Sitting here thinking about where to start. Most people would say the beginning, but honestly, my beginning wasn't all that different than most peoples. Let me start with this: I am a mother of not one, but two kids who happen to have autism. I guess I won the genetic lottery. They are quirky, fun, interesting, and talented. They are also challenging, rigid, and stubborn. You won't hear me mention bio-dad much because to be mentioned, you actually have to be there. I used to tell people he tried. Truth is, I think if it is convenient, then he will try. If he wants it his way, he will try. When it comes to day to day living and knowing your children, it's just not there. My children didn't have magic autism dust dropped on them at birth. It came from somewhere. From the inability to even begin to TRY to understand his children and all the research I had to do because of them, I have a good idea how this all came to be.
I remember the first moment I ever considered having children. I was sitting in my friends bedroom. Prom was right around the corner and dresses were being tested. Mirrors were being used. It was all very girly and unlike who I am. Amongst the flurry of being normal teenagers, my friend turned sideways in the mirror and said, "Come here." With the look of utter confusion, I got up and cautiously approached the evil of the mirror. Before I had a chance to react, she grabbed two pillows, stuffed them under our shirts and stated bluntly, that we would be cute pregnant. (Interesting side note here: she had a baby not a year later, but I digress.) I stood in that mirror and for the first time, I thought about it. I mean, really thought about it. Yes, I was 17. No, I did not intend to run off and make a baseball team and try to live on rainbows and butterflies. But, I thought about it. Did I want the whole white picket fence, perfect husband, and two and a half kids? I did, which is ironic. Some day, I may tell you about THAT particular irony.
Three years later, I found myself as round as I had been that day in the mirror, without the pillow. I was newly married and expecting a child. Oh, the things I thought about. Never in my life could I have ever imagined how it was REALLY going to be. All the books and television shows portray an idea of perfection. They give us the facts based on how it should be in typical society. I was young. I didn't know better. At the time, I would have sold a toe to stumble across the books I have now. When my son was born, I was elated. As he grew, I thought everything was perfect. I thought painting with his diaper was normal. I assumed he was just quiet and pensive. When he did start speaking, I did not even consider how late in the game it really was, nor did it occur to me that words like trapezoid and aquamarine were not normal words for a two year old. I suspected, but I was living in a dream. I did nothing. Not because I didn't think anything of it, but because bio was so adamant against any testing.
Then, along comes my daughter. When she would scream in crowds, I thought that was typical. When she had to sleep in dead silence with a blanket over her head so no light would creep in, I didn't think about it. And again, painting with the damned diaper. Everyone kept saying that it was a sign of intelligence or early artistic ability. Everyone can shut it! They weren't spending hours a day cleaning crap off the walls and floors. They weren't bathing their child three and four times a day. They had no idea what I was going through.
As both children grew, they spoke to each other, but not really to anyone else. I would find my son in my daughter's crib talking to her and she would talk back. It was a lot like twin speak. I didn't understand a word, but they were coming to know each other, which was huge because it always seemed to me that my son didn't have many friends. They still do it.
Not long after my daughter came along, I left with both children. I met my soul mate and started life again. I started with new ideas and new approaches. I had my son tested. I did not go through the grieving that so many do because I knew something was up. Yes, he had Asperger's. Great. Now, will someone PLEASE tell me how to help him. No answer. None. Everything my son has accomplished to his now scary 12 years of age, has been learned the hard way. We all learned the hard way. We read the books. I cannot name a thing we did not try. When none of it worked, we gave the book to a few less understanding family members and threw out all the rules. WE built this street. Not a therapist, or classes, or a counselor. We had to do it all on our own.
When my daughter turned three, she was mandated for early intervention screening for school. When her results came back, I cried for days. I never imagined there was anything going on. I mean, how was I to know she was speech delayed? Her brother didn't talk until he was four. I was told that she had SPD and a mild form of autism. I was told she had no dominant hand, therefore, no balance or ability to catch herself when she falls. She had weak fine motor skills. It was akin to being smacked in the face with a big fat "YOU ARE BLIND" sign. Hindsight. It's all about hindsight. Then the seizures started. Of course, as is par for the course in our family, they were petite mal, which meant if you weren't watching, you didn't see a thing. It was FOUR years before anyone other than me or Puck ever saw her have one. We lived that long with people thinking we were lying or seeing false things. Judgement about medication. The schools noted she was not doing well, but did not meet "the gap" for an IEP. That is a long time to hold your ground against the world, including those you love, but we did.
We have worked hard to get to where we are. I have worked hard to be a better person and mother for my children. We tried seeking help, and until recently, nobody answered. I finally understood how my kids could get so frustrated because even when they were speaking, nobody was listening.
We have made major changes on Autism Street in the last year. They have been amazing changes. When we stopped listening to the world, and started listening to ourselves, it made a world of difference. No, we aren't conventional, even from an autistic parent's point of view. So what! Our children have made greater strides this year than ever before.
Recently, my son asked me how I always know what he is feeling and thinking. I told him that it's because he doesn't communicate like everyone else. I had to learn, from the time he could walk, a whole new way to listen. I had to learn new sets of body language and facial expressions. I told him that even though it is hard for him to understand universal body language and expressions, that I am bilingual. I speak society AND autism. I don't always have the answers, but I was never afraid of a little research. It is a very good thing that I am such an awesome multitasker, because I would be in so much trouble if I wasn't. If you have an ASD kid, you know what I mean. Try having a four way conversation with another adult and two children with different "forms" of autism. It requires you to maintain three different ways of thinking.
Our life is exhausting. We don't sleep much. I forget to eat quite often. As an example of how chaotic life can be around here, it took me a year and a half to learn my address. We laugh, cry, scream, pull hair, flap hands, bounce off walls, feel crazy and sane at the same time every day. This IS our life. If you don't have kids on the spectrum, you may not understand this, but our life is AMAZING! Yes, it is hard. I think that the difficulty is what makes us better at it, day by day. I see families out there, with their white picket fences, "wonderful husbands", and two and a half kids and remember I wanted that. After years of struggle and tears, I wouldn't trade my life for anyone else's. Our family is more functional and bonded than most of those we see around us. Our way of life doesn't leave enough time for huge arguments that you can hear through the walls. Our way of life requires us to be more sensitive to what isn't being said. It requires us to communicate on all levels, at all times. It makes us a better family. My children don't "suffer" from autism. My children were blessed with it.
To sum it up, society can bite me. Convention can get the hell out of our way. We do it different. We do what works. But, above all, despite the crap we swim through day to day, we are happy. When we tell a story, it may sound negative to the world, but it's not. It is a normal in our life. And what a life it is!
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