What To Do Next

Your child has just been diagnosed with Fragile X syndrome (FXS). Where do you begin? We have listed 10 things here to help you get your bearings.

1. Contact us here at the National Fragile X Foundation

Call the National Fragile X Foundation (NFXF) at 800-688-8765 or send an email. Contacting us will help you realize that you are not alone, offering you great comfort at a critical time. It will help you relax into what is ahead of you.

2. Make an appointment to visit a Fragile X clinic

When you go to a Fragile X clinic, you will not hear, “Fragile what?” The Fragile X Clinics are staffed by experts who can answer your questions. It’s like getting a whole team on your side of the field after you feared you’d be alone.

3. Contact your local Community Support Network group

Community Support Network groups offer support, resources, and networking that can help you in a variety of ways:

  • They know healthcare and education professionals in your area.
  • They organize family activities and mini-conferences.
  • They are there to provide support in whatever way you need.
  • They are people who understand your journey.

4. Join Facebook and ask to join the Fragile X group

You can be as active as you want to be on Facebook. You can read what others have written, get ideas and resources, post questions for others to answer, and establish relationships that can become great sources of support to you—and perhaps last a lifetime. All with just some clicks of your keyboard.

5. Get early intervention

Most states offer early intervention services for infants, toddlers, and preschoolers, including evaluations for physical therapy, speech therapy, and occupational therapy. If your doctor doesn’t tell you how to get this started, call your local school (or school district) or state office that provides services for developmental disabilities. Studies show that early intervention is important; you begin to learn what to do to help your child learn and progress to the best of his or her ability.

6. Build a team of professionals to meet your child’s (and your) needs

This can begin with a developmental pediatrician, neurologist, geneticist, psychiatrist, and case worker, in addition to members of your early intervention team.

7. Talk to your case worker about resources

Talk to your case worker about insurance, Medicaid (waivers), and other resources in your community that offer programs and services for children with disabilities. This will help you help your child in very important ways.

8. Learn basic sign language

Learn basic sign language, especially for key words like toilet, food, drink, and more. Signing will help your child learn to better communicate, especially if he or she is non-verbal.

9. Attend the next NFXF International Fragile X Conference

When you go to an NFXF International Fragile X Conference you will learn the latest information about the condition and get connected to many people and resources that can help you on your Fragile X journey. While the conference can seem overwhelming at first, you will meet the most welcoming group of people you have ever met.

10. Read “Welcome to Holland”

When you have a child with a disability, it means your life will be a little different than what you were planning or expecting to happen. Not bad, just different. Read the poem “Welcome to Holland,” by Emily Perl Kingsley.

And, if you haven’t already seen it, also see Newly Diagnosed.