Autism

A blue Christmas…

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Last night I decorated my new real blue Christmas tree…alone.

I felt such a loss after Angel left to go back to college. Year after year, we decorated the Christmas tree together. I really missed having her here this year. I didn’t tell her that though. There are so many kids dropping out to be closer to home. We both know she is right where she needs to be.

My other two children were not interested in decorating the tree with me. Just this last weekend Arabella said that she didn’t think her teenage self would like me very much. Bayley was over and Alex wanted to spend time with her. The last thing I wanted was to force the kids to spend time with me. I want them to want to.

I wanted for just a second to put them into my world growing up. I wanted them to realize how important this tradition is to me. But I protect them from all of that.

The holidays sometimes does crazy things to my head. 

The next thing I know, I am back home. Mom and I are baking cookies for Santa. There is a tree with glimmering lights. There were Cabbage Patch dolls hidden in wrapping paper under the tree. 

Then just like that, everything I had was gone.

Mom said that Matt couldn’t tolerate Christmas trees, real or fake. Everything stopped. We no longer had Christmas trees in the house. We no longer put out cookies for Santa. We no longer decorated with lights or candles. That was no longer allowed. What used to be magical and fun turned cold and desolate. It became a season of despair for me. 

Thankfully, my grandma always had us over on Christmas Day. I never cared that her trees were less than perfect. She always cut her own tree from her backyard. I was happy there. Except for the year that my mom told her that she could no longer have a tree because Matt was allergic. My grandma decorated the wall with bows that year. I was so angry.

Last night I put my head in my hands and cried. A part of me will forever be broken.

I wanted my kids to understand what having a tree means to me because I never had it. I did have it at one time, but it was taken away. I wonder if my younger brothers even remember a time when we had a Christmas tree in the house. Perhaps I will ask them. Maybe it is better if they don’t remember.

Last night I felt so much anger and despair. If my mom were to call, I wouldn’t answer the phone. It is not fair to her to be angry about something that happened 30 years ago. It’s not her fault that Matt is autistic. The whole situation was unfair to all involved.

I want to help other special needs families learn from my experiences, but I feel so much rage. It hurts to reach out. My mind goes absolutely haywire this time of year with anger, depression, and anxiety. I can’t seem to control it. I can’t seem to escape the memories. So many years have past now, but it still hurts when I pick at the scars.

Why did you take everything away from me? Did you think that taking our Christmas traditions away from us would make Matt any less autistic? It was not like he broke out in hives and had trouble breathing. I needed this to help get through the dark days. I needed some light. But my needs got ignored. The funny thing is, Matt wasn’t any more or less violent without the tree. It didn’t matter either way to him, but it did to the rest of us

I’m sorry, I didn’t intend for my post to be this way. I was going to post a picture of my lovely blue tree. This post was going to be light and fluffy like the snow we don’t have on the ground outside. I didn’t think that I would respond this way. This time I didn’t brush the feelings away. I let myself grieve. Sometimes I wish my kids would understand that the things they take for granted as normal were never normal for me. 

I am not usually an emotional person. I am usually cool, calm, and detached from feelings. I don’t want to live in that cold emotionless void anymore. I want to feel now even if it hurts. I am stronger now, strong enough to handle this.

Thanks for listening to me. It really helps me feel better. 

Post party impression

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Did everyone survive Thanksgiving? I made it through…

All of the hours spent cleaning, cooking, and doing dishes…then…BOOM….the whole shebang is over just like that. I feel so wiped out. Maybe it’s just the tryptophan from the turkey..

The holiday went well. We didn’t discuss politics, although oddly enough, it is something we all agree upon. 

Practically everyone who came over had special diets. My daughter Angel is a vegetarian now. She called me a couple of days ago from college saying that she needed to go to the dentist while she was home. She said that her gums were streaked, painful, and bleeding. The college nurse said that she needed a new toothbrush. Being the worry wart mom I am, I figured out she had a B12 deficiency from being a vegetarian. 

After she started taking B12, her symptoms went away. My dad saw her take the B12 and asked her if she was taking birth control pills. Some things never change. Not funny, dad, not funny…

My son Alex doesn’t eat vegetables. Nothing green ever touches his lips. 

