

PUBLISHED FOR FRIENDS OF CONQUER FRAGILE X FOUNDATION

Summer 2006 Newsletter

FRAGILE X SYNDROME AND AIR TRAVEL
LETTER TO AIRPORT AND AIRLINE STAFF AND SCREENERS

To airline staff and airport security personnel:

This child, [CHILDS NAME], has a condition known as fragile X
syndrome. This is a genetic condition. Children with fragile X syndrome
can have difficulty learning and so, they may not understand all of your instructions. Additionally, they may be very anxious about meeting new people and have difficulty dealing with new situations. This anxiety may cause them to become upset as they deal with the noisy environment of the airport, the many people they encounter during air travel, and rules that they may not understand.

We ask that you rely on the child’s parent for advice on how to best interact with the child. We also ask that, if possible, you not subject the child to any situations that might be stressful for him or her. Remember, the child might not understand your instructions and might be frightened if singled out in some way or if unexpect

events occur. Just give the child some “space” and some time to
gather his or her composure. Above all, respect the parent’s wishes
and advice.

These are great kids. They are not trying to be stubborn or uncooperative. They’re just doing their best to deal with the anxiety and
fear that may arise during air travel. Please remain calm should a
problem arise and be understanding and gentle.

Thank you for your consideration.

Sincerely,
Leonard Abbeduto, Ph.D.
Professor, Department of Educational Psychology &
Associate Director for Behavioral Sciences, Waisman Center
Office: 608-263-1737

In February, CFXF advisory committee member Brenda Finucane and parent Cristy Hollin gave a presentation about fragile X syndrome to over 300 first year medical students at the Philadelphia College of Osteopathic Medicine. The students were very enthusiastic and eager to learn about the scientific and medical aspects of fragile X, as well as the impact on the family.
Matthew, Cristy’s 13 year old son with fragile X syndrome, was present to answer questions from the audience. Matthew showed great poise in front of the large crowd, calling on students when they asked questions and responding like a pro with the handheld microphone. Toward the end of the presentation, there was hushed silence when Matthew went to the podium and recited a speech and sang a song from his upcoming bar mitzvah. Many of the students had tears in their eyes as Matthew spoke, realizing the countless hours of practice and effort that had gone into that moment. The presentation had accomplished its purpose: many of those future doctors will always
remember what they learned about fragile X syndrome.

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