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..

On a day like today

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It happened on a cold December day like today.

It happened to a woman my age who had children the ages of some of my children.

I wonder what it would be like..to find out that I was pregnant unexpectedly. She was worried that her husband would be upset when she suspected. She told my mother that.

Her oldest child was already married and out of the house. Her youngest child was 8.

For a couple of months, her oldest child and her were pregnant at the same time.

It was in December many decades ago that her last child, a healthy baby girl was born.

My mom who was the second oldest, called her older sister the day after the baby was born.

“She’s dead”, my mom said. “The baby?”, asked her sister. “No, mom”.

Many decades, years, minutes, and seconds have passed since that cold December day. The oldest daughter has already passed away. Most of my aunts and uncles are reaching retirement age. But I still see them long for the mother that left them too soon. When they get together they still read the old letters she wrote. Tales of what was made for dinner the evening before. Stories about nothing important that makes the siblings laugh and cry.

I feel very thankful that I have had my mother in my life so long.

Paul and I are now approaching the loss of our first parent. It really forces us to face death. I thought about it a lot over the trip to Door County last month with my mother and a few of her siblings, especially when they spoke of the loss of their mother. (The picture above is of my mom and her sister).

My mother’s youngest brother, the 8 year old boy at the time of his mother’s death, said in Door County that some of his favorite movies today are the ones that his mother took him to see right before she died. It was really touching.

My oldest uncle was 16 when his mom passed away. I have a 16 year old son. He would be mortified if I told him I was pregnant. It is the age that most teenage boys don’t want anything to do with their mother. I suspect that my uncle felt the same way and felt guilty for wanting to separate from his mother especially after she passed away unexpectedly. He is currently going through a nasty divorce from a woman that I knew for my whole life to be my aunt. At this hard time, he yearns for his mother so much that he has been visiting a medium just to try to talk to her again. It is terribly sad.

My mother said to me many times growing up that she wished her mother was there. She knew that her mother would have helped her raise an autistic child.

I never met my grandma. I have only seen the impact she has had on her children. From this, I know that she was a good person.

I am so blessed to have my mother in my life for this long..

A blue Christmas…

     

Last night I decorated my new real blue Christmas tree…alone.

I felt such a loss after Angel left to go back to college. Year after year, we decorated the Christmas tree together. I really missed having her here this year. I didn’t tell her that though. There are so many kids dropping out to be closer to home. We both know she is right where she needs to be.

My other two children were not interested in decorating the tree with me. Just this last weekend Arabella said that she didn’t think her teenage self would like me very much. Bayley was over and Alex wanted to spend time with her. The last thing I wanted was to force the kids to spend time with me. I want them to want to.

I wanted for just a second to put them into my world growing up. I wanted them to realize how important this tradition is to me. But I protect them from all of that.

The holidays sometimes does crazy things to my head. 

The next thing I know, I am back home. Mom and I are baking cookies for Santa. There is a tree with glimmering lights. There were Cabbage Patch dolls hidden in wrapping paper under the tree. 

Then just like that, everything I had was gone.

Mom said that Matt couldn’t tolerate Christmas trees, real or fake. Everything stopped. We no longer had Christmas trees in the house. We no longer put out cookies for Santa. We no longer decorated with lights or candles. That was no longer allowed. What used to be magical and fun turned cold and desolate. It became a season of despair for me. 

Thankfully, my grandma always had us over on Christmas Day. I never cared that her trees were less than perfect. She always cut her own tree from her backyard. I was happy there. Except for the year that my mom told her that she could no longer have a tree because Matt was allergic. My grandma decorated the wall with bows that year. I was so angry.

Last night I put my head in my hands and cried. A part of me will forever be broken.

I wanted my kids to understand what having a tree means to me because I never had it. I did have it at one time, but it was taken away. I wonder if my younger brothers even remember a time when we had a Christmas tree in the house. Perhaps I will ask them. Maybe it is better if they don’t remember.

Last night I felt so much anger and despair. If my mom were to call, I wouldn’t answer the phone. It is not fair to her to be angry about something that happened 30 years ago. It’s not her fault that Matt is autistic. The whole situation was unfair to all involved.

