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A special (needs) Mother’s Day

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Last weekend I told you that my mom left early before she could celebrate my son’s accomplishments at state by going out to eat with us.

What I didn’t tell you was by the time she got home my brother Matt was sick. He was sick enough to lose 9 lbs in less than a week. He couldn’t keep down any food. He was also having involuntary movement of his jaw. He was anxious and restless without much sleep.

My mom scheduled a doctor appointment for Matt after he was sick for several days without improving. The doctor thought that he was going through withdrawal.

Last month Matt’s liver was showing signs of stress so it was decided that he would go off of his anti-psychotic meds that he was on for almost 20 years.

Apparently his psychiatrist took him off his medication too fast. Then he retired and moved to Florida without a replacement.

I feel really sad about everything that happened over this past week, not just for my brother but for my mother too.

I really want to spend Mother’s Day with my mom tomorrow but it seems like she is too busy mothering.

Is it selfish of me to want my mother to myself? To want her to fully participate in my kids events?? Should I want that when my brother needs her so much more??

When I was on speaker phone with my mom a few days ago, I could hear Matt throwing up in the background. I could hear the pain in my mom’s voice.

To be honest, I just want to run away from the whole situation..

I want to be able to spend the day with my mom tomorrow, but at this point I am not sure what is going to happen..

Sometimes I even feel guilty for wanting my mom’s time.

Mother’s Day is the least of her concerns right now, but that doesn’t mean that I don’t want it to be special for her…and not in the special needs kind of way..

What I truly want for Mother’s Day

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What I truly want for Mother’s Day…

Baby, I want to hold your tiny hand in mine one more time.

I want to gather you back into the safety of my nest.

I want to be able to kiss your owwies and take away your pain.

I want you to still think that I have all of the answers and that the world is a good and magical place.

I want to sit you on my lap and read your favorite stories…I can’t seem to remember the day it all ended.

I want to laugh off the people that say it goes by so fast as I hold a crying baby in my arms.

What I truly want for Mother’s Day…

Mother, I want to see the excitement in your eyes as I give you my scribbles on a piece of pink construction paper.

I want to see the beauty of your young face and the natural color of your hair. I don’t want to see signs of you slipping away from me.

I don’t want to think that this could be our last year together like last year was for my husband’s mother.

I want to think that the little things I do or say give you lasting happiness more than flowers or a card someone else wrote on this one day of the year.

What I truly want for Mother’s Day…

Grandma, how I long to hear your voice again…to hear you sing like a bird…to tell you that you gave my daughter your gift. I want you to fully understand the influence you have had on my life and how that impacted my children.

I want to smell fresh cookies as I walk into your house and know that you made a special batch just for me.

I want you to answer the phone when I call.

I long to see your house again, the way it was before the new people moved in.

I want to smell your sweet perfume, even the scent that remains in the half empty bottle is beginning to fade.

I wish you could walk alongside of me on this journey again..

This is what I truly want for Mother’s Day.

The little waves that rock my boat

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I don’t feel much like writing today. I have been feeling somewhat down and unsettled lately. I’m not even sure why.

Why does it seem that when I lack motivation the normal everyday things seem twice as hard to do and half as enjoyable?

The weekend started out good. Friday night I fell asleep watching a movie. Apparently my body’s idea of relaxing is falling asleep. I also argued with my son that he needed to spend the night at home instead of at his friend’s since he was performing at state the next day.

Saturday my son performed wonderfully by playing a very difficult band solo at state and receiving a perfect score. After playing, the judge asked him if he thought about music as a future career.

It wouldn’t be our first child to receive a perfect score at state and decide to go into music. Oh, just what I need two unemployment musicians living in our basement. I did my part of trying to talk them out of it..LOL. It’s exciting to see them perform, to see where it might take them..

Then there is child number 3. She dropped out of band this year. She is starting to feel pressure from everyone to live up to her siblings’ success in music. She laments over being average.

Friday night I called my mom to see if she was going to watch Alex at state. Of course, the day before is too early to tell which way the wind is blowing and make a decision about whether or not to go. When I called my mom she was in crisis mode. Someone new is working at the group home and neglected to fill my brother’s prescription before he went home for the weekend. My mom went to pick Matt up and was notified of this 5 minutes before the pharmacy closed.

My mom did end up going along to state. She was my back up recorder of the performance. Good thing since my phone crapped out and decided not to record anymore after about a minute. I wanted to take my son’s instrument and smash my phone but that would be rather distracting.

After Alex performed at state, we decided to take him out to eat at the restaurant of his choice. We had a group going including Alex, our youngest Arabella, my husband Paul, his step-dad Darryl, my mom, and the accompanist. For our large group, we had to wait awhile for our table. My mom left right away stating she had to give Matt his medication and feed him. We all wanted her to stay. But no one else could take care of Matt like she can, not even my dad who stayed home with Matt, so she left.

I felt a little sad that she left. I watched Darryl and the accompanist laugh and have fun and thought that it should be my mom too. She shouldn’t be tied down for life.

Maybe that is the point that everything ended for me.

