Tuesday, July 26, 2011

Autism: Living in a literal world where "you're different from the rest.' Jimmy Reagan

Girl with Eyelashes by Jimmy Reagan
I recently read "the curious incident of the dog in the night-time." by Mark Haddon. The main character is a boy with autism. He sees the world very literally. This character gave me some recent insight into how Jimmy may view the world. The book was recommended to me by Gloria Smith, a lovely woman that we met at the Edina Art Center Young I: A Teen Self Portrait art show. Jimmy's self portrait won an award at this juried show.  His self portrait was vastly different from the others at the show, confirming his tag line when he is upset, "You're different from the rest." Being different as an artist is a gift and we tell him just that. Being different from those in mainstream society is another thing.

When we arrived at the show, we didn't know if Jimmy's portrait would be on display. When we walked in, his portrait was the first one we saw.  In an overwhelmed and excited motion, we quickly moved to view his portrait on display and take his photo with his picture. As I looked at his portrait, the space we were in became more crowded and people were offering congratulations.  I was a bit baffled.  Then Brian said, "looked there is an award next to Jimmy's portrait." A lovely couple, Phil and Gloria Smith, came up to Brian and I to offer congrats.  Jimmy nervously looked around and spied the video section of the Art Center….he made a b-line for the video shelf. The Smith's reinforced how proud we felt about Jimmy's award and recognition.  All along, I thought, the judges had given Jimmy this award because they knew he had autism…they were being nice. We learned that they didn't know about his autism. The judges discussed why Jimmy's work was so unique….it was "different from the rest." The Smiths watched Jimmy curiously.  Jimmy rejoined our little discussion and Phil asked Jimmy, "what grade are you in?" Jimmy responded, "I am six years old." Phil and Gloria had somewhat stunned expressions on their faces since Jimmy was clearly not 6 years old. I responded with, "Jimmy has autism."  They were very surprised and interested. In fact, they were fascinated. Gloria is an artist and was really interested in Jimmy's perspective. She asked if I had read Mark Haddon's book.  I hadn't.  As  a person with dyslexia, reading is laborious for me and I don't read as much as I should. Gloria mailed me the book which I completed a few months ago. She was right, it is a must read.

Since "the curious incident of the dog in the night-time," is written from the perspective of a boy with autism, I found the book really enlightening as to how Jimmy might view things since he can't verbalize it. I found a new perspective.

When Jimmy was entering kindergarten, I was so excited that he would take a bus to school.  In the previous years of therapy, early interventions, etc…, I drove Jimmy 500 miles a week.  This didn't make for a great experience for his siblings who couldn't share play dates at our home or a park since we were usually in the car or at therapy. So, the idea of Jimmy taking a bus to school was a great relief.  He liked being in the car. The first day the bus arrived at our home, a half ton bus with a friendly bus driver, Jimmy refused to get on the bus.  I was shocked.  I had to get on the bus with him riding to school while Dad drove in the car behind us. This routine lasted for awhile. Jimmy was always horrified by the bus.  I was at a complete loss for words.  In near tears I thought, he HAD to ride the bus…I needed relief from our schedule and his siblings needed a schedule that focused more on them. Autism had taken over our lives. After a few weeks of terror when the bus arrived, I realized what might be going on. This was the first time that I recognized that Jimmy's perception of our world was different and his fears were as well. One of Jimmy's favorite books/program was the Magic School Bus.   Miss Frizzle magically takes student on adventures that usually involves some mutation of a half  ton school bus.  I asked Jimmy if he thought the school bus was going to fly and he said, "yes." Okay, now I get it. We assured him that all the bus would do is drive to school and home. We visited District bussing and he checked out many busses. The District Director and mechanics assured him that their busses were different and  no transforming would occur. He was convinced and learned to love his drivers and the ride to school. Chalk this one up to my first recollection that those with autism often have a literal interpretation of life experiences and what they see.

Girl with Red Hat by Jimmy Reagan
Both Girl with Eyelashes and Girl with Red Hat
were created by Jimmy Reagan.  He was looking at the
same photo of a girl with a red hat.  These are
two very different images.
The topic of my last blog discussed Jimmy's upcoming Guardianship hearing. I have stressed about this date and the experience. But, we have shared little information with Jimmy about this event or at least, I thought so. One of our concerns has been Jimmy's movie talk at the hearing.  The movie lines all seem to revolve around lawyers, going to jail, someone being killed and courts. Brian and I met with our attorney to make sure that the judge understands that these are clips from movies that he watches and not reality.  She was grateful for the heads up and said that she'd advise the court.

Jimmy's movie talk seems to be increasing as is his voice volume lately. Typically this is a sign of stress for him.  Jimmy has also been sneaking foods that light him up like a firecracker.  He has been out of sorts for reasons I could only guess until yesterday.

Yesterday, I had a stunning revelation.  Jimmy usually loves Yoga Mondays. Yesterday, was a Yoga Monday. He was squirmy to say the least.  Bridgett our beloved yoga instructor called me into the room where yoga takes place. Bridgett massaged Jimmy's feet while I worked on his arms and hands.  In quiet conversation between Bridgett and me, she asked about the pending court appearance.  Jimmy looked right at us and said, "August 15th you go to see the judge."  He looked panicked. August 15th is a Monday like yoga Monday and is our hearing date. I don't believe we have shared the court date with Jimmy so I was shocked he knew. Evidently, he has overheard our discussion and sensed our distress. I asked if he was scared and he said, "you go to jail." Suddenly, I realized that he thinks that he is in trouble and going to jail….that's what happens in the movies. In his mind, apparently, sneaking food that makes you sick is cause for jail time. I was sick to my stomach.  We reassured him that he was not going to jail and that he hadn't done anything bad to meet the judge. Meeting the judge was a good thing. Later last night I sat on the couch with him and he looked at me intently,( he typically only makes eye contact when he is intent on communicating) he said, "I so scared, I so scared, I so scared." He had tears in his eyes.  I don't recall another moment in his life where I saw tears like this. I can't say that I know exactly what he was thinking….but, fear was very evident. We hugged and he seemed to feel better. We are working on a social story that I hope will help quell his fear and move me past my own concerns. I've suggested that we bring the judge some of his note cards and we'll go out for ice cream when we are done.  All these things seemed to offer him relief. Today, was a better morning.

Understanding a person with autism can be very challenging when you can't/don't see the world through their eyes. Jimmy's art has allowed him to be "different from the rest" in the most positive way imaginable.  Yet, his autism also forces him to interpret the world in a way that is" different from the rest" of us which is full of fear and misunderstanding.  

Life is a journey full of many learning experiences. Those with autism have an exaggerated difference in their perspective of the world that teaches me to be more understanding.  I can't walk in your shoes but, I can try to comprehend the place you are coming from.