Autism’s sibling, journal 1

I love you Alissa. I am thankful the Lord has given you to me. You are a beautiful child. 

With Love, Your Mom XO

1/1/85

Had to clean my room before I ate. I ate at 8:07 PM.

6/19

I hate everything and everybody. Matt takes a knife and tries to poke mom’s eyes out. Mom blames me.

7/15/86

I hate mom. She only cares about the stupid Matt.

8/4

Matt tries to hurt our aunt. He is reacting to something he is allergic to. Luke pushed me into my aunt and uncle’s swimming pool with my clothes on. I had to ride home wrapped in a blanket.

8/19

Today Matt bit me. My arm will turn black and blue tomorrow. Mark stuffed a pepper up his nose. He cried and cried.

9/12

Mark got beat up by someone the day of his birthday party.

Travel woes, just trying to get there

You may or may not have noticed that I took a week off from my travel series. I took time off from writing about traveling to actually travel. We decided to take one last family vacation to Florida before my oldest child graduates this year. The trip down to Florida and what happened at the end of the trip was so horrible that I am still upset about it. I decided to vent about my woes with you today and then write about the trip (which went great) in another post.  

Last week my mom, husband, 3 kids, and I flew out of Milwaukee with Delta to meet up with my brother Luke and his family in Orlando. We were not able to get a direct flight to Orlando and had an hour layover in Detroit. Our flight ended up being delayed in Milwaukee because someone over fueled the plane which caused us to exceed our weight limit. Eleven people needed to give up their seats due to this. They also had to get a large hose to remove some of the fuel. When we were finally able to board they still needed to de-ice the plane which took a long time because they ran out of de-icer. It took an hour before we were finally able to leave. At this point, the flight attendant assured us that if we had a connecting flight they were aware of our situation and would most likely wait for us.

We ended up landing a few minutes before our next flight was scheduled to depart. We ran across the airport as fast as we could and got to our gate two minutes after our flight was supposed to leave. We arrived to the gate just as our plane was leaving. They could not wait for us for 2 minutes!! Then we were herded into a long line of passengers from our plane. At least 20 people that were sitting near us missed their connecting flights. After waiting in line for what seemed like forever, we were able to talk to an agent that barely spoke English. He said that the only way he would be able to get all six of us to Orlando together was if we took a connecting flight to Boston. At this point, I was extremely angry. He wanted to direct us into Boston right around the time that the east coast was supposed to be hit by a blizzard. I pictured my family being stuck in the weather that we were trying to escape from. You didn’t want to hear the words that seeped out of my lips.

He booked us on the flight to Boston which we cancelled. Then he tried to get us all on the earliest flight available closest to Orlando. He had a few seats available but by the time he tried to type all of our names in the seats were gone. The best he could do was get an 8 PM flight to Tampa for my mom and Paul. He was able to get the kids and I on an 8 PM flight to Jacksonville. I would arrive in Jacksonville at 11 PM then have to somehow find a rental car to drive 2 1/2 hours in the middle of the night with 3 kids on roads I’ve never driven on to get to the house that we rented. You would think that they would agree to pay for the extra rental car to get us there. Nope, they told us that the flight was delayed due to weather and that they would not cover that additional cost. The delay was NOT weather related.

We noticed a half an hour later that another flight was leaving for Orlando. We decided to run across the airport to try to be on stand by for that flight. When we got there, they made the announcement that they were overbooked and were looking for volunteers to take another flight. That wasn’t going to work. We saw another flight leaving for Tampa in 30 minutes all the way across the airport. So once again, Paul and I ran as fast as we could with 3 children and a senior citizen with all of our carry on bags across the airport. When we got there, the Tampa flight was boarding. They told us that we needed to talk to customer service to be added to the stand by list. We went where they directed us to go and no one was there. When we found where we needed to go, we had to wait in line for 10 minutes to speak to someone. When we explained our situation, the woman told us that she needed to leave for her lunch break and directed us to talk to someone on the phone. While Paul was speaking to someone on the phone, my daughter called me in a panic to say that the flight was about ready to leave. We missed the opportunity to catch that flight.

