A few years after my son, Jake, was diagnosed with fragile X syndrome, I couldn’t shake the feeling that I wanted to do something—anything!—to help my son and the fragile X community at large. But what? Researching possible treatments was out of the picture because I am not a scientist. Many other options were out, too, because I am not a doctor or therapist.
The first opportunity to help presented itself while Jake was receiving early intervention services at Easter Seals Delaware & Maryland’s Eastern Shore. There, I attended every one of Jake’s therapy sessions and asked how to further the therapists’ efforts by helping Jake at home. I also was granted permission to research fragile X on the Easter Seals’ computers and began holding informal support groups with the other moms. Eventually, a counselor at Easter Seals helped us work through our grief and fear. As a result of all my participation, the Easter Seals’ board of directors asked me to join!
What I never saw coming was being asked to speak in front of the Delaware General Assembly Joint Finance Committee in Dover. I was given the opportunity because of my knowledge of early intervention services at Easter Seals and how they were helping Jake. So, I got to tell our state’s legislators how important early intervention services are to our children and why funding is imperative to better the lives of our kids. For the first time, I felt like I was helping the cause in my own way, and it was a humbling and exciting experience.
With these experiences under my belt, I was ready to take on a little more. So, I asked some local parents of children who also live with fragile X to join me and some of my close friends at a handful of fundraisers I had organized: dances in the local church hall and motorcycle runs, all with silent auctions to help raise even more money.
And we raised a nice amount, too. The proceeds helped fund the scientific research that benefited everyone who lives with fragile X syndrome.
Finally, I felt the satisfaction of a job well done. It definitely aided in curbing that nagging feeling that I needed to do something to make life better for Jake. If you need to silence a nagging feeling, too, work always needs to be done somewhere. Your talents—no matter what they may be—can be put to good use in new and unique ways. Just stay connected. You never know where a connection may lead!
Sun contributor Jen Nardo is a longtime parent-mentor, autism advocate, and newsletter committee member as well as the parent of two sons, one with autism spectrum disorder (ASD).
This text was edited for consistency of language and message and appears in the January–March 2015 issue of the Autism Delaware™ quarterly newsletter, The Sun.