Switching gears

As we speak, my daughter is on her way back to college. This is the first time that she doesn’t want to go back. It is because we are cool and all that. Seriously though, it is amazing having a child that wants to hang out with you versus having one that finds you annoying. She is finally able to see us as we really are.

To tell you the truth, I think parenting is a sham. We try to act like someone else around our children. We want them to be better than us. Part of the way we do that is try to hide our weaknesses and mistakes from our children. We nag our teens about being responsible and cleaning their rooms when we were back talking brats that lived in a pig sty like they do. Then suddenly they become adults. For better or worse, the blinders come off. We realize that our child has become a friend because she is really just like us.

We don’t have to lie to her anymore. We don’t have to tell elaborate stories about the tooth fairy, Easter bunny, or Santa. We don’t have to show fake excitement for stupid children’s songs or TV shows. When Angel was little, she was really into Barney. I sure am glad that is over now. If I had to listen to another song about cooperation and sharing from a purple dinosaur while my kids sat in front of the TV and fought, I would probably lose it.

Now we can have fun together and have serious conversations.

There were a lot of last minute dinner dates and shopping to send Angel back off to college.

On Friday, Angel and I went out to eat with my mom for lunch. We went to a local restaurant that wasn’t too busy and what did they do?? They set us up at a table next to and facing a couple with their adult disabled son. The couple was trying hard to get their son to act appropriately. He got up several times and burped loudly. Can I never escape reminders of my own brother??

My mom said that she really wants me to write a book with her. I also feel the mission that I have a story to tell.

I actually have two stories to tell…

The first story is about my brother Matt…growing up with a violent autistic/schizophrenic sibling. I have just touched the tip of the iceberg. There is so much hidden underneath the surface that I haven’t even begun to delve into yet.

But I can only tell the story in small pieces. There is a sadness, melancholy, depression that is hard to explain after diving into the depths. If I spend too much time there, I will surely drown.

I am a broken person, despite my tough exterior. Only a few people truly realize that. You are one of the few people I let inside. Paul notices so many things that others overlook. He understands. We are both high functioning broken people. Silently we weep together. Together we succeed at fighting our demons.

It is hard to find someone on the same level who has survived difficult circumstances. I’m thankful that we found each other.

The second story I was meant to tell is about Paul. So I am going to switch gears a little bit here…but trust me if you can…it will be well worth the ride.

Emerging from the ashes

I am angry.

I am angry with my mother.

I am angry with Matt.

I am angry about my childhood.

I am angry.

There I said it.

It was difficult to admit and hard to post yesterday about feelings of anger. I must have edited the post a million times as the minutes slipped away. I cut and hacked the angry words away. I almost scrapped the post altogether. I thought about deleting it after I posted it.

Anger…I was taught that it was wrong to feel that way.

You shouldn’t feel angry, it agitates Matt.

You shouldn’t feel angry, he can’t help it.

You shouldn’t feel angry, you are normal.

You shouldn’t feel ANGRY!

You shouldn’t feel angry…

You shouldn’t feel…

I didn’t feel…I stopped feeling. I was numb inside. I could no longer feel pain, but could no longer feel joy. I was empty inside. I became devoid of color. I lived in a cold, barren desert. No more tears, no more laughter. I could stare at the same spot on the wall for hours. I was sinking inside of myself.

My mom sent me to a therapist.

How do you feel, Alissa? I don’t feel.

Yes, you do. Take a look at the feelings chart. I don’t know.

Over time I started to feel again. But the feelings right away weren’t good. I felt everything that I wasn’t trying to feel before. It was a dark place. I was afraid that I wouldn’t make it through to the faint light in the distance. Sometimes the empty void called me back. You don’t want to feel if you have to feel like that.

It was a long journey to get to the place I am now.

I had to lock away the demons that tore at my soul. But I still kept the key.

Sometimes, in the dark of night, the flame from the fire that burns through the keyhole draws me in. I’m curious if I can stoke the fire without getting burned. I keep looking in. I pick at old wounds to see if they still hurt. The scars are starting to fade.

I’m holding the key. I feel strong enough now to slowly unlock the door…

I think the person that emerges from the ashes will make walking through the fire worthwhile.

