Special needs siblings

The brewer’s wife

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Recently I met someone new under unusual circumstances. We met through our realtor, at a party she was hosting with a stranger at the stranger’s house. Generally this was out of my comfort zone as an introvert. Paul, the extrovert, said that he didn’t care either way if we went. It was rare to have a weekend evening free at the end of summer. Even rarer was that the introvert was all excited to go. I wanted to meet some new people in the neighborhood.

The party had an eclectic variety of home brews that were remarkably good. Paul said that he wanted to thank the brewer for offering up his marvelous beer. We had a long conversation with the brewer and he stated that he loved sharing his beer with friends. I jokingly asked him how we could become friends.

Skip a month ahead…I was planning Paul’s 50th birthday party. I was wondering what to do about drinks. I was already planning on having the food catered in. Then I thought of the brewer. I asked him if he would be willing to share his beer with us for the party. I offered to pay him which apparently was illegal. Whoops! I didn’t know. He said he wouldn’t accept money, but would do it for a friend. So we set up his kegerator at our house with 3 of his home brews.

After the party, we invited the brewer and his wife over for supper and to pick up the kegerator. Now the brewer’s wife is a doctor of psychology. Most of her clients are autistic. She also works with their families.

I had my first one on one conversation with the doctor. I ended up telling her a lot of things that I don’t even tell my closest friends after knowing them for years. I told her about the day on the lake that my brother almost drowned. That day, at age 6, I was left alone to watch my 3 younger brothers swim.  Alissa would certainly yell if there was a problem, but Alissa didn’t. I told her that since I was in grade school I felt like an adult.

I told her that I was homeschooled from 8th grade through 10th grade because my autistic brother was too violent to go to school. I told her that I lived my late middle school and early high school years in great isolation from my peers. I told her how I was a caretaker for my brother. Instead of going out with friends on a Saturday night, I helped shower my autistic brother. I told her that for many years I was a massive bruise from when my brother hit/hurt me. I told her the hardest part was that he never was told that hurting me was wrong.

I told her of my restrictions because those things could set Matt off. I wasn’t allowed to use hair spray, wear nail polish, or perfume. We had to dip our tooth brushes in peroxide and baking soda for awhile. I told her that my dad was abusive. I told her how I sometimes have flashbacks.

She said that lots of times special needs siblings have issues with addiction or depression. She said that the depression rate of special needs siblings is 50% compared to 6% of the regular population. But she said that the state lacks funding to have programs for siblings because they are ‘normal’. I find that very sad.

I told the doctor that I would be willing to speak to parents or siblings about my experiences. I told her if my story could help a couple others who are struggling, it wouldn’t all be in vain.

That evening, they left the kegerator at our house promising to get together soon to pick it up.

The next day I apologized for being so candid. I told her that I don’t usually share personal things with complete strangers about my life (outside of this blog). She told me that she was honored that I shared my story and that for everything I’ve been through it’s surprising that I am a solid person. (She also said she would be sending a bill which I hope she did not mean!!!).

She said that she was planning on finding a way for me to share my story of hope with others who are struggling. I’m not sure if anything will come of it or not.

I’ve always felt like my purpose is to help others…to write about it…to speak about it…

God works in mysterious ways…sometimes he works through beer.

 

Luke’s visit, part 9

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We didn’t spend the whole time talking when Luke came to visit. Although I must say that I didn’t talk a lot. I spent a lot of time listening, transfixed by Luke’s words. It was the first time he spoke about our childhood with any meaning.

I think that through his struggles, he has gained new insight, wisdom, and purpose to his life.

Maybe our suffering wasn’t in vain after all.

Doesn’t a brilliant rainbow first need rain?

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We invited Luke and his family to our new house and out sailing for the first time. Luke’s youngest daughter wanted to jump off the balcony into the swimming pool. Not a good sign for the upcoming teenage years. She also wanted to buy a sailboat, but said that she didn’t have any money. She is so funny that I think the carefree comedian Luke is still living on.

