Talking to Family
The diagnosis of Fragile X can have emotional and genetic implications for immediate and extended family members. Whether you are sharing a new diagnosis of Fragile X syndrome or informing family members of positive carrier testing results, the information can be met with a wide range of responses.
Responses may range from support and understanding, to denial, disbelief, shame, and even indifference; all are common. Each person handles this information differently — there is no right or wrong way, but some of these feelings can take some time to work through.
Sometimes when family members learn they may be a carrier for Fragile X they feel frightened or overwhelmed by the concern of having a child with Fragile X syndrome, or they may be distraught about passing on the gene that caused their child or grandchild to have Fragile X syndrome. They also may be concerned about FXPOI or FXTAS.
It can be difficult to inform relatives about their genetic risk but know that it is not your responsibility to provide genetic counseling or ensure that your family members seek testing.
On the other hand, you may find you receive support and compassion from family members, including those who you may not have been close to before this diagnosis. Sometimes these events can bring people together in their quest for treatment, information, and hope.
There may be many people whom you will want to tell about Fragile X — your doctor, your friends, young students at your child’s school, and you will want to be able to describe it in a way they will each understand.
These conversations will most likely be very similar to what you tell your family, only without the complex emotions attached.
Whether it’s your child’s doctor or your own, you might start with how FXS affects your child and then direct the doctor to our website for more information. Depending on the current issues your child is facing, you may want to also bring information on Fragile X syndrome and give it to the doctor.
to Others at School
If you are going to talk to young children about Fragile X, keep it short and simple. If you’re not sure at what level to talk, ask one of your friends or neighbors who have a child in the same class. If you know a “typical” child your child’s age, ask them what they would like to know about FXS. If this is the first introduction for your child to new classmates, bring a favorite toy of your child’s so the other children see that your child is interested in the same things as they are.
You might consider sending a letter to the parents of the children in your child’s class. Not only will it educate them, but you can give them ideas on how and what to talk about with their own children. As the children get older, gear your talk to what you think they’re ready for; you will get a good idea of this by the questions they ask.
You’ll want to keep this simple unless they ask you questions. Know that if you do not feel like talking, you can give them something written. We’ve created a card to hand out in such situations. (Also see our welcome packet below.) It’s very simple, business-card size, and it directs them to our website for more information. You might also want to use this card in other situations too because of the website reference (teachers, medical professionals, therapists, etc.).