Coping

Imperfect perfection

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I was raised in a house full of introverts with the exception of Luke. At one time that probably made Matt’s bizarre behavior all the more shocking. Anything could set Matt off so we had to make sure that anything didn’t happen. We had to tiptoe around the house in a whisper, no loud music and absolutely no anger was allowed. Anger was wrong. But that didn’t seem to stop my parents from arguing when they thought we were asleep at night or before we woke up in the morning. Matt was the burner on high underneath my pot of water. Just when the water was rolling and coming to a full raging boil, the lid was forced on. Sometimes a little steam would escape, as from a tea kettle, but never before a full roaring scream could be issued. The hot water stayed trapped inside making my blood boil. It was a long time before I learned that feeling angry was ok. When I finally opened that spout, I boiled over with anger for a long time. 

I also had to be perfect. Completely, inhumanly perfect. When Matt hit me I was not supposed to strike back or feel anger. I was lucky to be normal. Lucky! I got in big trouble when I struck back, but Matt was never once told that what he was doing was wrong whether he could control it or not. When my grades dropped in grade school, my dolls were taken away for a semester until I was perfect again. I couldn’t play piccolo in middle school because it was so high pitched that people could hear if I made a mistake. The same thing with singing. But this perfection was not just imposed on me. Mark had to be perfect and so did my mom herself. We all knew that my dad, Matt, and Luke were flawed. 

For example, Mark put his hand on his girlfriend’s knee and got in trouble for that. Luke stayed out all night with his girlfriend and never even bothered to call. He did not get in trouble. I asked my mom about this unfairness and she said she expected more from Mark. I became judge over Mark and Luke. Most of the time I sided with Mark which caused fighting with Luke. Luke and I got in a big fight which wasn’t allowed. My mom tried to stop us. I retorted with, “Why should I stop fighting with Luke when you and dad fight all the time?” But most of the time our house was filled with silent rage and imperfect strivings toward perfection. 

The cure for autism, part 8

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Biofeedback.  Matt was obsessed with little girls. He could hear the high pitched voices of their teasing and laughter on the grade school playground. Their mockery and teasing played like a recording over and over in his head for over a decade. He also heard voices in his head to hurt little girls. Since I was the only little girl around I was most often the target of his attacks. He pulled my hair, scratched up my arms, and swung at me with a closed fist to the upper arm sometimes on a daily basis. My mantra while enduring this was that every bruise or scar was going to make me stronger. Believe me, it has made me a stronger person mentally and physically as a marathon trainee. 

Eventually I did what most little girls do, I grew up. I became my brother’s caregiver. Parents, a strong word of advice, this is a bad idea! It is also a very bad idea to have your children’s friends be caregivers too. Another blog, another blog. I grew up but Matt didn’t. He was still fixated on hurting little girls. Mom found a new doctor who was into biofeedback. It involved hooking Matt up to a small machine to monitor when Matt was feeling anxiety. Using biological cues, he was suppose to be able to stop himself before hurting someone. So in the summer I would trudge around the local parks that were full of laughing and squealing little girls so we could hook Matt up to this equipment. I know this was supposed to be a good thing, but it felt so terribly wrong. 

Still no cure. 

Up north, part 2

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The fortune cookie luck that is ordained for me has apparently not kicked in yet. But I did survive the weekend with the whole extended family and the weather was great. If I do get smitten with good luck maybe I would donate a little of it to my mom. She just missed getting hit by a tornado on her trip back home. Maybe she was lucky that she missed the storm, but she was really pushing her luck.  

I was thinking a lot this weekend about coping mechanisms and how they change over time. My brother Mark seemed to cope with being around the family by drinking. I woke up early on Saturday morning and came out to sit by the fire at 6:30 AM. Mark was on his second beer by then which concerned me.     Other than that, he seems happy. He recently got engaged and is planning a fall wedding. His fiancé is good for him, I hope that he can bring out the best in her as well. I just worry about them. Mark is so much like my dad that I think being a husband and father will be challenging. It can be challenging for the most patient people in the world. I hope and pray that if there is any genetic factor involved in autism that any future children will not be effected by it. 

Luke has two little girls ages 5 and 7. I watched them play in the water, remembering when I was right between their age and watching my younger brothers in the water. It really gives me perspective on how young I was when given great responsibility. Luke worries that his kids hate him because he is a perfectionist who demands perfection. Luke is a great dad. I sometimes feel like my kids hate me and I don’t demand perfection. I don’t demand much of anything. I want them to have something that I didn’t have, a childhood. 

I felt like I could really relate with Luke. We are so much alike as adults even though we coped with life in totally different ways in our youth. The pendulum took us from our extremes to a common middle. He is no longer the party animal. He is serious and thoughtful. I came out of my shell. I no longer feel a lot of anxiety about spending time with the extended family. I am hoping that we can finally forge a relationship. 

Dogs, part 1

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I remember the first day and last day the best, everything else is a blur of white fur. My parents and brothers came to pick me up from my grandma’s one evening after being at a birthday party of a little boy who had severe cerebral palsey. I opted out of going to the party because the previous year this little boy’s older brother decided to take me out on a little adventure which involved me getting lost in the woods. We trudged through the woods for hours, he knew his way back but I didn’t. He made me carry “dinosaur bones”, basically any old bones he could find, back to his house. If I didn’t carry those bones, I didn’t go home type of arrangement. Needless to say, I stayed at grandma’s house the next year. Mark came in the house to get me exclaiming that we now have our first dog. I didn’t believe him at first. It was dark out when I peeked into the car. Sure enough there was a big white dog in there. She was a stray named Whitey. The friendliest dog ever. 

