Sassy Boots and Jewelry

Jazz has frequently struggled with perseveration.  Perseveration is when a person has a repetitive and at times obsessive thought run through their mind and becomes a constant topic in conversation.  This has included dream houses, islands, and jewelry for Jazz.  It is exhausting for us because the topic that she is currently perseverating on, and there is always at least one, becomes the only thing she can think about or talk about.  These perseverations can last days, months, and in the case of jewelry: years.  We had no idea how to get her to let a topic go until recently.

An occupational therapist that I have come to admire for her contributions to the field is Winnie Dunn and it was her most recent contribution that helped us learn how to work through Jazz's perseverations.  Dr. Dunn has been doing research and developing a new way of evaluating and treating patients using a strengths based approach.  The primary principles of a strengths based approach include acceptance of all aspects of a person’s disability including the not so desirable aspects.  It is not simply being a “Polly-Anna” and only seeing the positive while denying the negative.  It is more than that.  It is basically stating up front, we know this person has a disability, now how do we make all aspects of this person’s disability work with us?  The example that was used in one of Dr Dunn’s presentations was in regards to a child with autism experiencing perseverations about dinosaurs.  A traditional disability focused approach would say that we need to discourage this “obsession” through a behavior modification program with rewards for choosing activities that do not have to do with dinosaurs.  The original strength approaches from the past would say, this child shows a strong level of focus, but let’s ignore the autism part and the dinosaurs.  In this new strengths based approach the dinosaurs are used as an incentive to engage the child in all parts of life.  The math assignments would be in terms of how many dinosaurs were at the watering hole versus the tree grove.  The idea is that by acknowledging all aspects of what makes the person who they are, you will make more gains in treatment and the various care givers have less stress from constantly battling the “abnormal” aspects of the person.

This approach and new way of thinking has been monumental in developing a better understanding of Jazz and how to work with her brain instead of always against it, particularly when it came to her perseverations.  For those of you who have met Jazz you know that she has a style of her own that oozes in every aspect of her clothing, hair styles, bedroom décor, and even the adjectives she uses to describe things.  And for those of you who have met or seen Dr. Dunn, you know that she too has a style all of her own, that is remarkably similar to Jazz’s.  Hence after sharing this story one year later at one of her workshops for this approach, she was appalled at the injustice that was done to Jazz in the name of cognitive rehabilitation for her perseverations.

Dr Dunn's Style

Jazz's Style

Jazz had been banned from wearing jewelry and “sassy” styled shoes to school because she reportedly carried an attitude with her around the other children.  For Jazz this was heart breaking because not only is fashion a huge area of interest for Jazz but it is also a developmentally appropriate way to relate to her peers.  And so for three years, every single morning before school was spent fighting and arguing about jewelry and the stupid school rule she hated and did not understand.  Searches and pat downs had to be performed every single morning in search for “contraband.”  One week she even took to drawing jewelry directly onto her skin with markers from head to toe.  It even included yellow splotches across her forehead, which was supposed to be a crown.  Needless to say this was exhausting for us and unbelievably frustrating from the home front.  It seemed like such a worthless and useless way to start each day with her.  

One day my mom just had it.  It was shortly after Christmas and Jazz had received some beautiful jewelry gifts that she really wanted to wear on the first day back to school after the break.  So mom said forget it and told Jazz she may wear one piece of jewelry to school.  After three successful days of wearing jewelry, she completely forgot about the jewelry and never mentioned it again, not once. 

Jazz was able to work out this three year perseveration in only three days because she felt listened to and successful.  With reasonable limits (i.e. only one piece of jewelry) and respect for her reasoning (i.e. other girls her age in the general education classrooms wear jewelry), Jazz was able to grow and mornings suddenly became more bearable. 

That is what a strengths based approach is about.  It was no longer Jazz who was perseverating.  It was the adults in her life who were perseverating on her perseverations and giving labels to a part of her brain that is never going to change.  Our perseveration became “fixing” her brain problem.  But Jazz has brain injury and always will.  That is never going to change.  However, the way in which we view her brain injury can change.  Rather than viewing it as something that is wrong with her, we can view it as what makes her unique and strong.  Jazz has high areas of interest and determination for seeing these interests through.  She also desires to be like her peers and develop areas of similarity with her peers, which is admirable considering the way most adults avoid these types of stressful situations.

When I shared this story and these concluding thoughts with everyone at the workshop, I was shocked when I received unanimous applause from my fellow attendees.  Dr. Dunn also asked me if she could use my story in her future presentations about this approach.  Needless to say, I said yes. 

Sometimes we just need to take a step back and ask ourselves, when feeling overwhelmed while working with someone with a chronic disability, “Who exactly has the disability right now?”

Much Love!

A Style of her Own Since Birth