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.

A Tribute to Princess Peach Honey Pie

I apologize for my blog posts being a little macabre lately, January has not been the best of months for us. First our dear Mutti passed away, and then we lost our beloved Honey.

About a year ago, we decided to sell our bloodhound Max to a breeder in Delta. He was a little too much dog for our family, and despite the our love of his slobbery kisses, we knew how happy he would be hunting and siring champion hunting hounds. I have a soft spot in my heart for hounds in general, the floppy ears and sensitive eyes get me every time, so when I happened upon an add on KSL for a female foxhound, I knew this was the dog for us. I drove out to Grantsville the very next day and picked up the dog we named Princess Peach Honey Pie.

She was a great dog. She loved to cuddle and was fond of all the kids. Lowell and Honey loved to sit in the window, and watch cars go by. It still breaks my heart when he comes over and wanders about calling her. Bubba of course was her best friend. He always wished she would sleep with him on his bed.

She loved to run. Inside she was a little shy and timid, but give her some open space, and she would run, and run, and run. This proved to be her downfall as on Tuesday Jan 26 at about 3:00 pm she escaped the house and ran directly into traffic on 4700 South. she was struck by a car and killed instantly. We really miss her.

Memories of my Mutti

My Mutti died this week. That is my Grandmother, my father’s mother, my Far Mor by how my kids keep track of it. They say your whole life flashes before your eyes before you die. I think thats wrong. I think your whole life flashes before the eyes of those you love as you are about to leave. The memories they will always keep, even when you are long gone. Here are the things that flashed before my eyes.

My earliest memories of my Mutti are of her skunk. I am not sure I realized it was a skunk, just a little black cat. I remember it following her in the back yard.

I remember dresses. lace and pinafores. And one with an apple on it. To remind me I was the apple of her eye.

I remember her rocks. Giant jagged boulders great for climbing and reaching the bottom branches of those huge maple trees. They were like small golden mountains. We were all so sad when grandpa trimmed the branches and we couldn’t reach to climb those trees. I loved to lay on the smooth top of the boulder and look up through the red maple leaves to catch glimpses of the blue sky. I fell in love with plants at Mutti’s house. She had trees and shrubs I had never seen before. Purple magnolias, Japanese maples, pear tomatoes, ferns, fuchsias and begonias. I even loved those huge junipers. They were great to hide in.

I loved her living room. The purple velvet victorian couches were not the most comfortable, but I loved to sit in there. She had these crystal lamps that were clear and bumpy on the bottom, and had crystals hanging from the shade like dozens of sparkly earrings. I wanted to wear those crystals in my ears so bad! I probably still would if I could! There was a crest with swords sticking out of it. One of the swords was broken, and I always imagined that someone had tried to pull it out at a time of great need, like if a robber came to the house, or perhaps to vanquish a dragon, like St George in the sculpture on the mantle. The mantle was also graced by Venus (I often wondered what the punishment had been for breaking off the arms of Mutti’s statue! I always suspected Uncle Dick) and 2 geishas. She had 2 paintings of ballerinas, in another room. I think they were paint by number, but I thought they were beautiful.

One day I was coloring a picture of Daisy Duck. I could not decide if her shoes should be pink or purple, so I colored one of each. Mutti laughed and told me that her mother would wear different shoes all the time. At the time I thought that perfectly sensible.

My cousin Toph had a birthday party. We had a treasure map. We drove up the canyon in the rain and dug up a treasure chest. It was filled with pearls and gems. We were all thrilled! Richard wore a string of pink pirate pearls for years after that. I heard someone whisper, “Mutti gave us all her old costume jewelry”. I couldn’t believe she didn’t want it anymore. Mutti wore A LOT of jewelry. I think I would feel that same childhood thrill if I got to open one of her jewelry boxes now. I think I would fight Richard a little harder for the pearls this time.

Mutti fed us Fruit Loops until our mouths hurt. We didn’t get sugar cereal at home, but Mutti always bought it for us. I was so glad when I got a retainer, because it protected the roof of my mouth from the abrasive cereal.

One year she bought Natalie and I Strawberry Shortcake blankets. I saw one at my mom’s house in Minnesota last year and wanted to stuff it into my suitcase when no one was looking. I didn’t though, Kissy probably has it.

Their house was small, but it was full of love, and chocolate and wool socks, and that is what I will always remember.