I want to help other special needs families learn from my experiences, but I feel so much rage. It hurts to reach out. My mind goes absolutely haywire this time of year with anger, depression, and anxiety. I can’t seem to control it. I can’t seem to escape the memories. So many years have past now, but it still hurts when I pick at the scars.

Why did you take everything away from me? Did you think that taking our Christmas traditions away from us would make Matt any less autistic? It was not like he broke out in hives and had trouble breathing. I needed this to help get through the dark days. I needed some light. But my needs got ignored. The funny thing is, Matt wasn’t any more or less violent without the tree. It didn’t matter either way to him, but it did to the rest of us

I’m sorry, I didn’t intend for my post to be this way. I was going to post a picture of my lovely blue tree. This post was going to be light and fluffy like the snow we don’t have on the ground outside. I didn’t think that I would respond this way. This time I didn’t brush the feelings away. I let myself grieve. Sometimes I wish my kids would understand that the things they take for granted as normal were never normal for me. 

I am not usually an emotional person. I am usually cool, calm, and detached from feelings. I don’t want to live in that cold emotionless void anymore. I want to feel now even if it hurts. I am stronger now, strong enough to handle this.

Thanks for listening to me. It really helps me feel better. 

Post party impression

Did everyone survive Thanksgiving? I made it through…

All of the hours spent cleaning, cooking, and doing dishes…then…BOOM….the whole shebang is over just like that. I feel so wiped out. Maybe it’s just the tryptophan from the turkey..

The holiday went well. We didn’t discuss politics, although oddly enough, it is something we all agree upon. 

Practically everyone who came over had special diets. My daughter Angel is a vegetarian now. She called me a couple of days ago from college saying that she needed to go to the dentist while she was home. She said that her gums were streaked, painful, and bleeding. The college nurse said that she needed a new toothbrush. Being the worry wart mom I am, I figured out she had a B12 deficiency from being a vegetarian. 

After she started taking B12, her symptoms went away. My dad saw her take the B12 and asked her if she was taking birth control pills. Some things never change. Not funny, dad, not funny…

My son Alex doesn’t eat vegetables. Nothing green ever touches his lips. 

My mom has new allergies. She can’t have black pepper, parsley, or cinnamon. Do you think I am kidding? I did make a special cinnamon free cherry pie for her, but I heard it wasn’t as good as the one with cinnamon. 

My autistic brother Matt is gluten and dairy free. He also has allergies to all foods that start with the letters B and S or so it seems. The list changes rather often, so I never know what to do and feel stupid for asking.

Alex brought his girlfriend Bayley over for Thanksgiving for the first time. I wondered if Alex warned her about my family. Did he tell her of grandpa’s crude jokes? Or Matt’s propensity to fart and belch loudly while at the table? This time it seemed like Matt ate beans for a week straight before his visit. Then he urinated on the bathroom floor. All of this is completely normal, but rather uncomfortable for a first time visitor.

I was thankful that my mom brought food and helped me dry dishes. She did drive me a little batty when she talked about how my brother Luke is so much healthier than me. Did you know that Luke stopped eating out of Teflon pans? He is practically a vegan now. When he does eat meat, it is never red and is always cage free. He only eats whole foods that are organic. He has the cholesterol level of a 14 year old. Maybe if I was more like Luke, I wouldn’t need to take Prilosec twice a day because that causes kidney damage. How would I like dialysis? I wouldn’t need dialysis someday if I am more like Luke. My gosh, what if I was a couch potato chip eating smoker? 

Maybe I should just give Luke all of my medals…

Did you know that running is bad for me as well?? My mom said that my varicose veins will get worse. It is just not healthy. My mother-in-law also said that running was bad. Just look what happened to her brother. The running killed him. He ran 5 miles every day and smoked 2 packs of cigarettes. Must have been the running!

Ahh, I try to be as healthy as I can be and let the rest go. I hate to say it, but none of us will get out of here alive. In my lifetime, I have seen healthy people get cancer and unhealthy people live a long life in good health. I am not going to make myself completely miserable by worrying about the damn Teflon. People already give me crap about running marathons. My neighbor even said that running wasn’t healthy as I ran by his house one day. He hollered out to me while he was outside smoking a cigarette. 

