Siblings

Childhood Christmases in a (chest)nut shell

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Childhood Christmases in my mind were perfect. Except for that one Christmas that we aren’t going to talk about today. It was as if everyone knew how difficult the rest of the year was so they did everything possible to make two days of the year perfect for my brothers and I, our birthdays and Christmas.

My grandparents had a small Thomas Kincade like house. It was warm and cozy on the inside while cold winter storms raged outside. Icicles hung from the porch and garage roofs dripping droplets of shattered ice onto the walkways, one last obstacle against the warmth that beckoned from within. Upon entrance, steam whisked away into the frigid air from the kettle of boiling potatoes next to the open door. The aroma from the ham cooling on the stove top next to the potatoes was intoxicating. Grandma had a counter full of food, homemade pies and cookies too. Every year grandma had a chest cold. She coughed and coughed though she didn’t seem to mind. Soon Aunt Grace showed up with her brother Harold. Aunt Grace always brought cranberry sauce and the fruitcake that my brothers and I didn’t like to eat.

I was always first to ask if we could open our presents right away. Grandma always said “no”, but we could look inside our stockings that were hung over the fireplace. My brothers and I each had a stocking that contained our favorite candy. There was a tiny stocking for grandpa hanging in the corner that held one peanut. What drew our attention the most though were the boxes of wrapped gifts under the tree. We were always peeking in hopes of finding a big box with our name on it. My grandparents cut their own Christmas tree from their tree farm. It stood on top of a large round end table in front of a big picture window. The tree was always lopsided in some way or another, but we never noticed. Grandma always covered the trees with tinsel and old fashioned ornaments.

After lunch, we all sat in our places that we sat in every year to open gifts. Uncle Harold sat in the rocking chair near the fireplace. He always laughed a lot on Christmas day. We didn’t see him a lot the rest of the year because he was always working. I sat on the love seat near the tree. In my memory, there was always 3 feet of snow on the ground with an inch of playful snow that swirled around in the wind. After we were done opening gifts, we would have a fire in the fireplace. Christmas day was the only day of the year that my grandparents used the fireplace.

We always stayed at my grandparents until it got dark. We played with our new toys. The men slept in their chairs. Aunt Grace always made sure that the dishes were done. Grandma put away the extra food and took down the fancy table with the red tablecloth. It was Christmas perfection in a nutshell. Even if Matt had a meltdown on Christmas day, I never remembered that. I couldn’t remember that. To me it was always perfect and magical.

Demons past, present, and future

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

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

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

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

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

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

Disabled family cohesion

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

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

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

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

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

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

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

 

 

The dark unfeeling cardboard box

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When I was a young child, I never really liked school a lot. Sure, there were some bad teachers, some good, and some everywhere in between. But it really wasn’t that. It was never that. It had more to do with Matt, my autistic brother. Being less than 2 years younger than me, I could never get away. The school really didn’t know what to do with Matt. He was the first autistic child to come through the school district. When he couldn’t function in a regular classroom, they cut the library in half to make it a special ed room.

For a long period of time, Matt was nonverbal. Oh, he did scream and cry but he did not talk. He was uncontrollable. His teacher at school set up a naughty box for him between the library and special ed room. Almost every time we had library, my brother was in the box screaming and flailing around. The box seemed high at the time because I was so little. When my class lined up to look at books, the kids could peer into the box. Most of the time the kids laughed and I hated them. I put my feelings in a big box that seemed even bigger than the box that Matt was in. Many times I would rather be trapped in that empty box devoid of feelings, life, and light than to face the pain of the real world.

For a long time I floated around in my own little world. How could I make friends with my classmates? How could I like the kids that called my brother a retard? I went deeper and deeper into that box. I stopped eating. I didn’t talk to anyone. I started failing my classes. The only thing that touched my heart was music. I had this focal point that I would always stare at so I didn’t start crying in that class. I was so lost. My mom was very concerned, she had the school counselor talk to me. She was a wonderful person who tried to help me make friends and talk about feelings.

My mom wasn’t in much better shape herself. Mother daughter outings with the extended family ended up with my mom sharing with the family how much she hated autism and all of the things that Matt did or didn’t do. The family just wanted relaxation and fun. They were uncomfortable that my mom was crying and needed their support. They stared at me all the time. When I was alone with family, they peppered me with questions about if my mom was ok and how was Matt. I didn’t feel like anyone cared about me. Most of the time they were just trying to help without being very helpful.

