Highs and lows of fragile X

Yesterday was a real day of contrasts. From the highs of winning a race and speaking about fragile X, to the lows of not sharing it with my family, back up to the highs of having a photo shoot that worked perfectly for our son’s special needs.

The day started at the Festival of the Feet in Georges Hall. I entered the 14km and was pushed all the way by David Riches. At almost twice my age I hope I’m running as fast as he is in my 60s! I finished first in 51:21.

A friend and former colleague did a great job MC’ing the event. At one point she got all the kids to run forward if their parents had the smelliest running shoes. I’m pretty certain I would have won that prize if my kids had been there!

Sadly attending such events is close to impossible with our kids. We can just about do it with intense planning and backup from grandparents or a friend. But it is really stressful.

It’s certainly not the fault of the race organisers. If anything this was one of the most accessible events, with parking close by, speakers not too loud and ramps instead of steps.

But for Josiah, what are typical noise levels for most people can be like a war zone for him. The bombardment of sounds, light, people and sensory input just gets too much and he runs off banging his head in frustration.

What are typical noise levels for most people can be like a war zone for him

I had a few minutes on the stage to share about fragile X. I mentioned my son and that it was fragile X awareness month. I shared about my upcoming fundraiser at the city to surf when I’ll be running in a suit. (Link here if you want to get behind me!). It was a privilege to have a few moments to raise awareness among the runners and their families.

In the afternoon we were visited by a photographer and his wife who came to take photos of our family. We know them through the Fragile X Association and they were very understanding of Josiah’s fragile X symptoms.
They spent time making Josiah feel comfortable with them and came to our home so he would be relaxed. It really worked! We had photos with him and his sister, with our family of 4 and also with his grandparents. Josiah was so chilled out we even had time for some shots of just Helen and I!

Even though some experiences are challenging or close to impossible for us, fragile X has also enabled us to have some amazing experiences as a family. Just as some doors have shut, others have opened and we have met some amazing people through the association.

At the end of the afternoon, the kids happily played while the adults sat down at our kitchen table. All 6 could point to specific ways they had been impacted by the work of the Fragile X Association. Whether attending a seminar, meeting others who are affected or interacting with the handful of tireless staff in the office, everyone had a story to tell of how they had been touched by its work.

If you’d like to support the work of the Association or are inspired by my crazy running antics please consider giving $20, $50 or whatever you can to my fundraiser.