Mrs. Rogers Fragile X Neighborhood

By Cindi Rogers

When my boys were young, I wondered day-to-day how I would survive. The behaviors, personal care, constant requirements and emotional toll were overwhelming! I knew I would need to be proactive in coming up with a strategy to save myself. How could I make simple things more manageable? I had heard that kids with fragile X syndrome need to know 3 things:

They need to know what they are doing?
How long will it last?
And what is next?

Subsequently, I also learned that they want to know WHEN they are finished. I developed a social story that would help them know these things. I would begin the story with known elements such as the morning routine and end the story with “home”. This was the best 15 minute trip
to the store ever! I did not
go to the store to get the
shopping doneAfter I finished, it became clear to me that I was helping to reduce anxiety about situations. I started by going through the story at home verbally. We took off in the car and I reiterated the steps. I also mentioned “we are already in the car…”, etc. Half way through the store, I went through it again, reiterating completed steps, “ok, we left home, we went in the car, we got in the cart, we’re getting our food, THEN we will pay, then we will be all done, we’ll get in the car, and then we will go home”. This was the best 15 minute trip to the store ever! I did not go to the store to get the shopping done–I went to do this experiment and dedicate time to making it successful.

When we got home, I laminated this social story so that it could be used again. I now have hundreds of social stories. My boys are now 20 and 22, and are very used to this method of communication between me, my husband and them. I’ve used some kind of visual support for everything, including training them for their current jobs, visiting places in their community (without us) and social situations.

Take a chance and start your own social story regime!