Autism’s sibling, journal 2, part 3

My mom said that Matt was a smart baby. He was speaking and knew the alphabet. Until he turned 2, that is. Then he quit talking altogether. Instead he screamed. He slept fitfully and had nightmares. For many early childhood years, Matt was nonverbal. Then something strange happened, he started talking.

Previous to the home bound years, my brothers and I attended the same grade school. I remember Matt being in the special ed room that was shared with the library. He spent a lot of time in the naughty box between the two rooms. He kicked and screamed in this box while the kids laughed when we went in for library. He also went out with us at recess. Some of the older girls mocked his bizarre movements and laughed at him. It made me very angry, but they were older and there was nothing I could do about it.

One day Matt told my mom that he didn’t like school. He said that the teacher was mean. He told us that she put him face down on the floor and sat on top of him. He said it was hard to breathe. The teacher also put him under her desk, then sat down squishing and trapping him inside. My mom asked me if this could possibly be true. By the time he could tell us what had happened, the teacher had already quit. The turnover was high and I am sure my brother didn’t help with that.

Matt was very hard to handle. He was so violent in the school setting that he had to be homeschooled for several years right around the time of puberty. We stayed at home 3 years, then Matt went back to school with me. My mom sent my youngest two brothers to two different schools. Some of the teachers at school gave my family a hard time for my autistic brother. They looked down upon us. Some of the kids weren’t much better. Like we wanted this? Or caused this?

When I came back to school my junior year, I was the first person in the school district to return to high school after homeschooling. They did not know what to do with me. They would not accept my transcripts from the accredited correspondence school. Some kids teased me by asking if I took off from school to have a baby.

After awhile Luke ended up going to high school with Matt. They graduated together. Mark graduated from a different school entirely. Matt took the short bus to school everyday. There was always a boy that would terrorize Matt on the bus. Sometimes he would get off of the bus with Matt and threaten to kill him. Mom was a little worried last summer that he would make good on his threat once he made parole for his violent criminal offenses.

After I graduated from high school, I came back to be Matt’s teacher’s aide. My best friend Shelly was his aide at school until she pressed criminal charges against Matt for assault when he pulled her hair. Matt was escorted out of the school in handcuffs. That was the end of Shelly’s employment and our friendship. The charges against Matt were dropped after his competency eval.

Then I was employed as Matt’s teacher’s aide for a short period of time. In the classroom, Matt had his own separate cubicle. Every time that I would try to get him to read or write he would grind his teeth and hit his head. Or sometimes he would hit me. He never did learn to read, write, or do basic math.

 

A storm is brewing

I feel the edginess right before the storm hits. The peacefulness and calm from my vacation is leaving slowly like a summertime tan. I feel the wind surround the emptiness inside of me, trying to find a void to fill with cold icy snow. The warmth and sunshine are gone now. Sorrow, darkness, and anger encapsulates me. I cry out to God, but He doesn’t seem to hear my prayers. I feel the tug of emotions trying to drown me in a river of despair. I am alone. I want to be alone. I don’t want to talk. I really don’t want to do anything.

It has been a hard start of the year. I miss my neighbor and friend that passed away a couple of weeks ago. Every time I look at her house, I think that she is still there. She will pull her car out of the driveway and wave at me. We were supposed to do something together next week. But guess what? I can’t go. I looked over the old messages that she sent me. My heart tells me that she is still alive. She just can’t come outside. My brain tells me to stop being such a fool. Stop pretending that things are fine.

Last summer my best friend moved to Florida. I had the opportunity to spend time with her while we were there on vacation. I didn’t realize how much I missed talking to her and seeing her. I miss her. I don’t feel like talking to anyone else. In 4 months, my oldest daughter will be leaving the house. I am excited for her to start the adult chapter in her life, but I am at such a loss. I started crying while she performed her solo and ensemble song for me. It bothered me that she sold her junior prom dress. It just seems so final.

Then yesterday we found out that my mother-in-law has stage 4 terminal lung cancer. They are giving her around 15 months to live. Wait a minute, I am not ready to deal with the loss of our parents yet. I have been having a hard time with this since I saw her last week. I have been feeling sad and angry. With all of the people that were praying for her and my friend that passed away, why didn’t God heal them? I don’t have any control. Why should I expect miracles? I feel helpless. Who can avoid death? It has given Paul time to say goodbye to his only parent. That has been good for him to spend time with her.

