Wednesday, March 23, 2011

The Importance of Social Stories

When my boys were young, I wondered day-to-day how I would survive.  The behaviors, personal care, constant patience required and emotional toll were overwhelming!  I knew I would need to be proactive in coming up with a strategy to save myself.  Some of the daily challenges were simple things like bathing, going to the grocery store or visiting Grandma and Grandpa.  How could I made these simple things more manageable?

I had heard about the fact that kids with Fragile X Syndrome need 3 things:  They want 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.  How could I incorporate this methodology into their everyday lives?  I had also heard about Social Stories from our therapists (experts in the field of Fragile X).  Social stories tell the viewer in pictures what's going to happen, what they'll be doing or where they will be, and what's next. 

From an early age my boys were familiar with a few pictures from a software program called Boardmaker. I decided that I needed to begin creating a visual social story, so I purchased Boardmaker and got busy.  I needed to start the first social story with something that did not require any demands on the boys' part in order to minimize anxiety.  A trip to the grocery store would be perfect.  I would begin by showing a picture of home (something safe), then move to the picture of the car (they liked riding in the car so this was not threatening), then show a live picture of the grocery store (obtained from the internet).  I would then use a picture of a grocery cart, then food, then pay, then finish with a picture of home.  I realized that doing this first one was also an exercise in building trust.  I wanted the boys to trust this scenario to be "true" and be accurate.  I also wanted the whole experience to be semi-quick and successful.  This left open the door for future visits to grow and be possible.  Here is a picture of what that social story might look like.

As you can see, I started with a pictue of home so that that was a "known" element.  I also ended with home because that was safe and predictable.  After I finished, it became clear to me that what I was doing was reducing anxiety about this situation.  So, my approach when we went through this social story verbally (before we left for the store) was to use the very same words everytime I went through it.  We took off in the car and I reiterated the steps we would go through.  I also mentioned "we are already in the car.....", etc.  Half way through the store, I went through it again, just saying, "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 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 it.  It was a successful trip.  When we got home, I laminated this social story so that it could be used again and again.  Whenever I use it, I use the exact same words in exactly the same order so that it's predictable and non-anxiety-inducing.

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.  Later on in their lives, I realized the power of this kind of method and I developed another method.  This one is call "All Done", and it is specifically used when there is involvement from them necessary.  I've used that one to teach them everything from how to unload the dishwasher to how to work at their jobs.  I plan to update this blog to explain that method in the near future, so keep watch!!! 

Take a chance and start your own social story regime.  Let me know how it goes for you!

To learn more about Cindi Rogers, her sons and her book: Please click "Becoming Mrs. Rogers-Learning to Live the Fragile X Way"

Wednesday, March 2, 2011

All the Talk About Food

Since our boys were very young, we raised them the only way we knew how.  Constantly telling them, "No", "Don't do that", etc.  It only seemed natural to continue to tell them what they could not do.  Everyone in their life was constantly telling them what they could not do.  I can only imagine how frustrating that must have been.  As we received our diagnosis of Fragile X Syndrome, and as they got older and it became clear that they wanted some control, so we tried to switch our way of thinking

A big change in all of our lives came when we decided to switch to telling them what they COULD do!  One daily point of frustration was FOOD!  We continuously monitored what they ate, how they ate, what time they ate.  We thought about locking the refrigerator so that only we had access.  We had already stored many of the snack reserves in a locked room.  We could see that this was no way to encourage independence.  We asked ourselves, "How could we manage what they eat and still give them some control?"  After much thought, and some intense consultation with the experts (more on them to come), we came up with an idea.  We would need to be consistent with this idea, and most of all, patient.  We might have to tweek it a bit, depending on the boys' response. 

The boys had already been using picture symbols derived from a software program called Boardmaker, so we had a communcation method in place.  We decided to tap into that and develop a space.  There would be a space in the refrigerator (we designated 2 shelves in the door of the refrigerator), and a place in a cabinet where each of their pictures showed their "special place".  Each morning we would "set up" all of the snacks (in the cabinet), or cold items (drinks, yogurt, etc.) that they were allowed to choose from for the entire day. 

We practiced for weeks telling them that "this is your special spot for Jake's snacks", or "these are your choices".  When they were gone, there was nothing until the meal.  There were tears, stomping, a bit of hitting, and overall displeasure, at first.  We stood firm.  We continued to repeat the same phrases.  We switched out types of snacks to gauge satisfaction.  Some included apples, dried fruits, gummie bears, Gold fish, chips, dried cereal, crackers and others.  We made sure that each day there was one of their favorite things to continue to motivate and keep it interesting.  Amazingly, they always went to their spots!  There was less distraction and pillaging through.  In the first week, they usually ate the majority of items very quickly.  After a while, they learned self-control, and self-regulation.  This took months.

This is just one example of how giving back control of something can affect overall behavior and environment.  With proper supports in place, and a sense of patience unseen in our history, we prevailed!  We have been able to assign the task of "setting up" for the day to someone else.  This is a big dose of satisfaction for us since our overall goal is for our boys "to be as happy and as independent as they can possibly be".