 

 

On ffffffeeling angry

My mom called me first thing Monday morning. She told me that she wanted to work on her feelings of anger. She thought it would be a good idea if I did too. Maybe, she said, I should think about seeing a therapist.

She point blank asked me if I was angry with her. No, mom. She asked me if I would tell her if I was angry with her. Sure, mom.

My mom asked if I was angry that my autistic brother Matt hurt my daughter Angel. Mom, that happened over 15 years ago.

My mom asked if I was angry that she spent/spends more time with Matt than she did with me. Mom, Matt needs you more than I do.

Right now I spend my time angry about other things. Arabella is starting to get late assignments. Her straight A’s are starting to slip…Not to mention that she rolls out of bed 10 minutes before the bus comes and expects to have enough time to take a shower and get ready. And somehow that ends up being my fault.

I am angry that I got a letter from the police department regarding a fine my son received over break for doing donuts in a parking lot…a minor incident nonetheless, but we didn’t find out until we got a letter in the mail. We told him that he had to pay his own fine to find out later in the week that he pissed away most of his hard earned money from his summer job on fast food.

This is what boils my blood now.

But I don’t tell my mother that. I barely talk to her at all about anything personal anymore. I don’t tell her about the things that make me angry. I want to protect her from that. She has had a hard life. She shouldn’t have to deal with any more problems during her last years.

To tell you the truth, sometimes I am angry with my mom. I am angry that I gave up my childhood to take care of my brother. Then when I needed her the most, I felt like she wasn’t there.

My mom did the best that she could. So why should I feel angry?

So what if she babies and spends more time with my disabled brother?? He needs her more.

Why do I feel anger towards my mother sometimes for something she had little control over??

The more important question is why don’t I feel anger towards my dad?? He had an ideal childhood, but wasn’t a good parent. He was lazy. My mom worked long hours to be the main breadwinner. She supported the family. My dad worked part-time jobs here and there.

My dad stuck around but wasn’t there. He was more interested in TV than being an active father or supportive husband. When he was involved, he was reactive and abusive.

My mom did everything and needed help. So I stepped up to the plate to help my mom raise my 3 younger brothers.

That being said, why should I feel angry towards my mom?? Why not my dad? She did the best she could. He could’ve done so much better.

How come feelings don’t make any sense?? There really is no logic behind them. They are so complex that I barely understand my own feelings much less the feelings of others.

No, mother, I am not angry…says my mind…but on some days my heart tells me differently. Why??

Past presents

I think it was my aunt’s mission to get me drunk at the family Christmas party.

Alcohol…it has a way of bringing me to life. It makes me feel emotions that are otherwise stuffed away. I answer questions less guarded. Sometimes not only do I then like people, but I become the life of the party.

I was cornered. Have a glass of wine. Once it is emptied, it was refilled by another. Normally I might have told her to piss off (but probably in kinder words)…I am in control of my body and how much I choose to drink. But for some reason, I didn’t care. My aunt through marriage is a very eccentric person and I am drawn to her because she is exciting.

After a few drinks, my aunt started talking about her college days. Apparently she was in a sorority and could drink most people under the table. She started asking questions about my college days as she refilled my glass yet again.

What I told her was that I spent a majority of my college years taking care of my special needs brother. I told her that my mother needed my help so I stepped up to the plate.

What I didn’t tell her was that I only applied to one college, the one closest to home. I didn’t tell her that I never went to one party when I was in college. I didn’t tell her that my mom had a hard time keeping minimum wage caregivers for Matt because he was violent towards them. I didn’t tell her that Saturday night was shower night for Matt, not party night for me. This was the night I bathed him like a small child, not like a slightly younger brother.

My aunt told me I was gypped. Why didn’t my mother put Matt in a group home sooner so I could have a somewhat normal life?? She told me that she saw all these things happening to me but there was nothing that she could do about it.

Her words brought tears to my eyes that threatened to drop. I didn’t want her pity. I told her it made me a better person. That is just the type of bull I say to make people stop seeing me as a victim. I view myself as a strong person, not in any way am I weak or to be ever portrayed as such even though I once was. This is the protective shell I cover my hidden vulnerability with.

Has it made me a better person?? In all honesty, probably not. I don’t believe that I would’ve been a ‘bad’ person if I went to a keg party instead of staying home on a Saturday might to bathe my brother.

