Autism

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.

Autism’s sibling, journal 1

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I love you Alissa. I am thankful the Lord has given you to me. You are a beautiful child. 

With Love, Your Mom XO

1/1/85

Had to clean my room before I ate. I ate at 8:07 PM.

6/19

I hate everything and everybody. Matt takes a knife and tries to poke mom’s eyes out. Mom blames me.

7/15/86

I hate mom. She only cares about the stupid Matt.

8/4

Matt tries to hurt our aunt. He is reacting to something he is allergic to. Luke pushed me into my aunt and uncle’s swimming pool with my clothes on. I had to ride home wrapped in a blanket.

8/19

Today Matt bit me. My arm will turn black and blue tomorrow. Mark stuffed a pepper up his nose. He cried and cried.

9/12

Mark got beat up by someone the day of his birthday party.

The travel diaries

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One of the big items on my bucket list is to visit all of the continents in this world with the exception of Antarctica.  I can see myself taking the road less traveled. I have already started treading off the beaten path armed with nothing more than a camera and a story to tell. I decided to start a travel series this month. Who knows, maybe I will talk about your town as an outsider looking in to your world for a brief moment in time.

I always wanted to travel. Growing up the only “vacations” that we ever took with our whole family was going up north to the cabin. There were 3 trips that we took with the partial family. The first trip we drove down to Texas to take my autistic brother to the hospital. We didn’t stop anywhere along the way (except a hotel) or do anything fun so I am not sure that this counts as a “vacation”. The second trip we went to South Dakota to a conference with Aunt Grace. On our way back to WI, we drove 10 hours out of our way to stop in Canada for 20 minutes to get my aunt some tea. I wrote about this trip in one of my first posts. The third was a bus trip to South Dakota with my aunt and uncle’s church when I was in grade schoool. It was hot and stormy, a severe thunderstorm came up while touring the Badlands which was really awesome if you weren’t afraid of storms. The AC ended up going out on the bus and a lot of people felt sick. A teenage boy got upset and ran away. We saw the outdoor passion play. Just before the crucifixion scene another freak storm came up. Everyone went running as the thunder crashed and I got lost. That is my childhood travel experience in one paragraph.

Paul also wanted to travel. You can imagine how much traveling he did growing up with a poor single teen mom. He was 40 the first time he was on an airplane. Last week he asked me if I would be open to sailing around the world. I said that I wouldn’t be opposed to the idea at this time, but lets do the Great Lakes loop first. We both desire to live a life of adventure.

But how are we going to have this lifestyle living on a variable income? The first thing that we did was buy a modest house. The last thing that we wanted was a high mortgage payment that would trap us. We live cheap. Up until last year, both of our vehicles were over 10 years old. We bought our kitchen table at a rummage sale. Our bedroom set is the same one that I had as a kid complete with broken drawers. A majority of our furniture including a TV, couch, love seat, recliners, deck furniture, end tables, and lamps were inherited from deceased relatives. We bought our hutch at a good price when my aunt got a divorce. We bought our entertainment center used from another relative. Oh my gosh, I didn’t even realize what a bunch of cheapskates we really are. Not that I have to justify spending money on a vacation once in awhile to any of you anyway. Geez.

I will be going through one autism diary a month as well. Until then I promise to entertain you with travel stories off the beaten path… 

Encouraging “notes”

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Yesterday my daughter and I received a hand written thank you note in the mail from someone that we know, however not someone that we know well.

I wanted to let you know how much we enjoyed hearing you sing on Christmas Eve. You have such beautiful voices, and we are so blessed that you are willing to share them with our congregation. God has truly blessed you both with an amazing gift. We hope you continue to bless us by sharing it with us-OFTEN!

Where were you 25 years ago??? I really could have used your words of encouragement then. For some reason my choir teacher hated me. I am not even sure why. My opinion was that once again it had everything to do with having an autistic brother. There were some teachers that looked down upon my family as if my brother’s autism was caused by poor parenting. This teacher always had a smile on her face. Maybe she hated me because I was always down. Maybe it was because I had a hard time smiling back because my home life turned my smile into a frown.