Then we went across the airport again to get on stand by for the next flight to Orlando at 5:30 PM. It was at this time that I switched the Orlando rental car that I booked over to Tampa. I made several other troubleshooting and problem solving calls. I was so angry that I wanted to take my carry on backpack and slam it into the garbage bins to knock them over. I don’t think that I ever swore so much in my entire life. I don’t know what it is about yanking around people’s schedules (while feeling a total lack of control) that can turn reasonably sane people into raging bulls, but it does.

I will be totally honest with you right now, I am terrified of flying. Every little bit of turbulence, I agonize that the plane is crashing. I usually pop a couple of anxiety pills and sleep most of the flight arriving in a comatose state. Paul usually has to make sure that I get to wherever I need to be safely. I read everything that I could about flying to try to get over my fear. I read that planes don’t crash due to turbulence. Most planes crash during take off or landing. Thanks, now that scares the hell out of me too. I am afraid of dying. The thought of falling terrifies me. I feel trapped with a total loss of control while flying. My life is in the hands of some pilot that I don’t even know. You say that flying is safer than driving? Well, that scares me too. I spent a good deal of my life struggling with driving anxiety. I told Paul that I didn’t think that I could handle flying and then driving 2 1/2 hours after being awake 20 hours. He did everything that he could to make sure that the kids and I were on that next flight to Orlando. At the very last second, the person at the desk was able to get the kids and I on the flight. I told Paul to make sure that if they couldn’t get my luggage on that they would send it to Tampa. I had to fly totally alert and unmedicated ridden with anxiety.

Once we landed, I got the message that Paul and my mom were able to get an earlier flight to Tampa. They said that my luggage was in Orlando. My youngest two kids were fighting and touching the luggage carousel. I was just about going crazy, but I was there. My luggage never came out and I panicked. It turns out that they set some of the luggage to the side. Then, due to miscommunication, my brother did not know that he had to pick us up at the airport. We sat at the airport another hour waiting for him. Finally we got to our rental house after 10 PM. My mom and Paul ended up getting there at 11:30 PM.

It was a rough start to our vacation. I am glad that we were able to get there the same day. All of the stress could have been avoided if some idiot did not over fuel our plane. I don’t think I would have been quite as angry if we didn’t watch our connecting flight leave two minutes after the scheduled departure time without us.  Running back and forth across the airport with 3 kids and my mom was extremely stressful as well. I am thinking about writing Delta a letter. Unfortunately, our arrival back home was just as horrible and that had nothing to do with Delta. I will tell you about that next, this post is long enough already.

 

The travel diaries, Omaha

The story of how we ended up in Omaha one year during Thanksgiving winds around a rocky path. Before Paul and I met, he was best friends with Dwayne. Dwayne was a man that looked like what you would picture Jesus to look like. He had rugged good looks with shoulder length brown hair that glowed a perfect shade of brownish red in the sun. He was a smart man who loved to discuss philosophy, theology, and psychology. He was fun loving, liked to joke and play cards. But Dwayne had one major personality flaw that inevitably led him down a path of destruction unaware. Dwayne would do anything for a dare.  One night while camping with friends someone dared him to dive off a dock near the campgrounds. Dwayne accepted the dare and dove into water that was only a couple of inches deep. Instead of costing him his life, it left him paralyzed from his neck down.

Before his accident, Dwayne had married his high school sweetheart too young. They had two children and divorced. When Dwayne had his accident, he was with Tammy. I met Dwayne a couple of years after the accident while he was with Tammy. Now Tammy was an evil person. But you know how it goes when your best friend dates someone you don’t like, you tolerate that person. Plus there was never a dull moment with Tammy around.

Tammy had some major character flaws herself. First, Tammy liked to steal things. Once when we went out to eat for Dwayne’s birthday, Tammy went around to every table and took the fake flower displays. She shoved a stack of fake roses into her purse. When it was time to leave, the manager told Tammy she needed to give the flowers back which caused her to make quite the scene. Nothing unusual for her. 

Second, Tammy liked to cheat. Tammy had two sons, one that she had with her ex husband and the other with Dwayne after the accident. Ok, there was absolutely no way that Dwayne could have fathered a child as a quadriplegic, but he was listed as the father on the birth certificate. One year at Christmas time the true story came out about her other son as well. Tammy and her ex were fighting on the phone while we were there. She told her ex that the boy that he thought was his for the past 10 years wasn’t his son, wished him a merry Christmas, and hung up on him. Tammy was just being Tammy. Tammy eventually got together with Dwayne’s caregiver and moved into the apartment next door. Her bedroom and Dwayne’s bedroom shared the same wall. He could hear them at night. Then she tried to keep his “son” from him. Tammy was not a nice person.  

