Friday, July 17, 2009

The positive side of autism?

Today was our babysitter's last day. She was AJ's aid during the school year and she has been coming over in the afternoons, picking the kids up from summer camp and watching them 3 days a week while I edit my wedding videos on the computer. She is getting her special ed certification and she is a lovely 22 year old, brilliant teacher/friend. She is already married and building a house at age 22 which I find baffling but don't harp on.

Anyway...today, her last day, she told me that she read a book recently about the positive side of autism. Of course I have already forgotten the name of the book and the author (memory lapse due to either nursing or past large doses of Zoloft before my anxiety disorder magically disappeared by itself with my most recent pregnancy). Sorry, I digress. So she told me that in this book the author visited different autism families and asked them what was positive about autism and at first they were shocked or confused by the question. Then they answered with things like, now they look at the small achievements instead of expecting large ones.

I didn't think that seemed like such a positive thing although I have a feeling that there are probably some amazing positive stories in this book and I probably need to get it. So at that point of the conversation with our babysitter I was thinking about what I think about autism. I don't really think it is positive really but it is hard to sit on that conclusion since my little girl is so completely amazing and happens to have autism. I used to think that the autism made her amazing. Now I think that her being amazing has nothing to do with the autism and that the autism actually makes it difficult for her to express herself properly. I have another way of explaining this that goes a little below the service. Here is the disclaimer...if you are squeamish about grief, stop here.

Let me start with the phrase, "All Souls Are Equal." I first heard this phrase when I was doing a photo montage honoring an amazing psychiatrist who ran the Center For Autism and Related Disabilities, and had passed away. For the montage, his former employees and his freinds sent in little notes and blurbs and recordings of what they found special about him.
I had no idea what his friend was talking about when she made this whole recording about how she loved that he taught that all souls are equal. I had no idea what on earth she was talking about and I didn't really care because I just needed to get the photo montage done and looking good and it wasn't my job at that point to try and digest the meaning of peoples sentiments.

And I didn't think of it again until a couple of months after my sister's funeral. My sister had an open casket funeral and I remember when I went to look at her I was shocked that she wasn't in there. Her body was there looking alarmingly strange, but after my first glimpse I found myself looking frantically around the room and in the air around her for her soul. I have never understood what a soul was before but now I knew exactly what it was and I suddenly knew that her body there in the casket was a house for her soul. Now her body couldn't house her soul and her soul did not have a way to express itself and I wondered where it was now. Perhaps her soul is in heaven, whatever that may be. What I know more than ever is that in this lifetime I will never know where her soul is...although I have a feeling that it isn't that far away. In fact I remember feeling an odd pang of relief when I saw that she wasn't in there because she wasn't going to be buried. Her body was, but her soul, the part that I loved, was somewhere else and was not going into the ground.

So how does this relate to autism? Since I now realized that our bodies are simply a house for our soul, I also realized that our bodies fail us sometimes and make it more difficult for our souls to express themselves. When our bodies are no longer able to express our souls, our souls have to leave our bodies. So yes, all souls are equal even though not all bodies are equal. It was a life-changing moment the evening a month or so after my sister's funeral that I remembered that phrase and realized exactly what they were talking about.

I think that autism makes it a bit harder for AJ's soul to express herself. BUT there is something positive in this because she is able to express herself in many different ways that she would not have done without the autism. Maybe I am reaching here, and we do "reach" for the sake of love and happiness. But she is able to live in an amazing world that seems to me, from the outside, to be a beautiful one. I have learned a new level of patience that I didn't know existed in me. I remember reading that Madonna said that very same thing, now that she was a parent, yes, Madonna the singer. And I remember that weird tidbit of information because when I read it i was like, yes, me too, wow. I digress again. Sorry. So the positive side of autism. In conclusion, I don't think that autism is who my little girl is. I think it is a complicated maze that mixes up how she expresses herself. Sometimes it is wonderful and amazing, sometimes it is heartbreaking and down right frustrating for everyone. Do I think she would be even more amazing if her autism wasn't in the way? Well, yes I do. I think that autism "got" her because she is such a sensitive brilliant little girl. She was one of these babies who spoke at 10 months and was singing full songs at 12 months. She was a genius child, then autism struck and it was like the book, "Flowers For Algernon." Her skills just started to back track on themselves. At first, at 14 months she could work the CD player like a teenager, finding her favorite song, memorizing the number of it and then dancing to it. Then at age 2 she suddenly couldn't do it anymore and I remember both she and I were shocked and scared. That is when I called the pediatrician and the autism journey really began.

So did I answer this question OK? Is there a positive side to autism? I think my final answer is, yes. But I do reach for it, and I do hold on to it...cling on to it. What I DO know is that I have an incredible child who happens to have autism. That, my friends, I am certain about.

2 comments:

Unknown said...

I see where you're coming from. Autism, to me, is a physical sickness (at least Hayden's is). I believe a lot of his actions are due to his health problems. I don't really care that my son is different from others (this is the black sheep talking), but I do hate it that he hurts.

Amazing story about your sister, by the way. I enjoyed it. :)

me said...

I see where you are coming from. It is different for us because AJ is never sick. In fact, when she is sick and gets a fever, her autism goes away. I think that is has to do with the fact that she does have a type of auto immune issue in so far that her antibodies are fighting against her system. Then when she gets sick, they fight against the illness and leave her brain alone, and suddenly I have a kid with no autism. It is amazing, and I think a different kind of autism. My "typical" son is always sick though. I know there is a common thread to all of this and I hope answers come sooner than later. I bet you do hate that Hayden hurts, that is awful. I know he has a super mama who will support him and love him like he needs. He is a luck boy to have you.