There was that time that I tried out for cheerleading when this choir teacher was the judge of who made the team and who didn’t. On the day of tryouts, I was at home sick with the flu. The teacher said that being sick was no exception. So my mom took me to school with a fever so I could try out. I was the only one that didn’t make the team. Then I lost some friends because the cheerleaders became the popular girls. I was so sad when I saw everyone’s name posted on the wall except for mine.

Then I was homeschooled between 8th and 10th grade. It was during that time that I sang a song for my mom and convinced her to sign me up for singing lessons. I had singing lessons for a couple of months. I didn’t really like the songs that I sang because I thought that they were babyish. After a couple of months of practice, we had a recital. I got up on the stage by myself in front of a lot of people and froze. Barely a whisper came out. My mom didn’t sign me up for singing lessons after that. I thought to myself that I was a failure.

When I went back to school as a junior, I was behind in so many things. I was far behind in sports. I didn’t join band because taking three years off from playing the flute put me way behind the other kids. I did join the choir. I tried to perform a solo and ensemble piece, however after singing through it twice the choir teacher said that it wasn’t good enough. I wasn’t good enough. What I really wanted more than anything was to join jazz choir but I didn’t even bother trying out because I knew from experience that I wouldn’t make it if that teacher was the deciding factor. Once I got to college I wanted to join the choir but didn’t because I thought that I wasn’t good enough despite being able to sight read music and having a 3 octave range.

A few years back at my high school class reunion, we had karaoke. After I sang several songs, I was approached by the spouse of a classmate who said, “I bet that you were the star choir student in high school.” I hated my choir teacher at that very moment. I allowed her to steal my gift.

Even though I felt hatred for that teacher, I have to look at myself. Am I any different?? Do I give words of praise and encouragement? Or do I condemn and criticize? I can tell you that I am not where I need to be either.

This year I want to be more encouraging. I am going to look for someone to thank with a hand written note for doing something that everyone else overlooks.

The darkest days of the darkest years

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Isn’t it funny that Christmas comes during the darkest days of the year, the time of the year that we so desperately seek out light. That was all that I wanted those darkest years, to be able to see a ray of light, a glimmer of hope. But all glimmer of light was gone. I had lost my hope. I fell into a time of deep despair. I was angry with God.

Those are the years that I don’t talk about to even the closest of new friends. Nothing. Nada. Zip. Zero. The darkest years happened when I was in middle school. My autistic brother Matt became increasingly violent. So much so that he was not allowed to go to school with other kids. He had to have a teacher come out to our house. When Matt got “kicked out” of school, my mom took my brothers and I out of school too. My parents had us 4 children in less than 5 years, with me being the oldest. I was homeschooled between 8th and 10th grade. While my classmates attended prom and homecoming, I was at home in isolation.

Through the darkest years, my dad totally checked out emotionally and became very depressed. My mom became desperate to find a cure for autism, taking Matt out of state to a hospital that did extreme allergy testing. She thought that if he avoided certain foods and allergens, it would curb some of his violent outbursts. When they came back everything changed for us.

Matt was allergic to everything. My parents got rid of their wood furnace and put purifiers throughout the house. My mom took down her bedroom curtains because they had formaldehyde in them. She used old sheets and blankets as curtains. If the local farmers were spraying their fields with pesticides, she would call them screaming if she didn’t get notified first and Matt would have to wear his charcoal mask. If they did call her to notify us, we had to pack up our car within a half an hour and head up north for a couple of days until things gassed out or it rained. My parents had to park their cars at the bottom of the driveway so exhaust fumes would not come in the house. If my dad snow blowed the driveway, he was not allowed into the house with his snow gear on and had to shower immediately. I wasn’t allowed to wear perfume, hairspray, or nail polish. Those were just a few of the changes that were made in attempts to control Matt’s violent behavior.

It was very hard that year at Christmas. My mom said that Matt was allergic to Christmas trees, even the fake ones. It was at that time that we no longer had a Christmas tree in the house. No decorations. No lights. Nothing. Even my grandma was instructed not to put up a Christmas tree. Instead she put little bows on the wall in the shape of a Christmas tree. It was horrible. Matt had meltdown, after meltdown, after meltdown. Day after day he attacked me. He kicked me, punched me, scratched me, hit me. Ironically, taking away all of the things away from Matt (and the rest of us) did nothing to tame his aggression. It seemed to hurt us more than it helped us.

