Especially special

Several weeks ago I attended my daughter Arabella’s first choir concert of the school year. It was our foreign exchange student Clara’s first choir concert ever.

I sat down in the theater only to have a teenage girl with Down Syndrome sit in front of me. In all honesty, sometimes I get triggered by people with special needs being a SN sibling. It brings up a smorgasbord of emotions.

The girl was so excited about the concert that you might think she got front row tickets to see Justin Bieber or whoever the hottest pop star is now. She waved her arms, clapped loudly, and cheered for every performer. Her family catered to her the whole show as if the show was about her. I didn’t find it too annoying, just triggering.

At this point, I thought, “Well, that figures!” because a few days before I was trying to free up some of my repressed anger related to being a SN sibling.

I personally think it is wrong to sacrifice for a SN child at the expense of the other family members. Children should be treated as equally and fairly as possible. It’s not fair to SN children to treat them like something is wrong with them either. I understand that SN children oftentimes need special care. I’m not talking about that.

I’m talking about parents that expect you to treat your sibling like every day is their birthday. It’s almost expected by everyone that you treat them like royalty because their disability royally sucks! You are supposed to be the one waiting on the sidelines to cheer them on when they participate in the Special Olympics. You are selfish for wanting to live your own life.

We went when he wanted to go. We stayed home when he didn’t. It didn’t matter how long it was planned. He was the god we were expected to worship. The life of our family revolved around him.

You are expected never to fight with your SN sibling. What kind of monster are you? You are expected never to feel jealous when they get all of the attention. You can’t cry when they hit you because damn you are so lucky to be normal. It is almost expected that you become a special education teacher because having a SN sibling changed your life. How noble.

You shouldn’t feel angry because your parents couldn’t afford your swimming lessons because they had doctor bills to pay. You shouldn’t feel angry that you had to drop out of the show because your brother had to be hospitalized. Why are you upset you lost your best friend because your brother attacked her? You can make more friends. He doesn’t have any friends. Why don’t you want him in your life after he hurt your child? He is your family too.

You are so selfish to want to have your own life! Ungrateful! Look at him. Do you think he will ever have a life as nice as yours? What is wrong with you? Nothing, unfortunately, I am normal.

These things cross my mind when I see you cater to your SN child. Yes, I am selfish. Yes, I am a monster for feeling this way. I am not here to please anybody. In fact I might like you more if you hate me like I hate me. Just like everyone else and their damn expectations. Blah, blah, blah…

Blogging therapy is going well today. Yes, I can see that you are making progress processing your anger.

The show was over. Most people left the theater. After things cleared out, I stood in the aisle and took pictures of Arabella and Clara. The SN girl pushed by me and yelled at me to get the hell out of her way. Her family giggled as they passed me as if her rude comment was the cutest thing ever. Did I not notice the sparkly butterflies and rainbows that she farted out of her ass?

I would like to think that most parents would not shrug off their teenager treating a stranger rudely in public. But she is special, so she shouldn’t be corrected for her bad behavior since basic rules of etiquette apparently don’t apply. Isn’t everyone special and unique just like everyone else? I think I was taught that in school. Or is there a class of especially special specials??

My brother did things like this in public and worse. Sometimes he would physically attack strangers, children. Treating people poorly should never be acceptable. There should never be an excuse for that. That is what makes me angry. At the very least, teach your child it is not acceptable to treat people this way. Make them apologize. Apologize for them. Whatever, at least act sorry. I didn’t find it funny.

Of course, it had to be me that this happened to.

But I suppose if I was like everyone else, I would’ve brushed it off and forgotten about it already.

 

I finished my book!!!

Tonight I’m celebrating.

I finished my book today!

I know that now the hard work begins…editing…trying to find a good publisher. But tonight I will put all those worries aside.

Tomorrow the video I created will be sent out to hundreds of parents of autistic children. Then it will be posted online to be viewed by countless people. I am nervous and excited to see what will happen.

Thanks for your continued encouragement and support!! I just wanted to share the good news!

Done, done, and almost done

I am so relived that all of the difficult things over my head this month are now done.

I finished my first 50k. I wasn’t sure I could do it. Being anemic and having a rough summer health wise made me really question my ability to get it done.

