With that being said, I live in a city that is divided by the Genessee River. There is the East Side and the West Side. Think of the West Side Story and that is our city, especially in the Autism Community.
After I recovered from Cancer I was isolated and alone in my family's world of Autism which included Sam, Mina and me. I desperately wanted friends. I joined my Autism group which consisted of women and I drove to the East Side of the city to do my part in the fight for Autism. It didn't matter what the fight was about, I wanted to be there to be part of it all. It didn't matter what committee I needed to be in and I was there ready. I was there ready until I finally realized that I wasn't an East Side Mom of Autism. I wasn't in the Sorority.
It most likely sounds like I am moaning and groaning. I imagine people shouting into their computer screen, "Get over it Woman!" It boils down to one thing. I got hurt. I tried and tried and tried again to put myself out there and I finally had to quit. My son is going through a situation that no child should go through with the restraints and seclusions and the help isn't there. It devastated me that I asked a woman to attend an IEP meeting to be told, in not so many words, that it wasn't part of her job description. It wasn't what she said exactly but I got the point. My problem was that I asked her as a friend. I am a Westsider, she is not my friend.
I think the funniest memory I have that cracks me up is what someone once said to me at a meeting. To set the story up I must explain that all my money goes into my kids. When you only get so much you do what you can. I don't have a lot of nice things to wear and I tend to wear the same thing over and over again because I don't spend the money on myself. I remember the woman standing next to me sneering saying, "Your clothes, you need to do something about your pants." Ha! I wish my pants were my biggest worry. There was one other time that a woman brought an entire bowl of raspberries and blackberries to a meeting and I just stared at that bowl thinking, "Wow, that must of cost a lot of money." They were delicious by the way. I have dreams of being able to afford them to sprinkle some sugar on them and taste the goodness. I will always remember that bowl of yummy fruit.
So why am I talking about these woman? I just desperately need to get it off my chest or it might just kill me in a literal way. Stress is a killer and I have already fought depression and cancer and won. I also think that maybe people would have a better understanding of how Autism isn't just for the rich. It is difficult to listen to people talk about the therapies they paid for and the education they paid for and the gluten free food that they paid for. I can't afford any of that. It is even worse to sit and listen about their vacations to whatever resort they are spending time at. I am not talking about any particular person, I am talking about anyone that is more fortunate than me and my family. I wish I could be happy for the more fortunate ones. Sometimes I feel this stabbing pain in my chest where my heart hurts so bad because I can't do more for Sam.. I selfishly say that it hurts me even more to know that I am not in the "in" Autism group.
Here is the clincher. I have the deepest respect for these woman. What they do is amazing. What they fight for is admirable. They spend hours upon hours doing what they do and they do it well. We all are walking in the same line. The lines just happen to be parallel on opposite sides of the city.
Another difference is that they are educators and I am an activist. I get angry and I let people know in the nicest way possible. I am not afraid to carry signs and walk on the street corner. I am not too sure if I could yell into a bullhorn but I could stop and talk to people on the street and hand out flyers. I would be good at that. I start groups on facebook and I invite everyone in my Autism Community and I post whatever I can with responses from my fellow activist from California, Ohio, New York City and even Canada. I have seen e-cards that say that "In my Autism world all of my friends are in a computer." I just wish I had more in my backyard that would stand on my street corner with me. My New York City friend will, she has already informed me and I think that is the coolest gesture anyone has ever made on my behalf. I will stand on any street corner with her yelling into our bull horns to stop the abuse.
Why is all of this on my mind? My son goes to the Autism Camp on the East Side. Sam was given a scholarship. The Autism Camp is probably one of the best Autism Camps in the world. It is an inclusion setting and Sam thrives from amazing workers that expertly run the Autism side of the camp. I have these woman to thank for that too. I just wish I was part of their Sorority. It is difficult to pick up my child and stand side by side with another person with a glass wall between us having nothing to say. It makes me sad.
Do I have friends? You betcha! I have the best kind of friends that I am extremely thankful for. I am thinking that I just need to get over myself.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
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