One day Matt started talking again. He told stories of how his teacher in the grade school was abusive towards him. She shoved him under her desk and sat down at her desk squeezing him in there. He also said that the teacher would place him face down on the floor and sit on him making it hard to breathe. My mom asked me if this could be true, she was very upset.

After everything that happened, my mom tried to keep my younger brothers sheltered from going to school with Matt. She sent my brothers to parochial schools and schools that were out of our district. I wonder if that had anything to do with me not responding well to being in school with Matt. Did I save my younger brothers some pain? I hope so.

My brother’s wedding

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I feel like I travelled around the whole world in one week. Technically, I could say that I went from the southern end of our country to the far northern end this week. I am exhausted and feel a cold coming on. 

When I said that I live in rural WI, my brother Mark lives in extreme remote rural WI. An area so remote that sometimes no service appeared on our cell phones, gas stations were at times hard to come by, and the largest of towns consisted of a bar, a church, and 2 houses. A majority of people at the wedding never thought that Mark would marry. He lived as a hermit in this remote area for a long time. But just like the seasons change, sometimes our lives takes us on unexpected paths. 

Yesterday was a perfect day for a wedding. It went without a hitch, figuratively anyway. It was an unseasonably warm day. The leaves were starting to change color. My daughter sang a solo for the wedding. My son was an usher. Mark and Carla did not have any attendants. They just got engaged 4 months ago. Mark took Carla out on the lake, pulled out a ring, and dropped it in the water seemingly accidental. He made it seem like the plan was foiled, then pulled out the real ring. They had a small wedding. Carla bought her wedding dress from Goodwill for $25. It was beautiful. I am glad she is tight with money because Mark sure is. 

The reception was at a saloon. They had a bonfire and their DJ also served as their photographer. I have never seen my brother so happy, or dressed up for that matter. We had a great time and are very happy for them. This morning they drove off in their Jaguar for their honeymoon. I am excited to see what the future holds for them.  

Scabies and other things that bug me

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My autistic brother Matt has been in a group home for about 5 years now. Begrudgingly, my mother decided that it was better for her to choose a home of her liking versus having us do it after she is gone. It was something that my parents put off doing until Matt was in his mid 30’s and they were their 60’s. It wasn’t an easy adjustment, but it was mainly good. Well, except for the scabies. That’s right, one of the care providers brought scabies to the house. This ended up resulting in my brother getting scabies which he needed 3 pesticide treatments for. He had a major allergic reaction to the treatments which caused his hands to blister, peel, bleed, ooze in a red angry rash. My brother went around looking like he had a flesh eating virus for the past 6 months. The care provider refused to seek treatment and kept spreading it to this group of people again and again until they were forced to let her go. My brother is starting to finally get better. It was something so disgustingly horrible that I find hard to describe without pictures. You wouldn’t want to see them anyway. 

In response to all of this, my mother did some extreme allergy testing. This resulted in some extreme responses while we were up north this last weekend. First of all, the sun revolves around Matt. Remember me saying that last time up north when it was very hot Matt was angry because he couldn’t sleep? He wanted all of the fans off so my mom turned them off. So what? Who cares if he is angry? What, is he going to hurt our children like he hurt us? About the diet, my mom was going to wash off the grill after we made hamburgers just in case there was something in the seasoning that Matt was allergic too. That is too extreme. When he comes to my house he brings his own hand towel because he may be allergic to my detergent. That is too extreme. He also brings his own soap. That is too extreme. Matt is allergic to one kind of sugar and not another, but the canned food label only says sugar. Perhaps we should call the company and ask what kind of sugar they use. That is too extreme. He can no longer have baked beans because he is allergic to the pork now. 

Mark and Carla decided to have a pig roast for their wedding in 2 weeks. Matt now can’t eat what they are serving. My parents asked if they could stay at  Carla’s house for the wedding because of the special diet and linens that needed to be used for Matt.  Carla said that she didn’t have anywhere else to get ready, to put on her dress. Emily passed on a word of advice to Carla that apparently I gave her, to set boundaries. Emily said that my mom asked her to ask what kind of butter was in the mashed potatoes on her wedding day. Emily is right, the bride has too many other things she has to worry about. Mom asked Mark if Matt would be the best man at the wedding. Mark just said that in passing a couple weeks ago because he hates being the center of attention. Tensions are high, no one is ready. 