Usually I just keep my mouth shut about topics that could lead to conversations about my childhood. I don’t like people picking at my scabs. I feel very hurt that I was robbed of a childhood. It has been a great weakness for me as a parent. I’ve spoiled my children by giving them the childhood I never had. Deep down inside I feel hurt, anger, and resentment towards my mother for taking that away from me. I feel guilty because I know that my mother did not want it to be that way.

I am living the best years of my life right now, but I can’t seem to escape the constant reminders of a painful past.

Grandma’s rocking chair

My eye hurts really bad. It feels like it is on fire as the tears roll down my face.

Matt is screaming again. He poked me in the eye on purpose. We are both screaming now.

I told Grandma that I hate Matt.

She didn’t tell me that I should feel lucky that I am normal. Nor did she say that I shouldn’t be upset since Matt can’t help it. She didn’t tell me that Matt has it harder either. Those were the things that Mommy and Aunt Grace said.

She didn’t push me away to comfort Matt.

Instead, Grandma picked me up and rocked me in her gentle arms. She sang me beautiful songs until my tears dried and I fell asleep.

I am thankful I already lost my mind..

Things have been crazy busy around here. I have been running around like a chicken with its head cut off. Or should I say turkey? Would that be more seasonal?

I am getting ready to have Thanksgiving at my house.

Tomorrow Angel is coming home from college. This has been the first time she has been home since August.

The guys just got back from deer hunting. My son Alex shot his first deer. He also played a trick on me. I asked him to send me a picture of his buck and he sent me a picture of a Bambi. Horrible thing to do. Then he told me it was too little to keep. He said he was going to throw it into the woods for the wolves. I was mortified.

He was just kidding. He found a picture of a Bambi online. Real funny! Not…He has my awful sense of humor…Oh deer..

I knew that they would get a deer because last month we got a quarter cow and this week we are getting a half a pig. The freezer is full…so of course the guys wouldn’t come home empty handed.

Alex wants his new girlfriend to come over for Thanksgiving. I feel like it is too soon since he just broke things off with Baylee. I wanted some explanation to why they broke up. Alex told me that Baylee was fake. He said that she was lying to us the whole time. He asked me if I really believed that Baylee didn’t drink at the underage drinking party at the cabin. She portrayed herself as a reluctant party goer…almost like a mother hen…or a nun. Paul and I wanted Alex to pay her share of the party damage fees. All this time he was covering for her lies..

The new girlfriend looks a little like Baylee…so the family we haven’t seen in months might think it is her..

Paul’s step-dad, Darryl, will be here. This year his wife passed away. Lately Darryl has become obsessed with online dating.

My uncle Rick will be in attendance as well. He is newly divorced for the holidays and has nowhere to go. On a side note, uncle Rick and his ex go to the same gym as I do…I have to budget an extra 20 minutes into my workout now to listen to them bitch about each other..

Then my mom will be here…my brother Matt…my brother Luke and his family. My antisocial dad will stay home and my brother Mark is not coming. This will be the first time that Matt is around Luke’s girls since he went off of his anti-psychotic meds and wanted to kill them.

Thanksgiving will be the test to see if Matt will be okay around Luke’s daughters again. I think things will be okay. His hallucinations are gone and so is his fixation with the girls since he is medicated again. We have been dealing with this for so many decades now, but it doesn’t make things easier.

So, I will be hosting Thanksgiving at my house.

Last month I had my daughter Arabella’s confirmation at my house.

Next month I will be hosting Christmas and New Year’s. Time to buy a bigger house if I have to do all of this party hosting..We are crammed in this cracker box house tighter than ten boxes of stuffing in a small turkey..

If you don’t hear from me for a few days…I am cleaning, I am cooking, I am party hosting…

Hopefully I am not prying my brother Matt off of my nieces, explaining how Alex’s girlfriend is not Baylee although she looks like her, wiping away tears for the first holiday without my MIL Martha, talking with Darryl for hours about online dating, or commiserating with Rick on how much his ex sucks..

Oh, did I mention that almost everyone has a special diet??

Have a happy Thanksgiving! Gotta love my crazy family! Thank God I already lost my mind or I wouldn’t be able to deal with all of this!! There is never a dull moment.

