Autism’s sibling, journal 2, part 1

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Back in the late 1980’s, I was homeschooled for 3 years from 8th through 10th grade. This is a time of my life that I never talk about. There is a gap when I talk about middle school and high school. I don’t fill it in. It was a time of great isolation and introspection. As an introvert, I really didn’t mind. It was just difficult explaining the reason that I was homeschooled.

My autistic brother Matt’s behavior was so violent that they no longer allowed him in school. Instead the school sent a retired school teacher out to the house. He was likely to physically attack someone that tried to force him to learn. It took the patience of a saint to handle that job. Since my mom had to majorly cut back her hours at work, she decided to take my younger brothers out of school and homeschool them as well. My mom gave me a choice because I was older. But I didn’t really feel like I had much of a choice. 

In the late 80’s, a vast majority of the few people that were homeschooling were doing it for religious reasons. My mom joined a group of these women. The kids were all a lot younger than me. My mom signed me up for an accredited correspondence school. When two of my friend’s moms heard that I was leaving school, they dragged their kids out of school for a few months as well.

My friend’s mom cited religious persecution as the reason for pulling her youngest two children out of school. But I never thought that was true. To be honest with you, the kids were just strange. Yes, my friend’s older sister read the Bible over lunch period at school. But she was also the girl that I often saw standing in front of the class room blowing her nose loudly. Then she would stand in front of the class while the teacher was talking and pick her nose for another 10 minutes. It also didn’t help that she had red hair, acne, was overweight, had coke bottle glasses that made her eyes look like pins, and had an obsession with math. Her younger brother had similar social issues. The kids on the school bus took a scissors and cut the shirt off of his back. That was because every time someone said gosh or heck, he told them that they were going to hell. My friend, however, was relatively normal compared to her siblings. 

One time while I was staying at her house, someone drove by at night and threw a bottle through their front window. It is unfortunate how mean kids can be to someone that doesn’t fit in. I felt a little sorry for them yet at the same time felt embarrassed to associate with them. Even though Matt was teased a lot, he didn’t seem to realize it as much as my brothers and I did. My friend and I had having outcast siblings in common. Who knows, maybe they were on the spectrum too.

During this time, my mom spent a lot of time with her new friends. We went to Bible study all the time. When I wasn’t with my friend, she was at church or meetings at someones house which was basically church. We even went to church camp together for two summers. We had to wear pants at all times and weren’t allowed to swim. I had the opportunity to visit my friend while we were in Texas last year. I asked her if she still went to church. She said that she didn’t because she spent enough time there as a child to last her a whole lifetime. 

In the home bound years, my mom actively sought support from her new friends by taking an interest in their church groups. We even were able to be involved with the Amish community. I had the opportunity to go to an Amish wedding. How many people can say that they have done that? I think that at one time my mom was ready to leave the Lutheran church. She probably would have if it wasn’t for Aunt Grace. 

Then something happened to bring it all to a crashing halt.

Just small talk

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Yesterday was my dad’s birthday. I always dread calling him for his birthday. I really wish it wasn’t that way, really I do. 

Yesterday evening, I was the first person to call and wish him a happy birthday. I asked my dad if he received any birthday cards in the mail. “No,” he replied. Then we talked about the weather. He said that it was snowing. He said that he was driving but the roads weren’t slippery yet. After a few minutes of ackward silence and small talk, I told him that I should let him have both hands on the wheel. Bye dad.

I wish it wasn’t that way. I know that the time is coming soon when these birthday calls will end. Maybe it was already the last one. I feel sad for the relationship that never was. Although we get along better now than we ever have before, we never had a father daughter relationship that was anywhere near Hallmark greeting card close. I would settle for a relationship that gets beyond small talk.

Some things have been broken so long that I don’t know how to fix them.

How can I sleep??

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Noise! Sometimes I would give anything to be able to sleep.

When my kids were little, I would have given anything to sleep until 8. Now as teens they sleep in past eight. But I still wake up at 6. I try to sleep in, but I can’t. 

Last night my oldest daughter Angelique was talking to her boyfriend on speaker phone while skyping him, sending stories on snap chat, checking her facebook feed, making bracelets, and catching up on her favorite netflix shows. How can I sleep?

