My Hero

I had an interesting conversation with my son today.My son is a person with autism. He is 26 years old. I started questioning his pediatrician when he was just a little more than a year old.We visited our first so-called expert when he was 18 months old. Much has changed since then, thankfully. Those first 'experts' were so wrong about so many things.

My son is my hero. He meets every day with optimism, and is truly the most content person I have ever known. Things most of us take for granted can be difficult for him,but perseveres and learns how to deal with any challenge.

Having a conversation is not easy for him. He talks to me the easiest when we are in the car. There is a reason for this, when we are in the car, Mom has to pay attention to driving, so I can't ask him for eye contact, or even to look at me. Because his brain works differently, he doesn't see things the way most do. He can't read body language or facial expression. He is challenged by tone of voice. Today, it dawned on me that that also describes those of us who communicate with others on the computer. When we read a post on facebook, or a message board, we can only read the words. We can't read body language, or facial expression. We can't hear the tone of voice.

So, back to the conversation I had with my son. We were discussing a commercial we had seen while watching some NASCAR programming. In the commercial, a driver mentions that the rate of autism in our children is now 1 in 110. When my son was diagnosed nearly 25 years ago it was thought the rate was 1 in 10,000. So our conversation was centered on not only the need for awareness campaigns, but on the increase in numbers of persons with autism.

I guess I need to point out that we have always considered my sons autism as a blessing. We accept that his brain works differently, and that that difference is not bad, it is just different. I am often astounded at the way he thinks. I was told I was "an unrealistic" parent by certain experts because I said that if we can figure out how the autistic brain works we would find the answers to most of the worlds problems. I thought that when my son was a toddler, I totally believe it now that he is a young man.

When we talked, my son said awareness is necessary so that more people can see that different is just different, not wrong, or bad. Just different.People need to see that there is nothing to be afraid of when someone is different,and that being different doesn't make you less of a person. We also talked about how awareness campaigns might help those who aren't blessed with autism to be more patient with some who are.

Then we talked about how many more people are being born blessed with autism. That is when I was reminded that the answers to our problems might just be in those autistic brains. "What if," he said, "there are more people with autism because the world needs the way we think. What if our brains are evolving to help."

What if, indeed! In a world where more and more communication takes place on the computer. More and more communication takes place where we are unable to read body language, facial expressions, and tone of voice. In a world where in my lifetime technology has evolved more than I can even comprehend some days, what if more people are being born with brains that function differently because we need them.  I was definitely given something to think about, and that is only one of the reasons he is my hero!

Let's Go Racing!

Last weekend was a racing weekend. My son and I have season tickets at Kansas Speedway, and yes I have had people question whether that is a good use of our money. I usually answer that if I have to rob a bank, my son will have his Nascar tickets! It is a one of the no compromise parts of our budget. There are only a couple of people who the right to question, and they don't. Our entertainment dollars are budgeted for the Nascar tickets, and the return on investment is priceless.

Nascar is one of my son's sports interests, and it has been very good for his social skills. When we were at Crazy Horse Memorial he was able to have a conversation with a stranger once the subject of Nascar came up. When we go to the Speedway, the other season ticket holders that sit around us no longer notice the things that make him different. In fact, our arrival is eagerly anticipated and my son is warmly welcomed. Everyone is glad to see him.

One of the positive aspects of my son's autism is that when he becomes interested a sport or any other subject he studies it in depth. In fact, I would venture that very few people understand the rules of a sport he is interested in as well as he does. Now that I think about it, it may be a male thing more than an autistic thing. My late husband could give you infinite details about college football teams and players. My son can do the same thing about Nascar. He knows the rules, he knows who owns and  drives every car, he knows every detail of every drivers career. And he knows the rules. So, when we go to the races, the people around us don't see someone who is challenged, they see someone who is knowledgeable. They see someone who can answer any question about the sport, and they look forward to sharing that sport with him.

It is always a joy to go to the races with my son. It is always good for me to see him in a situation where he is admired. Now I personally think he is the most amazing person I have ever known. But, I admit that as his Mom I may be a tad biased, so it is always good for me to see him succeed in a social situation.

Races are a week long round of activities in our lives. There are show cars displayed around town and there are opportunities to meet your favorite driver. We take advantage of as many of these opportunities as we can. One of those opportunities this year was also what I call a divine appointment. Like the young woman I was able to share with at Mt. Rushmore, or the gentleman that talked to my son at Crazy Horse, an opportunity to be in the right place at the right time. We were standing in line at a local grocery store waiting to meet Clint Bowyer. I got in a conversation with the 2 people in front of us in line.

