Autism

Inoculation

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Today I got inoculated. I like the word inoculation, it sounds so much better than shots, immunizations, or vaccinations. I just don’t like the action.

Since Paul and I are going to Thailand in a few months, we decided to book an appointment with the travel nurse. I only ended up getting 2 shots, Hepatitis A and the flu shot. What happens if you have to sit next to someone for 20 hours on a plane that has the flu? A ruined vacation..

We got a prescription for typhoid pills that we can’t take with alcohol…so no drinking for 10 days. I’m already going to use that as an excuse to not attend a party that I really don’t want to go to.

The Wisconsin immunization registry pretty much pulled up a blank on us. It registered our Tetanus shots from 2012, that’s all.

We both had chicken pox. My mom said I got it really bad in 4th grade. I had chicken pox in my mouth. My eyes swelled shut. I still have a few scars. I think that Paul even had a small pox shot.

I don’t think I had my last MMR shot. There was that couple years that I didn’t attend school. I vaguely remember needing to have a booster and telling my mom I didn’t want it, so I didn’t get it. That is how I remember it, but I’ll admit my memory of my high school years is a bit hazy now.

My mom suspected that the MMR shot caused my brother’s autism back then. Of course, that is not saying much. She questioned every little thing she did and didn’t do back then.

I have always been on the fence about shots myself. This is the first time I’ve ever had a flu shot. I don’t like taking medicine. I wanted a totally natural childbirth. To tell you the truth though, if it was as natural as I wanted it to be, I probably would’ve died. I hate taking medicine unless it is absolutely necessary.

The whole vaccination autism scare came out in full force when my oldest child was born. What was I to do? What if it did cause my brother’s autism?? What information do I trust?? Do I trust the huge pharmaceutical companies?? Do I trust the doctors that are supposedly getting big kickbacks from the drug companies for pushing vaccinations??

What do I do when it affects my family??

To tell you the truth, I really don’t have an opinion whether or not vaccinations cause autism. It didn’t even matter to me. What mattered was that if there was even an iota of a chance, I felt that it would be prudent to be cautious. My children received all of their necessary vaccinations, but on my timeline.

Some people looked down on me for the decision I made.

Did I know that I was hurting my children??

Did you know what it was like living day to day with a violently autistic brother?? Did you see how this tormented our family?? No, because I never bothered to tell you…

It was the late 90’s and early 2000’s…we didn’t know. We still don’t know. I didn’t want anything happening to my children. I didn’t want them to get autism. I didn’t want them to get measles.

I think that I made the best decision with the information I had available to me. I am still hesitant to trust other people when they try to tell me what is best for my children.

All these thoughts whirled through my head as I was nervously waiting to be inoculated…

 

Journal 5, part 2

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5/2/1991

I’m only going to eat one meal a day or else I will be sick. When I was younger this worked all of the time until I felt better..

It is true that sometimes the needs of the ‘normal’ kids get swept under the rug when there is a special needs child in the house.

I know now that I have been a lifelong sufferer of GERD. I didn’t know this as a child. All I knew was that I had stomachaches all of the time. When it was really bad sometimes eating made me feel sick. I felt like I had a fire in my chest. Eventually the acid crept into my throat, gave me frequent canker sores in my mouth, and wore down the enamel on my teeth as a child. My parents threatened to take me to the doctor if I didn’t eat, but they never did.

My brother Matt also has GERD which was made worse by his gagging from Tourette’s. He frequently threw up his breakfasts. There was a time that the valve completely closed between his stomach and intestines. He couldn’t keep down any food and had to have the valve surgically opened again. In the meantime, he dipped below 90 lbs and he almost died.

Whose needs were more important??