This morning my son got suspended from school. He got in a fight with someone in the hallway. It has been no secret that my son has been struggling with school for the last couple of months. He has been begging us to switch schools for a couple months now. Apparently a boy called him a faggot on facebook back in December and has been bullying him with some other kids. My son got in his face today. I suppose that it shouldn’t surprise me that the day after my son finds out that his grandma is dying that he confronts this other boy. Words were exchanged between my son and this boy. They were pushing and shoving each other in the hallway. Then I received a call from the school that my son was suspended for 3 days. He was trying to provoke the other kid that was picking on him. Maybe this is a good thing. Maybe we can finally resolve this issue head on.

We are expecting a snow storm today. We should be getting somewhere around 8 inches of snow with blowing winds. It just started to snow.

Wrestling with the school

My son Alex used to be involved in almost every sport offered in the area, but not anymore. He started wrestling when he was in kindergarten. He was competitive, aggressive, and not afraid to get hurt. To be completely honest with you, I loved being a wrestling mom. I even loved getting up early on a Saturday morning to sit for hours in a loud stinky gym for those few minutes of anxious excitement. Most of the moms didn’t like the sport very much because they were afraid that their children would end up hurt. Most of the kids would leave the meets bumped and bruised and at almost every tournament someone would leave the gym on a stretcher.

The sport required a high tolerance of boredom and anxiety. I have seen almost everything over the 8 years that I was a wrestling mom. I have seen kids puking into garbage cans and heading back to the mat. Or more common, kids with bloody noses. Little kids running off crying after losing a match. Siblings would sit bored for hours playing their video games. Babies cried. Parents would coach from the sidelines losing their voices like they spent the night at a bar. I have seen kids worry over a couple of extra ounces when they were trying to make weight sucking on Jolly Ranchers and spitting into water bottles. I never liked that part. I have seen parents escorted out of the building for fighting with refs over calls. Some kids would win, others would lose. Pictures at the podium. Pins for your hat. Then we would pack it all up and head back home until the next weekend.

Alex was a B+ wrestler. When he was in 6th grade, he tried to make it to state. Only the first and second place in the weight bracket would make it to state. If I remember right, there were 8 kids in the weight bracket and Alex took third. However, another district had only one child in the weight bracket so they called Alex up to state. For the next two weeks before state, Alex wrestled twice as much and twice as hard. On the drive to state, Alex fell asleep and woke up with a kink in his neck. He pinched a nerve or pulled a muscle. We tried everything we could think of but Alex could not hold his head upright without extreme pain. We watched his teammates wrestle while Alex had to forfeit every game. We were so angry. He worked so hard. It was such a fluke thing that he made it to state and then he couldn’t even wrestle. So we resolved to do everything possible to help get Alex back to state the following year.

Alex went to summer wrestling camps and we signed him up for very intense wrestling training 2 months before the wrestling season started. This involved an extra expense and 2 hours of driving every time he went. He was very motivated and worked hard. He became an A- wrestler. In school, he was second in his weight class under an A wrestler. With all of the extra training, he could beat the A wrestler 1 out of 3 times. This is where things went incredibly wrong for him. He took on the alpha. This is a boy whose dad was a wrestler that graduated from that same school.  He was friends with a lot of other boys whose dads were wrestlers that graduated from the small town school. He got a lot of the other kids to turn against my son. A couple other kids were getting bullied as well. Some of the boys were being pushed around and had their wrestling shoes thrown in the toilet.  We talked to the coach, but he didn’t do anything.  One day my husband couldn’t take it anymore. He took Alex with him to confront the boys that were bullying him and to talk to their parents. Things got better for awhile.

Then a few weeks before trying to make state, my son came down with the flu. He missed a week of school and when he came back he didn’t wrestle as good. He still tried hard but then hurt his neck again in the same place as before. He spent a week in a lot of pain. He never made it back to state and quit wrestling altogether. Even though we tried to help him become a better wrestler, in hindsight I am not sure it was worth it. Being better jostled the system that was in place, the hierarchy. Since then my son has been ostracized from the jock group, he quit all sports, his grades dropped, and he has a negative attitude about school. He hangs out with other kids that aren’t accepted. Kids that have been known to steal things, do drugs, and run away from home.

