Having two boys with Shwachman-Diamond Syndrome and secondary mitochondrial disease,, we have had to help the children cope with many medical procedures. We still continue to do weekly infusions of IgG (immunoglobulins) here at home, which has always been stressful for my youngest son. Several years ago, a friend told me to try using social stories as a means to help my youngest with his fear of getting blood in his lines while we infuse his weekly medication. Since then, we have used social stories in a variety of ways.
Our youngest so, Joseph, has always had more fears and anxiety about medical procedures than our middle son. He has a need to know exactly how things are supposed to be, how the procedure will "play out". If they do not go as planned, it can cause a meltdown situation. If he witnesses someone else having problems with their medical procedures, this causes him a great amount of angst, as well. He has stayed up late many a night worried about anything from getting blood in a line to worrying about his veins not being good enough to start an IV the next day.
What is a social story? Social stories were originally introduced in the early nineties to support the emotional and social development of autistic children. They were developed to help identify a concern and support a desired outcome in social interactions for autistic children. These stories are written about the child himself, thus making it unique to that child.
We modified the application of social stories to fit Joseph's unique fears. They worked like a charm! For instance, we were able to extinguish his fear of getting blood in his line through the use of a social story. The strange oart of his fear was that he had developed the fear not because he had gotten blood in his line, but because he had witnessed it happen to his brother. He obsessed about this happening to him constantly-even when it wasn't IgG infusion day. We developed a social story that went something like this:
"Joseph, have you ever gotten blood in your line before? No? Well. since you have not gotten blood in your line and you have better sites for your subcutaneous injections, the chances are that you will not get blood in your line. But, if you should, what would we do? We would remove the needle and catheter. We would then make sure we could insert another needle into a spot where you already have numbing cream. We would change out the needle sets and re-insert a new one. Then we would infuse your IgG and everything would be okay."
We repeated the story over and over again, and each time it brought him comfort knowing that the problem could be solved. He felt reassured knowing that he would not have to have a needle poke him where he was not numbed first with his numbing cream. If he thought of a new problem that might arise, we figured out the solution and added it to the social story.
We had a battle with him having to get IVs placed. He would panic, scream, run to hide-one time running past the nurses station on the floor, through the locked doors and all the way to the elevator before I caught up with him. He has difficult veins, no doubt about that.. His fears have been reinforced because it can take up to eleven pokes to get a line in. He's had to be infused through a vein in his foot while he sat for over 6 hours, unable to get up. He's had medical procedures done where they were unsuccessful at getting a line started--even in the OR by experts, while he was asleep! So, he has good reason to be afraid. We could not allow the fear to consume him, though.
Social stories have helped him cope with IV placement ad he continues to have many medical procedures in his life. When he begins to worry about the upcoming blood draw or IV placement, we talk him through itfrom his perspective. A good way to come up with the social story is to allow your child to write the social story from questions you ask as prompts.
Joseph's IV social story goes something like this when he begins to worry:
"Joseph, what can we do to help your veins be ready for tomorow?" He usually answers, "Drink lots of fluids." I reply, "Yes, what do fluids do?" He replies, "They make my veins big and fat so that they are easier to poke!" We then go through the rest of the story with solutions. I remind him that Child Life will come to play with him, that we will not allow them to keep poking, that he ca get the nurses to ask permission to use the mask so that they can place the IV while he is asleep (Note: the gas can cause some children more discomfort upon awakening-this may not be an option for all children) and that he does not have to be afraid. I remind him that I will be there the entire time, he will not be alone.
Since we have been using social stories, I can see how they have helped him to make social stories on his own. He starts to worry and then tells me, Well, mom, if this happens, then I can do this, or this will happen." He has learned to cope! Through using social stories with him, he has found an active coping strategy that he can now employ himself. This is a gift beyond measure, especially knowing that he will continue to face many medical procedures throughout his life.