forgotten

One of the hardest parts about being a special needs sibling is being forgotten. It’s like I don’t even exist. Forgotten, no one would miss me if I was gone. It’s hard to get over the voice in my head that is on repeat saying that no one really cares about me.

Yesterday I went out to eat with my mom. At the restaurant, my mom noticed our previous dentist sitting near us. He lost his license to practice dentistry over a decade ago. He wasn’t the first provider that we had lose his license either. Let’s just say when traditional medicine didn’t heal my autistic brother, my mom went the alternative medicine route and some of those doctors were quacks.

My mom went over to talk to our dentist about Matt. She showed him all of Matt’s most recent pictures. On the way out, we said good-bye. I told my mother that the dentist probably remembered me. After all, I was the patient with the small mouth that no dentist could numb for fillings. My mom talked to the dentist some more about Matt, then asked the dentist if he remembered me.

The dentist said that he did not remember me. He had a very large practice and wasn’t expected to remember every patient. I was in his office so often that I still remember his secretary’s name. It was like a kick to the teeth. The polite thing to do would’ve been to lie. Yes, I remember you. How are you doing now? Instead he asked for my mom’s phone number because he would like to schedule a time to come out and visit Matt.

I told my husband about the interaction and he was rather appalled. But I told Paul this was the typical response.

As a teenager, the rare time I was with family friends or family, they would pepper me with questions about Matt. They asked how my brother Matt was doing with the same sympathetic frown on their faces. I was barely holding it together, but no one ever asked how I was doing or how my other brothers were doing. Yeah, just trying not to swallow a whole bottle full of pills here. But who cares?

As a child, I wanted something to be wrong with me so that I would be loved too. My babysitter told me if I wore her thick glasses and looked in the mirror, I would need glasses too. I wore her glasses looking in the mirror with a metallic gum wrapper covering my top teeth with a paper clip. I wanted to be special too.

I had a lot of stomachaches as a child. I could barely eat I felt so sick. But I wasn’t as sick as Matt. I didn’t need to go to the doctor. Matt’s valve between his stomach and intestines closed, and he almost died. What was I bellyaching about? I just wanted attention.

But as I am currently facing health issues, I wonder if I am just being paranoid. Maybe it’s just me wanting attention. Maybe it’s nothing and I am just crazy. I am probably just being selfish to focus so much on myself. Look at Matt.

It was always that way. It will probably always be that way. Seriously, who cares anyway? My thoughts and feeling don’t matter. I don’t know why I even bother.

I remember a special occasion with family several years back. We were supposed to go around the room and share something special that happened in our family over the past year. My mom spent 20 minutes in tears talking about all of Matt’s medical needs. She did not once mention that my brother Luke, who wasn’t there, got a HUGE promotion at work that year.

We are the forgotten ones. It makes me feel both sad and angry, hurt. But it was always like that. I should be used to it by now.

I didn’t feel that way about my dad. He pretty much checked out altogether. But in my mom’s life, the sun will around revolve around her special son Matt. Our accomplishments don’t matter. It doesn’t matter that Matt hurt us or our children. We should all work together to worship our god Matt because his life sucks.

My mother is a great person, a martyr perhaps. I feel guilty for my disloyalty. But the one thing that grieves me deeply, far beyond the memories of the physical pain of being attacked by Matt, is being forgotten. It’s hard to get over feeling like no one cares about me. Sometimes it’s hard to be caring towards myself. I feel selfish for sharing my wants and needs.

Forgotten.

 

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.

Allergy sufferers

This morning my blog friend LA wrote a post that really hit the nail on the head for me about allergies. LA was on a train and sat next to a woman who said she was allergic to LA’s perfume. LA got up and moved seats. But should LA have catered to the allergic woman or should the allergic woman offered to move? Whose shoulders does that responsibility fall on?

All my life I had to cater to my autistic brother’s allergies. He would become violent if he was exposed to allergens. That is what I was always told and that is what I always thought. But as I have been writing my book, in retrospect I have been able to see the situation with my blinders off.