But how could I be angry at my mom for trying everything she could think of trying? How could I be mad at my brother who wasn’t bright enough to read or write? I fell deeper and deeper into despair like a small flower buried under the cold deep snow.

Still the classical music plays

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My mom called me in the say that Mr. Smith died today. Tears fall from her eyes but all I want to do is go back outside to play. The snow is over my head and I want to go back to my little hill to sled. My little brothers are busy ants digging underground tunnels in the snow. It is cold and quiet outside. Sometimes I sing a song to hear my voice echo back to me. Then I don’t feel so alone. I am always alone. None of my friends are allowed to come over and play. Matt scares them away.

My mom takes me over to see the really old people in town. She said they like it when little girls come over to play. They don’t have any family and are all alone. I like Mr. and Mrs. Smith. Sometimes Mrs. Smith gives me cookies and one time she took me upstairs to see the dolls she used to play with. The dolls are really old and I can’t play with them. Mr. Smith showed me his card shuffling machine. I really liked it. Mr. Smith is sick. He coughs a lot. Sometimes he doesn’t get out of bed when we visit. Mom said Mr. Smith died today. Maybe I’ll see him tomorrow but right now I really want to play.

Mom keeps crying. It is making Matt upset. We can’t sleep. Matt rocks back and forth in his bed. He rocks until his face bleeds and blood is on his sheets. My little brothers can’t sleep because Matt is making too much noise. My three brothers share the room next to me. Mom cries. The day Mr. Smith died, mom put a record player in the hall at night. She thought that the classical music would soothe us to sleep.

Night after night, the classical music plays. But it doesn’t relax me. Instead I feel afraid.

 

 

Demons past, present, and future

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Every couple of months my mom and I take the day off of work to spend the day together. This usually involves going out to eat for lunch and getting a massage. Last week we had our mother-daughter day. This time it included a back burner task. I decided that we needed to take in all of our old family videos to be saved onto a hard drive. Silly me, I thought that we could drop off the old VHS tapes and be out of there in a half an hour. We ended up being in the store over an hour talking about not only converting our old family videos but also eventually taking the old family photos in to preserve them.  I know that I have at least 3 large bins full of pictures to scan. This is going to be a big project.

It was at that point when it really hit me that my parents are getting old. It seems like yesterday that I was going through all of the old pictures with my grandma and great aunt Grace trying to put names to faces. All of my grandparents are gone now. I have only one great aunt left. My mom is the oldest living sibling. My parents are close to 70. Now is the time to work on this huge project with my mom.

It is also the reason that I don’t want my mom reading my blog. She is getting old. I don’t want this to be a reminder of the most difficult times in her life. She finally has a sense of freedom that she never had before. She doesn’t need to be reminded of the hard times. I don’t need to remind her of the day that she was trying to stop Matt from hurting himself during a meltdown. That was the day that she ended up with a black eye and bloody lip. It would be very painful for her to have to remember those days. It is very painful for me. Her life has been very difficult, I want her last years to be happy.

Matt also went to my daughter’s choir concert this past weekend. At one point he became separated from our mother. He became very anxious and agitated pushing through the crowd to find her. I calmly reassured him that he was alright, that mom was close by. But what happens when she is no longer with us? How will I not only get myself through it but help my brother through when he cannot process change? Every time I spend time with my mom I reassure her that I will help take care of Matt when she is gone. It will be alright, I can do this.

I decided that I will write a book about the journey of life with an autistic sibling. It will be hard. It will be painful. Next year I will dig out the old box of journals written during the darkest years. I will share it with you. I will start the process. Maybe I will even find out why I can’t relax. Why I always have to stay busy. Relaxing makes me nervous. Why does my skin crawl listening to relaxing piano music? Why does quiet meditation fill my soul with terror? Time to face my demons. I can do this.