Today I sent in my video to the local autism chapter about what my childhood was like being a sibling of someone who was violently autistic. I also gave tips to parents on how to support their non-autistic children. I created a new Facebook account and a support page for siblings.

Making the video was very difficult, not just emotionally either. Somewhere in my mind I expected that I would look like someone on the news. I would be smooth, polished, and look like I was 25. The joys of being a perfectionist!

I found that I couldn’t make the video when other people were home. My husband walked in the room while I was recording and I had to start over. So I decided to tell everyone when I was recording to not walk into the room. But I could still hear the bass from my son’s music. The beat of the music banged in my head distracting me. I was paranoid that everyone could hear it.

Then I waited for the small window of time where I was completely alone in the house. I was still hoping that the dog wouldn’t bark. I created 3 fifteen to twenty minute videos on my phone. After I was finished, I watched the videos. They were okay. I was very critical of myself. Man, do I look old and tired. Look at those big black rings under my eyes. It was hard talking for that long in front of a camera without a script. Plus I was never one to like hearing recordings of myself singing or speaking.

Then I had problems sending the videos to my contact person because the videos were so large. It took me 6 days to figure that one out after a day and a half of actually making the videos. I wanted to wear the same shirt, hair style, and makeup to look like the whole thing was effortless. But trust me when I say it was not. I deleted more recordings than I kept.

Right before sending them out, I had a moment of sheer panic. It’s that awful feeling that you get before doing something risky, scary, but exhilarating. Would the videos be good enough? Would my best efforts suck? What would my family think? I feared success. I feared failure. My thoughts fluctuated between what I created sucked to everyone is going to know everything I never wanted anyone to know about me. I wanted to delete all of the hard work I put into this.

It is finished now. I sent them. Whatever happens, happens.

Next week I will go back to writing my book. I finished my research. I read about 40 journals written my myself, my mom, and the schools my brother went to. I read countless letters, notes, and articles about my brother. I even went back and reread my blog searching for clues. It’s done. I have everything I need to finish the book.

I am done, done, and almost done. If I heal and help other people in the process, it is worth it!

More than a shot

I took a pregnancy test today.

I had to take the test before I got the MMR vaccination which contains a live virus. Back in the 1990’s, when I was pregnant, my titer showed I was not immune despite receiving the shots in the 70’s.

I decided to get a booster shot because of the recent outbreak and my love for international travel. I might want to go on a mission trip in the next couple of years which will also take me off the beaten tourist trap path.

I started to think a bit more about vaccinations, more specifically the MMR vaccination. With the measles outbreak, I saw a lot of hateful comments made towards the anti-vaccination folks. I saw babies that wore shirts in photos saying, “I’m vaccinated because my parents aren’t morons”. I found this to be offensive because I’m sure most parents that don’t vaccinate are not morons.

Perhaps my opinion is not popular, but stick with me for a moment.

I had my first baby in 1998. In 1998, an article was published in a medical journal linking the MMR shot to autism. It caused a huge scare that I believe hasn’t been fully eradicated to this day. At that time, I was more fearful that my children would be severely autistic like my brother than to get measles, a disease that I’ve never seen anyone contract in my lifetime.

Later, after the article was published, we were told that the link was a sham. Being a very logical person, I wondered what kind of medical journal would publish crap research findings. Can anybody publish any research article that they want in a supposedly reputable medical journal?

I also thought about conspiracy theories. Here you have huge pharmaceutical companies making big money off of vaccinations pitted against a small probably under funded research doctor. Of course there wouldn’t be a link. Follow the money. What were concerned parents supposed to believe? You can’t just erase something you already saw. Shame on the journal for publishing the article in the first place if there were so many issues with the study’s validity. It caused so much unnecessary fear.

It was horrifying and I struggled with making the decision to have my children get the required vaccinations. I am happy to say that my children are fully vaccinated. I thought the best way around it was to vaccinate my children with the MMR shot after they safely passed the age when most cases of autism are diagnosed.

I feel angry with people who quickly judge others for not vaccinating. They are usually not morons, they might just be fearful like I was. My babies were born at the height of the autism linked to vaccinations scare.

