Fragile X Syndrome Resources by Age Group

///Fragile X Syndrome Resources by Age Group
Fragile X Syndrome Resources by Age Group 2018-10-03T14:59:45+00:00

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

NFXF Newly Diagnosed

Fragile X Disorders

Genetics & Inheritance

Genetic Counseling

Genetic Counseling and Family Support Consensus Document

Testing and Diagnosis

Reproductive Options

Premutation Carrier

Fragile X Doctors

Understanding a Fragile X Intermediate Result

FMR1 Gray Zone Allele: What Do We Know About It?

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.

Fragile X Gene’s Prevalence Suggests Broader Health Risk

FXTAS

FXTAS Consensus Document (PDF)

Fragile X-associated Tremor/Ataxia Syndrome: Who, What, When, How?

FXPOI

Consensus Document (PDF)

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

NIH: Family Health Portrait

American Academy of Pediatrics (AAP) Info

HC.org Tests and Screening During Pregnancy

HC.org Prenatal Genetic Counseling

HC.org Finding a Pediatrician

AAP Genetics in Primary Care Institute

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

HC.org Chronic Conditions and School

HC.org Special Education Services and Federal Laws

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

Wrightslaw

Yellow pages for kids with disabilities

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

NFXF 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)

Sensory Integration Issues In Fragile X Syndrome (2014-May)

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

Wrightslaw

Yellow pages for kids with Disabilities

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

Ten Things to do When your Child Starts High School

Adolescent & Adult Project

Planning for College

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)

Sensory Integration Issues In Fragile X Syndrome (2014-May)

Other

Got Transition

Best Buddies

Special Olympics

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.

Toilet Training the Older Child

Employment & Daily Activities

Getting and Keeping a Job

Adolescent & Adult Project

Planning for College

Community Living

Other

Got Transition

Best Buddies

Special Olympics

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!

Toilet Training the Older Child

Employment & Daily Activities

Getting and Keeping a Job

Adolescent & Adult Project

Planning for College

Community Living

Other

Got Transition

Best Buddies

Special Olympics

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.