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.
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Dentistry for Individuals with Intellectual Disability
Many families struggle with helping their loved ones with intellectual and developmental disabilities maintain good oral hygiene. We've pulled together some helpful resources on dentistry for families and medical professionals.
7 Things You Didnʼt Learn About Fragile X in Biology Class
Fragile X is one of the more complicated conditions to explain, so we are sharing 7 basic facts about the biology and genetics of Fragile X
“Wat Up?” and Other Steps to Socialization
“Hey” was one of my son Ian’s first words, and what he quickly learned was that whomever he said that to responded — with something. Usually it was with a smile and friendly tone to their voice, and you know how quickly our children pick up on that positive feeling.
Stopping the Stuffing — Therapy Programs for You and Your Child
If you’re the parent of a child with Fragile X syndrome, you’re probably very familiar with mouth stuffing. Mouth stuffing for kids with FXS is usually an adaptive means of trying to succeed with eating.
Building Social Supports: A Guide for Parents
Limited social skills, social anxiety, and an often narrow range of interests contribute to the difficulties of making new friends.
Please Donʼt Poo Poo This Article
This is one more story about children who do not want to go poo … in the toilet. It is probably not for the faint of heart, though it does make you realize that you will do anything for your children.
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.