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Friday, May 31, 2013

The Great Defeater

Of everything I've written and haven't written there is one challenge that, at least for me having Asperger's, is above all others. This is something everyone has whether they are on the autism spectrum or not, but for those of us that are on the autism spectrum this one thing can create problems that can cause issues across the board.

Writing about this topic started when I saw the review from yesterday's post. I've gotten away, I feel, from writing about what's going on internally and this "Great Defeater" as I'm calling it is something that, from the outside, can not be seen and perhaps can't be understood as well. This great defeater has a word and it is known as anxiety.

Why is anxiety is so bad? It's something everyone has, right? So if so, why does it seem to be overpowering for us with Asperger's? I can't explain what it is like to be normal and have anxiety, but the way it wreaks havoc with my brain is something that, unless you are on the autism spectrum, I'm not sure you can truly appreciate the challenge of it.

There are so many examples in my life that anxiety played a major impact in the events of my life. I may share some examples, but first let me explain what it feels like. So often, when something isn't known or things don't go according to plan anxiety starts to creep in. Why does this do? My body and sense are overly-sensitive and I am hyper-sensitive to my surroundings. This is something that can't be turned off. How can I compare this to something that anyone could appreciate? Think of it this way; let's say there is a door that leads into a room that has no light. You are at the door frame wondering if you should go in as you do need to cross whatever room is within the darkness to reach the other side. There's a guy near the door that informs you that, "the dark room will create some pain." Okay, that's fine, but how much pain is "some"? Also, within the darkness you hear some screams, and some sounds that sound like an animal but you are fully confident. Yet, at the same time, there is a laughter that is out of place. What would be going through your mind at this point in time?

This is the essence of anxiety, at least for myself, living life on the autism spectrum. This dark room I mentioned has no concrete information on what is in it and whether or not it will or will not be bad; the only thing to go by is some passerby that says it may hurt and all the sounds going on within which means the imagination is the only thing that can fill in the blanks and a lot of us on the spectrum, despite not being the best at imaginative play, can have a vivid imagination.

It is amazing how fast I can go from all's well to red alert. A good example is this; at least once a month I'll hear a car accelerate hard from a stop sign. The sound of the rapidly accelerating engine is often, at first, not able to be distinguished. This sound often times sounds just like the start of a civil defense siren. My brain works so fast that I instantly begin to wonder how bad of a situation is about to unfold. An attack? A tornado? Something worse? My body instantly goes into a hyper-defensive state and I'm prepared for anything. A few seconds later the engine becomes distinguishable and I realize there is no crisis happening, but my body remains tense for some time thereafter.

I'm calling anxiety "The Great Defeater" because I'm beginning to believe this is near the top, if not the top, of the list of things that causes the greatest struggles day in and day out. Imagine having every change in the environment creating a panic like I mention with the simple sound of a car screeching away from a stop sign.

This also wears on me socially; anytime someone has a tone that has a hint of aggressiveness, passive aggressiveness, or any other emotion that I am not expecting I instantly go into a state of panic as I try to analyze why this person is mad, how mad they are, and how much it's going to hurt me. Once again, this isn't a choice by myself.

Another aspect of this is that the more negative experiences that happen the more and more vigilant I will become. This is only natural as this would happen to everyone, right? I mean, if there were a light and every time you touched it you got shocked you would get more and more timid each time you had to touch it. So too is the way my brain works, but since often times I can't see that proverbial lamp I have to be prepared for it. Perhaps this level of anxiety I and others on the autism spectrum experience is our way our systems compensate for our inability to see things coming socially. I think this makes sense, right? I hope. Where most people can see danger coming I can't so therefore my body over compensates by fearing more things than it should and also fearing them with a greater fear than seems needed. This leads to something I hear all too often from those on the spectrum when they tell me, "I just hate it when my parents tell me, 'don't worry about it' because it's all I can do." For those of us that have fears, or phobias if you prefer, they tend to be amplified. To tell us to "not worry about" is like telling a fire to not be hot. While to the normal brain the fear, anxiety, or whatever else you'd like to call it may seem irrational to us it is perfectly rational and makes perfect sense.

So why is this the "The Great Defeater"? Living with this day in day out may, and I say may because, "if you've met one person with autism you've only met one person with autism" so living with this day after day may make a person withdraw; one would withdraw to an environment where fear isn't going to control them. The work place is a place we struggle and often times it's fear and anxiety that gets in the way and it is this fact that is the inspiration to calling this the great defeater. I've been there, I've lived this and it ruled my life. And on top of all this, and there has been a lot, hasn't there, and on top of all this we may seem perfectly comfortable on the outside. You can have no idea just how difficult routine events in life can be for us because of this reactionary anxiety. You can have no idea at all, but after this post I hope you have a better understanding.

Thursday, May 30, 2013

To Write a Word

When I started out on my writing journey back in 2005 I had no idea if anyone outside my dad when ever read my words. There was a thought though and that was, "If I write a word and no one reads it does it still matter?"

As I continued writing my book Finding Kansas I kept having that thought, in a way. I was writing simply for the sake so my dad could understand me a bit more, but at the same time I wondered whether or not my words would ever be read by just one other person because that's what I wanted; to simply be understood.

I've been tremendously busy this year and I feel my blog has slipped quite a bit. Also, I've wondered what the point is because what if no one reads it? Why go through the work (a normal blog post is usually several hours of pre-thought then the actual time to write it) if no one is going to read it?

