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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“Happy Birthday” Meltdowns and Other Behavioral Conundrums
“Why does my child cry when people sing ‘Happy Birthday’ to her?” Many years ago when I first heard this from a parent of a girl with FXS, I thought it was rather strange and perhaps something unique to this child’s behavioral repertoire.
Understanding the Fragile X Learning Style for Better Results
We often remind fellow interventionists and educators time and time again about the many unique aspects of Fragile X syndrome as well as the resources available online and in print.
How to Encourage Play — and Why Itʼs So Critical for Your Child
One of the common sites we encounter when visiting a child's home is a play area chock-full of every toy known to man, yet they won’t play with any of them. This exasperation is likely familiar to many of you.
Is Your Child’s Behavior a Manifestation of Their Disability?
Before school authorities consider suspension and possible expulsion, they need to determine whether threatening someone may have been the only way that the person with Fragile X syndrome could express the gravity of their personal discomfort.
Strategies for Day-to-Day Life
Mouse and Tracy present day-to-day strategies they've drawn from their evidenced-based practice and knowledge of the neurocognitive development of children with Fragile X syndrome.
Life: A Series of Transitions
I realized when my son Ian was just 4 years old that he had difficulty with transitions. I had never thought about transitions being difficult. You just did them - you didn’t think about it. Well, with Ian, I started thinking about them. I still do to this day. I quickly learned I had to allow plenty of time for everything, arrive early to events, set up schedules and routines, take time for transitioning back home—and that was just the beginning.
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.