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.

 

Luke’s visit, part 5

I don’t understand why he did the things he did. I don’t like to think about it, much less write about it. It makes me feel incredibly sad to tell you all of these things.

We didn’t travel much as kids. The only place we ever went to was the family cabin up north. I can’t even remember one family meal at a restaurant. Matt’s violent and disruptive behaviors made it nearly impossible to be welcomed anywhere.

I didn’t like the weeds in the water at the lake. Oftentimes, we would walk to our neighbor’s cabin nearby to swim. They raked by their dock giving them a sandy beach. They knew my parents and were okay with it, although I never remembered asking and they always glared at us.

There was that one time that my brothers and I thought it would be a great idea to throw the neighbor’s decorative rocks off the end of their dock. They were so angry. We were too little to get them out of the water at the end of the dock, the water was over our heads. My mom didn’t swim.

After that unfortunate incident when my brother almost drowned, we were always watched more closely in the water. It was my dad’s idea for my mom to put me in charge as a 6 year old of my 3 younger brothers in the water. They thought I would holler if something went wrong, but instead I froze when Luke went under.

After that, my mom would sit on the neighbor’s dock in her lawn chair to watch us swim. Sometimes if my mom wasn’t able to be there, she would send my dad. He was never really happy about that.

We didn’t have fun playing in the water with dad. He would grab our ankles while we swam under water and yank us back making us choke, sputter, and gasp water. It was all a game, like tag, you see. He seemed to think it was fun.

He thought it was terribly humorous that I was afraid of weeds. He grabbed my little body and planted my feet far away from the sand into the weeds. The few minutes he forced me to stand there seemed like hours. I was so terrified feeling the slimy weeds and what I imagined slithered underneath. Even to this day, I rarely like my feet to be uncovered.

I cried in terror and when he finally let go, I ran as fast as I could through the weeds to shore. All the while, he called me names and threw mucky weeds, a dead fish, and sticks at me. Then he swam back to our cabin through the weeds. He said that I was such a baby for being afraid.

But I still loved the water. I wanted to learn how to swim really good. My mom gave us basic swim lessons so we didn’t drown but said I couldn’t take the advanced class because they had doctor bills to pay for Matt.

Last summer I swam across the lake up north. I swam right through the weeds even though I was scared. I even competed in a Half Ironman. But I always remained a beginner swimmer.

My brother Luke’s daughters are really good swimmers and are on the swim team. My oldest niece, who is just 10, competed in her first triathlon this year. Luke set up a mock triathlon course for his girls up north. At least I am glad that he is the father that our dad never was. They have been given so many opportunities. They don’t have to grow up being afraid.

 

Luke’s visit, part 4

When we were young, my dad was a very cruel man. He is not like that anymore.

Luke said what terrified him the most was the train. It was one of his earliest memories. He remembers dad inching closer and closer to the tracks while the train was passing. He hid crying in the back window of the car as my dad and brother Mark laughed. He said I wasn’t there.

I don’t remember this being an isolated incident. I was there. I almost forgot about this. The train did not terrify me. I liked to wave at the man in the caboose when mom took us on walks. As kids, we lived near the railroad tracks. I found the sound of the train’s whistle to be rather soothing at night. We even saw a train derail in our lifetime, but not on those tracks.

I remember my dad doing other things like crossing the tracks right before the train passed. But I think he found much more satisfaction in waiting for the train to pass. He inched closer and closer until the front of the car seemed to kiss the side of the train car.

If you get really close to a train, it is squeaky and loud. The cars teeter and rock back and forth making an awful grating noise. Sparks fly. It seems like it could come off the tracks at any moment and destroy the car in a big ball of fire. My dad took the opportunity to scare Luke or any of us whenever he had the chance. I remember this happening several times with the train. I was there, but Luke does not remember that.

We couldn’t comfort our terrified sibling otherwise it would probably be our turn next. Compassion and empathy were not rewarded. In fact, they were more of a weakness. Laughter was probably the safest response. If you laughed or acted like it didn’t scare you, he wouldn’t do that to you. I often responded with no response. But Luke was terrified and I think he was too little to hide it.

