On writing

I took a step back from writing my book.

I was doing it all wrong. In January, I just jumped in and started writing. I took a break when we went on vacation in the beginning of February and haven’t wrote a word since.

It has become common knowledge now that I am writing a book. When my mom found out, she brought over 2 boxes of journals. I sat down and read through them all over a weekend. Most of them were notes between my mom and special ed teachers. It really gave me a glimpse into some of the school day that I didn’t see.

It was a reminder to me how incredibly violent my brother Matt was. There were times that he threatened school children with scissors and was into poking eyes. That is just a small glimpse.

Then I went and reread all of my personal journals. I flagged all pertinent parts of at least 15 journals and created a general outline of what I wanted to share in the book. Then I am going to go back and rewrite what I already started. I am even thinking about asking my other siblings if there was something that they wanted me to share. But I am afraid that they will be more open to what they don’t want me to share.

I decided that I will not write when I am really stressed out or feeling depressed. The next couple of weeks I will be performing a major part in the community theater production. That would not be a good time to stir my demons.

I have to be careful. I have to know when to run forward and stay back. I could get lost in it or worse dragged back into it. There have been times that I experienced PSTD symptoms. It is horrifying, but I am not afraid of it. I have people around me that will make sure I am safe. This is what I was meant to do.

I see writing this book as a challenge similar to my desire to conquer a 50k. It is a test of strength, determination, and will.

The people who know what I have experienced are saying that I am brave and strong to tackle this. I have a unique story that unfortunately is not unique anymore. When my brother was diagnosed with autism, as the first generation of de-institutionalized mentally ill, it was rather rare.

This is going to be a story of survival and abuse, many people do not realize that when I talk to them about it…the people that didn’t know me then. I seem so normal, healthy, and strong. But remember how I said I am in community theater. I can be a good actress. They don’t know how difficult this is going to be emotionally. I have to be very strong. I have to be smart to notice if I am slipping.

I am doing some public speaking in September for the local autism chapter. When I told the woman that I was going to write a book about my experience, she said that she knew of a publisher who would be interested. Maybe that should be my last resort. Maybe I can do this. Maybe this will be really big. If not, I am okay with it. I want to tell my story for me. I want to heal. I want to help others feel like they are not alone even if it makes me look bad.

I have decided to also keep my blog personal. I am at times tempted to share this blog with family and friends. I can’t waver. If I tell you I am tempted, please remind me of my words. It is a struggle to be fully honest with myself and others. I need to be completely genuine.

I can’t let anything stop me from telling my story.

 

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.

 

 

My psych eval (25 years later) parting thoughts

Sometimes the trip down memory lane does not take us down a smooth path.

I admit that this series was not easy to write about. I actually did most of the writing over the first weekend when I had more free time than I usually do to overthink things. I spent hours on the recliner under a blanket next to a cozy fire. I felt cozy on the outside, but inside I was stirring my demons.

At other times I wrote when I was very busy and didn’t have a lot of time to think. In those times, I felt nothing about what I wrote. Disconnected. No feelings, just the facts…but insightful none the less.

I started reading a new book I ordered online about growing up with a disabled sibling. I threw all caution to the wind and dove in. I felt miserable and moody. I pushed away everyone that tried to care about me. At one point I broke down and sobbed. People, this is not how I normally act.

I questioned if I was a worthy person. What is my purpose? I worried. I had bad dreams that my son found out about my blog and hated me. For a brief moment I contemplated deleting this blog altogether. It is way too personal. It is getting to the heart of where my demons lie.

One morning I woke up crying after dreaming that my daughter died. The nightmares came back.

I wondered if I could give the blog a mature rating. Then I laughed about the thought. Really? Is me blogging about my childhood unacceptable for children to read??

I felt anger towards my parents for the things they allowed to happen. I felt guilty for feeling angry. It wasn’t easy for them either. My parents are old and need me now. But where were they when I needed them? I still believe that my mom did the best that she could.

Writing heals my soul. But why does healing have to hurt so much??

My psych eval (25 years later) part 8

At times Alissa had the appearance of as if she might cry at any moment. She said that she cannot remember many things and cannot remember portions of her childhood. She may pull back in therapy and treatment when things are going well, discontinuing experiences that might have proven gratifying. She may defeat her chances to experience events that can promote growth and change. It is cautioned that therapists should not set their goals too high or press changes too fast as Alissa cannot tolerate demands well.

Sometimes I wonder what you would see in me if you met me. I bear my heart and soul, but you can never look into my eyes. What would you see if passing by?

I find it very troubling that as a teen I said I could not remember portions of my childhood. What still lurks beneath the surface? I find the thought terrifying.

You know what the funny thing is? I am a blatantly honest person, yet I am the biggest liar. I’ve been lying to myself for years. I have been working lately on being honest with myself even if the truth hurts. When traumatic events happened, I told myself that those things didn’t happen.