Not only did Matt suffer from GERD, he also has autism. He engaged in a lot of self-stimulating repetitive behaviors such as rocking and flapping his hands together. At one time he had to wear a helmet on his head because when he became agitated he would hit his head with his fist. He was hypersensitive to touch. He would scream when he had to have his teeth brushed. He had to be sedated to go to the dentist for cleanings. He would only tolerate having 1/4 of his teeth cleaned at a time and eventually his teeth rotted. He has difficulty communicating and understanding emotions.

He suffers from Tourette’s. He would gag when eating and constantly make sticky saliva sounds with his mouth. His body would twitch and he repeatedly blinked his eyes.

He suffers from schizophrenia. He hears voices that tell him to hurt little girls. Sometimes the voices terrified him. He had nightmares. He would talk to the voices and laugh at the evil things they would tell him to do.

He is intellectually impaired. He cannot read, write, or do simple math.

He has issues with anxiety.

Matt made anything that my brothers and I struggled with minor in comparison.

There was a 3 year period when Matt was not allowed to go to school because of his violence. After that time period, he had very limited exposure to the outside world up until he was placed on an anti-psychotic medicine that eliminated the voices and the violence towards self and others.

My mother did not want my brother institutionalized in a place for the violently mentally ill so she pulled him out of most situations where he could hurt others. That did not stop him from being violent towards me at home. He grabbed a knife and threatened to cut my eyes out. He punched, scratched, kicked, bit, and pulled my hair on a regular basis. Who protected me?? Who reported his violence against me? No one.

I want to say that I handled it like a trooper, but I did not.

I withdrew into myself. I became very depressed. Although childhood goes by fast, it seems to take forever when you are being abused. I wanted out. I cried myself to sleep at night. I woke up crying in the morning after being awoken by nightmares.

I held my body tight like I was always bracing for impact. I cowered like a dog that was beat too much. My shoulders were held tightly up to my ears. I suffered from insomnia. I fell asleep easily but was typically awake from 2 to 4 AM. In the middle of the night, I suffered from muscle pains. I had to wrap pillows and blankets around my legs. I think my muscles were finally trying to relax in the middle of the night and it hurt.

I suffered from anxiety and worry. I was angry. I developed structure, rituals, and routines to feel like I had some control over my environment. For awhile, I was a compulsive hand washer. I washed my hands so often that they cracked and bled.

With everything going on at home, I couldn’t concentrate at school. My grades were horrible. I was put on a high dose of ADD medicine. It helped me focus, but made my skin crawl. I scratched my skin until it bled, especially on my scalp. I scratched until I pulled out scabs with big clumps of hair.

I was exhausted most of the time.

I was a mess.

That was a long time ago.

I survived.

I am strong now.

I am healing.

I feel ready to fight my demons.

 

Journal 5, part 1

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12-10-1990

Tonight is my choir concert. For awhile my mom wasn’t going to go because Matt was reacting. But she is going to go.

Events were always difficult for my family. My mom always wanted Matt to be included in all of the family activities. We never really wanted him to attend our special days. We were afraid that if he hurt someone that would mar the day forever in our memory. Plus we wanted some time when we could be the focus.

How would we feel if a special day was ruined by Matt attacking someone? It would make for an unforgettable choir concert, graduation, or wedding day.

My parents typically took turns attending events if Matt was unable to go. My dad would often times stay home with Matt because he hated social events.

But if Matt was ‘reacting’ bad enough, my mom would stay behind. She didn’t trust anyone else to take care of Matt. If Matt hurt someone, he could sometimes be hurt in the process of restraining him.

For example, if Matt was at the roller rink and attacked a small girl…what do you think her father would do? My mother said that no one could love Matt like she did.

Usually there were early warning signs of reacting that we became hyper vigilant for.. His ears would turn red, his fists and teeth would clench, and his pupils would constrict giving him wild eyes. Sometimes these reactions would last for a short time and sometimes for several days. Sometimes it would happen unexpectedly and sometimes we just knew..