My son Alex is the incessant gamer. I hear the taps of the keyboard, the clicks of the mouse, his TV that shows highlights of some gaming competition. He yells into his gaming mike, “No, no, no, what are you doing? I can’t believe you just did that. Are you a newb?” How can I sleep??

My youngest daughter Arabella just got braces this week. She had a sleepover last night with her best friend who also has braces. They spent the evening laughing, giggling, and screaming while slurring through mouths full of metal. How can I sleep???

Paul asked if I wanted to watch a movie with him at 8:00. Sure, why not? Ten minutes into the movie, I am asleep! ARRGgggg! How could I sleep??

Grace uncommon, part 16

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Sometimes I think that Aunt Grace wanted me to like the things she liked. She wanted me to embrace her hobbies, instead I embraced her habits.

When Aunt Grace was sitting, she was knitting or crocheting. She always had a little piece of paper beside her counting her rows. She could look at someone and knit them a sweater in their size. She tried to teach me to knit, but I somehow always ended up with tight little knots.

In reality, I learned things that she tried not to teach me. Grace followed a very structured schedule. She woke up every morning at 6 AM. On Mondays and Wednesdays, she did book work. On Thursday mornings, she cleaned her house. On Fridays, she got her hair done. On Sundays, she went to church. Every week had the same structure. She was not a cleaning freak, she was a structure freak. I love structure.

She always spoke her mind. She wore a black onyx ring on her ring finger, a ring that is now in my possession that I sometimes wear. After eating, she always pulled out a tiny mirror and put dark red lipstick on her thin lips. Who doesn’t like dark lipstick and interesting rings?? Seems like I took on most of her habits and few of her hobbies. If we didn’t get along sometimes it was because we were too much alike.

Grace has been gone for eight years now. A few years after Grace passed away, my brother Luke had a baby girl. They named her Grace. Little Gracie always speaks her mind. She has an uncanny resemblance to Aunt Grace. She always begs me to put my darkest shades of lipstick on her. Sometimes I feel like Aunt Grace is still with us.

Grace uncommon, part 15

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We did everything that we could, but there came a time when we could no longer care for Aunt Grace.

For several months, we were able to provide around the clock care for Aunt Grace. Then one weekend we couldn’t find a caregiver. My dad and I weren’t able to take care of Grace that weekend. It might have been a wedding in the family, I don’t remember. It was another obligation that required a weekend away. The other two caregivers were not available either. My parents had no choice but to have Grace stay the weekend in a nursing home for respite care.

It was a Monday morning when my dad and I waited outside of her house for her return. The van driver got lost on Grace’s return ride home. He couldn’t find her home address on the map for anything. One of the difficulties of living in a very small town before good navigation.

We weren’t quite prepared for the condition that she was returning in. We almost told the driver to take her back when he left. They returned her in a wheelchair unable to walk. She could no longer hold her head up. Her head was tilted to one side. She could no longer speak right. Her words came out in a slurred moan. She couldn’t chew food. She choked on water. 

My parents took Grace back to the doctor. He said that she was starting to have small strokes. We could no longer provide the care that she needed at home. We did the best that we could.

 

Grace uncommon, part 14

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When I was a young girl, some of my best memories were of times spent with Aunt Grace. She would take me on bus trips to see musicals. Sometimes she would let me bring along a friend or my mom and grandma would go. I would stay overnight at Grace’s house the night before. I would always end the evening with a bubble bath. Then we were up before dawn to catch the bus.

One of the first shows that I remember seeing was Hello Dolly in Chicago. I don’t remember a lot about the show. Grace was excited that Mickey Rooney was in it. Plus the main female actress was rather old, maybe around 80. I don’t remember her age…I could be way off. What was old to me then is a lot different than what is old to me now. Heck, she could have been 40 but I don’t think so. Grace was excited that the female lead could do the splits and dance with the energy of a young adult. I remember being in awe of that too since I couldn’t dance, much less do the splits as a little girl.

Then Grace took me on a bus trip to see Oklahoma at the Fireside Theater in Fort Atkinson. I remember the meal before the show. Grace let me sit at the head of the table in a big theatrical wicker chair. They brought food out to the table that was on fire. I remember little of the show.

The next show that we were supposed to see, we didn’t end up going to. We were hit by a big snowstorm the night before and couldn’t go. I was so disappointed. Not long after that, Grace took me to see Annie at a local high school. Then she bought orange material and sewed me an Annie dress which unfortunately I did not wear that much.