My mom has new allergies. She can’t have black pepper, parsley, or cinnamon. Do you think I am kidding? I did make a special cinnamon free cherry pie for her, but I heard it wasn’t as good as the one with cinnamon. 

My autistic brother Matt is gluten and dairy free. He also has allergies to all foods that start with the letters B and S or so it seems. The list changes rather often, so I never know what to do and feel stupid for asking.

Alex brought his girlfriend Bayley over for Thanksgiving for the first time. I wondered if Alex warned her about my family. Did he tell her of grandpa’s crude jokes? Or Matt’s propensity to fart and belch loudly while at the table? This time it seemed like Matt ate beans for a week straight before his visit. Then he urinated on the bathroom floor. All of this is completely normal, but rather uncomfortable for a first time visitor.

I was thankful that my mom brought food and helped me dry dishes. She did drive me a little batty when she talked about how my brother Luke is so much healthier than me. Did you know that Luke stopped eating out of Teflon pans? He is practically a vegan now. When he does eat meat, it is never red and is always cage free. He only eats whole foods that are organic. He has the cholesterol level of a 14 year old. Maybe if I was more like Luke, I wouldn’t need to take Prilosec twice a day because that causes kidney damage. How would I like dialysis? I wouldn’t need dialysis someday if I am more like Luke. My gosh, what if I was a couch potato chip eating smoker? 

Maybe I should just give Luke all of my medals…

Did you know that running is bad for me as well?? My mom said that my varicose veins will get worse. It is just not healthy. My mother-in-law also said that running was bad. Just look what happened to her brother. The running killed him. He ran 5 miles every day and smoked 2 packs of cigarettes. Must have been the running!

Ahh, I try to be as healthy as I can be and let the rest go. I hate to say it, but none of us will get out of here alive. In my lifetime, I have seen healthy people get cancer and unhealthy people live a long life in good health. I am not going to make myself completely miserable by worrying about the damn Teflon. People already give me crap about running marathons. My neighbor even said that running wasn’t healthy as I ran by his house one day. He hollered out to me while he was outside smoking a cigarette. 

I just don’t get it! How can people think running is unhealthy??  

Let the holiday season begin!  

22. Where do you see yourself in 5 years? 10 years? 15 years?

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Day 22: Where do you see yourself in 5 years? 10 years? 15 years?

This is a really difficult question for me right now… I see myself approaching a major fork in the road.. I don’t know where it will take me or what I will decide because there are too many unknowns right now..

I have been thinking more and more about going back to school to get my Master’s degree and then writing. I may have the opportunity to make this dream come true. If things don’t work out, I will simply keep on doing what I am doing….Nothing changes.

In 5 years…. I will be sending my last child off to college. I will have my Master’s degree and have finished my first book about growing up with an autistic sibling. I am almost done with my second book which I will write about my husband. It will be an American success story about a boy growing up in poverty, working hard, and succeeding in business. I also will complete my first Half Iron in this time frame. 

In 10 years….. I will be traveling the world with my husband taking pictures and writing about our adventures. I will be very active on my trips from all the endurance I gained from years of exercise. We will be free from anything that ties us down….Work…Debt….Pets…Our kids will be out of college and settling into their own lives. 

In 15 years…. My years of adventure and excitement are behind me now. I will be ready to settle down with a house full of cats. I will spend a lot of time in a rocking chair telling my grandchildren the story of my adventures. 

It is hard to guess what I will be doing next month, but I can see this being a plausible way of spending my next 15 years…

20. Three significant childhood memories

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Day 20: Describe 3 significant memories from your childhood

1. My first childhood memory that I can remember happened when I was about 4 years old. This was right around the time that my parents noticed that there was something wrong with Matt. Matt stopped talking. He threw wild temper tantrums during the day. He screamed from night terrors at night. Friends of my parents said that they needed to have stronger discipline. They were told it was their fault that something wasn’t right. What they needed to do was beat the autism out of Matt.

That is what happened that day. My dad was in the kitchen with Matt trying to beat the autism out of him. My mom held my younger brother Mark and I back in another room to keep us away. I was afraid but I looked anyway. What I remember most was the haunting screams of adult and child. Matt kicking and flailing with my dad standing over him. The constant ping, ping, ping and rattle of the cupboard doors being hit during the scuffle.