Paul patiently taught the kids all about sailing. I think someday he would make a wonderful grandpa. My dad spent a lot of time ridiculing us for things we didn’t know and called us stupid when we came to him with questions. But as I watched Paul and Luke with the children, I was happy to know that they are both wonderful fathers without ever having had wonderful fathers.

Sometimes our struggles can become a blessing.

 

Luke’s visit, part 8

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Over the past year, both Mark and Luke quit drinking. I was a little worried about Mark a couple summers back. One morning he started drinking at the cabin before most of the family woke up. Luke was always a drinker. He knew everything there was to know about beer. Luke was also the comedian. He’s not funny anymore. It’s strange that I felt some sadness at the loss of his role. He always made us laugh which made going through hard times easier.

Luke was upset that our parents did not seem to want to hear what he had to say to them. He told them that he needed to talk to them for him. It wasn’t about him being emotionally supportive for them anymore. He needed this for him to heal. He quit being the comedian not all that long ago. But making us laugh made us feel better, not him.

Luke stripped himself of all coping mechanisms and dove right into the truth. He is relying on God to get him through this. Me, I like to dip my feet in the water and keep my coping mechanisms nearby. Maybe I’m okay with the lies I tell myself until I am ready to face the truth. What is wrong with that?

Mark played the part of the invisible middle child. He had an important role too. He was the one who advocated for my dad when my mom packed up the car with her stuff and was ready to leave. He kept the family together.

I played the part of the caregiver/counselor. I was always the ultra responsible first born. This has been my role since I can remember. I think it is going to be hard for me once my kids all leave home. I cared for my autistic brother Matt since I was a little kid. I still was his caregiver after my children were born up until he started acting violent towards them. Then I had my own family to care for.

Luke asked my husband how I cope. Paul told him that running helps me cope and it does. I don’t drink to cope. I could never let anything control me. But is that really true? I like to work and keep busy at all times. Perhaps that controls me since I can’t ever seem to relax. But how can working be a bad thing? What if my coping mechanisms aren’t unhealthy? Who can I hurt by having a clean house, etc?

I like to write about my experiences. But on the days when I write about the most difficult times, I feel very depressed. Paul said that although writing seems good for me, maybe I need a counselor. But I stubbornly resist the notion of anyone helping me with anything. I don’t want help. I don’t think I need it right now. I want to work through this on my own.

I will be okay. I am healing. But it is not always a beautiful process.

Luke’s visit, part 7

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Suppose that a little girl whom you were close to died.

In the first scenario, I want you to imagine that the girl died in a tragic accident and was killed unintentionally by one of her friends.

In the second scenario, I want you to imagine that the girl was brutally murdered.

How might you feel in either scenario? Would the loss of someone close be the same regardless of how she died? Could you blame someone if they didn’t intend to hurt another but did? Is it okay to be angry even if it was an accident?

It’s easy to be angry if that feeling was justified. But what if it is not?

Sometimes I feel angry at Matt. It is hard to justify feeling anger towards someone severely mentally ill. I don’t think that he intended to be violent towards us, his siblings. But the end result was the same, he ruined our childhood.

Luke said that when he was younger he told Matt to hit a wasp nest with a stick. Matt got stung.

We were told that feeling angry was bad. Yet we still felt that way.

Sometimes it was hard not to feel angry at our mother for favoring him so.

But isn’t it natural to want to soothe the baby that is always crying?

Luke said that he needed to have boundaries. He told our mom that he didn’t want to hear about Matt unless he asked how Matt was doing. Our lives don’t revolve around Matt anymore. It was hard to break away from that. But we needed to break away from that to heal.

It is okay sometimes to feel angry.

 

 

 

 

Luke’s visit, part 6

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I don’t like it when people touch me, neither does Mark.

Luke has always been an affectionate guy.

Maybe it just boils down to personal preference. We had the same upbringing.

We remember the bite marks on our arms, the scratches, head butts, eye pokes, kicks, punches…that we received from our autistic brother Matt.

My dad seemed afraid to hit or hug me. He would tickle my brothers and I which was miserable because he just wouldn’t stop when we told him to.

Touch was not usually a good thing, but I did like my grandma’s hugs.