The longest it usually lasted was 2 days until it slowly faded away. For 2 days, Matt would scream and be agitated in general. He would often hurt himself or those around him. He would keep our younger brothers, that he shared a room with, awake at night by rocking his body side to side in his bed violently. During the day, he would run in place flapping his hands together sometimes violently enough to make his chin bleed after his hands rubbed against it repetitively.

He had to be watched constantly because sometimes he would run away. Or he would do deviant things like overflow the sinks. Most of the time he muttered to himself. He would laugh after hurting someone or doing something wrong.

After the reaction was over, Matt would sleep all day and all night.

My mom went to great lengths to try to explain Matt’s strange behavior by saying that he was reacting, or allergic to things.

Matt attacked the stranger in the roller rink because the music was too loud.

Matt attacked the girl because she was wearing perfume. The perfume triggered it. We were no longer allowed to wear or have anything with a fragrance in it. No hair spray, no nail polish, unscented soaps…we even had to dip our toothbrushes in peroxide and baking soda to brush them. I found this to be very restrictive when most girls my age used a bottle of hairspray a week.

Sometimes it was auto exhaust. My mom no longer allowed the cars to be parked in the garage. They had to be parked at the bottom of the driveway. If the wind was blowing in a certain direction, we had to shut all of the windows. My mom would panic if we had to follow another vehicle closely on the road, the exhaust could seep in and set Matt off.

Maybe it was gluten, dairy, and artificial colors. My mom started buying Matt organic food. She went to great lengths to make separate meals for Matt that no one was allowed to eat.

Maybe it was the wood stove. That furnace was removed.

Maybe it was the formaldehyde in the curtains. They were removed and old blankets were put up.

I could probably list at least 50 or more things that at one time my mom thought were triggers. We had to painstakingly follow rituals to try to stop the triggers from eliciting a response in Matt, but it never worked.

My mom took Matt to almost every doctor in the state and to several doctors in other states. She had faith that he could be healed from this affliction. As a child, I believed that he could be healed too. We hung on to every hope that he would be completely healed.

My mom took Matt to physicians, homeopathic healers, allergists, and even a lady that read auras. But nothing worked.

I fear that what I am telling you makes my mother sound like she was completely crazy. But I want to assure you that my mother was the sanest person in the house. In her natural state she is an easy going…go with the flow kind of person…She is very compassionate, sensitive, and loving…But with Matt, my mother was fierce and determined to do anything she needed to do to protect him…to feel like she had an iota of control over something that no one had any control over… and to seek answers while holding on to this irrational dream that some day she would wake up and he would be normal.

Quieting the voices again

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Last week I shared some really personal stuff about my childhood. What I haven’t told you was that every time I read, write, or think about my past I experience the negative emotions that go along with it. Maybe it is a part of the whole healing process, I don’t know.

I was feeling angry at my mom. This is a real struggle for me because a) she is getting up in age and probably doesn’t have a lot of time left, b) I feel like she was the best parent she could be, and c) she probably was as much of a victim in this whole mess as I was. It is not fair to be angry with her now about things that happened a long time ago.

I should be angry with my dad. He was a) never there for me, b) emotionally abusive, and c) a crappy parent. But I am not angry with my dad.

To add fuel to the fire, the previous weekend when I spoke to my mom she said that the family was going for one last impromptu trip up north. My whole family was going up to celebrate my niece’s birthday and I wasn’t told about it until the day of.

My mom cared about me, but she always cared about Matt more. What I am angry about is that Matt hurt me all of the time and she never did anything. She never told him that his behavior was wrong. She comforted him after he hurt me. She told me that I was in the wrong for feeling angry and wanting to retaliate. Would it have changed anything to tell him what he did was wrong? Probably not, but it would’ve made me feel better.

Did she say she was sorry when Matt attacked my friends? I lost all of my childhood friends because Matt hurt them. I was put in a position where I had to choose between my family and my friends.