Maybe you are lucky to have a prim and proper boring family. That was never my lot in life…

You will hear from me in a few days, unless I have the nervous breakdown I so rightly deserve…or maybe a midlife crisis…I just can’t decide!

 

The nursery

A few days ago, I posted about trees. Sounds boring, I know. Sometimes I have an idea that scratches around my mind that I want to write about that leads to more ideas, and yet more until it takes root.

Today I am going to write about trees again and family roots.

I just want to be upfront with you right away…I do not have a green thumb. I’ve killed every house plant that I’ve ever had. Once I got a chia pet for Christmas. I ended up regifting it because it was too much pressure.

My grandpa had a nursery located on the edge of my parents property when I was growing up. Most of the trees in the photos that I posted the other day were of trees that came from my grandpa’s nursery. My grandma came to my house and helped me plant those trees. My grandpa passed away the year we bought our house. Even my grandma has been gone for almost a decade now.

We are thinking about moving in the next year. It seems silly to say that one of the things I will miss the most is my trees. It is one of the last connections I have left to my grandparents now. I remember painstakingly deciding where to plant the trees with my grandma.

Thinking about the trees again made me think about growing up. Oftentimes my grandpa would remove the trees that weren’t thriving. He would put them on a pile to discard. When I was a young girl, I decided I would rescue one of the dead trees. It was a little pine tree with brown needles. I planted it in my parents backyard. I watered the tree everyday, but it still looked dead.

Then one morning I went outside to check on my tree and it was alive with leaves of brilliant green. I did it! I saved my tree. Things went downhill after that with my green thumb. I don’t know who replaced the tree. It probably was my grandma, but I will never know for sure..

Then my memories started taking me down a darker path.

Strangers stopping by to buy trees. Grandpa coming over in his truck. The smell of fresh dirt. Fertilizer. The musty smelling plastic bags the trees were sent home in.

Strangers in our yard. We must be alert. We worry. Are there children? Are there little girls? I give my mother a report. Keep an eye on Matt while I walk over. We could prevent Matt from going places where he could hurt someone, but we could never warn the strangers that came into our yard unaware.

I never felt safe. It would probably shock you if you knew how many times we had to worry about the safety of outsiders. My brother Matt is violently autistic/schizophrenic. We couldn’t control Matt but we did our best to push other people away to protect them.

Today I sit in public places with my back to the wall…always watching. I notice when patterns are off. I do everything I can to be a protector although I am never needed anymore.

It is strange how thinking about something neutral like trees could take me back.

Inoculation

Today I got inoculated. I like the word inoculation, it sounds so much better than shots, immunizations, or vaccinations. I just don’t like the action.

Since Paul and I are going to Thailand in a few months, we decided to book an appointment with the travel nurse. I only ended up getting 2 shots, Hepatitis A and the flu shot. What happens if you have to sit next to someone for 20 hours on a plane that has the flu? A ruined vacation..

We got a prescription for typhoid pills that we can’t take with alcohol…so no drinking for 10 days. I’m already going to use that as an excuse to not attend a party that I really don’t want to go to.

The Wisconsin immunization registry pretty much pulled up a blank on us. It registered our Tetanus shots from 2012, that’s all.

We both had chicken pox. My mom said I got it really bad in 4th grade. I had chicken pox in my mouth. My eyes swelled shut. I still have a few scars. I think that Paul even had a small pox shot.

I don’t think I had my last MMR shot. There was that couple years that I didn’t attend school. I vaguely remember needing to have a booster and telling my mom I didn’t want it, so I didn’t get it. That is how I remember it, but I’ll admit my memory of my high school years is a bit hazy now.

My mom suspected that the MMR shot caused my brother’s autism back then. Of course, that is not saying much. She questioned every little thing she did and didn’t do back then.

I have always been on the fence about shots myself. This is the first time I’ve ever had a flu shot. I don’t like taking medicine. I wanted a totally natural childbirth. To tell you the truth though, if it was as natural as I wanted it to be, I probably would’ve died. I hate taking medicine unless it is absolutely necessary.

The whole vaccination autism scare came out in full force when my oldest child was born. What was I to do? What if it did cause my brother’s autism?? What information do I trust?? Do I trust the huge pharmaceutical companies?? Do I trust the doctors that are supposedly getting big kickbacks from the drug companies for pushing vaccinations??