There's a trap here; if a person wants to be read but doesn't start the work because they don't know if anyone will ever read the final product then, of course, they never will be read. Writing is a magical art form that allows you the reader to get a glimpse of another person's world. My goal when I started was just that and when I started I never envisioned the day someone else, a complete stranger in this world, would be able to buy, hold, and read my work.

The point I'm getting to today is I read something that brought me to tears today. It made me think back to all those nights I stayed up until sunrise writing about my life, my hopes, my dreams, and my fears. It was the boldest journey I ever took and today I read a review on Amazon.com. I have no idea on if a review is shareable but I'm going to do so anyway because I don't know if I've ever been humbled and honored more than what I was when I read this:

I read a review where someone said the book was dull and does not deliver on its promise of enlightenment. I HAVE to believe that this person is a scholar looking very superficially for some sensational, spine tingling account and not someone who loves and Aspie and has first hand experience. My 15 year old son has Asperger's and he is exasperating, frustrating, exhausting, overwhelming and depressing. . .but not so much on the "spine tingling" for those readers looking for that type of thing. Having Asperger's is not thrilling or exciting most of the time. Aspie's are trapped which is a word my son has used for years but it took so long for me to understand that. Life is grueling for him in a way that is difficult to fathom. There are parts in this book that might sound melodramatic if you hadn't heard it from your own child's mouth for years. The question still remains: Why? Why does this or that upset you? Why do you feel this way or that way? It's still unclear to me but that is ok. Clever analogies like the one about he film reel goes further than anything else I've read or researched to help me understand my son.

Aaron's wish was that people would read this book and it would change them has been fulfilled. It does. It will. I don't know what else you could ever hope for but a book like this. I've read so many but none of them fit my son. This is the first book I've read that talks about a boy who looks normal, often acts normal, does not flap or have any tics, can likely make eye contact, is able to have riveting conversation, is super bright and talented yet is unable to function (get a degree, hold a job, have a relationship etc.) We used to say our son always "took it to the mat!" meaning that if he didn't want to do something there was absolutely, positively NOTHING you could do to make him change his mind. He would rather be punished, yelled at, spanked, and it seemed he'd even rather DIE than to do the one tiny thing you asked him to do. Why go through THIS much drama? Why take it to THIS level? For the sake of not sleeping on sheets? Or not bathing? What is the big damn deal???

Well we may never know what the big damn deal is, we can only know how it may feel to our son. If it will not cause him harm and it means that much to him then fine. Sleep on top of the comforter with another comforter over you. Personal grooming? We will keep trying but a Don Juan our son is not. LOL. This book offers the very MOST you can ever know about Asperger's! Somehow Aaron has found a way to get it out and let us in and I am so grateful.

Credit to Aaron's father as well for understanding so much, so fast (or at least faster than my husband and I). Reading this book, particularly the parts about hating school and the father's dependence on the "--But your son is soooooo smart" comment to help ease the blow of all of the negative comments made about his son's behavior rang so true that it begs the question. . . .why does it still take SOOOOOOOOOOO long to diagnose Asperger's in kids when their experience seems to almost form a pattern that should be more obvious?

Finally, I am glad that my husband and I have been able to accept our son for who he is and rather than force him in to uncomfortable situations because we ourselves do not find them uncomfortable (and we think he shouldn't either), we are able to use the past as a template for living and pay close attention to body language in order to avoid meltdowns. What I mean is that rather than try to cajole, force or train our son to enjoy or participate in things that are "fun" for others but create overwhelming stress for him--we simply AVOID those things whenever possible. After reading this book you will understand that this is a small kindness rather than a weakness in parenting a kid with Asperger's.


To the reviewer I don't know if you read my blog, but let me say this if you ever do; thank you! This is exactly what I needed to keep my passion fueled up. I've been feeling tired the past month or so and wondering if this is my true calling in life but once again I know there is nothing else that I could be doing more important than this so thank you.

Wednesday, May 29, 2013

Riding in the car

After the cell phone dilemma of yesterday (all is well now) I am now headed to Pennsylvania for a USAC .25 race this weekend. I'm writing this from the car (obviously I'm not driving at the moment in case you were wondering) which it's car rides like this that I love. 

I love everything about a ride like this and I always have. Car rides have always been calming for me as when as I was younger, when I had a bad day, my dad and I would do a lap of Indianapolis on I-465 and this always lowered my defenses and I would open up and talk. So too, now, I feel much more comfortable conversing with those around me when confined in a car on a cross country ride. 

Why is this? For one there is consistency. What I mean by this is that there are no times in which a person is added or subtracted from the environment. We left with five of us in the car and we will arrive with five. This consistency allows me to build my confidence up. It's when there is fluidity in those who join and leave a conversation that affects my confidence. So when the people remain the same my confidence and level of comfort increases by the mile. 

Perhaps there is something with the ride itself sensory speaking. I've heard from many parents that if their child is having a bad time a ride in the car is a soothing experience. 

As for me, now, I've got another 6 hours of paradise headed to eastern PA. Most people would get tired of this, but I'm loving every minute. 

Tuesday, May 28, 2013

A Charged Situation

After a phenomenal Indy 500 (if you didn't watch you missed out on one of the most thrilling races flag-to-flag ever) on Sunday things, for me, took a sudden turn downward. Being at the race drained my iPhone battery so as I drove Ryan and his dad from Steak n' Shake to their hotel I plugged my phone in and it didn't register anything being plugged into it. I thought that maybe the issue was the charger thing itself so I didn't worry too much.