My dad did other things to scare us in the car. He drove fast and laughed at us if we tried to put on our seat belts. He drove fast over hills. He would taunt us by saying that he had no idea what could be waiting on the other side of the hill. I was big enough to see out of the window, maybe they weren’t. There could be a family walking on the other side of the hill….a dog…another car and he wouldn’t be able to stop from hitting whatever could be on the other side. Sometimes he would drive up hills on the wrong side of the road.

I’ve had nightmares about him driving fast or going up steep hills not knowing what could be on the other side. I think it was also the root of my struggles with a fear of driving, especially hills. I was afraid of hurting someone. I was afraid of not having control over that. I couldn’t see what was ahead of me.

Today I am obsessed with conquering my fears. If the fear wins, so does my dad.

I built a big wall around myself. I have a thick shell. But maybe somewhere inside is that little girl who is kind and caring.

I don’t think that my mom even knew about the things our dad did when she wasn’t around.

 

Luke’s visit, part 2

I suppose since you have a big house now that you will be hosting Christmas this year.

It wasn’t the first time I heard this comment…

I told Luke that I didn’t really like an aunt and uncle of ours.

Why?

Because of the time that they came over for supper when we were kids.

What about it?

They had the house with the piano. They wanted us to come live with them if mom and dad left us forever. That evening while we were eating, Matt hurt our aunt. It wasn’t unusual for Matt to hurt someone.  It was our aunt who was acting strange. She locked herself in the car crying hysterically. She could not be comforted. I’ve never seen her so upset before or since.

Suppose that our aunt was attacked and Matt triggered her memory of it.

Aunt left and didn’t come back. They said that they didn’t want us to come live with them in their house with the piano anymore.

Who told you that?

Mom. She cried and said that no one cared. She said things would be different if her mom was still living.

How old were you?

I don’t know, maybe 8 or 9.

You were too young, why would she tell you that you were unwanted?

Something strange happened in the course of our conversation. For the first time I was able to see the event through adult eyes.

I was able to let go of the rejection of 30+ years. My aunt has always been kind to me, but I didn’t trust her since that night. Other family members cared. They were busy living their own lives. Some were only a few years older than me. They saw what was happening but didn’t know what to do about it. Some lived far away. The ones that were near did help.

My mom just needed more help than anyone could reasonably provide.

So I became the helper. I became the adult.

I have forgiven my family.

Someday I will forgive my mother too for my lost childhood and for giving me this heavy weight to carry. I think it is time to start unpacking my baggage.

 

Grandma’s rocking chair

My eye hurts really bad. It feels like it is on fire as the tears roll down my face.

Matt is screaming again. He poked me in the eye on purpose. We are both screaming now.

I told Grandma that I hate Matt.

She didn’t tell me that I should feel lucky that I am normal. Nor did she say that I shouldn’t be upset since Matt can’t help it. She didn’t tell me that Matt has it harder either. Those were the things that Mommy and Aunt Grace said.

She didn’t push me away to comfort Matt.

Instead, Grandma picked me up and rocked me in her gentle arms. She sang me beautiful songs until my tears dried and I fell asleep.

Back to the past

Over Thanksgiving we played the game Loaded Questions. It is a great group get to know each other kind of game. Perfect Christmas gift idea. You’re welcome!

The main object of the game is to ask a question in a category and try to guess who wrote what response. Every player gets a chance to be a judge.

When I was a judge, I asked the question…If you could live in a past time period, when would it be?? Paul said it was taking him awhile to write a response because he was having a hard time spelling his answer..

Here were the answers:

1960’s

1970’s

1970’s

1980’s

1980’s

The Renaissance period (obviously Paul’s answer)

An hour ago so I wouldn’t have to play this lame game (obviously my son)

I found the answers interesting. My mom and Darryl wanted to go back to their teenage/young adult years…but what I really found interesting was that 3 out of 4 teens wanted to live in the time period that I grew up in…I was shocked..

But, but, but, but…there was no internet back then.

The teens said that they didn’t care.

I asked my daughter Angel about it later…Why did you pick that you wanted to live in the time I grew up in??