2. The 2nd most significant memory happened when I was 6. It was a warm day in May when my mom left me alone on the lake dock to watch my 3 younger brothers play in the water. I was not to get my clothes wet. I was supposed to call out if there was a problem. Matt was flapping his hands together near the shore, oblivious to everyone else. Mark and Luke kept wading into the water deeper and deeper.

Mark exclaimed excitedly in his shrill little boy voice that Luke was swimming. But Luke was not swimming, he was drowning. Little Luke that just turned 2 was drowning in the lake and there was nothing that I could do. I tried to scream, but I couldn’t hear my voice. I wanted to jump in but wasn’t supposed to get wet. I didn’t know what to do, so I didn’t do anything. I froze with one leg perched over the water. My mom came out to check on us and saved Luke. It took me a long time to forgive myself for doing nothing, but I was only 6.

3. The 3rd significant memory happened when I was around 12. It was the day the fish tank broke. Luke came running through the front door that we never use and the door handle went right through the fish tank. The tank cracked spilling water onto the floor that seeped down into the basement where my dad was working. This made my dad angry. I was afraid of touching the fish, but I had to try to save them. I reached into the broken tank to grab a fish. It was squirmy and slimy. I screamed and pulled out my arm cutting it on the jagged glass. As the blood ran down my arm, my dad grabbed me by the other arm, swore at me, opened the door, and pushed me out of the house.

10. My most embarrassing moment

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Day 10: Describe your most embarrassing moment

Back when I was in college, I took a class called Deviant Behavior. One of our assignments was to do something embarrassing, or simply not socially acceptable, in public to see how other people would respond.

While some students did embarrassing things like farting in public or picking their noses, I kind of cheated on this one… I went back to my repertoire of embarrassing moments in my life.

Maybe it was the time that my 350 lb dad decided to mow the lawn up north in nothing but a Speedo. His stomach hung over his underwear so that from the front it looked like he was mowing in the nude. What can I say? It was hot out that day. We gasped in disbelief as the neighbors tried not to stare.

Having my dad walk around in his underwear was nothing new. He used to do that when I had friends over and sometimes he does that when we visit today. He has no problem walking to the end of the driveway to get the mail in his underwear. Let me correct that statement…He does have problems walking to the end of the driveway, so he starts up his lawnmower and rides it to his mailbox in his underwear. He answers the door in his underwear if someone comes a knocking. He pees with the bathroom door open. He will dress up in pajama bottoms to go out to eat, but he only showers once a month. He wipes his teeth on the bathroom hand towel, but doesn’t brush them…There are some things that I am too embarrassed to even tell you about..

Or maybe it was all of the times that Aunt Grace, who had enough money to treat everyone to the meal, would shove everything from the table into her big purse or leftovers container. She would take the little butter dishes, silverware, cloth napkins, centerpieces, creamers, or practically anything they didn’t clear off of the table. She used to grab matches back in the day, but didn’t smoke or a handful of mints on her way out the door. She always insisted these items were hers since she paid for the meal. Or maybe it was her fondness of slapping the butts of my friends that she liked.

Or maybe it was all of the times that I saw my autistic brother expose himself to friends and neighbors. He used to stand at the end of the driveway at my grandma’s house and pull down his pants every time a car drove by. He walked around the house in stained underwear whether people were over or not. Sometimes he wore my mother’s dresses. He would stand out at the end of the dock up north with his pants dropped and pee into the water. Then he would stand there shaking it for awhile as the boaters going by would stare or laugh. Or maybe it was when he would fart, attack people, or swear in public. Hard to say..

Or maybe it was just simply bringing a friend or potential boyfriend back home to a house where there was always dirty dishes with rotten food on the counter and pee on the bathroom floor. I brought them home to a hoarder’s paradise where things don’t get thrown away. Funny thing is…I always preferred the clean freaks…Ha ha ha ha…Sometimes unwanted items would be given away to my brothers or I, but usually it just meant that it was time to build another shed.

