- After doing an iPhone update my phone started glitching out. I thought I was going to have to break the bank and buy a new phone. My daughter suggested turning the phone off and on again. I’m grateful it worked and I don’t have to get a new phone for awhile.
- My mom ended up in the hospital this past week. I’m grateful that routine bloodwork for her physical caught a problem before it became a bigger problem. Because of her health concerns, I took my brother back to his group home for the first time since the pandemic. I’m grateful because that means a little less stress for her.
- My daughter didn’t come home for Father’s Day weekend because she was concerned she may have been exposed to coronavirus. Thankfully the COVID test came back negative and she was able to come home this past weekend.
- We took a ride around town in my daughter’s new Jeep with the top and doors off. It was a lot of fun. I’m grateful that I can still have fun even during hard times.
- We had a bon voyage party for our foreign exchange student Estelle who will be going back home the end of this week. All she wanted to do was light off fireworks for her birthday but we couldn’t because of the weird tropical storm that hit Wisconsin. We were supposed to get severe weather on the night of her going away party but just got a few sprinkles so we were able to light off fireworks.
- I’m grateful that I was able to spend time with all my kids this weekend laughing and talking.
- I’m grateful we were able to take a young lady with cancer sailing. She had two wishes, one was to go horseback riding and the other was to sail. It was a perfect night to make her wish come true. She was so happy that it felt nice to do something to make someone else happy.
- I’m grateful for a long conversation with my brother Luke. It really is nice to have someone to relate to.
- I’m grateful that our new business is doing well.
It’s been at least a decade since I took care of my autistic brother Matt in my house. A few things precipitated this change. Initially I stopped providing weekend respite care for my parents after Matt was violent towards my daughter.
There may have been a few times I took care of Matt and my mom took my kids although it wasn’t much of a break. It was difficult raising 3 little kids without having much for family support. My mom had to take care of Matt. My brothers didn’t live close. My mother-in-law could barely handle raising the one child she did have, my husband. I found myself bitter towards parents that could dump their kids off and get away every now and then.
But the biggest change for me as a care provider for Matt was when my parents placed him in a group home. I was no longer needed to help out, until now that is. Matt’s group home was closed since the virus started. It is now open but if he goes back this month, he is not allowed to leave.
Originally my mom wanted me to stop by the house every night to make sure Matt was okay under my dad’s care. I told her it would be easier for me to have him stay with us for almost a week which is longer than he has ever stayed with me before.
I told my kids that Matt was coming to stay here for awhile but they wouldn’t have to adjust their lives around him. If it didn’t work out, Matt could always go home and I could check in on him everyday. One of my kids called me selfish for saying that our world didn’t revolve around Matt.
As a child my whole life revolved around Matt and if I had to tiptoe around him in my own house it wasn’t going to work. No other family member is willing to step up and offer to take him in for almost a week. That should count for something.
The whole experience went better than I expected. Although Matt is no longer violent, caring for him is not easy. He is on a special diet. I needed to make separate meals for him. At certain times of the day his medicine needs to be ground up and put into applesauce. He doesn’t have table manners. He farts and belches at the table. Sometimes he gags on his food especially if you bring a napkin near him.
He has poor hygiene. He is a messy eater and soils his clothes. He often wears his clothes inside out and/or backwards. He doesn’t change his clothes often. He refused to shower which he would need assistance doing. He wouldn’t ask for help after using the bathroom and made a mess on the floor. I had to floss his teeth and big clumps of food came out of his mouth which made me feel nauseous. He made a total mess out of the bathroom he used. In all honesty, it did trigger feelings of hopelessness in me.
Not only are my parents hoarders, but they rarely cleaned the house. Cleaning up after Matt would be like fixing up a house before you knew a tornado was going to hit. I didn’t even feel completely relieved that everything was clean after I cleaned once he left. I can’t always clean up messy feelings inside by cleaning the filth in my house.
I felt guilty when I wasn’t spending every minute taking care of him. Most of the time he would sit on the couch and stare off into space when I wasn’t interacting with him. I felt the ingrained need to please him because his life is so sad.
I found his favorite movies and put them on for him to watch. We went on walks together. I talked to him about the shared good memories from childhood. I talked about places and loved ones that long since passed. I talked to him about the things only a sibling would know. All these things helped ease his separation anxiety from my mom. I think things went really well, as good as I could have hoped for.
As a sibling, I worry a lot about what life will be like for Matt when my mom is no longer here. My parents are getting old. It is comforting to know that maybe he will adjust with my help. Matt will probably never be easy to care for but I think he would do well with me. I was impressed with how well he adapted to his new environment. It felt good to be able to help my mom out. In some ways it was nostalgic and strangely comforting for me as well.
Yesterday I had my first Craniosacral therapy appointment after the start of the pandemic followed by an appointment with my therapist. Afterwards, I felt great. I finally feel like I am making some headway with my healing process.