I think that most people who choose not to vaccinate have their reasons not to. It is not lazy parenting. Believe me, it is a lot more work to choose not to vaccinate. I did receive some criticism for doing things on my timetable. But even if there was a small iota of a chance that vaccinations caused autism, I needed to be careful. Where those people that shamed me going to come in my house and take care of my child if he/she became autistic?

I honestly don’t know if I would have the strength to live through it again this time as a parent.

I have a lot of respect for people that grew up with a special needs sibling that end up becoming a special needs parent. I don’t think I have the courage to fight that battle twice.

I get angry about talk of forced vaccinations. Shouldn’t parents have the right to make that choice for their child?

I think pro-vaccine people would be more successful listening and being empathetic to the concerns of parents who don’t want to vaccinate. Don’t treat them like they are a bunch of morons because that won’t get you anywhere. Morons blindly follow. But educated people question and try to make the best decisions they can.

I am pro-vaccination, but I strongly believe that the parents should make the decision and be treated respectfully whatever they decide.

 

 

Hurt again

I felt a burning fire rage within me today. I think it was the combination of a lot of different things that ignited the fiery red flame.

Yesterday I wrote in my book about one of my most painful early adult experiences. Previously in my writings, there seemed to be a separation between what I was saying and how I felt. There has been an insulation protecting me from the words. Yesterday it was removed and I felt angry.

My mom always told Matt that it wasn’t his fault he was violent. Sometimes she told him he was having a seizure after being exposed to loud music. Most of the time Matt was told that he was having an allergic reaction. It was an accident and not on purpose. The school told my mom that they wanted Matt to be told it was wrong when he hurt someone and to have consequences for his negative behavior.

That never happened. Six months later Matt got arrested at school for assaulting his teacher’s aide. She was pregnant at the time and it took 2 adults to get him off of her. Matt’s aide was my childhood best friend Shelly. I was the maid of honor in her wedding. We were best friends forever, or so I thought at the time.

When I got married, Shelly wasn’t invited to the wedding. I had to choose between my family and my best friend. My mom had the attitude of oh well you were growing apart anyway. But if we grew apart and the friendship ended it would’ve been my choice, but it wasn’t. It tore our whole friend group apart.

It was very painful to lose a best friend, all my close friends really because my brother attacked her.

I was rage cleaning this morning as a result.

I had to take a step back from running. My Boston marathon friend contacted me to go running again. We ran 8 miles together at breakneck speed. Then she told me that I really needed to work on hill training. I pushed it really, really hard and ended up hurting my ankle. Now just walking gives me pain.

Something else happened too. Someone I know told me the story of how her son recently fell asleep while driving and caused a fatal accident. After hearing her story, I started feeling anxiety driving again. It started by not sleeping well one night, then driving Arabella and her friends somewhere for her birthday. I started to worry that I would fall asleep and kill someone too. For the last couple of weeks, my driving anxiety has been back and I am worried that it is going to turn into full blown anxiety again. I worked so hard to get over it.

I have just been feeling angry and frustrated by the things I have experienced and the things I am experiencing. My son had some friends overnight and I waited until 1 PM to vacuum near them. I didn’t say one word to them but they seemed so terrified of my anger that they went from a dead sleep to packing up all of their stuff and leaving.

My son saw me rage cleaning and asked if he did something to make me so angry. I told him that it had nothing to do with him really. He pressed me for more details and I ended up telling him about my childhood for the first time. He is almost 19 and will know all about it when I publish my book anyway. We had a really nice conversation for almost 2 hours. In that time my anger dissipated.

I’m not sure what is going to happen, but I plan to keep writing no matter how hard it is or gets. Sometimes it is very hard to stir up my demons because I don’t know how I’m going to react. This has been my biggest obstacle so far, but I refuse to give up. After all, that is how I hurt my ankle. Sometimes I need to learn when it is time to ease up. That’s never been my strong suit.

It sounds kind of funny. Most people complain that they don’t have my determination, but all I want is the ability to relax and not be so hard on myself. So here I am, hurt again.

Amongst the weeds

I wouldn’t say that I am the overly jealous type, not about material things anyway. The biggest thing that causes me jealousy is relationships.

I felt jealous when your parents moved up from a southern state just to be closer to you. I should have been happy for you, but sadly that was not the feeling it triggered.