Let’s just say that I don’t get embarrassed much by anything anymore…

But as for the most embarrassing thing that I ever did…Back when I was in 2nd grade, I peed my pants in front of the whole class. I couldn’t get the teacher’s attention and couldn’t hold it anymore. Urine leaked down my green tights and puddled into my shoes. I had to walk around all day in a short little dress with nothing underneath..

Now you can probably understand why I skipped the assignment of doing something embarrassing in public…been there, done that, and don’t want to do it anymore..The hardest part was narrowing down my topic of embarrassment.

7. What is your dream job?

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7. What is your dream job, and why?

When I was younger, quite a bit younger, I wanted to be a counselor. I earned a Bachelor’s degree with a counseling emphasis. I had every expectation to get my Master’s degree and become a licensed counselor, but didn’t.

To tell you the truth, I wanted to fix broken people. I wanted to change them. I wanted to take their weaknesses and make them strengths. I wanted to make flowers grow in a patch of weeds.

I never told you this before, when I was younger my mom would pair me up with younger girls that also had difficult sibling situations. Sometimes I would visit for a few hours or a weekend. I think that the purpose was to counsel and console them like I did with my mom. There was no doubt I would be a counselor.

Then my last year of college happened. We had a professor that was a counselor. She made me doubt my career ambitions. She took away my unrealistic expectations and told us what it really was like being a counselor.  She told us how her holidays were interrupted because she had a take calls from suicidal clients. She told us of the times she lost clients to suicide and spoke of how difficult it was to handle. I questioned my ability to change people. I mean, I couldn’t even change myself or my loved ones who were struggling.

Really, who did I think I was? God?? To think that I could save people?

I thought about going back to school to be a counselor off and on over the last couple of decades, but no longer have the interest to do so. I don’t think I could listen to people talk about their problems and not do anything to fix them. I really lack compassion for those who are unwilling to change and just want someone to complain to. I think it would be incredibly hard to watch someone spiral down into mental illness and not be able to pull them back out. I would take every suicide personally as a failure on my part.

I also dreamed of being a librarian..surrounded by books in quiet serenity…organizing books..

I dreamed of being a lead singer in a band…exciting weekends being a star.

I even dreamed of working alone in a lab analyzing samples…checking for little details that might be off…water samples…pap smears…biopsies…DNA testing…being away from people using my analytical skills.

But right now, more than anything, my dream job is to be a writer.. I have been considering leaving my job of nine years and going back to get my Master’s degree in writing…The first thing that I would do is write my story…growing up with an autistic sibling… I would make it my life work… I would tell my mom…receive her blessing…get all of her journals that she used to write in to compile with mine… then write…offer hope to (without trying to fix)  people who are struggling…it has been something I have always felt compelled to do… then I would be free from it and spend the rest of my life being a freelance travel writer…travel the world off the beaten path…take many pictures and write…

That would be my dream job..

 

6. The hardest thing I ever experienced

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6. What is the hardest thing you have ever experienced?

My childhood was the hardest thing I ever experienced..

Outwardly, people thought that I had it all. I was voted most likely to be a supermodel by my senior class. We lived in one of the biggest houses in town. People expected me to be happy and perfect all of the time.

But inside our house there was always a fresh stream of piss on the bathroom floor. Dirty dishes covered the kitchen counter. Rotten food festered in the fridge. There were many rooms dedicated to the clutter shrine. Stack after stack of newspapers, magazines, and papers adorned the floor. Broken items and unworn clothing littered the forever unfinished bathroom upstairs. Every surface area was cluttered. But it didn’t matter because no one bothered to visit anyway.

Maybe it would’ve been different if I didn’t have an autistic brother or if my parents didn’t have 4 children within 5 years.

Several friends of my parents told them to beat the autism out of him. Believe me, my dad tried. Not surprisingly, it didn’t work.

Maybe things wouldn’t have been as chaotic if Matt wasn’t autistic. Matt sometimes was violent. Pulled hair..bloody lips..black eyes..bruised arms and legs..a head bashed into a nose..poked eyes…Violence often infiltrated our house. I was told not to retaliate or feel anger because Matt didn’t mean it. Didn’t I know that I was the lucky one?

Sometimes we would get excited about going somewhere, just to get there, and have to turn back home again. Matt wasn’t welcome there anymore..

