- I was able to visit with Angel and Dan after not seeing them for a couple weeks.
- Opening the cabin up north for the season.
- Last minute my brother Luke came up north with his daughters. It was the first time I saw them this year. We played games, went for a hike, and sat by the campfire. It was too cold to swim yet.
- One thing that has taken some adjustment, my husband is gone a lot with our seasonal business. I do most of my work out of the house. That being said, I find myself alone a lot for the first time since all the kids moved out. The first night I spent at the cabin by myself. It was different. I was feeling this melancholy nostalgia. I missed my husband, the kids when they were younger, and my dog who went there with us year after year until this year since his passing. I started to feel sorry for myself. Then the next day, my brother came up with his kids and dog. The next door neighbors had kids and a dog. Kids were fighting, the dogs were always trying to get away, not to mention the noise and commotion. It was in that moment I became grateful for the stage of life I’m in. I don’t think I have the energy anymore to be chasing after kids and dogs that get away. I didn’t have to be responsible for anyone and I kind of like it.
- I’m grateful for the time to discover what I like to do. I really like going thrifting and to rummage sales. I did both this past week but no huge finds.
- Angel and Dan checked out some local city wide rummage sales and asked if there was anything I was looking for they could find, and they did! I have been looking for a motorcycle helmet for Alex’s girlfriend. He only has one and he has been taking his off to give to his girlfriend when she rides with him. Angel found a pink motorcycle helmet for Lexi, her favorite color. Her birthday is next month and I have the perfect gift. Win, win, win.
- My mom and autistic brother Matt went up north this weekend too. Matt is more on the severe end of the autism spectrum and is not very socially aware. Two things happened this weekend that are worth mentioning. Matt asked me if Paul was coming up north too. He didn’t ask about my kids. This tells me he somehow knows Paul and I are linked together but that the kids are grown up. I was impressed by his awareness when most of the time he is oblivious to relationships.
- The other thing that happened is this…We were sitting around a campfire. My mom asked my 12 year old niece Gracie to move out of grandma’s chair so she could sit there. A few minutes later my brother Matt wanted the chair, so my mom moved out of the chair to an empty chair so Matt could sit there. I called my mom out on it. My mom said she is just a really good mom to Matt. She always gives him special treatment which I am not keen of. Later, Matt wanted my chair and moved all my stuff off of it while I was tending to the fire. I told him I was sitting there and it was rude of him to take my chair when I got up to do work especially when other chairs were available. But he did it anyway and I was pissed. My mom did nothing. A few minutes later Matt came over and apologized to me. I was floored. I never in a million years thought he was going to do that. I actually thought he was coming over to me to steal the other chair I was sitting on.
- Matt has been involved in a day program for the last several years for autistic children and adults. It’s made a big difference in his life. I know they have been working with him a lot on social skills and how to interact with people. Matt noticed I was up north alone. But the big thing was he noticed I was irritated at him for his behavior and he apologized. My parents didn’t teach him that. My mom always wanted us to give him special treatment like she does without giving him the opportunity to learn what appropriate behavior is. I’m grateful for this program and that even though he is in his 40’s, he is learning how to interact with others in a way that is also healthy for him.
- I’m grateful for warm spring days and cool nights. No need for the heat or the A/C.
siblings of autism
Caring for Matt
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.
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.
Unrest
I don’t want to do this anymore, this whole life thing. I want to hibernate somewhere, hidden away under cover.
I don’t know how I got to this point. I’m just tired of it. I’m just tired.
I couldn’t fall asleep last night. It was after midnight before I silently fell into slumber. This happened twice this week although this type of insomnia rarely happens.
I couldn’t stay asleep last night. I slept restlessly. I awoke several times. At 4 AM I had to go to the bathroom. This is the type of insomnia I call home.
I had one of the most intense nightmares that I had in a long time. I was a little girl. I was brought to an empty house because there was going to be a lot of blood, my blood. I went willingly because I knew I had to be the sacrifice. I was afraid. I was going to be hurt badly, but I would live through it. Before anything happened, the owner of the house came back. She looked like a grown up me. I told her that she needed to leave because she would get killed for being there. She tried to help me, we ran away. She was killed and I hid in the closet terrified knowing I would be next. Now we both were going to die because she tried to save me.
I awoke at 5:30, less than an hour before my alarm was going to go off.
Today is the day that my video is being posted. I didn’t know it until this morning. I hate the video. I want to destroy it. I feel so anxious about it.
Why do I have this need to tell everyone about the things I’ve experienced? I just don’t want to do this anymore. I don’t want to write. I don’t want to blog. I want to disappear off the face of the earth like I never even existed.
I thought of strange things. I remembered the book my mom used to read to me about Toad and Frog. They left the door open and winter came in. They were cold, sad, and lonely. They made soup out of their tears. It was almost as if the hauntingly sad child me came for an unwanted visit. But to cast her away would destroy us both.
I struggled to find the motivation to do everything I needed to do. Some days are like that. I’ve been stirring up my demons. But I was able to make it through. It is hard to do when my body and mind doesn’t let me rest.
Maybe tonight I will sleep.
Unrest.
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!
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.
Extreme empty nest solutions
On Sunday I received a phone call from the foreign exchange student coordinator a couple hours after my daughter moved out.
Sunday was a bittersweet day.
On Sunday, my best friend became a grandma for the first time.
On Sunday, it’s been a year and a day since my close friend lost her daughter in a fiery car crash.
On Sunday, my daughter moved 4 hours away and is not planning on living at home again.
I was feeling down as you can probably imagine.
My oldest daughter moved out, my son is off pet sitting this week, and my youngest daughter is volunteering this week as a camp cook. I’m feeling the empty nest kick in. I realized that I may have a harder time with this whole empty nest thing than I thought.
I’ve been a caregiver since I can remember. I was my autistic brother’s “second mom”. I also helped with my other two younger brothers.
In college, I was a caregiver for an elderly woman with Alzheimer’s and a middle aged man with Paranoid Schizophrenia. I took care of my brother Matt up until after I had several kids of my own. I also took care of my Aunt Grace when she had dementia. I provided day care for several children when my kids were little.
I don’t know what it is like to not take care of someone and the thought is a little scary.
As I was crying and feeling sorry for myself, the phone rang. The foreign exchange program coordinator called and said she had an emergency situation. One of the host parents for a student from Germany ended up getting into a serious motorcycle accident and broke her back. This student was really into music and needed a home.
I was wondering what to do with my daughter’s empty room. So we filled it. Now we will be hosting two foreign exchange students starting next month, Estelle from France and Clara from Germany.
I feel like my life has meaning again. I suppose most people get another pet once they start emptying the nest. Not me, I guess you could say I am rather extreme.
Even though it might be stressful having 3 teenagers in the house again, I am going to enjoy this last year of chaos before I have an empty nest.
By the time next year rolls around, I might actually be okay with only taking care of me.
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.
Outrunning my demons 