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Showing posts with label New York City. Show all posts
Showing posts with label New York City. Show all posts

Tuesday, June 29, 2010

A Harsh Reminder

Yesterday morning I wrote "Positional Warfare" not realizing that I would experience this in the fullest just 12 hours later. It was harsh, and sudden and made me realize anew the potential agony and sadness of being on the spectrum. This is that story...

Yesterday was the 1st annual TouchPoint Autism Services Golf Tournament. Dan Kelley (the father of the family that is in the video that I have linked to on the right bar) and the rest of the TouchPoint golf planning committee put on a fantastic event at the Glen Echo Golf Club which is the only golf course in the United States to host an Olympic event.

The format was a scramble and I was playing on a foursome. I arrived early, as usual, and didn't exactly know where to go once I was there. Once I saw someone I knew I simply followed them and then I was at the check-in table. Having never done a golf outing like this I had no idea what to do, and signing in was difficult because I didn't know what was coming. In the end all I had to do was give my home address, but my anxiety level was pegged to the fullest. Now, what makes this interesting, is that I have signed in hundreds of times at race tracks, but I know the drill there and this was new which meant unknown and the unknown is feared.

After barely surviving, ahem, after signing in I loitered about for a good 10 minutes and I truly didn't know what to do. I wondered if I should help out, but I would be clueless as to what to do or much less whom to help. Eventually I saw someone whom I've talked to many times in the past and then found out I was playing in his foursome and thankfully, truly honestly thankfully, he asked if I wanted to hit the range to practice.

Like a light switch being flipped from off to on I came alive. I talked about my "Great Sunglasses Experiment" and we bounced ideas back and forth. We talked about golf and the challenges of hitting the fairway (or at least my challenge to hit the fairway) and the love of the game. I made the comment that my golf game, "Is very much like Asperger's in a way. I'm either fully on or fully off." If my driving range time was any indication the day was going to be a "fully off" type of day.

As 1PM came the tournament started and I felt at ease with my team. I have spent time talking to two of them so adding a third person I didn't know wasn't that difficult. It helped that his sense of humor was much like mine so I was free from the stresses I had when I had signed in.

The story here isn't the round of golf, but I did hit a few good shots. No, the story here is about the social dynamic. During the round I was able to talk, and able to make witty comments. I wasn't fully there, but I was close to being in my presenter mode. Speaking just came naturally to me and there wasn't a second thought of what to say. Usually I only have this when giving a presentation, but during those 18 holes I was there.

After the round there was a dinner and this is where my story takes a sad turn. The tables were for eight which meant that it was our foursome and another team. As I sat down the other people introduced themselves and just like that light switch that had been turned on instantly turned off. Eye contact was impossible and words could not be found. In watching the room and everyone else there I could see that they didn't struggle like I was struggling. I was in a room full of people but I was alone.

I didn't want to be alone. I so badly wanted to say something, anything, but I never could find the right time to speak. As the noise of the room increased it became harder and harder for me to hear the words of the people at the table I was at. All the noise merged into one never ending string of words.

I'm afraid of how uncomfortable I looked because I was in the ultimate "Positional Warfare". Come to think of it though, I think I was mimicking a statue because there was little movement in my body.

With each second that passed I found it harder and harder to jump in. I didn't know what to do and simply wanted to cry. I can't be more honest about that. After feeling the freedom of being able to give presentations in rooms of 80 or more, and being unable to converse with just seven others made me sad. I often will forget that I am on the autism spectrum, but an event like this will remind me and it hurts, I can't lie.

After dinner, former NHL player and now NHL commentator, Joe Micheletti, emceed a live auction. There was only supposed to be one item, but he decided to give donate 2 New York Rangers tickets and a chance to meet him in the booth at that game. More money was raised because of this and I was moved. After the dinner I wanted to give him a book of mine to show my appreciation for that great deed, but I was still paralyzed.

I paced. I walked to the restroom with reason. I came back and sat back down. He was just seated one table over, but I couldn't. I still had not uttered a word for over an hour and as much as I wanted to just walk to my car and grab a book I walked to my car and drove off.

On my way home I felt like a failure: this regardless of the fact that I have had such a warm response from my presentations. I was sure that feeling would pass, but once again it was a reminder of the mind set a person on the spectrum can have and that is, "whatever is now is forever." I hope if you know a person on the spectrum you can understand the power of that line.

As I got home I was still angry with myself. I stormed through the house and opened my door and was then confused as to the small white box that laid upon my chair. I didn't remember buying anything on Ebay so I didn't think much of it and went on to check my e-mail. I looked at the small box again and I decided to open it.

