Monday, March 1, 2010

Different not Less

I just finished watching the HBO movie "Temple Grandin" and it lived up to not only its hype but also HBO's phenomenal standards of movie (and series) making.  For me, someone who has read a lot of Temple Grandin's books, the movie did not contain surprises because I already knew a lot about Temple Grandin and her life and a one and a half hour movie skips over a lot of details which are found in her many books.  Still, I think this movie will be the Autism 101 for people not familiar with Autism (in the same way that the movie JFK is a sort of Kennedy Assassination 101) and for those intimately acquainted with Autism (or the "spectrum" as those of us in the know about autism refer to it), it will serve as a touchstone, a source of inspiration and hope.  At any rate I think this movie should be seen by everyone simply because its message is so clear and transcends  the life of this remarkable woman. 

Still, I couldn't help seeing my daughter in that movie.  I do know and have known for a long time that her mind works differently.  I am not sure if she thinks in pictures in the same way Temple Grandin does but I do know that it is always easier to show her something than to tell her.  So many times during the movie there were scenes where someone was talking to Temple and the wheels turning in her mind were distracting her from the conversation and pulling her into her own thought processes.  We go through the exact same thing with Maya on a daily basis. It is often difficult to get her attention, and most of the time I attribute it to the fact that she is easily distracted and doesn't want to pay attention but over time I have realized it is just because her mind works differently, visually rather than linguistically.  Daily routines became much easier for us when we started to use pictos to explain to Maya what was expected of her.  Maya has an amazing memory and I have often been astounded by her ability to remember things from several years before.  She loves to look at photos of herself and I often set up slide shows on the computer of photographs we have taken and she will often relate to me the exact circumstances of those photos, even if they are from many years before.  We have these pictures of her from when she was maybe 2 and she was playing in her kiddie pool, we had just taken a few photos of her when all of a sudden we were chased from the outside due to a sudden summer shower.  A month or so ago Maya was looking at those photos which she hadn't seen for a couple of years because they had been accidentally copied to another folder on our computer and I found them by accident and she said, "that's me in my pool right before the big rain started".  I was astounded that she could remember that far back in so much detail.  At first I thought she must have been looking at these photos with Leo recently and he must have mentioned it to her.  The next day I showed him the photos and asked him if he had shown them to Maya recently and mentioned to her that they were taken right before a big rain storm.  He said that he hadn't seen those photos in years, and that actually he wasn't here when I snapped the pictures so he had no idea that a rain storm had interrupted this particular photo session.

Another point illustrated in the movie which really hit home was one scene where Temple is riding in a truck with her aunt and was relaying a favorite movie to her, one which had obviously been a topic of conversation before and she started talking very quickly relaying not just the movie but remembering details of every time she had ever watched it.  That scene really made me catch my breath because at thast moment I understood that Maya does this a lot.
When Maya first started in therapy, I used to tell her teachers that it was difficult to "be in the moment" with Maya as when I asked her routine questions about her day, I was never sure that she was relaying to me the events of that particular day, or the day before, a month or a year before.  She would often relate stories to me of things that I knew happened before and when I would ask her if they happened today, she would say that they did.  When Maya first started going to her current school, there was a boy in her group named Daniel.  He was a very sweet boy, but he had problems communicating, he spoke but he was very difficult to understand and he and Maya were like gasoline and a match.  They often had difficulties in activities together because they could not communicate or sufficiently understand each other's needs or wants and this often put them in conflict iwth each other.  On one of her first days at school, during recess she was playing outside in the sandbox and Daniel was there and a fight ensued over how to fill up the buckets with sand.  Maya wanted to use the bucket to scoop up the sand and Daniel wanted to use the shovel.  Due to their young ages and their inability to communicate adequately, a fight ensued where Maya threw a bucket at Daniel hitting him in the arm and Daniel hit Maya with his shovel.  One of the teachers quickly intervened and the whole thing was over in a second.  Still every time Daniel's name came up, she talked about how Daniel hit her in the head with a shovel and often if I asked her how school was she would relay the same story to me.  For a long time I thought Maya was just not capable of relaying to me her daily activities in a coherent way, but I could not figure out why this incident with Daniel kept coming up over and over.  For a long time I thought it was because she felt badly about it and I often tried to talk with her about it to try and reassure her that sometimes people argue but it is okay.  Each time though, she just kept going on and on about the incident with Daniel in the sandbox.  At the end of last year Daniel was sent to a different school and she has never brought up the incident since so I figured that whatever was bothering her was over.  When I saw this scene in the movie today, I think I finally figured out that Maya thinks with associations, she associates things or people with references in her own life and when those things or people are brought up so is the association.  So, today when Maya came home from school I tested my little theory.  I took out Maya's class picture from last year and I showed it to her and I asked her to name all the kids in the photo, most of whom have gone on to other schools.  She named them all including Daniel and then asked me to read her a book.  I got through the story and then asked her how school was, she said her usual answer "fun" and then I asked her if she played outside today, she said she did but then told me that Daniel hit her in the head with a shovel.

As the parent of an autistic child, I won't say that I don't worry about Maya and her future.  She has some obvious delays.She still doesn't know her alphabet, which means that at the age where her neuro-typical peers are learning how to read and to add numbers, Maya is no where near achieving that.  Still while her traject may be different from other children, I am so proud of how far she has come this past year and a half.  I don't know how far she will get educationally or how much she can achieve.  Will she be able to read, write, go to college, be accepted by her peers?  Those are still questions without answers and I won't lie to you, they still keep me up nights and cause me to routinely well up.  Like I have said before, we try not to focus on the bigger questions, but just try and help Maya each day to build her confidence to take those steps which are so difficult for someone like her.  I don't know what my daughter's capabilities are, but what I do know is that we will continue to help her achieve as much as she can, no matter how much that actually is.

My daughter is a kind, sweet, sensitive, intelligent girl.  People like Temple Grandin, John Elder Robison and many others are paving the way by giving people a greater tolerance and compassion of people who are different.  I am grateful for them and for that beautiful, interesting creature who I am priveleged enough to call my daughter.  Autism is not something to be ashamed of, people diagnosed with autism think differently but still can achieve and that autism (or any special need for that fact) is something which deserves our compassion and acceptance.

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