Prior to contacting The Fragile X Society, Grace didn’t know what to expect from her daughter's diagnosis, or how to help her.
“We were referred to a consultant after it became apparent that my daughter, Rosie, had difficulties with her learning. It was then that we found out she had Fragile X”.
Like many of the parents we work with, Grace struggled to get the practical information and support she needed from the geneticists, paediatricians, and other medical professionals present at the time of diagnosis.
“We didn’t know why Rosie was behaving the way she was. It became apparent that things were happening which made her anxious and stressed. I went to my GP for help when her behaviour was particularly bad, and was simply told to get a book out of the library”.
After finding our website through an internet search, Grace was able to access information and resources which she feels have been important in understanding her daughter’s behaviour. Grace has been regularly in touch with our Families and Professionals Advisor (Children), who has provided ideas and information – such as using a bespoke chart system – to create more of a structure, which make Rosie’s anxiety less likely, therefore reducing the likelihood of challenging behaviours.
More recently, Rosie has been participating in a behavioural logging research study with Belfast University – an opportunity highlighted by our Families and Professionals Advisor. This study looks at the behaviour of children with fragile X, and aims to develop more succinct coping strategies, improving the child’s health and well-being.
“I would advise anyone in my situation to gather as much information as you can, and to seek advice from The Fragile X Society because they can give support and strategies to help you and your child. It is a constant learning curve, but I know now there is always someone there to support me”.