What do I do when it affects my family??

To tell you the truth, I really don’t have an opinion whether or not vaccinations cause autism. It didn’t even matter to me. What mattered was that if there was even an iota of a chance, I felt that it would be prudent to be cautious. My children received all of their necessary vaccinations, but on my timeline.

Some people looked down on me for the decision I made.

Did I know that I was hurting my children??

Did you know what it was like living day to day with a violently autistic brother?? Did you see how this tormented our family?? No, because I never bothered to tell you…

It was the late 90’s and early 2000’s…we didn’t know. We still don’t know. I didn’t want anything happening to my children. I didn’t want them to get autism. I didn’t want them to get measles.

I think that I made the best decision with the information I had available to me. I am still hesitant to trust other people when they try to tell me what is best for my children.

All these thoughts whirled through my head as I was nervously waiting to be inoculated…

 

Journal 5, part 2

5/2/1991

I’m only going to eat one meal a day or else I will be sick. When I was younger this worked all of the time until I felt better..

It is true that sometimes the needs of the ‘normal’ kids get swept under the rug when there is a special needs child in the house.

I know now that I have been a lifelong sufferer of GERD. I didn’t know this as a child. All I knew was that I had stomachaches all of the time. When it was really bad sometimes eating made me feel sick. I felt like I had a fire in my chest. Eventually the acid crept into my throat, gave me frequent canker sores in my mouth, and wore down the enamel on my teeth as a child. My parents threatened to take me to the doctor if I didn’t eat, but they never did.

My brother Matt also has GERD which was made worse by his gagging from Tourette’s. He frequently threw up his breakfasts. There was a time that the valve completely closed between his stomach and intestines. He couldn’t keep down any food and had to have the valve surgically opened again. In the meantime, he dipped below 90 lbs and he almost died.

Whose needs were more important??

Not only did Matt suffer from GERD, he also has autism. He engaged in a lot of self-stimulating repetitive behaviors such as rocking and flapping his hands together. At one time he had to wear a helmet on his head because when he became agitated he would hit his head with his fist. He was hypersensitive to touch. He would scream when he had to have his teeth brushed. He had to be sedated to go to the dentist for cleanings. He would only tolerate having 1/4 of his teeth cleaned at a time and eventually his teeth rotted. He has difficulty communicating and understanding emotions.

He suffers from Tourette’s. He would gag when eating and constantly make sticky saliva sounds with his mouth. His body would twitch and he repeatedly blinked his eyes.

He suffers from schizophrenia. He hears voices that tell him to hurt little girls. Sometimes the voices terrified him. He had nightmares. He would talk to the voices and laugh at the evil things they would tell him to do.

He is intellectually impaired. He cannot read, write, or do simple math.

He has issues with anxiety.

Matt made anything that my brothers and I struggled with minor in comparison.

There was a 3 year period when Matt was not allowed to go to school because of his violence. After that time period, he had very limited exposure to the outside world up until he was placed on an anti-psychotic medicine that eliminated the voices and the violence towards self and others.

My mother did not want my brother institutionalized in a place for the violently mentally ill so she pulled him out of most situations where he could hurt others. That did not stop him from being violent towards me at home. He grabbed a knife and threatened to cut my eyes out. He punched, scratched, kicked, bit, and pulled my hair on a regular basis. Who protected me?? Who reported his violence against me? No one.

I want to say that I handled it like a trooper, but I did not.

I withdrew into myself. I became very depressed. Although childhood goes by fast, it seems to take forever when you are being abused. I wanted out. I cried myself to sleep at night. I woke up crying in the morning after being awoken by nightmares.

I held my body tight like I was always bracing for impact. I cowered like a dog that was beat too much. My shoulders were held tightly up to my ears. I suffered from insomnia. I fell asleep easily but was typically awake from 2 to 4 AM. In the middle of the night, I suffered from muscle pains. I had to wrap pillows and blankets around my legs. I think my muscles were finally trying to relax in the middle of the night and it hurt.

I suffered from anxiety and worry. I was angry. I developed structure, rituals, and routines to feel like I had some control over my environment. For awhile, I was a compulsive hand washer. I washed my hands so often that they cracked and bled.