I locked my feelings behind a door in my mind. Many years later, the door unexpectedly opened and I experienced the feelings many times worse than it may have been. I just couldn’t handle the truth when it happened. I could barely handle the memory of it. I have many such demons behind many such doors. I am afraid.

Telling myself the truth has been causing me to have a lot of anxiety. What is real? What is not real? What if something that I thought was not real is really real? What do I do about it given the new information? I have been lying to myself for so long that it is hard to tell what the truth is.

Reading this psych eval has really opened my eyes. In many ways I have progressed greatly in 25 years and in other areas I have only crawled a few baby steps.

My brother Luke said that emotional development is stunted at the age that the trauma starts. I laughed about this. My first childhood memories and most of my childhood memories in general are very traumatic.

Am I an emotional infant?? Maybe I am. I am still stuck in the trust vs. mistrust stage of development. I can’t talk to friends about this because I don’t trust them. If they get too close, I push them away. But what is to be lost by trusting a few trustworthy people? I don’t understand myself sometimes.

A few of my family members have sought counseling and have reached out to me to do likewise. But I am stubborn and proud. Remember that Alissa does not tolerate demands well. Ha! It’s true, I don’t.

I went to a counselor a couple years as a teenager. She always talked about the feelings chart. I remember that because I didn’t have any feelings at the time. I don’t know why I stopped going. She said that I had the second worst childhood of anyone she has ever seen. I remember that too. I really liked her and hope she never felt like I left because of her.

I was always comfortable growing and changing at my own pace. I don’t want a diagnosis or to be made to feel like something is wrong with me because of the experiences I went through. But maybe if I went to a counselor I could grow and become a better person faster. I don’t know. I will think about it.

 

My psych eval (25 years later) part 2

In discussing how she felt as a youngster, Alissa described herself as very depressed. She immediately identified family problems as a major concern including her autistic brother. She described her brother as getting violent in the past including hitting and scratching people. She said that she couldn’t have any acquaintances come over to her house. At one point in time he was so allergic to his environment that the family members parked at the bottom of the driveway and then walked to the house. She said due to his allergies she could not wear hairspray. All of her clothes had to be washed in baking soda. Alissa further indicated that her father was emotionally abusive. Alissa said that she witnessed her father hitting her brothers and that would bother her. She described her parents as fighting day and night. Another stressor she identified was the death of her dog who died a painful death because his intestines twisted. Alissa was present when he died. One of her neighbor’s friends said that they should have shot the dog prior to his death.

Do you notice anything unusual or is it just me??

I mention years of violence at the hands of my autistic brother. I mention my dad being abusive. I mention not being able to have friends over. I mention extreme and bizarre rules. I mention parents that always fought. I mention not being able to wear hairspray in the big hair days.

Those are major stressors that I had to deal with my whole childhood. Plus my brother being allergic to car exhaust and having to wash clothes and brush teeth with baking soda??? Does any of that sound like a sane and healthy environment to you?? And I’m the one with the psych eval?? It’s a wonder that I am a little angry and not stark raving mad.

Then I randomly mention being stressed out by my dog dying many years ago when I was 12 years old. It wasn’t just being there while it happened that was stressful, it was having to call the shots.

I remember taking the dog to the vet with my mother earlier in the day. No hope…taking her home to die. Why didn’t my mom put her to sleep? Didn’t she know how horrible it would be? It lasted for hours. Going into shock. Blood on the floor from biting her tongue. Wheezing and gasping for breath. Panting and shaking. The bile and blood. Us kids scared and crying. My dad in the next room talking on the phone laughing, disconnected.

Maybe we should ask the neighbor to shoot the dog. What should we do, Alissa? No, he is a mean man. He shot his puppy for chasing the chickens. I don’t want him to hurt my dog.

So I watched her suffer because I was afraid to pull the trigger. I said ‘no’ to my mother and she listened. But I was 12! I reasoned like a child. I didn’t want to have someone hurt my dog that liked hurting dogs. When I was 18, I realized I made the wrong call. Now at 44, I realize that I shouldn’t have been making adult decisions as a child. I often was called upon to help make adult decisions because my dad bowed out.

Try asking a child to make major family decisions and see how that works out for you.

I feel robbed, cheated. Maybe if I had a different life I would’ve been the carefree person that I wanted to be. It is hard as an adult feeling like I never had that time. Soon I will be talking with my parents and siblings about guardianship of my disabled brother. I feel burned out. I have always had to be an adult. I always had to be the caregiver at a very young age. Then I left home and had a family of my own.

Is it wrong to want to be done parenting once my kids leave home? Is it selfish to want to spend some time only having to worry about myself?

I am a horrible person. I don’t want to be my brother’s guardian. I want to be young and carefree. But I’m not sure if that life was meant for me.

