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johnny's blog: "john"

created on 10/17/2006  |  http://fubar.com/john/b14864

Lights, Camera, Autism!!!

It is amazing how a little blinking red light can cause such turmoil inside me. I hate those stinking red lights...they turn me to stone. A couple months ago I blogged about some of my historic failures that have shaped me. I wrote how now in hindsight I am glad to have had those disasters in my life because I have learned as much in defeat then I have from success. Well I am hoping I am going to have the similar hindsight regarding something I completely screwed up just recently... August 8th, 2006 Early in the week while I was at the Death Cab For Cutie concert in Denver my wife called me and told me that I had received a pretty sweet phone call. I was being asked by a group of guys I had worked with before to help again. I was to play a part in a scene tomorrow night for their movie they had furiously been working on all summer. I was not sure at the time if I really wanted to do it. I knew I would be coming home very late and I would have worked all day. I might be just too tired to do it. My tune changed quickly as the next morning I woke up and decided that I should do it because how often am I asked be in a movie? When I talked to director later that day I told them that I would run over and help them out. August 9th, 2006 After working all day I headed over to the shoot later that evening. I received my lines for the scene and I immediately began to work on them. One thing that I have been pretty good at over my time in Ozymandian Theater is learning lines fairly quickly so I was not too worried about it. In this scene I was simply playing a TV reporter who was doing a live remote. I had about twenty minutes to memorize my paragraph and I used the time wisely. I had them down..absolutly..no question about it. So when I was asked if I was ready I said quite confidently that I was. As they started setting the lighting and the logistics for the scene I closed my eyes and went through my usually ego-boosting I do before I do any kind of performance. "I can do this. I can do this. I can do this." my inner John muttered. Like I said I have done a couple of little movies in the past. One movie I had quite a few lines and spent an entire summer and fall shooting it...the other film (which was with actually with the same group I was working with this time) was very small. So I thought I was pretty comfortable in front of the lens. I stood in under the eye of the camera 110% confident in knowing what my lines were and totally at ease with being filmed. It was go time...it was time for me to be a kick butt TV reporter...no problem! Except unfortunately there became a problem that came as soon as the director called "Action!" With that camera sprung to life with a low whirling sound and that haunting red light that pulsed in rhythm. My eyes caught the little blinking orb for a moment and it distracted me. I thought the light seemed a bit like H.A.L. from the movie "2001 A Space Odyssey"...it seemed kind of sinister. Something was certainly bothering me about that ugly red glow. I couldn't put my finger on it...but it made me a little queasy. It was a deja vu moment for me and I was not sure why. . This started my dialogue off to a bit of an awkward pause. Realizing this I grabbed a hold of my focus and opened my mouth for my fist few lines. As I was doing my best Anderson Cooper (from CNN) impersonation my gaze kept drifting back to this awful little light which was still coldly flashing. Then things went terribly wrong. I became so wrapped up on this little bulb that my train of thought jumped off the tracks and into a ravine which was inhabited by train-eating bears. I could not remember my next line. I could not even remember the context of what I was supposed to be saying. I told them I was sorry and if we could I would like to start over. I thought that I must be a little rusty at acting for film. After all this was the first time I had done this in years so I laughed it off an prepared to shoot again. I recall thinking that I would definitely have to blog about this. I was still wearing a beard of confidence...just too bad it was fake. "Action" Blink Blink Blink As it did before my brain froze. I could not even think of the first word of what I needed to say. We tried it once more... "Action" Blink Blink Blink Once again my lips were sealed. I could not remember anything...I did have a nice staring contest with the camera though...which I won. We tried it again. And again...and again. ...and again...to no success. The director suggested that I take a look at the script. I said in a very uptight manner that I was fine and I showed them by delivering all my lines perfectly with the camera off. Then the camera came on and I became dumbfounded again. I made it through about a third of my paragraph when I fell silent and placed a pained look upon my kisser. With each subsequent take my face became more and more pale. At this point I think the people who asked me to shoot this scene were wondering if they could find someone else to play my part. They were being very patient but I could tell that they were probably getting frustrated with my inability to speak. On the final take I made a deal with God. If I could just make it through this I would promise to never make fun of Jerry Fawell again. The director whose tone was much different now called out "Action" again. The light started visually beeping and I did my best to ignore it. I reached deep inside myself to push through the scene as best as I could. This was not about acting at this point. It was about