Remember how I said "whatever is now, is forever"? As I opened the box my mind rushed with ideas because there they were, my sunglasses! They weren't scheduled to arrive until the 5th of July but they arrived. If you are wondering "What in the world is with the sunglasses?" you should read http://lifeontheothersideofthewall.blogspot.com/2010/06/coming-in-july-great-sunglass.html.

I won't start tomorrow as I think it will be more fitting to start on the 4th of July. Independence Day. A fitting name for what I hope to gain in terms of eye contact.

Today may have been a harsh reminder of the challenges that I, and many other people on the spectrum face. I was, as usual, asking "why me?" on my way home and again I realize it's me because of what you are reading right now. For family, or friends, it is crucial that they understand what a person on the spectrum is going through. Through my up and down up day I hope I have given a unique perspective to the hazards of a social setting like a dinner that I was at. If I have, it made everything worth it.

Tuesday, June 8, 2010

One Year Later: Dreams Do Come True

First, if you haven't read the article on how raising awareness became my passion you should. It can be read here http://lifeontheothersideofthewall.blogspot.com/2010/04/autism-awareness-month-and-how.html.

That was one year ago and last year I knew what I wanted, but had no direction. It isn't so much to want to raise awareness and to want to help, but one must have the platform to do so. I didn't have a platform nor did I have direction. All I knew was what I wanted, but had no idea how to do so.

My drive home from New York City last year was a very sad drive. Being in New York City at Autism Speaks made me feel as if I accomplished something, or rather a part of something. Leaving there, one year ago, I felt like I was coming back home to nothingness. My passion was set, but what to do about it? What could I do in Missouri when I discovered my passion in an office in Manhattan?

Through some odd twists of fate I did some consultant work at Touch Point Autism Services, and at the time I thought this would be a one and done gig. As you've read though through my previous blog entries, hopefully, you know that I am now full time at Touch Point.

When I started full time I did not know how much of an impact I could have. It's impossible for me to see what could be so when I started I was just hoping that I could raise awareness and understanding.

Last year when I left Manhattan I was thinking big. I may have been blinded by the big city because I was back to my "go big or go home" mentality. The past couple weeks have changed me in a big way and through this change I have realized that big starts in one's own backyard.

I'm writing this today in Joplin, Missouri and tonight I have another presentation. I have seen more of Missouri on this extended road trip then I think I have while living in this state for 17 years. Before I only saw what was on I-70, and I-44 and when one just stays on the interstate I believe one can lose the sense of community and humanity that exists outside the interstate.

What I am getting at is, for one thing, I love this traveling, but secondly the people I have encountered at my presentations are people that if I had just "gone big" I may not have been able to make a difference. Don't get me wrong, I still want large opportunities, but I also want to go to as many small towns as possible because there is need there. Autism isn't just located in the metro areas of the world, it is everywhere and the response I get, even at a presentation of just 16 people, is of the utmost thanks.

I wish I could comprehend the magnitude of a comment such as, "Thank you, I now understand my son a little bit more." or, "Thank you so much, seeing you and hearing you speak gives me hope." Perhaps if I did fully understand it I would be unable to get such results, but regardless I know what I am doing is important.

One year ago I could never have thought this would be reality. When I wrote the chapter, "The Fourth Wall" in my book I envisioned that I would get to travel around and talk about that concept. I dreamt of sleeping in hotel rooms and driving many miles, but it was only a dream and I quickly thought back to reality and the fact that something like that could never happen to me. Boy, was I wrong!

I don't want to keep saying I am having the time of my life, but from where I was to where I am now I feel like I must. Traveling and being on the road is my dream. This isn't relocation theory, but it's close. I feel alive, and I get to raise awareness and understanding at the same time so whatever I was dreaming, or envisioning when I drove back from Autism Speaks I think my dreams came up short as this is the time of my life.

Monday, June 7, 2010

A Changing Commercial World

I have found in the past 10 years or so a real change in the goods market. This entry isn't an essay on trending fads in the goods industry, but rather an unique look at how items are being changed to meet a new market.

When I was growing up everything in the stores were always the same. I could be wrong on this, but "limited editions" and "new..." were never used. From my observances it was the late 90's when things started getting crazy with new items based on old favorites.

When talking about this I really think about the cereal aisle. As a young child my favorite cereal was something along the lines of "Circus". Eventually it was discontinued and this was devastating for me as there was no other cereal. I would eventually have to adapt, which was hard, but then I got into the habit of eating Frosted Wheats. I don't remember the year, but eventually the Frosted Mini-Wheat would come about, and now I ask, do they still have the big frosted wheats anymore?

