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Every day when you walk out the door with your child who has Fragile X syndrome (FXS), you are raising awareness of the condition. It happens in a variety of ways, and what is so interesting is that everyone takes away a little something different when they meet your child. Sure, your focus initially is on dealing with the diagnosis and the day-to-day issues that come at you in its wake, but as you begin to raise awareness, you soon see that FXS is much more than a diagnosis.

Awareness started the day you told someone, “My child has Fragile X syndrome.” Awareness continues as you tell your family, relatives, friends, and neighbors that your child has FXS. As each person forms a unique relationship with your child, you will begin to see the many facets and impacts of the condition.

Then raising awareness continues as you move around in the community and run into various people. Some of them will take notice of your child and ask you about him or her. It will most likely be in response to a behavior they have seen—it could be an outburst or arms flapping or your child’s speech. They may ask what kind of disability your child has and want to know more.

Some people may not say anything to you, but because of an interested look you notice in them, you might offer to tell them about your child. The first few times you talk about it, you might feel like you just don’t have enough time to really explain it well. Over time, you will most likely develop a short version and a long version of a description of FXS.

When meeting various professionals (teachers, doctors, and therapists), you may have to be more of an advocate and explain what FXS is and how it affects your child, and you may have to give them ideas on how to educate him or her. They may or may not do research into the condition, and you may end up educating others on the condition year after year after year. It gets tiring, but it never stops being so very important!

At schools, you may also decide to go in and talk to the students about Fragile X—it may be to the students in your child’s class or maybe as part of a biology lesson. This will help familiarize other students to your child and to FXS, and the more familiar they become, the less “different” your child will seem to them. Or at least your child’s difference will simply be appreciated as something individual and unique rather than strange.

Another great way to enhance this familiarity is to involve your child in suitable activities, maybe as a manager of a sports team or with a job in the school office. This helps not just your child, but the other students, too.

It was so important for my son Ian to be included for at least part of the day when he was in school—I always saw the other students as our future business professionals, doctors, and lawmakers. I wanted them to know a person with FXS and that people with FXS (and with all disabilities) are pretty cool, so when they are making business decisions and laws (especially ones that pertain to people with disabilities), they will always remember “that kid with Fragile X.”

Some people will learn about FXS based solely on experiences with your child; they may not care or be interested in the diagnosis. Over time they may learn about the diagnosis, but for you, having someone who wants to get to know your child is just as important as them learning the characteristics of the condition.

My son has worked at our local grocery store for many years. At the beginning, very few people who work at the store knew his diagnosis. A few times a year the store has a “Spirit Week,” where each day has a different focus. For example, there might be “Jersey Day” during which employees wear their favorite sports team jersey. They often have a tie day and a hat day and a Hawaiian shirt day. What people at the store know about Ian: He has the coolest clothes.

Once, one of the checkers asked me what Ian’s diagnosis is called. I told her, “Fragile X syndrome” and she said, “What does that mean? Are his bones fragile?” I replied, “No, it has to do with his X chromosome. It is a genetic condition that causes developmental delays in all areas. I actually carry a form of it, but I am not affected like he is.” Then she said, “Well I thought he had something like that—fragile something— but I didn’t know what it was.”

You will most likely see and hear a range of responses when it comes to raising awareness of FX. Some people will not care much, some will hear the words and move on with their lives, and some will hear the words and get to know your child and learn more about the condition.

Just remember that every relationship you build is an avenue to sharing about FXS. Have fun with it!

Jayne Dixon WeberJayne Dixon Weber has been a member of the NFXF team since 2007 and currently serves as the director of education and support services. She has two children—one, an adult son with Fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting with the development of the NFXF’s Adolescent and Adult Project, Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is also the co-leader of the Colorado Fragile X CSN chapter. Jayne likes to read, enjoys photography, and goes for a walk every day.
Feel free to share your stories with me at treatment@fragilex.org. I’d love to hear from you.