Autism’s sibling, journal 3 part 2

One time when mom’s old friend stopped by, Matt threw rocks at her car and she left..

What I don’t understand is why the nice friendly Christian ladies at church didn’t offer to give us an hour break from Matt. We never got a break. I only had two friends that lived with me, my two cats. But Matt was mean to them and they eventually ran away. Life with him has been hell. Even though Matt is small, he is very strong.

I also have a lot of nausea. Once my depression and nausea got so bad I couldn’t eat. Nobody cared about me. Nobody cared about Mark either. They cared about Luke because he was a troublemaker and got a lot of attention. Sometimes he would even be as bad as Matt.

What I hated most was talking to relatives. They always asked how Matt was. That really hurt because it is like I don’t exist. Usually people ask how you are. But imagine if they asked about your brother and not you. It hurts to know that people really don’t care if I’m alive.

I remember when the three boys were wild at the table. Mom had to feed them. Mom and dad would fight. Mom would get upset and go upstairs to cry. I was her best friend. I would talk to her and tell her that things would be better tomorrow, but it never did. There were always more problems or more doctor bills. Things are better now, but I still feel the pain and it’s holding me back from being happy.

I had a friend that stayed over once in awhile until Matt kicked her. She never wrote back to me after that.

Alissa, 1990

Isolation…being completely alone…emptiness…a cold barren winter devoid of color….loneliness…the crying of the wind…sadness…the darkest days of the year.

Isolation…for three years Matt had a school teacher come out to the house to educate him. He was deemed too violent to attend school. My mom took a leave of absence from work and pulled my younger brothers and I out of school as well. Sometimes we only left the house once a week to go to church. I spent a lot of time alone in my room writing in my journals.

Emptiness…Robbed of joy and childhood magic…My dad couldn’t handle the stress…he was there physically, but he was gone emotionally…I had to step up to the plate…the firstborn…the caregiver…the fixer…weighed down with adult worries…numb to pain, numb to joy…Pushing all feelings away…left empty inside…Not able to feel anything.

Loneliness…Friendships were severed. When friends came over, it was a disaster. We only had people over once or twice a year and it usually did not go well. My mom and my cats were my best friends. I had more pen pals than actual friends, it was safer…the friends we had went away and never came back…

Sadness…My mother, the kindest and most compassionate person that you would ever meet. I think that it truly hurt others when they had to kick us out of public places because of Matt’s violence…he hurt someone…I have to kick you out…you are welcome back again, but give it some time…Those were the years when I saw my mother’s tears more than I heard her laughter.

Isolation…being completely alone…emptiness…a cold barren winter devoid of color….loneliness…the crying of the wind…sadness…the darkest days of the year.

I spent three teenage years completely alone..Those were the darkest years of my life. Years that I don’t talk about.

 

Same road, different paths

A few days ago, my neighbor committed suicide.

This past week after my kids got home from school, Angel told me that she thought something was wrong. “Mom, there are a lot of cars in the neighbor’s driveway. There is also a police car in the driveway. He never had that many cars in his driveway, even for Christmas or Easter.” I looked over that way in curiosity, but dismissed any concerns because I saw the neighbor the day before and he was fine.

It all started a couple of houses down a couple of months before. Our neighbor had a rummage sale on a cool fall weekend. He told us that his wife of over 20 years left him for another man. They never had children, but were delighted to see ours when we stopped by year after year on Halloween. We looked through his rummage sale of broken dreams. He sold empty picture frames where wedding pictures, happy moments, and vacations used to be. He sold games, his and her costumes, wine glasses, and kitchen items. Then after that weekend, the driveway was empty up until a few days ago.

 I frequently saw our neighbor out on the road. When we first moved here, he walked his two dogs by our house. Then after awhile, he walked with one dog. That dog would walk slowly and the man would wait patiently. Then after awhile, the man walked by himself. He was a large man and every time he went by my dog would bark. He walked in all kinds of weather sometimes with weights. He wore a blaze orange hat. Every time he saw me he was friendly. He noticed when I ran longer runs and asked if was training for something special. I told him about the marathon. He wished me luck.

There are a couple of people that I see often while running and he was one of them. I spoke to him a few weeks back. I think it was about the weather. I told him that I couldn’t wait for warmer days as I ran by. Then I saw him the day before he died. We were going in separate directions on the same road. 

I feel sad that he was so lonely and unhappy that he took his life. I will miss seeing him on the road. 

A storm is brewing

I feel the edginess right before the storm hits. The peacefulness and calm from my vacation is leaving slowly like a summertime tan. I feel the wind surround the emptiness inside of me, trying to find a void to fill with cold icy snow. The warmth and sunshine are gone now. Sorrow, darkness, and anger encapsulates me. I cry out to God, but He doesn’t seem to hear my prayers. I feel the tug of emotions trying to drown me in a river of despair. I am alone. I want to be alone. I don’t want to talk. I really don’t want to do anything.

