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.

 

Not a special Olympics type of story

For many the holiday season triggers memories of joy and happiness. For me, this time of year triggers some sort of post traumatic stress response. I realize that now. Wow, and it only took me 19 years to figure it out after I earned a degree in psychology.

I feel like I am back to normal now, whatever that is..

For the first time in my life, I was able to write down exactly how I felt while I was going through it. It wasn’t easy to relate. I think I have some sort of post traumatic stress response to certain triggers. It sounds absolutely crazy, I know. Most of the time triggers elicit a response of depression for a day or two at most.

I think this happens more often than I realize, but not quite as severe.

After I left my childhood home, I fell into a deep depression that lasted for several years. I also picked up anger and anxiety to put in my baggage along the way.

I don’t blame anyone for what happened.

I remember starting to feel angry last week at Thanksgiving when my mom was giving me a hard time about taking Prilosec for my acid reflux. She really wants me to get allergy testing and offered to pay for it. I have been reluctant. It’s not that I disagree, it triggered memories of growing up.

Matt was supposedly allergic to everything. We couldn’t even have cars parked in the garage because of exhaust fumes. We couldn’t have curtains because of the formaldehyde. For awhile we weren’t allowed to use toothpaste.

Personally, I think that my mother’s response was too extreme. She would have extreme anxiety if Matt was exposed to any allergens. She would scream at my dad if he came in the house smelling like exhaust fumes. She called the nearby farmers and screamed at them if they sprayed their fields without calling her first. She even called the county and yelled at them when they came by spraying the ditches.

My mom seemed to think that controlling Matt’s environment would stop him from being violently autistic. But nothing seemed to stop his violence towards himself and others, namely me.

I think that my mother has and always had good intentions. She is worried that I will die from kidney failure, a supposed side effect from the Prilosec. I will have to tell her that my daughter Angel has already offered me her kidney when mine fails.

My mom was always there for me when I was a kid. She was the one who helped me pick up the pieces of my broken mind after Matt was violent. She also helped my brother Mark out when he experienced a similar response to mine. The task she was given was not easy to do.

I don’t blame my dad, despite his cruelty. He was as much of a victim as the rest of us.

I don’t even blame Matt. If you met Matt today, you wouldn’t believe a word I have told you. He is now docile. By some miracle, he grew out of his violence.

The last time that he hurt someone was 14 years ago. He attacked Angel on her 4th birthday. After he attacked Angel, it was a time of great emotional turmoil for me. I cut Matt out of my life completely for a few years. He wasn’t allowed around my children.

His psychiatrist threatened to have him committed to a place for the violently mentally ill. It was one thing when a child was hurting other children, but it was entirely different when a grown man was attacking children. In response to this, Matt was home bound once again and kept out of public where he could hurt someone and get committed.

I was already feeling edgy about my mom pushing the allergy testing on Thursday. Then my visit with my dying mother-in-law on Saturday made me very anxious. Then the sadness over Angel going back to college and the trigger of the Christmas tree was enough to set me off into this deep dark spiral downward.

I feel horrible about talking to you about this. I wish I had a great special Olympics type special needs sibling story to tell you. I feel tremendous guilt that I don’t.

I haven’t met anyone else who has had a similar experience to mine. If you are out there somewhere, I want to tell you that there is hope. This was the only thing that kept me alive as a teenager and young adult. I prayed fervently and had hope that someday there would be a better life for me where I could experience joy.

I firmly believe that you cannot fully experience joy without experiencing sorrow. I have found that joy in abundance. I experience life at a much deeper level than I think I would have if my life was easy breezy. No small talk here, just the blatant honest truth. There is value in being able to honestly share the sorrow that I experienced this week. I need to accept what I have been through and the emotions that accompany it.

There is hope! If opening myself up and allowing myself to be vulnerable helps just one person hold on for another day, it would be worth it. You are not alone! There is hope…

Trust that tomorrow will be a better day.