Fragile X Syndrome Resources by Age Group
Maybe you or a family member found out they are a Fragile X carrier and are trying to get pregnant, or you might be pregnant and have found out that your baby may have Fragile X syndrome. Whatever the case, we know you have a lot of questions, worries, anxieties, etc. Whether you are hearing this for the first time or you have a family history, here is the information for you.
Also, if you are pregnant and just found out you either are a premutation carrier or have the full mutation, please email the NFXF at treatment@fragilex.org and we will get you connected with a genetic counselor right away.
Fragile X Info
Genetic Counseling and Family Support Consensus Document
Premutation Carrier
Advances in Understanding Premutation Involvement in Women & Advice to Stay Healthy – Be sure to look through Footnote #6 – by Polussa – and open the Figures and the Table that are embedded in the article.
FXTAS
FXTAS Consensus Document (PDF)
Fragile X-associated Tremor/Ataxia Syndrome: Who, What, When, How?
FXPOI
Support
The NFXF Community Support Network brings families together for support, education, and fun.
Other
Centers for Disease Control: Fragile X Syndrome
National Institutes of Health (NIH): Fragile X Syndrome
NIH/genome.gov: Learning about Fragile X Syndrome
Genetic Alliance: Making Sense of Your Genes: A Guide to Genetic Counseling
American Academy of Pediatrics (AAP) Info
HC.org Tests and Screening During Pregnancy
HC.org Prenatal Genetic Counseling
HC.org Finding a Pediatrician
When your child is between the ages birth to three years of age, you will be introduced to a variety of new terms and new services, and the importance of early intervention and treatment is emphasized. This is daunting, so the resources here help you to understand what comes next and how to best help your child.
The NFXF is here to help you navigate this new experience. You can reach out to treatment@fragilex.org or join our community. Depending on your state, the services may change when your child turns three, so we have included information to not only help you now, but to also help you prepare for the changes that happens when your child turns three.
American Academy of Pediatrics Info
HC.org Individualized Education Program
HC.org Learning disabilities
HC.org Your right to special services
Other
The Individual Family Service Plan (IFSP) Process – This is typically used from birth to 3 years old.
ARC – For people with intellectual and developmental disabilities. They have chapters throughout the country to help parents, especially with issues specific to each state/community.
Center for Parent Information and Resources (formerly NICHY)
The Early Childhood Technical Assistance Center (ECTA) – Part C
Your child is either transitioning to school or in school – either way, there are now a wealth of resources and programs to help you and your child, but they vary by state, can be bureaucratic and the information can be overwhelming.
Educational Resources
Consensus Documents
These documents help you and your doctor understand the general scientific and practitioner consensus around different topics related to treating Fragile X. They can be helpful for you and can also be passed along to your doctor or therapists.
Autism Spectrum Disorder in Fragile X Syndrome (2014-Nov)
Assessment in Fragile X Syndrome (2012-Oct)
Behavioral Problems in Fragile X Syndrome (2012-Oct)
Educational Guidelines for Fragile X Syndrome General (2013-Sept)
Educational Guidelines for Fragile X Syndrome Preschool Elem (2012-Oct)
Hyperarousal in Fragile X Syndrome (2012-Oct)
Medications for Individuals with Fragile X Syndrome (2012-Oct)
Physical Problems in FXS (2012-Oct)
Seizures in Fragile X Syndrome (2012-Oct)
Sleep in Children with Fragile X Syndrome (2012-Oct)
Toileting Issues in Fragile X Syndrome (2012-Oct)
Use of Complementary and Alternative Therapies in the Treatment of Fragile X Syndrome (2012-Oct)
American Academy of Pediatrics Info
HC.org Individualized Education Program
HC.org Learning disabilities
HC.org Your right to special services
HC.org Chronic Conditions and School
HC.org Special Education Services and Federal Laws
HC.org Individualized Education Program (IEP)
Other
The Individual Family Service Plan (IFSP) Process is for children who have not entered school
ARC – For people with intellectual and developmental disabilities. They have chapters throughout the country to help parents, especially with issues specific to each state/community.
Center for Parent Information and Resources (formerly NICHY)
The Early Childhood Technical Assistance Center (ECTA) – Part C
When your child enters high school, it is time to start thinking about what experiences you want for your child in high school, as well as what you are looking towards when your child leaves school. It can be a little perplexing at times, but reach out to other families for guidance and assurance, because it can also be an exciting time. You will also want to start looking at the transition program that your school offers for the 18-21 years.
Toilet Training the Older Child
Consensus Documents
These documents help you and your doctor understand the general scientific and practitioner consensus around different topics related to treating Fragile X. They can be helpful for you and can also be passed along to your doctor or therapists.
Autism Spectrum Disorder in Fragile X Syndrome (2014-Nov)
Behavioral Problems in Fragile X Syndrome (2012-Oct)
Educational Guidelines for Fragile X Syndrome General (2013-Sept)
Educational Guidelines for Fragile X Syndrome MS HS (2013-Sept)
Hyperarousal in Fragile X Syndrome (2012-Oct)
Medications for Individuals with Fragile X Syndrome (2012-Oct)
Physical Problems in FXS (2012-Oct)
Seizures in Fragile X Syndrome (2012-Oct)
Sleep in Children with Fragile X Syndrome (2012-Oct)
Use of Complementary and Alternative Therapies in the Treatment of Fragile X Syndrome (2012-Oct)
Other
Guardianship, power of attorney, Medicaid and SSI are all important issues that are beyond the scope of this resource. Guardianship and power of attorney, especially, vary drastically by state and other jurisdictions, so it is important to seek local legal counsel. Your local ARC can be a useful resource for these important topics.
These are the transition years for many. Some will stay in their high school and others will go to a new site and still others may go onto college. Every state has their own transition guidelines and you will find those very helpful. While most will leave the school system at age 21 or 22, again, states vary on this age and the types of services they offer. Use these transition years to get your child set up for post high school as best you can.
Other
Guardianship, power of attorney, Medicaid and SSI are all important issues that are beyond the scope of this resource. Guardianship and power of attorney, especially, vary drastically by state and other jurisdictions, so it is important to seek local legal counsel. Your local ARC can be a useful resource for these important topics.
Once your child is out of the school system there is no IDEA that guarantees services for your child. Often there is a wait list for services and the wait list can be years. Every state is different and you may even see differences between counties within the same state!
It is important to realize that it could be up to you to set up your young adult’s day – 24 hours a day, seven days a week. You will have to find the job, the day program, and the afternoon activity. There may or may not be services to help with this. Get connected with your local CSN, if you are not already. Reach out to other parents of young adults in your community. Our best recommendation – keep your young adult engaged in the community as much as possible and keep them active. Your young adult will continue to learn and grow, and you will have fun watching them grow into an adult!
Other
When A Child Turns 22 – Advice for families and caregivers
Guardianship, power of attorney, Medicaid and SSI are all important issues that are beyond the scope of this resource. Guardianship and power of attorney, especially, vary drastically by state and other jurisdictions, so it is important to seek local legal counsel. Your local ARC can be a useful resource for these important topics.
This tool was developed via a subcontract from American Academy of Pediatrics through the Cooperative Agreement Number 5NU38OT000167-04, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the American Academy of Pediatrics , the Centers for Disease Control and Prevention or the Department of Health and Human Services.
