childhood

Allergy sufferers

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This morning my blog friend LA wrote a post that really hit the nail on the head for me about allergies. LA was on a train and sat next to a woman who said she was allergic to LA’s perfume. LA got up and moved seats. But should LA have catered to the allergic woman or should the allergic woman offered to move? Whose shoulders does that responsibility fall on?

All my life I had to cater to my autistic brother’s allergies. He would become violent if he was exposed to allergens. That is what I was always told and that is what I always thought. But as I have been writing my book, in retrospect I have been able to see the situation with my blinders off.

It’s not that I don’t believe that Matt has allergies. I find it hard to believe that allergies could cause someone to act violently towards another person. He doesn’t sneeze, cough, or break out in a rash. It is possible that an allergen could cause a physical symptom that causes him to be irritable and lash out. But I no longer believe that smelling someone’s perfume could cause him to be violent.

Matt acted violently because he was severely mentally ill. He needed to be told that his actions were wrong whether he was capable of controlling them or not.

Meanwhile, we did crazy things to cater to Matt’s allergies. I wasn’t allowed to wear perfume. My parents got rid of their wood stove. Newspapers weren’t allowed in the house. No one was allowed to park in the garage for awhile because of auto exhaust fumes. My parents replaced their new curtains (new smells) with old blankets. We had to evacuate if the neighbors were spraying their fields. There were many other things as well that were very inconvenient and extreme.

But, guess what? With all of our catering, Matt was still violent.

I don’t cater to everyone anymore. It was hard at first since it was so ingrained in me to do so. Now if I host a party or holiday and I am expected to do all of the preparation, I make what I want and tell people if that doesn’t work for them to bring what they can eat for themselves. Believe me I’ve tried and I just about went crazy. This person is gluten free, the other is dairy free, another black pepper free, pork free, organic only. I wish I was kidding.

I’ve learned that the best way around it is to tell everyone what I am making and if that doesn’t work for them they can bring their own food (or host the party themselves!). I’ve made peace with the fact that I can’t please or accommodate everyone.

I do feel bad for people who are miserable from allergies. But it is also inconsiderate to  expect others to cater to you if your allergy is not life threatening.

Outrunning my demons

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Arabella skipped school today. She was very upset and was crying this morning because she did not get cast in the next community theater show.

For some reason, it brought back memories for me of the time I tried out for a community theater show when I was a couple of years younger than her. Maybe it’s just because I am almost to this point in my book.

I remember sitting outside in the sunshine with other children that summer working on my lines. I got the part of a princess. I was a pretty little girl with the sun hitting my long golden hair. I was happy and excited about my part. It made me feel like I really was a princess.

But something went wrong. My brother Matt had to spend the summer in the hospital. I had to drop out of the show because my brother was really sick. (It took me 20 years to audition for another show).

After that, my whole life changed. My brother became home bound after getting out of the hospital. I saw the paperwork for that yesterday. The original paperwork gave him a period of 2 months to be educated at home. But he was home bound for over 3 years. My mom quit her job and pulled my other brothers and I out of school as well. It was the time of the great isolation. Few people were allowed to come in and we rarely went out.

I am making excellent progress on my book. I try to work on it several hours every day. There are usually one or two days a week when I cannot. Right now I am over 30,000 words and am nearing the halfway point in my story.

I’ve decided to title my book ‘Outrunning my Demons’ with the subtitle of ‘What Life is Really Like with a Mentally Ill Sibling’.

I know my daughter is very disappointed right now that she didn’t get a part in the show. I feel bad for her. But in a few days she will be on to something else. She probably won’t even give it another thought a couple months from now. But I will always remember the summer, over 30 years ago, that I could no longer be a princess.

Depression

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As I was getting ready for the last show, I saw a car pull up to the theater long before the show started. It was a navy blue car, the same color, model, and make as my dad’s car. The passenger door opened and a very large man struggled to get out of the car with a cane. He had his head down, but I could see a mass of white hair and a long white beard.

I knew my mom was coming to the show. But was my dad? Would he finally tell me that he was proud of me? The man looked up and I realized that he wasn’t my dad. I felt sadness for what never was and what probably will never be.

Depression, it hit me the hardest in my late teens and early 20’s. As I mentioned before, my childhood was the hardest period of my life. My brother Matt, who is less than 2 years younger than me, had some very serious health and mental health issues. He was violent towards me, towards others, and to our pets. He hit me, pulled my hair, and clawed my arms on a regular basis. I think he killed my cats. He threatened to poke my eyes out with a knife. The list goes on…seriously, just read the book once I finish it.

My dad was depressed too. He withdrew from the family. When he was home he would sit on the couch and ignore us while watching TV. If the house was too quiet, I worried that I would find him dead somewhere.

