Autism

Modesty, or lack thereof

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Have you ever seen a 350 lb man mowing the lawn in a Speedo? That would be my dad. He was never much for clothes. I suppose we were lucky that he tromped around the house in underwear versus nothing at all. He is the eccentric man who goes out to eat in pajama bottoms. If you come over unannounced, he would answer the door in his underwear. He didn’t care if people were over. Mom had to remind him to close the door when using the bathroom. Nudity really wasn’t a big deal, it was natural. Almost normal growing up. If you could call how I grew up normal in any way. 

My mom was more modest. She had really bad varicose veins and still does after surgery. She said that 30 hours of back labor would do that to you.  I guess I am lucky to have had 3 c-sections. After 30 hours of labor, my brother Matt entered the world with a broken clavicle bone. Talk about intense labor. My mom would always wear pants in summer. If she wore shorts, she would wear nylons under them so no one could see her “ugly” veins. 

When my autistic brother Matt hit puberty, he had some modesty issues as well. He would often stand at the end of the driveway and expose himself to whoever went by. My grandma had 2 little girls that lived next door. Any time they were around he would drop his pants and wiggle his penis at them which elicited lots of giggles. You probably now understand why I do not embarrass easy or why I never had a lot of friends over growing up. Yes, my brother exposed himself to a couple of friends while my dad waltzed around in his underwear. To make matters worse, Matt would traipse around the house in an old bridemaid’s dress of my mothers. After complaining to my mom about this, she said who is he hurting and just let him. 

On the flip side, no one cared what I left the house wearing. Short mini skirt, no problem. Sometimes I have to ask my husband. Is this too short? Is this too low cut? 

Since I also helped with Matt’s care, part of that included showering him. While other college kids were out partying on a Saturday night, I was showering my brother. Did I mention that he refused to wipe himself? He has tactile sensitivity to toilet paper and napkins. He also will not aim himself while peeing, which created a messy bathroom. Mom always told visitors that the condensation from the toilet was causing the leakage. It was a good possibility that if you got up in the middle of the night to use the bathroom that you would step in pee. And that is why I could care less if my husband puts the toilet seat down. That is probably also why when Aunt Grace needed showering and diaper changes when she got old that I showed no hesitation either. What is normal? I am still trying to figure that one out. 

My mother, my heroine

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My mother’s life has been anything but ordinary. She was born prematurely in a foreign country. Despite my grandmother taking medication to prevent premature labor, my mother arrived early at a hospital in the Panama Canal Zone, after my grandma flew several hours to see her husband who was stationed there in the Navy. She weighed 4 lbs and stayed in an incubator for a month. This was in the 1940’s and she wasn’t expected to live. 

My mom grew up in a rural community and met my dad in a one room schoolhouse. Her family was poor and she spent most of her summers picking cucumbers for a local factory to help support her family. She didn’t have a lot of time to play and had one doll. As a teenager, her mother died after delivering her eighth child. My mom was in college at the time and spent her weekends helping take care of her 6 younger siblings. My dad went off to Vietnam. He came back a different person. College finals were cancelled due to war protests and bomb threats. 

My parents eloped. My dad went to work on their wedding night, my mom cooked for their sponsors. The night ended with freezing rain. My mom wondered if she made a mistake. My dad started drinking a lot. He was depressed and sat around with a gun in his lap staring off into space. He was going through PTSD after Vietnam. He drove a tank in the war and one day all of his buddies died in that tank. He was the only one that walked away unscathed. He became abusive and mean. My mom wondered if she made a mistake. My mom got pregnant with me. When I was a month old, a tornado was headed towards the trailer park we lived in. Sirens blared, it was time to take shelter. My dad just sat in his chair and stared. My mom decided it was time to pack up and head back home, they were hours away from family. 

My parents lived with my dad’s parents for 2 years while they built a house and started a new life. My dad stopped drinking. My mom got pregnant again. They moved into their new house and planned on having 2 kids. Their plan for 2 kids ended up turning into 4 kids within 5 years. Their second child was violently autistic. My parents fought constantly. My mother wondered if she made a mistake. My mom was very beautiful with plenty of opportunities to leave my dad. A best friend’s husband wanted to plan a hook up with her up north. No one needed to know. Another friend’s husband kissed her. I just found out about this and he was a great guy. Guess who I ran into right after she told me? Other men pursued her, but she ran away from them instead of running away with them. That was one of my mom’s greatest strengths, staying committed to a marriage she was miserable in. This is such a rare quality nowadays.  It is hard to live up to parents who have a wonderful marriage. It is even harder to live up to a parent sticking with it when given ample opportunity to leave. 