It’s not that I don’t believe that Matt has allergies. I find it hard to believe that allergies could cause someone to act violently towards another person. He doesn’t sneeze, cough, or break out in a rash. It is possible that an allergen could cause a physical symptom that causes him to be irritable and lash out. But I no longer believe that smelling someone’s perfume could cause him to be violent.

Matt acted violently because he was severely mentally ill. He needed to be told that his actions were wrong whether he was capable of controlling them or not.

Meanwhile, we did crazy things to cater to Matt’s allergies. I wasn’t allowed to wear perfume. My parents got rid of their wood stove. Newspapers weren’t allowed in the house. No one was allowed to park in the garage for awhile because of auto exhaust fumes. My parents replaced their new curtains (new smells) with old blankets. We had to evacuate if the neighbors were spraying their fields. There were many other things as well that were very inconvenient and extreme.

But, guess what? With all of our catering, Matt was still violent.

I don’t cater to everyone anymore. It was hard at first since it was so ingrained in me to do so. Now if I host a party or holiday and I am expected to do all of the preparation, I make what I want and tell people if that doesn’t work for them to bring what they can eat for themselves. Believe me I’ve tried and I just about went crazy. This person is gluten free, the other is dairy free, another black pepper free, pork free, organic only. I wish I was kidding.

I’ve learned that the best way around it is to tell everyone what I am making and if that doesn’t work for them they can bring their own food (or host the party themselves!). I’ve made peace with the fact that I can’t please or accommodate everyone.

I do feel bad for people who are miserable from allergies. But it is also inconsiderate to  expect others to cater to you if your allergy is not life threatening.

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.

How I (possibly) stopped someone from joining a cult

I have some good news and some not so good news to share.

The good news is that my son had to work later on Easter than I thought he did. He was able to attend church with us Sunday morning. Of course, I didn’t find out about this until after midnight so technically the wee hours of Easter morning. My husband was scheduled to usher Easter morning, so I worked it all out that our son was going to go to church with Arabella and I to surprise his dad.

The not so good news is that my son hates our new church. He is convinced that we joined a cult. What I failed to mention to him is that we went from a Lutheran church to a Non-Denominational church. Big change.

With our new church we didn’t go through the whole process of Lent. In fact, on Maundy Thursday, Arabella and I were at the theater watching the recorded performance of the musical we were in.

I have been a member of the theater group for over 10 years, the longest standing member in the last show. We would typically get together after a show for a viewing. It was usually a celebratory event. We would laugh, have a few drinks, and just have a celebration of a job well done with all of the work that was put into the show.

This viewing was the most morose viewing I have ever been to. It was like attending a wake. The stage manager said that she preferred that it was not a celebratory event, meaning she didn’t want anyone to bring alcohol. I sure could use a drink to see myself as I really am. I brought beer. I had ONE beer at the theater.

I never did do well doing things that everyone else wants me to do. I have a rebellious nature. I am not a follower. I credit that to my childhood. My brother was called a “retard” and people looked down at me no matter what I did or didn’t do because of him. So I learned not to care what people thought of me. Not being a people pleaser is very freeing. You should try it sometime. But I do not win a lot of popularity contests by not being agreeable. But if that is the price I pay, so be it.

Unless there is a valid reason to do something someone else’s way, I do it my way. I don’t trust other people to make my decisions for me. C’mon, I barely trust myself. I feel like I carry a card, the crappy childhood card, which allows me to do anything I want because of it. I have to make up for lost time. I’m not talking about anything immoral or illegal here. I just march to the beat of my own drum and don’t care what other people think.

There is a woman at the theater that doesn’t like me. How do I know this? At the viewing she came into the theater and gave everyone a hug and told them how much she missed them. That is, everyone except me. She did not look my way or say one word to only me. I had problems with her in the previous show. This was the lady that overacted and upstaged me. She annoyed the crap out of me, but I chalked it up to inexperience on her part and let it go.

Then in the last show, I mentioned that I had a problem with a special needs kid being dumped off back stage who needed more help than she was helping. I felt like this woman passively-aggressively attacked me for saying something about it. She doesn’t like me and honestly the feeling is mutual. I am happy the show is over. I wouldn’t have to deal with her drama anymore. I am getting too old for it. Besides, not spending time with difficult people sure makes me like them more.