When Matt was too violent to go to school, my mom pulled all of us out of school. I was Matt’s caregiver up until my second child was born. I went to college close to home. As a teenager, instead of screwing around with my friends, I was in charge of showering my brother.

When I needed my mom the most, I felt like she wasn’t there…If I dwell on it, my anger boils. I felt rather despondent all weekend. My husband thought I was angry with him because I didn’t feel like talking.

I decided to call my mom over the weekend. I asked her how the birthday party went. She told me that she dropped off the cake and gifts and went back home. She spent half of the car ride home crying. Apparently my brother Luke was not ready to have Matt around his children but that was not communicated. Luke said some harsh words to my mom which was upsetting to his daughter and everyone around.

A couple of months back, Matt was taken off of his anti-psychotic meds. He started hallucinating again and became obsessed with my niece. He talked about killing her. He is back on his medication and hasn’t hallucinated in over a month. But Luke is not ready.

I understand because Matt attacked my daughter Angel at her birthday party. He was obsessed about hurting her too. I’m sure that my brother was thinking that he didn’t want his daughter to get hurt at her birthday party either.

Matt is an adult and our daughters are little girls or were at one time. After Matt hurt Angel I had to cut ties with my family for awhile. At the time, Matt was still living at home with my parents. Matt has always been fixated on hurting girls. Never boys.

My mom pressured me to have Matt get together with the family after that happened. Not long after the incident, I became pregnant with my second daughter. I found out the sex of my baby but never told anyone because it was too painful to tell my family that we wouldn’t be together for a long time.

It took years before I allowed my daughters to be around my brother for more than just a passing glance through the window. Luke is planning on reintroducing Matt to his daughters at my house next month for Thanksgiving. Matt never hurt my nieces. He seems to be doing better. He no longer mutters to himself or laughs at what the voices are saying. The voices are quiet again. Maybe we can move past this. He will have to stay on that medication for the rest of his life.

Delving into the past and the recent events have brought up a mixture of emotions, mainly anger on my part.

I will share some old journal entries with you this week (some of them are funny). Then I will have to put it aside for awhile. I really have a hard time over the holidays because it stirs up all of these family issues. For my mental health, I have to know when to set it aside for awhile.

 

Just a mirage..

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There was a time when I was really thirsty…I allowed a mirage to deceive me into thinking my thirst would be satiated.

The blind date didn’t start well. Mac came to my house to pick me up with another couple. Once we got on the road, I noticed that they were drinking. They were nervous when a cop passed by and stopped at the nearest gas station long enough to drop off their empties.

It was the early 1990’s…I couldn’t call for a ride home..we were planning on going to a bowling alley, but it was closed. We drove around aimlessly until the driver was almost out of gas. When he went in to pay for gas, his girlfriend went through his wallet. She found the number of another girl and freaked out. She got behind the wheel and pulled recklessly out into traffic. She pulled over on a side road and tried to smash the windows with her purse. Then she ran off into the night. We spent the rest of the night trying to find her…It was awful and I told Mac that I didn’t think there would be a second date.

But Mac pursued me relentlessly. He was charming and it was flattering at first. He made me feel like I couldn’t live without him. He was going to rescue me from my troubled home. It wasn’t long before we moved in together. I knew that my family wouldn’t approve.

Things went well at first, although Mac was into gambling. There were nights we went out that he just had to stop at the casino. He said he would be a few minutes as he left me in the car taking the keys with him. It was cold sitting there what seemed like forever in the winter. Security came to the car a few times asking if I was okay..Really, it will be just a few more minutes..

One night Mac went to the casino most of the night, but had to be to work by 7:30 AM. I left early that morning for school, then I went to work. When I got back home it was 7:30 PM. Mac was still sleeping. He thought it was morning, but he missed a whole day of work. Apparently, it was my fault.

It started slowly at first…a shove, a push..Then he started to say mean things…words that even my daddy didn’t say to me. I threatened to call the police. He told me that he would tell them that I stole money from him. He gave me his work checks to cash. I didn’t place the call. It wasn’t that bad anyway…just a little bruise.