She had two answers. First, everything today is fake. She said that she knows of an ultra thin uTuber that spent hours posing with an ice cream cone that she never ate. She said that although she is a normal weight that it made her feel fat. Also, people only post good things about their life…which makes her feel like her life is boring or that she is not happy enough. (At this point, I should’ve shared with her about all of the personal posts here on WP but I missed the opportunity to tell her that other people’s lives do suck sometimes).

While we were in conversation, she took my picture with her a couple of times for snapchat. People were sending selfies back with little comments on it. She said I should join. Why would I want to send pictures of myself back and forth to people all day?? I don’t understand.

Second, my daughter said that all of her social contacts are on her phone. I guess that means instead of hanging out with friends in person, they send pictures back and forth all day or play games. She said that putting her phone away for a short time would mean that her social interaction is gone. She talked about a challenge at college that included giving up a phone for one day. Teens become a slave to their phones. Funny thing is…I never see them use their phone as a phone.

This is what it was like growing up in the 80’s…

 

The weekends always held a sense of adventure. After watching the Saturday morning cartoons, the neighborhood kids would ride around on bikes without helmets. Sometimes our chains would fall off or we would fall off our bike miles from home. We had to work together as a team to figure out how to fix problems. No one ever knew where we were.

I really loved the monthly trips into town to go to the library. Sometimes I could read a book a day. I would drool over the new releases that could only be rented for a few days. I couldn’t wait until that book was out on the shelves. I always checked the return pile for coveted books. I loved the silence and the smell of musty old books. Sadly, I haven’t been to a library in years.

It was exciting to hear a new song on the radio. I would listen for hours just to get the chance to pop a cassette tape in and record the song. Of course, I rarely got the whole song on tape. I had a weekly date with America’s Top 40. The weekly countdown was big excitement.

In the evenings, we would go on walks to visit with our grandparents or great aunt and uncle. I think I miss this the most…just walking in as if expected…unannounced visits. People just would stop in and talk for hours. People would drop whatever they were doing and listen. There was never a ‘let me check my schedule’.

We loved playing outside making forts out of wood or in the snow. We were never in a hurry. I loved going to the post office to see if I got a letter in the mail. We would pretend to ‘smoke’ candy cigarettes. We played in the sprinkler and drank water out of the hose. We ate raw cookie dough and ate homemade meals every night. We only had our picture taken on special events. I loved the big poofy hair and the big boxy cars.

We had a computer at home that I learned how to make my name scroll across the screen. It was exciting! Sometimes I would even change the color of my name. I loved to play Donkey Kong. We had an Atari and a VCR. I had a Michael Jackson record player from when he was still black. I spent hours playing with Barbie and Ken. I could spend hours watching a slinky go down the steps. I loved the game of Life. We never heard bad world news, unless things were really bad the adults didn’t tell us.

The strange thing is, although you might say that there was nothing to do, I can’t remember ever being bored.

I would challenge the young folks to spend a weekend without their phone to see what kind of adventures are out there..

What were your favorite memories growing up in pre internet era??

 

 

 

 

Autism’s sibling, journal 3 part 1

Now I am ready to tell you about myself, my family, and you will understand everything..

Everyday Matt would be violent. He would bite me and claw up my arms. I have the scars to prove it, although they faded a little because he’s a little better. But it was awful. Everyday he would be uncontrollable. It was always me he hit.

Once he had this thing about men with beards. He would scream and be awful. Once Matt, mom, and I went grocery shopping and Matt saw a guy with a beard. He got really mad. When mom was checking out, she had to hold him down on the floor because he could hurt someone. 

Or how about the time when we had to move the knives because he took one out and threatened to stab my eyes out.

Or when my mom got a bloody lip because he threw his head back on her. She started crying and it really upset me when I heard her say, “What kid would do this to his mother?”.

The stress was unbearable.

I couldn’t have any friends over because they might have on a fragrance and he might react. So you could say that I never really had many friends over because he would hurt them or me. I couldn’t wear any hair spray or anything with a fragrance.

Other times he would hurt small kids.

We had to do different things. We had to get unfragranced soap, shampoo, deodorant, and laundry soap. We had to close the windows when there was an east wind because the auto exhaust would bother him.