When I got to my sister's I immediately ran up the stairs to my room and I plugged my phone in. The result was the same; nothing. I then thought that perhaps it was that wall outlet so I ran down the stairs and plugged into another outlet and once again I got nothing.

My battery was under 10% and fear began to sink in. Everything is on my phone; my contacts, photos, e-mails, calendar. The question everyone asked is, "do you have it backed up?" and the answer is a resounding "no." For one I can't back it up to my work computer and the whole cloud thingy is something I've never touched.

The battery continued to deplete its final charge and as I tried everything from different plugs, to tapping the back of the phone, and to downright encouraging it to work it was all irrelevant as the screen went black. It was all gone.

This was a major crisis. Well, technically it still is a major crisis as yesterday I got a new phone as, and this seems overly convenient, I became eligible for an iPhone upgrade two days ago, but on the new phone I had nothing. Sure, it's faster (you can't honestly compare the two the difference is so great) and can do things my previous phone couldn't but I still have nothing. No photos, songs, and my all important calendar.

Right after I finish this blog I'm headed to an electronics repair store here on the north side of Indy to see if they can get a charge on the phone that is dead. If they can it should be possible to transfer the stuff I so badly need transferred. This is more than just a little bit of information as my photos are the epitome of the associative memory system. My e-mails, as I'm spending a few weeks on the road has got to be setup, and my calendar, well, I live by my calendar.

In just a few hours I'm going to know if they're going to be able to bring my old phone back to life. Sure, my new phone is great, but with out all the stuff on my old phone it has no soul.

Thursday, May 23, 2013

Annoying the Nephew

For the longest of times I was the world's worst uncle. This was due to the fact that I was in such a bad place emotionally that I really didn't have any ability to, well, care. Times have changed, I'm in a better place, and now I firmly believe it is the uncle's responsibility to annoy their nephew. Of course, this has to be done in a tasteful and hilarious way and oh, my poor 13 year old nephew.

I'm currently in Indy for the Indy 500 and the various other events that precede it such as the USAC Traxxas Silver Crown series race this evening at the Indiana State Fairgrounds where I will be the assistant starter (mother nature better play nice!) so I am at my sister's house. Yesterday evening I ordered a pizza and was going to have it delivered but my sister convinced me that I should drive and get it seeing that it is just two minutes away. I, at first, said I was tired, or something to that effect, to which my sister debated and I had no logic to counteract her points so I got my shoes on and went. My nephew also wanted to come so into the car we went and we made the short drive to the Pizza Hut.

This Pizza Hut is different as it has a drive-thru. As we pulled in I heard the CD I had playing which was a collection of TV Game Show themes. Since this was playing I figured I could have a little fun, and totally embarrass my nephew at the same time. Win-win!

I switched the track to an up-tempo theme which was from "The Joker's Wild" (listen to a modern day version of it HERE)  and, compared to today's music, it's different. I turned it up, put it on repeat, and finally when the door opened and the worker said hello my nephew couldn't contain himself. I think he was on the verge of tears due to laughing so hard which I don't know if he was laughing at me, at the situation, or at the absurdity of it all, but there was certainly a noticeable change in the drive-thru worker when he heard such an odd song being played.

After paying for the pizza he said it would be two minutes so I hustled to change songs. I had one chance to play the oddest piece of music one would hear from a car so I got my iPhone radio adapter plugged in and proceeded to play The Price is Right Cliffhangers Theme. Honestly, if you were beside any car anywhere I firmly believe that is the last song you'd ever expect to hear.

My nephew, as I cranked up this song, looked at me as if I had sunk to a new level; and perhaps I had. He then stared out the window trying everything he could to actively ignore the situation but it was no use as when there is yodeling going on normality just isn't easily found.

The window slid open and as the pizza box was handed to me a look of utter perplexity came across the worker's face. I'm usually not the best judge of facial expressions but even I could see that this person knew the song but couldn't place it. At this point in time I started laughing and grabbed the box and drove off before I started truly laughing. Not too many people have seen this, but when I find something funny I don't just laugh but rather I laugh to the point of pulling muscles and losing the ability to breathe. I got to that point on this one.

So that was my trip to Pizza Hut yesterday. It's a trip my nephew isn't going to forget for some time and I can't wait for the next misadventure I can put him through. I don't think he'll ever admit it but I think he secretly enjoys these rather odd encounters.

Wednesday, May 22, 2013

"Why Are You Here"

First, let me say that writing is becoming increasingly difficult. I have a couple of thoughts as to why this is. The first is that I am so busy that my mind is not having time to think. My concepts I've created and most of my blog posts are created in the subconscious and I don't put effort into creating the work. Already this year I'm up to over 65 days on the road so perhaps this is a cause.

Another potential cause is that I've become a master and controlling my surroundings and becoming more apt at handling situations which are outside my comfort zone. What does this mean? The first part is that I've become a master at avoiding uncomfortable situations. Also, since I'm always traveling, I've become decent at the whole "live life on the road" routine. The second part is that I think I've grown by an unmeasurable amount the past 13 months or so, and maybe just in the past three months. What used to be a major episode is now just a part of life. Just five days ago I had a conversation with someone wondering, "Do I actually have Asperger's?" and this is a common question I ask when there haven't been any reminders. Remember, Asperger's roots itself socially and if one isn't in social situations how could one be reminded of it? That reminder happened yesterday.