Let's take a look at the Mini Wheat market now. After years of nothing new, they now have multiple flavors be it Blueberry, Strawberry, or Cinnamon. I am amazed at the progress from status quo to now having to change so often.

I hate this new market! I liked it how it used to be when things were things and those things were never reinvented. Now go into a store and see how many items, on their packaging, say, "New look, same great taste!" What does that mean? Why do they feel the need to change their image every other week? How am I to cope with it all?

What led to this change? I like things the way they were, but do the masses now like constant change?

Not all new items were bad, I can remember the first time that the green colored Starburst candy came out, or at least the first time I was exposed to it, and it was amazing. After yeas of yellow packaging I was in heaven. So maybe all this change isn't 100% bad.

I am writing this late at night after two full days of flagging in the sun so maybe I am making no sense at all, but I am curious on this. Has this constant change of goods and new foods always been like this and I just didn't notice? And, are you annoyed and that empty statement of "new look, same great taste?" as I am?

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I am on the road again tomorrow headed to Joplin. Tuesday will mark a big day for me as it will mark one year since my life changing trip to New York City. I have told that story twice on here, but I will think of something special to write that will be new and fresh.

Monday, May 24, 2010

The New Journey Begins

Last night the television show Lost ended. I covered this somewhat on Friday on how I was sad about it and now it is over.

Today I embark on a 20 day journey. I will be headed to Fort Leonard Wood to do a presentation followed by two presentations in Springfield over the next two days. With each day I feel more vigor, more passion, and more dedication to share my experience of being on the autism spectrum and to raise awareness any way I can.

As I said on Friday, my first experience with Lost was a commercial during the 2004 Indy 500. What I left out was what happened during that 2004 Indy 500. The record books will show that Buddy Rice won in a rain shortened event. What I will remember most is that I survived it. The rains that came in the end weren't a drizzle, but a severe storm that was producing tornadoes. Over the loud speaker, Dave Calabro, the track PA announcer shouted, "Get to cover NOW! There is a tornado on the ground!" The skies were ominous and while the majority of people in attendance were rushing to their cars, my dad and I headed to the basement of the museum. Before that, I made a phone call.

My goal in my presentations is to raise awareness. I want people to know what people on the spectrum feel and sometimes we just don't know how to express it. I gave two presentations last Friday and with each presentation I feel stronger and more sure of myself.

After my presentations in Springfield I will be headed to Indianapolis to attend my 14th straight Indy 500. Each time I return to the Speedway since 2004 I look at the exact spot I made that phone call during the incoming storm. I honestly thought I was about to die, so I called Emily. If you saw the clouds you too would think that the worst was about to hit. The clouds were moving in and swirling downward and the intense lightning storm coming in from the West was something that I had never seen and haven't seen since.

My trip to Indy this time is my first since I wrote the last chapter of my 2nd book. Last year I went to the 500 alone for the first time. I then drove to Washington D.C., to Dover for the Autism Speaks 400, and then to Autism Speaks' home office in New York City. It was there that my life clicked. It was there that this passion exploded, to tell my story and my concepts to let families possibly understand why we do what we do.

I had tried to call Emily several times that month and got no answer. It had been five months since I broke up with her on Christmas via text message, but we still ate at Fortel's every Monday and bowled in the same league. To be honest, not much changed. After bowling concluded the first week in May the change occurred. No more did we eat each Monday and no more would we bowl together. On this Sunday, with the seemingly doomsday like storm moving in, she answered the phone.

This year a friend I have raced with over Xbox Live is joining me in Indy. We plan on playing golf on Thursday, going to Terre Haute for a Sprintcar race that night, going to Carb Day at the Speedway on Friday as well as the Silver Crown race at the fairgrounds that night, then the Night Before the 500 midget race at ORP, then the 500 on Sunday. On top of that, I start training with USAC and will be listening in on the radio at the sprintcar, silver crown, and midget race to start my way towards flagging for USAC. It's going to be a memorable weekend!

My seats this year for the 500 will be almost right across from where I was when Emily answered the phone and very inquisitively answered, "hello?" Her voice was different, and I wasted no time in asking if she had watched the race, which she hadn't, and then I said there was a nasty storm coming in and it did not look good. She seemed somewhat concerned, although I don't know if she was or if she was just humoring me, but regardless I said "I love you" to her for what would be the last time.

Once this upcoming weekend is over I head right back down to the Southwest part of the state to continue giving presentations. I will have about 10 hours at home on Memorial Day, but Tuesday morning it's right back down I-44 and my elation on my schedule can't be stated enough.