The conversation started off about Nascar. But was soon about something even more important. It turned out that the gentleman was the father of a 9 year old son, a son blessed with autism. As my son was able to hold a conversation with this man about the sport of Nascar, I could see that something even more important was happening. This father had never met an adult with autism, and he was soon sharing with me how important it was for him to be able to talk to my son. To be able to first see my son as a fellow Nascar fan before he saw him as a person with autism.

When we become parents, we dream dreams for our children. The first time you hold that child in your arms, you think of the future.As your child grows from a newborn to a baby to a toddler, you start to imagine what they might be when they grow up. When you start to figure out that there is something different about your child, and then perhaps when you receive a diagnosis you often have to let go of some of those dreams, but you are in uncharted territory, and you don't know what the future is going to look like. So often, we have no frame of reference because we have never met anyone who has faced similar challenges. Standing in line that day, this father met an autistic young man. A young man who was knowledgeable and interesting, and for the first time in a long time this father could imagine a future for his son.

I think that is a great return for our Nascar dollars, don't you? Makes me a very proud Nascar MOM!

Where were you at 22?

My husband was killed by a drunk driver.

Quick, what picture did your mind flash when you read the words 'drunk driver'?

In our case the words 'drunk driver' mean a 22 year old girl. A lovely young woman with her entire life before her. Recently graduated from college, with honors. From all reports, she was a goal oriented, studious college student.She is very close to her family, she goes to church on Sunday. After her May graduation she went to work, as an accountant and moved into her own apartment.

After she got off work Friday night, she reportedly went out with some friends. Young people, enjoying themselves on a Friday night. Laughing, talking, drinking. Then she got into her car to drive home. Her blood alcohol level was around .118, well over the legal limit. In her intoxicated state she drove up a freeway off ramp, past the signs that said WRONG WAY and drove northbound in the southbound lanes for a couple of miles at freeway speeds until she hit my husband's car head on, killing him instantly I am told.

This is on my mind because my friends and I have children in this age group. Children that are stretching their wings. I remember reading somewhere about how a butterfly struggles to exit the cocoon. If we were to help the butterfly, the butterfly would not be able to fly and would die. It seems that the struggle to break free creates the strength necessary to fly. Those of us with growing children know the truth in this. We watch as our children struggle with the silken constraints, and we want so much to help them, but the most we can do is hope that we have taught them right from wrong, and that life is always about choice, and every choice has consequences. We watch our children stretch their wings, and hope they know that there is nothing they can do that will make us stop loving them. We hope they know that when we see them struggle, we will do our best to make sure they learn how to fly.

My husband and I were always very open with our son about our youthful struggles with drugs and alcohol. We felt that since genetics may play a role in addiction, we had a responsibility to tell him our stories. He knows about our 12 step programs, and why we attend. He knows that we celebrate 2 birthdays a year. In fact, he has been quite proud of our milestones over the years. He will tell you that we choose not to use alcohol at our house. He will tell you that we choose not to use illegal drugs at our house. He will tell you these things with pride in his voice, because he knows that in life there is always a choice, and every choice has consequences.

Being a parent is a hard job. We watch our children stretch their wings with such pride and fear. What if we see them struggling, when do we help, how do we help. Have we talked to them about the embarrassing stuff? Kids will groan when the subject turns to sex, drugs, alcohol. They will roll their eyes, but we must tell them anyway.

Do your children know your stories? Do they know that you were their age once, and that you made choices and lived with the consequences of those choices. Sometimes the consequences are benign. You are 22 years old and you choose to celebrate the end of the work week by going out with friends and laughing and talking and having a good time. Since you are choosing to have a drink, you have chosen whose turn it is to be the designated driver.

Sometimes the consequences are tragic, and you have too much too drink and you choose to drive drunk, and you drive up the off ramp past the WRONG WAY signs and you kill a man, and nothing is ever the same again.

Blessed

I think the first time I realized what a challenge my son was going to be was the day(2 years old) we took him down off the roof...then there was the day he went shopping(4 years old), moving a 250 pound sofa sleeper, unlocking 3 locks to get out the front door. Running down the street, entering the grocery store , grabbing a cart, and methodically heading up and down the aisles choosing items. The shopkeepers recognized him, we were regular shoppers in our neighborhood grocery store.The manager said they  assumed I would soon follow, so they let him shop.That was the day I put bells on the door.