The last day started like any other. It was a Saturday. I volunteered with grandma, Aunt Grace, and a few other older church ladies at the thrift shop. They always had me running the cash register. I don’t know why because I was only 13. Grandma said that if anyone wanted me to take their items out to their car for them that I needed to have her do it. Something about that not being very safe even though I was old enough to run the cash register. 

There was a problem with the dog when I got home. She was having a hard time going on her daily walk with mom. Mom said that Whitey probably drank the milk she set out for the cats. Her fur was matted up on her backside and she couldn’t go to the bathroom easily. Mom gave her a bath and trimmed her fur but she did not get better. Mom and I took her to the vet. The x-Ray showed that her intestine twisted. At this time, we made a horrible mistake by taking our dog back home. 

Afternoon turned towards evening with no improvement. During this time, I received a call from a girl named Ann who was a homeschooled. (This happened during our three years of being home bound after Matt got kicked out of school for his violent autistic behavior). Ann called to tell me about her trip to Australia that they just got back from. Sorry, gotta go, my dog is dying here. Can’t hear about your wonderful vacation. My mom, brothers, and I sat next to Whitey for the next several hours. Dad checked out and was watching TV. I am going to spare you the details here, but trust me when I tell you that my dog died an extremely painful death that lasted over the span of several hours. A couple of hours in my mom asked me if she should call the neighbor over to shoot our dog. I said, “Absolutely not!” This was a man who shot his cute little Beagle puppy for chasing his chickens. This type of logic is exactly why you do not ask a 13 year old to help make major decisions in the family!

After several more hours and after mom called the emergency vet services to see if there was surgery or anything else we could do, my dog died. I still have her collar in my jewelry drawer today. I still feel pained that I made the wrong decision if I really think about it. I still feel angry that I had to make a lot of adult decisions as a child that I wasn’t ready to make. 

The next morning as mom and I left for church, I saw Whitey laying on the front lawn. The wind was gently blowing her fur. I imagined that she was sleeping and that none of this really happened. I did that a lot as a kid, pretending that painful things didn’t happen. 

The cure for autism part 7

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Drugs! It took a little while to get back to my cure for autism blog. The reason being that I feel a lot of anxiety about this because it will be the hardest cure to write about so far. In retrospect, I am not sure we could have coped any differently. Back in my day we didn’t have blogs, the Internet, or even many books on how to cope with a violently autistic family member. There certainly were not any books written by siblings for siblings. How does a dysfunctional family cope with almost 2 decades of constant stress and daily episodes of violence? We lived in fight or flight mode for almost twenty years! Twenty years!! Doctors could only offer one basic solution to our constant stress, medications to treat our symptoms. Every single person in our household was medicated at one point or another. 

Besides being autistic, Matt had a myriad of mental and physical health issues. He was given several different anti-psychotic medications. Some made him like a zombie, limp like a rag doll. Mom couldn’t stand that. Others didn’t seem to do much of anything or had side effects that were intolerable. One drug made him stiff as a board and he needed assistance doing simple things like walking up stairs. 

My dad had several ulcers. He was impatient, angry, and seriously depressed. I often worried when I came home to a completely quiet house that I would find that he had killed himself. He was distant, dispondent, or storming around the house angry about something. My mom was was always full of worry, anxiety, and self-doubt. Always afraid to make the wrong decision, perfectionistic. Her teeth were constantly clenched. 

Then there was me. Outwardly, I had it all or so most people thought. I turned down the opportunity to have a career in modeling to go to college which was paid for in full by my family. I always had my pick in men. I drove a red firebird in high school. I can honestly say that I had someone pass a semi in the pouring rain in a no passing zone on a two lane highway just to try to get my phone number. Do you hate me now? Most of the other girls did. 

Inwardly, I was a mess. I couldn’t sleep at night. I would go long periods of time  without eating much. Every time I ate I would feel nauseous and my stomach burned. My grades dropped because I couldn’t concentrate in school. I was put on a high dose of amphetamines which did help my ability to focus but was like drinking 10 cups of coffee. I started scratching my skin, picking at scabs, pulling out my hair. I had issues with anxiety, hyper vigilance, and obsessive compulsive tendencies. I was seriously depressed. I was prescribed the highest doses available of anti-depressants. I felt like a zombie, totally numb to all feelings. Some drugs made me sleep 18 hours a day, weight gain, constipation, diarrhea, but nothing made my environment change. I could tell when the medicines weren’t working for me when I had nightmares. I dreamed that cats were clawing up my body or birds were pecking at my skin, my skin crawled. The worst thing that happened was that I was prescribed the highest dose of Prozac and became downright unconsolable. I grabbed a bottle of pills, locked myself in my room, threatened suicide, and ended up spending a couple of days in the psych ward. But I wasn’t the only one in the house thinking of my own demise. Mark was also very depressed and was having problems focusing in school. He would hang nooses in the tree next to our house for my mother to find in the morning. He was quiet in school and at times was a target for bullies because of it. He really wanted the pain to end, perhaps even more than I did. 

Luke was hyperactive and couldn’t concentrate in school. He was always moving around in his chair, tapping his pencil, and annoying the teachers. He was medicated for ADHD. Luke dealt with the stress by partying hard. Sometimes my parents would find him out in the yard in the morning. That was if he even came home at all. 

Still no cure, not for any of us. 

(We are all living relatively happy lives now. I promise I will write about something light and fluffy tomorrow!)