Being a parent to a child with a disability, any disability, is like day after day of guiding your family’s boat through a constant storm. For parents of a child with Fragile X Syndrome, a leading cause of autism and intellectual disabilities, the storm may seem to rage on and on.
To help you get though the tough times we have provided a list of 12 must have Fragile X resources.
Fragile X on The Web
The National Fragile X Foundation
The National Fragile X Foundation is active in Public Policy and Legislative Advocacy for individuals with Fragile X. In addition they run a national Fragile X Conference that attracts thousand of people. NFXF also provides resources for treatment and intervention for the Fragile X Community.
FRAXA Research Foundation
FRAXA has provided over $21 million to help fund research for treatment and a cure of Fragile X syndrome. Get information on clinical trials, new treatments, Freagile X news and nationwide events at FRAXA.org.
The Fragile X Registry
Backed by the University of Wisconsin and the University of North Caolina, The Fragile X Registry’s is a database of people who want to be notified about fragile X research studies.In addition it provides information on research, news and treatment trials currently looking for children, adolescents and adults living with Fragile X.
Blogs about Fragile X
Learn from parents that have journeyed down the Fragile X path before you. Check out these blogs from parents raising a child with Childhood Apraxia of Speech and join the conversation.
Books about Fragile X
If you are looking for an offline way to learn about Fragile X there a number of great books for you to read. Here are a five books that will guide parents in working with their child.
Dear Megan: Letters on Life, Love and Fragile X
by Mary Beth Busby and Megan Massey
Mary Beth and Megan met when they both became active in the Fragile X Research Foundation (FRAXA). They wrote “Dear Megan” to offer hope and support to the millions of parents who care for and love their children with disabilities.
Written in the form of intimate letters between the two authors–who are separated in age by a generation–the book reveals the personal side of parents struggling with the challenges of school systems and health systems, marriage, and life to care for their disabled sons. It also shows the joy and love they find through these special children and adults.
Understanding Fragile X Syndrome: A Guide for Families and Professionals
by Isabel Fernandez Carvajal and David Aldridge
This handbook offers a straightforward introduction that clearly explains the condition on both a scientific and practical level. With sections on diagnosis, symptoms and treatment, as well as discussions of various emotional and behavioral considerations, the book covers all aspects Fragile X syndrome, its implications, and the possibilities open to families affected by it.
The book demonstrates how with the right therapies progress can be made and emphasizes how music can be used effectively to promote communication, interaction, fine motor skills and responsiveness in children with the condition.
Fragile X Fragile Hope: Finding Joy In Parenting A Child with Special Needs
by Elizabeth Griffin
Elizabeth Griffin’s son Zack has fragile X syndrome-the most common known cause of inherited mental impairment-and is among the 20 percent of people with fragile X who have autism. Whether you are a parent of a child with special needs or you struggle with unresolved grief, chronic stress, or depression, “Fragile X, Fragile Hope” shows without a doubt that you can survive, and more than survive, you can find your way back to a joy-filled life.
Fragile X on Social Media
Facebook: I Love Someone with Fragile X Syndrome
This page is all about people who love someone with Fragile X Syndrome! Parents and family members share thoughts, questions and suggestions for loving someone with Fragile X. Also, connect with research and non-profit organization updates.
Fragile X Boards on Pinterest
It’s all the rage in the social media circles, Check out these Fragile X boards that are full of pictures, inspirational quotes, ideas and more!
Robin Bennett has been a strong advocate of all individuals with disabilities since her own diagnosis
at age 12 of Friedreich’s Ataxia left her dependent on a wheelchair for the rest of her life. Graduated
in 2009 from Eastern Michigan University (EMU) with a Bachelor’s of Science in Creative Writing and
Theater, Robin is currently pursuing her Master’s of Public Administration at EMU. She has worked and
written for the Muscular Dystrophy Association, Ann Arbor Center for Independent Living and Integrated
Living Solutions.. Robin enjoys laughing with friends, being a mentor to adults with developmental
disabilities and proving that a book cannot be judged by its cover.
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