Life with Autism or Seeing Green

April is Autism Awareness month. I thought I would take a minute to Blog about what it is like to be the parent of a child with Autism. Autism is not a disease, there is nothing "wrong" with Erik. I love the phrase "differently abled" I think it fits Autism to a tee. There are normal everyday things that Erik will never get. He may never understand sarcasm, but he sees and understands numbers in a way that is astounding. His handwriting may never be legible, but he paints the world as he sees it, in colors so vibrant and vivid it is almost painful. There are so many people who are searching for a "cure". I don't want to fix Erik. I want others to understand him.

Erik is very literal. We were at a BBQ a couple years ago. Erik saw a bag of chips on the counter. He asked if he could have some. The owner of the chips said "of course those are for the kids. Why don't you toss them out there so everyone can have some." Erik picked up the bag and threw it off the 2nd story deck down to the lawn below where the kids are.

Erik is obsessed with construction equipment. He is fascinated with how the buckets move and turn. He knows the model number, weight, payload and top speed of every CAT and John Deere construction machine. He loves the feel, smell and even the taste of dirt. He is 8 years old, and he still will taste the dirt he is working in.

Social cues like jokes, sarcasm and feelings don't translate well in his brain. He has feelings and a sense of humor, he is not a robot, but he has trouble expressing them. We loved Doug the dog's joke on the movie UP. It was an Erik joke. His jokes often end in something dead. He has a fake courtesy laugh for when he knows he is supposed to laugh, but doesn't get it. The first time I heard him laugh for real was 3 years ago. He was watching Sponge Bob. It was a delightful sound. I wish we heard it more.

I have learned to fight the important battles. Some things are not worth fighting about. Really. It's true. I wish more teachers had this kind of flexibility. Erik's mainstream teacher sent a note home asking please send tennis shoes for Erik so he can run with his class. I returned this note. "I would love to send Erik with shoes that would be more appropriate for running than Crocks. The problem is if I did he would run barefoot. So we need to decide, is it more important for him to wear shoes, or to have tennis shoes under his desk?"

Parenting a child with Autism is frustrating, especially in public. He looks normal. No one can see that he is different. No one but me knows that the noise of people talking, or music playing, or the spectrum of light in the room are painful to him. That running in circles, flapping his hands and making weird noises are his efforts to communicate his discomfort. They see a "bad" kid and an even worse parent. I don't get a special parking place, a Lassie like dog that will communicate for him, or a sign of the street "watch for kid who is as good as deaf when he is thinking of something else. " People don't give me understanding looks when he rearranges their groceries on the conveyor belt, or ask if they can help when he is trying to escape. No one asks what can we do to help Erik be more comfortable at school, or at church or at Grandma's. They all look at me with that "do something with your child" look. It is hard to brush all those looks off and move on.

Educating a child with Autism is a battle. Every day I fight. I fight with teachers, I fight with administrators. I fight with insurance companies. I am lucky enough to have great doctors on my side, but I know lots of parents who have to fight with them too. It makes me tired. I don't feel like I am asking for a lot, but what I am asking for is different from what they are used to. Our public education system does not do different very well. So I fight. I don't have any other choices. My son goes to school to learn how to work with others. I could teach him at home. He would learn quickly, it would be less stress for me. He would end up a genius stocking shelves at Wal-mart because he can't relate to other people.

I try not to think about the future. It only makes me sad. Will he be bullied in Jr High, probably. Will he ever drive a car? Let's hope he hits fewer things than on his bike. Date, keep a job, live on his own, have a meaningful relationship with another person, be a parent himself? These are all things I can't even picture it right now, It is overwhelming. A year ago I couldn't picture him wearing any other color than green. There was a time when I wondered if he would ever walk, or speak. So we live today. Today he was ready for the bus on time, homework finished, Crocks on no growling. So far so good. We have come a long way.