I just don’t get it! How can people think running is unhealthy??  

Let the holiday season begin!  

24. Family dynamics

Day 24: Describe your family dynamic of your childhood vs. your family dynamic now.

Then:

My parents were married back then and still are now, however there was always a lot of conflict between them. My mom was the breadwinner and the one who did a great majority of the household chores.

I was the firstborn. I was overly responsible, a caregiver, a confidante of my mother, and a problem solver. I felt as if I was always an adult and never a child. I was very serious, mature, moody, and intense. I strongly sided with my mother and found myself playing the part of judge picking sides with either of my youngest two brothers.

The world revolved around my autistic brother Matt. The family centered around his care, wants, and needs. If he wanted to go somewhere, we went. If he decided to stay home, we would stay. Everything was about him, the rest of us took the back burner.

Mark was the invisible child. He didn’t rock the boat. He was quiet, serious, honest, stoic, and hard working. He received attention for his work ethic, otherwise he was totally forgotten. He didn’t seem to have feelings, except the anger and depression that manifested in his teen years. He strongly sided with my dad and it was his job to convince my mom to stay when she wanted to leave.

Luke was the clown and instigator. He demanded attention and refused to let Matt have it all. He did wild and crazy things without consequence because my parents were too worn out to handle it. He rocked the boat every opportunity that he could. He strongly sided with my mother and against Mark and my dad.

The family dynamic was very dysfunctional. We did not work together as a team. The environment was constantly stressful.

Now:

Fast forward things a couple of years….and ‘What’s Eating Gilbert Grape’ falls in love with ‘Good Will Hunting’. Or if you aren’t familiar with those old movies…the little girl who thought that dysfunction was normal met the little boy without a daddy. We fell in love and got married.. We had no idea what normal or healthy was, but decided to work towards it anyway.

Not long after…we had 3 children..

Our firstborn Angel is our beauty both inside and out. She is overly responsible, honest, and extremely optimistic with a winning personality too. She is a big time people person and would make a great supervisor.

Our middle child, Alex, is the one that rocks the boat. He is honest to a fault. He is smart with a high emotional intelligence. He is not a people person, but can read people well. Sometimes he likes to cut corners, but is willing to work hard if he needs to.

Our youngest, Arabella, is an intellectual. She is very book smart, but can’t seem to read people. She likes people, but also likes to argue. Other than that, she is very easy going.

As a family, I think our dynamics are very healthy. Sure, sometimes there is squabbling. But compared to how Paul and I grew up, our kids have it made.

I guess we are pretty normal…Whatever that is..

 

20. Three significant childhood memories

Day 20: Describe 3 significant memories from your childhood

1. My first childhood memory that I can remember happened when I was about 4 years old. This was right around the time that my parents noticed that there was something wrong with Matt. Matt stopped talking. He threw wild temper tantrums during the day. He screamed from night terrors at night. Friends of my parents said that they needed to have stronger discipline. They were told it was their fault that something wasn’t right. What they needed to do was beat the autism out of Matt.

That is what happened that day. My dad was in the kitchen with Matt trying to beat the autism out of him. My mom held my younger brother Mark and I back in another room to keep us away. I was afraid but I looked anyway. What I remember most was the haunting screams of adult and child. Matt kicking and flailing with my dad standing over him. The constant ping, ping, ping and rattle of the cupboard doors being hit during the scuffle.

2. The 2nd most significant memory happened when I was 6. It was a warm day in May when my mom left me alone on the lake dock to watch my 3 younger brothers play in the water. I was not to get my clothes wet. I was supposed to call out if there was a problem. Matt was flapping his hands together near the shore, oblivious to everyone else. Mark and Luke kept wading into the water deeper and deeper.