My son begs us to take him to another school which has been tempting since he has two really good friends that stay out of trouble in the neighboring school district.  But would that teach him that he can run away from his problems? That he doesn’t need to change negative things about himself in order to get along with people better? Or would it give him a better attitude about learning and opportunities to grow socially and academically?

We have a lot to think about before the next school year.

Snow tires

In our school district, we have a late bus that drops kids off at various locations after after school activities. The late bus has been a good experience, well except for that one time. What can I say? Snow tires!

When my son was in middle school, he took the late bus to the drop off spot after wrestling practice. One dark, cold, winter Friday night I went to pick him up and had a little adventure. I attempted to make a Y turn and slid on the ice into a snow bank. So here I was with the back end of my car hanging out sideways on the road. My headlights were buried in the snow and I was afraid that oncoming cars would not be able to see me. Yeah, right about that time I had the image in my mind of getting hit by the bus. I called my husband in freak out panic mode. He was in the middle of making supper and couldn’t get there right away. 

Right after I called home two men, that were strangers to me and each other, showed up and pushed my car out of the snow bank. I really appreciated their kindness. Immediately after that, my son showed up on the late bus. He got in the car and exclaimed that he forgot his homework and wrestling gear on the bus. Big problem because the wrestling meet was the next morning. So here I am trying to flag down a school bus in the dark. The first stop I tried to send my son to get his stuff but the driver didn’t see him and left. So here I am driving along side of the bus waving and honking trying not to hit kids wandering around in the dark. Finally my son got his things off the bus. 

In the meantime, my husband set aside supper to help get me out of the snow bank. Except, I was no longer there. He was getting really worried that perhaps by snow bank I meant ditch. Or something really bad happened, like the bus driving around with my car in its front grill. I tried calling him in the process, but he already left. Thankfully, we all made it home safely that night. This winter I will be sure to have good snow tires.  

Judged

I always thought that I was a really good judge of character. Don’t we all? I have heard people admit that they are selfish, lazy, unorganized, vain, but I don’t recall anyone ever saying to me that they are a bad judge of character. Why is that?  Do we want to see the best (or worst) in people despite contrary evidence? I have been struggling with this concept lately. I think most people are embarrassed to admit that they were wrong about someone’s character when their hearts were broken or money was stolen.

I met Jake a couple of years back when he still was a boy. The first time I saw him, he was walking his dog by our house. At the time, I thought maybe he would be a good friend for my son. One day I just happened to be looking out the window when Jake walked by. I just let my dog out and was looking towards the road when I saw Jake’s dog drag him over the meet my dog. In the process, Jake got clotheslined on our mailbox. The dog further dragged him into the ditch. Jake laid wounded on the grass with blood coming out of his neck. I freaked out. I sent my oldest daughter out to get him while I panicked. Eventually I bandaged up some of his wounds and gave him a warm washcloth to put on his scraped and bloody neck. I tracked down his muddy mutt and loaded them into my car to give them a ride home. Welcome to the neighborhood!

A few days later, Jake’s mom sent me a note thanking me for taking care of her son. I still have it which is remarkable because I throw everything out. Over the years, Jake and my son became very good friends. I always liked Jake. He was courteous, quiet, happy, friendly, and kind. He always thanked me when I gave him a ride to school. He was the kind of kid that I wanted my son to hang out with.

Then this summer, things changed. Jake grew into a troubled teen. He was no longer happy. He stopped thanking me for rides. He went to the gas station and stole a pack of cigarettes. His parents made him return them and apologize to the owners. He was grounded for over a month from everything. Then one cool rainy night, he ran away which I blogged about previously. He vanished for almost 48 hours, then went back to school like none of it ever happened. He was present, but not quite there.

A few days after Jake went back to school, his mom texted me with concern. She said that a teacher asked the students to draw a picture of what they were doing for the weekend. Jake drew a picture of himself alone in the corner of his room with his knees folded and his head down in despair.

Then a few weeks later, a note came home from school stating that a student talked about bringing a gun to school. Apparently, a boy had created a hit list with 6 names on it and stated that he was going to bring 7 bullets to school. It was Jake. Jake said that he didn’t mean it, but he was sent away for a couple of weeks for treatment.