Parenting was very challenging for Dwayne as well due to his handicap. One time when he was still with Tammy, Dwayne and their baby accidently got locked in the van. It was twenty below outside and they were locked inside the van without heat. This happened over the weekend. Tammy was desperate to find someone to unlock the doors. Dwayne sat inside helplessly watching. It could have gotten dangerous really fast. Dwayne also had issues parenting his two older children. His little girl loved to sit on his lap but he could never hug her back. He couldn’t drive them anywhere or do anything. It was at this point that I saw Paul play the part of dad. He took Dwayne’s son Dan fishing, a hobby that he used to share with Dwayne before the accident. We took the kids to the zoo and had them stay with us sometimes. When I first started dating Paul, it was attractive to see him being a positive role model for the kids. He still was caring towards his best friend even after his friend made some terrible mistakes in life. He also had no problems treating his friend like a regular person, going out with him even if it meant emptying his bag or feeding him. He was not squeamish, nor did he complain. His compassion was touching.

Dwayne was the best man in our wedding. A couple years later, Paul was the best man in his wedding. His new wife had some major flaws, like having an absolute filthy house and allowing her children to run wild. But I have to give her credit for marrying a man that she would never have a physical relationship with and had to care for. Six weeks after he was married in his church, Dwayne was buried there. He had a heart attack and died in his 30’s. He will be gone for 15 years this year. What an avoidable tradegy that affected so many lives.

Fast forward time a bit more, Dan grew up and asked Paul to stand up in his wedding in Omaha. He wanted Paul to be there to represent his father. We flew into Omaha for the wedding over Thanksgiving. Dan’s in-laws welcomed us like we were family. We ate Thanksgiving meal there and played a lot of games. They seemed to have a very close knit family. His wife’s father was dealing with cancer. He showed us pictures of himself, a big guy at 300 lbs before cancer. He lost 200 lbs and was skin and bones. At this point, I want to tell you that everyone lived happily ever after. Unfortunately things didn’t go as planned. Dan and his wife moved across the country. He was in the military and was deployed overseas. During this time, Dan’s father-in-law passed away. Dan’s wife moved back home and the marriage fell apart almost a year later. But while we were in Omaha, everything was pleasant.

While we were in Omaha, we met up with one of my best friends from college. She took us to the Omaha zoo. It was hands down the best zoo that I have ever been to. It had an open concept. You didn’t get the impression that the animals were unhappy in their cages. The aquarium was my favorite display as it submerged the viewer in a tunnel surrounded above and at all sides with beautiful water creatures. Great job in your design Omaha zoo. I just wish the marriage turned out as well.

The travel diaries, Virginia Beach

The trip to Virginia Beach was the first vacation that I took as an adult with kids. I probably shouldn’t have gone. I was probably only invited as a nice gesture, but I took the opportunity and ran with it. I was invited by my mom who was going on the trip with Luke and his future wife Emily. I think that they seriously thought that I wouldn’t go. Paul couldn’t take a week off of work as he was a one man show back when his business was in its infancy. People thought that I was crazy for going because I decided to go with a newly turned two year old and a newborn. We loaded up a rental van and headed across the country on an over 2,000 mile round trip road trip.

We didn’t make any reservations in advance, we just looked at a map and drove as far as we could in a day. Our goal was to see the ocean. The trip in and of itself was pretty uneventful until we got closer to the ocean. What I really liked was that we decided to eat at a restaurant at the top of a hill in West Virginia. It was a winding drive to get to the top of the hill. It was exciting because WI is pretty flat. Another thing I noticed, in WI we have about 2 bars for every church. Bar, bar, Lutheran church. Bar, bar, Catholic church. But when we went to WV it was church, church, church, church, and bar that was shut down. What different cultures depending on where you are in our big country.

