Autism’s sibling, journal 3 part 1

Now I am ready to tell you about myself, my family, and you will understand everything..

Everyday Matt would be violent. He would bite me and claw up my arms. I have the scars to prove it, although they faded a little because he’s a little better. But it was awful. Everyday he would be uncontrollable. It was always me he hit.

Once he had this thing about men with beards. He would scream and be awful. Once Matt, mom, and I went grocery shopping and Matt saw a guy with a beard. He got really mad. When mom was checking out, she had to hold him down on the floor because he could hurt someone. 

Or how about the time when we had to move the knives because he took one out and threatened to stab my eyes out.

Or when my mom got a bloody lip because he threw his head back on her. She started crying and it really upset me when I heard her say, “What kid would do this to his mother?”.

The stress was unbearable.

I couldn’t have any friends over because they might have on a fragrance and he might react. So you could say that I never really had many friends over because he would hurt them or me. I couldn’t wear any hair spray or anything with a fragrance.

Other times he would hurt small kids.

We had to do different things. We had to get unfragranced soap, shampoo, deodorant, and laundry soap. We had to close the windows when there was an east wind because the auto exhaust would bother him.

He couldn’t leave the house. He had to eat special foods. We never had anyone over because Matt might hurt them.

He can’t read and when he was younger, he couldn’t talk. He would do weird things like grind his teeth and hit his head. He broke about 5 stereos, one of mine, one of mom’s, and the rest were his.

He couldn’t go swimming because of the chlorine. He would be wild for two or three days in a row. He threatened to run away.

Alissa, 1990

Over time, I have forgotten the magnitude of the stories written by a younger me.

To be honest, something has been scratching at my mind since I stirred up my demons.

My last post was on locker rooms of all things..Talking about locker rooms seemed to bother me more than it should have..Memories swirl through my mind. My mom taking a too old Matt into the girls locker room? There weren’t options back then like there are now. A too old screaming autistic boy in the ladies locker room would have been memorable back then, but I don’t remember more than a flicker.

There are whispers quietly echoing through my mind, but I can’t make out the words.

I am nervous as I type.

Do I really want to remember?

Locker room talk

I’ve spent a lot of time at the gym the last few months. I have become well acquainted with the locker room.

The locker room that I use at the gym is for adults only. Of course, rules aren’t necessarily always followed. It really drives me nuts when a mom brings in screaming toddler. They have a separate parent child locker room for that. Seriously, I work out to relax!

Or better yet, when a mom brings in a little boy that gawks at the naked ladies. They have a separate locker room for that too, mixed gender parent and child.

Seriously, I get it. I was once the mom that anxiously awaited outside the boys locker room and men’s bathroom for my son to emerge. It was scary the first few times…Is that your little guy in there? I helped him reach the paper towels. Don’t worry, he should be out soon..

It has become a pet peeve of mine when these rules are not followed. Frankly, it doesn’t bother me if teens use the women’s locker room. Of course, it may be scary for them to view a real woman’s body. I have yet to see anyone that looks like a Victoria’s Secret model stumble in. And these are the women that work out at the gym!

Not that I sit around and look or anything…

I’ve always wondered why when the locker room is totally empty except for one person that I end up having the naked lady using the locker next to mine. It happened last night. Uncanny…no, not really..lol.

Of course I always use proper locker room etiquette. I look with my eyes to navigate to my locker. If I happen to see someone naked, I drop my eyes to my feet like I am in an elevator. I may even hum elevator music softly in my head.

Sometimes I even use the locker room when the group of developmentally disabled come in from the group home. It doesn’t really bother me. Although it was a little uncomfortable when the first naked lady came up to me and complimented me on my  physical attributes or articles of clothing as I was putting it on. Hello, I don’t have any pants on and you’re naked.

Seeing the very nice group home ladies always reminds me of my brother…This is where the story gets very twisted…I’m in the locker room naked thinking of my brother! It makes me sad to think that my brother could be standing in the men’s locker room doing the same thing. It bothers me that his responses are not socially appropriate…like farting in an elevator. These ladies are probably someone’s sister…They don’t know what they are doing, but we can see..As a special needs sibling, I understand. I feel compassion and respect for them although it hurts me that they act that way. It’s a strange feeling..