The last time I saw my parents together, they were fighting. My dad went almost a year without showering when my mother said she couldn’t take it anymore. Now she said that he must shower once a week or there will be consequences. On that day, my mom and I went somewhere. When we got back, my mom asked my dad if he showered yet like he was a small child. He did not and she yelled that he better hurry or he would be in trouble. I would never ask them for marriage advice.

My dad did not attend Alex’s graduation. He did go up north with the rest of the family (not including us). He sat around all weekend in his underwear. This bothered my SIL Carla greatly and she complained about him. Carla and my brother Mark helped clean out my parents shed. Carla said now that it is cleaned out a little, they can fill it with more crap. Or maybe they can buy another car. Carla said she would love to buy a hearse for my dad. It was funny, yet it was not.

I felt jealous when your brother told me he was going to move closer to home to help you and your husband raise your first child. I know your family will be there for you anytime you needed them. I could probably count on one hand how many times we were able to get away when our kids were little because we didn’t have anyone to help us.

I had to schedule my 3rd C-section to be in the hospital over the weekend so my husband could watch our other kids. He just started his business and had to work on the day our last child was born. After he came back from working a few hours, my mom dropped off our other two children at the hospital because my brother Matt had an appointment. Matt always came first, even on the day I gave birth.

I found someone else with demons. We hold each other’s hands as we walk through our own hell fires. Paul is the only person I can count on and I trust he will be there until he can’t be. We’ve had to rely on each other.

Paul never had a dad. His mom had a brief marriage when Paul was little, but she left her husband because she said he was abusive. Martha did remarry after Paul grew up and left home.

Paul did not have one single person from his family to invite to our son’s graduation, unless you count his step-dad. His step-dad Darryl attended but brought a new girlfriend that we met for the first time that day. Darryl has moved on with his life. Paul shared his grief over the thought that his mother will no longer be remembered. He is an orphan. His whole family is gone.

Paul grew up with a great void. I grew up in an environment of dysfunction and abuse. We had to rely on ourselves to survive. It gave us grit and strength beyond belief. But there was no one to turn to when we needed help or advice.

It’s tremendously hard to create a healthy family without having a firm foundation to build our house upon. You may envy our fierce drive and independence, but behind it lies brokenness, emptiness, and pain. Maybe you envy our financial success, our big house, and attractiveness. But I’ll tell you what. We both would give everything we have in exchange for a healthy family of origin.

It’s amazing that we survived and thrived as beautiful flowers among the weeds in which we were planted.

 

 

Write, right?

It’s been a busy week and I haven’t really felt like writing.

Most of the time I have no qualms about throwing it out there. But for some reason this week I’ve felt impersonal. I want to keep my distance and my thoughts to myself. I worry that I’ve already shared too much.

I feel frustrated. My thoughts are fluctuating about my writing. One day I have great confidence. My book will be a bestseller and I can’t wait to chronicle my descent into despair. The next day I want to walk away from it all and not open myself up to be vulnerable to the world.

I don’t think I’ve ever read a book that has been as personal as mine is going to be.

Word has gotten around that I am writing a book. I got a call from a publisher this week. She wants to meet for coffee to discuss my book. She said that memoirs are flying off the shelves right now. She wants me to send her a sample of my book. I am thinking about turning her down, but I am not sure if that is a smart idea. She is a small publisher that mainly publishes works of fiction.

I am not ready to deal with this yet. I want to take my time and write a great book before I worry about finding a publisher. Then I feel bad because I have some good friends who wrote great fiction books and haven’t been able to find a publisher.

The end of the summer, I will be public speaking about being a sibling with an autistic brother. My contact said that once I have my book written, she had someone interested in publishing. I would prefer to publish my book in the mental health memoir genre. Now I will need to reach out and contact them to see what my options are. It is all very confusing as a first time author.

All I want to do is write my book and not worry about anything else right now. The publisher said that if I finish writing a book, I will find myself in the 1% of the population who has. That is rather exciting, but I have no interest in being an author.

I just want to write my book. I’m not sure what I’m going to do after that. I can see myself doing public speaking and being an advocate for families, especially siblings, of the disabled. But I haven’t even done my first public speaking stint yet. Maybe I won’t like it. Maybe I won’t be good at it. The thought of public speaking about something this personal is starting to fill me with anxiety.