Or was it the day when he was 5 years old and he slipped out--he had an uncanny knack for taking advantage of my bladder--of my auntie's front door, ran down to the intersection of a one lane street and a 4 lane thoroughfare. STOPPED traffic with his hand upraised, crossed the thoroughfare, and calmly entered the convenience store,where kind people called the police,and bought him an ice cream while waiting for the police and mom to show up! The police and I got there about the same time.

Perhaps it was the day in third grade when they called to inform me that my son had hacked into the school computer system and locked everyone else out! They wanted me to help convince him to tell the IT guys what he had done. When I asked him to tell the IT guy what he did he responded "He is the computer guy he should be able to tell." I said "Well, he can't, you have to tell him." Then I heard a sigh and a few keystrokes and my son said,"There I changed it back." We discovered that he had stolen his teachers password, not by watching, but by hearing her type it in. He could tell the sound each key  made. So, William had to go into the hall with the classroom door closed whenever his teacher wanted to log in.

He has kept me on my toes through the years, and it is evident to all who meet him that he is a unique individual. The most amazing person I have ever met.This week we met a new challenge, illness. He has been a very healthy young man. All of his life. So, when he let me know last Sunday that he was in pain, I knew it was serious.The pain was in his lower right abdomen, so of course, the immediate thought is appendix. When we finally got to see a doctor in the Emergency Room, that was her first thought too. So, off we went for a CAT scan.Fortunately I am not squeamish, so I was able to be with him through all of his procedures.

I felt like a really bad Mom, because as we answered questions, it turns out the pain had started several days prior to my finding out. I had been questioning him, since it was evident he wasn't feeling well. But, I didn't ask just the right question until Sunday. So, we wait, all day Monday, in the ER. The CAT scan comes back, and the first diagnosis is possible ruptured appendix. That scared the hell out of me, but I couldn't let him know. He was already stressing out, and shutting down. Autism at it best. In order to deal with pain,  he could just retreat into his world, where it doesn't exist. But, in order to help the doctors and nurses find out what is causing the pain he has to be able to communicate with them. Now, we need the translating skills of Mom.

As we are admitted to the hospital, he is using all of his coping skills, and doing an amazing job. Then, during the day it happens. The nurse is not having much luck finding a vein for the blood draw. She is hurting him. He does not cry out, does not yell-all things I do when I am getting my blood drawn. He closes his eyes, grits his teeth, and reaches out and grabs my hand.

The surgeons come, they poke and prod and then leave to read the CAT scan. Miraculously they find a healthy appendix. But right next to it is a large abscess. It must be removed, but how? Fortunately a wise surgeon decides that surgery is out of the question. We do not know yet what type of infection is contained in the abscess, so we go off to the ultrasound department. The doctor is going to attempt to draw out some fluid from the abscess to culture. He looks at the image on the screen, even I can understand what the image shows. He changes needles, and he decides that he can totally drain the abscess. Everything is explained to us, I explain to my son,  the doctor uses a local anesthetic,and once again my son reaches out for my hand and I watch through tears as the abscess disappears, its contents in several large syringes.

 I can not remember the last time my son allowed  me to hold his hand, and here he is holding on to mine. At this moment in time, all of my grief, all of my fears, all of my stress do not exist. There is only my son holding my hand, and me thanking my Creator for choosing me to raise this child.

At my  infant sons christening I asked Most High to help me make sure that my son would experience the magic of childhood. The answer was the gift of autism. The most amazing blend of special needs, genius, and faith that is my son. My son believes that God will always provide, and that whenever we meet a challenge, Mom can find the answer. My son trusts me to help him learn to navigate a world he has trouble understanding. It seems miraculous to me that he is holding my hand. I will never forget the feeling of his hand in mine. I am humbled by his trust and faith in me, humbled by God trusting me to raise this special child. I am overwhelmed by emotion. I am truly Blessed.

January 19, 1981-January 19, 2011

Oh my word, I haven't had a drink in 30 years!

Today is my birthday. Not my belly button birthday, my day I got clean and sober birthday. It's one of those milestone numbers this year, you know, those numbers that end in a zero or a five. Today I am celebrating 30 years of sobriety. Celebrating 30 years of choosing to deal with life and all its challenges, obstacles, defeats, and victories without using drugs or alcohol.

I don't remember when alcohol wasn't available to me. My older brothers-14, 18, and 21 years older than me- were the kind of guys that thought it was cute to give a baby or toddler a sip of beer, or whatever cocktail they might be drinking. There was always a bottle of whiskey in the kitchen cupboard, and when my dad wanted a glass of wine in the evening, he sent one of us to get it.Alone in the kitchen, no one was there to see me take a swig for myself. If there were family gatherings, not much attention was paid attention to what you were grabbing out of the cooler. After all, the men usually sent a kid to get the beer out of the cooler. So I developed an enjoyment of the taste and effect of alcohol at a very young age. It was an easy way to make life stop hurting for a little while.

