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!

Social skills?

Our neighborhood had it's fall picnic over the weekend. Unlike the weekend before, the weather was perfect, and the turnout was good! My son went with me for the very first time. He used his best social skills, shook hands with the people I introduced him to, enjoyed the hamburgers and hot dogs, stayed much longer than I thought he would, and chose to leave when he felt uncomfortable. I was very, very proud of him. His social skills get better all of the time.

This story isn't about my 26 year old autistic child, however. This story is about neighbors.Like  the 2 year old I met at the picnic. His behaviors were the spitting image of my son at that age. He was a beautiful little boy, the MOST interesting grey eyes, and to this MOM, exhibited many characteristics of autism. His parents had their hands full keeping up with him!

I attempted to open conversation with his parents a couple of times. After all, if he is indeed autistic, I have a lot of experience. I could offer support and encouragement. But, they are fairly new to the neighborhood, and seemed a bit wary. Now that may or may not have anything to do with their son, who may or may not be autistic. It could have just been the nerves of meeting all of us old folks, many for the first time.

Our neighborhood is a throwback to a different time. The 100 homes in our subdivision are inhabited by mostly older folks who have lived together for decades, raised families together, become family for many. I can remember the address of the Southern California house I grew up in, if pressed I might be able to figure out the addresses of the rest of the houses on our street. But in my mind, and my memories they will always be remembered by the names of the families that were living there. Our house was the Jones house, William E to be specific, and we had to be because directly across the street was the William H Jones family-no relation. There were 6 original families, families who built their homes themselves, upgrading over the years. Then in the late 1950's a new subdivision replaced the fields across the street creating a new neighborhood. A very interesting neighborhood, a mix of ethnicity's and family styles moved into the really nice 3 bedroom houses-2 floor plans available-that were affordable for working class families.

The homes were built on the same floor plans, but every house had it's own color and landscaping as the families made them their own. As we children grew up together we knew all of the houses by the names of the families. We knew that we were safe on our way to school as we walked past the Bartletts, the Martinez, eventually past the Bachelor's house. As an adult I know that the bachelors were a same sex couple. As a child, they were just the Bachelors, a very important part of our community. They were always there to lend a helping hand when needed.

I thought about the Bachelors today. I was reading some really hate-filled comments on facebook, and I felt so blessed that I grew up in a diverse neighborhood. A neighborhood where you were not judged by anything other than your being part of our lives. I don't know when it dawned on me that the Bachelors were a 'same sex' couple, because it just didn't matter. What mattered was that they were neighbors. Good neighbors. It can be so easy to get jaded in this day and age, but then I think about our neighborhood and the neighborhood I grew up in. When I see people saying ugly things, I need to remember that there are places in the world where you can grow up to believe that all people are just your neighbors and it doesn't really matter whether you have much in common with them other than the most important thing, they are part of the weft and weave that makes up the tapestry of your life. Just like this neighborhood has been for my unique son, and hopefully will be for the little guy with the grey eyes.

We Are All Related

We returned home yesterday after an incredible week of vacation. We spent time with friends in 2 different parts of the country, and met many wonderful people along the way. We felt the peace and sacredness in places that were as varied as landscape can get. From the lush verdant farmlands of the midwest to the striking Badlands and Black Hills, we found sacred ground where the Spirit of the place touches you so deeply that you will never think the same way again. But even more importantly we found people.

'Mitakuye Oyasin' is the Lakota phrase that says We are all related-We are related to all things!Four-legged, two-legged, winged ones, swimmers, crawlers, plant and rock people.We are all related. As we traveled this week we felt this relationship even more strongly than ever. As we drove the scenic drive in the Theodore Roosevelt National Park and a group of wild horses came right up to us, it was easy to believe that all things are related. As a wild horse put its nose a few inches from the face of my autistic son and his camera, there was no question that the horse knew to be gentle with my son. Yes, in that moment 'all things are related' was very evident. But in other moments we met other two-leggeds who seemed to instinctively know how to relate to my son, and he was afforded the opportunity to practice social skills we have worked long and hard to instill.

At Crazy Horse Memorial, we shared a picnic table with a couple from Minnesota and a couple from Rapid City. The man from Rapid City just happened to  be a Nascar fan. He and my son were able to talk about their love for all things Nascar. It didn't matter that one of them was a successful businessman and one of them was an autistic young man, it mattered that they were related in their love for a sport. It mattered only that all 6 of the people sitting together, from different parts of the country, different lifestyles, different faith traditions, were related by Creator and  their love for the Spirit of this place, and the spiritual need to be there on this special night. It mattered only that we were sharing and honoring the sacredness of relationship.

