Guardianship for Special Needs Individuals and Caregivers — Webinar
Learn about if and when guardianship should be considered and the requirements needed, plus less restrictive alternatives, such as financial and healthcare powers of attorney.
After the Autism Diagnosis: What You Need to Know About Genetic Testing
We found two issues potentially hindering the convergence of an autism diagnosis with a known genetic cause. One is lack solidarity on whether or not to recommend genetic testing, and the second is whether or not the test will include the FMR1 gene (or any specific gene for that matter).
Were New Fragile X Genes Discovered?
A conversation with David L. Nelson, Ph.D., a Professor at Baylor College of Medicine and a member of the NFXF Scientific Advisory Council. He is a co-discoverer of the FMR1 gene and the repeat expansion mutation that causes fragile X syndrome. He is answering questions about a recent study published in the journal Molecular Psychiatry and an accompanying press release about the paper from Northwestern University’s Feinberg School of Medicine. The headline of the press release claims, "New Fragile X Genes Discovered."
Enjoying the Fall (including Halloween!) with Sensory Challenges
Halloween can offer challenges for children with Fragile X syndrome. Here we present activity ideas for you to consider, but the important point is to find what works for your family—and maybe it will lead to a new tradition.
Where is the Hope?
Getting a diagnosis is hard. It’s really hard. There has been nothing else like it in my life and I cannot imagine there ever will be. It made me sad … really sad.
Please Donʼt Poo Poo This Article
This is one more story about children who do not want to go poo … in the toilet. It is probably not for the faint of heart, though it does make you realize that you will do anything for your children.
11 Tips for When Your Young Adult Moves Out
Your child must learn to depend on someone other than you. It's an emotional time, but their independence is what you've been working toward all these years.
Adult Living Situations and Fragile X — Webinar
As your child gets older, there are many decisions to be made. One of the biggest decisions is determining the best living situation for your young adult.
You Are Never Too Old to Wear a Pink Tutu . . . and Other Lessons Our Son Has Taught Our Family
Like many of you, I will always remember the day and time when I received the diagnosis of our son, Ian. Fragile X syndrome – never heard of it. These are the lessons my family has learned since that time.
Ten Things to Do When Your Child Starts High School
You know your child best so you want to set up services that work for your child. This might look overwhelming, but if you take it one step at a time, you’ll do great!
Getting and Keeping a Job
It was late summer and Ian was 18 years old and he was getting ready to start the transition program at his high school, a program for students 18-21 years old after they graduate from high school. I had to figure out how to make this work.
Get to Know Your Local Firefighters
Getting to know your local firefighters can help you and your children with Fragile X syndrome in so many more ways than you think. Read about how to engage with them and how it will help your family.
Preparing for Your Child’s Individualized Education Program (IEP)
Going to an IEP meeting was always an emotional experience for me. After a couple of years of meetings with a group of people—teachers, psychologists, administrators—who had obviously already made many decisions regarding my son ... I decided to make some changes.