Oh my word,I haven't had a drink in 360 months.

Of course,as soon as I left home it was no problem. I looked older than my age, and was never carded. Really, the first time I was carded was on my 21st birthday. There was a new guy at my liquor store, and he carded me and wished me a Happy 21st birthday. The owner was shocked, since he had been selling me alcohol for 4 years. But, he didn't make a big deal about it. I was a very good customer. By the time I was 21, I was drinking every day. I had started down that road as a teenager with undiagnosed bipolar disorder. I was self medicating with drugs and alcohol for several years. When I was diagnosed, I started letting go of the drugs, but consumed more alcohol to make up for it.

I drank my way through college, and 5 years into my working life. I managed to get good grades, and do good work while I increased my drinking. I had good jobs, but my drinking caused me to make some really, really stupid decisions about men and relationships.Just like the song says "Looking for love in all the wrong places."

Oh my word, I haven't had a drink in 1565 weeks.

I knew that eventually I would have to quit drinking. I knew that it was impossible for me to drink in moderation, and I hated that, because there were things I truly enjoyed and did not want to give up.I truly enjoyed choosing the right wine for a good meal. I truly enjoyed a cold beer on a hot afternoon.But, as much as I wish I was, I am not the kind of person who can stop with one glass of wine, one cold beer, one mixed drink. So, I had to listen to the small voice and quit. The last time I got drunk was on a Sunday night. I had been to a party. I don't remember much about the party, I had been drinking all weekend of course, but for some reason I got really drunk at that party. I think that I totally embarrassed myself, and a friend suggested we leave and go somewhere else. We ended up at her Mother's house. I don't remember how we got there, but I do remember sitting at the kitchen table drinking coffee and talking to her mother until 5 o'clock Monday morning. I drove home and got in the shower and then I decided to call in sick and get some sleep. I had never done that before, I always went to work. In fact, I got in the shower intending to get ready for work, but while I was in that shower I started getting quiet, and when I get quiet I can hear the small voice, and the voice said "It's time to heal."

So, I called in sick, went to bed and slept for a couple of hours. When I woke up I felt like crap.I never got hungover, but that day I was hungover. I spent some time feeling sorry for myself, but then I remembered hearing the voice. I knew that it was time to stop numbing the pain, time to stop dulling the memories and to start healing the wounds. I called my doctor, and went to see her. I had a good talk with her and she referred me to a therapist. She called him right then, and he saw me that afternoon.It was Monday, January 19, 1981. The therapist said that he would work with me, but he also suggested that I go to AA. He got out the phone book, and handed me the phone. I made the call and found a meeting that evening. That was the beginning of my journey to health and wholeness, a journey I am still on. It is not an easy journey to start. It is not an easy journey to continue, but it is a journey I believe we must all undertake.

So, here I am. I haven't had a drink, oh how I have wanted to, but I have not had a drink.My Higher Power and I are taking a journey. One day at a time.
 Oh my word, I haven't had a drink in 10,957 days.

God,
Grant me the serenity;
To accept the things I cannot change;
The courage, to change the things I can;
And the wisdom, to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
As it is, not as I would have it;
Trusting that He will make all things right
If I surrender to His Will;
So that I may be reasonably happy in this life
And supremely happy with Him
Forever and ever in the next.
Amen

Peace and Blessings,
EstherBelle

Equal Time

Well, I really must tell some stories of my little mama, equal time and all of that.

Talking about Mother is totally different than talking about Papa. I occasionally called her little Mama, especially if I was talking about her, but usually I called her Mother.Her grandchildren called her Mom-she didn't like to be called grandma. Mother was a lot more complex person than my father. Not as easy to get a handle on most days. She would look you in the eye and truthfully tell you her age, or her weight. But she would lie about her height. Mother was probably just a tad less than 5 foot tall. As she aged she shrunk down to about 4'10". But all of her adult life, she would tell people she was 5' 3". Now, everyone knew that wasn't true, but you did not contradict my little Mama. So, even though I was taller than her by the time I started kindergarten, Mother continued to claim that she was 5' 3". I asked her once, when I was a brash young teen, why she told people she was taller than she really was. She looked up at me as if I were an alien from outer space, calmly said "I am 5' 3" tall, I always have been." That was the last time I brought up the subject.