Last week I saw Jake walking his dog when I went on a long run. I asked him how he was doing. He smiled and replied that he was doing good. I just have to wonder if his smile was sinister or sincere. I always liked Jake and thought he was a good person. I still want to believe that despite all of the contrary evidence. How could I be so wrong?? In my mind, he is still the sweet and caring boy that I first met years ago. Not the troubled teen that he has become. I have been having a really hard time with this. I feel unsettled, I want to trust him again but can’t. I feel thankful that the troubles with my teens are trivial in comparison. I worry about his family. I pray that Jake can find the friendly and happy boy he once was.

Modern parenting

I remember growing up in the 1980’s. As teenagers, our parents thought we were the worst of all generations before us. They did not understand our music, rock ‘n roll and hair bands. Talking about hair, they did not like the way we dressed. Our hair was too poofy our makeup too wild. We spent countless hours at the mall trying to be material girls. We wasted gobs of time trying to get to the next level in Pong, Space Invaders, and Frogger on our Atari’s. We traded in our records for a large boom box with a tape deck. We dubbed tapes off of other friends tapes off of other friends tapes instead of listening to what our parents listened to on the record player or radio in the living room. Kids were rebellious, times were changing, and parenthood was hard.

As a parent of teenagers, I look back and wish times were a little simpler. We have less control and no guidelines. How much computer time should we allow our teens to have? How do we enforce that? How do we implement parental controls when we need our teens to help set them up? How do we monitor what they are doing when they know more about computers than us? I think that this is probably one of the biggest generation technology parenting gaps that has ever been and probably will ever be. At least our children will know what to do with their children because they grew up with the internet. From experience they will know from their childhood all the things that we don’t know now.

How do we know what to do? How much computer time is too much? My teens now do their homework on their computers. Taking away their computers is like taking away their pencils and paper. Is it good for them to spend all the time that they can on computers so they are prepared to use them in future careers? It is extremely hard to be hypervigelent with our teens use of the Internet without sitting next to them the whole time they are on it. This also is hard when they are at the stage in life where they want to be independent more than anything. If we have no reason not to trust them should we treat them like they are untrustworthy??

I remember as a young child finding my dad’s girlie magazines and showing them to my friends. They were in our house. We don’t have that option of keeping it out of our house if we don’t want it there anymore. My oldest daughter was exposed to porn in middle school when our previous pastor’s daughter showed it to her on a computer in our own house. Who would have thought?

What about cell phones? Back in my day, we had to talk on a phone tethered by a cord on the wall. There was no privacy. Now teens can talk anywhere with complete privacy about anything they want. If they wanted to send or receive naked pictures of someone, it is a click away. Who would ever know?

Now as far as music goes, the options are limitless there as well. If I wanted to buy a parental advisory CD as a teen I would have to go to the music store and show them my id. Once again, anything can be downloaded or listened to and I wouldn’t even know. How do you become proactive in monitoring that?

What about school shootings and violence? Back in my time there were a few kids that would call in bomb threats when they wanted the day off. I assume that doesn’t happen all that much anymore with caller id. Instead there are school shootings. Do you know how scary it is to send your child off to school after something like that happens?? Yesterday I received a letter from the principal of my children’s high school stating that there was an incident where a student was talking about bringing a gun to school. The authorities were called into the school to investigate. So, I sit here and worry. Worry about the things I can’t control. I wonder if I am doing a good job as a parent. Is anyone really? I don’t know what the hell I am doing parenting the modern teen. Does anyone? We are dealing with issues that our experienced parents wouldn’t even be able to give us advice about. 

On the flip side, it is a great time to be a parent. We have webmd for every bump, scratch, and sniffle. There are online support groups for any parenting issue. There is countless free advice for practically any parenting problem from getting stains out of clothes, potty training, to extra math tutorials at the tips of our fingers. Maybe it would have helped my parents raise us when they had 4 teens in the house at the same time. My brother could’ve gotten diagnosed with autism earlier, maybe would have had early intervention therapy. My mom could’ve joined online support groups and wouldn’t have had to parent an autistic child totally alone finding out what worked through trial and error.  

Ah, these are the best of times and worst of times for parenting. I am doing the best I can. 