Recently, my brother Luke and I have been discussing taking our families on vacation this winter. I told Luke that mom might want to bring Matt along. He said absolutely not. I agree. I’m sorry, I can’t live like this anymore. If we decide this week to fly down to Florida, either my brother or I will have to be the bad guy. We love our mother and Matt, but this extreme favoritism just brings resentment from the rest of us. We have our own problems with our own kids. I don’t think that scrubbing down the grill is going to make a difference. I know mom needs to feel like she has some control. 

I am sorry, I feel very angry today. I realize that parenting a forever child is difficult for the parents, but guess what? It is hard for the siblings as well. We spent our whole lives dealing with all of this crap. Just because you are martyrs doesn’t mean that we don’t struggle. I’m sorry to be so edgy, some bad things happened today that I can’t talk about now. I will probably be able to talk more about it tomorrow. 

Up north, part 5

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Well this is it. Summer is unofficially over tonight. The deceptively warm weather this past week and weekend tricked my mind into believing that it was just beginning as we took out the dock and shut the cabin down for the season. But the leaves are changing color ever so slightly like the season of my life that I am entering now. Cooler temps will enter the scene tomorrow as if Mother Nature did get the memo after all. Saying good bye to summer is like losing a best friend which incidentally happened this summer as well. 

Since we last spoke, my husband came back from his week long sailing trip. Then guess what we did on Saturday? That’s right, I had him take me sailing to a beach that we haven’t been to all summer. There were lots of boats littering the beach, but ours was the only sailboat. This always attracts attention. Three bikini clad women just had to take a tour. Paul helped the ladies on board telling them that they could grab ahold of anything they needed for support. I was thinking, not everything ladies, not everything. But it didn’t come down to that. Lol. We came back as the sun was setting, eating sushi. Man, sometimes a sailor can make a woman feel so classy. Then we got home and I proceeded to fall asleep on the couch. Scratch that comment I made earlier about runners being up for anything on a Saturday night. Ah, maybe next weekend…

Then there was the matter of a slight domestic dispute between my teenagers on the way to church. And I thought things were going well when my son was ready to leave for church early. Almost made me proud until my daughter got into the shower 10 minutes before it was time to leave disrupting the natural ebb and flow of the morning tide. This resulted in a big fight of hurricane force that had me pulled over to the side of the road barricading myself from hair brushes and 4 letter words. My daughter screaming at my son for taking the first shower when he knows that she has long hair that needs time to dry. In a thundering crescendo, she pulled my son’s short hair. The waves of emotion growing higher threatened destruction. He grabbed her hairbrush, broke it in half, and flung it at her hitting her in the mouth. She’s crying, splattering large tears, saying that he broke her tooth. Just a slight bloody lip inflicted from the roaring wind of her tempest mouth. We live close to the church so we had to hurry up and put on our happy family forced summer sunshine all kitties and puppies smile. Nice how are you’s answered with a seething angry happy good everything is fine plastic fake smile. 

It was then that I thought for that brief moment that my mother-in-law was right. The previous weekend she dropped off my son after spending the weekend there and told me that my kids were brats and he was not welcome at her house ever again. She locked him at her house without Internet and friends, more than I ever get. I got the biggest hug and I love you mom after that. Wonderful. Then my mother-in-law proceeded in telling me that her best friend’s grandchildren were perfect, not like my bratty kids. I said, “Well how nice for her”. I would be upset with my son, but this happens almost every time we see her so I just shrugged it off. Then she criticized what I was making for supper and got in a fight with her husband. I kept telling myself that she could have aborted her unwanted child, my husband. It is in these moments that I remember that if my husband had an easy childhood, I probably wouldn’t appreciate how far he has come as a husband and father without having a father himself. Or how hard he has worked starting a business and getting a Master’s degree when his only parent dropped out of high school. We can all have a better life beyond the limitations of childhood. 

Oh life, someday I’ll laugh over all of this. 

Bracing myself

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I received a fortune cookie this week. It read, “our duty, as men and women, is to proceed as if limits to our ability did not exist.” Sometimes I feel like I have the opposite problem. I have the mind set of an iron pumping 17 year old male trapped in the body of an iron popping 41 year old woman with a sore knee. I am not the only one of my siblings to have knee problems either. My brother Mark blew out his knees and pretty much the rest of his body years ago from intense physical labor. My youngest brother already had 2 knee surgeries from being a hard core competitive volleyball player. We have been known to beat the crap out of our bodies, I wonder why I thought I could be the exception. My daughter said I may have to quit running and take up knitting. God forbid!