My dad is the most pessimistic person I know. His life mottoes are ‘sh!t happens’ and ‘life’s a bitch, then you die’. He never hugged us or told us that he loved us. We never had father-daughter ‘dates’. Nothing. Instead he told us that we were stupid and laughed at our feelings, dreams, and fears.

I consider myself a realist, which probably is just a nice way of saying pessimist. But I will never be like my dad. I will never tear someone else down to lift myself up.

My dad is everything I don’t want to be. He never took care of himself. He ate a lot of junk food. He never exercised. He weighs almost 350 lbs. He hasn’t brushed his teeth in years. He hasn’t showered in almost a year. He is lazy and hates to work. He doesn’t clean up after himself and is a hoarder. Once one building is full, it’s time to build another shed. He doesn’t finish anything he starts. My parents built their house in the 1970’s and the upstairs bathroom still has not been finished. Simple repairs lie in disrepair for years. He is even too lazy to bother getting dressed if he doesn’t want to.

Maybe that is why I do everything the opposite. I eat healthy, run marathons, can be a workaholic, try to maintain a healthy weight, get things done right away, and am a clean freak. I don’t like things that he likes just because he likes them. But the truth is, I am still his daughter. I can’t hide from that.

In early childhood, when my dad emotionally checked out, I was called up to the plate. I started trying to fix the problems at home. Nothing was kept from me. I was handling responsibilities that no child should have to handle.

A 6 year old should never have to watch her 3 younger brothers in the lake even for a few minutes. My youngest brother almost drowned that day.

A 13 year old shouldn’t be making the call whether or not the neighbor should come over and put our dog out of her misery when she was suffering a painful death. I made the wrong call and I have to live with that.

A college student shouldn’t have to help raise 3 teenagers. But that is what I was doing.

I home-schooled one year of middle school and two of high school so I could help my mom out. Even though I attended college in the drunkest city of the United States, I never went to a single college party. Most Saturday nights you could find me at home helping shower my disabled brother. Then I graduated from college, got married two months later, and right away started a family of my own. At times I feel like I am suffocating.

Sometimes I yearn to be the child I never was. In some ways, my kids are older than me. I gave them everything I didn’t have. The pendulum swung too far to the other side. I only told them the things they needed to know. I only let them be kids. I gave them few responsibilities and chores. I shouldered that responsibility so they didn’t have to. I was wrong. I realize that now. But how can we be functional parents if we both had nothing but dysfunction to model from?

I get depressed when I have memories of the horrible things that have happened to me. The PTSD depression is the worst I’ve ever experienced. Burying my painful feelings in the moment is a future time bomb. The feelings I’ve repressed have a way of coming out tenfold. The depression from that is intense and irrational. The urge to end it all is hard to fight. By the grace of God I was able to make it through to tell you about it. I want to say that will never happen again, but here I am stirring up my demons.

I actively mourn the childhood I never had. There is something joyous and magical most people experience that I’ve never had. It is utterly devastating. I don’t know if I will ever be able to get over it. It is the kind of depression that no pill can cure.

My life is everything I’ve ever wanted it to be now, yet somehow I cannot outrun the demons of my past and find peace.

 

 

 

 

 

 

Going home

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Today my mom and I went to see Matt for his birthday. He spends the day at a program for autistic children and adults. While we were there, Matt’s caregiver asked him to tell us about his special morning in a high pitched sing song voice reserved for a small child. Everyone was optimistic and cheerful, except me.

I felt such sadness I could cry. My brother should be meeting up with his friends for his birthday, or maybe going out to eat with his wife and children after driving home from a long day of work. His normal isn’t right.

I feel such grief every time I see someone with a developmental disability, especially my brother, that I don’t want to be there. I feel guilty for visiting out of obligation. Visiting makes me think about the families and all of their lost dreams. He shouldn’t be putting stickers on a chart for good behavior, he is a grown man. It shouldn’t be that way, but it is.

I feel tired today. I slept good last night. But the night before was restless with nightmares. I was triggered by the developmentally disabled girl backstage. I heard people ask her sister what was wrong with her. I remembered all the times I was asked that about my brother. I got sick of explaining after awhile. They never asked about me.

Then I dropped my mom off at home. I went in and said hi to my dad. He didn’t get many birthday cards or calls this year. I wonder if it will be his last. He looks so old and weak. He rarely leaves the house. No one really cares about him much anymore, certainly not my mother. I want to reach out and help him. But he was a very cruel father. Why should I care? Why is it so painful to see the consequences of his bad choices when I was one of the people he hurt?

I walked through the house. There are still clothes from the 1980’s hanging in the closets. Hoarders. Piles of mail on the table. The same linoleum lies on the floor from my childhood worn with holes in it. Bags full of food line the floor. Dirty dishes clutter the counters. Nothing must be thrown away, but much more to be collected.