It reminds me of other times…my daughter’s high school play…Matt in the bathroom using the urinal…grunting (Tourette’s) doing pelvis thrusts to dry himself (sensory issues)..a classmate freaked out…laughing…a weird man in the bathroom..hitting on me?…odd behavior…should I call the cops?…wouldn’t be the first time…my brother…no dignity…it hurts.

Sometimes the locker room is the hardest part of my work out. It elicits feeling of annoyance or sadness. I never expected that..

Places where the past and present collide

The last few days I haven’t been feeling much like writing. I toy with the temptation of disappearing and being totally anonymous again. Strange thoughts trickle through my mind. I worry that my anonymity has been compromised when the phone rings. I get the pseudonyms crossed in my mind. Will I call someone by the wrong name in real life? Will I use their real name here? The boundaries blur…the wires cross…in my mind..

Time zigzags between the past and present…I enjoyed having Angel home over Easter break, but it blurred the adulthood with childhood in my mind. Is she still my child after childhood fades?

We had a bowling party for Matt’s birthday and a family get together for Easter. Right before the party on Saturday morning, I started feeling depressed and a tad bit angry. I didn’t want to share anything with anybody.

I always feel edgy right before family occasions. Matt’s party went great. We had a fun time. It’s just that sometimes in my head the past blends in with the present and I start feeling or thinking the way I felt or thought back then when Matt was violent.

A group of young laughing girls walked by Matt. I remembered the old Matt…the Matt that would attack them…the Matt that would pull their hair and kick them.

Fear trickled through me.

But the new Matt paid no attention as the girls walked by.

I can’t separate the past from the present. The old triggers still flip a switch in my mind that I can’t seem to turn off.

Yesterday, I pulled out another old diary from 1990. This was something I willingly decided to do in my writing process to confront my demons.

But sometimes I fear that this may trigger memories that are darkly hidden. I am afraid sometimes that I won’t be able to handle what I find…what I remember…and the feelings those memories trigger.

It seems insurmountable to me right now. Like running a marathon right up a mountain.

But once I make it to the top of the mountain, I will see things that I have never been able to see before…new insight, new understanding, a deeper knowledge…peace.

Sometimes I need to take a step back to go forward…too see where I’ve been…to notice how far I’ve already climbed.

I want to be able to put the past behind me so it doesn’t mingle with the present anymore. I think it is going to be a long and difficult hike up the mountain, but well worth the view at the top.

Maybe at the end of my climb, I can finally put my demons to rest.

Suppertime sadness

The tool box clanks on the floor…It’s 6 PM…Dad gets home from work…Supper is on the table…Matt and Luke are tied to their chairs with my mom’s apron…otherwise they don’t stay…

Dad bangs his fist on the table…This dog shit you call supper…He roars as he walks away…The TV is turned on in the next room…laughter on the screen…laughter from my dad…my mom cries…The boys struggle against their restraints…

My stomach hurts…I don’t want to eat…But I have to stay until all of my food is gone..

Some harmless, some hidden

Memories swirl around in my mind. Some harmless, some hidden..

…laughter of teenage girls…the lighter flicks…not to smoke…melting the tip of the eye liner so it glides on easier…

I put on eye liner for the show. It goes on easy. It almost smears, unlike the sharp pencil of my younger years…Does anyone use a lighter anymore to soften their eye liner pencils?

…I see a younger face in the mirror, then she is gone..

A harmless memory..

An interview for the show…

Were you ever involved in theater before you came to this theater?

…My dad dropped me off at the theater before work…I was the little girl with a small part in the show…I was dropped off early before everyone else…I walked the trails alone in the woods surrounding the theater, sometimes afraid…but it was only a deer…alone…fun on stage…the big kids…the costumes, the makeup…

…The only time alone with my dad…his boss taking him for lunch…maybe I can go too since I ride with him…laughter…why would I take you??

The next summer, I got a part in another play. I was a princess.