My dad was not gentle in any way. He would squeeze my mother in hugs too tight until she would cry out…stop you are hurting me. Her cries would draw in my little brothers. They would jump on my dad and try to get him to let go while he swung at them like pesky mosquitoes. It was all a game.

Now Luke was a mama’s boy, which really seemed to bother my dad. If anyone tattled on Luke, he would get it. Mark and I never got spankings, but Luke always seemed to get in trouble. He hated my dad and did a lot of things to bother him like cutting the cords on his electronics. Mark and I never really did the things that would fuel my dad’s anger.

There are some things I feel bad about. Sometimes my dad would fly off the handle with Luke about minor things that I tattled about. There was also a period of time that Luke looked to me to be a second mother. He clung to me and I pushed him away.

There were times when my dad was a little rough with Luke and Matt. But most of the scars came from Matt. He would out of the blue attack someone. It would bother me that no one told him what he was doing was wrong. In fact, if we tried to defend ourselves or retaliate, we were punished. He couldn’t help it, but we could.

It was always hard to see Matt hurt someone, stranger or friend. Sometimes we could see the signs beforehand that he was was agitated. I always felt guilty that I couldn’t stop it from happening. Sometimes I felt responsible for it. Maybe if I noticed sooner, I could’ve stopped it. Why should I feel responsible for my brother’s actions?

His actions had a direct effect on my life. It was the reason that friends weren’t allowed to come to our house. It was the reason I lost friends. It was the reason for my isolation. Matt was so violent that he wasn’t allowed in school for 3 years. A teacher came to our house for Matt. My mom pulled us all out of school. I spent one year of middle school and two years of high school at home. I only saw my friends a couple times a month.

My cats became my friends. Sometimes Matt would hurt them. If they tried to come in the house, my dad would pick them up by the tail and throw them out. But I always let them sneak in my bedroom window.

There was nothing normal about my childhood. Yet here I am trying to live a normal life.

 

Luke’s visit, part 5

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I don’t understand why he did the things he did. I don’t like to think about it, much less write about it. It makes me feel incredibly sad to tell you all of these things.

We didn’t travel much as kids. The only place we ever went to was the family cabin up north. I can’t even remember one family meal at a restaurant. Matt’s violent and disruptive behaviors made it nearly impossible to be welcomed anywhere.

I didn’t like the weeds in the water at the lake. Oftentimes, we would walk to our neighbor’s cabin nearby to swim. They raked by their dock giving them a sandy beach. They knew my parents and were okay with it, although I never remembered asking and they always glared at us.

There was that one time that my brothers and I thought it would be a great idea to throw the neighbor’s decorative rocks off the end of their dock. They were so angry. We were too little to get them out of the water at the end of the dock, the water was over our heads. My mom didn’t swim.

After that unfortunate incident when my brother almost drowned, we were always watched more closely in the water. It was my dad’s idea for my mom to put me in charge as a 6 year old of my 3 younger brothers in the water. They thought I would holler if something went wrong, but instead I froze when Luke went under.

After that, my mom would sit on the neighbor’s dock in her lawn chair to watch us swim. Sometimes if my mom wasn’t able to be there, she would send my dad. He was never really happy about that.

We didn’t have fun playing in the water with dad. He would grab our ankles while we swam under water and yank us back making us choke, sputter, and gasp water. It was all a game, like tag, you see. He seemed to think it was fun.

He thought it was terribly humorous that I was afraid of weeds. He grabbed my little body and planted my feet far away from the sand into the weeds. The few minutes he forced me to stand there seemed like hours. I was so terrified feeling the slimy weeds and what I imagined slithered underneath. Even to this day, I rarely like my feet to be uncovered.

I cried in terror and when he finally let go, I ran as fast as I could through the weeds to shore. All the while, he called me names and threw mucky weeds, a dead fish, and sticks at me. Then he swam back to our cabin through the weeds. He said that I was such a baby for being afraid.

But I still loved the water. I wanted to learn how to swim really good. My mom gave us basic swim lessons so we didn’t drown but said I couldn’t take the advanced class because they had doctor bills to pay for Matt.