I went to the doctor's office yesterday and this was my first time visiting one outside of the ER or urgent care in a very long time. Also, this was my first time visiting a new doctor by myself so I approached the sign in sheet very timidly and I signed it and right away the lady behind the counter told me that she could sign me in.

The process began and she got out sheet after sheet after sheet of paperwork and I felt as if I had just gone back to school after missing a couple days and I was being given all my assignments. Then she said that she had to confirm some information and she started to talk but then a lady came up to sign in. The office worker then stopped talking but the lady signing in stood still and didn't move and so too the office worker didn't speak to me. Eventually the worker who was signing me in said, "Do you need help" to which the lady beside me responded, "Oh, no. I just wanted to stand here."

Several awkward seconds passed as I was staring at the soon to be worked on papers that would ask me more health information than I would know and eventually the lady that came up left and the office worker said, "I can't speak to you when another person is up here due to privacy rules." and as luck would have it another person came up making the conversation a jerky one of stop and go.

During this conversation, or at least when it was going, I was very agreeable. I wanted it over as fast as possible and I wanted to get that paperwork done as quickly as possible. I got my chance to start working on it, but just as I did I was called into the back and some quick vitals were taken and into the room I went. I sat down and was asked, "Why are you here today?" Simple enough question, right?

What seemed to be the easiest question quickly turned into a state of panic. I had a moment of, "I think therefore you should know" so I, at first, got mad that she asked this question because she should have already known because I knew. This took some processing time and I glanced over and saw the unfinished paperwork looming and I looked back to her and my mind was blank; I tried to talk but nothing happened. I wanted to say something, anything, but I kept shaking my head as if to say, "I know what I want to say but my body and mind just aren't playing well together right now."

I don't think I showed it on the outside but on the inside I was crying. I knew it was a simple question and I knew the answer... and that's the kicker! I knew I knew the answer but still I didn't know how to respond to her.

Thirty seconds had passed and I still was spinning my wheels going no where and she said, "Are you new here?" to which now I was trying to answer two questions and I still knew why I had gone to the first place and then I glanced back over at all those new patient documents I had to fill out and I just about took out my copay money and left. I tell you, I have never been closer in my life to just giving up and leaving without saying a word than I was right then and there. It was all too much.

She then asked a third question, "so since you are new here is this an initial visit then?" and quickly I responded with, "Yes, I think. Something like that. Yes, um, yeah." and that was that. She left, doctor came in, and in the end I don't think those papers got filled out 100%, but all in all this was a reminder that Asperger's is there. I've become rather good at avoiding situations like that, but once it presented itself I locked up. And what makes locking worse is when I'm aware it is happening because then I try to "think harder" and nothing good comes from that and the end situation is that which happened. Thankfully now I do have a doctor I can go see, but I wonder this; the next time I go will I have to fill out all that paperwork I left unfinished?

Monday, May 20, 2013

Video of The Best Day Ever

This video is from last Monday at the Indianapolis Motor Speedway and is of myself being the honorary starter for practice.


Friday, May 17, 2013

Answering the Caller

Going back to the radio show on Tuesday I did on WWKI I had a caller call in with a question regarding her son and the ability to talk to the doctor one-on-one and the inability to socialize in a school setting. I gave an answer, but I don't think I gave the perfect answer so I'm going to take this blog post and give a proper answer.

First, this is something that I have struggled with as well. If anyone ever gets me into a one-on-one conversation I usually am rather able at having the conversation without issues. Should another person join the conversation the issues will mount as I have a harder time being able to process all that is going on. Should yet another person join I will become almost unable to chime in with any of my thoughts and anything more than three people in a conversation and I will have a hard time uttering a single word. Since this is true a one-on-one conversation with a doctor is easy where as anything in the school setting would be much trickier.

Also, speaking to a doctor is a much narrow range of communication. What I mean by that is that a conversation with a doctor is usually going to be just heavy in facts. On top of that, after a while, the conversations can become a routine. A doctor may ask the same questions so it becomes almost scripted. In a school/group setting this is harder to achieve with the range of conversation being much greater and a routine much harder to achieve.

Yet another aspect is timing. This is one thing I still struggle with and timing is so critical. What timing is, by my definition, is the timing of when to speak. When talking to a doctor the doctor will speak, ask a question, and wait for a response. The doctor may also give ample time for processing. Others though, especially in a group setting, will have a much more fluid and ever changing conversation. To speak, one must be somewhat aggressive in getting their words out much like trying to navigate a busy four-way stop situation where drivers aren't really obeying the protocols. I will wait for that right moment when no one is speaking, but each time I get ready to speak someone else beats me to it.

All in all these issues can be rather confusing for a doctor because, should the doctor only get the story from what they are seeing in front of them right then and there, it may be hard for the doctor to get the complete picture. Let's take myself at a young age; I could talk to the doctor just fine. I could talk about the weather, or body temperature, and I was ahead of my years. Why would the doctor think there was anything wrong? This is a rather common story! I'm not sure what future book I have this in, but I do call it a "problem with Kansas" as, if a person only sees us in Kansas then it will be practically impossible for that person to think of us as having any challenges at all.

I hope I answered this better than I did on the air. Perhaps my answer was decent on the air, but I feel this is a much better painter picture than what I gave on Tuesday.

Thursday, May 16, 2013

Radio: Then and Now

On Tuesday I was in Kokomo, Indiana and was once again on WWKI's morning show, "Male Call." (You can listen to the broadcast by finding May 14th on their podcast page) I was originally on that show in April of 2012 while on my nationwide tour and it is amazing the difference a year can make.

