Autism

Speaking instead of talking about it

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Last week I had a meeting scheduled with someone from the local autism chapter. In a couple of months, I am scheduled to be on a panel as a sibling talking to parents about my story. What does this mean?

I am going to be given an hour to talk to parents of autistic children on how it feels to be a sibling. An hour! I will write my own presentation where I will speak in front of parents for 45 minutes and then have a 15 minute question and answer segment.

I did not know that I would be doing public speaking. Alone! In front of an audience. She also asked if I felt comfortable being recorded. Absolutely! I have no fear in doing any of this. In all honesty, I always saw myself doing this some day.

I also told her that I started writing a book about my experience as a sibling. She thought it was a great idea and also thought that there was a niche out there for a book like mine. No one else is doing this. She said she knew a publisher that would eat my book up if I decided that I wanted to publish my story. She said that she could also link my public speaking to this blog and would do what she could to promote my book.

She said that in previous videos, she received up to 7,000 views. People just love personal stories. This is where my fear started. I am not afraid to be a public speaker. I am not afraid to talk to strangers about my very personal experiences. I think it is powerful and moving. But, and here is the big but, I am afraid to tell my story to people I know.

I am afraid of getting more followers. I am afraid to put myself out there. I am rather paranoid about being found in all reality. That scares me. I’m not even sure why. Who cares, really? I won’t let anyone in. I have never told my friends my story, maybe just bits and pieces. My friends have asked to follow my blog and I told them that it is too personal.

I refuse to use my real name. But it is getting bigger. It is starting to snowball and I’m afraid I can’t stop it. But the question remains, why do I want to stop it? Isn’t it time to let people in?

This is my struggle, I want to tell my story but I don’t want anyone to know about it. I don’t know why this scares me more than public speaking. You would think I would want to talk about it with friends and family before speaking about it to strangers.

Has anyone else ever experienced this? How do I get over this fear?

Doubt

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Would you be willing to hurt people you are closest to in order to help strangers?

Fear that is toxic. Anxiety whispers an endless echoing rhyme. Worry incessant. Doubt creeps in like a vine that entwines the wrestling demons running around in my mind.

I’m not sure I can do it. It’s too risky. Who do I think I am? Do I really think this will be a bestseller? Do I really think that my poison will be a tonic? Do I really think that my story is going to make a difference, change things?

Really, Alissa, you couldn’t even save your own family.

The thoughts painfully pierce my poorly healed wounds. The scabs tear away and bleed onto my parched paper skin. The memories scratch at the demons inside. They wreck havoc on my mind. Tears slip from my eyes.

Now I understand why there aren’t a lot of siblings telling their stories. I get it now. It is too painful. If the story is going to be effective, I have to be brutally honest. But that honesty is going to hurt, not just myself but other people.

Tomorrow I have a meeting with a lady from the local autism group. She wants me to be on a panel representing siblings of autistic children in front of a group of parents. There are not a lot of programs available for siblings because they are ‘normal’. I think that is very tragic if a child needs help and doesn’t receive it because they aren’t special enough.

My goal is to write a book about my story as a sibling. I want to advocate for siblings. My thought was to write a book and donate a certain amount of the proceeds to go towards helping siblings that are struggling through support groups and therapy, etc. Just how it is all going to come together is not totally known to me at this time. I would be willing to donate my time and money to help other’s struggling through what I’ve experienced.

Maybe tomorrow I will have some answers. But as for today, I never want to write again. I want to delete my blog. I want to throw the book that I started into the trash. I feel unsettled, almost angry and sad. Restless.

I am at a crossroad of sorts. Will it make a difference? Am I just picking at scabs and bleeding out into my words? Will it heal me? Or will it hurt me and those I love? Should I just let it go?

Will I be able to help others? Am I being delusional that I can make a difference? Would it be worth it if my story can help someone contemplating suicide if  my family turns away from me? Maybe my vision is too grandiose?

I am absolutely terrified, but I think it will be worth it.

What if I don’t help anyone and end up alienating myself from my family? Do I have the strength and courage to do what needs to be done?

I have my doubts.

Prove them wrong

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Never let someone’s opinion of you define who you are. Sometimes they make mistakes too.