Last summer I swam across the lake up north. I swam right through the weeds even though I was scared. I even competed in a Half Ironman. But I always remained a beginner swimmer.

My brother Luke’s daughters are really good swimmers and are on the swim team. My oldest niece, who is just 10, competed in her first triathlon this year. Luke set up a mock triathlon course for his girls up north. At least I am glad that he is the father that our dad never was. They have been given so many opportunities. They don’t have to grow up being afraid.

 

Luke’s visit, part 2

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I suppose since you have a big house now that you will be hosting Christmas this year.

It wasn’t the first time I heard this comment…

I told Luke that I didn’t really like an aunt and uncle of ours.

Why?

Because of the time that they came over for supper when we were kids.

What about it?

They had the house with the piano. They wanted us to come live with them if mom and dad left us forever. That evening while we were eating, Matt hurt our aunt. It wasn’t unusual for Matt to hurt someone.  It was our aunt who was acting strange. She locked herself in the car crying hysterically. She could not be comforted. I’ve never seen her so upset before or since.

Suppose that our aunt was attacked and Matt triggered her memory of it.

Aunt left and didn’t come back. They said that they didn’t want us to come live with them in their house with the piano anymore.

Who told you that?

Mom. She cried and said that no one cared. She said things would be different if her mom was still living.

How old were you?

I don’t know, maybe 8 or 9.

You were too young, why would she tell you that you were unwanted?

Something strange happened in the course of our conversation. For the first time I was able to see the event through adult eyes.

I was able to let go of the rejection of 30+ years. My aunt has always been kind to me, but I didn’t trust her since that night. Other family members cared. They were busy living their own lives. Some were only a few years older than me. They saw what was happening but didn’t know what to do about it. Some lived far away. The ones that were near did help.

My mom just needed more help than anyone could reasonably provide.

So I became the helper. I became the adult.

I have forgiven my family.

Someday I will forgive my mother too for my lost childhood and for giving me this heavy weight to carry. I think it is time to start unpacking my baggage.

 

Luke’s visit, part 1

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It happened, our meeting, almost 4 months after I sent the impersonal ‘happy birthday’ text to my brother Luke. He replied that he wanted to talk sometime in person, about our childhood, if I was up to it.

It happened the end of last year for him. He wasn’t going to lie to himself anymore. It happened right after our brother Matt was taken off of his anti-psychotic medicine and threatened to kill Luke’s daughter. The memories flooded back with strong emotion.

I understand, I take it in in small doses until I can’t swallow it anymore. But Luke took it in with one massive gulp. He set aside everything that he used to help him cope and embraced the pain.

He told me that he thought no one cared about us. No one had our best interests in heart. We were physically abused by our disabled brother Matt and verbally abused by our dad on a consistent basis. No one once said that they were sorry this happened to us. We were just expected to take it.

I agreed that our dad did not care about us. I did not agree that our mom did not care about us. I said that I thought she did the best that she could under the circumstances. But did she? Or am I just telling myself that to help me cope?? What is wrong with lying to yourself a little to make you feel better?? What is wrong with coping mechanisms if they are healthy and actually help you cope?

My mom always put Matt first over our safety or the safety of our children. Matt was like an idol we were forced to worship. Our wants and needs always took the back burner.

I feel angry sometimes. Luke does too. He said I should feel angry. But I don’t feel angry at my dad although he was a terrible father. I feel angry at my mom although I think she was an amazing mother.

There is an inconsistency there.

Things don’t add up with what I think and how I feel.

What kind of parents have a 6 year old (me) watch my 3 younger brothers swim at the lake even for a few minutes?? That was the day that my youngest brother (Luke), who just turned 2, almost drowned. I have carried the heavy weight of responsibility since then. I was not allowed to be a kid. I had to be an adult.

Luke said he was sorry that all of these traumatic things happened to me. He asked Paul if I was okay. He asked how I cope. Paul told him that I cope by running. He didn’t mention writing or this blog. I’m not ready. I’m not sure if I will ever be ready. But I am ready to start delving into the past again…slowly…

I don’t want Luke to worry about me…I think this time our brother Mark is the one that could be drowning. Maybe if we can reach him, we can help pull him out.