Mark exclaimed excitedly in his shrill little boy voice that Luke was swimming. But Luke was not swimming, he was drowning. Little Luke that just turned 2 was drowning in the lake and there was nothing that I could do. I tried to scream, but I couldn’t hear my voice. I wanted to jump in but wasn’t supposed to get wet. I didn’t know what to do, so I didn’t do anything. I froze with one leg perched over the water. My mom came out to check on us and saved Luke. It took me a long time to forgive myself for doing nothing, but I was only 6.

3. The 3rd significant memory happened when I was around 12. It was the day the fish tank broke. Luke came running through the front door that we never use and the door handle went right through the fish tank. The tank cracked spilling water onto the floor that seeped down into the basement where my dad was working. This made my dad angry. I was afraid of touching the fish, but I had to try to save them. I reached into the broken tank to grab a fish. It was squirmy and slimy. I screamed and pulled out my arm cutting it on the jagged glass. As the blood ran down my arm, my dad grabbed me by the other arm, swore at me, opened the door, and pushed me out of the house.

7. What is your dream job?

7. What is your dream job, and why?

When I was younger, quite a bit younger, I wanted to be a counselor. I earned a Bachelor’s degree with a counseling emphasis. I had every expectation to get my Master’s degree and become a licensed counselor, but didn’t.

To tell you the truth, I wanted to fix broken people. I wanted to change them. I wanted to take their weaknesses and make them strengths. I wanted to make flowers grow in a patch of weeds.

I never told you this before, when I was younger my mom would pair me up with younger girls that also had difficult sibling situations. Sometimes I would visit for a few hours or a weekend. I think that the purpose was to counsel and console them like I did with my mom. There was no doubt I would be a counselor.

Then my last year of college happened. We had a professor that was a counselor. She made me doubt my career ambitions. She took away my unrealistic expectations and told us what it really was like being a counselor.  She told us how her holidays were interrupted because she had a take calls from suicidal clients. She told us of the times she lost clients to suicide and spoke of how difficult it was to handle. I questioned my ability to change people. I mean, I couldn’t even change myself or my loved ones who were struggling.

Really, who did I think I was? God?? To think that I could save people?

I thought about going back to school to be a counselor off and on over the last couple of decades, but no longer have the interest to do so. I don’t think I could listen to people talk about their problems and not do anything to fix them. I really lack compassion for those who are unwilling to change and just want someone to complain to. I think it would be incredibly hard to watch someone spiral down into mental illness and not be able to pull them back out. I would take every suicide personally as a failure on my part.

I also dreamed of being a librarian..surrounded by books in quiet serenity…organizing books..

I dreamed of being a lead singer in a band…exciting weekends being a star.

I even dreamed of working alone in a lab analyzing samples…checking for little details that might be off…water samples…pap smears…biopsies…DNA testing…being away from people using my analytical skills.

But right now, more than anything, my dream job is to be a writer.. I have been considering leaving my job of nine years and going back to get my Master’s degree in writing…The first thing that I would do is write my story…growing up with an autistic sibling… I would make it my life work… I would tell my mom…receive her blessing…get all of her journals that she used to write in to compile with mine… then write…offer hope to (without trying to fix)  people who are struggling…it has been something I have always felt compelled to do… then I would be free from it and spend the rest of my life being a freelance travel writer…travel the world off the beaten path…take many pictures and write…

That would be my dream job..

 

6. The hardest thing I ever experienced

6. What is the hardest thing you have ever experienced?

My childhood was the hardest thing I ever experienced..

Outwardly, people thought that I had it all. I was voted most likely to be a supermodel by my senior class. We lived in one of the biggest houses in town. People expected me to be happy and perfect all of the time.

But inside our house there was always a fresh stream of piss on the bathroom floor. Dirty dishes covered the kitchen counter. Rotten food festered in the fridge. There were many rooms dedicated to the clutter shrine. Stack after stack of newspapers, magazines, and papers adorned the floor. Broken items and unworn clothing littered the forever unfinished bathroom upstairs. Every surface area was cluttered. But it didn’t matter because no one bothered to visit anyway.

Maybe it would’ve been different if I didn’t have an autistic brother or if my parents didn’t have 4 children within 5 years.

Several friends of my parents told them to beat the autism out of him. Believe me, my dad tried. Not surprisingly, it didn’t work.

