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.
We have just launched a new web tool - Fragile X syndrome resources, categorized by age group. The goal of the tool is to give parents, caregivers, educators, family members, etc. a one-stop-shop to find [...]
So, here we are, four feet of snow on the ground and we’ve run out of organic raisins! What do I do? Put on my Sorel boots and hike to the local [...]
Your son or daughter is moving out! Is it a parent’s dream? For many, yes, but… You have given your child your best of everything for his whole life. You have given [...]
Some families may not want their child to live in a home/facility that is offered by the local disability organization.
As your child grows into a young adult, you may consider independent or semi-independent living settings. There are a variety of living settings across the United States for people with developmental disabilities.
At the age of 18, children become legal adults, which means that you – as a parent – are no longer your child’s legal guardian, even if they have Fragile X. In order to continue helping your child take care of his or her self, make decisions in your child’s own best interests and handle their assets, you have to initiate a process of assuming legal guardianship of your child.
Learning to ride a public bus independently is a skill that many children with Fragile X syndrome (FXS) will be able to learn. Many of them have ridden a school bus and some of [...]
Patricia J. Heavren As long as I can remember, I’ve been on a journey to discover the extraordinary in the everyday world—especially extraordinary people, the home-grown “stars of life” with that elusive “X” factor. My [...]
Many people with Fragile X syndrome want to work when they get out of school. Whether paid or volunteer, it is important for them to be out in the community. There are employment opportunities for [...]