…Reading my lines out loud with the other princesses on the grass in a circle in the summer sun…gone…have to drop out…Matt is sick…my mom left for the summer to go to a hospital out of state with Matt…selfish…how could you still want to be in the show…your brother is sick…so lucky that you are not sick…so lucky…anger and tears…some things are more important…crying…no ride…alone…loneliness…missing my mom…fragments of memories reflect off the surface of the dark murkiness in my mind…

Were you ever involved in theater before you came to this theater?

Just one innocent question scratched the surface…I don’t answer…

It has happened before over the years…innocent questions avoided…the explanations too personal…too painful…they shouldn’t be, but are.

Over 20 years later, I walked through the doors of another theater…in another town…and left all those old hidden painful memories behind me..

Or did I?

Winds of change..

IMG_1988It has been very windy around here the past couple of days. It hasn’t been the kind and gentle whistling wind that reminds me of my grandparents…the wind that whistled through the back window of my grandpa’s pick up truck.

No, it has been the harsh destructive kind of wind. It’s the kind that bends us without breaking us.

As many of you know, this past month hasn’t been the easiest one for us. A month has come and gone since the passing of my MIL from cancer. Over this month, several others have gently slipped away…parents of acquaintances…someone I knew my whole life but wasn’t close to…gone….swept away by the winds of time…loved ones mourned..

The wind blew away the dead leaves..yet left behind the empty nests..

Sickness swept through the house…even the pets had fleas…sometimes I want to burn the house down and start over…cleansing fires…(If the dryer starts my house on fire, I never mentioned this)…

Junk, plastic bags, dirt covered receipts, a mysterious sock, and things unwanted blew away when the whirls of wind billowed by.

My mom called a few days ago. My dad has gout (probably from his birthday dinner) and can’t get around. He missed a doctor’s appointment..

Bows and party streamers wrap around the empty branches. When did we have fun last?

My autistic brother Matt has been removed from all of his medications..after long term use, his liver is showing signs of strain…his numbers are reaching toxic levels…The first few days were rough. He slept only 4 hours the first three days…All of the symptoms the medications were controlling came back…his anxiety…his insomnia…his Tourette’s…the tics….the gagging…throwing up..

Sometimes the wind is so cold that it seems to blow right into my very soul. I have to bundle up to stay warm. I don’t let people see the layers beneath..

All of his symptoms are taking me back to the late 90’s…he was very ill then…he also has GERD, like me…Tourette’s caused gagging…extreme weight loss…vomiting meals, at the table or all over the bathroom floor…or somewhere on the way…usually only in the morning…until his valve closed between his stomach and intestines…then he kept no food down…plus having Celiac…not absorbing nutrients…his body starving…emaciated…yet he had no understanding of what was happening to him..but we did..

Sometimes the winters can be so lonely, dark, and cold. Why can’t it be a breeze? How did we ever make it through?

Yet, while this was happening to his body physically, his mind was attacking his body as well….he heard voices…he became agitated and randomly attacked people…he was violently autistic…the main people he attacked were family members….my mom…myself…as he was kept out of public as much as possible…for awhile, he wasn’t allowed in the public school because of his violence..

Why is it that the season before spring is so desolate and devoid of the hope of the warmth to come??

My wedding day in 1997…I told my mother I didn’t want my brother there…It was hard…Mother, I would be crushed if Matt attacked a wedding guest…It would ruin MY special day…I felt horrible about it…We took time away on our wedding day to have photos taken with Matt in a hotel room…Matt was so sick, my mom thought he would die…I said he couldn’t go to my wedding…Matt didn’t go to my brother Luke’s wedding either in 2002…he stayed in a hotel room…I asked a friend to be his caregiver so my parents could attend the wedding…when my brother Mark got married a little over a year ago, Matt attended and was fine…Now will this medicated stability go away??

I saw a decaying leaf fly away in the wind. Are all leaves different like snowflakes, I wonder…

Last weekend my mom told me that I need to write the story of Matt. I almost told her about this and all of the kind folks here, but didn’t. I couldn’t be honest anymore. I would have to protect her. Maybe I will drag out another diary soon…It’s been awhile..

Sometimes the wind is cleansing. It dries up our collective tears that puddle on the ground from the winter thaw. It removes the death and decay from the cold barren soil preparing it for new life.

Even though I can’t see it right now, I have hope that life will be better for us.

The winds are blowing the last few harsh remnants of winter away. Soon it will be spring..

