I finished my book!!

Last night I finished my book, my life story. It stirred within me many mixed emotions. I felt like I was covered in a blanket of deep sorrow, yet at the same time I felt joy. It’s been a journey of remembering and releasing in words previously unexpressed.

Last night I sent my book to two test readers, a friend who is an author and a friend that is a child psychologist who works specifically with autistic children. I also sent a copy to my therapist. After I receive feedback, I will edit my book again. Then I want to send my book to my husband, my daughter Angel, my son Alex, and my brother Luke. After that, I am going to find a publisher. Then I will share it with you.

Perhaps this will start the healing process, perhaps not.

I figure if I can do some really difficult things (like running a 50k or writing a book revealing my trauma), then I probably can figure out a way to do something almost everyone can do. Relax. Heal. Let go.

I have been working with my therapist on brainspotting. I shared my first session with you and that was a very positive experience. After that session, things took a dark turn. I have been releasing all of the negative garbage I’ve been holding inside. It stinks! I’ve been working hard on trying to express my feelings. It has been painful, yet beneficial. Through this process, my lifelong struggle with insomnia and nightmares has gone away.

For a long time, I understood myself. I know what triggers my depression and anxiety. I understand the attacks of my trauma on my well being. But I’ve never known what to do about it. Visiting a therapist is taking the next step. Self-awareness is important, but it isn’t a catalyst for change.

I’m trying to give up control. It’s not like I had any in the first place. Just like being a clean freak never seems to make the dirt go away. Being a control freak doesn’t give peace and serenity to the voice that cries out for it. Worry is a waste of time. It doesn’t bring me peace.

I am trying to figure out who I really am. For most of my life I lived in survival mode. Now who am I? The person I needed to be to survive? Or who I really am? It’s hard to be myself if I don’t know who I really am. It’s a new time for self-discovery and growth. I want to fully experience my purpose in life.

I started meditating. Maybe I will try yoga. I always burned my anxiety off by hard workouts at the gym. This is how I process my anger. I am going to keep this, but add to it by including relaxation exercises.

I am going to read a Bible verse a day. This will incorporate inspiration for spiritual healing and growth. I want to trust God more. I also want to trust the people that care about me even if it means I might get hurt. I want to cultivate meaningful relationships. I want to cut off unhealthy relationships altogether, and if I can’t then I’ll set healthy boundaries.

I also started visiting a wellness clinic for physical healing of my body. My nervous system took a big hit from the long term stress. I suffered from stomach and GI issues my whole life. I’ve been working on avoiding the foods I am sensitive to and rebuilding my gut for optimal physical health.

If I can train my body for a 50k, I can train my body for growth and healing. My book is done, but I will never stop writing. The story hasn’t ended yet. The best is yet to come.

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!

Fortune cookie wisdom #20

Courage comes through suffering.

This fortune cookie blew away from the rest and was found the same day I found my lost ‘I am courageous’ sock. I only wore the socks once before losing one in Paul’s shirt for a couple weeks.

It seemed like a sign of some sorts. But what does it mean?

What does being courageous even mean? The dictionary defines courageous as not deterred by danger or pain; brave.

I would like to think that I am courageous. In the next couple weeks I am planning on doing courageous things.

This weekend I am running my first 50k. It takes a lot of courage for me to do this and probably will entail a lot of suffering too. There is no guarantee that I will succeed. I am very fearful that I might not be able to achieve the goals I’ve set in place for myself.

Within the next two weeks I will be submitting a 45 minute presentation for a local autism chapter about what it is like to be a sibling of someone with autism. I really need to put myself out there about the most difficult experience in my life. It is going to require a lot of courage. I am finishing my book on what life is really like with a disabled sibling. I’ve had to face my scars and demons.

As an extra test to my bravery, over the holiday weekend a filling fell out. I went to the dentist today to get it fixed. They said I could probably do it without being numbed. I would rather run a marathon with a broken leg. I was horrified and then they said I could get anesthesia just in case. But I decided to brave it despite my fear.

Then this past weekend I spoke to my dad about God. I don’t feel like he has much time left. For some reason he has softened his heart toward me lately. He told me that he loved me for the second time in my life. The first time was on my 18th birthday prompted by my mother. Then this weekend I asked him to come out and sit with us, his family, by the campfire. Surprisingly to everyone, he did.

Before this, I justified to myself that someone else should talk to my dad. My brother Luke sat down with my parents awhile back and aired out all of his grievances. It seemed like a good thing. I thought that he was getting along great with my dad. I felt like Luke is a better Christian than I am so he could carry the weight of talking to our dad. But my eyes were opened to the fact that Luke and my dad do not get along.

My mom is a devout Christian and my dad is a Christian bashing atheist. I bet you can guess how that worked. I believe that the best marriages are of those that have the same religious beliefs. Because, we the children, have to take sides. I feel the need to talk to my dad about God. I most likely wouldn’t have that burden if both my parents were Christians or atheists if I followed their beliefs. It causes a lot of disharmony and stress.