Then there were all of the rules that didn’t make any sense. For example, I wasn’t allowed to wear hair spray, nail polish, or perfume. I had to sneak a bottle of hair spray into my backpack and get ready at school. That was when we were still able to go to school. Matt’s behavior was so intolerable that he was no longer allowed in school so I didn’t go to school either for 3 years.

I lost a lot of friends after Matt hurt them…

My parents argued constantly. My dad lashed out verbally and sometimes physically as well. Half of the household at one time or another was severely depressed. Nooses hung from empty trees. I was fearful of what I might find when I entered a quiet house.

My mom cried out to God at night asking Him why He was punishing her…

My childhood was a time of chaos, disorder, dysfunction, and despair…

4. Ten things to tell your 16 year old self

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Day 4: List 10 things you would tell your 16 year old self, if you could

  1. Spend as much time as you can with your grandparents. I hate to tell you this, but friends come and go. Your best friends now won’t even be at your wedding. Soon something is going to happen that will push the friends you have now away. Enjoy the times with friends in the moment. Remember that your grandparents won’t be around forever. They are the greatest source of stability in your life, not your friends.You will never regret spending a lot of time with them.
  2. Your strong work ethic will get you very far in life. However, don’t put work or your long to-do list above your relationships. Take the night off of work to go to your brother’s high school graduation. The $30 you earned that night will never make up for the regret you will feel for the rest of your life for not being at your brother’s only graduation.
  3. I know that you are dealing with some pretty hard things to handle and you feel like you are all alone. These are the hardest years that you will ever face in your life. Hang in there, soon it will be smooth sailing.
  4. Don’t think that you have to be perfect, or even good, at something before you are willing to try it. You don’t have to be good at something to like it either. You don’t have to be perfect. Quit being so hard on yourself. It was a big lie when you were told you had to be perfect. Put yourself out on a limb. Try something new even if you are not good at it.Who cares if you fail?
  5. Leave home when you turn 18 and do WHATEVER it takes to not go back. In fact, move far away. Do not take responsibility for your parents problems. Do NOT agree to be your brother’s caregiver. You should not be giving your brother a shower on a Saturday night. You should be out living your life doing the things that young people do. For once in your life, be carefree. You will already regret not having a childhood, don’t regret not living while you’re young too. Soon enough you will be tied down by your own responsibilities.
  6. Don’t be a caregiver for your brother or anyone else for that matter. Be a little more selfish. Do the things you want to do. Allow yourself to be stupid and make mistakes that you can learn from. Hold out for the library job you will be offered instead of turning it down to be a caregiver. You did enough care giving as a child. This will not be good for you.
  7. Buy an expensive pair of running shoes and start running. Trust me. You need a healthy way to relieve your stress. It is a lot cheaper than therapy and all those bottles of pills that never helped you anyway. Soon you will enter adulthood with enough baggage to travel the whole world. Once you realize their weight, you will have a lifelong struggle with depression, anxiety, worry, and anger. Running will help you get through all the years of repressing your feelings that you couldn’t handle.
  8. Keep writing down everything you experience and don’t stop. It is worth making time for. Some day it will make for a helluva story.
  9. You have to forgive the people that have hurt you for your sake. Pity their weakness. Eventually you will no longer be able to outrun all of the things that you are hiding from. It is going to take a long time to face your demons. You will spend a lot of time reflecting. But eventually you will have to let go..forgive..and trust that God has a bigger plan or purpose for your life. Be a beacon of hope for those that struggle around you.
  10. Try not to worry so much. It annoys me and the others around me. I don’t like it. I want you to relax. Please start working on that now so we can get over this someday.

Pondering purpose and moving mountains

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Do you know what your purpose is in life? How hard would it be to move mountains?

These are my deep thoughts as I sit on the hotel balcony enjoying the lovely view in California.

I started pondering my purpose on the plane ride over. I am an anxious flyer, but I knew I was safe because I was with Paul. Not that he necessarily makes me feel safe, but because I know that God has a greater plan for his life.

But why don’t I feel like that about myself?? That there isn’t a great plan for me? 

What if the purpose of my life is to bear a child that would bear a child that would make a huge positive impact on the world? What if that is my sole purpose? Would I be okay with that? 