I bought myself a knee brace this week and ran with it yesterday for a 6 mile run. I wrapped it around my knee tight as a tourniquet. About half way through, I did feel a twinge of knee pain. What I did notice, however, was that I had a lot less pain after the run. I can imagine myself running in the future with a full body brace. I am bracing myself for that. Lol. Did I tell you that I also have a carpal tunnel brace? I need to wear it if I spend too many hours at the office or if I have a jigsaw puzzle marathon. C’mon, you live through decades of Wisconsin winters and tell me what you end up resorting to. Then my sanity level should not “puzzle” you. Just another thing I will have to brace myself for, a long winter. I am going to tell myself that it is summer as long as I can. 

I did see something interesting on the road yesterday. It was a young man walking covered head to toe in camouflage. He even carried a large camo bag. What wasn’t covered in camo was covered in tattoos. He had long dishwater blonde hair with a bit of a beard growing. He meant me no harm on his long journey. I imagined that he was discharged from the military in Texas and decided to take the long way home. It is strange how we can meet up with strangers that converge for a very brief moment on our path. Here he is in my blog, unaware. Maybe for a second I was strange to him too, bracing myself for the path I chose to tread upon. 

Family dynamics of autism

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Growing up, we all had our roles. Even dysfunctional families find ways to function. As mentioned previously, my parents relationship was rocky before having 4 kids in 5 years. I would even go as far to say that my dad probably is within the Asperger’s spectrum himself. Now throw in the violently autistic child and a wife who was trying desperately to juggle flaming torches. 

As oldest, my main task was fixing. I also held the role of caregiver, decision maker, best friend, advisor, and emotional support. I aligned myself with my mother. It was my task to keep the flaming torches in the air. If there was a problem, it was my task to fix it. I was loyal to whatever cause was important to my mother. As an adult, it has been difficult for me to listen and empathize when everything within me tells me to fix. I had to suppress all feelings in order to use my head to fix. It worked a little like email. I kept deleting my feelings until finally my deleted items were full. Then anger, depression, and anxiety flowed forth like spring’s river. My email is working now, but my husband and I both lack empathy in order to survive childhood. I need reminding to listen and not fix all the time. It has been a bit of a marriage struggle, but as a team people have been hard pressed to take advantage of us by pulling on our heart strings or pull the wool over our eyes. So it is not all bad. 

Mark’s task was physically working hard and advocate for my dad. He aligned himself with my dad. If my mom packed up the car with all of her stuff and was heading down the driveway, it was Mark’s task to stop her. He would tell my mom that it was not my dad’s fault, that he was just not good at relationships. He also earned my dad’s love by working hard even though my dad was lazy. For example, my dad will take the lawnmower to the end of the driveway to get the mail (sometimes in his underwear, of course). Or that one time we got a couple of inches of snow, he was too lazy to clean off his windshield and ended up in the ditch instead. 

Mark worked so hard that he blew out his back as a teen. I have never seen anyone work as hard as he does. When I told him that I was running a marathon, he said he could outrun me. I think that I threatened his role as the family brawn. When Mark wasn’t working, he preferred to be invisible. Mark and Carla decided they are going to have a small wedding with no one standing up. Mark said that he was tempted to have our autistic brother Matt be his best man because Matt’s behavior is so bizarre that no one would notice Mark. That was very profound. 

Luke, the youngest, had the role of instigator, comforter, caregiver, and clown. He was a mama’s boy and my dad hated him for it. His main job was to make sure that Matt did not get all of the attention. He was the one who cut the wires on my dad’s electronics and kicked a hole in the wall. When he got older, he was the one who played strip volleyball with his friends in the front yard. Girls running around topless in the front yard.  He also wrestled with my dad in the front yard over car keys which resulted in an overnight stay in the ER for my dad with heart palpitations. After awhile my parents gave up, he started driving at 14. He was also the scapegoat and received the brunt of my dad’s anger, deserved or not. 

Somehow we all managed to function. We are survivors. We made it through with our sanity intact, held by a thread.  We are strong, but not without a few battle wounds. 

Real life Tetris 

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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?