Luke’s visit, part 6

I don’t like it when people touch me, neither does Mark.

Luke has always been an affectionate guy.

Maybe it just boils down to personal preference. We had the same upbringing.

We remember the bite marks on our arms, the scratches, head butts, eye pokes, kicks, punches…that we received from our autistic brother Matt.

My dad seemed afraid to hit or hug me. He would tickle my brothers and I which was miserable because he just wouldn’t stop when we told him to.

Touch was not usually a good thing, but I did like my grandma’s hugs.

My dad was not gentle in any way. He would squeeze my mother in hugs too tight until she would cry out…stop you are hurting me. Her cries would draw in my little brothers. They would jump on my dad and try to get him to let go while he swung at them like pesky mosquitoes. It was all a game.

Now Luke was a mama’s boy, which really seemed to bother my dad. If anyone tattled on Luke, he would get it. Mark and I never got spankings, but Luke always seemed to get in trouble. He hated my dad and did a lot of things to bother him like cutting the cords on his electronics. Mark and I never really did the things that would fuel my dad’s anger.

There are some things I feel bad about. Sometimes my dad would fly off the handle with Luke about minor things that I tattled about. There was also a period of time that Luke looked to me to be a second mother. He clung to me and I pushed him away.

There were times when my dad was a little rough with Luke and Matt. But most of the scars came from Matt. He would out of the blue attack someone. It would bother me that no one told him what he was doing was wrong. In fact, if we tried to defend ourselves or retaliate, we were punished. He couldn’t help it, but we could.

It was always hard to see Matt hurt someone, stranger or friend. Sometimes we could see the signs beforehand that he was was agitated. I always felt guilty that I couldn’t stop it from happening. Sometimes I felt responsible for it. Maybe if I noticed sooner, I could’ve stopped it. Why should I feel responsible for my brother’s actions?

His actions had a direct effect on my life. It was the reason that friends weren’t allowed to come to our house. It was the reason I lost friends. It was the reason for my isolation. Matt was so violent that he wasn’t allowed in school for 3 years. A teacher came to our house for Matt. My mom pulled us all out of school. I spent one year of middle school and two years of high school at home. I only saw my friends a couple times a month.

My cats became my friends. Sometimes Matt would hurt them. If they tried to come in the house, my dad would pick them up by the tail and throw them out. But I always let them sneak in my bedroom window.

There was nothing normal about my childhood. Yet here I am trying to live a normal life.

 

Autism’s sibling, journal 3 part 2

One time when mom’s old friend stopped by, Matt threw rocks at her car and she left..

What I don’t understand is why the nice friendly Christian ladies at church didn’t offer to give us an hour break from Matt. We never got a break. I only had two friends that lived with me, my two cats. But Matt was mean to them and they eventually ran away. Life with him has been hell. Even though Matt is small, he is very strong.

I also have a lot of nausea. Once my depression and nausea got so bad I couldn’t eat. Nobody cared about me. Nobody cared about Mark either. They cared about Luke because he was a troublemaker and got a lot of attention. Sometimes he would even be as bad as Matt.

What I hated most was talking to relatives. They always asked how Matt was. That really hurt because it is like I don’t exist. Usually people ask how you are. But imagine if they asked about your brother and not you. It hurts to know that people really don’t care if I’m alive.

I remember when the three boys were wild at the table. Mom had to feed them. Mom and dad would fight. Mom would get upset and go upstairs to cry. I was her best friend. I would talk to her and tell her that things would be better tomorrow, but it never did. There were always more problems or more doctor bills. Things are better now, but I still feel the pain and it’s holding me back from being happy.

I had a friend that stayed over once in awhile until Matt kicked her. She never wrote back to me after that.

Alissa, 1990

Isolation…being completely alone…emptiness…a cold barren winter devoid of color….loneliness…the crying of the wind…sadness…the darkest days of the year.

Isolation…for three years Matt had a school teacher come out to the house to educate him. He was deemed too violent to attend school. My mom took a leave of absence from work and pulled my younger brothers and I out of school as well. Sometimes we only left the house once a week to go to church. I spent a lot of time alone in my room writing in my journals.

Emptiness…Robbed of joy and childhood magic…My dad couldn’t handle the stress…he was there physically, but he was gone emotionally…I had to step up to the plate…the firstborn…the caregiver…the fixer…weighed down with adult worries…numb to pain, numb to joy…Pushing all feelings away…left empty inside…Not able to feel anything.

Loneliness…Friendships were severed. When friends came over, it was a disaster. We only had people over once or twice a year and it usually did not go well. My mom and my cats were my best friends. I had more pen pals than actual friends, it was safer…the friends we had went away and never came back…

Sadness…My mother, the kindest and most compassionate person that you would ever meet. I think that it truly hurt others when they had to kick us out of public places because of Matt’s violence…he hurt someone…I have to kick you out…you are welcome back again, but give it some time…Those were the years when I saw my mother’s tears more than I heard her laughter.

Isolation…being completely alone…emptiness…a cold barren winter devoid of color….loneliness…the crying of the wind…sadness…the darkest days of the year.

I spent three teenage years completely alone..Those were the darkest years of my life. Years that I don’t talk about.

 

Prom…the good, the bad, and the not so ugly.

There was this 17 year old girl (Ali) that got the part of the floozy that I wanted in the musical. She pulled it off a lot better than I thought she would as someone rather inexperienced in life and love. She has the body that many would envy with long gazelle like legs and curves in all of the right places. She also has a kind and compassionate heart…truly beautiful inside and out. She almost seemed to feel bad that I didn’t get her part although it wasn’t a big deal.

After the show one night, Ali told me that she was missing her junior prom. She bought a dress, had a date, and couldn’t go because it was the same night as the show.