He was threatened that I was going to college. He thought that I would leave him so he tried to sabotage me in any way he could. He told me that my papers were stupid. He cut down my ideas. He even deleted a paper that I wrote right before I had to turn it in to class. Thankfully, I always wrote out a rough draft on paper first.

Things got really bad. Mac grabbed me by the neck and threw me against the wall. I spent a lot of time hiding in the closet crying. It reminded me of growing up. There were times that I was kicked, punched, scratched, bit, or hurt by my brother Matt every day for a long period of time. I started having what seemed like flashbacks. I sat in the closet with my arms around my legs terrified.

I wasn’t allowed to feel angry about what happened to me growing up. Matt couldn’t help it. I was lucky because I was normal. I couldn’t retaliate. This is how I became numb to all feelings. This is when it began.

I told myself with every punch and bruise that it was making me stronger, like I was lifting weights. That’s how I convinced myself as a child that it was good for me. It was my mantra that helped me survive.

I didn’t want violence in my life anymore. This was no oasis in the desert. I had to leave Mac.

Mac read my journals. He tore out pages from them and threatened to send them to my family if I left him. Most of my relatives were very traditional minded, all law and no love. Anything less than perfection was not tolerated. There was no doubt in my mind that I would be disowned by my family. I had already lied to them about ‘shacking up’ with Mac. I was screwed.

He also used my journals to blackmail me in other ways. I bought new tires for his car after he wasted his paycheck at the casino. I had to leave.

One winter day while Mac was at work, I packed my things and left. But Mac didn’t leave me. I would wake up in the morning to flowers left under the windshield wiper of my car with notes begging to take him back. He would come to my house while I slept.

A few months later, I moved in with a friend a block away from Mac. He started hanging out with my roommate. She fell for his charm. He got back into my life again and we became friends. One night he invited me to a party with our old neighbors. I remembered the fun times we had.

When Mac walked away for a few minutes, an old neighbor came up to me and said…I know what he did to you…Leave and don’t come back..

I left.

Several months later, I received a package in the mail. Mac returned all of my scandalous journal pages.

It was finally over.

The sign

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A couple of weeks back the doubting Thomas in me asked for a sign…and God delivered..

The story really starts a few days after my doubting post. Paul flew out of a small town airport after visiting with our daughter Angel. He had two connecting flights from there to get to his destination. Each layover was an hour long. He almost missed his second flight. The third flight was considerably delayed due to bad weather from a hurricane.

Paul was in much thought and prayer about this trip. He was going to a business meeting that would require making a decision that he was unsure about…one that could have a big impact on our future. After the third flight was delayed, Paul sat down at the airport bar and struck a conversation with the man sitting next to him. The man started talking about recently being faced with the same decision that Paul was contemplating. Unbeknownst to the stranger, he was an answer to prayer.

Paul did not think that the meeting with the stranger in the airport was a coincidence. He decided to take the fork in the road. I really can’t go into the details at this point…but I can say that having an answer has been freeing…a burden lifted.

The following day, I spoke with my mom on the phone. She told me that my brother Luke wanted to step up as the future guardian of my brother Matt. I instantly felt free. A lifetime of being my brother’s keeper…gone. The chains of being my brother’s lifelong caregiver…broken. The weight of a heavy burden…lifted.

I only have 3 1/2 years of parenting left. Then I only have to be responsible for me.

I feel like a caged bird that has been set free. It’s not that I will leave my cage, but that I can. I will no longer be trapped. For the first time I feel like I can fly unfettered. I never thought that this would be possible.

I kept thinking over the past few weeks that if God can take care of the birds, why can’t He take care of me??

Maybe I am asking too much, but please give me a sign…I’m worried that I have to do this whole life thing alone..

