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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Doggone It … Mantras Are Great for Learning!
Mantras, like positive affirmations, really do have power. Mantras are short, positive, instructive statements full of action words. We use them to quiet the mind and focus on thinking and action.
A Holistic Approach to Toilet Training
The challenges of toilet training can be magnified for families of children with Fragile X syndrome. It's not simply that toilet training is delayed, it often requires specific behavioral techniques that address their physical and behavioral phenotypes.
Verbal Perseveration! Verbal Perseveration!
Let's discuss verbal perseveration (VP), a very typical and pervasive aspect of language in Fragile X syndrome. Does VP interfere with daily living and activities? You bet your boots it can!
Video Modeling
Therapy is a fun, creative process – one of the reasons that we have been at this for so long! One of the challenges of being a therapist is staying on top of the ever-emerging intervention techniques that come into our practice and making them work for individuals with FXS.
You Are Never Too Old to Wear a Pink Tutu . . . and Other Lessons Our Son Has Taught Our Family
Like many of you, I will always remember the day and time when I received the diagnosis of our son, Ian. Fragile X syndrome – never heard of it. These are the lessons my family has learned since that time.
Common Feeding Difficulties and How to Make Mealtime More Successful for Your Fragile X Family
Kristin Burgess Watson highlights some common feeding difficulties ranging from over-stuffing to picky eating that individuals with Fragile X struggle with and suggests some strategies to make mealtime more successful for your family.
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.