 

 

The weight of my world

I am having nightmares again..two last week and one this week so far..

Last night I dreamed my sister-in-law Emily died. It was right around 2 AM. I stayed up a few minutes and went back to sleep into the same nightmare again. Then for the next 2 hours I continued the dream. Emily died and her little girls were without a mom. It was shocking, unexpected, and tragic. Not only did Emily die, but whatever killed her was contagious and other family members were exposed and might die. I woke up crying and here I am typing a rough draft at 4 AM wanting to sleep, but not really wanting to sleep.

This is a stressful time in my life. I thought I was going to fall into a deep depression after my daughter Angel went back to college. It didn’t happen. Honestly, I have been too busy to notice her absence. 

Work has been crazy busy, but yesterday we hired our new employee. There is relief in sight.

My mother-in-law, still dying and getting weaker with each visit. We have been going to see her as much as possible. It is a depressing and hopeless situation. I feel a lot of guilt because I have been neglecting my own parents. 

All of this brings up guilt from when I was a caregiver for my Aunt Grace. She needed so much care that it took all of my time. I didn’t spend as much time with my grandma whom I was closer to. I often drove by grandma’s house without stopping because Grace needed me more. 

Is this how my mother felt all these years taking care of my autistic brother Matt? I think I am finally getting it. I wanted to spend time with you, but he needed me soooo much more. 

Matt still needs her more, will always need her more. He had a meltdown over Christmas. He went home from work one winter day with his boots on and forgot his shoes at work. He was so worked up that he needed to be medicated. My mom told me about this on Christmas Eve because someday she said I will be getting the phone calls.

The weight of my world is so suffocating some times. 

Not a special Olympics type of story

For many the holiday season triggers memories of joy and happiness. For me, this time of year triggers some sort of post traumatic stress response. I realize that now. Wow, and it only took me 19 years to figure it out after I earned a degree in psychology.

I feel like I am back to normal now, whatever that is..

For the first time in my life, I was able to write down exactly how I felt while I was going through it. It wasn’t easy to relate. I think I have some sort of post traumatic stress response to certain triggers. It sounds absolutely crazy, I know. Most of the time triggers elicit a response of depression for a day or two at most.

I think this happens more often than I realize, but not quite as severe.

After I left my childhood home, I fell into a deep depression that lasted for several years. I also picked up anger and anxiety to put in my baggage along the way.

I don’t blame anyone for what happened.

I remember starting to feel angry last week at Thanksgiving when my mom was giving me a hard time about taking Prilosec for my acid reflux. She really wants me to get allergy testing and offered to pay for it. I have been reluctant. It’s not that I disagree, it triggered memories of growing up.

Matt was supposedly allergic to everything. We couldn’t even have cars parked in the garage because of exhaust fumes. We couldn’t have curtains because of the formaldehyde. For awhile we weren’t allowed to use toothpaste.

Personally, I think that my mother’s response was too extreme. She would have extreme anxiety if Matt was exposed to any allergens. She would scream at my dad if he came in the house smelling like exhaust fumes. She called the nearby farmers and screamed at them if they sprayed their fields without calling her first. She even called the county and yelled at them when they came by spraying the ditches.

My mom seemed to think that controlling Matt’s environment would stop him from being violently autistic. But nothing seemed to stop his violence towards himself and others, namely me.

I think that my mother has and always had good intentions. She is worried that I will die from kidney failure, a supposed side effect from the Prilosec. I will have to tell her that my daughter Angel has already offered me her kidney when mine fails.

My mom was always there for me when I was a kid. She was the one who helped me pick up the pieces of my broken mind after Matt was violent. She also helped my brother Mark out when he experienced a similar response to mine. The task she was given was not easy to do.

I don’t blame my dad, despite his cruelty. He was as much of a victim as the rest of us.

I don’t even blame Matt. If you met Matt today, you wouldn’t believe a word I have told you. He is now docile. By some miracle, he grew out of his violence.

The last time that he hurt someone was 14 years ago. He attacked Angel on her 4th birthday. After he attacked Angel, it was a time of great emotional turmoil for me. I cut Matt out of my life completely for a few years. He wasn’t allowed around my children.