Last year I was beyond nervous as I got to the studio and when the show started the only thing I could think of was, "don't say the wrong thing... don't say the wrong thing." I believe the end result on the air was fine, but the internal anxiety I felt was great.

Having the experience I had last year I felt much more comfortable than I did the year prior; I wasn't shaking, I didn't feel ill to my stomach, and the nerves weren't causing me to yawn every 15 seconds leading up to being on the air.

With not being so nervous I actually enjoyed the lead up to being on the air and once the program began I felt much more at ease. I wish there were an easy way to compare the two, but I know, from where I sat, it was much better.

On my drive home on Tuesday, and my drive to and from Shelbina, Missouri yesterday (by the way, the students at South Shelby Middle School were AWESOME!) I thought about the interviews, then and now, and there's much more to this than just having done it once.

Yes, there's more to this than meets the eye and what I mean by that is that I've been doing a lot of things that aren't usually what I do. I've tried many new foods this year and I'm feeling more and more confident presenting. Is it the confidence in presenting that has bubbled over into other aspects of my life? Is it the confidence from traveling as much as I have and being much more sufficient in doing things on my own? Perhaps a combination?

Whatever is going on I can feel the growth in the past year. I know if I have practice, or have done something once it is easier the 2nd time, but the difference in the way I felt at WWKI on Tuesday is much more than just having a little bit more experience.

As for now I will continue to wonder about what the difference is and I will have my time to think about it as I have a presentation in a bit then a 5 hour drive to Nashville for a USAC .25 Generation Next series race. Over 200 cars are registered and it should be a great weekend (or in the least I hope it goes better for me than it did last year!)

Tuesday, May 14, 2013

My Indy Experience

Throwing the green yesterday was the biggest honor of my life! I hope to have a video of it sometime this week, but here is a photo that Chris Jones of Indianapolis Motor Speedway took. Also, IMS wrote a story about me and it can be read at http://www.indianapolismotorspeedway.com/redbullgp/news/show/52156-aspiring-flagman-lives-his-dream-at-ims-raises-autism-awareness/

Monday, May 13, 2013

"Are you that boy that waives that flag on that rock?" The Story of My First Flagstand

After you watch this and you want the story of the flag click the video within this post.




And here is the link for the live video of practice http://www.livestream.com/indycar The start time is noon US Central time. I'd think the stream would be up beforehand.

Friday, May 10, 2013

The Green Flag of Flagging

I have been super excited this week for this upcoming Monday when I am the honorary starter for the day of practice for the Indy 500. I've been thinking about what to write over and over and the only thing I can think of was what I wrote back in 2010. This was originally part of part 1 of my "Schumi and me" blogs, but I felt it right to run it again.
 
Also, another quick note. Yesterday as I drove home from my SEMO tour I drove past the 2nd track that I flagged at here in Saint Louis and I thought back to Frankie, who is mentioned in the blog, and I was so thankful for the chance he gave me to be his assistant... Well, I'll add more at the end...  
 
My love of flags started early. I grew up in Indianapolis in a home that was just over a mile from the Indianapolis Motor Speedway. My dad was a pastor in Indy so going to the Indianapolis 500 was out of the question since Sundays were his primary work day.


My grandmother in Oklahoma City would always tape the race for me in and then send me the tape seeing that the race used to be on a long blackout in the Indy market. My first memory of the race was watching the 1987 race on tape. While most kids probably would want to watch the entire race, I kept watching the start over and over and over again. I think this could be one of the earliest signs that I remember that was a warning sign that I was on the autism spectrum.


But, why you ask, would I watch the start over and over again? It had nothing to do with the speed and danger of 33 colorful Indycars lined up in 11 rows of 3 all vying for position on the start. Nope. What I wanted to see was Duane Sweeney's twin green flags he waived to signify the start of he race.


I think it was a sensory thing and I loved it. I became obsessed with all things "flags." The colors moving about in the air was nothing short of bliss. Don't get me wrong, I loved the actual race, but I truly believe the initial hook for me was the flags.


In 1988 my dad took me to one of the many practice days at the Speedway and bought me a small souvenir checkered flag. I stood on the infield grandstand and waived that flag for the entire time I was there. I imagined what it must be like to be the actual flagman; the perfection needed and, of course, the grip (dropping a flag, I understood, was quite frowned upon!).


My dad's church was near the track, and I guess attendance was usually low on that magnificent weekend, but in 1989 I went to my first 500, and it was one of the biggest disappointments of my life. My favorite driver at the time was Al Unser Jr. and he and Emerson Fittipaldi got into a wreck that sent Jr. into the wall and Fittipaldi won the race. As mad as that made me it was not the reason I was disappointed. What made me mad was that we sat at the entry to turn two and I could not see the flagman.


Later in 89 my dad bought me my first real set of flags. They weren't big, and the sticks were fragile, but they were perfect for a six-year old. Those flags and I could not be separated on race days (or any other day for that matter) because I would flag along from home. My goal was to emulate the flagman that was actually at the race and it took some time and practice, but I became good at emulating the flagman, as well as hitting people with my flags as they walked by me. I couldn't help it, if the yellow flag needed to be waived, it had to be waived. (sorry mom!)