My relationship started with Emily reached a point of no return once I had my diagnosis and it was partly due to me. I didn't know how to handle it, and further more I thought I was alone. I thought there was no hope and I wish I knew what I knew now. What I know now is what drives me and what fuels my ability to give my presentations with such a clarity.

It is fitting that Lost ended last night because my first encounter with it was the same day that Emily was lost for good. She didn't return the "I love you" and I knew it was over. The depression that was already setting in was in at full force. Then, halfway through Lost's first season, I started to write.

I feel as if this multi-city tour and this Indy 500 is a turning point in my life. I want to be out there; I want to spread my experiences. For those who have young ones I can say early intervention is beyond valuable, and for those who possibly know older ones, it is much easier to deal with life when the hardships of life have a name and isn't due to lack of skill or lack of being able to be liked.

That fateful day in 2004 at the Indianapolis Motor Speedway has been something I have not thought of in a long while. It still hurt up until Lost concluded. I still felt the pain in the lack of a return to "I love you," and I hated that, but today I embrace it. I realized that all the events in my life were set in motion by radical events, and today I go out more dedicated than ever to do anything and everything I can to tell the world what it is like. Lost was an amazing television series in terms of telling a story, but now it is over. For me though, my story is just beginning, and the next chapter begins today.

Friday, April 2, 2010

Autism Awareness Month and How Awareness Became My Passion

April is Autism Awareness Month and the value of awareness can't be stated enough. Last year I had a strange journey to discover that my passion in life is to raise awareness.

Raising awareness wasn't always a priority. In fact, before I was diagnosed in 2003, I had not even really thought of the autism spectrum as anything worth thinking about. Of course all that changed once I was diagnosed.

After the diagnosis I went into a deep depression. My life, as I knew it, seemed to cease. I lost the girlfriend I had at the time and my first passion and dream, driving race cars, was becoming harder to achieve.

A year into this depression a funny thing happened. It was late at night and my depression was at its deepest point., when I sat down and started to write. I wrote about the relationship I lost and broke it down into why my behaviors were the way they were. The next night I wrote on a different relationship that had fallen apart in spectacular fashion.

Night after night I wrote a chapter on different aspects of my life. I had no intention of writing a book, but after about 3 months of writing I started to ponder if it was good enough. My dad had been sending my writings to a lady at Autism Speaks who was reading as I was going along and she had told my dad that my writings were some of the most important, eye opening first hand accounts of Asperger's.

I started writing in 2005 and my book, Finding Kansas, was released in November of 2008. I must admit that when it was released I was only anxious on what the sales meant for me. Just as my life changed when I was diagnosed, my life would take a turn in 2009.

I had my first book signing at a Barnes & Noble here in my hometown of Saint Louis. During the signing there were 2 sets of parents that came up, in tears, saying that their school district and doctor didn't understand autism. This may sound cold of me, but at the time I was simply thinking that these parents were a guaranteed book sale. A classic case of lack of empathy, I know.

In the next three months I had five more signings and at each one the story was told to me about the lack of understanding. One parent was told, "Don't worry about autism. He'll grow out of it by age 16, they ALL do." Still, I was unmoved.

My dad kept the lines of communication open with Autism Speaks and they sent me two tickets to the NASCAR Autism Speaks 400 held in Dover, Delaware. After the race I was going to drive up to New York City and go to Autism Speaks and meet the lady who first said my writings had merit.

During the race I began to truly think about what all those parent had said to me at my book signings. Above the roar of 43, 800hp engines, I began to understand just how wrong, and almost criminal, it is for parents' fears to be cast aside. The quote from that one doctor roared around in my head faster and louder than any of the cars that day.

The following day I drove to New York City to meet with the lady. We talked for a long while and she asked me if I was still passionate about auto racing. I gave a reply that was more important than when I was given the news of my diagnosis when I said, "Yes, I still would like to race, but it is no longer the priority. Yesterday, Jimmie Johnson won the NASCAR race, but how many lives did he change? How many families' lives were improved because of his victory? I had the talent to win, but life has a funny way of working out. I'm in a new race now, a race to raise awareness!"

Since that day in New York I have given radio interviews and have been more vocal on raising awareness. I started a job at Touch Point Autism Services as their Community Education Specialist to specifically raise awareness and promote early diagnosis and early intervention.

With this month as Autism Awareness Month there is no better time to spread the word. No parent should ever be told that autism will simply, "go away". Whereas before my life was about me, whether it was trying to race or trying to sell one book, now it is to try and educate anyone and everyone on what life is like on the spectrum and that there are therapies and interventions that work wonders.

So, this April is my first Autism Awareness Month that I know what my passion truly is. I guess you could say that, for me, the race is on.