I felt hurt that my mom left. I took everything personally that people said to me.

My husband and son teased me about hanging towels on the clothes line. They don’t like their towels stiff, but I do. I was probably overreacting, but their comments upset me. It made me feel unappreciated. I felt like they wanted me to change the way I do things which I refuse to do. I find myself to be just as stubborn, stiff, and unbending as the towels.

Things spiraled down from there.

It is hard to live in a house where everyone knows my weaknesses. I am a bit of a control freak. I already told you that I have this ‘rule’ to turn the lights off in every room after I leave it. Sometimes people will do things to bother me like leave the lights on in an empty room or turn the lights on after I turn them off.

Why should I be allowed to control the lights in a house other people live in?

How can I remain calm in life’s big storms and still let little waves rock my boat?

It’s ridiculous I know…The meaningless things that I do to feel like I have an iota of control over my life. My crazy rules helped me through times of chaos and discord. I can’t seem to let go now even though I don’t need them anymore. Taking the little bit of control I have away from me or complaining about the stubborn way I do things really bothers me.

Who wouldn’t like a lady with a laundry fetish?

What they don’t realize is when they take my security blanket of control away from me I feel like I am once again that frightened little girl. No one seems to understand. I barely understand it myself.

Will I let my relationships get wrecked over lights and laundry?? Probably not, I can’t even fathom why it would bother me so much.

 

Life on the high C’s

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I spent the last couple of days in supervisor training for work. For the class, we took the DISC personality assessment.

If you are not familiar with it, it goes a little like this. The D’s are the dominant type, that is why the D is the first letter on the assessment. The I’s are second because they sold the idea that they should be. They are the chatty, loud, and persuasive type. The S’s are the agreeable people, they are happy being wherever you put them because they are chill. Then the best is saved for last, the C’s (you know where I rank). The C’s are the type that follows rules and makes sure things are done right.

I am pretty sure that I was raised by two high S’s. You would think that it was an incredibly peaceful environment almost zen like. Sometimes I wonder what my parents were like before I was born. Did they sit around meditating for hours in perfect harmony? I’s sure that all fell apart after I was born. Then within the next 5 years my three younger brothers were born. The second born child, Matt, is severely autistic and was violent at times.

What happened to the strong S’s then? What happened to the peaceful people that went wherever the wind would blow them?

My dad shut down completely. He became depressed and silent. When the silence became too loud for him, he would roar. Then he would retreat into silence once more.

My mother turned her gentle supportive good-natured self into a D. It was unnatural. She hated it. She had to become forceful and direct. She confronted people. She became the ferocious mother bear with an injured cub. I feel like through this she really lost who she was because her hand in life forced her to be someone she was not.

Maybe it is no surprise that I am a high CD…if I were to break it down I am probably 80% C and 20% D.

To tell you the truth, sometimes I try to disguise myself as a S. Growing up in a house of S’s sure makes it easy to do. I know the language even though it is not my own. I even own a wide variety of bohemian clothing. Sometimes I pretend to be someone I am not so I don’t scare people off right away.

Seriously, who likes a high C or a CD mix? Who likes the rule follower?? Who? Oh, and I don’t follow just any rules. I certainly don’t set my cruise control at 55 mph in a 55 zone. Seriously, I don’t want to be controlled by cruise control! The D in me always urges me to drive faster. I don’t have time to drive slow!

I follow my own rules. It is very important to me that everyone in the house turns off the lights if they leave the room. Did you turn off the lights? Sinner! You are wasting electricity. My husband says, “Alissa, how much electricity do you think your hot tub uses?”

How many people like the blunt, direct truth delivered sometimes without tact? Who likes a stubborn rigid all or nothing thinker?

How many people like it when I clean up after them when they are not done eating or using an item?? Oh, I won’t accept any help either because I am the only one that does things right. Then I get mad that no one helps me.

How does it feel to walk with mud on your shoes in a cleaning freak’s house? How does it feel to watch your neighbor run 20 miles around the neighborhood on a Saturday morning while you watch TV in your pj’s? Does it make you feel just a little bad about yourself?

I continuously have a harsh task master in my head chanting the mantra ‘Get it done! Get it done! Get it done!’ at all times. I can’t sit still without thinking about the things that I need to do.

I never miss a workout when I just don’t feel like it. My calendar is booked through October.

Sometimes I am as jealous of your ability to relax as you are of my drive to accomplish challenging tasks.

My intensity, my discipline, my drive sometimes repels more people than it attracts.

Good thing for my sense of humor!

That’s my real life navigating as a high C.

I absolutely love being me!

 

 

 

 

 

Heading home again too

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I’m on my way home again, back on the train. Apparently my husband published my first few scrawlings as he tried to plug in his phone to charge with my charger. Now I’m feeling annoyed and disappointed that the trip is coming to an end. Please just stay on your side of the seat until I am done writing now. It wasn’t like we were making out or anything…Honestly!

The last time we spoke, I was on the train to visit my cousin to compete in an 18 mile trail run. We finished the run in less than 4 hours. Good enough for me! 

