Workshops build awareness of Fragile X

Fragile X school workshops send a positive message that people with the condition can achieve if they are given the right support and opportunities.

Since 2015 Fragile X New Zealand has received three grants from the IHC Foundation to run its ‘No Longer Fragile’ workshops in schools. 

The workshops – usually held five or six times a year nationwide – are run in schools where there are children affected by Fragile X syndrome.  The workshops are delivered free and their aim is to build inclusive communities.

Fragile X Executive Director Andrea Lee says despite Fragile X being the leading inherited cause of intellectual disability internationally, and easily diagnosed by a blood test, the genetic condition is not well known in New Zealand.

Andrea says her 13-year-old son was diagnosed at the age of three. “It was life-changing for us because we suddenly had access to information that explained many things we had struggled to understand about Andre. And it made a big difference to know a little of how he might be experiencing the world, about his sensory sensitivities and high anxiety.”

She says the condition has been widely studied and a lot is known about the neurobiology of the condition. “We understand what is happening in the brain and the impact that has on learning.” This information is shared through one-hour workshops in pre-schools, primary schools and high schools. 

“Instead of everyone having to research every time a child with Fragile X comes along, we go out to them and we individualise the information to the child, working together with the whanau and school community.” 

The request for a workshop usually comes from the family and after preliminary discussions with the family an approach is then made to the school. The aim is to build a partnership between the family and the school. “Hopefully, it supports and deepens the relationship the family already has with the school.”

Andrea says it’s about letting people see the world through the eyes of someone with Fragile X and to say “these are the things that will help the child or young person to be successful in your community”. 

“One of our aims is to show people they are not dealing with children who are choosing to behave badly.” Andrea says if a child is highly anxious they are unable to process what is being said.  However if the child can be supported to self-regulate then they can learn.

“What we are trying to say to people is when a child or an adult is in that state, that is compromising how they function. We are keen to send a positive message that people with Fragile X are really capable people, given the right support and opportunities to learn and develop skills.”

There is a high demand for the ‘No Longer Fragile’ workshops, but they are limited by cost and by the availability of those who are trained to deliver them. Andrea says there are already four lined up for 2018 with people who were on waiting lists from last year. 

Her son, Andre, now in Year 7 at an inclusive mainstream school, has made big progress. “We have been able to share with the school how he learns – what we call the Fragile X learning style. For example, we know that he learns visually and simultaneously, not sequentially. It has changed the way he has been taught to read.” She says students like Andre learn better if they can see the whole picture, rather than the learning being broken down into parts.  We know that visual applications work very well for helping students to learn to spell for example and he is very motivated by the use of technology.