Although I may be in over my head this time.

Last week my daughter Arabella and I tried out for the local community theater musical. I got cast in a very challenging vocal part. The director said she was happy that I tried out because she didn’t think that many people could handle the part. How horrifying!

Yesterday, I talked about how I wasn’t very athletic in school and now I am a marathon runner. When I was a child, I really wanted to be a singer. But I allowed a teacher to crush that dream.

The choir teacher was the same person that axed me as a cheerleader in middle school. In my defense, when I auditioned to be a cheerleader I had the flu. I stayed home from school the day of auditions with a high fever. The choir teacher said that if I wanted to try out I had to audition on that day, no exceptions. That evening I went to school with the flu and auditioned.

Now in her defense, I couldn’t do splits or flips like some of the other girls and was probably clinically depressed since grade school. Having the flu didn’t help with my audition either as you can imagine.

I wasn’t a good athlete and don’t blame her for not selecting me to be a cheerleader. But I always thought I was a good singer.

More than anything, I wanted to be in the high school jazz choir. But I didn’t bother trying out. The choir teacher didn’t like me. I’m not even sure why, I never did anything to her. There were certain teachers though that did not like me based on my autistic brother’s behaviors. Perhaps you have been judged for a sibling’s misdeeds? It sucks! There were certain old school teachers that blamed my mother for my brother’s autism back in the day and I think she was one.

The choir teacher picked a song for solo and ensemble for me. On the first practice, she told me I was a horrible singer and there was no way I was ever going to compete. I was so humiliated. Maybe I really did suck?

Remembering her words and cheerleading tryouts, I didn’t bother auditioning for jazz choir.

I gave up my dream. In college I wanted to audition for choir, but didn’t think I was good enough. It wasn’t until many years later that I started to sing in front of people again. Wow, you are very good at singing. You must have been a star singer in high school. What?

Now my daughter Angel is going to college for vocal performance. She has a very similar voice to mine. She has been to many competitions around the country and has done very well.

The choir teacher could have made a positive impact on my life. She could have encouraged me and worked with me to make me a better singer. She could have given me something to take me away from my troubles at home. But instead, she squelched a dream.

The choir teacher, whether she knew it or not, changed the path that I chose to take. She was a horrible teacher. I wish I didn’t give so much credit to her opinion.

Challenge accepted, I’m going to do the best I can at this role. Maybe I will dedicate this show to proving my choir teacher wrong.

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.

 

 

My last day of work

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Friday was my last day of work. I thought that I would be feeling down like I did most days leading up to the last day. Instead I felt relief, and a lightness of spirit. I did end up inviting some close friends over that evening. Two out of three couples came out for my pity party. Two out of three ain’t bad for short notice over the holidays.

I invited out the brewer and his wife, the psychologist, whom I will call Rhett and Sue. Sue told me that she gave my name to her boss as someone who was interested in talking to the parents and siblings of autistic children. I still feel interested in helping people through similar experiences that I’ve had. I want to write a book. But first I want to go through all of my journals. It is going to be a slow and tedious process.

We also invited over Tim and Cara. Cara just wrote a book and now that I have more time, I offered to read it critically. She encouraged me to write my own book. Right now Cara’s job is also on the line. She would love to be a full time author. Paul and I thought of starting a sailing business with Tim and Cara. Paul is working on his captain’s license as we speak. It’s crazy, but we are thinking of starting another business together.

I’m not sure where the future leads right now, but I know that these other couples are involved in it in some way. We had a lot of fun Friday night and did a lot of laughing. I felt like whatever happens everything would be alright.

And so the journey starts…

The day after Thanksgiving

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As you could tell from my last post, I was rather stressed out about the Thanksgiving holiday this year. In fact, the day before Thanksgiving the boy with the face tattoo showed up at our house and we had to kick him out because our son is grounded from having friends over. We were so stressed out that Paul and I wanted to cancel Thanksgiving altogether.

The strange thing was that it ended up being one of the nicest and most peaceful Thanksgiving’s ever. There weren’t any fights or problems.