When I was an adult, she still wanted to see shows. We watched Cats, The Phantom of the Opera, and Miss Saigon. I remember glancing over at Grace during the opening scene of Miss Saigon when the women came out on stage in thongs. I thought that she would be appalled, but she loved the show.

I think that all of those good memories prompted me to get on stage despite my shyness. When Grace found out that I could sing, she always asked me to sing songs in church. Then I started to audition for musicals at the local community theater. The first musical that I auditioned for, I took my daughter Angelique to audition as well when she was 8 years old. She has been singing and acting ever since.

The last couple of weekends, Angel has been auditioning for college and a summer performing job. She picked her college and auditioned for both the musical theater and vocal performance programs. The vocal performance program accepted her on the spot. We are still anxiously waiting to hear back from the musical theater program and the summer job which are much more competitive.

I feel that Aunt Grace was very instrumental in my love for the theater. This appreciation was passed down to Angel. I love the way that family blessings have a way of trickling down through the generations. Sometimes you never know the effect that you have on other people. Sometimes I wonder what my grandchildren will be like. Or I ponder over how different my life would be if I never had someone special like Aunt Grace in my life.

 

Whatever motivates you to run…lol

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Remember the mess that we returned to after our vacation in January? Maybe you need a refresher?? We sure would have liked things to be fresher! We came home after our vacation to a big mess. Our pet sitter gave her mom our garage door code so she could  feed our pets and let out our dog. Except that she decided to overfeed our dog and not let him out. So we came home that night to piles of puke, dog crap, and rings of pee. Not to mention that her mom went rummaging through all of our things. Yes, even my underwear drawer. Gross!

This week our old pet sitter turned 18 and moved out of the house. After all that happened, we have a new pet sitter now. Today while Paul was at the grocery store… What? Yes, my husband does the grocery shopping. Yes, he likes to cook. Oh yes, I know I am lucky! Yes, he probably is a better cook than I am. Okay, he is. Well, let’s just get back to the story..

While Paul was walking into the store, he saw the old pet sitter’s mom coming out of the store. She seemed shocked (embarrassed?? guilty?!??) to see him. She started running full force in the opposite direction with her cart full of food. All I could think was… my gosh, I hope she wasn’t wearing my underwear….

Whatever motivates you to run…lol.

Grace uncommon, part 13

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It was the scariest night I spent at Aunt Grace’s.

Aunt Grace lived in the same big farmhouse her whole life. However, the family business replaced the farm that should have been next door. My great-grandparents built the house in the early 1900’s. At one time, the unincorporated town that she lived in was bustling and alive with businesses, families, and even a train that ran through the town.

The town grew old right around the time Aunt Grace did. A lot of the major businesses pulled out of town leaving behind vacant buildings. Big old houses, the old grocery store, the dance hall in the bar, and even the old bank that Grace worked at were turned into cheap apartments. Weeds grew along the creek that trickled through town instead of flowers and freshly mowed grass like before. The family business shut down and the windows were boarded.

Aunt Grace’s house was always cold and drafty in the winter. Her house was even cool in the summer. She didn’t have A/C. She didn’t really need it. I remember it being a hot summer night that eventful evening. We slept with all the windows open. The kids and I stayed with Grace during the week without Paul because he had to work the next day. Even though my dad didn’t seem to mind staying up all night with Grace during the week, he sometimes needed a break.

That night after I put the kids and Grace to bed, I settled myself in on the couch outside of Grace’s bedroom. I awoke to shouting in the middle of the night. I looked out the window to see four men violently fighting outside under the street light. Punches were thrown. Men were dancing around in a bloody ballet. Does someone have a knife? What am I going to do? Will I witness a murder tonight? I have to call the police. But how am I going to dial Grace’s old rotary phone in the dark?

I am very afraid. If they hurt each other, what could they do to us? What if Grace wakes up screaming like she usually does? What if the children wake up crying? I feel vulnerable. I can’t protect anyone. I can’t get to the phone. I’m afraid to draw attention to the house. Don’t turn on the lights. All the windows are open with only a screen keeping them out. I am afraid they will see me watching in horror. I am afraid they will hear my ragged breaths.