In preparation for the big weekend, we went beer and wine sampling on Friday. I got a necklace to collect tags from different breweries we had samples at. My favorites were Pomeranian Beast reminding me of myself, a psycho insane runner of German heritage. I also liked Kimchi Stout, the sauerkraut beer..I briefly talked about starting a relay team named Medals and Beer Tag team. It didn’t go far..

We watched as the weather forecast promised rain, lots of rain. I just grabbed my very old running shoes, the ones with the sides wearing out with almost no tread. Not very gripping for a mud slide. But we lucked out. My husband was along. Did I mention that he is the patron saint of fair weather?? Well, I guess I am not sure about the whole saint part. Seems like ever time he is around, the rain stops. He signed up to join us on the 5 mile trail run on Sunday. We were supposed to get an inch of rain. We didn’t get wet at all until less then a minute after we all crossed the finish line… I never once had a drop of rain fall on me during a race and I’ve run plenty of races. 

About the trail run, I liked it. It was a lot different from road racing. The first half mile, I was trying to get away from the woman with the beagle puppy. It brought flashbacks of the time I tripped over my beagle trying to avoid a savage dog that jumped out of the ditch at us. I still have the scars. I could show you but I might scare the people on the train. After I avoided the dog, I had to get away from two women talking about their marital problems. Or maybe I should say one woman, she did all of the talking. She went into great detail about her husband brushing his teeth. Maybe if her conversation was more interesting, I would’ve lagged behind a little.

Seriously though, about trail running. It required a little more grace than road running. There was one woman that was constantly tripping over every branch and limb on the trail. It required a lot more motor planning and thought. There were times that I was coming down a hill that I almost imagined I was flying. The woods were beautiful and every step was different from the last. Just as my body was getting tired from running one way, it was time to switch to using another muscle. So it wasn’t the monotonous repetitive motion of the road.The trail was narrower than any road race I ran. There were also less spectators as the route was more remote.

My cousin and I ran a half marathon the first day and 5 miles the second. I found myself having a harder time running the second day. I felt like I was carrying around 50 extra pounds. My legs felt like lead. My mind was strong, but my body didn’t physically respond like normal. 

After the half marathon, I tried acupuncture for the first time. There was a group of people in a room stuck with needles relaxing. Frankly, I would prefer a massage myself.

After the race was finished, Paul and I went to Detroit for the first time. It was cool and rainy. I felt sad for the homeless people huddled under the highway overpass. We toured Belle Isle and stopped for supper at Greektown. I had such a great time away that I’m sad it’s over. 

I crossed a lot of stuff off of my bucket list in this short trip…an Amtrak train ride, trail racing, a trip to Detroit, acupuncture, eating authentic Greek food, and publishing a post in error. Lol. It’s been fun! 

Autism’s sibling, journal 3 part 2

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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.

 

Autism’s sibling, journal 3 part 1

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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

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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..

Going bananas

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This year I signed up an 18 mile trail race, a marathon, an Olympic triathlon, and a Half Iron. This year is going to determine everything…whether I go to the next level or not…

The countdown is on…9 more days until my first race of the season…an 18 mile trail run…probably the least grueling race of the season..

Yesterday, I went for a 6 mile trail run with my friend Lisa. Frankly, I’m not sure if I would have the courage to run it alone. It seems creepy and scary out in the woods alone. I feel like I could become the victim of some twisted fairy tale villain when in reality the only thing that could be twisted besides my mind is an ankle. I fear that pedophiles lurk in the woods out to find a hapless female runner alone. I should probably be more worried about being attacked by ticks..

Lisa is just afraid of bears, black bears.. Yesterday as a woman was exiting the trail, Lisa asked her if she saw any bears…Lisa it is only a sign posted to prevent frivolous lawsuits.. We were well into the run, when we saw something black coming towards us growling through the woods..Oh my gosh..a bear! But it was only a man dressed in all black grunting as he pedaled towards us up over a hill. For a few minutes, I thought I would have to outrun Lisa…no easy task…We must have laughed a half mile about the ‘bear’ we saw in the woods.

All joking aside, we fell into a deep conversation about competing…Those are my favorite conversations…lots of laughter followed by serious conversation..

How is it that we find ourselves never satisfied with what others would consider big accomplishments??

Why am I not happy to have run a marathon if I don’t feel like I did a good job?

Instead, I always want to do better. I always want to accomplish more. More, more, more…I want better times, more difficult challenges…But will that satiate me or will I never be fulfilled?

Or maybe an even deeper question for reflection is…why am I not satisfied with the difficult things in life that I’ve already done?? Why does the big stack of medals lose its luster? Why am I driven to strive for more?? Why am I not content living an ordinary average mundane boring life??

Nevertheless, I am very excited for the start of another racing season…the struggles…the obstacles…the goals…the medals…the achievements…

Oh, and the ‘free’ banana afterwards…

That right there is the reason I do all of the crazy things I do…I’m going (for the) bananas! That is what a lot of people seem to think anyway…

Places where the past and present collide

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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.