One of the biggest events in my life happened in 1990. Like I said, I loved the start of the Indy 500 because of the twin greens waived by Duane Sweeney. While Al Unser Jr. was my favorite driver, he wasn't my favorite part of the 500 as that title fell to Mr. Sweeney. My dad had a member of his congregation, Joan Petrie, who worked at USAC (the former sanctioning body of the Indy 500) and he asked he if she could get Duane's autograph for me.



On Thanksgiving morning she called my dad and said for him to, "Come over right away!" My dad thought it was an emergency so he rushed over and while it wasn't an emergency, it was major. She gave my dad an autographed picture of Duane (much like the photo to the right. This one wasn't the one I received, but it was the same photo. Change "John" to "Erin" and it would be the one I got) and then she said, "Wait a sec pastor, I have one more thing.

I wish I would have been there for that line of "one more thing" because I have heard my dad recount the story at least 1,001 times, but what happened next set me on a course for flagging stardom (if there is such a thing). Yes, what happened next was she turned the corner and got an item, came back into the room and gave my dad this:




This just wasn't a souvenir flag, or a set bought at the Speedway Museum. This was the real deal, his personal checkered flag. His wife made all his flags and when Duane heard about me wanting his autograph because I was a "BIG fan" he told her he was giving me this flag. She said she didn't want to make another one, but he insisted because, "He didn't have many fans." Since I received this flag I've only let winners of the race, and other key figures such as Donald Davidson, the track historian, who truly has one of the best memories on the planet!

In 1993 we moved to Saint Louis and in 1995 I started racing go-karts at the Saint Louis Karting Association. The story of my first race is recounted perfectly in my book so I won't talk about that, but what I will talk about is that I instantly hated the grease of racing. I have a minor sensory issue with dirt and grime on my hands and, sadly, engines don't change their own oil.


I suffered through half a year of oil and late in the season the club flagman at the time, Frankie, was getting old and some of the flags displayed did not match the situation. A 12 lap race once was 7, and instead of the checkered flag once the race ended on a blue (that means a faster kart is about to lap you). Seizing the chance I volunteered myself to be the assistant and keep track of the laps and hand Frankie the correct flag.

I was always older than my age so no one thought twice of me, a 12 year old, being be put into that position. By the following year the club's race director gave me the headset (we had a limited quantity) and you can see this in the picture. This is me and Frankie in one of the many breaks during the day and I must have been through with my races because my suit is no longer on. My race day was busy because when it was time for my race I would rush across the track to get my helmet and gloves on, and after my race I would rush back. I was a truly dedicated youngster!




On a scorching summer day in early August of 1996 the club told Frankie we "weren't racing due to heat" because of the troubles he had been having. They asked if I was ready to be the sole flagman. I had been ready since I first saw Duane Sweeney waive those twin flags back in 1987!

That first race was one of the biggest honors of my life. I knew that most places would not let a 13 year old flag a race. The responsibilities are great and there is no room for error. Mistakes can cause an accident, an injury and all movements must be precise. I was not yet diagnosed with Asperger's syndrome, but my mind loves the art of perfection and that first race went smoothly.

The following race I went back to my role as assistant and I was a little down. Frankie, not knowing I had already flagged a race weekend, asked me if I wanted to trade off races. He would do one, then I would do the other. He thought I was ready, and I took this as a sign that he was ready to step down. I think he was 80 years old and had been flagging races pre WW2!

He didn't step down and was eventually forced into retirement in the middle of the 97 season. At that time, at the age of 14, I was named chief started of the Saint Louis Karting Association and I held that position until 2008!

I am grateful I had flagging. When I was diagnosed with Asperger's syndrome in 2003 I went into a state of isolation. The only thing I really had was looking forward to the Sunday's that had a race. I had quit racing karts a couple months before I was diagnosed because it looked like I was going to make it as a professional driver. That never happened, but I had the flagging and I don't know where I would be without it.

In the original post I continued on and this was the building block to me becoming the flagman of the world's largest karting event, The SKUSA SuperNationals. However, thinking back to Frankie he could have said no to me as his assistant. The experience working with him has set everything in motion just like the flag Mr. Sweeney gave me. One thing about Frankie, I never knew his last name and don't know what became of him. This saddens me today because on that first day that I wore a headset and became part of a staff at a race track I could never have imagined I'd make it to the Indianapolis Motor Speedway. Yes, I know this is just an honorary position and it's just one flag, but this one moment has been 23 years in the making and come Monday I can assure you that it will be one of the best moments of my life. It's going to be hard to hold back the emotions as this one, singular green flag is much more than that; it's a tribute to Duane Sweeney, to Frankie, to SKUSA, to USAC, and to each and every person and organization that has given me a chance in my life.

Thursday, May 9, 2013

A Puzzling Statement

I had another two presentations at schools yesterday and I've noticed there's a statement I make that always gets many different reactions. For those that just see me in a presentation it is probably quite puzzling as I say, "Outside this realm of a presentation I am one of the shyest, quietest, most reserved individuals you will ever come across."

There are many reactions to that line. One of them is a look of one who is skeptical. And who can blame them? I can present with a profound confidence and am 100% comfortable in the skin I'm in and yet I tell them at the same time I'm everything but that. The second look is a sense of trying to understand what I just said. The third is my favorite; a small smile. It may be a small smile but it is an important one for sure. I make the point of saying that when I was in school I was the worst public speaker in the world and yet, here I am today. That smile tells me something big and that is there's a droplet of hope that has been churned.

Of course, I could be wrong about all of this because I am not the best at determining what facial expressions mean, but I feel I might just be right about the reaction to my puzzling statement.

