special ed

On writing

/ Outrunning my demons / 4 Comments

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

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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.

 

 

The dark unfeeling cardboard box

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When I was a young child, I never really liked school a lot. Sure, there were some bad teachers, some good, and some everywhere in between. But it really wasn’t that. It was never that. It had more to do with Matt, my autistic brother. Being less than 2 years younger than me, I could never get away. The school really didn’t know what to do with Matt. He was the first autistic child to come through the school district. When he couldn’t function in a regular classroom, they cut the library in half to make it a special ed room.

For a long period of time, Matt was nonverbal. Oh, he did scream and cry but he did not talk. He was uncontrollable. His teacher at school set up a naughty box for him between the library and special ed room. Almost every time we had library, my brother was in the box screaming and flailing around. The box seemed high at the time because I was so little. When my class lined up to look at books, the kids could peer into the box. Most of the time the kids laughed and I hated them. I put my feelings in a big box that seemed even bigger than the box that Matt was in. Many times I would rather be trapped in that empty box devoid of feelings, life, and light than to face the pain of the real world.

For a long time I floated around in my own little world. How could I make friends with my classmates? How could I like the kids that called my brother a retard? I went deeper and deeper into that box. I stopped eating. I didn’t talk to anyone. I started failing my classes. The only thing that touched my heart was music. I had this focal point that I would always stare at so I didn’t start crying in that class. I was so lost. My mom was very concerned, she had the school counselor talk to me. She was a wonderful person who tried to help me make friends and talk about feelings.

My mom wasn’t in much better shape herself. Mother daughter outings with the extended family ended up with my mom sharing with the family how much she hated autism and all of the things that Matt did or didn’t do. The family just wanted relaxation and fun. They were uncomfortable that my mom was crying and needed their support. They stared at me all the time. When I was alone with family, they peppered me with questions about if my mom was ok and how was Matt. I didn’t feel like anyone cared about me. Most of the time they were just trying to help without being very helpful.

One day Matt started talking again. He told stories of how his teacher in the grade school was abusive towards him. She shoved him under her desk and sat down at her desk squeezing him in there. He also said that the teacher would place him face down on the floor and sit on him making it hard to breathe. My mom asked me if this could be true, she was very upset.

After everything that happened, my mom tried to keep my younger brothers sheltered from going to school with Matt. She sent my brothers to parochial schools and schools that were out of our district. I wonder if that had anything to do with me not responding well to being in school with Matt. Did I save my younger brothers some pain? I hope so.