I had to work late on Wednesday, but Angel came home from college and helped do some cooking with her boyfriend Dan. Paul made the turkey, stuffing, potatoes, and gravy. Everyone else brought a dish to pass. My brothers Luke and Mark didn’t make it over this year. But both of my parents came out with Matt which was surprising since my dad hardly ever comes out to family functions. He was even on his best behavior.

My mom even had boundaries with Matt. She asked him if he wanted more food and told him that he needed to get it himself versus waiting on him hand and foot. Before she would bake him a special meal, serve up his food, cut it into smaller pieces, go get him more food if he wanted it, and then clear his plate after the meal.

Paul’s step-dad Daryl and my Uncle Rick also came out. They have a lot in common and get along really well. After supper, we played cards. Angel did not play because she had homework to do and crafts to make for sales on her Etsy site. She is so much like me it is crazy! She is off volunteering today, so hopefully she will have time to play some games tonight.

Arabella had to work Thanksgiving morning and all day today. My girls are very industrious and for that I am thankful.

Even Alex sat with the family most of the day. Later that night he played the piano. It has been a long time since he played. I’d almost forgotten how beautifully he plays. The thought crossed my mind that maybe he didn’t want his friend over for holiday break. He is a totally different person around friends versus family. Today he rode his bike to a friend’s house since he is grounded from his car.

It is a beautiful day though. We have temps in the low 40’s. It is windy and sunny. I decided to take a run outside today on a new route. That is the fun thing about moving. There are a lot of new and exciting running routes.

Finally I’ve been able to keep my head above water and grab a few gulps of fresh air.

Self-therapy breakthrough

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Last night I dreamt about Matt for the first time that I can ever remember.

Yesterday I went to the mall shopping with Arabella and my mom. My mom spent most of her time worrying about getting back home because she had to give Matt his medicine. Frankly, it didn’t bother me much because I wanted to go home early because I hate shopping. It was my daughter Arabella’s choice for a girls day and she picked shopping.

As I mentioned before, my brother Matt is autistic and most likely schizophrenic as he hears voices that tell him to hurt people.

As a child Matt would:

  1. Have psychotic fits out the the blue where he would be violent towards himself or others. I don’t believe that this was within his control.
  2. Have episodes of anger where he would be violent towards himself or others when he was asked to do something he didn’t want to do. I believe this was within his realm of control.

Sometimes it was hard to tell the difference between the first and second scenario. Matt did not have a lot of chores besides unloading the dishwasher. When asked to do that, he would sometimes hit himself on the head. Matt did have a lot of trouble in school. When asked to do his school work, he would often attack his teacher or his aide.

There was a time when Matt was schooled at home due to his extreme psychotic outbursts. The district sent a retired school teacher to our house. That woman was a saint because she was strict while loving. Some days Matt didn’t cooperate and she had to leave early.

Later Matt went back to the public school. At one time, my best friend was his aide. When asked to do work, he often attacked her just because he didn’t want to do it. One time after he attacked her, she called the police. They came to the school and hauled my brother away in handcuffs.

After that incident our lifelong best friendship dissolved. And I wonder why I have trust issues with friends??

I had a dream that Matt and I were at an amusement park. I was watching him. I told him that he couldn’t go on any more rides because he hurt me physically. My mom overruled me and said that Matt could go on the rides. I told her that if she wanted to have Matt go on the rides that she could take care of him. Matt was angry at me for saying no to him so he hurt me. He spit on me. Then Matt hurled himself off of the cliff. He landed grotesquely on the pavement below. I was afraid that he was dead or seriously hurt. But the feeling that I felt the most was guilt.

I woke up realizing for the first time that Matt hurt people when he was having a psychotic fit and when he had to do something he didn’t want to do. I feel angry that he was never told that his actions were wrong. It would’ve made me feel better, like there was justice, even if he had absolutely no control over it.

Matt had total control, but no one else ever saw it that way. Was I wrong? I don’t think so. Matt was in control of our house and he wanted things his way. If we were all packed up ready to go and he wanted to stay, we stayed. If we were all too hot to sleep but he wanted the fan off, it was turned off. Anything that could set him off was taken away. One Christmas a boyfriend gave me perfume, I threw it away because I wasn’t allowed to wear it because it might set Matt off. We had to live our life around the god of what might upset Matt. Matt had to have things his way or somebody was going to get hurt.