Tuesday, May 7, 2013

A Day I've Waited Forever For

I announced this on my Facebook page yesterday and I don't think I've ever been more excited about anything in my life than I am for what is to take place on Monday.

This event has been a year in the making and started with this video blog from last year



After I finished making the video I was told, "Keep in touch, we may just want to have you be an honorary starter for a day of practice next year." And guess what... They did!

On Monday, May 13th I will be the honorary starter for the third day of practice for the 97th running of the Indianapolis 500.

Being the honorary starter may not seem like much. In fact, I won't even be in the flag stand (I will however be on a platform on the pit wall very much like Pat Vidan use to have) and I have just one flag to waive and that is the green. I waive flags all the time and I can't even guess how many times I waive the green, yellow, white, and checkereds on a typical USAC .25 or SKUSA weekend. This isn't a typical weekend though. I get the chance to waive a flag at racing's most hallowed grounds.

A book I used to read and reread written by the late Tom Carnegie when I was younger, Indy 500: More Than a Race had many pictures of both Pat Vidan and Duane Sweeney who was the chief starter of The 500 who gave me the checkered flag in the video. I spent many, and I do mean many, days and nights dreaming of the day I could be at the track, in the month of May, with a flag in hand. For some people that get the chance to be an honorary starter I'm sure it's a rush; and why wouldn't it be? To be track level with the flag that starts the day is nothing short of amazing. For myself, though, this is going to be a moment that will be a lifelong dream fulfilled. It will be a singular moment that will never be forgotten and may never be duplicated. I have no idea what to expect when something has been long been dreamt about comes true. That's what this is for me. This isn't just one flag, this is playing a very minor part in what I consider to be one of the world's greatest sporting events. This is something that, even at the age of four when my dad bought me a novelty checkered flag on a day of practice I thought of. Oh, I did a number on that flag as each car passed at over 200mph and I loved thinking that maybe someday I would be the one with the flags that matter. Come Monday, for one green flag in the morning, I will be.

Monday, May 6, 2013

"Why are you here?"

I just got presenting at a school here in Van Buren, Missouri. I had, perhaps, the warmest reception to a presentation ever as a group of students chatted with me for half an hour after the first of my two presentations.

My 2nd presentation was to the 4th and 5th grade and I had one of my more interesting questions. The question was, "Why are you here? I mean, there are far bigger schools and cities out there." This question allowed me to use one of my mission statements and I was more than happy to answer. I said something along the lines of:

Yes, I know there are bigger schools, and cities out there and just five months ago I spoke to a school in Chesterton, Indiana that had 1,100 students in one presentation, but autism awareness isn't just about big cities and big schools as it is needed everywhere. Every person on the autism spectrum deserves understanding and it doesn't matter if it's in a big city like Saint Louis or a town like Van Buren. The need is everywhere and I want to be in as many places as I can be in!

I don't get caught up in giving answers all that often, but this question has hung with me for the few hours that have passed. I know I'm proud of my numbers that I've spoken to, now over 24,000, but while I, or anyone for that matter, could bask in the size of the number the needs aren't limited to groups of 1,000. The need isn't just in cities, but the need for awareness and understanding is everywhere. It doesn't matter where as each person reached is the most important person ever reached. I firmly believe this and this is what drives me and I'm so thankful for days like today in which I am able to spread the word of understanding.

Friday, May 3, 2013

The Resistance

There's a battle that is about to play out. I've met some of those that will be involved and I don't think they are going to waiver in their steadfast belief. There's no telling how long this battle will play out, but it is one that will be fought with many people that will form a resistance of sorts.

This battle I talk about has nothing to do with the military, sports, or territory. To put simply, this battle is over a name; Asperger's. It's been a question I have received at almost every presentation in April and that is, "What do you think of the changes in the DSM-V?" Each time I answered this question I got more and more conviction in it. First, I'll give you my answer:

What do I think? I can somewhat understand why they want to make the change with the deletion of Asperger Syndrome and clumping everything into mild, moderate, or severe autism. In a perfect world this would be a seamless transition and everything would work out just fine. However, this isn't a perfect world and so often the only frame of reference a doctor has is the movie Rain Man. I know, it sounds awful as it is 2013, but it is the truth. I also want to say this isn't a slam against the medical industry, but just one case is one case too many.

So since a doctor may not have the right frame of reference, when a family raises the question of, "is it autism?" if the child can talk and if grades aren't a problem for the age appropriate child, then what issue could there be?

While we know that autism is a spectrum, some do not. The word autism instantly brings about thoughts of the extreme. This is where the word Asperger's come in. It is the middle ground, if that is the right way to explain it. And not only is it the happy medium, but it is the word that is out there. I know it, you know it, most doctors now know it, and schools know it. It's been around as a diagnosis for almost 20 years and whereas when I got first diagnosed and barely anyone had heard of it now, well, now there are movies, books, television shows, and news specials which all in all have increased the awareness and understanding of it. And if we take that name away with the awareness we've worked endlessly to get I have to ask; what will be the result? Will a person like myself fall through the cracks? In a perfect world the words mild, moderate, and severe will be widely understood. But I fear, since it isn't a perfect world, it will take a long time.

This is where the battle comes in. At every presentation I gave in April I heard someone tell me afterwards to speak up more about it. These were all professionals in the field and many of them, not all, but many of them have said that they intend of rejecting the DSM-V. If I only heard this once I wouldn't think anything of it, but obviously there is a resistance.