Fixing myself has been hard because I’ve been broken so long I got used to the cracks. It’s been an adjustment. It’s created some problems I’ve never guessed it would. Now that I am healing I’m starting to notice the brokenness around me more. For example, I find myself more critical of my husband because I feel like I am in a healthier place than he is. Before he was always the healthier one.
Since I started seeing the therapist a year and a half ago, I’ve gone through several crises. My therapist wants me to focus on letting go of the original trauma that I hold locked inside my body and mind. She thinks that once I do this all of the other stressors will flow through. I liken it to Tetris. If you clear out the bottom rows before everything starts piling up, it will be easier for everything else to flow through.
My therapist told me that with three teenagers in my house life realistically won’t be stress free anytime soon. What she says is true. Teenagers are stressful even when they aren’t trying to be. For example, our foreign exchange student Estelle wants to join in the protesting. I told her that she couldn’t because I couldn’t guarantee that it would be peaceful. I am in charge of someone else’s child and I want to feel reasonably sure that the activities she is involved in are safe.
Then Estelle said she wanted to run a mile every hour for 24 hours to raise money instead of protesting. Her idea was that she was going to run alone on country roads by herself day and night. She was rather upset when I said no to that idea too. Then she asked if she could run laps around the house at night and I told her it would be perfectly fine.
I think Estelle will be frightened running around the house at night. I took my brother Matt for a walk today and we saw 4 deer. We saw the cutest baby fawn. My autistic brother Matt is staying with us for a couple days. My mom is going up north to visit with her sisters for a couple days. I’m proud of her for not living her life in fear.
This means that I will be helping Matt with daily living. I will be fixing his meals separate from ours since he is on a special diet. I will have to help him shower, clean up himself after going to the bathroom, floss his teeth, and give him his medication. He is quite used to getting his way so I want to see how he will handle being with my family for several days. Someday when my parents are gone I will probably take him in once a month to stay with me if this works out.
If it doesn’t work out, I will take him back home to stay with my dad. I will just run over every day to check on him. My husband thinks it’s funny that my mom trusts me more than my dad to take care of my brother. But he doesn’t understand that is always the way it was even when I was a child myself. I hope this experience is not triggering. But I am mother henning right now which isn’t entirely unsatisfying since it is the last thing my teenagers want.
I am in a good place right now and hopefully I can remain here for awhile.
What is the purpose of struggling?
I’ve felt sick like this many times before. There were times in my childhood where I was in so much pain that I didn’t eat much for several days. I was deemed a picky eater. My parents yelled at me, at times forced me to eat until I threw up, and threatened to take me to the doctor. I really wish they did. Maybe I wouldn’t be in the predicament that I’m in now.
Maybe if I was an only child things would be different. My brother had special needs so mine were ignored. It was selfish of me to take care of myself. I mean, look at my brother.
I can’t blame my parents for everything. I once told a doctor about the things I was experiencing and she told me it was all in my head. Maybe it was all in my head. Maybe it still is. I have that fear. Maybe I will go in for the colonoscopy and they will find nothing wrong with me. But if it is in my head, you better lock me up because I can’t live this way much longer.
At its greatest intensity, the stomach cramps feel like I am in labor. That being said, I didn’t really get a lot of sleep last night. I was in too much pain.
What does this mean for my life going forward? I’m thinking about giving up running. I am not well. My running really took a downhill (or uphill) turn last year. But I did finish a 50k. I achieved everything I wanted to. Oh my gosh, will my life come down to walking and yoga? Shoot me now!
I have to think this physical struggle with my health has some purpose. I have to think my childhood trauma had some purpose too. Why is purpose so meaningful to me? Without it, what is the point?
My husband has been very supportive. I want to thank him for giving me the best years of my life. I know we annoy each other and fight sometimes, but I can always count on him. I guess that is as close as I can get to trusting someone in this life.
I have been struggling because I want to write about what happened last summer with my husband. But I don’t want to hurt him because he is a good person. He did give me the green light, but I would choose him over being transparent with you any day if I felt it’s what I needed to do.
The whole purpose of having a personal blog is sharing my story. The ups and downs and the bumps along the way. Maybe I can help someone else in this journey. Or maybe it just makes me feel better.
My story is the only thing that cannot be taken away from me. Unless I end up with dementia, of course, which I am convinced will be my demise. But until then I am going to keep writing.
This week my autistic brother Matt celebrated his birthday. He was rather upset he was not able to celebrate his birthday with family at the bowling alley like he has done every year for over a decade now.
His program he attends for autistic adults and children was also shut down. The group home he lives in closed its doors. They don’t have enough staff to cover the hours at the house where its residents were previously gone.
Matt was sent home disrupting his day to day routine just like the rest of us. This was rather disturbing for a population of people who don’t understand why the change is happening. But as they say ignorance is bliss. He is happy to be at home because he likes it there. He adjusted really fast to having my mom dote on him.