When we were almost to the ocean, I think we were touring a fort or something when I ended up feeling sick. I laid down on the grass while everyone took the tour. The long body jostling miles 2 months after having a C-section, the sleepless nights of being up with a newborn, and keeping up with an energetic 2 year old finally took its toll on me. The day we planned to go to the ocean, I ended up in the ER. I had a foreign doctor with a southern accent that I needed a nurse translator to understand. He wanted to hospitalize me. I got hooked up to an IV and they put a catheter in me. He wanted me to go on some heavy duty antibiotics that I would have to stop nursing my baby with. I refused. I told him that I only had a bladder infection and that being hundreds of miles from home that I couldn’t just stop nursing as I had in no way prepared to buy bottles and sanitize them on the road. Plus we were going to see the ocean TODAY! I got some regular antibiotics and we were on our way.

We finally got to the ocean in the afternoon. The doctor said that I could not swim so I walked in the ocean for the first time up to my knees. I remember hearing a mother screaming up and down the beach because she lost her child and was afraid he might have drowned. Someone was kind and offered me their canopy when they were leaving as I didn’t have an umbrella to protect my baby from the sun. We stayed at the beach for 2 hours and then had to leave to meet up with a friend of mine. So our long trip to the ocean was again cut very short because of me.

The next day we did some touring of the area. I remember going to tour a president’s plantation house in the afternoon. We got there right before the last tour of the day. My mom and I were going to take turns with the kids. We planned to go on separate tours but since it was the last tour of the day we couldn’t do that. Once the tour group of about 20 people got inside, they locked us in. With a 2 year old and a newborn this incited some terror within me. Sure enough while the tour guide was explaining about the original antique rug that we were standing on, my son spit up all over it. My 2 year old had a tantrum at the end of the tour. It was great being locked in while she was screaming and crying. Oh, and the dirty looks. I can laugh now because I will never have to go through that again. Phew. On the way out, we walked through a pet cemetery. I guess that really was a thing.

After that we drove through the night to get back home. I crossed going to the ocean with little kids off my bucket list. What a trip!

The travel diaries

One of the big items on my bucket list is to visit all of the continents in this world with the exception of Antarctica.  I can see myself taking the road less traveled. I have already started treading off the beaten path armed with nothing more than a camera and a story to tell. I decided to start a travel series this month. Who knows, maybe I will talk about your town as an outsider looking in to your world for a brief moment in time.

I always wanted to travel. Growing up the only “vacations” that we ever took with our whole family was going up north to the cabin. There were 3 trips that we took with the partial family. The first trip we drove down to Texas to take my autistic brother to the hospital. We didn’t stop anywhere along the way (except a hotel) or do anything fun so I am not sure that this counts as a “vacation”. The second trip we went to South Dakota to a conference with Aunt Grace. On our way back to WI, we drove 10 hours out of our way to stop in Canada for 20 minutes to get my aunt some tea. I wrote about this trip in one of my first posts. The third was a bus trip to South Dakota with my aunt and uncle’s church when I was in grade schoool. It was hot and stormy, a severe thunderstorm came up while touring the Badlands which was really awesome if you weren’t afraid of storms. The AC ended up going out on the bus and a lot of people felt sick. A teenage boy got upset and ran away. We saw the outdoor passion play. Just before the crucifixion scene another freak storm came up. Everyone went running as the thunder crashed and I got lost. That is my childhood travel experience in one paragraph.

Paul also wanted to travel. You can imagine how much traveling he did growing up with a poor single teen mom. He was 40 the first time he was on an airplane. Last week he asked me if I would be open to sailing around the world. I said that I wouldn’t be opposed to the idea at this time, but lets do the Great Lakes loop first. We both desire to live a life of adventure.

But how are we going to have this lifestyle living on a variable income? The first thing that we did was buy a modest house. The last thing that we wanted was a high mortgage payment that would trap us. We live cheap. Up until last year, both of our vehicles were over 10 years old. We bought our kitchen table at a rummage sale. Our bedroom set is the same one that I had as a kid complete with broken drawers. A majority of our furniture including a TV, couch, love seat, recliners, deck furniture, end tables, and lamps were inherited from deceased relatives. We bought our hutch at a good price when my aunt got a divorce. We bought our entertainment center used from another relative. Oh my gosh, I didn’t even realize what a bunch of cheapskates we really are. Not that I have to justify spending money on a vacation once in awhile to any of you anyway. Geez.