My mother was the family breadwinner. She is still working full-time at 67. She was emotionally strong when faced with many difficult life situations. She was there for us when my dad couldn’t take it. She has patience when others have none. She is a hard worker. She handles difficulties with ease. She has been an anchor through all of life’s storms. I am proud and honored to have her as my mother. What a blessing her life has been to me and many others. She has been a lifelong advocate for the disabled and their parents. She has helped many with her empathy and compassion. She has been very generous with the gifts she has been given. She is one strong woman. 

Happy birthday, mom! I love you. 

What happened after….

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Almost two years after the birth of Angelique, I had another baby. A little boy that I will call Alex. Alex was an easy baby. He was always content, rarely cried, and followed a very consistent feeding and sleeping schedule. Both babies slept through the night at around 2 months even though I nursed them. I figured I had this parenting thing down pat. Life was going fairly smoothly for awhile. After those first couple of years of peace, life got a little dicey. 

After Matt attacked Angelique on her 4th birthday, life got a little crazy. My mom couldn’t accept that I needed a break from my violent autistic brother for awhile. She pleaded, pressured, and begged to have Matt in our life again. She would drive over a couple of times a month just to have Matt wave at my kids through the car window. She would help out if Matt was included. I couldn’t risk my 2 and 4 year old being hurt by a grown man. I couldn’t. Matt almost exclusively attacked little girls. It wasn’t long after this that I found out I was pregnant and having a baby girl. I didn’t want to tell anyone the sex of the baby, so my mom figured out it was a girl or I would have said something. 

Right around this time, I started babysitting for the neighbor girl about 50 hours a week. She started calling me mom and hanging out with us when I wasn’t babysitting. Every weekend she would stay at her grandma’s while her parents partied. I secretly resented them for having a break. I can’t say that I didn’t feel relief after they eventually divorced and moved away. Also, during this time my husband had started a business on the side. He was working for another company and went down to part-time so he could do this. He eventually used up all of his vacation days and they gave him an ultimatum. Either come back full-time or leave. He left. The stress started piling on again. 

When it came time to schedule my final c-section I opted to do it on a Friday. I had images of watching my other 2 kids while I was in the hospital if it was on a Monday like they suggested. My mom came early Friday morning to watch the kids, thankfully Matt did not get up that early. Arabella was born. Paul went to work. He was a one man show and we had bills to pay. Mom dropped the kids off mid morning as Matt had a dentist appointment. Paul had the kids with him off and on at the hospital all weekend. He had someone from church watch the kids Monday morning to pick us up from the hospital. Then my mother-in-law helped Monday and Tuesday. After that I was on my own, less than a week after major surgery with a 4 year old, 2 year old, and a newborn. A newborn that cried incessantly. That didn’t sleep through the night for a year. 

I felt hurt and angry at my mom for leaving me alone when I needed her the most. Matt always came first. I gave up my childhood for this? In my mom’s defense, she was working full-time and it was her busy time at work. Matt still lived at home and she no longer had my help. Six weeks after Arabella was born, my grandma had open heart surgery and for some reason I was handed the baton of throwing all of the holiday parties. I ended up getting mastitis twice and blamed myself for having a difficult baby because I was very stressed. 

Real life Tetris 

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What is easier, training for a marathon or blogging about painful events in my life? In analysis, they both take approximately the same amount of time per week. I would say, without a doubt, that training for a marathon is much easier. I only feel tired and perhaps physically sore after running. I feel tired, sometimes upset, depressed, and emotionally sore after blogging. 

Is there anybody out there? Am I all alone? Where have the other siblings of the disabled gone? Have you escaped? Have I not? How can I? Why can’t I? I don’t want to do this anymore. It is too personal. The feelings are too raw. I am picking away at old poorly healed scabs. This worries me. 

I feel very overwhelmed in general. I was just notified of mandatory practices for my kids at school the next couple of weeks that conflict with other mandatory practices. When do I have time to work? What about work? We are picking up our biggest client ever the end of this week. It is great, but overwhelming. Will I be able to perform? Will I be able to handle the work? I feel like I am playing Tetris right now. Pieces falling haphazardly on other pieces and nothing fits. I am fighting to stay in control. I worry about the things I can’t control. Am I all alone?