You have no idea what it is like to be forced to worship that kind of god or how it messed up my life. I am just beginning to realize.

Chaos reigned which is why I need to live in a controlled environment today. I like my schedule, routine, and organization. It is my security blanket. I like to control the temperature and lights in my house, etc.. I learned to have control over the little things to find comfort. The things that most people don’t care to have control over like the placement of an object on the shelf. It is safe. I go absolutely crazy if someone tries to take my control away which is not even a bit logical. It gives me extreme anxiety. Turn on the lights right after I turn them off and see what happens. It makes no sense.

I have also learned to have a great amount of control over myself. Me. No one I know can beat my self-discipline with the possible exception of my brother Mark. At times I make myself hard to love. I am tough. I have high expections on others and even higher expectations for myself. I embrace pain and deny myself pleasure. I guess that is what attracts me to long distance running.

I am too old now for a baby security blanket. I have to learn to be able to rest without it. But I can’t relax.

I’ve made a tremendous amount of progress on my self-therapy.

This session is over.

Healing wounds

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My mom hasn’t been feeling well since she retired. At first, the doctor thought that she was having problems with her gallbladder. But instead, she found out that she has an ulcer which she attributes to the stress in her life. I think that working and keeping busy kept her mind off of it. I understand because that is how I cope.

It has been a rough year for my mom. It’s been hard since she took my brother off of his anti-psychotic medicine due to some health issues. Matt started hallucinating again and became fixated on wanting to hurt my brother Luke’s daughter.

My mom was looking out for the best interests of Matt and my brother Luke was concerned about protecting his family from Matt. This caused a lot of conflict.

It stirred the demons from our childhood within Luke. This was a very painful time for Luke. But it was also a catalyst for him to process, deal with it, and heal. I’ve found that the healing process is very difficult. It has forced both of us to deal with feelings that are unexpected that we have never processed before.

It is hard for my mom. She says that it is very hard to deal with a child that isn’t okay. She spent day to day just trying to survive. I can understand that more now that I have teenagers. I worry all the time about how the decisions my son makes will affect his whole entire life. It’s a heavy burden to carry worrying that your child is falling but nothing you can do will pick them up. I somewhat understand.

Luke feels a lot of anger towards my mom for favoring Matt over him and even over the safety of his children. Matt will always be first in my mother’s life and I have come to accept that. I was once in Luke’s place when Matt wanted to hurt my kids. I had to have boundaries. I had to be the bad guy. I had to isolate myself from my family when I needed their help the most. I understand.

It’s not easy and there isn’t an easy answer. Some good has come out of it though. Luke started the healing process. We have been having a lot of deep conversations and working through this together. For the first time, we have each other. Sometimes good can come out of bad. This has given us strength that we never thought we had.

Matt has been back on his medicine for awhile and is passive again. The voices in his head have been quieted. It’s surprising how long it has taken for the rest of us to heal our wounds. Slowly, surely we are on the mend.

The brewer’s wife

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Recently I met someone new under unusual circumstances. We met through our realtor, at a party she was hosting with a stranger at the stranger’s house. Generally this was out of my comfort zone as an introvert. Paul, the extrovert, said that he didn’t care either way if we went. It was rare to have a weekend evening free at the end of summer. Even rarer was that the introvert was all excited to go. I wanted to meet some new people in the neighborhood.

The party had an eclectic variety of home brews that were remarkably good. Paul said that he wanted to thank the brewer for offering up his marvelous beer. We had a long conversation with the brewer and he stated that he loved sharing his beer with friends. I jokingly asked him how we could become friends.

Skip a month ahead…I was planning Paul’s 50th birthday party. I was wondering what to do about drinks. I was already planning on having the food catered in. Then I thought of the brewer. I asked him if he would be willing to share his beer with us for the party. I offered to pay him which apparently was illegal. Whoops! I didn’t know. He said he wouldn’t accept money, but would do it for a friend. So we set up his kegerator at our house with 3 of his home brews.

After the party, we invited the brewer and his wife over for supper and to pick up the kegerator. Now the brewer’s wife is a doctor of psychology. Most of her clients are autistic. She also works with their families.