I will be going through one autism diary a month as well. Until then I promise to entertain you with travel stories off the beaten path… 

Living on video

Today I saw my whole life pass before my eyes. No, I didn’t have a near death experience. I sat and watched my past fly by in fast forward as I was sitting with someone going through the old family videos. I started the project of converting those old videos onto hard drive.

I saw my grandma today. It was just a fleeting glimpse. She was living on video, beautiful and younger than my parents are now. Someday I will see her again. Until then, I will have to be satified seeing her at birthdays, concerts, and weddings living on video.

The cheapskate marathon

I admit, I am a bit of a cheapskate. I signed up for another marathon this week in order to save $10. But I have learned the lesson over time when to be a cheapskate and when not to. So saving $10 forced me to make a decision early, one that I was probably going to make anyway. So I decided to plan my whole race calendar for the year. I am planning on running a marathon in May, a 10k in June, my first tri in July, and ending the season with a half marathon in the fall.

The best thing about running a marathon in May is that I have the whole summer ahead of me to plant my boney carcass on the beach somewhere. Last year I gave up a lot of relaxation time to train for a marathon in the end of August. It will mean more long runs on a treadmill. Maybe I will have to tape pictures of myself bikini clad, beach bound with umbrella drinks to the treadmill for motivation! Hmm. Lol.

Then there was that one time when I learned that being a cheapskate is not the best move. One of the biggest lessons I learned is not to accept items from people who are cheaper than me. Items like an avocado green 1970’s model clothes dryer. When Paul and I got married, we had a little starter house that came without appliances. Paul’s mom and step-dad gave their old gas dryer to us which was very kind of them but didn’t work out too well for us. First of all, we didn’t have the hook ups in the house for a gas dryer. Paul’s step-dad had some old copper pipes that they ended up using to hook up a gas line for the dryer over a weekend.

This is probably the part where you want me to tell you that they screwed up the gas line and blew up that tiny starter house. Sorry, there wasn’t even a gas leak. The dryer itself was not in good working condition. First, I had to put the clothes in the dryer. Then I needed to manually start the dryer by putting my arm inside to get the drum rolling. Some times the process itself would twist my arm. The big kicker was that the darn thing didn’t even dry well. The hardest part of the whole process was that after all of the work that was done to install it, we had to say that we didn’t want it anymore. That was not an easy thing to say to my new in-laws.

So over time, part of the life learning process is when to be cheap and when you have to fork out the dough. I think I made the right decision about the marathon. Bring it on!

Ending the holiday season

I didn’t tell anybody this earlier, but I started the new year off on the wrong foot. We had a couple of friends over for New Year’s Eve. Everything went well and the last people left at 1:30 AM. Paul and I finally made our way to bed around 2. At 6 AM, a noise woke me up. Somewhere between 2 and 6 AM, our furnace went out. The house temp was under 50 degrees. We ended up having someone come out at the crack of dawn on new year’s day receiving holiday pay to fix it. It was a rough start. 

Today we took down our Christmas tree. I put all of the decorations back in the crawl space and dug out all of my old journals. I don’t know how quick I will go through them to be honest with you. I always have a rough time this time of year with the lack of sunlight. Even though I take massive doses of vitamin D, my thoughts and emotions tend to be dark. Just thinking about the past can bring me down on the sunniest of days….so this month might be light and fluffy like the winter snow. Talking about the winter snow, Paul and I were able to get out and cross country ski for the first time on the skis that we bought last winter. What a workout! Sure made me feel out of shape, especially since we saw a friend of ours there and he did two laps to our one. 

Yesterday I told you that we were going to one last Christmas party at my uncle’s who happens to be a clean freak. Well, I am embarassed to say that it was me this year that made a mess. That’s right. After being at the party for about a half an hour, I cracked open a bottle of beer. I took 3 sips and proceeded to spill most of the bottle everywhere. It went down my shirt with a majority of it landing on my pants and their off white carpet. I greeted relatives coming to the party looking like I peed my pants. My uncle said I could leave behind some money for the carpet cleaning. I am glad he was just kidding. Or was he? He didn’t freak out though like the story I heard of when my cousins accidently knocked over his fish tank. Other than looking like a complete idiot, the party went well.