It has been a hard start of the year. I miss my neighbor and friend that passed away a couple of weeks ago. Every time I look at her house, I think that she is still there. She will pull her car out of the driveway and wave at me. We were supposed to do something together next week. But guess what? I can’t go. I looked over the old messages that she sent me. My heart tells me that she is still alive. She just can’t come outside. My brain tells me to stop being such a fool. Stop pretending that things are fine.

Last summer my best friend moved to Florida. I had the opportunity to spend time with her while we were there on vacation. I didn’t realize how much I missed talking to her and seeing her. I miss her. I don’t feel like talking to anyone else. In 4 months, my oldest daughter will be leaving the house. I am excited for her to start the adult chapter in her life, but I am at such a loss. I started crying while she performed her solo and ensemble song for me. It bothered me that she sold her junior prom dress. It just seems so final.

Then yesterday we found out that my mother-in-law has stage 4 terminal lung cancer. They are giving her around 15 months to live. Wait a minute, I am not ready to deal with the loss of our parents yet. I have been having a hard time with this since I saw her last week. I have been feeling sad and angry. With all of the people that were praying for her and my friend that passed away, why didn’t God heal them? I don’t have any control. Why should I expect miracles? I feel helpless. Who can avoid death? It has given Paul time to say goodbye to his only parent. That has been good for him to spend time with her.

This morning my son got suspended from school. He got in a fight with someone in the hallway. It has been no secret that my son has been struggling with school for the last couple of months. He has been begging us to switch schools for a couple months now. Apparently a boy called him a faggot on facebook back in December and has been bullying him with some other kids. My son got in his face today. I suppose that it shouldn’t surprise me that the day after my son finds out that his grandma is dying that he confronts this other boy. Words were exchanged between my son and this boy. They were pushing and shoving each other in the hallway. Then I received a call from the school that my son was suspended for 3 days. He was trying to provoke the other kid that was picking on him. Maybe this is a good thing. Maybe we can finally resolve this issue head on.

We are expecting a snow storm today. We should be getting somewhere around 8 inches of snow with blowing winds. It just started to snow.

The darkest days of the darkest years

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

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.

 

 

Hoarding, clutter, and cleaning freaks

I am knee deep in fall cleaning right now. I thoroughly clean my house twice a year, once for spring and once for fall. Spring cleaning is the big event of the year where I scrub the whole house with a toothbrush. Fall cleaning is more of a hairbrush clean. I used to thoroughly clean my house after every season, but I really hate dusting. Talk about a useless task! I dust everything and within a half an hour new dust takes over. Then I sneeze for 3 days.

I threw out and donated many items to the point of guilt. I come from a very long line of hoarders. When we sold Aunt Grace’s house, we moved everything into my grandma’s house. When we sold grandma’s house, we moved stuff into my parent’s shed. Now their very large shed is full. Time to build another shed! We did get a large dumpster for my grandma’s house which was emptied 3 times. We made multiple trips to Goodwill to the point where they didn’t want any of our crap anymore. Did you ever hear of anyone getting turned away from Goodwill for over donating? Yeah, me neither.

Yesterday I went to my parents house and watched them struggle to maintain their property. There was a pipe that was leaking into the basement. Mom took me downstairs to look at the damage. There was some water that pooled around food items that expired in the 1990’s. I feel overwhelmed at the thought of cleaning it all out someday. My mom has always been a food hoarder which she attributes to growing up poor.  She has 4 freezers and 2 refrigerators. The cupboards are full of mostly expired food. There are grocery bags sitting on the floor with new food. Downstairs the situation is worse. Multiple peanut butter containers that expired in the 90’s, homemade canned food items from the 80’s, glass containers full of stale grains, corroded cans, juice separating in bottles.

My parents also hoard other things like cars, magazines, paper, newspapers, clothing, blankets, wood, books, movies, old toys, candles, soap, empty jars, tools, and parts. My dad collects electronics, broken parts to fix other broken parts. The floor and chairs are stacked with papers. The dining room table is never clutter free and neither is the kitchen counter. Nothing is thrown out even if it is expired, broken, or useless. Paul’s mom and step-dad are hoarders too. They have 2 refrigerators in their small kitchen. One doesn’t work and is used for storage. Both of our parents have given us some of their junk which we throw out for them. Thankfully Paul and I share the same motto of when in doubt throw it out. Looking at my kids rooms, I think we may have a few future hoarders on our hands. 

As a clean freak, the clutter overwhelms me. I can’t breathe. I feel a lonely emptiness in a room stacked full of clutter. It rises within me a feeling of absolute despair which I cannot explain. It feels hopeless. I want to throw everything away. I want my house to be clean, but no matter what I do it still feels dirty and messy.

A few years back, my brother Luke and his wife brought her sister to my parents house with them for the weekend. Luke’s sister-in-law told my brother that my parents house was so messy that she would never stay there again. Luke told my mom. This started a big fight with a lot of tears and stress from my mom. Luke was hoping that my mom would throw things out like he does, but instead they built another shed. My mom gets very attached to items and needed a lot of moral support to throw out my brother’s baby blanket a few years ago when he was well into his 30’s. We also did not want our old baby clothes for our children. Why do items attach so much hurt for the people who don’t want to part with them and the people that don’t want to keep them?

