A reader asks (and we answer): I heard it can be challenging for individuals with Fragile X to meet new people and be in new situations. Do you have any tips on making the children feel comfortable?
Traveling with your young or adult child with Fragile X syndrome on an airplane can be very stressful for both of you. These tips are provided by parents based on their experiences with their own children. Find what works for you, your child, and your family.
As the option to do telehealth visits opened up over the past six months, we have gathered information to help you make the most of your online visit for your child with Fragile X syndrome, whether they are a young child or an adult.
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.
Dr. Marcia Braden provides tips and resources, including social story and visual schedule templates, to help you and your children during the COVID-19 pandemic.
The NFXF's Clinical Trials Committee provides family-friendly recommendations on the use of Cogmed intervention for memory and attention in Fragile X syndrome.
A research team from the UC Davis MIND Institute recently published findings from a study using a computer program called Cogmed to train memory, flexible thinking, and attention in children and adolescents with Fragile X Syndrome. Referred to as ‘executive function’ - memory, flexible thinking, controlling impulses, and attention are problems characteristic of individuals with Fragile X Syndrome. The computer program was employed with 100 children and adolescents with Fragile X Syndrome – presenting them with challenging visual and auditory tasks involving memory and attention and challenging them to think flexibly in order to complete those tasks.
Most children who come to see me have a combination of developmental delays, communication challenges and symptoms of anxiety, resulting in frequent tantrums. It is common for parents to share details about their daily struggles.
Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.
Halloween can offer challenges for children with Fragile X syndrome. Here we present activity ideas for you to consider, but the important point is to find what works for your family—and maybe it will lead to a new tradition.
This discussion provides clinical perspectives on the behavioral differences between FXS and what are thought to be core features of autism. There is still much to be learned about identifying behaviors that suggest the presence or absence of ASD in FXS.
I have found these 10 time-out “rules” to be the keys to success. They are based on the fundamental principles and incorporate adaptations for children with Fragile X syndrome by accommodating repetition, consistency, and predictability.
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.