Our staff party a couple weeks ago went great too. We took our employees to a painting class. It was so much fun. And I didn’t suck at painting. I was happy to be average. Out of the four of us that went, not one single person between the ages of 30 and 52 ever painted on a canvas before. Checked that off my bucket list and would love to do it again. 

Other than that, I have been trying to upload a video of my daughter and I singing. I haven’t been successful at that. I will probably figure it out by July. Geez. We sang our Christmas songs at the party yesterday. Every year my aunt insists that we sing. My daughter moves people to tears with her singing. She wants to spend the summer singing and performing on tour. She is auditioning to do that next month. When my cousin heard that, she was bummed out because she wanted Angel to sing at her wedding this summer. Angel just sang at my brother’s wedding a few months back. Angel and I have very similar voices, except that hers is well trained and mine is not. I used to be the one asked to sing at weddings, now it is her. When did she become better than me??? She used to ask me for advice and now she tells me what to do. I listen to her because she is right, but can’t help but feel hurt that I am no longer wanted. I am happy that she has had so many opportunities that I didn’t.

Sometimes it is hard for me to accept this whole aging thing. 

One last Christmas party

This afternoon we will be going to one last Christmas party. It is for my mom’s side of the family. Unlike my dad who was an only child and only grandchild on one side, my mom comes from a very large family. We usually get together twice a year as a group. Collectively my mom’s siblings are hard working, average (not eccentric), and slightly neurotic.

The uncle’s house that we are going to today would fit into the above category very well. I am not sure why year after year they host the family Christmas party which usually attracts between 30 and 50 family members. My uncle is an extreme clean freak. I have never seen any clutter or anything dirty or out of place. Last year during the party, I saw my uncle on his hands and knees scrubbing the bathroom floor. I have a sneaky suspicion that my autistic brother may have missed the target. Years past, he has followed around his guests with a dust buster, vacuuming crumbs or any speck of dirt that they may have dragged in.

Last year we were at his house for the Packer game. When the game was over, he asked his guests if he could get their coats for them. The game is over, now get the hell out! His wife kindly suggested that he take the dog for a walk. After he got back, he seemed to calm down a little. I have another aunt that is also a clean freak. We went camping with her one year near her house when a huge storm came up out of nowhere. We were wet and cold. We ended up huddling in her garage. She didn’t want us to come in her house because we were too dirty. I guess that explains why I am slightly neurotic. It’s a family thing.

When we all get together, everyone is best friends. There is some animosity over some people getting more family heirlooms than others when their parents passed away. I imagine that this would be very hard to do fairly. One other thing about my family, they are very competitive when it comes to playing cards. I wouldn’t recommend a potential spouse of the cousins to join in a card game. Winning trumps being kind to each other in this one area. My mom just found out that her brother refused to go to my brother Mark’s wedding this past year because a couple of years ago he passed in a card game when he should have picked. God forbid!

I’m sure that we will have a good time today. Just stay out of the card games and don’t make a mess. Other than that, they are the nicest people that you would ever meet. There is a lot of laughter and fun.

Letting go of the present

I think that my focus this new year is going to be letting go. Now before you start to get any ideas, I am not planning on letting myself go. I just finished an 18 mile run. Well, I think that it was 18 miles anyway. Twice during my run I accidentally hit the emergency stop button on my treadmill which upset me because I did not know my exact mileage at the time. The second time I almost got propelled into my TV. Nothing like being thrown into a crime show. LOL

Not only do I want to start the process of letting go of my past instead of outrunning it, but I am also faced with something that I never thought would happen. I am not needed as much anymore. My kids are growing up. My oldest will be graduating from high school this year. If everything works out as she has planned, she will be leaving our house in 5 months. She will become an adult. Gulp. Yesterday my middle child drove a car for the first time. He got his temps this week. Last night my youngest child babysat so someone else could go out for New Year’s Eve. I don’t even need a babysitter anymore for my youngest child.

When this whole process started, I never pictured in my mind that someday my babies would grow up. Some days I wished for it after sleepless nights with a newborn, toddler temper tantrums, potty training, math homework, etc.. When did time change from wanting them to grow up to wanting time to stand still for a little longer? In five years, I will be done with this job. I’m doing the best that I can so I don’t look back with regret. Despite some relatively minor teenage issues in comparison, the burden of responsibility is starting to lift. I will finally have time for the first time in my life to do what I want to do.

It’s time to start letting go…