I feel depressed. But writing about it makes me feel better. I am starting to process how I feel and why I feel the way I do. I feel sad that my family is broken and nothing I do can fix it.

On the way back home, I drove through town and did not avoid it by driving through the outskirts. I drove by my Aunt Grace and Uncle Harold’s house. I drove past the area where my grandparents lived. I remembered how the town looked when I was a child. It was alive then with parades and festivals. But now it is a ghost town. Small town businesses closed. New houses stand where old homes once stood.

Everything has changed. But I still remember how it used to be back when my aunt, uncle, and grandparents were still alive. The town was alive then and that’s how I want to remember it with my loved ones alive in it. But that is not how it is anymore.

That is what it is like going home. The broken things still have not been fixed. The town and relatives that made my life magical as a child are no longer there. Emptiness.

Writing helps me process the way I feel. I think I understand why it is so hard to go home. Maybe you would feel the same way.

 

On writing

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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 10: Make peace with the past

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For a long time I’ve outrun my demons and wondered how they could still catch up to me.

Writing this blog has been a great first step in making peace with my past. If that wasn’t enough, I started writing a book. I’ve found the process to be very therapeutic.

In a few months, I will start the process of public speaking about my experiences.

In doing all of this, I realized that I missed a very important step. I need to be open and honest with the people that care about me even if I get hurt. It’s not like I didn’t get hurt in the past and move on with my life.

I spent my whole life pretending to the outside world that everything was alright in my life. Life is good now. But I want to be able to tell people I am close to that things are not alright if they aren’t. I want to be able to ask for help instead of pushing everyone away and dealing with things myself.

Right now I’m trying to look back without having blinders on. Hindsight is not always 20/20. Sometimes I tend to wear sunglasses when I look at the darkest days. I make excuses and cannot face things as they truly were.

I tell myself that what happened in my life was completely normal. It wasn’t that bad.

Sometimes I think I will just be able to throw all of my painful memories into a book, then close the book and walk away. I’m not sure if I will ever be able to do that. But I do think that my story could help others and that I will be able to make peace with my past.

Geez, sometimes I wish my goal was to lose 10 lbs. Revamping myself on the outside sure seems a lot easier then stoking the demons within. But I feel like this is what I was meant to do.

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.

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.

 

 

Is it normal?

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I imagined the way it would be in my mind. Thick heavy intricate snowflakes dropped with a plop on the cold empty ground. There were horses with jingling bells pulling a sleigh behind it. Hot chocolate stirred with a candy cane. It’s a picture of us trying to find that perfect tree. Even the boy with the face tattoo is there. He is the one taking the family picture of us finding that perfect tree. A ray of radiant light shines through the snow on the right one. We are all smiling and happy.

It wasn’t that way at all. It was raining and the kids had other plans. Paul ran out to the closest tree lot by himself and picked out the tree. But it was that way once. The problem is that I still expect it to be that way now. I spent some time that afternoon crying curled up in my bed playing lullabies that I once played for my babies. Is that normal?? I am off my rocker, literally and figuratively this time.

Is any of this normal?? Paul and I have been struggling lately with this very concept. This will be the last Christmas break that our whole family will be together. Angel is not planning on coming home after college this year. Alex will be graduating (hopefully) this spring and moving on. Arabella is still seriously interested in becoming a foreign exchange student.

I put a lot of time into this whole motherhood thing, and now my kids don’t need me anymore. Who am I now? I am excited to have time to myself to do the things I always wanted to do. But I never thought that the letting go process would be so painful.

Our son is really struggling right now. Although he is 18, we still have boundaries and rules because he is living in our house. We have been asking ourselves if his behavior is within the realm of normal. It was hard to let go of our firstborn, but she was heading off to college and we knew that she would be okay. We feel unsure about the future of our son.

There are really only two scenarios. Our son is completely normal. Then the problem is with us. We need to let him go even if he has to fall on his face a few times. He has to figure things out for himself. We need to let him go even if his future isn’t what we planned on it being.

The second scenario is a bit more troubling. What if he has mental health issues? Then I think it is our job as his parents to make sure that he gets the help he needs. But he is an adult. Is it our job to try to fix him?

Would you try to save someone from drowning if you knew that they knew how to swim??

I think that our son is normal. But what is normal? People have been asking us if he is depressed. I don’t think so. But I’m not sure. I want answers. I want to be guaranteed that he will be okay.

Letting go of a kid to go to college is normal. It is painful, but you are also happy that they somehow became fully functional adults with you as their parents.

But what happens if you think they are not ready yet?

This has been my struggle lately. I probably won’t get all the answers I’m searching for. Plus it doesn’t help that I have unrealistic expectations in my head of how I expect things to be…the way they once were, but no longer are.

Is any of this normal?