Matt wasn’t upset the day the police officers showed up at my parent’s house to talk to my dad. But that was the day the rest of our lives changed forever. You see, the police came on a Friday. That was the day Matt was scheduled to come home for the weekend and all was well for him.
Matt isn’t worried about the corona virus. He isn’t trying to stop touching his face. He is not worried that our parents who are in their 70’s might die. He just worries about whether his food will show up on the table when he is hungry just like a small child or household pet. He doesn’t have the responsibility of a family. He doesn’t even have to take care of himself.
In all honesty, sometimes I wish for that ignorance. Dementia doesn’t sound all that bad to me because who wouldn’t want to forget all of the bad things that happened to them. Maybe sometimes I just want someone to take care of me.
I wish I lived in a world where there weren’t so many things to worry about. I envy Matt’s ability to remain calm and worry free in times of great chaos and unpredictability.
There is something attractive about having a child like faith and sense of wonder in times of struggle. I want to be like a carefree child who dances and plays. I want my only worry to be about whether or not someone feeds me having the security that they will.
Yet I have been given the gift of reason. With this gift comes a great burden. Difficult decisions need to be made. It’s hard to break free from the stress and struggles that awareness brings.
I don’t want to be like Matt but sometimes I envy him.
It’s amazing how gullible we were as children believing the things we were told.
How could anyone believe that some fat guy in a red suit could get skinny and simultaneously go down everyone’s chimney with a bag full of presents that end up under a tree the next morning perfectly wrapped? Or that a fairy is going to sneak into your room at night to take your teeth once they fall out? Or that a bunny is going to leave a hidden basket of chocolates? But we do all believe it if that’s what we were told.
Then what about the other things we were told?
I was told that God loves me. If I prayed hard enough, he was going to send us the right doctor that would heal my violent autistic brother. Mile after mile, state after state, we trudged hoping we would find the right doctor.
I was also told my brother was violent because of the foods he ate. Or it was the east wind that blew auto fumes in through the windows of our house. Or it was the lady that was wearing too much perfume. The music was too loud. Just fill in the blank…
I was also told I was stupid, not good at anything, and that I needed to be perfect to be loved.
Why wouldn’t I believe what I was told as a child?
I’ve been cleaning out my closet and found that almost everything I’ve been told and believed as a child was not true. There is no Santa Claus. There is no tooth fairy. There is no Easter bunny.
I am not stupid. I am good at some things. I still fight the drive to be perfect. Thankfully, as an adult, I no longer believe the negative things I was told about myself as a child. It probably took a bit longer to realize that than a child who was told positive things.
But take it one step further, as an adult pursuing healing I am questioning everything I ever believed.
Do my parents love me? Is there a God out there that loves me? I want to think so, but God never healed my brother. I no longer believe God will heal him. But if I had real faith shouldn’t I believe it is possible?
I don’t believe reactions to the foods he ate or his environment caused him to be violent. He was just violent. There was no rhyme or reason. There wasn’t a way to control the unpredictable chaos in my house.
It took me longer to dismiss the beliefs of magical thinking and false hope. But isn’t false hope still hope? Didn’t even false hope help us cope?
Then is God real? Does he really love me? Our pastor spoke of God’s love being like that of a father taking his child in his arms and kissing him on the forehead. What is that like? Neither Paul or I knew. We’ve never been kissed by our fathers. Is that just more proof that a father’s love, God’s love, is meant for others, not me? Are some chosen and some not?
I still have the childhood belief that God loves me. But I’ve also built this big wall around myself that prevents his love from shining through. I can no longer accept this belief as truth, but I cannot dismiss it either as a lie. Some strange almost miraculous things happened in my life that I can only attribute to God. Yet sometimes I feel God answered my prayers with silence.
I no longer believe that parents always love their children just because they are parents. Yesterday while I was running an elderly man started to talk to me. I removed my earbuds and asked him what he said. He said I was pretty fast and pretty too. In just one sentence, a stranger said words nicer to me than my dad ever said. Sometimes the kindness of strangers hurts. Over the past 45 years, I’ve accomplished some amazing things. How hard would it be to say you are proud of me? Does a stranger have to take your place? Why would I think you care?
I want my world to be neat tidy black and white. I feel safer there. I want to be all in or all out. I seek the truth and find myself with more questions than answers.
I hate the grey areas. It causes me so much inner turmoil. I want to pick and choose what I believe. But I want that decision to be made realistically. I want to toss out the things that aren’t true. I want to fully embrace truth, not just what I want to believe is true. I hate this feeling of being in limbo. Not knowing. Not being able to distinguish truth from non-truth.
Can I even trust my own thoughts? Is truth absolute? Or can truth be different for other people, yet truth? Can some of it be truth and non-truth at the same time? Does God show me love by the blessings and good in my life? Conversely, is the opposite true too? Is God punishing me for the bad that has happened? Or does God take bad things and make them good? Why do bad things happen to good people? Why isn’t life always fair?
Aaaarrggghhh!! Here’s to overthinking!
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.
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.
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!
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!