I’m not sure where this path is going to lead me and I am filled with doubt. But I think I need to keep writing.

Write, right?

Outrunning my demons

Arabella skipped school today. She was very upset and was crying this morning because she did not get cast in the next community theater show.

For some reason, it brought back memories for me of the time I tried out for a community theater show when I was a couple of years younger than her. Maybe it’s just because I am almost to this point in my book.

I remember sitting outside in the sunshine with other children that summer working on my lines. I got the part of a princess. I was a pretty little girl with the sun hitting my long golden hair. I was happy and excited about my part. It made me feel like I really was a princess.

But something went wrong. My brother Matt had to spend the summer in the hospital. I had to drop out of the show because my brother was really sick. (It took me 20 years to audition for another show).

After that, my whole life changed. My brother became home bound after getting out of the hospital. I saw the paperwork for that yesterday. The original paperwork gave him a period of 2 months to be educated at home. But he was home bound for over 3 years. My mom quit her job and pulled my other brothers and I out of school as well. It was the time of the great isolation. Few people were allowed to come in and we rarely went out.

I am making excellent progress on my book. I try to work on it several hours every day. There are usually one or two days a week when I cannot. Right now I am over 30,000 words and am nearing the halfway point in my story.

I’ve decided to title my book ‘Outrunning my Demons’ with the subtitle of ‘What Life is Really Like with a Mentally Ill Sibling’.

I know my daughter is very disappointed right now that she didn’t get a part in the show. I feel bad for her. But in a few days she will be on to something else. She probably won’t even give it another thought a couple months from now. But I will always remember the summer, over 30 years ago, that I could no longer be a princess.

Depression

As I was getting ready for the last show, I saw a car pull up to the theater long before the show started. It was a navy blue car, the same color, model, and make as my dad’s car. The passenger door opened and a very large man struggled to get out of the car with a cane. He had his head down, but I could see a mass of white hair and a long white beard.

I knew my mom was coming to the show. But was my dad? Would he finally tell me that he was proud of me? The man looked up and I realized that he wasn’t my dad. I felt sadness for what never was and what probably will never be.

Depression, it hit me the hardest in my late teens and early 20’s. As I mentioned before, my childhood was the hardest period of my life. My brother Matt, who is less than 2 years younger than me, had some very serious health and mental health issues. He was violent towards me, towards others, and to our pets. He hit me, pulled my hair, and clawed my arms on a regular basis. I think he killed my cats. He threatened to poke my eyes out with a knife. The list goes on…seriously, just read the book once I finish it.

My dad was depressed too. He withdrew from the family. When he was home he would sit on the couch and ignore us while watching TV. If the house was too quiet, I worried that I would find him dead somewhere.

My dad is the most pessimistic person I know. His life mottoes are ‘sh!t happens’ and ‘life’s a bitch, then you die’. He never hugged us or told us that he loved us. We never had father-daughter ‘dates’. Nothing. Instead he told us that we were stupid and laughed at our feelings, dreams, and fears.

I consider myself a realist, which probably is just a nice way of saying pessimist. But I will never be like my dad. I will never tear someone else down to lift myself up.

My dad is everything I don’t want to be. He never took care of himself. He ate a lot of junk food. He never exercised. He weighs almost 350 lbs. He hasn’t brushed his teeth in years. He hasn’t showered in almost a year. He is lazy and hates to work. He doesn’t clean up after himself and is a hoarder. Once one building is full, it’s time to build another shed. He doesn’t finish anything he starts. My parents built their house in the 1970’s and the upstairs bathroom still has not been finished. Simple repairs lie in disrepair for years. He is even too lazy to bother getting dressed if he doesn’t want to.

Maybe that is why I do everything the opposite. I eat healthy, run marathons, can be a workaholic, try to maintain a healthy weight, get things done right away, and am a clean freak. I don’t like things that he likes just because he likes them. But the truth is, I am still his daughter. I can’t hide from that.

In early childhood, when my dad emotionally checked out, I was called up to the plate. I started trying to fix the problems at home. Nothing was kept from me. I was handling responsibilities that no child should have to handle.

A 6 year old should never have to watch her 3 younger brothers in the lake even for a few minutes. My youngest brother almost drowned that day.