I had my first one on one conversation with the doctor. I ended up telling her a lot of things that I don’t even tell my closest friends after knowing them for years. I told her about the day on the lake that my brother almost drowned. That day, at age 6, I was left alone to watch my 3 younger brothers swim.  Alissa would certainly yell if there was a problem, but Alissa didn’t. I told her that since I was in grade school I felt like an adult.

I told her that I was homeschooled from 8th grade through 10th grade because my autistic brother was too violent to go to school. I told her that I lived my late middle school and early high school years in great isolation from my peers. I told her how I was a caretaker for my brother. Instead of going out with friends on a Saturday night, I helped shower my autistic brother. I told her that for many years I was a massive bruise from when my brother hit/hurt me. I told her the hardest part was that he never was told that hurting me was wrong.

I told her of my restrictions because those things could set Matt off. I wasn’t allowed to use hair spray, wear nail polish, or perfume. We had to dip our tooth brushes in peroxide and baking soda for awhile. I told her that my dad was abusive. I told her how I sometimes have flashbacks.

She said that lots of times special needs siblings have issues with addiction or depression. She said that the depression rate of special needs siblings is 50% compared to 6% of the regular population. But she said that the state lacks funding to have programs for siblings because they are ‘normal’. I find that very sad.

I told the doctor that I would be willing to speak to parents or siblings about my experiences. I told her if my story could help a couple others who are struggling, it wouldn’t all be in vain.

That evening, they left the kegerator at our house promising to get together soon to pick it up.

The next day I apologized for being so candid. I told her that I don’t usually share personal things with complete strangers about my life (outside of this blog). She told me that she was honored that I shared my story and that for everything I’ve been through it’s surprising that I am a solid person. (She also said she would be sending a bill which I hope she did not mean!!!).

She said that she was planning on finding a way for me to share my story of hope with others who are struggling. I’m not sure if anything will come of it or not.

I’ve always felt like my purpose is to help others…to write about it…to speak about it…

God works in mysterious ways…sometimes he works through beer.

 

Luke’s visit, part 8

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Over the past year, both Mark and Luke quit drinking. I was a little worried about Mark a couple summers back. One morning he started drinking at the cabin before most of the family woke up. Luke was always a drinker. He knew everything there was to know about beer. Luke was also the comedian. He’s not funny anymore. It’s strange that I felt some sadness at the loss of his role. He always made us laugh which made going through hard times easier.

Luke was upset that our parents did not seem to want to hear what he had to say to them. He told them that he needed to talk to them for him. It wasn’t about him being emotionally supportive for them anymore. He needed this for him to heal. He quit being the comedian not all that long ago. But making us laugh made us feel better, not him.

Luke stripped himself of all coping mechanisms and dove right into the truth. He is relying on God to get him through this. Me, I like to dip my feet in the water and keep my coping mechanisms nearby. Maybe I’m okay with the lies I tell myself until I am ready to face the truth. What is wrong with that?

Mark played the part of the invisible middle child. He had an important role too. He was the one who advocated for my dad when my mom packed up the car with her stuff and was ready to leave. He kept the family together.

I played the part of the caregiver/counselor. I was always the ultra responsible first born. This has been my role since I can remember. I think it is going to be hard for me once my kids all leave home. I cared for my autistic brother Matt since I was a little kid. I still was his caregiver after my children were born up until he started acting violent towards them. Then I had my own family to care for.

Luke asked my husband how I cope. Paul told him that running helps me cope and it does. I don’t drink to cope. I could never let anything control me. But is that really true? I like to work and keep busy at all times. Perhaps that controls me since I can’t ever seem to relax. But how can working be a bad thing? What if my coping mechanisms aren’t unhealthy? Who can I hurt by having a clean house, etc?

I like to write about my experiences. But on the days when I write about the most difficult times, I feel very depressed. Paul said that although writing seems good for me, maybe I need a counselor. But I stubbornly resist the notion of anyone helping me with anything. I don’t want help. I don’t think I need it right now. I want to work through this on my own.

I will be okay. I am healing. But it is not always a beautiful process.