His psychiatrist threatened to have him committed to a place for the violently mentally ill. It was one thing when a child was hurting other children, but it was entirely different when a grown man was attacking children. In response to this, Matt was home bound once again and kept out of public where he could hurt someone and get committed.

I was already feeling edgy about my mom pushing the allergy testing on Thursday. Then my visit with my dying mother-in-law on Saturday made me very anxious. Then the sadness over Angel going back to college and the trigger of the Christmas tree was enough to set me off into this deep dark spiral downward.

I feel horrible about talking to you about this. I wish I had a great special Olympics type special needs sibling story to tell you. I feel tremendous guilt that I don’t.

I haven’t met anyone else who has had a similar experience to mine. If you are out there somewhere, I want to tell you that there is hope. This was the only thing that kept me alive as a teenager and young adult. I prayed fervently and had hope that someday there would be a better life for me where I could experience joy.

I firmly believe that you cannot fully experience joy without experiencing sorrow. I have found that joy in abundance. I experience life at a much deeper level than I think I would have if my life was easy breezy. No small talk here, just the blatant honest truth. There is value in being able to honestly share the sorrow that I experienced this week. I need to accept what I have been through and the emotions that accompany it.

There is hope! If opening myself up and allowing myself to be vulnerable helps just one person hold on for another day, it would be worth it. You are not alone! There is hope…

Trust that tomorrow will be a better day.

 

This, whatever it is..

Last night after writing, I felt restless.

I had an inability to focus and no desire to do so.

I left home.

I walked out the door and drove off without telling anyone I was going.

I drove aimlessly for an hour. I am drawn to places where I once was happy, but are lost to me now. I drive to the house I used to live in when we were first married, to my grandma’s house, or to the sailing club devoid of boats for the winter. Last night I drove by Lisa’s old house. I glanced as I passed and saw children playing inside. I drove along our old running route. Then I drove aimlessly after that.

I had a conversation with God while I drove. Why weren’t you there for us back then God? Why weren’t you there for me? Where are you now? But I didn’t receive an answer. I entertained the thought that he was never there. Maybe there is no God. I don’t know if I believe or trust anymore. My faith is held intact by a small string.

Paul was worried when I got back home. He forced me to talk to him when I would rather stare off into space, be alone, or attack him so he would stay away. I felt flooded with despair. It threatened to drown me. What is my purpose? Why am I even here?

The sadness was relentless, but I fell into an exhausted sleep only to awake hours later from a horrifying nightmare. I dreamed that I went back in time. There was a horrific lightening storm like one I never saw before. The lightening burned holes in the ground and tried to pull me into it. I had no way to protect anyone. My kids were in it while they were younger, I found my little brothers, and relatives that are long gone now. I couldn’t protect anyone and had trouble finding them.

I awoke in absolute terror. I wrapped myself tightly in my blankets to try to feel safe. But the feelings of terror surrounded me for another half an hour. I got up for awhile, unable to sleep. Then I fell back into a restless sleep for the rest of the night.

I awoke feeling nervous and afraid, like an intruder was in the house. I felt jumpy. I know the feelings weren’t true. I was alone, and no one was there..

The memories keep rushing back. Images ricochet through my mind..Sounds echo through my head… I hear the laughter of children on the playground… I hear them mocking Matt.. I watch as Matt kicks the girl at the roller rink.. I hear her screams and her dad’s angry yell.. I walk through the playground with Matt and his therapist trying to see if the laughter of the children will trigger a meltdown to try to help him somehow stop..I hear the cats cry..I hear a music box and Aunt Grace talking..I hear the laughter of Uncle Harold..

The images and sounds haunt my mind. Whispers of memory. Distorted, out of focus, yet somehow real, remembered faintly.

Then I realized that I was back home. I am feeling the way that I felt back then. The anger, the depression, the fear, the insomnia, the nightmares..

Paul said that maybe I should take some time off to rest. But I am going to work…I am following my regular exercise routine…and I am grasping onto my little string of faith..

If I let go, I will surely drown…

 

Lost things/prohibited items

It has been two days since Angel has gone away.

I no longer have anger, that has dissipated into a sadness of sorts..an emptiness..