Maybe things wouldn’t have been as chaotic if Matt wasn’t autistic. Matt sometimes was violent. Pulled hair..bloody lips..black eyes..bruised arms and legs..a head bashed into a nose..poked eyes…Violence often infiltrated our house. I was told not to retaliate or feel anger because Matt didn’t mean it. Didn’t I know that I was the lucky one?

Sometimes we would get excited about going somewhere, just to get there, and have to turn back home again. Matt wasn’t welcome there anymore..

Then there were all of the rules that didn’t make any sense. For example, I wasn’t allowed to wear hair spray, nail polish, or perfume. I had to sneak a bottle of hair spray into my backpack and get ready at school. That was when we were still able to go to school. Matt’s behavior was so intolerable that he was no longer allowed in school so I didn’t go to school either for 3 years.

I lost a lot of friends after Matt hurt them…

My parents argued constantly. My dad lashed out verbally and sometimes physically as well. Half of the household at one time or another was severely depressed. Nooses hung from empty trees. I was fearful of what I might find when I entered a quiet house.

My mom cried out to God at night asking Him why He was punishing her…

My childhood was a time of chaos, disorder, dysfunction, and despair…

4. Ten things to tell your 16 year old self

Day 4: List 10 things you would tell your 16 year old self, if you could

  1. Spend as much time as you can with your grandparents. I hate to tell you this, but friends come and go. Your best friends now won’t even be at your wedding. Soon something is going to happen that will push the friends you have now away. Enjoy the times with friends in the moment. Remember that your grandparents won’t be around forever. They are the greatest source of stability in your life, not your friends.You will never regret spending a lot of time with them.
  2. Your strong work ethic will get you very far in life. However, don’t put work or your long to-do list above your relationships. Take the night off of work to go to your brother’s high school graduation. The $30 you earned that night will never make up for the regret you will feel for the rest of your life for not being at your brother’s only graduation.
  3. I know that you are dealing with some pretty hard things to handle and you feel like you are all alone. These are the hardest years that you will ever face in your life. Hang in there, soon it will be smooth sailing.
  4. Don’t think that you have to be perfect, or even good, at something before you are willing to try it. You don’t have to be good at something to like it either. You don’t have to be perfect. Quit being so hard on yourself. It was a big lie when you were told you had to be perfect. Put yourself out on a limb. Try something new even if you are not good at it.Who cares if you fail?
  5. Leave home when you turn 18 and do WHATEVER it takes to not go back. In fact, move far away. Do not take responsibility for your parents problems. Do NOT agree to be your brother’s caregiver. You should not be giving your brother a shower on a Saturday night. You should be out living your life doing the things that young people do. For once in your life, be carefree. You will already regret not having a childhood, don’t regret not living while you’re young too. Soon enough you will be tied down by your own responsibilities.
  6. Don’t be a caregiver for your brother or anyone else for that matter. Be a little more selfish. Do the things you want to do. Allow yourself to be stupid and make mistakes that you can learn from. Hold out for the library job you will be offered instead of turning it down to be a caregiver. You did enough care giving as a child. This will not be good for you.
  7. Buy an expensive pair of running shoes and start running. Trust me. You need a healthy way to relieve your stress. It is a lot cheaper than therapy and all those bottles of pills that never helped you anyway. Soon you will enter adulthood with enough baggage to travel the whole world. Once you realize their weight, you will have a lifelong struggle with depression, anxiety, worry, and anger. Running will help you get through all the years of repressing your feelings that you couldn’t handle.
  8. Keep writing down everything you experience and don’t stop. It is worth making time for. Some day it will make for a helluva story.
  9. You have to forgive the people that have hurt you for your sake. Pity their weakness. Eventually you will no longer be able to outrun all of the things that you are hiding from. It is going to take a long time to face your demons. You will spend a lot of time reflecting. But eventually you will have to let go..forgive..and trust that God has a bigger plan or purpose for your life. Be a beacon of hope for those that struggle around you.
  10. Try not to worry so much. It annoys me and the others around me. I don’t like it. I want you to relax. Please start working on that now so we can get over this someday.