In church on Sunday, a duet sang His Eye is on the Sparrow…The lyrics of the hymn echoed through my mind…I sing because I’m happy, I sing because I’m free, His eye is on the sparrow and I know He watches me..

But I still didn’t get the message until I turned to the last few pages of the bulletin. There was a picture of a bird with a message that said something like…listen and you will hear God speaking..

Matthew 6:26-27 If I just remember this, I feel better.

I finally saw the sign…God does care about me. I might not know where He is leading, but I know that I won’t be traveling alone.

 

 

One step at a time…

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When I first met my future husband, I had a jar full of pills on my dresser.

It contained the remnants of unused anti-depressants…Zoloft…Prozac the pill that made me crazy…Anafranil the pill that made me sleep more than I was awake…Paxil, Pemelor…the list goes on…Dexedrine I couldn’t focus at school…Lithium…I remember getting my blood drawn. Weight gain, weight loss, a pill that I needed to eat extra salt…I had round red pills, small white pills, and capsules…even at the highest doses, none of them helped.

Apparently a pill couldn’t cure a crappy childhood.

Paul wanted me to throw the jar out.

I said a lot of negative self talk out loud. I am so stupid. I am so dumb. I am a klutz. I am unlovable. I echoed the words that my daddy said to me. Paul said for every negative thing I said about myself, I had to say 3 nice things about myself. I broke that habit with his help.

I had a tendency to self-destruct. I gravitated towards pain and denied myself joy. I was a harsh taskmaster. I was angry. I was depressed. I am still like that but I express it in healthier ways…like running.

I saw therapists. To be honest, some of them were a joke. How would you feel if you didn’t have an autistic, schizophrenic brother that liked to hurt you? Geez, I wouldn’t know…What would you do if you had a magic wand?…Is that a realistic therapy goal? Maybe I could get a fairy godmother too…Oh, don’t forget the frog that turns into a prince. With me, reality has always been the best approach.

I had one therapist that was really great. She made me talk about feelings..What feelings? I don’t have feelings. I feel nothing…not happiness nor sorrow. I am completely numb. When the memories and feelings came back I was completely devastated by the mess I found.

I went to college with the intentions of becoming a therapist. I wanted to fix my family. I wanted to help others like me. I am 43 years old and have not found one single person in this world that grew up with an autistic/schizophrenic violent brother to help by my experiences.

One day I got rid of the jar of pills on my dresser. My brother asked what I was on because I seemed normal. I was on my own…No more therapy, no more pills…just the love of a person that cared enough to listen.

I slowly started the healing process of recovering from a difficult childhood. It has made me a stronger person. I am no longer outrunning my demons…I am facing them…slowly at my pace…one step at a time…

Since those first few unsteady steps, I must’ve ran a million miles.

 

Confirmed complications

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In a few weeks, my youngest daughter will be confirmed. So far there are so few people attending that I might not have to clean my house.

My oldest daughter has to work late the night before confirmation. There is no way that she can switch with someone. She felt bad because she had the dates wrong on her calendar and told her sister she was coming home. Angel said that she was willing to get up at 4 AM and drive the 8 hour round trip just to attend the ceremony. I told her not to.

I called my brother Luke last night and his family is not coming either.

This past summer my brother Luke got a big promotion. He was thrown a huge party, but I didn’t attend. He mentioned bitterly after my apologies for not attending that he was upset his wife’s siblings attended, but his own siblings did not. I told him again that I was sorry. Paul and I had our 20th anniversary trip planned out before I even heard of his party.

Growing up, we were never encouraged to support our siblings endeavors. Luke didn’t attend my college graduation or party because he was too hungover. Granted, he was a teenager then and I am in my 40’s now. I am happy that he has a successful career. I felt bad that I couldn’t be there, but I wasn’t going to cancel our vow renewal anniversary trip. I guess he is mad at me now..