A few days later, the woman that I don’t like asked on Facebook about Easter egg hunts in the area on Easter Sunday. My new church was having an Easter egg hunt. I toyed with the idea of inviting her to church. I mean, that would be the Christian thing to do. But on the flip side, I also know that she attends another church and I didn’t want her to start attending my church. I decided not to invite her simply because I do not like her.

Apparently though, according to my son, I probably did her a favor by preventing her from possibly joining a cult. You’re welcome!

No need to worry about me. Good luck though to anyone trying to change me and make me conform into a blind follower. I am not cult material. Just ask my husband.

 

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.

 

 

 

 

 

 

Anxiety

A couple of weeks ago, I told Paul that once the kids leave home I will worry less. With less stress and anxiety, I would stop taking my medication for acid re-flux.

As a child, I lived with a constant stomachache. Sometimes it was a dull ache and sometimes it was a sharp fiery burn. I had a lot of nausea. I had it down to a science how much food I could eat to just feel okay. My parents never took me in and after awhile it became normal to me.

My autistic brother Matt also had stomach issues. He did a lot of gagging with his tourette’s. There were times that he even threw up at the table between the acid re-flux and tourette’s. It was not unusual for him not be able to keep his breakfast down and barely make it to the bathroom in time. There was a period of time that his valve between his stomach and intestines closed and he wasn’t able to keep any food down at all. He was very sick and almost died before the doctors figured out what the problem was and surgically corrected it.

As you can imagine, my stomachaches were ignored. It wasn’t until I was over 40 that I went to the doctor because of it because I was in a lot of pain. I probably had an ulcer. The doctor put me on 1 Prilosec a day and when that didn’t take care of my stomachache, I was put on 2 a day. It’s been a couple of years now.

I’ve always attributed my stomachaches to stress which I believe greatly aggravates it. Although there may be a genetic component to it since multiple family members have similar issues.

Childhood was the most stressful period of my life to date. Not only was my autistic brother violent towards me on a regular basis, he also had some very serious medical concerns as well. My dad was abusive. It was no wonder I had stomachaches.

It wasn’t all that long after I left my childhood home that I had a family of my own. Having 3 little children was stressful. I didn’t get a lot of help from either Paul’s or my family. I had a lot of stomachaches.

Then I helped my husband run a business while having three teenagers. I had a lot of stomachaches.

I am no longer running a business. One of my children has moved out and soon will another. Maybe I wouldn’t worry so much if I wasn’t always stressed out.

Then Paul said something interesting. Alissa, you will always have anxiety. You will just find something else to worry about. I thought of this as I reread my old journals. They were filled with anxieties and worries.

Sometimes I feel so full of anxiety for no apparent reason at all. I feel like something bad is going to happen and for some reason it is my fault. I felt that way a lot as a kid. If I wasn’t hyper-vigilant enough and missed the signs that my brother was going to attack someone, then it was my fault because I didn’t stop it. But the truth is that sometimes no matter what I did or didn’t do, I couldn’t have stopped it. The truth also is that I have lived my whole life with an anxiety disorder.

What makes me think that someday it is just going to go away when it was always there? The smartest thing that I can do is accept the cards I have been given and play them as best as I can.

I can’t relax. I get a lot done.

I worry. I care too much.

I have useless nervous energy. Running burns it off and makes me feel human.

I feel anxiety. I can help others by understanding their struggle.

I try to control things I can’t. I’m not to blame for things outside of my control. I realize that now.

Doing rituals made me feel safe when I wasn’t.

Isn’t overthinking better than not thinking at all?

I have the solution for every what if scenario whirling around my head.

I have to run back home to make sure I turned off the coffee pot. Got a keurig.

I’m not saying that I am no longer anxious. I just learned to live with it.

I have many fears. But I won’t let that stop me because I learned over time how to manage it to my advantage.

I learned to cope. I’m afraid that I wouldn’t be able to function without it. Strange because most people would think that I couldn’t function with it.

 

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.

 

Backstage fright

I’m sorry that I’ve been a bit of a stranger as of late.