The dark unfeeling cardboard box

When I was a young child, I never really liked school a lot. Sure, there were some bad teachers, some good, and some everywhere in between. But it really wasn’t that. It was never that. It had more to do with Matt, my autistic brother. Being less than 2 years younger than me, I could never get away. The school really didn’t know what to do with Matt. He was the first autistic child to come through the school district. When he couldn’t function in a regular classroom, they cut the library in half to make it a special ed room.

For a long period of time, Matt was nonverbal. Oh, he did scream and cry but he did not talk. He was uncontrollable. His teacher at school set up a naughty box for him between the library and special ed room. Almost every time we had library, my brother was in the box screaming and flailing around. The box seemed high at the time because I was so little. When my class lined up to look at books, the kids could peer into the box. Most of the time the kids laughed and I hated them. I put my feelings in a big box that seemed even bigger than the box that Matt was in. Many times I would rather be trapped in that empty box devoid of feelings, life, and light than to face the pain of the real world.

For a long time I floated around in my own little world. How could I make friends with my classmates? How could I like the kids that called my brother a retard? I went deeper and deeper into that box. I stopped eating. I didn’t talk to anyone. I started failing my classes. The only thing that touched my heart was music. I had this focal point that I would always stare at so I didn’t start crying in that class. I was so lost. My mom was very concerned, she had the school counselor talk to me. She was a wonderful person who tried to help me make friends and talk about feelings.

My mom wasn’t in much better shape herself. Mother daughter outings with the extended family ended up with my mom sharing with the family how much she hated autism and all of the things that Matt did or didn’t do. The family just wanted relaxation and fun. They were uncomfortable that my mom was crying and needed their support. They stared at me all the time. When I was alone with family, they peppered me with questions about if my mom was ok and how was Matt. I didn’t feel like anyone cared about me. Most of the time they were just trying to help without being very helpful.

One day Matt started talking again. He told stories of how his teacher in the grade school was abusive towards him. She shoved him under her desk and sat down at her desk squeezing him in there. He also said that the teacher would place him face down on the floor and sit on him making it hard to breathe. My mom asked me if this could be true, she was very upset.

After everything that happened, my mom tried to keep my younger brothers sheltered from going to school with Matt. She sent my brothers to parochial schools and schools that were out of our district. I wonder if that had anything to do with me not responding well to being in school with Matt. Did I save my younger brothers some pain? I hope so.

A sailor’s return to health and hearth

Today is the day that my husband comes home. A week ago he went off sailing into the sunset with a bunch of other sailors. I am glad that he sailed away. Since we work together and are practically inseparable, it was good to appreciate him in his absence. With the stresses of running a business and raising teenagers, we both do our part in keeping the antacid pharmaceutical companies afloat. Some time putting stress on the back burner helps keep the burning acid fires at bay. 

I am sure that the men were happy to get away from their wives nagging them about how much they eat, drink, or smoke. I do my fair share of nagging, I know. Paul is 6 years older than me, women live longer than men, plus longevity is on my side not necessarily his. So I figure that statistically speaking I should outlive him by 13 to 20+ years. We have been together 20 years this month, almost half my life. And I almost lost him once about 10 years ago. 

Ten years ago… I was staying at home taking care of our 3 little kids while Paul was building his own business. It was a one man show back then. Paul started having a lot of back pain. Our dr gave him cortisone shots and muscle relaxers, but the pain didn’t go away. After further testing, a cyst was discovered in his kidney area. No problem the dr said and plans were made to have an ultrasound to aid in the removal of the cyst. When we got to the appointment something was wrong. The dr didn’t like what he saw. He feared that the cyst was cancerous and trying to remove it by a simple procedure would tear it open and spread the cancer all over his body. Special tools needed ordering and surgery would be required. 

This all happened right before thanksgiving. Life went on. We had the whole family over for thanksgiving as planned. Paul got up early and cooked the meal in a tremendous amount of pain. We prayed and we worried. Cancer, the thought of forever losing my husband. The procedure required a major surgery that involved removal of a couple ribs, a week in the hospital, and a long recooperation time. Plus it was going to be expensive. Like most small business owners, we had a very high deductible and only went to the dr for catastrophic events. 

