Words of Advice
The following is a summary of ideas/suggestions/encouragements from parents that were posted on Facebook. 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 OK (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 OK 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 OK. 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.