There is so much on the line here. This is more than a name. I'm not one who is caught up in the name and if the original name was Apple Orange Citrus Neptune disorder I wouldn't have cared. The thing I am caught up on is that the name Asperger's is established; it is known. With the changes does this mean the name dies? Will it become wrong to use it as if I'm talking about something that went out of style? Certainly, and I hope you see this, this is more than a name. This is why there is a resistance! This isn't about the name itself but rather near 20 years worth of work of awareness and understanding. Is rejecting the DSM-V the right thing? I'm not saying that, but at the same time we can't go back to square one! If we went want a world full of awareness and inclusion it takes awareness and more importantly understanding. If professionals are having a hard time understanding the changes how can we expect the general public to grasp the changes?

The battle is about to begin and there's a resistance that seems to be in it for the long haul and I personally don't think we've heard the end of the name Asperger's.

Thursday, May 2, 2013

The Problem With Cake

It is widely known that those on the autism spectrum often have a hard time with figures of speech and the like. I personally don't have a horrible time at this, but there are a few saying out there that I have trouble with. However, when it comes to certain proverbs I have a horrible time and there has been one that I've heard for a long time but never thought of until last Friday.

I was sitting in the score tower at the quarter midget track at Napa Raceway outside Alburqurque when I got to thinking about the line, "You can't have your cake and eat it too." This line makes no sense on a literal level because if you were to have the cake wouldn't that entail you eating the cake? I mean, what good is cake unless you are going to eat it? Of course, if it's an awful flavor one wouldn't want it at all.

So you can't have the cake and eat it too. I struggled with this and it was the only thing my mind could think of because I was trying to find the logic in it which my mind was convinced there was none. And the more I thought about it the more it made no sense.

Minutes went by and I thought for a second that this might mean that, once you eat the cake it is no longer there. But, what happens if you only eat on piece of a whole cake? The problem with proverbs and figures of speech is that we can view them visually and literally; there may be a valid point that is brought up in a proverb but it's going to be lost. A good point on that is, "don't look a gift horse in the mouth" as the last horse I looked in the mouth didn't end so well.

I eventually came to the conclusion that the flavor of the cake doesn't matter, how much cake doesn't matter, the only thing that matters if that you can't have your cake and eat it too. What this meant was I was right back to square one having no idea what it meant. So out came my phone and to the Internet I went to try and decipher the meaning of this cake.

The origin of this cake dates back to 1546! This was news to me because that was a long time ago and who knew they had cake back then? If you said that you did that's fine, but I had no idea. This little fact that meant nothing because cake now or cake then is irrelevant because why can't a person eat it and have it?

I finally read one line that made everything make sense and it wasn't that difficult. You see, the problem with cake is that it's complicated and can have multiple layers (Ha! That line just happened randomly. I swear.) whereas it would be so much easier to say what you mean and mean what you say because this line I read translated this cryptic saying by stating, "you can't have it both ways." Now was that overly difficult to explain? Why come up with some saying that can 1. make you hungry 2. makes no sense and 3. can be explained in a much simpler format? It makes no sense to me and this is the essence of why there is now a serious problem with proverbial cakes.

Wednesday, May 1, 2013

Bridge Concept

From the first time I sat down to write I never thought or claimed to have "the answers." My goal was always to explain the way the mind on the spectrum works and I've done this through analogies, metaphors, and my stories. It's been a while since I came up with a concept but during my 1,000 car drive on Sunday I got what could be one of my favorites.

Let's say you're driving on an interstate and up ahead, say, about five miles ahead is a bridge at the crest of a hill. Getting to that bridge is your destination and you drive with a obsessive focus never wavering on the sight of that bridge. You are so focused that the amazing canyons to your left are irrelevant. You are so focused that the winding stream with all sorts of animals drinking from it on your right isn't doesn't even cross your mind. And, you become so focused on your destination that you don't notice that the road is actually closed half-a-mile ahead because the only thing, the only thing that matters is that bridge that lies ahead and anything else just simply doesn't matter.

This is the way the mind with Asperger's may think. It's been a resounding story that I've heard this year and I was that way (okay, I still may be this way at times) when I was younger. The story I'm hearing most for parents is that their child is confused as to why they need to learn so much "irrelevant" stuff in school. "If one wants to be a computer programmer why must one learn history?" is one variation of what I've heard and that completely goes in line with driving towards that bridge with no regard for anything else because the only thing that matters is the destination.

The way this plays out in life can be positive but also it can be highly negative. I would say that this bridge/goal and Kansas (the main concept of my book) would often be close if not the same and since "if you were paralyzed in every state except Kansas, where would you want to live?" is true, that then means this concept of getting to the bridge is the only thing that matters. This can create an enormous drive to reach one's goal, but this too can mean that this drive will create a blindness to everything else. If a person only looks far into the distance one will miss the hurdles of today and be fully unprepared once and if they arrive at the destination.

I hope this has made sense. If you haven't lived life with having one goal and everything else is simply irrelevant I don't know if this driving metaphor can fully be understood. For most people the canyons, streams, and road outages of life are registered and dealt with. For us on the autism spectrum, however, we can become blind to everything except our goal. This sometimes may make us seem arrogant, aloof, or rude but for us we have no idea this is how we are coming across because we are just on our way to the bridge off in the distance. So you can tell me about that canyon, you can tell me about all the animals that were playing in that stream, and you can warn me about the hazards that lie between me and my goal but what does it matter? I'm on my way and the only thing that matters is that I reach the goal.