My dad and my brother Mark only attend social events that they are required to. You will never hear my brother Mark’s childhood story. It is locked away in some deep dark place to be buried with him.

Mark gave up drinking. He said that it made him feel better not to. He has stomach issues like me and half of the family. He was the one that started drinking the previous summer while we were up north at 6 in the morning. He said he gave up drinking on January 1st for health reasons, but it sounds like a New Year’s resolution to me. I am happy that he is feeling better.

I rarely saw my brothers at all this summer.

My brother Matt tore up the whole family this year. After he was taken off of his anti-psychotic meds because of liver strain, he started hallucinating again. He became fixated on Luke’s young daughters and expressed a desire to kill them. He was put back on the medicine, but it might take months for it to be fully effective again.

Before he was originally put on the medicine, he was fixated on hurting my daughter Angel. We had to limit their contact with each other, but he did hurt Angel on her 4th birthday. This was before he was placed in a group home. This started a time of deep isolation from my family. They spent weekends up north together, but I wasn’t included.

Matt has always fixated on hurting little girls. I should know, I was the first little girl. That was before we heard about the voices. This summer my mom had fear again. She was afraid to take Matt to his appointments because there might be little girls there. Little girls that he could hurt and she wouldn’t be able to stop him.

My brothers and I helped my mom take Matt to appointments when we were younger. We had to be hyper vigilant to signs that Matt might be getting agitated. My mom would try to make appointments when there weren’t little girls coming in to the doctor. But that didn’t always work. At times adults would bring little girls with them to appointments. Sometimes we had to sneak in through the back door. My brothers became quite effective in restraining Matt. It usually took a couple of people to pry him off.

This summer Matt was on lock down. He couldn’t go on trips to the library or to the bowling alley with his group. My mom became fearful of doctor appointments again. It was stressful up north with young kids playing next door. Matt talked to the voices this summer. He laughed like a mad man to whatever the voices said. He is starting to get better…but will he be able to be around the children for the holidays??

So, at this time, only my mom is attending Arabella’s confirmation besides our immediate family.

Paul’s mom and step-dad are Arabella’s sponsors. Paul’s mother passed away this year from cancer. Her husband Darryl moved on with life. Darryl recently told Paul all about his love life with his new girlfriend. It makes us very uncomfortable. We are not ready for someone new to take his mother’s place. We don’t want to meet a new lady at the confirmation. I’m not sure if Darryl will be there.

Whoever would’ve thought a confirmation could be so complicated??

What is the meaning?

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Are you there God? Just show me a sign. Let me know that I am not walking alone. Sometimes I feel alone.

I am angry dealing with a rebellious 17 year old. Maybe someday I can look back and laugh at this. Maybe it will be like the time when his buddies and him mooned his classmates at recess in grade school. I laugh about that now.

Even though I am angry, I still feel love. He is a good person. He said that most teenagers would jump at the chance to have a cabin to party at with free alcohol. Perhaps that is true. He didn’t partake of the property destruction.

Last week my son texted me about saving a bird. He saw it as he was leaving for school flapping on the ground. The bird hit the garage door and was bleeding from the head. I tried to save it, but it was too far gone.

Doesn’t God care for the sparrows? Doesn’t God care even more about me?

I have been thinking a lot the past few days. I don’t think I feel angry about my current situation as much as I do about the past. It brings me back to a time that I didn’t feel like God was there for me, for my mom..

My mom is right up there at the top of God’s most faithful servants list. I, perhaps, am at the top of the doubting Thomas list.

You see, my mother’s life has been difficult since her first premature breath in a foreign country. I can almost understand if God is not there for me…but my mother??

She had to deal with 4 teenagers at a time…two that were severely depressed. One that was into alcohol and drugs…and my brother Matt, the Helen Keller of mental illness…anxiety, autism, schizophrenia, and tourette’s. He was often violent. My dad was also depressed. When he wasn’t depressed, he was angry and cruel…

God, were you with my mother the many nights she cried alone??