With everything going on at home, I couldn’t concentrate at school. My grades were horrible. I was put on a high dose of ADD medicine. It helped me focus, but made my skin crawl. I scratched my skin until it bled, especially on my scalp. I scratched until I pulled out scabs with big clumps of hair.

I was exhausted most of the time.

I was a mess.

That was a long time ago.

I survived.

I am strong now.

I am healing.

I feel ready to fight my demons.

 

Journal 5, part 1

12-10-1990

Tonight is my choir concert. For awhile my mom wasn’t going to go because Matt was reacting. But she is going to go.

Events were always difficult for my family. My mom always wanted Matt to be included in all of the family activities. We never really wanted him to attend our special days. We were afraid that if he hurt someone that would mar the day forever in our memory. Plus we wanted some time when we could be the focus.

How would we feel if a special day was ruined by Matt attacking someone? It would make for an unforgettable choir concert, graduation, or wedding day.

My parents typically took turns attending events if Matt was unable to go. My dad would often times stay home with Matt because he hated social events.

But if Matt was ‘reacting’ bad enough, my mom would stay behind. She didn’t trust anyone else to take care of Matt. If Matt hurt someone, he could sometimes be hurt in the process of restraining him.

For example, if Matt was at the roller rink and attacked a small girl…what do you think her father would do? My mother said that no one could love Matt like she did.

Usually there were early warning signs of reacting that we became hyper vigilant for.. His ears would turn red, his fists and teeth would clench, and his pupils would constrict giving him wild eyes. Sometimes these reactions would last for a short time and sometimes for several days. Sometimes it would happen unexpectedly and sometimes we just knew..

The longest it usually lasted was 2 days until it slowly faded away. For 2 days, Matt would scream and be agitated in general. He would often hurt himself or those around him. He would keep our younger brothers, that he shared a room with, awake at night by rocking his body side to side in his bed violently. During the day, he would run in place flapping his hands together sometimes violently enough to make his chin bleed after his hands rubbed against it repetitively.

He had to be watched constantly because sometimes he would run away. Or he would do deviant things like overflow the sinks. Most of the time he muttered to himself. He would laugh after hurting someone or doing something wrong.

After the reaction was over, Matt would sleep all day and all night.

My mom went to great lengths to try to explain Matt’s strange behavior by saying that he was reacting, or allergic to things.

Matt attacked the stranger in the roller rink because the music was too loud.

Matt attacked the girl because she was wearing perfume. The perfume triggered it. We were no longer allowed to wear or have anything with a fragrance in it. No hair spray, no nail polish, unscented soaps…we even had to dip our toothbrushes in peroxide and baking soda to brush them. I found this to be very restrictive when most girls my age used a bottle of hairspray a week.

Sometimes it was auto exhaust. My mom no longer allowed the cars to be parked in the garage. They had to be parked at the bottom of the driveway. If the wind was blowing in a certain direction, we had to shut all of the windows. My mom would panic if we had to follow another vehicle closely on the road, the exhaust could seep in and set Matt off.

Maybe it was gluten, dairy, and artificial colors. My mom started buying Matt organic food. She went to great lengths to make separate meals for Matt that no one was allowed to eat.

Maybe it was the wood stove. That furnace was removed.

Maybe it was the formaldehyde in the curtains. They were removed and old blankets were put up.

I could probably list at least 50 or more things that at one time my mom thought were triggers. We had to painstakingly follow rituals to try to stop the triggers from eliciting a response in Matt, but it never worked.

My mom took Matt to almost every doctor in the state and to several doctors in other states. She had faith that he could be healed from this affliction. As a child, I believed that he could be healed too. We hung on to every hope that he would be completely healed.

My mom took Matt to physicians, homeopathic healers, allergists, and even a lady that read auras. But nothing worked.

I fear that what I am telling you makes my mother sound like she was completely crazy. But I want to assure you that my mother was the sanest person in the house. In her natural state she is an easy going…go with the flow kind of person…She is very compassionate, sensitive, and loving…But with Matt, my mother was fierce and determined to do anything she needed to do to protect him…to feel like she had an iota of control over something that no one had any control over… and to seek answers while holding on to this irrational dream that some day she would wake up and he would be normal.