Relationship is an attitude that we found in our travels. We may get so wrapped up in our day to day existence, our problems,routines, issues, that we forget this important lesson. Relationship is based not on blood ties, nor proximity, or even similar belief systems. Relationship is the underlying commonality that we seem to have lost in our hectic lives. We see all around us, on the internet, on the news the differences that keep us divided and suspicious of each other. What we really need to be reminded of is that even when we are from different places, believing different things, we are related. An autistic young man and a South Dakota businessman can come together in conversation. A wild horse can recognise the special need of a  two-legged brother who is different and behave with gentleness, and in doing so honor our relatedness.

Autism Awareness Month

It seems as if everywhere you look this month you see another magazine, another facebook page, another organization telling the world that April is Autism Awareness month. From the paint jobs on Nascar race cars, to the shoulders of ball players, to the fb pages of my friends Autism is the cause.

When I first became aware of autism the statistics being touted were that one in ten thousand children would be affected by autism.The research was minimal, and much of it still blamed the condition on bad mothering. When I first became aware of autism, most educators had never heard of it. Most teachers had never met a student with autism, because students with autism weren't in school. When I first became aware of autism, parents were still being told that their children would never speak, would never interact in any meaningful way with other people and would be better off institutionalized.When I first became aware of autism, my son was 18 months old.

I started questioning some of his behaviors with his pediatrician. Those questions would eventually lead us through children's hospitals, university hospitals, as well as clinical classrooms attempted to get a diagnosis. Now, a correct diagnosis when it comes to special needs children is so important. It is the only way to get your child the proper services from the school district. Like other families back then, we went through some wrong diagnosis before we got where we needed to be.

Our pediatrician sent us to a clinic at the local hospital. the very hospital where my came into this world. This hospital diagnosed my son as severely mentally retarded. Now, I may have just been the mom, but I knew this wasn't even close to the truth. So, off I went to the Children's hospital where my son was diagnosed as having a communication disorder, and for 3 pages of the 6 page diagnosis, a bad mom. Interestingly one of the criticisms of the 'experts' at this hospital was that we did not have a TV. It was written that I talked to my child too much. Honest, that's what they wrote. They also wrote that I was unrealistic in my expectations. I expected my son to be able to overcome whatever challenge was thrown at us, and to succeed. How dare I believe in my son!

This diagnosis of a 'communication disorder' was at least good enough to get us a placement in an early intervention program. My son, started school at 3 years old. He has always loved school and learning. We have always been blessed with good teachers who cared about  their students. The preschool program he was placed in had 10 students per classroom. I spent as much time in the classroom as he did. Parents were encouraged to be there and work with the teachers. As I looked around most days, I was the only parent there. I was stunned to learn, in overhearing a conversation between two teachers that in my sons classroom all of the other children were there because of problems created by the mothers drug use during pregnancy. What a sad statistic, having to do as much as where we were living at the time as anything else.

Eventually, I could feel Spirit telling me it was time to move. Raising a special needs child as a single mom was going to be easier in the Midwest.So, we moved. The first house we lived in was in a school district that chose to not deal with my sons challenges. By this time i was certain that my son was autistic, and I let school district administrators know this. A parent attempting to educate and autistic child was a new thing, and it took me a while to find the right school district. Eventually we did, and we moved again. My son registered in kindergarten, I took him to the local hospitals, and finally we had a diagnosis of autism.It took four years of doctors and educators to diagnose my son. Autism at that time was a relatively unknown disorder.

My son was blessed. We ended up living in an excellent school district that provided excellent programs and teachers for him. We are aware that other parents are still fighting long and hard for their children. Our journey through school was challenging, but in our school district he was able to thrive. My son was the first autistic student in the district. He would soon be followed by more autistic students as statistics changed. When i was taking my son from hospital to hospital-six in all-the statistics were one in ten thousand. Fast forward 20 years, it is April. Autism Awareness Month. Hard to believe that we have come this far in such a short time. Hard to believe that the statistics now say one in one hundred and ten children will be affected by an autism disorder.


When I first became aware of autism it was considered a rare disorder, now it is so common that it has a Month to raise people's awareness.Look around you, I bet you know a family that is being challenged by autism. In your schools, in your churches, in your neighborhoods. This month, be aware, when you see the blue lights lighting up a neighbors house, ask, they will be glad to talk to you about autism. When you are surfing the internet and you see the blue puzzle pieces in a logo, stop and take a minute to read the article.

Autism has always been around, all we ask is that you take a few minutes to become aware. Afterall, isn't that what awareness months are all about?