I decided to make a list of all of the things taken away. Most were directly related to Matt, some indirectly.. I thought that maybe then you would understand why I feel this way.. No one understands.. Maybe my younger brothers.. But these things are too painful to talk about.

The items on this list are things that were taken away, some things forever and some just for a little while.

Things taken away/prohibited items:

  1. Christmas trees
  2. Candles (only allowed on birthday cakes)
  3. Perfume
  4. Hair spray
  5. Nail polish
  6. Anything scented, such as shampoo or lotion.
  7. Tooth paste, for awhile we were only allowed to brush our teeth by dipping our brush into peroxide then baking soda.
  8. House pets
  9. House plants
  10. Cleaning products
  11. Auto exhaust, the cars had to be parked at the bottom of the driveway so the fumes would not come into the house. All clothes items with exhaust fumes had to be removed before entering. All windows needed to be closed if the wind was blowing exhaust fumes towards the house from the road. Following semis was prohibited on the highway.
  12. We got rid of our wood furnace because it was too toxic
  13. Curtains; curtains contain formaldehyde. The curtains were removed and replaced by old blankets.
  14. My dolls, they were taken away for a semester in grade school because I couldn’t focus and got bad grades.
  15. Dairy products, Matt’s food was separated from ours and we were not allowed to eat his. We generally didn’t have snacks, sweets, or foods with artificial colors (anything unhealthy) in the house.
  16. Napkins, they make Matt gag.
  17. Lawn mowers, for a time we had to use a non-gas push mower because of exhaust fumes.
  18. School, we were home schooled for 3 years when Matt’s behavior was too violent to attend school. He had a teacher come to our house.
  19. All childhood friendships.
  20. The ability to relax and feel safe.
  21. Time and attention.
  22. Getting my medical needs met. Matt’s needs were more urgent and important. He required hospital stays, doctor trips to specialists across and out of our home state, which brought on a lot of medical expenses.
  23. Family vacations, technically I never lost this because we never had this.
  24. The use of pesticides of any kind. We were not allowed to wear bug spray. The use of wasp spray was strongly discouraged. The local farmers were told to call us an hour before spraying their fields. After they called, we had an hour to pack our bags and head up north or to grandmas to hide out for a couple of days. If they didn’t call before spraying, we would lock down our house for 2 days or until it rained. Rain purified the air from chemicals.
  25. Going out to eat as a family, I don’t remember this ever happening.
  26. Having both parents attend events because someone had to stay behind and care for Matt.
  27. The freedom to live like a regular teen. I spent my time as a caregiver. I even gave my brother showers.
  28. Permanent markers, glue, stains, and paint.
  29. Bleach, fabric softener, and dryer sheets. I had to scrub my brothers dirty socks in vinegar or lye.
  30. Anything new, new items had to gas out their fumes before being allowed in the house. We also had to run an air purifier and sometimes Matt needed to wear a charcoal mask if there were still toxins in the air.
  31. Newspapers, they had to gas out before coming into the house.
  32. Pipes, my dad used to smoke a pipe in the 70’s every once in awhile. That was no longer allowed.
  33. Teflon coated pots and pans.
  34. Strong emotions, that set Matt off.
  35. The ironing of clothes.
  36. Toys or plastics with toxic scents.
  37. Sometimes we would leave to go somewhere, then have to turn around and come back home because Matt would have a meltdown.
  38. I had to drop out of a play I was in because Matt was in the hospital.
  39. Having my boomboxes destroyed.

Then there were other things…things not easily categorized. Sometimes Matt would run away from home. He would run off into the woods and we couldn’t find him. He would hurt himself and hurt us. We have bled and were bruised. He turned on the water faucets and flooded the house. He kept my brothers up at night and sometimes slept all day. He would have uncontrollable fits of rage.

People called Matt demon possessed..

That is why I hated my life. I wanted to be normal, boring even..

Is there anyone out there who understands?? Anyone at all? I didn’t think so. I feel so all alone.

There are just some demons that can’t be outrun.

I can never look back and consider anything about my childhood normal. Looking back is painful. I avoid telling people about this part of my life..

Why am I telling you?

I want someone to understand my tears.

But more than anything, I would love to erase it all and pretend none of this ever happened.