I have helped my parents countless times in the past. It is so overwhelming to me. It is like emptying a lake with a cup. I feel guilty for not helping them more. I’ll be totally honest, I can’t handle it. It elicits such a strong negative response within me that is unbearable. So I scour every corner of my house. After cleaning I still see all of the streaks in the windows, all the stains on the carpeting, the little yellow rings that don’t come out of my sink and bath tubs, the grease that lingers around the oven, the little spots on the walls, and the cracks in the linoleum. Will we ever be free from cleaning or hoarding? Will we be forever haunted by earthly treasure or trash?

Judged

I always thought that I was a really good judge of character. Don’t we all? I have heard people admit that they are selfish, lazy, unorganized, vain, but I don’t recall anyone ever saying to me that they are a bad judge of character. Why is that?  Do we want to see the best (or worst) in people despite contrary evidence? I have been struggling with this concept lately. I think most people are embarrassed to admit that they were wrong about someone’s character when their hearts were broken or money was stolen.

I met Jake a couple of years back when he still was a boy. The first time I saw him, he was walking his dog by our house. At the time, I thought maybe he would be a good friend for my son. One day I just happened to be looking out the window when Jake walked by. I just let my dog out and was looking towards the road when I saw Jake’s dog drag him over the meet my dog. In the process, Jake got clotheslined on our mailbox. The dog further dragged him into the ditch. Jake laid wounded on the grass with blood coming out of his neck. I freaked out. I sent my oldest daughter out to get him while I panicked. Eventually I bandaged up some of his wounds and gave him a warm washcloth to put on his scraped and bloody neck. I tracked down his muddy mutt and loaded them into my car to give them a ride home. Welcome to the neighborhood!

A few days later, Jake’s mom sent me a note thanking me for taking care of her son. I still have it which is remarkable because I throw everything out. Over the years, Jake and my son became very good friends. I always liked Jake. He was courteous, quiet, happy, friendly, and kind. He always thanked me when I gave him a ride to school. He was the kind of kid that I wanted my son to hang out with.

Then this summer, things changed. Jake grew into a troubled teen. He was no longer happy. He stopped thanking me for rides. He went to the gas station and stole a pack of cigarettes. His parents made him return them and apologize to the owners. He was grounded for over a month from everything. Then one cool rainy night, he ran away which I blogged about previously. He vanished for almost 48 hours, then went back to school like none of it ever happened. He was present, but not quite there.

A few days after Jake went back to school, his mom texted me with concern. She said that a teacher asked the students to draw a picture of what they were doing for the weekend. Jake drew a picture of himself alone in the corner of his room with his knees folded and his head down in despair.

Then a few weeks later, a note came home from school stating that a student talked about bringing a gun to school. Apparently, a boy had created a hit list with 6 names on it and stated that he was going to bring 7 bullets to school. It was Jake. Jake said that he didn’t mean it, but he was sent away for a couple of weeks for treatment.

Last week I saw Jake walking his dog when I went on a long run. I asked him how he was doing. He smiled and replied that he was doing good. I just have to wonder if his smile was sinister or sincere. I always liked Jake and thought he was a good person. I still want to believe that despite all of the contrary evidence. How could I be so wrong?? In my mind, he is still the sweet and caring boy that I first met years ago. Not the troubled teen that he has become. I have been having a really hard time with this. I feel unsettled, I want to trust him again but can’t. I feel thankful that the troubles with my teens are trivial in comparison. I worry about his family. I pray that Jake can find the friendly and happy boy he once was.

A game of cat and bird

image

I admit, this picture is not award winning. But it is one in a million. How often are you in the kitchen with your cat when a bird decides to peek in? Plus have the opportunity to take a picture before the moment passes. I have always been a bird magnet which causes conflicting polarity since cats have always been drawn to me as well. Or perhaps the bird was looking in hopes to find our neighbor that moved away. His massive gardens and bird feeders long gone.

A few days later, I was sitting on my deck listening to the old Pink Floyd song Cirrus Minor. The song begins with the melodic singing of birds. My new friend came over by me again. I think he must be lonely. I would recommend other Pink Floyd songs to him if he could get past The Wall, that is. He may relate to the raw feelings of loneliness in The Final Cut. Or like the sounds of clocks and bells, even the little sounds of bicycle bells that may honk at him. He may also like the sounds of other animals such as pigs, sheep, dogs, insects, or cows in other songs. Or the lonely seagulls cry in Set Controls for the Heart of the Sun. He may think some of the old songs are just too creepy. Some are, but if you dig far enough into the “Relics” there are a few hidden gems like Cymbaline, Julia Dream, and See Saw. Or “our song” which has always been Fat Old Sun, not Fat Old Son as my husband jokes. 

I have seen evidence of you, little bird, when I was gone. Little streaks of bird poop on my clothes drying on the line. I didn’t appreciate this, but I know I have to take the good with the bad. You do tolerate my cat. I might miss you when you decide to fly away. Some day I too will be alone when my little birds decide to leave the nest. 

What happened after….

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 

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?