Does what I went through have purpose?? What is the meaning? Did I even help one person live another day besides myself??

Are you there God? Can you show me a sign?

 

Autism heard

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Matt was a normal baby, very bright actually. He knew the alphabet and was saying simple words at age 2. But that all went away.

Even his birth was not a normal event. After crushing back labor, he entered the world with broken bones.

One day the words went away. He stopped talking. He started having nightmares. He screamed instead of sleeping. But I was too young to remember that.

How could such a brilliant mind be stunted? As an adult he can neither read nor write. He cannot solve simple math problems.

For a long time, Matt did not even talk. But the strangest thing happened. He started talking again. But not in the same way that you or I do. He got his pronouns all mixed up. Matt eat..he never referred to himself as I. He also has a speech impediment that makes him difficult to understand by those who did not know him well. This seemed to frustrate him in his younger years and he hit his head with his fist.

The things he said didn’t always make sense to us.

For awhile he repeated the same song in a monotone voice…hands on the table won’t come off, now the hands are stuck on the beard. He would scream if he saw a man with a beard.

But a man with a beard never hurt him.

He was also terrified of tires. He would kick the tires and throw stones at them if people showed up in their cars.

He also heard sticky noises. He would smack his lips to mock the sounds he was hearing. It was a disconcerting sound like chewing with your mouth open times ten.

He also heard the sound of girls laughing at him. Back in the day, he was sent out to recess with the rest of the kids. The older girls teased and mocked his bizarre behaviors. I was there and saw it but was helpless to do anything about it. I didn’t fit in with the other kids because they made fun of my brother. He was an easy target. It made me angry all of the time. But I wasn’t allowed to feel anger. Anger was wrong and it upset Matt. Angry emotions set Matt off and he would hurt himself, my mother, or me. So I withdrew to survive.

Recently Matt was taken off of his anti-psychotic medication due to liver strain. He started to hear voices again. This time the voices were telling him to hurt my niece. But not just hurt her, to kill her.

Fifteen years ago, Matt hurt my daughter. The voices told him to do it. He started to obsess about her, so we limited their contact at the time. It was on her 4th birthday. We didn’t think it would happen…

Afterwards, he muttered to the voices for hours and couldn’t be brought out of it. He didn’t respond when spoken to.

For many years after that my brother was not allowed around my children or any children. He became home bound and isolated from the general population. If it happened again, he was going to be locked up with the violently mentally ill. He started a new medication and silently gently the violent whispers faded away.

My mother asked lately if he was misdiagnosed. Is he schizophrenic too? Or is this some unusual symptom of autism? The doctor said that at this point it really doesn’t matter since it will be treated the same way.

Matt was violent before he hurt my daughter. If we were vigilant enough, we could see it coming on. His jaw would clench, his face contorted, his pupils constricted, and his ears turned bright red.

Sometimes after he hurt someone he seemed very upset about what he had done. Other times he would laugh. It was such an evil laugh that a few asked and we wondered if it was possible that he was demon possessed.

He struggled to differentiate between reality and what the voices were telling him. The voices are very frightening to him.

I think he always had auditory hallucinations, but couldn’t verbalize it to us.

It made me wonder…what if other violent autistic nonverbal people also hear the same voices but can’t tell anyone? How terrifying that would be. What if they think they are being hurt or are hearing a voice that tells them to hurt someone or themselves?

If I would go back to school to get a Master’s degree or PhD in Psychology, I think I would devote time researching this. I couldn’t find a lot of information online. But what is there to find if those who suffer cannot communicate?

This has been incredibly hard for my mom. She can’t mention my niece’s name around Matt. He obsesses about her. He is angry if he thinks that she likes the same things he does and talks about hurting her.

It is hard for us all. I love my brother and don’t want to see him suffer. I love my niece and I don’t want her to be hurt.

How long will it take for the medicine to work?