I was 6' tall by the time I was a teen, and 6' 1" before I stopped growing taller. People would look at us when we were together, of course, commenting on my size, and Mother would tell them "Shoot, she'd be 7' tall if she didn't have so much tucked under for feet." or "I grew her that tall on purpose. The man who built my kitchen cabinets was 7 foot tall, I wanted to find out what he might have left on the top shelf."

Mother was sometimes a difficult woman. She raised 6 children, and as we grew older there may never have been a time when she was speaking to all 6 of us at once. She had a bit of a mean streak sometimes, and she seemed happiest when she was surrounded by drama. Now this doesn't mean she wasn't the best parent she knew how to be. I think in those days most parents were doing the best they knew how. They were so wrong sometimes, but I honestly believe it was because of the times we grew up in, and not necessarily maliciousness on the part of our parents. My Mother may have been a strict disciplinarian at home, she may have exerted total control, but do not let a teacher or other adult pick on or treat one of her children unfairly. Little mama became a giant in those situations.

One of my favorite stories is told from her perspective and mine. My 1st grade teacher was not the best teacher in the world. I was a complication for her, and she would write notes home to my mother. Mother told everyone that she thinks I was born knowing how to read and write, because she certainly didn't remember teaching me and according to her I was reading at age 2. I think she probably wasn't exaggerating too much, because I do not remember when I didn't know how. Well, my kindergarten teacher thought I was a bit of a problem, probably because I would get bored and rather than napping preferred to spend time reading. In first grade, we started learning to print our letters. The issues arose because I already could write, in cursive, and except for the printing lessons, would write that way. So a letter from my teacher would go home with me, and Mother would respond with a lengthy letter back. I suppose it would have been too easy to call each other.

The teacher wanted Mother to tell me that I wasn't allowed to write in cursive. It seems it caused a problem for the teacher because the other students saw me do it. Mother apparently wrote back that the teacher should not be showing my work to the other students and that I was to be allowed to carry on. Well, that letter must have amused my teacher, because I was on the playground during recess when my teacher and another teacher called me over and asked me in not kid friendly terms who my Mother thought she was. In the middle is not a comfortable place for a 6 year old to be. Mother ended up in the Principal's office, and according to her the principal, Mr. Johnson, started explaining that first grade children could not be allowed to write in cursive because, as told by Mother, "We use slim pencils when we teach children to write in cursive, Mrs. Jones, and at 6 years old the muscles in their little hands aren't strong enough to hold a slim pencil." The next thing my mother said was a question, "You don't have any idea which child is mine, do you Mr. Johnson?" He admitted as much and mother told him to call me to the office and that the conversation would not continue until I got there.

Now I knew my mother had planned to speak to the principal that day, and so when the call came to my teacher and she sent me to the principal with a smirk on her face I was a bit anxious by the time I was ushered through the swinging gate into the inner offices. I was escorted into the Principal's office by the school secretary, and my little mama came and stood shoulder to shoulder with me.I was about 1-2 inches taller than her. Then she said "Tell me again, Mr. Johnson,  about the muscles in her little hands." Mother grabbed my 'little hand' and said we were leaving. She asked me where my class was, we marched down the hall, she went in the classroom, the teacher sputtering that she was disrupting the class. Mother told her not to worry, it wouldn't happen again. Mother cleaned out my desk, and we went home. I was transferred to a different school a couple of days and some phone calls to the school board later. My Mother may have had issues with her children, but she was always our staunchest supporter when it came to others having issues with us.I still miss my mother, especially when my son does something amazing. I will think, I should call my little mama. I learned a lot about advocating for my very special child from my mother advocating for me.

I also learned to say I love you to the people I love. It was something I never heard growing up.It was a different time. My parents didn't say it to each other or to us children. I think it would have made quite a difference if I had known how much they loved each other when I was young. I know how much of a difference it would have made if I had known if they loved me.I was blessed that both of my parents died at home in my arms. It may not have felt like a blessing at the time, but as I look back it was. I was able to say good bye to them, knowing that I had forgiven them, and hoping that they had forgiven me. But, no matter, I know that they were loved, and surrounded by love as they crossed over. I wish my husband had not died alone in a car on a freeway. But I know he knew he was loved, and I knew he loved me. We had the opportunity to say that to each other a couple of hours before he was killed by a young woman with almost twice the legal limit  blood alcohol count.My husband and I told each other that we loved each other dozens of times a day. William would turn around, and roll his eyes when would 'make out' in the kitchen. But he knew his parents loved each other, and he knew he was loved, because we told him every day. I still do, I always will.