 

The rails

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My husband says that life is sometimes like a railroad track. On our journey, the rails of good and bad happen side by side simultaneously. Life is never all good or all bad. Sometimes the great and the horrible bombard us at the same time. I’ve never felt like that was more true than it is now. I don’t even know what to feel anymore..

Lately, I’ve been in a bit of a funk. My go to feelings these days are anger and a deep sorrow. I thought maybe a weekend up north in isolation would force me to reflect what my problem is. I am not a negative person, but right now the rose tinted glasses makes me want to gag.

What is my problem? Why can’t I have a light and fluffy blog? Is that even what I want? Probably not…

I consider myself a realist. But what happens when reality doesn’t even seem realistic?

The funny thing is that I achieved everything I wanted in life. I’ve worked really hard to accomplish my goals. I’ve turned out better than I even thought I would. That should make me happy, but it only leaves me wanting more. What can I conquer next? I already have a wall full of medals in my dream house.

Some things have really hit me hard…the terminal cancer diagnosis of a close friend…the death of a close friend’s child. I feel like I can’t talk to them anymore about the good or bad. How can I complain about my teen throwing a drinking party at my house when her teen daughter is dead??

There is a certain isolation of not knowing what to say beyond…I’m sorry this has happened to you..Life is unfair..You are in my thoughts and prayers..What happens after you said this a dozen times? What happens when words run out to express your grief for them? Do you go back to talking about every day ordinary life? I don’t know what to say.

The death of Lisa’s daughter stings. It was so unexpected and tragic. This wasn’t my plan for either of my friends. A child shouldn’t die, a healthy person in their 40’s shouldn’t get cancer…Whereas, I have never felt healthier in my life. My body is a lean mass of muscle from running and working out consistently for the last ten years. I still get carded to buy alcohol when some of my classmates are getting asked for their AARP cards.

My children are all healthy and normal. I worried for years that I would have a severely autistic child like my brother. That worry slipped off the horizon many years ago to be replaced by other worries. But they are all normal worries that every parent has..

I have a wonderful husband. I have a great job. I am reaching the end of actively parenting three teenagers.

Yet, I feel this isolation. Change is hard, even if it is good. I love my new house, but I don’t know who my neighbors are. My youngest daughter will be going to a new school and doesn’t have any friends in the area.

I feel estranged from my extended family. I haven’t seen my siblings in months. We rarely talk.

I feel estranged from my church family with all of the controversy lately. My best friend Cindy left the church and we might too. All of my kids were baptized and confirmed there. Must everything change all at once?

My husband, aunt, mother, and son have been on a school trip for the last couple weeks. I haven’t seen them in almost a month. I spent a week in Vegas and when I got back, they left. It almost feels like they are gone from me too. Is this what it is going to feel like if I, in the natural course of life, outlive my husband and mom? This emptiness?

I’ve spent a lot of time alone in reflection this past month. It’s really dark and messy in there. I want to clean things up but I’m afraid of what would happen if I disturb the cobwebs. I have to be really strong to go into the deep, dark ugly places. I just don’t feel really strong right now. It’s not the best time to poke at my demons.

My family will be coming home tonight. Maybe my mood will improve. Maybe I will find my way out of this sorrow. Maybe I will finally accept change, the good along with the bad. I’m on the right track, I just need to keep chugging along..

 

Father’s Day

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Father’s Day…it’s always been a difficult day for me.

I see the posts online of you with your dad smiling and happy. I wonder why my dad never cared about me. I don’t think I have any pictures of us like that, dad.

I just remember you laughing at the TV in some distant room while my autistic brother hit me yet again. You could have held me while I cried. Why didn’t you?

I remember the time that I was afraid of weeds up at the lake. You took my tiny little body and planted my feet in the slimy weeds. You laughed at me when I ran back to shore crying. You threw weeds at me and called me names.

I am not afraid anymore, dad. I push myself so hard. I run myself ragged.

This one day of the year, I wish for just one picture…one memory…of us together smiling and happy. It is so painful to see the things I didn’t have.

What is wrong with me? Why didn’t you love me dad?