Diagnosed in 1994 with Fragile X Syndrome, Pat is non-verbal and cognitively delayed.

Our family journey started with shock and great sadness.  18 years ago, the only information available to us was from the library and it was not promising.

We contacted the National Fragile X Foundation and they connected us with families in our state for support.

A few years later, we started a parent support group for the western part of our state; the group has about 12 families and we have family gatherings once a year, with a goal of making it 2 times a year!

Pat started early intervention before we even had a diagnosis, then he was integrated into regular education until second grade – where it was overwhelming for him to be in a crowded class due to daily over-stimulation.  So, Pat was placed into a collaborative program with more specialized teachers/methods that helped him learn and succeed.

Pat has since been placed in a program for students with behavior problems because his last program exhausted all possibilities for him to be successful in learning a vocational trade and/or finding his talents.

Pat, although a loner most of the time, he is a very happy young man. His hobbies consist of playing YouTube videos of old Magic School bus and Jeopardy shows, and playing computer games. The order and structure he requires and loves in his life often limits him in many ways – but we are working on that.

Fragile X Syndrome is the most common known genetic (“single gene”) cause of autism, so we hope and encourage anyone that has a child with autism to get a blood test to rule out Fragile X. The implications through the generations of a family are many and the treatments can vary, but having a correct diagnosis can ultimately change the quality of life.

X