A 13 year old shouldn’t be making the call whether or not the neighbor should come over and put our dog out of her misery when she was suffering a painful death. I made the wrong call and I have to live with that.

A college student shouldn’t have to help raise 3 teenagers. But that is what I was doing.

I home-schooled one year of middle school and two of high school so I could help my mom out. Even though I attended college in the drunkest city of the United States, I never went to a single college party. Most Saturday nights you could find me at home helping shower my disabled brother. Then I graduated from college, got married two months later, and right away started a family of my own. At times I feel like I am suffocating.

Sometimes I yearn to be the child I never was. In some ways, my kids are older than me. I gave them everything I didn’t have. The pendulum swung too far to the other side. I only told them the things they needed to know. I only let them be kids. I gave them few responsibilities and chores. I shouldered that responsibility so they didn’t have to. I was wrong. I realize that now. But how can we be functional parents if we both had nothing but dysfunction to model from?

I get depressed when I have memories of the horrible things that have happened to me. The PTSD depression is the worst I’ve ever experienced. Burying my painful feelings in the moment is a future time bomb. The feelings I’ve repressed have a way of coming out tenfold. The depression from that is intense and irrational. The urge to end it all is hard to fight. By the grace of God I was able to make it through to tell you about it. I want to say that will never happen again, but here I am stirring up my demons.

I actively mourn the childhood I never had. There is something joyous and magical most people experience that I’ve never had. It is utterly devastating. I don’t know if I will ever be able to get over it. It is the kind of depression that no pill can cure.

My life is everything I’ve ever wanted it to be now, yet somehow I cannot outrun the demons of my past and find peace.

 

 

 

 

 

 

Going home

Today my mom and I went to see Matt for his birthday. He spends the day at a program for autistic children and adults. While we were there, Matt’s caregiver asked him to tell us about his special morning in a high pitched sing song voice reserved for a small child. Everyone was optimistic and cheerful, except me.

I felt such sadness I could cry. My brother should be meeting up with his friends for his birthday, or maybe going out to eat with his wife and children after driving home from a long day of work. His normal isn’t right.

I feel such grief every time I see someone with a developmental disability, especially my brother, that I don’t want to be there. I feel guilty for visiting out of obligation. Visiting makes me think about the families and all of their lost dreams. He shouldn’t be putting stickers on a chart for good behavior, he is a grown man. It shouldn’t be that way, but it is.

I feel tired today. I slept good last night. But the night before was restless with nightmares. I was triggered by the developmentally disabled girl backstage. I heard people ask her sister what was wrong with her. I remembered all the times I was asked that about my brother. I got sick of explaining after awhile. They never asked about me.

Then I dropped my mom off at home. I went in and said hi to my dad. He didn’t get many birthday cards or calls this year. I wonder if it will be his last. He looks so old and weak. He rarely leaves the house. No one really cares about him much anymore, certainly not my mother. I want to reach out and help him. But he was a very cruel father. Why should I care? Why is it so painful to see the consequences of his bad choices when I was one of the people he hurt?

I walked through the house. There are still clothes from the 1980’s hanging in the closets. Hoarders. Piles of mail on the table. The same linoleum lies on the floor from my childhood worn with holes in it. Bags full of food line the floor. Dirty dishes clutter the counters. Nothing must be thrown away, but much more to be collected.

I feel depressed. But writing about it makes me feel better. I am starting to process how I feel and why I feel the way I do. I feel sad that my family is broken and nothing I do can fix it.

On the way back home, I drove through town and did not avoid it by driving through the outskirts. I drove by my Aunt Grace and Uncle Harold’s house. I drove past the area where my grandparents lived. I remembered how the town looked when I was a child. It was alive then with parades and festivals. But now it is a ghost town. Small town businesses closed. New houses stand where old homes once stood.

Everything has changed. But I still remember how it used to be back when my aunt, uncle, and grandparents were still alive. The town was alive then and that’s how I want to remember it with my loved ones alive in it. But that is not how it is anymore.

That is what it is like going home. The broken things still have not been fixed. The town and relatives that made my life magical as a child are no longer there. Emptiness.

Writing helps me process the way I feel. I think I understand why it is so hard to go home. Maybe you would feel the same way.