Goal 3: Start the process of writing a book

For a very long time, I was angry about the things that happened to me in my childhood. Why did my family struggle so much when other families had it all together? I think it was a miracle to survive with most of my sanity intact.

What is the purpose of struggle? What are we supposed to do with what we have been through?? Personally, I believe by successfully surviving my obligation is to reach out and help others going through similar circumstances. I have always felt this way but I was never sure how to do it.

Blogging has been a wonderful way to process my experiences in life honestly. But I found it to be lacking. I don’t feel like I have been able to reach my target audience so to say. They haven’t found me and I haven’t found them either. Maybe there are few that can relate to my life story. Where is everybody? Why aren’t you writing about it? Maybe it just takes a long time to process it like it did for me.

I told myself that once I retired I would write my story. I always put it off into some future place. Then I found myself without a job.

I’ve tried to find books even other blogs of people out their with similar stories and found nothing. How can there be a void? Nothing?? I decided that I am going to be the one to write the story. I don’t think that it will be easy, but I do think it will be worthwhile.

I am going to write the story of a sibling growing up in the 1980’s with a violent autistic brother. This was a time when autism wasn’t an epidemic. This was a time of very limited services. This was a time where my mother was blamed for his violent behavior. This was the time where I was expected to give up my childhood to be a caregiver. I also had two other younger siblings and an abusive father which will be woven into the story.

So I will be processing more journals from my childhood in the weeks to come and compiling everything together to start the process.

I also have some exciting news. My new friend Sue, who is a child psychologist that works with autistic children specifically, put me in touch with someone from her agency. I will be meeting with this person at the end of the month. I have been asked to be put on a panel as a sibling to work with parents. I don’t have all of the details yet, but I feel like this is a huge step forward in being able to help others who are going through what I have been through.

I am very excited about where this could lead even if I am only able to help one person through my experiences. Struggle does have a purpose, I just needed to find mine.

 

 

Would you rather?

Would you rather…be hurt or watch someone you love get hurt?

I’ve been overthinking again.

Maybe the dreary weather has been making me all dreary inside.

It was my childhood.

I feel alone.

If I said I grew up with an alcoholic parent, many of you could relate. But my parents rarely drank. It wasn’t that.

How could you understand?

My autistic/schizophrenic brother Matt hurt me again and again. He threatened me with a knife. He kicked, clawed, bit, hit, scratched, pulled my hair, and punched me on a regular basis without consequences.

My dad was either depressed, angry, or apathetic. He neither hit nor hugged me, but he tore me apart with his words.

My mother was more concerned about Matt than anyone else. If a person needed to pull Matt off of someone he was hurting, she was more concerned that their hands would grab onto him too tightly.

I lost my best friend from high school because Matt hurt her. I was the maid of honor in her wedding, but she wasn’t invited to mine. My mom said, “Oh well, you were going in different directions anyway.” But I didn’t have a choice in the matter.

I always defended my mother and her actions. I can’t seem to see that she did anything wrong.

I always demonized my dad. He never did anything right.

My parents fought a lot. Luke and I sided with my mom. Mark sided with my dad.

There must’ve been some coping mechanism in place to view someone as all bad or all good. Any thoughts to the contrary are declined. I can’t seem to break through it.

When Matt grew up, he threatened to hurt or kill our children at some time or another. Did I expect things to be any different?

How could I feel angry at Matt when he is severely mentally ill? His mind thinks like that of a young child forever.

So I walk this journey of healing alone, or so I think.

I was thinking about it this morning. My brothers Mark and Luke lived through this hell with me. I always thought I had it the hardest because not only was I expected to be a caregiver, I was at the receiving end of most of Matt’s attacks.

But then I thought about something else…

Is it easier to be hurt or is it easier to watch someone you love being hurt and not be able to do anything about it??

I know, I am starting to sound like the horrible ‘Would you Rather?’ game that my daughter has. Would you rather stab yourself in the eye with a needle or nail your hand to the table??

I would rather not be hurt at all. But, I would rather be hurt than to watch a loved one suffer and be powerless to do anything about it.

I recently came to the realization that my younger brothers are victims in this as much as I am. The sound of me crying is etched in their minds. They are haunted by the same demons.

It was my brother Luke’s birthday this week. I wished him a happy birthday and this is how he replied…when we have time, I would like to talk more in depth about when we grew up if you would be open to that.

We never really talked about it, our childhood, in depth.

He wanted to know if I would be open to talking…

YES!

I am not alone, my brothers were there right with me.

 

Autism heard

Matt was a normal baby, very bright actually. He knew the alphabet and was saying simple words at age 2. But that all went away.

Even his birth was not a normal event. After crushing back labor, he entered the world with broken bones.

One day the words went away. He stopped talking. He started having nightmares. He screamed instead of sleeping. But I was too young to remember that.

How could such a brilliant mind be stunted? As an adult he can neither read nor write. He cannot solve simple math problems.