I watched for those minutes that seemed like hours. The men stagger away into the darkness no longer under the street light. Do they linger in the backyard? Do they mean any harm? The adrenaline pumps through my veins preventing sleep. I can’t believe what I just saw.

Aunt Grace slept most of the night.

Grace uncommon, part 12

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I remember it being a very difficult weekend. It probably would have been in the top ten worst weekends of my adult life. But who wants to keep track of such things.

I don’t think that I could adequately describe how it feels to take care of a loved one that is suffering and dying from dementia. It was different from being a caregiver for my autistic brother, Matt. Sure, they both had good days and bad days. With Grace it was a gradual decline. Most days I didn’t recognize her anymore than she recognized me. I grieved for her while she will still living because she was already gone.

I was exhausted to the point of where I thought I could no longer hold on to the loose strings of my sanity. I hadn’t slept. Dealing with sleep deprivation was never a strong suit of mine. My patience was running thin. I was worn down.

It was one of those weekends that Aunt Grace was up every hour during the night. I “slept” on the couch right outside of her bedroom. Just when I was almost back to sleep, she would be up again. The kids would be up in a few hours and I hadn’t slept yet. I was having a hard time.

As I was walking with Grace to the bathroom, she looked right at me and asked me my name. I replied, “My name is Alissa.” Aunt Grace looked at me and responded, “I once knew a girl by the name of Alissa. She was a very kind and caring girl. I think that if you met her, you would really like her.” She was talking about me without knowing who I was.

I think at that very moment, God was looking down upon me with mercy. He gave me a glimmer of light to help guide me down a dark road. It was such a meaningful blessing to me that it motivated me to finish the race strong. It was exactly what I needed to get through.

I will never forget that moment.

Grace uncommon, part 11

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And then one day it happened. Grace did what she always told us not to do.

Aunt Grace told everyone not to get old.

My parents took Grace to the doctor for a check up. She failed the dementia test. Soon after that, she was no longer able to take care of herself. My dad, despite all of his shortcomings as a father, was great with his elders. He became Grace’s primary caregiver. He stayed with Grace every night, except on weekends. My autistic brother Matt still lived at home and my mom worked full-time. At the time, I was staying home with my three kids that were between the ages of 4 and 9. I became the day time and weekend caregiver. One other caregiver worked day time hours and another did weekends. 

Aunt Grace needed 24 hour care. The evenings were especially grueling since Grace would wake up at the minimum of three times a night to go to the bathroom. Some nights she was up every hour all night. She would scream until someone came and got her up. Over time, we tried sleeping pills at night. She would still wake up agitated and try to get up but be very uncoordinated. Sleeping pills were not a good option. 

So the weekends I spent there, I was up all night with Grace getting at best a few hours of uninterrupted sleep. Then my kids would wake up early. I was so exhausted. I had to be within two rooms away from Grace at all times because she would try to get up from her bed or rocking chair by herself and fall without assistance.

It was difficult to do with the kids because although Aunt Grace could not see well she had great hearing. If the kids made any noise at all, she would call them over so that she could flail her arms at them. She would yell at them and try to hit them. I often told the kids to leave her alone and set up a play room for them at the opposite end of the house. I find it sad that they remember her as a crabby old lady, not knowing the wonderful person she was before the dementia took over her person.

We spent a lot of time together. While we sat with Grace I helped my oldest daughter with her multiplication facts. Aunt Grace was a math wiz. She always jumped in with the answers before Angel could. But she didn’t remember our names. She didn’t know who we were. I spent a lot of time scrapbooking nearby. It was a time in my life where I was forced to sit in silence and reflect a lot.

By the time I became Aunt Grace’s caregiver, I had a lot of experience. Not only did I have 3 kids of my own, I  provided care for my autistic brother. I worked my way through college as a caregiver for an older gentleman with paranoid schizophrenia and an elderly woman with dementia. So it really didn’t bother me that I also had to bathe Aunt Grace. After awhile when she could no longer stand in the shower, I helped give her sponge baths. She was pretty angry with me for bathing her since she was always cold. Even on the warmest summer days, she needed her electric blanket turned on high. 

Our goal was to keep her at home as long as we could. It wasn’t easy because she was no longer the Grace that we remembered. In retrospect, even though it seemed like a long time while we were going through it, it really didn’t last that long. Plus it felt good to know that we did everything that we could to be there for her in her darkest hours even if she might not have realized it.