Why do I torment myself with this? Do you know how easy it would be to delete this blog and walk away like none of this ever happened? But I can’t seem to let it go.

Disabled family cohesion

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Yesterday was my daughter’s last high school holiday choir concert. My mom went and some close friends. You can really tell how close your friends are if they offer to go to see your child perform. I really appreciate that. Our family is a little more sketchy. My mom makes it out to 99.9% of my kids events. My mother-in-law says she is going to 50% of things and usually would cancel out last minute and make it to 20% of things. I think that not showing up at all is better than saying you are going and not showing up or giving a lame excuse not to go. My dad and brothers are very sporadic about showing up to events.

My kids all have late spring/summer birthdays, so year after year I would throw a family party for them all at one time. A couple of years back I decided to cancel the family birthday party due to lack of interest. I felt very frustrated and angry about the whole thing.

Then a couple of days ago I really started to examine the reason why there is this lack of cohesion within my family. Then I remembered every time that we went on family vacations together, all of the times that we went out to eat as a family, the hugs, the laughter, the times that my whole family came out to see my concerts, my graduation. Then I realized that none of that happened. No family vacations, I can’t remember ever going out to eat as a family when I was young. Those things didn’t happen.

This is what REALLY happened. My mom had to find someone to take care of my brother Matt to come to my events. Lots of times my dad would stay home with him. Matt has autism and Tourettes. Taking him out in public to an event such as a concert or graduation was nearly impossible when he was younger. He would often have a melt down in public. He was hyper with a lot of anxiety that he would have a melt down. His anxiety caused his tics to be worse. Tics included hand flapping, eye twitching, and throat clearing. At the very worst, he would injure himself or others and had so much anxiety that after going to an event he would be nervous and throw up for two days afterwards. People were a lot less sympathetic towards those behaviors back when I was young.

So my brothers and I grew up living separate lives. We went to separate schools. We did not support each other. We never learned how. Luke didn’t go to my college graduation or party that followed it because he chose to be with his friends instead. When Luke graduated from college, I went but had my husband stay home to help take care of Matt. When Mark graduated from high school, I didn’t go and went to work that evening instead. Mark never went on to school and I missed his only graduation. It was only later that I learned that family events are important but I can’t go back.

But I can move forward. I can show my children how important it is to support their siblings. I can encourage them to attend their events. I tolerate them saying that they are bored. When is it going to be over? Is it almost done? I am trying to teach them this lesson now so they won’t have to learn it the hard way like I did.

It took me a long time to get over the hurt, depression, and worry involved in extended family events. I can finally say that I get along with my parent and brothers the best that I have ever gotten along with them. I do see my brothers, especially Luke, making more effort to have a relationship. Matt has an easier time going out to events. Things are finally coming together in my story.

 

 

Life, goals, and dead plants

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I woke up this morning in a strange place, a different bed. I killed another house plant this week, my last living one. I justify that by saying that I spent one third of the month in hotel rooms like the one I am in now. Five different hotels, two states. Some for business, some for pleasure. My mind searches for the perfect excuse. I couldn’t provide proper care for the plant. Hey, at least I managed to feed my kids and pets. 

When my daughter gave me the plant for Mother’s Day, I inwardly cringed. I have to manage to keep this alive!  Once I got a chia pet for Christmas, I felt it was way too much pressure. So I took the plant to my office. I developed a watering routine. I watered it every Monday morning and every Friday afternoon. I put it in the sun like it said on the little tag it came with. It did thrive until the sunny days were gone. I didn’t achieve my seemingly easy goal. 

It made me think of other goals I have had. It seems like finishing a marathon is an easier goal than keeping plants alive for me. Crazy!?!  A few days ago, my husband asked me what my goal is for writing. That had me stumped. A goal? Was I supposed to have one? I started this blog right after I got my house plant. I am still going. It is still active and alive. But where is it going? 

I like to write for fun, to share unexpressed emotions, to help others. I want others to know what it was like growing up with an autistic brother back when no one had autism. I want to share my own struggles and joys of parenting teens. I want to share goals and experiences as a runner. I want to make people laugh. I want to share life and all of its woven intricacies. But where am I going?? As a goal oriented person, do I need goals to write?