She spoke with regret…lamenting a missed prom…while at a theater full of beautiful costumes, wigs, and makeup…including a stage with music, lighting, and speakers. It seemed like a no brainer to me…I decided to throw Ali a prom. We picked out lovely dresses and had a dance party with most of the people that were lingering about. Almost everyone got into glamorous costumes and danced the night away.

Afterwards, people started treating me like I was Mother Theresa. I became (gulp) almost popular. People told me how wonderful I was for throwing Ali a prom. Ali was even crowned the prom queen. I really felt uncomfortable with all of the praise. Maybe because I had more fun at her prom then I ever did at mine.

I missed my first two high school proms because I was home schooled. My autistic brother was too violent to be in school, so we had a retired school teacher come out to our house to educate him. My mom pulled us all out of school during this time. We weren’t treated well at school because Matt was the first violent autistic child in the school district. Apparently, it was the family’s fault he acted the way he did. For 3 years, I was not in school.

When I was a sophomore, there was a boy I wanted to go to prom with. I finally got up enough courage to call his house. He wasn’t home, so I ended up talking to his mother under the guise of some church fundraiser we were having at the time. I don’t think he ever knew I called for him. I didn’t have a prom date and didn’t attend the school.

So no luck for prom!

I went to my junior prom with my boyfriend at the time, Timmy. My mom picked out a dress for me and brought it home one day. It was ugly and I hated it. But I wore it anyway. We got our pictures taken at Timmy’s house. His step-dad grabbed my ass. Timmy was angry when I told him. At prom, another girl told me that someone wore the same dress that I was wearing the previous year. She also said that Timmy was planning on breaking up with me after prom.

After prom, Timmy and I got into a huge fight on our way to an after prom party about him wanting to break up with me. We sat outside the party in his car on the road. It was pouring. Several people stopped asking if we had car trouble, but the screaming and tears suggested otherwise.

Not a good prom.

Then senior prom came along…my long term boyfriend Bobby and I just broke up. I was heartbroken…so I started dating Bobby’s next door neighbor and friend. Nothing exciting happened beyond a few hickeys on my neck to get back at Bobby. Boy did that show him! Lol…But, I was planning on going to prom with Bobby’s friend. He didn’t have his license. When I went to pick him up, his sister said that he left for the weekend to go on a fishing trip with his dad.

So, I went to prom alone in a cheap thrift store dress with hickeys on my neck. At prom, a low status guy asked me out… I thought to myself…Sure, why not?? I didn’t like the guy, but I was feeling miserable and alone at the time. The other kids found out about it and laughed. Someone had the DJ announce ‘congrats Alissa and Donny for making a love connection’. We broke up the next day.

Not a good prom.

So this past weekend…I threw Ali a junior prom…Maybe I feel guilty for having so much fun. It was like I was redoing my prom all over again.

Sure, it was a nice thing to do…but I am not a saint for doing it.

I just wanted her to have happy memories. If nothing else, she will have a lot of interesting stories..

It was a great prom!

The darkest days of the darkest years

Isn’t it funny that Christmas comes during the darkest days of the year, the time of the year that we so desperately seek out light. That was all that I wanted those darkest years, to be able to see a ray of light, a glimmer of hope. But all glimmer of light was gone. I had lost my hope. I fell into a time of deep despair. I was angry with God.

Those are the years that I don’t talk about to even the closest of new friends. Nothing. Nada. Zip. Zero. The darkest years happened when I was in middle school. My autistic brother Matt became increasingly violent. So much so that he was not allowed to go to school with other kids. He had to have a teacher come out to our house. When Matt got “kicked out” of school, my mom took my brothers and I out of school too. My parents had us 4 children in less than 5 years, with me being the oldest. I was homeschooled between 8th and 10th grade. While my classmates attended prom and homecoming, I was at home in isolation.

Through the darkest years, my dad totally checked out emotionally and became very depressed. My mom became desperate to find a cure for autism, taking Matt out of state to a hospital that did extreme allergy testing. She thought that if he avoided certain foods and allergens, it would curb some of his violent outbursts. When they came back everything changed for us.

Matt was allergic to everything. My parents got rid of their wood furnace and put purifiers throughout the house. My mom took down her bedroom curtains because they had formaldehyde in them. She used old sheets and blankets as curtains. If the local farmers were spraying their fields with pesticides, she would call them screaming if she didn’t get notified first and Matt would have to wear his charcoal mask. If they did call her to notify us, we had to pack up our car within a half an hour and head up north for a couple of days until things gassed out or it rained. My parents had to park their cars at the bottom of the driveway so exhaust fumes would not come in the house. If my dad snow blowed the driveway, he was not allowed into the house with his snow gear on and had to shower immediately. I wasn’t allowed to wear perfume, hairspray, or nail polish. Those were just a few of the changes that were made in attempts to control Matt’s violent behavior.

It was very hard that year at Christmas. My mom said that Matt was allergic to Christmas trees, even the fake ones. It was at that time that we no longer had a Christmas tree in the house. No decorations. No lights. Nothing. Even my grandma was instructed not to put up a Christmas tree. Instead she put little bows on the wall in the shape of a Christmas tree. It was horrible. Matt had meltdown, after meltdown, after meltdown. Day after day he attacked me. He kicked me, punched me, scratched me, hit me. Ironically, taking away all of the things away from Matt (and the rest of us) did nothing to tame his aggression. It seemed to hurt us more than it helped us.

But how could I be angry at my mom for trying everything she could think of trying? How could I be mad at my brother who wasn’t bright enough to read or write? I fell deeper and deeper into despair like a small flower buried under the cold deep snow.