Top 10 Things To Do After Your Child Is Diagnosed with FXS

Your child has just been diagnosed with fragile X syndrome (FXS). Where do you begin?

  1. Contact us here at the National Fragile X Foundation
    Call the National Fragile X Foundation (NFXF) at (800) 688-8765 or email treatment@fragilex.org or visit the website: www.fragilex.org.
    When you’ve looked over the website home page, here’s a good place to go next: For the Newly Diagnosed. Calling the NFXF 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 (FX) clinic, you will not hear, “Fragile what?” The FX 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 LINKS parent support group
    LINKS groups offer support, resource, and networking that can help you in a variety of ways: They know health care and education professionals in your area; they organize family activities and mini-conferences; and 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, more,” etc: First 100 Signs.
    Signing will help your child learn to better communicate, especially if he or she is non-verbal.
  9. Go to the NFXF International Fragile X Conference
    When you go to a 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.

Helpful Words of Advice From Other Parents

The following is a summary of ideas/suggestions/encouragements from parents that were posted on Facebook in response to a question. Thank you, Fragile X community. You are the best!

  • Breathe. Keep in mind that your child has really not changed. Your child is still the exact same beautiful child he or she was yesterday. The only difference is that you have a name and a reason (diagnosis) for some of the ways that your child is, and some of the challenges he or she will face.
  • Take the time to grieve. It is O.K. (normal and even healthy) to grieve for the loss of what you expected your life to be like. You will still have a great life—it will just be a little different than what you expected. Resolve to write your story for yourself. It will help you heal. Know that grief may cycle back every now and then.
  • Educate yourself about Fragile X. Don’t let yourself get too overwhelmed with what you read. Try to learn a little something each day. Then you can help educate others when you are ready.
  • Get to know your child. Turn off your television, your computer, and your phone. Spend a little time each day seeing the world through your child’s eyes. You will learn so much from your child. Just play with your child and have fun. Laugh!
  • There will be times when you feel sorry for your child. Try not to dwell on it. FXS is all your child knows, and most people who have it are very happy people. Remember that—especially in the difficult times when your child may not be so happy!
  • Don’t worry about the future—focus on the present. When a child is first diagnosed, a parent’s first thoughts are often along the lines of: “Will he live independently? Drive a car? Will the other kids at school make fun of him?” Those things don’t matter right now, so don’t waste time worrying about them.
  • Every child with fragile X syndrome is different, so what works for one may not work for another. As much as possible, treat your child as if he or she can understand every word you say, because children get receptive language long before expressive language. Never give up on your child. All people—very much including those with FXS—continue to learn through their whole lives.
  • Remember to enjoy being a parent. It’s O.K. not to do “everything.” Being a parent of any child can be exhausting! Do what you can do, do what is good for your family, and be happy with that. Allow breaks from therapies too—it is O.K. You need to be a family. Make sure there is time for just plain old fun!
  • Make time for yourself. Find a sport/hobby/activity that you enjoy and stick to it. Your child will benefit when you are healthier and happier!
  • If you have a spouse, make time for him or her. Continue to build your relationship. Sure, you can be partners in advocating for your child, but you’re partners for each other, too. Don’t forget that.
  • Just love your child. You will find hope. You will find joy.