Understanding the cause of these associated difficulties, creating accommodations, participating in early intervention, and having appropriate support in classrooms and community programs help children with Fragile X to develop their actual potential.
With support, children with Fragile X can focus on developing their talents and abilities and show us who they are meant to be. Like everyone, those raising children with Fragile X Syndrome need support, encouragement and regular respite from the demands of parenting.
It is often helpful to provide educators, medical professionals, extended family and friends with specific information from national organizations and books that you find helpful in explaining the challenges your child faces and the strategies that work for accommodating those special needs. See the link to the NICHD Information Resource Center excellent booklet “Families and Fragile X Syndrome.”
Taking care of your needs as an adult, and as a parent under additional stress from the challenges of the associated disabilities, means that you will be able to support your child better over time.
Don't get caught up in being a perfect parent - that doesn't work for families of mainstream children and can be especially dangerous for families of children with special needs. Being 'just adequate' almost every day, forgiving ourselves, and giving ourselves room to improve inspires our children to keep trying when life is difficult.
Allow for moments of perfect satisfaction, happiness and contentment, and savor those. Sometimes they pass by so quickly we miss them completely, but they happen in every family, and we need them most in ours.
For more information on Fragile X Syndrome, see below:
Family Village Resources for Fragile X Syndrome
National Fragile X Foundation
1-800-688-8765 http://www.fragilex.org
FRAXA Research Foundation
978-462-1866
American Academy of Family Physicians
Diagnosis and Management of Fragile X Syndrome
NICHD Information Resource Center
Families and Fragile X Syndrome
Fragile X Information Center
Objective Information on Fragile X Syndrome for Parents and Professionals 800-370-2943
Fragile What?
Top Ten Things You Should Know About Fragile X Syndrome
Soothing Children's Fears
You can find books about raising children with Fragile X at your local libraries, neighborhood bookstores, early intervention centers and parent group libraries. If not, recommend these found at Amazon.com or those listed at national organization web pages:
Amazon.com - Books about Fragile X
Interesting Customer Reviews - The Invisible Cage