My husband said that I am a gifted writer, but he is very biased. He said that maybe I should consider chasing my own dreams. He started his own successful business. We work together. He said that I was riding his dream. He said he would support me if I decided to start a career in writing. He suggested that since I have a love for photography and writing that I should think about writing marina reviews or write a book. His words overwhelmed me. What are my goals? I have no structure, I just write about what I want to write about. Where do I go from here? Is this just another time consuming hobby? All I can tell you for sure right now is that my future does not involve gardening or house plants. 

Modern parenting

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I remember growing up in the 1980’s. As teenagers, our parents thought we were the worst of all generations before us. They did not understand our music, rock ‘n roll and hair bands. Talking about hair, they did not like the way we dressed. Our hair was too poofy our makeup too wild. We spent countless hours at the mall trying to be material girls. We wasted gobs of time trying to get to the next level in Pong, Space Invaders, and Frogger on our Atari’s. We traded in our records for a large boom box with a tape deck. We dubbed tapes off of other friends tapes off of other friends tapes instead of listening to what our parents listened to on the record player or radio in the living room. Kids were rebellious, times were changing, and parenthood was hard.

As a parent of teenagers, I look back and wish times were a little simpler. We have less control and no guidelines. How much computer time should we allow our teens to have? How do we enforce that? How do we implement parental controls when we need our teens to help set them up? How do we monitor what they are doing when they know more about computers than us? I think that this is probably one of the biggest generation technology parenting gaps that has ever been and probably will ever be. At least our children will know what to do with their children because they grew up with the internet. From experience they will know from their childhood all the things that we don’t know now.

How do we know what to do? How much computer time is too much? My teens now do their homework on their computers. Taking away their computers is like taking away their pencils and paper. Is it good for them to spend all the time that they can on computers so they are prepared to use them in future careers? It is extremely hard to be hypervigelent with our teens use of the Internet without sitting next to them the whole time they are on it. This also is hard when they are at the stage in life where they want to be independent more than anything. If we have no reason not to trust them should we treat them like they are untrustworthy??

I remember as a young child finding my dad’s girlie magazines and showing them to my friends. They were in our house. We don’t have that option of keeping it out of our house if we don’t want it there anymore. My oldest daughter was exposed to porn in middle school when our previous pastor’s daughter showed it to her on a computer in our own house. Who would have thought?

What about cell phones? Back in my day, we had to talk on a phone tethered by a cord on the wall. There was no privacy. Now teens can talk anywhere with complete privacy about anything they want. If they wanted to send or receive naked pictures of someone, it is a click away. Who would ever know?

Now as far as music goes, the options are limitless there as well. If I wanted to buy a parental advisory CD as a teen I would have to go to the music store and show them my id. Once again, anything can be downloaded or listened to and I wouldn’t even know. How do you become proactive in monitoring that?

What about school shootings and violence? Back in my time there were a few kids that would call in bomb threats when they wanted the day off. I assume that doesn’t happen all that much anymore with caller id. Instead there are school shootings. Do you know how scary it is to send your child off to school after something like that happens?? Yesterday I received a letter from the principal of my children’s high school stating that there was an incident where a student was talking about bringing a gun to school. The authorities were called into the school to investigate. So, I sit here and worry. Worry about the things I can’t control. I wonder if I am doing a good job as a parent. Is anyone really? I don’t know what the hell I am doing parenting the modern teen. Does anyone? We are dealing with issues that our experienced parents wouldn’t even be able to give us advice about. 

On the flip side, it is a great time to be a parent. We have webmd for every bump, scratch, and sniffle. There are online support groups for any parenting issue. There is countless free advice for practically any parenting problem from getting stains out of clothes, potty training, to extra math tutorials at the tips of our fingers. Maybe it would have helped my parents raise us when they had 4 teens in the house at the same time. My brother could’ve gotten diagnosed with autism earlier, maybe would have had early intervention therapy. My mom could’ve joined online support groups and wouldn’t have had to parent an autistic child totally alone finding out what worked through trial and error.  

Ah, these are the best of times and worst of times for parenting. I am doing the best I can.