I remember the day of surgery quite well. It happened in the afternoon. The pastor and another church member prayed for my husband. Then I was left sitting in the waiting area for hours alone. I brought a book with me that I must have read the same sentence over and over. I looked down at the lonely desolate streets and watched the street lamps come on. I thought of facing life alone as I watched the wind blow the remainders of the late fall leaves swirling away. The dr finally came out and said that everything was ok. Paul had a cyst the size of a football on his adrenal gland, but it was most likely not cancerous. After I saw that he was safe in his room, I headed home. The weather took a turn for the worst. There was black ice everywhere. A car slid off the overpass and lay overturned in the ditch. There were many accidents on the way home that night. But we lived through that day!

Paul lost a lot of weight. He was thin and sickly which says a lot since he was always a big man. He needed help. I had to take him to work. He needed help getting up and down the stairs to his office. One step at a time. This was before Internet allowed him to work remotely. So much for recovery time. It was before I knew how to do the work myself. But he dragged his sore, heavily medicated body in. It was painful to watch. At the time, he was also taking a 4 credit master’s degree accounting class. He spent the weekends, when he should have been resting, working on his accounting spreadsheets and then finals. This is why I love this man, he preserveres. I admire his strength. 

Go ahead, take a week off. 

Back to school 2

Ok, here is the blog you have been waiting for…. As a follow up to an earlier blog, I tallied up the cost to send my 3 kids back to school. I also realized the benefit of sending my kids off to school this morning as they were fighting on their way out the door. Lol. What does an average middle class American family spend to send their kids back to school? I don’t know, but here is what I came up with. I spent a total of $450 on school supplies. The big time expense this year was a calculator that cost over $100. I really was hesitant on this purchase until the teacher said that all math problems will be shown on this specific calculator. If I buy a cheaper model it will be at the expense of my child. What really sold me was that it could be used on the ACT test assuming that my child doesn’t lose it before then. When asked about getting an extra warranty, I said forget about it. I mean, really? I don’t think that my son will be overusing it. The probability is statistically higher that he will lose it. 

I spent another $230 on school fees. This included laptop warranties, marching band uniform, parking permit, and general class fees. Plus I still need to sell 10 magazines or pay $100 so my daughter can graduate. It was hard to send off my daughter on her first day of her last year of high school and my son to his first day of high school. I know how fast the time flies. Almost as fast as this summer went by. 

I spent another $190 per child on clothing which included shoes. Both my son and youngest daughter graduated from kids clothes into adult clothes this year. My son grew a foot since last year and is taller than me now. My 12 year old daughter went from a kids size to an adult size 12. They all have shoe sizes bigger than mine. I found that adult shoes cost a lot more than kids shoes. 

So, I ended up spending a little more than I thought I would….maybe next year I don’t want to know how much it costs to send my kids back to public school. I will focus on the benefits instead. Sounds good to me. 

A letter written to my only son

Next week my son will be starting high school for the first time. As part of the orientation tonight, parents are strongly encouraged to write a letter to their child to read upon graduation. I wanted to share my letter with you:

To my only son as you graduate, 

I remember the day you were born. Your little cowlicks promised wild curls that would be untamable. You were a mama’s boy, I thought for awhile that you would never grow up, never want to leave. We would sit for hours reading stories of monkeys stealing caps, the adventures of toad and frog, or about the puddle ducks and Peter Rabbit. Then one day we put the kids books away. 

Remember when you used to suck your fingers? We tried everything to get you to stop. We tried putting a mitten on your hand at night and the spicy varnish which you exclaimed to like spicy foods. Then one day, you decided that you were too old to suck your fingers and stopped on your own. 

Then you got older still. You told your dad and I that you no longer believe the things that we believe. You said you needed to figure things out on your own. Even though we worried, we knew that you needed to find your own way in life. I sometimes fear that the road you walk will be rocky, but sometimes even the “Rocky Road” can be sweet. Once you find your place, I know that you will stand up for what you believe even if you are standing alone. That stubbornness and conviction is something I’ve always admired in you. 

Earlier this week, you told me that you really didn’t want to be with me anymore, that you wanted to hang out with your friends. For a minute, I wanted that little boy back. As much as I want to hold you tight, I know that I have to start untying the strings that have you fastened to my heart. I have to start letting you go. I hope and pray that you find the right path to start your journey on. No matter what happens, your dad and I will always love you. 

Love, Mom