Up north, part 3

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This past weekend I was up north with my daughters. Luke’s wife, Emily, and I threw a bridal shower for Mark’s fiancé, Carla. This is the start of another strange happening this month. Emily recently had surgery and was having some health issues related to this. She ended up driving herself to the closest ER an hour away from the cabin after a sleepless night. I was running later than I wanted to the morning of the shower and had a lot of errands to run. Through a series of strange events, I ran into my sister-in-law at the pharmacy in the middle of nowhere hours from her house. My daughter rode back with her to the cabin to help keep her alert. It seemed like a bizarre coincidence and I still don’t know why things happened that way. 

It was lunch time when we all got to the cabin. Luke bought some bread to make sandwiches with the peanut butter that was there. First, he had to call our mom to make sure that this was not Matt’s peanut butter. I had almost forgotten about this very basic rule. Most of Matt’s food was labeled with his name. You did not dare eat Matt’s food without facing the wrath of my mom. Since he spent most of his life gluten and dairy free, his food a lot of times was separate from ours. If Luke put the knife in the peanut butter and touched the bread, then it would be considered contaminated. My dad would eat Matt’s food a lot of times probably just to piss off my mom. She would worry endlessly about food for Matt to the point of obsession. 

Another thing that happened, the last time we were up north my brothers put in an A/C unit. It was really hot this weekend so we were running it with a lot of fans. We had 13 people sleeping in the cabin. Matt came out to the porch angry saying that the fans were too loud, that he couldn’t sleep. My initial response was to ask Matt how long he was trying to sleep. Luke agreed. Mark was concerned that Matt would be up all night worrying. Mom went with Matt to turn off all the fans. Now no one would be able to sleep. Luke turned the fans back on after Matt fell asleep.  Luke said, “Part of this is his condition and part of this is his conditioning.” Matt never had any consequences, seems like we all had the consequences for his decisions. I felt the familiar old resentment towards my mom for allowing Matt to be the god of our lives. The god we sacrificed to day in and day out. Sacrificing the good of all for the sake of one. I hated being forced to worship and kneel before the alter of autism. 

The bridal shower went without a hitch. Haha. The future bride left saying, “See you at the wedding, if there still is one.” Mark and Carla spent most of the weekend fighting. Everyone at the shower said that Mark and Carla reminded them of my parents. That is not a compliment. My parents marriage is filled with strife. It is not something sacred, to be yearned for. I worry. My husband says I should only worry about the things I can control. 

A driving controlling fear

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Mom is a good driver. I usually feel safe when she is in control. My dad likes to drive really fast. He says that we don’t have to wear our seat belts. I feel safer when it is on especially when we go over bumps and my head almost touches the roof. Bumps always make the seat belt tighter around my waist and I have to take it off to loosen it. I think that my dad learned to drive from Aunt Grace, except she drives really slow and goes through the stop signs. 

When mom drives she has to be careful. If she puts Mark and Luke next to each other they like to laugh and do funny things while she is driving, like open the door. The day it happened she wasn’t being careful. She put Matt in the seat behind her and she was wearing a ponytail. Matt likes to pull hair, sometimes very hard. I worry that Matt might pull her hair so hard that her head will go back and we will go off the road.  I am sitting in the back with Matt. Matt starts pulling mom’s hair. Gentle tugs. 

Matt pulls mom’s hair. It is loud in the car. Tug, pull. It is hot, the windows are open. It is loud. Tug, pull. Cars are coming down off of the highway. It is hot! Mom drives through a red light. It is loud, hot, a long ponytail of hair!  Mom keeps honking her horn. Loud, loud! Cars slam on their brakes and swerve. 

My little brothers giggle and can’t wait to tell everyone that mom ran a red light. “Did I just run a red light?” asks mom. “Oh my gosh, I could have killed someone.” Mom is upset and pulls the car into an empty parking lot. Matt is upset and runs away towards traffic. Good thing mom was able to catch him before he reaches the busy street. Mom is a good driver. Mom needs control. I need control. 

Fear tires

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A strange car pulls into the driveway. Inside an elderly man and a woman about my mom’s age. The car is shiny and new. The man drives. Matt is afraid of the tires. Mom says it is her old college roommate. Matt screams and kicks the tires. The man and woman stare out the window at us. Matt screams and throws gravel at the car. Mom tells them that her life has changed and it would be best if they leave. Matt is uncontrollable. The strange car backs out of the driveway, never to return. Mom cries for a long time. 

