“Hands on the table, won’t come off. Now my hands are stuck on the beard.” Matt repeated this mantra over and over in a monotone voice with a slight fear filled crescendo at the end. Matt had a lot of night terrors as a young boy. For a period of time, he was afraid of men with beards. Before you read anything more into this, Matt was also afraid of tires for awhile too. 

When we were little, mom would take us all grocery shopping with with her. Those were the days before child care in stores, but they did take the groceries  out to the car for us. Mom would have one kid in the cart, one kid under the cart, one kid holding on to the end of the cart, and one holding on to the front or walking beside her. I was worried because after awhile they put up a sign that said that the bottom of the cart was for groceries only. 

On the best days, my mom would give Mark and Luke quarters for the gum ball machines. One day there was a big sign that said there was a watch in one of the machines. Mark said that he was going to win it. Mom said that there wasn’t a watch in the machine, they were trying to bleed us dry of quarters. But much to her chagrin, Mark came back with the watch after one quarter. 

On the worst days, Matt would act up in the store. When Matt acted up you could almost guarantee that Luke would act up too. Luke did not want his older brother stealing the show. He demanded that mom buy him what he wanted or he was going to kick her. Mark and I would stand there shell shocked. Two introverts trapped like deer in the headlights. Sometimes mom would run out of the store crying, leaving behind a cart full of groceries. I always worried about what happened to the groceries that were left behind. Mom said she didn’t care. 

On one particular day, we made it all the way to the check out when Matt saw a man with a beard. This was at the height of his fear. He started screaming in horror, a high pitched I’m being murdered wail. All eyes on us. Mom held him down on the ground with her foot so she could write a check for the groceries while everyone stared. Just another day in the life. 

This morning I posted a blog entitled guardians. I was going to share another cure for autism blog instead, but I couldn’t. It was too hard. I am feeling anxious and unsettled today. That feeling you would feel if you were driving along the road and you hit a dog. Your stomach drops, something is wrong. Acid reflux. My stomach burns. I can’t eat without feeling nauseous. 

I spent the first two decades of my life in hell. I spent the next decade looking at other people’s lives and thinking about how wrong things were in my first two decades. I spent the last decade trying to forget about it. A new decade, what shall I do with it? Make peace with my past, it seems. Face my demons. 

Every time I tell you a story, I feel those raw feelings again. This morning I felt angry. Angry that people who were supposed to be supportive walked away. Is it my brother’s fault that he is autistic? My mom’s? Mine? I can understand if you can’t handle it. We couldn’t either, but we had too. Living with a violent autistic brother was no walk on the beach. We didn’t want it. Matt did not want it either. If you are looking for a Special Olympics success story, look elsewhere. What you will find is a raw story of what life was really like. 

Irrational worry? A lot of my irrational fears have already happened. 

My mom said that if something ever happened to my dad or her that we would live with my aunt and uncle. She said that I would like it there because they had a piano. My aunt was also a schoolteacher. Unlike my dad, who is an only child, my mom has many siblings. Every year my aunt and uncle, the guardians, would bring their two young sons over to go to the county fair with us. It was always the highlight of the summer. 

One year my mom invited them over to eat supper with us. Now this was a high risk venture as meal times were always stressful. We did not have people over for supper. Something happened at the table, what happened I could not say because I don’t remember anything out of the norm happening that day besides having company over for supper. I think that Matt had a meltdown and maybe attacked someone. I think it was my mom. Nothing out of the norm, so I don’t remember. I just remember Matt screaming. My aunt ran out of the house and locked herself in her car. She was upset and crying. I don’t think we made it to the fair that year. 

My mom was crying, she said my aunt and uncle didn’t want to be our guardians anymore. 

Music helps feel the emotions that are hard to share. On the happier days, my dad would play his records Grease and Baker Street loudly while I spinned in circles until I fell down. During the hard days, I would cry myself to sleep to Duran Duran’s Arena album. Mom cried to every Christian song that touched her soul. Mark was having a rough day when you could hear the chains rattle on his Black Sabbath album. With the exception of my dad, we all played musical instruments. 

Matt seemed particularly fixated on music as well. He would rewind his tapes and play the same song or same section of a song over and over. He believed that taping songs off the radio station would make it go off the air. He would get really upset to hear dead air after taping. He also believed that the radio station could hear him and they were angry with him for taping. 

Matt would sneak into my room and take my tapes. Worse yet, he would take my boomboxes. He took tools and disassembled a half a dozen of my boomboxes until they were in small pieces. Maybe he was trying to find the little guy in the radio. My dad was an electronic technician so it was not unusual to have radios or VCR’s disassembled on the table. I was so sad that my dad couldn’t fix my radios after Matt got ahold of them. Music was the only way I could process my raw feelings. 

Hauling wood is a hard job for a little girl. My parents, brothers, and I carried wood in the fall from our wood pile in wagons and wheelbarrows to the back door of our garage which had a back staircase into the basement. We stacked the wood in the basement to fuel our wood stove back before it was removed as an allergen. 

I was a strong girl and tried to make my parents proud by lifting the heaviest piece of wood that took up half of the little red wagon. Instead of making everyone happy, I got sequestered to indoor chores like laundry and dishes. Mom said I shouldn’t have lifted that heavy piece of wood because I could get a hernia. I almost felt guilty reading books and playing Barbie dolls while my brothers were outside working. Matt didn’t have any chores because he is autistic. 

One day while I was washing dishes, Matt came into the kitchen. He opened the silverware drawer and pulled out a knife. He waved the knife in my face and told me that he was going to poke my eyes out. I ran away. Mom put all of the knives up in the second row of the cupboard. Matt could no longer reach them. I had to stand on my tiptoes to put them away. The knives are still there to this very day.