He couldn’t leave the house. He had to eat special foods. We never had anyone over because Matt might hurt them.

He can’t read and when he was younger, he couldn’t talk. He would do weird things like grind his teeth and hit his head. He broke about 5 stereos, one of mine, one of mom’s, and the rest were his.

He couldn’t go swimming because of the chlorine. He would be wild for two or three days in a row. He threatened to run away.

Alissa, 1990

Over time, I have forgotten the magnitude of the stories written by a younger me.

To be honest, something has been scratching at my mind since I stirred up my demons.

My last post was on locker rooms of all things..Talking about locker rooms seemed to bother me more than it should have..Memories swirl through my mind. My mom taking a too old Matt into the girls locker room? There weren’t options back then like there are now. A too old screaming autistic boy in the ladies locker room would have been memorable back then, but I don’t remember more than a flicker.

There are whispers quietly echoing through my mind, but I can’t make out the words.

I am nervous as I type.

Do I really want to remember?

Suppertime sadness

The tool box clanks on the floor…It’s 6 PM…Dad gets home from work…Supper is on the table…Matt and Luke are tied to their chairs with my mom’s apron…otherwise they don’t stay…

Dad bangs his fist on the table…This dog shit you call supper…He roars as he walks away…The TV is turned on in the next room…laughter on the screen…laughter from my dad…my mom cries…The boys struggle against their restraints…

My stomach hurts…I don’t want to eat…But I have to stay until all of my food is gone..

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.

 

This, whatever it is..

Last night after writing, I felt restless.

I had an inability to focus and no desire to do so.

I left home.

I walked out the door and drove off without telling anyone I was going.

I drove aimlessly for an hour. I am drawn to places where I once was happy, but are lost to me now. I drive to the house I used to live in when we were first married, to my grandma’s house, or to the sailing club devoid of boats for the winter. Last night I drove by Lisa’s old house. I glanced as I passed and saw children playing inside. I drove along our old running route. Then I drove aimlessly after that.

I had a conversation with God while I drove. Why weren’t you there for us back then God? Why weren’t you there for me? Where are you now? But I didn’t receive an answer. I entertained the thought that he was never there. Maybe there is no God. I don’t know if I believe or trust anymore. My faith is held intact by a small string.

Paul was worried when I got back home. He forced me to talk to him when I would rather stare off into space, be alone, or attack him so he would stay away. I felt flooded with despair. It threatened to drown me. What is my purpose? Why am I even here?

The sadness was relentless, but I fell into an exhausted sleep only to awake hours later from a horrifying nightmare. I dreamed that I went back in time. There was a horrific lightening storm like one I never saw before. The lightening burned holes in the ground and tried to pull me into it. I had no way to protect anyone. My kids were in it while they were younger, I found my little brothers, and relatives that are long gone now. I couldn’t protect anyone and had trouble finding them.

I awoke in absolute terror. I wrapped myself tightly in my blankets to try to feel safe. But the feelings of terror surrounded me for another half an hour. I got up for awhile, unable to sleep. Then I fell back into a restless sleep for the rest of the night.

I awoke feeling nervous and afraid, like an intruder was in the house. I felt jumpy. I know the feelings weren’t true. I was alone, and no one was there..

The memories keep rushing back. Images ricochet through my mind..Sounds echo through my head… I hear the laughter of children on the playground… I hear them mocking Matt.. I watch as Matt kicks the girl at the roller rink.. I hear her screams and her dad’s angry yell.. I walk through the playground with Matt and his therapist trying to see if the laughter of the children will trigger a meltdown to try to help him somehow stop..I hear the cats cry..I hear a music box and Aunt Grace talking..I hear the laughter of Uncle Harold..

The images and sounds haunt my mind. Whispers of memory. Distorted, out of focus, yet somehow real, remembered faintly.

Then I realized that I was back home. I am feeling the way that I felt back then. The anger, the depression, the fear, the insomnia, the nightmares..

Paul said that maybe I should take some time off to rest. But I am going to work…I am following my regular exercise routine…and I am grasping onto my little string of faith..

If I let go, I will surely drown…