Losing my best friends

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I lived in one of “those” houses. You know the one. It was a house that a lot of my friends weren’t allowed to go to but I was always welcome at their house. I was invited into the popular group for a little while but that didn’t work out too well for me. I had an issue with conforming to narrow and limiting group norms AND I lived in one of “those” houses. I did have a best friend in high school I will name Shelly. Her parents only let her leave the house to go to school and to walk down to the store to buy them cigarettes. My second best friend was Mary and she was one of 13 kids in her house. Her parents didn’t seem to notice if she was home or not. So this worked!

When Shelly was 17, she was allowed to come over to my house once. She got home an hour late that day. By the time I took her home, the police were there because her parents listed her as a runaway. Shelly was one of those quiet girls that never got into trouble. When she turned 18, she moved in with us. My mom didn’t charge her rent because she didn’t have a job. She did have to help clean the house, which was no easy task because my parents are practically hoarders. At 19, Shelly got married and I was her maid of honor. 

Shelly was having a hard time finding a job right out of high school. My mom got her a job as Matt’s teachers aide. After 3 years of being “kicked out of school” for his violent and aggressive behavior, Matt was transitioned back in. He still was angry and would lash out if forced to do schoolwork. At this time, I was going to college and was roommates with Mary. I was soon to meet my future husband who lived in the apartment below mine. 

Over time, Matt was still having issues in school. He kept attacking Shelly and pulled her hair. Matt’s teacher convinced Shelly to press charges against Matt because he didn’t have any consequences for his behavior. The next time Matt attacked Shelly at school, she called the police. The police came to the school and arrested Matt with the charge of assault. At this time, I was engaged to Paul. My mother was devastated as she picked Matt up from the police station. I was torn between my best friend and my family. Mary was torn between Shelly and I. It was a big, fricken mess. 

After several months of legal issues, Matt was found incompetent to face the charges brought against him and they were dropped. He has the mind of a 7 year old. He does not read or write. He can’t do simple math. I lost my 2 best friends. They didn’t come to my wedding. That is why, parents, you should not have your child’s friends be caregivers! It was a very hard time for me. I haven’t talked to Shelly in almost 2 decades and Mary for at least a decade. People sometimes ask me if I have any friends from high school. Did you just drift apart over time? Yes, it was something like that. 

The cure for autism, part 9

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It started out the way these things usually do. My contractions were 2 minutes apart. I was due on my birthday and it was that week. The contractions didn’t lead anywhere and neither did the pitocin induced labor. I left the hospital the next day with an empty car seat. The nurses joked on my way out that they would see me later that day. Didn’t happen. 

The following week, I made it in to my appointment. I was now a week overdue and the doctor said it looked like a big baby. They scheduled to induce me again early the next morning. Another day of pitocin induced labor with no results until they broke my water. But they wouldn’t break my water until what seemed like 10 medical students got to feel my cervix. Then started the 2 hours of pushing without the urge to push. The baby never made it into the birth canal and was showing signs of stress. Stop pushing your baby could get stuck in the birth canal, sign these forms, and off to the surgical room. Seventeen years ago today ushered in the birth of Angelique Hope, 8lbs 13 oz. 

My mom said that this baby was going to finally pull Matt out of himself, a new cure for autism. Matt was an uncle for the first time. 

I graduated from college in May, got married in August, and was pregnant by October. After a fruitless job search, I decided to do what I did off and on for my whole life, be Matt’s caregiver this time with Angel. My mom and Matt became obsessed with Angel, the only difference was Matt’s obsession was dark.  Angel grew into a beautiful and happy little girl. I should have seen it coming, but I was blinded by optimism. 

It happened on Angel’s 4th birthday at her party. Angel wanted everyone to watch her dance around and sing. Matt said, “Everybody watch this” and proceeded to grab Angel’s arm and start twisting. Paul and Luke had to struggle to get Matt off of Angel. My mom was screaming not to hurt Matt. Luke took Matt home. Matt muttered to himself for hours, evil laughter and delight that he obeyed whatever voices where telling him to hurt her. Thankfully, Angel was not seriously hurt. 

I had now entered the second most difficult period of my life. After this happened, we decided to cut Matt out of our life for awhile. I couldn’t stand to watch my own children get hurt the way I was. This also cut my mom out of my life because Matt still lived at home and they were always together. For a period of about five years, I lost all support from my family and felt very alone. 

Still no cure. 

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.