Updated: Apr 3, 2019
You will often see lists of facts about Fragile X Syndrome being circulated, detailing medicalised information focusing on the challenges that people with the condition may face. However, this doesn’t fully represent Fragile X. In this piece, we celebrate the fact that the challenges associated with living with Fragile X are balanced by, and lead to the development of, fantastic skills and attributes. Included below are our community's facts about Fragile X, illustrated by their quotes:
Our loved ones with Fragile X are:
Individuals first and foremost:
"The thing I would like people to realise about Fragile X kids - and indeed kids these days in general - is that they all have their own quirks, they all have their own personality and none of them are going to tick all of societies boxes or fit with their nice little labels."
"I think the thing I respect most about my son is his resourcefulness. Despite all of the struggles he faces, he is great at working around his limitations and getting things done anyway. If he can't find the words, he makes himself understood and is great at problem solving. A recent example his teacher gave was when the class were asked to write down months of the year in order. He was the only one who did it because he spotted the class birthday list and copied from there."
“Resourceful is the word! My daughter can seek a way to get over a problem. If she can’t spell a word on her iPad, then she asks Siri!”
"He has non-judgemental attitude to others which I so respect, it is such a rare quality now."
"My son is the most non-judgemental, helpful, music loving, young man. He wouldn't hurt a fly and he can't understand when people are nasty."
Sensitive to others:
“So caring about others and very finely tuned to their emotions. Very quick to notice if someone is off school and very pleased to see them if they've been off.”
Have a fantastic sense of humour:
“He loves tormenting the "Alexa" by asking it the same question repeatedly till it says something that makes him laugh.”
“An absolutely wicked sense of humour.”
Fantastic at tackling challenges:
“Although she worries a lot, it doesn't stop her doing things, she just faces her anxiety head on.”
“She worries about little things but will face the most demanding challenges head on.”
Finally, a little adjustment by others goes a long way.
"A little bit of common sense and a little bit of adjustment goes a long way, it really isn't that difficult."
“In many ways, Fragile X is other people's problem because if they disregarded it and she was given the opportunity, she could achieve great things!”
Thank you to all those who shared their experiences for this post! What are the facts that you would want to add about Fragile X? Leave them in the comments below!