Resources on Dentistry for Fragile X
Many families struggle with helping their loved ones with intellectual and developmental disabilities take care of their teeth. Routine care and regular exams can be a problem, especially when dental problems do occur. Finding dentists who specialize in treating people living with special needs or who are willing to learn and adapt to the individual’s needs can be difficult.
At our last Fragile X Clinical & Research Consortium meeting, many of the clinics shared they also find it challenging to find and refer quality dentists to their patients living with FXS. As a result, the NFXF team searched for helpful resources for both families and the clinics. We hope you find the following helpful!
External Resources
– A general overview with helpful tips.
– An international organization of dental professionals and other individuals who are dedicated to promoting dental health and wellbeing for people with special needs.
– Dental Help for Adults with Disabilities: Care and Considerations. Includes a “FIND A DENTIST” link.
– A network of volunteer dentists and labs that serve adults with special needs across the U.S.
NFXF Resource
Tip: Try contacting a local dental university, dental school, or medical center and asking if they have a program for people with intellectual and developmental disabilities.
learn more
Toilet Training the Older Child
Toilet training continues to be an important issue for families who have children with Fragile X syndrome. There is hope for older children, but they require a different approach to toilet training.
Prioritizing the Relationship with your Spouse while Raising a Special Needs Child
Raising a child with special needs is challenging enough for an individual. When you factor in a relationship, the challenges increase, and the consequences for not caring for yourself and your relationship are more significant.
Talking with Your “Typical” Children About a Sibling’s Fragile X Syndrome Diagnosis
When parents first learn about Fragile X, their primary focus is on the meaning of the diagnosis for their child with the syndrome. Once the dust settles though, they begin to think about the genetic implications for other family members, and in particular, for typically developing siblings who may or may not carry a Fragile X mutation.
Teaching Your Child to Ask for Something
One of the most challenging things for my son, Ian, to do is ask another person (not mom or dad) for something — like a favor or request — in an appropriate way. This became important when he started working at a “real” job: a grocery store. Whenever he wanted or needed to ask for certain things at work, he asked me to do the asking. Asking for himself, I realized, was a skill [...]
Get to Know Your Local Firefighters
Getting to know your local firefighters can help you and your children with Fragile X syndrome in so many more ways than you think. Read about how to engage with them and how it will help your family.
Behavior and Fragile X Syndrome
When discussing FXS and behavior, the focus should be on the whole person. Some behaviors may be a result of the condition, of which many are positive.
about
Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.
about
Robby Miller
Robby has spent over 50 years helping children with special needs, their families, and the professionals who work with them. Robby is particularly interested in how families learn about, access, and receive meaningful services from competent professionals, organizations, and institutions. This interest led to his co-founding the Fragile X Clinical & Research Consortium, also known as FXCRC. In his spare time, you’ll find Robby singing and playing rhythm guitar in a rock band with his pals.