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. 

I think that I can safely say that Matt was the first autistic child in our small, rural public school. Special Ed classrooms were a futuristic concept. Well, the future smacked them right in the face when my brother walked through the door. They had to develop a new classroom without the space to do it. Someone had the brilliant idea of splitting the library in half and making the other half the special Ed room. The bookshelf divided the two rooms. Right next to the bookshelf was a huge box, the naughty box. When my class went to check out books, my brother was in that box kicking and screaming. The kids laughed, pretty damn funny, right? Despite everything I still love books. 

Recess was the same. They threw everyone out on the playground together. There was a group of older girls that would follow him around mocking his motions and calling him retard. He used to flap his hands together and make a motion that was like running in place, we called it flapping. 

Ironically, my mom received her college degree in a field where she works directly with disabled children. She worked in the field before I was born. She became a very strong advocate and support for other families going through hard times. I am so proud that she is still working full time as she is entering her late 60’s. Still advocating, making a difference, and finding true compassion that can only happen from living it. 

As Matt got older, the school could not handle his extremely violent behavior. They basically kicked him out. Just like my last blog, swearing in church, he became entirely home bound. The school sent a retired schoolteacher to the house to educate him. My mom had to really cut back her hours at work. She decided that since Matt was pulled out of school that she would pull the rest of us out too. I was homeschooled from 8th through 10th grade. I will save that for another blog, those experiences I never shared with anyone who didn’t know about it…