My psych eval (25 years later) part 1

Alissa was referred for psychological evaluation at this time by her therapist…Alissa has a long history of outpatient treatment including an inpatient hospitalization at the end of December of 1992. Alissa has utilized a variety of medications including: Prozac, Pamelor, Anafranil, and is currently taking Wellbutrin. Alissa was referred for this evaluation due to concerns about her OCD and possible ADD.

The family system includes an autistic brother who has proved challenging for all family members. For a time period Alissa functioned as the caretaker for the brother…Alissa has had a difficult relationship with her father. The father reportedly has several indicators of a possible psychiatric disorder. Alissa’s mother will spend many hours a week working.

Alissa has had depressive and suicidal symptoms starting in the fourth grade…Throughout the meeting with Alissa it became apparent that she has had serious psychiatric symptoms for many years. Her condition is quite serious and of a chronic nature…At the time of this evaluation, she had reddened hands which she attributed to dry skin. Due to the OCD, this examiner speculates that the hand condition does reflect excessive hand washing. She stated that as a younger child she would wash her hands frequently, including before and after eating, and before and after using the bathroom.

Symptoms that Alissa currently endorsed include checking to make sure that she has turned off the lights on her car. Due to the distance involved it is a major inconvenience for her to go to the classroom building at college to the parking lot to check on her car. She did go to this extreme measure and when she got to the car realized that she had turned the lights off even though she was not consciously aware of doing so. At other times she will have to check numerous times to ascertain the exact location of her purse. At home she counts a short flight of steps constantly whether she is ascending or descending the steps. This seems to be a strongly ingrained ritual. This examiner believes that there are other examples of obsessive/compulsive thoughts and behaviors that Alissa is not acknowledging at this time…She does describe the checking behavior in terms of feeling she “has to” check.

Yes, it is true that I was very depressed at a young age. I remember people telling my mother that they have never seen such a young child so depressed before and that I needed help. But there weren’t many programs available to special needs siblings. I felt incredibly alone and disconnected from my peers. I started seeing a therapist in my late teens.

It was especially hard in grade school because my autistic brother was in the same school as me. They had a special ed room that was shared with the library. I don’t know whose dumb ass idea that was. It was never quiet in the library, although we were told to be. That probably made my brother’s behavior all the more shocking.

When I would go in for library, my brother was oftentimes flailing around as if he was possessed inside of the big ‘naughty’ box they put him in that was located between the classrooms. This caused my classmates to point, snicker, and laugh. It made me feel angry, sorrowful, and ashamed. He was MY brother. It was very painful.

I think I developed rituals to help me cope, to feel like I had an iota of control over my life. The hand washing ritual started when I was in middle school after I was almost attacked in the parking lot while I waited in the car for my mom to finish up with her support group for parents of special needs children. The support group was held in the library and sometimes the library closed before the meeting was done and I would meet my mom in the car. That hot summer night I felt like I was suffocating in the locked car while those guys tried desperately to get in. It was so hot, but I didn’t dare open a window. The car handles were dirty. I felt dirty. Hand washing made me feel clean and cleansed.

You would think that I would have issues with libraries or books. Sheesh!

I like to have clean hands, but I haven’t obsessively washed them in decades. I like things clean and I like to feel like I have control even if I don’t. My parents are hoarders. Our house was always chaotic and messy.

It’s strange how I can be obsessive without being addictive since they seem so similar. But I don’t want anything external to control me, yet sometimes the internal things still do. Sometimes I still have to check things..

To be continued…

 

My psych eval (25 years later) intro

I’m going to start a new series next week.

Alissa, why would you want to share your psych evaluation from 25 years ago? Are you crazy?? Good question fellow readers! Good question!

First of all, I don’t care what people think of me. I really don’t know if I ever cared. I gave up on that somewhere between my brother attacking everyone around me and my dad walking around the house in his underwear.

If you don’t care what people think, then why is your blog anonymous?

For some reason I can’t talk about this stuff with the real people in my life. Who wants to talk to people in person about their darkest days anyway? What a drag! I don’t want people in my life to see the shattered pieces of me. I think I managed to glue the pieces back together in a way that most people cannot see the cracks unless they look closely enough. I keep my demons locked in a back corner closet of my mind. It is only through writing that I can release them..

Alissa, you are pretty good at dodging the real question of why you want to share a part of yourself that could be damning.

I think that this piece of the puzzle offers the most hope. I was a real mess 25 years ago. How did I cope? How did I survive the constant stress? I spent a lot of time in fight or flight mode. I think that the mind shatters a little to survive. But what happens when you work your way through it?

We are going to take a little trip down memory lane right after I endured a great time of trial in my life. Then we are going to skip ahead to see how I am doing now. I think it is going to offer hope for others who are struggling.

Whatever you are going through won’t last forever, even though it might feel like it at the time.

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 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.