So on the way out of the cabin this weekend I said to my dad that I hope he finds God before God finds him. My dad laughed and said fat chance. I knew that my words probably did no good for him, but it released me. I did everything I could and if it is the last time I see him I will know that I did not leave a coward.

I don’t think that I am more courageous than the average person, but I am trying to be brave when there are demons to slay and fears to conquer.

 

Expectation reflections

It hasn’t been too much of an adjustment having 4 teenagers in the house.

Our foreign exchange students have been very quiet and friendly. When we told others of our plan to have 2 foreign exchange students, they cringed. Most shared horror stories of wild teen exchange students that made every effort to sneak out and party. So far there haven’t been any problems.

It’s probably because they are not comfortable being family yet. There aren’t any fights or talking back. We are all on our best behavior, no belching or farting. My husband has been giving them special treatment. He is buying the foods they like, taking them to places they are interested in going, asking if they are too hot or too cold. It’s hard not to treat them like visitors.

This is going to sound insane, but I felt a twinge of jealousy. It triggered something inside of me that reminded me of my mom’s special treatment of my autistic brother Matt.  Everything in our house revolved around Matt and what he wanted. I honestly wasn’t expecting to feel that way.

Of course, the students paid a lot of money to have a great experience here. I want things to be wonderful for them. Things are going really well. The girls don’t seem to be too homesick. If anything, at times they seem a little bored. But I’m sure that will change once school starts and they make friends.

It’s fun because they get excited about all of the little things, like going to the grocery store. They eat differently than we do. They use their knife and fork to cut things more. They cut up grilled cheese sandwiches instead of just picking them up and plunking them in their soup like I did.

Today Clara made homemade German potato salad for our friend’s Octoberfest party tomorrow. Real German food!

I also didn’t realize how much Hitler and the nazi’s were the butt of American jokes in TV and movie comedies. Awkward! But none of us were alive when any of that happened. If anything, countries that were once at war can be friendly towards each other again.

Hopefully in the next couple weeks the girls will come out of their shell a little. As for right now, I’m really happy that things are going better than I expected.

Brainspotting

I’ve realized a few new things about myself over the past couple days. The things I once thought were normal, or at least normal to me, I am questioning. I think I just got used to some things that are just not right.

There isn’t a day that goes past that I don’t think about the childhood trauma I’ve experienced. I wish I could just get over it or at best think about these things every other day. As a result, I’ve struggled with lifelong anxiety and depression.

But that isn’t all. I constantly experience exhaustion and fatigue. My doctor wanted me to go in for a sleep study when I was in my 20’s. I did and was told that I never went into deep sleep.

I started reading the book The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Dr. Bessel Van Der Kolk. I would highly recommend the book if you have experienced or are interested in trauma in general. One of the chapters talks about EMDR. EMDR is a therapeutic process in which someone focuses on a pointer moving back and forth while thinking of traumatic experiences. It somewhat mimics REM sleep which PTSD sufferers apparently don’t get a lot of. It is supposed to be very effective in healing trauma.

When I was a little girl, my autistic brother was physically violent with me on a daily basis for years. Sometimes while I was trying to sleep at night, he would come in my room and threaten me with violence. As a child, I slept with my door open. You see, I was afraid of the monsters in my closet and the ghosts under my bed that would attack me when my door was closed. I thought like a child. I feared illogical demons instead of credible threats to my safety.

The stress hormones pumped through my veins with a steady beat day and night. My body learned to never relax. I had to be alert for danger at all times. Deep sleep wasn’t safe.

I started paying attention to my sleep patterns lately. They’ve been the same as long as I can remember. I don’t have problems falling asleep, but I can’t seem to stay asleep. I usually awake between 2 and 4 and stay awake for an hour or two. I try not to think because then I might as well get up because I won’t be able to fall back asleep. Sometimes I get up and walk around.

Usually once or twice a week, I have bad dreams. It seems when I am just about ready to go into REM sleep, my body awakens me. Even though the danger is gone, my body is still on high alert.

I can’t remember the last time I slept through the night. I can’t remember the last time I didn’t have a nightmare when I had a dream. When things are really bad, I experience insomnia and intense nightmares together on the same night. These are the nights that I wake up sobbing, can’t go back to sleep, and if I do I have nightmares again. Thankfully it doesn’t happen all that often.

I am exhausted, but can’t relax. My anemia is making things worse. I lack energy and can’t seem to think straight.

My counselor is trained in brainspotting, which is an offshoot of EMDR. Next session I am going to give it a try and see how it works. Maybe I’ll finally be able to get some sleep. Even though a pattern of insomnia and nightmares is normal to me, I don’t think that it is normal. Maybe there is nothing I can do about it, but I’m going to try.

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.

 

 

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.