For a long time, Matt did not even talk. But the strangest thing happened. He started talking again. But not in the same way that you or I do. He got his pronouns all mixed up. Matt eat..he never referred to himself as I. He also has a speech impediment that makes him difficult to understand by those who did not know him well. This seemed to frustrate him in his younger years and he hit his head with his fist.

The things he said didn’t always make sense to us.

For awhile he repeated the same song in a monotone voice…hands on the table won’t come off, now the hands are stuck on the beard. He would scream if he saw a man with a beard.

But a man with a beard never hurt him.

He was also terrified of tires. He would kick the tires and throw stones at them if people showed up in their cars.

He also heard sticky noises. He would smack his lips to mock the sounds he was hearing. It was a disconcerting sound like chewing with your mouth open times ten.

He also heard the sound of girls laughing at him. Back in the day, he was sent out to recess with the rest of the kids. The older girls teased and mocked his bizarre behaviors. I was there and saw it but was helpless to do anything about it. I didn’t fit in with the other kids because they made fun of my brother. He was an easy target. It made me angry all of the time. But I wasn’t allowed to feel anger. Anger was wrong and it upset Matt. Angry emotions set Matt off and he would hurt himself, my mother, or me. So I withdrew to survive.

Recently Matt was taken off of his anti-psychotic medication due to liver strain. He started to hear voices again. This time the voices were telling him to hurt my niece. But not just hurt her, to kill her.

Fifteen years ago, Matt hurt my daughter. The voices told him to do it. He started to obsess about her, so we limited their contact at the time. It was on her 4th birthday. We didn’t think it would happen…

Afterwards, he muttered to the voices for hours and couldn’t be brought out of it. He didn’t respond when spoken to.

For many years after that my brother was not allowed around my children or any children. He became home bound and isolated from the general population. If it happened again, he was going to be locked up with the violently mentally ill. He started a new medication and silently gently the violent whispers faded away.

My mother asked lately if he was misdiagnosed. Is he schizophrenic too? Or is this some unusual symptom of autism? The doctor said that at this point it really doesn’t matter since it will be treated the same way.

Matt was violent before he hurt my daughter. If we were vigilant enough, we could see it coming on. His jaw would clench, his face contorted, his pupils constricted, and his ears turned bright red.

Sometimes after he hurt someone he seemed very upset about what he had done. Other times he would laugh. It was such an evil laugh that a few asked and we wondered if it was possible that he was demon possessed.

He struggled to differentiate between reality and what the voices were telling him. The voices are very frightening to him.

I think he always had auditory hallucinations, but couldn’t verbalize it to us.

It made me wonder…what if other violent autistic nonverbal people also hear the same voices but can’t tell anyone? How terrifying that would be. What if they think they are being hurt or are hearing a voice that tells them to hurt someone or themselves?

If I would go back to school to get a Master’s degree or PhD in Psychology, I think I would devote time researching this. I couldn’t find a lot of information online. But what is there to find if those who suffer cannot communicate?

This has been incredibly hard for my mom. She can’t mention my niece’s name around Matt. He obsesses about her. He is angry if he thinks that she likes the same things he does and talks about hurting her.

It is hard for us all. I love my brother and don’t want to see him suffer. I love my niece and I don’t want her to be hurt.

How long will it take for the medicine to work?

 

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…

A little out of range

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This past weekend was long. We spent half of the weekend cleaning out my grandma’s house. The rest of the weekend I did my 12 mile run followed by watching my daughters perform in a summer school musical theater show. It was a little difficult to watch my oldest daughter perform. She had the lead part and as a senior, it was her last summer school show. Her childhood is coming to an end. My mom and Matt came out to the show, which involved some inappropriate public behavior on Matt’s part. Minor stuff, like yawning loudly and getting up to stretch out his legs in the middle of the show. At least they came out, which I appreciated. My in-laws didn’t bother to come to the show, but stopped by shortly after we got home. My daughters asked their grandparents why they didn’t come to the show. They said they were too busy shopping. They were planning on coming out but didn’t show, which is not abnormal behavior for them. I don’t even bother telling the girls that their grandparents were coming just in case. The last time they cancelled out last minute brought so many tears before a show that it wasn’t worth the hurt. I don’t know how they had the audacity to stop by after shopping. It is what it is.

By the time the weekend was over I felt exhausted and a bit troubled. Cleaning out my grandma’s house has forced me to clean out tons of physical and emotional cobwebs. My brother Mark found this oven (pictured above) while cleaning. I recognized it as mine. Inside there were magazine cutouts of finished recipes. Mark said that I must really have liked to cook because the front right burner was wore out. I thought nothing of it. Then this morning it hit me. It started with a small noise at work. Then it took me back. I could hear a horrible grating sound, scratching like nails on a chalkboard over and over. Then I saw Matt’s hand with a big yellow Lego scratching my oven over and over. I think he was loud, screaming. The next time grandma watched us my stove was banished, locked in a shed for 30 years. A few tears escaped my eyes. My heart mourned over the many things I lost.

It never was supposed to be that way, but it was.