This past weekend I was in a theatrical production. Last week we entered into hell week starting with an 8 hour practice the previous Sunday to kick things off. To make life busier, my daughter was home from college last week for spring break. I tried to spend every minute with her that I could. I felt very nostalgic since this will be the last time she will be home for an extended period of time. She decided to get her own place after this semester in her college town several hours away.

The show itself has been going really well. Most of the time it seems like there is more drama backstage than onstage. This time has been no exception. I wasn’t going to say anything, but I did.

Yesterday I got a message from one of the other actresses in the show wanting to iron out a problem with a scene. This message was sent to the leadership of the show. The stage manager was happy that she came forward with the problem and told us to let her know if we had any other problems with the show. Any problems??

So I opened my mouth and I’m not sure if I should have.

There is a girl helping out backstage who I would guess is around 11. She is a very nice girl, but has special needs and functions like someone half her age. Once in awhile she grabs a chair to clear the set, but that is about it. She does not help with costume changes. If anything, she gets in the way. She can be loud and distracting. She wants to play and riles up the young actors who we constantly have to tell to be quiet.

What really is bothersome though is that she is constantly touching people in inappropriate ways. She jumped up onto the chest of a man piggy back style. She hangs on a teen girl and won’t get off when the girl tells her to stop. She is constantly invading the personal space of people she doesn’t know. This has made everyone uncomfortable but no one wants to say anything.

I feel like her parents dumped her off backstage for us to babysit. She needs help more than she is helping. I can tell that her behavior frustrates others. So I said something within a very small group message towards the leadership. Someone said in response to my concerns that I needed to be more compassionate. When she acts inappropriately, we should respond by redirecting her. I said that was not my responsibility. That was the responsibility of a caregiver or parent, not mine. I needed to focus on what I needed to do for the show.

Am I overreacting?

Last week was not the easiest. My mom came over and my daughter Arabella confronted her. My mom will travel hours with us to see Angel’s shows when she is not feeling well, but did not drive 20 minutes to see Arabella’s performances. There was crying and hard feelings. Then my mom told me to have a good performance after she told me that she had a biopsy done and might have cancer. She also said that the caregivers were not taking care of Matt properly in the group home. All of this stressed me out before a big performance.

Then the afternoon of opening night, I got a call from my brother Luke. He stayed at my parents house for a couple of days to attend a conference for work. He had a hard time staying at my parents house. It brought up a lot of painful memories. We talked for over 2 hours. Luke and I struggle with a lot of anxiety and even PSTD symptoms from our childhood. Within the last couple of months, we found solace in talking to each other about things that no one else understands.

I think I am upset about two things with the girl backstage. First, whenever I got a hobby or found something special that I liked my mom always tried to include Matt in on it. I liked roller skating. My mom made sure that I included Matt in on my hobby. One time when we were roller skating, Matt attacked a little girl. He grabbed her by the hair and started kicking her. It was very traumatic for me. I never felt like I could enjoy anything by myself.

The girl at the theater has a sister in the show. I feel angry that the parents want both of their kids involved in the same thing. Is this unreasonable on my part? Probably.

The second thing that bothers me is that the girl is autistic like at times. She does a lot of self-stim behavior and does a lot of inappropriate touching. I feel like I have to keep a close eye on her like I had to with my brother. It is bringing back a lot of dormant feelings.

My brother Matt’s birthday is this week. I will be spending a lot of time with family. Then I will have another weekend of shows. This is stressing me out. A lot of contact with my brother or family, even thinking about it while writing my book, during a stressful time causes a tremendous amount of anxiety in me.

The second thing that I am truly afraid of is that I will have flashbacks of painful memories during the show. I think it might help if I find a quiet area that I can hide out  during the show if possible for my own mental health.

This morning the woman that said I needed to be more compassionate posted a video on Facebook of a kid helping a special needs team mate stating that there needs to be more people like that in the world. I felt like it was a personal attack on me.

I don’t have a problem if a special needs kid wants to help out with the show. But in this case she is not mature enough to handle the responsibility. I simply suggested that a parent or caregiver should be with her to help her respond appropriately. I think that it is cruel to leave a kid floundering in an environment that sets them up for failure, not just for her but also for her sibling. Again, maybe I am overreacting based on my own experiences.

Oh, I hope I break a leg and not lose my mind!