What if I was meant to support someone else that would make a difference in the world but never have a huge positive impact myself?

Do all lives have meaning?? What about the quadriplegic? Someone who is declining into dementia?? What about someone with autism? There are some who would say that they are not a valuable member of society if they are not a productive member of society.

But I don’t think that that is true. Carrying for a disabled family member, although burdensome at times, has positively impacted my life. Let me repeat that. Someone deemed by society as not having purpose has changed my life. 

While I sit at the conference, I listen to the keynote speaker talk about leadership and being a positive change in the world. There are a few people here that I think will do it. Then I walk down the hotel corridor and a cleaning lady smiles at me. Maybe changing the world doesn’t always mean moving mountains. Maybe it’s just a smile or kind word when someone needs it. Helping others..

Even though I am middle aged, sometimes I still ponder the purpose of my life. Am I doing what I am supposed to do? Am I on the right path? Does my life line follow the right projectory for positive growth?

There are a few people, like Paul, that are capable of moving mountains…that seem to have a special purpose. Then there are others, like me, still trying to figure things out.

Do you know your purpose in life? Does it change over time? Or are you still trying to figure things out?

Back to my “normal” routine

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With the exception of the bride and groom, the wedding went without a hitch!

The groom in last weekend’s wedding is the only child of my Aunt Jan. For the wedding, Aunt Jan walked down the aisle followed by her husband and ex-husband who walked in together. We all loved Aunt Jan’s ex-husband Rob. That is, until he started his second family while he was married to her. This happened many years ago. Now Aunt Jan is married to a wonderful guy.

When Rob was my uncle, he always made us laugh. He teased me about boyfriends. I remember him saying that he sang the song Elvira in the shower. Why I remember he made that general comment back in the 1980’s is beyond me. Why do we remember what we remember?? My memories are very strongly tied to music. 

My brother Luke and I couldn’t wait to talk to “Uncle Rob”. This was the first time that we saw him since the divorce when we were young kids. He seemed kind of sad to me. Other than that, I spent a lot of time talking to my relatives that I only see for weddings and funerals. We might not even get together for Christmas anymore.

Last night I was much too tired to write. I didn’t sleep well while I was gone. The first night, Angel and I tossed and turned all night. The second night, the alarm clock went off at midnight in our hotel room. The third night, the smoke detector went off. When we were at the waterpark, our hotel room was located along the main walkway between indoor parks and restaurants. It was so loud that I turned the fan on high for some white noise. The A/C didn’t work with the fan. Our room was hot and humid enough to set off the humidity sensor on the smoke alarm.

Plus I woke up in the middle of a dream, a nightmare in fact. I was dreaming about opening a box of high school memories and it was full of notebooks and writings. Then I opened a box of Matt’s high school memories and it was full of knives. My friends I lost were watching me open Matt’s box and it was just as unnerving as the alarm. Do I have nightmares often without knowing?? The last night at the hotel two thunderstorms rolled through in the middle of the night. Then I dreamed my son overdosed on drugs and died. 

What miserable sleep! With over 10 hours of driving, three different hotel rooms, and two nightmares I felt pretty crappy.

Last night I took Matt back to his group home. He attended the wedding with my parents. My dad dropped my mom off to go on vacation with a friend of hers. I felt very emotional and down about dropping Matt off. Afterwards, I asked my dad if Matt would be able to come home over the next couple of weeks while my mom is gone. My dad said that he didn’t know how to take care of Matt. I think that was what was bothering me. I don’t know how to take care of Matt either.

When Matt is at home, my mom won’t let anyone take care of him. She crushes his pills with a mortar and pestle. He takes different medications, elixirs, and vitamins throughout the day. It used to be hard enough when Matt couldn’t have dairy and gluten. But now he is allergic to many more things like potatoes, cinnamon, beet sugar, and black pepper. My mom scours labels for hours searching for the type of sugar on ingredient lists. If anyone cooks an offending food on the same grill without proper cleaning, puts the finished food on the same plate as an offending food, or gets the diet mixed up then my mom gets upset. It has been this way for years, just not quite so extreme. I would have a hard time figuring it out if I was a dietician. We can’t be like my mom and that alienates us from him. 

I am safely back home now, got some rest, and am back to my normal routine.