survival. I think I got out about 70 % of what the script called for; which compared to my previous attempts were a much better result. We came to consensus to let the torture end. They said they had enough footage to use for what they wanted. I felt so terrible by now...I just wanted to leave and find some ice cream as soon as possible. I shook a few hands and sulked my way back to my car. Driving home I started getting that horrible feeling in the pit of my stomach. Have you ever had that? I knew that this was going to be something I was going to just torment myself with for years to come. They would for sure never ask me to help out again. I was embarrassed and angry at what had happened. "What did happen?" I asked myself as my sexy mini-van drove past the darkened KFC. What went wrong? I knew my lines. I was fine. Until the camera came on and that awful little light started to mock me. I wondered how it could have distracted me so much. Why did this twinkling eye in the sky do to make me feel so uncomfortable? It made no sense to me. Then like a bad krab salad from Subway it hit me no warning. I have had a run in with this red light before...this was not the first time I was turned into a fool by it. There was a reason I had a deja vu experience during that shoot. Flashback time kiddos: Denver, Co June 2003 I am sitting in a little white room with my wife waiting for the doctors to rejoin us. We had spent all day at the JFK Autism Center with my son Noah (he was at the time 3 years old) who had undergone a exhausting battery of tests to determine whether or not he was in fact autistic. We had come down to Denver because one of Noah's therapists had told us it would be a good idea to figure out what was going on with him. Up until this day he was just considered speech delayed but it was becoming more and more evident that something more was at play with him. I remember taking a moment to think about how we ended up getting to this point. I had a hard time ever really thinking that anything was wrong with him in the first place. Since he was my first child I assumed that allot of his behaviors were in fact appropriate for his age. Looking back now I cannot believe I was so dumb. My wife had always had concerns about things that were going on with our son...but I, to my discredit would continually poo-poo any of her worries. I somehow did not recognize as a problem that he would sometimes cry for no reason at all. I would consider his lack of eye contact with me as just him having his Daddy's shyness gene. I ignored the warning sign of his lack of communication. I would often say that boys matured slower then girls and that he was likely much farther ahead of me then when I was his age. I was smoking the gong of denial my friends. There were other signs as well. His tantrums would make Russell Crowe envious...during which he had the potential of hurting himself or someone else. Then there times that Noah would sometimes just run out the door and into the street. He was not afraid of anything like moving cars, large dogs, strangers, or places he could fall from. How in the name of Mel Gibsons mug shot could I have missed some of these red flags? He hated the feel of clothing on him...just to get him dressed some days was as if I was sticking his arms with crooked needles. Noah had no sense of hot or cold. I once found him outside on our deck naked standing in the snow with the temp under 10 below. We could never leave him alone for a moment because we were terrified of what he might do. All the while these things were going on I considered him as normal...maybe a bit unique...but normal. I still remember the day when my brain opened up the door to the harsh reality. This day happened about six months prior to our trip to the JFK Center in Denver. This day was one of the hardest of my life. We were at a going away party in Laramie, Wyoming for a good friend of ours who was moving away. My wife and I had brought Mr. Noah to this party because we knew there were going to be other kids his age there. It was a beautiful day for the party and everyone was outside. The adults were gathered around the BBQ grill and the children were all in the front yard sitting and playing with each other. All the children except for Noah that is. My boy was pretty social to a point...but he was more inclined to be away from people and be in his own little world. This is when despite my stupidity I began to figure it out. Once I had seen him next to other children his age I knew something was not clicking for him. The other parents did not have to stop their children from screaming for no reason. Nor did they have to worry about stopping their child from sticking his hand in the BBQ fire. Nobody elses three year old seemed to try and disrobe every two minutes. The light came on and I got it. My wife had been right all along. Noah needed some help. We left the party early. I was a gentle mix of heartbroken, angry, and scared all at once. However, I remember me and wife coming to the decision that we needed to go to war for him. Noah needed us to solve this mystery. It was in that decision to "go to war" we were lead to that office in Denver months later. We hired speech therapists and sank every dollar we had into what therapy we could afford for him. What savings we had been sticking aside went straight into helping him. His pediatrician recommended that he go to Stride Learning Center which was a place for toddlers who had a cognitive delay. We sent him there and after a few months they told us they suspected he had autism. I went straight into super denial mode again. The only reference I had to what autism was came from Dustin Hoffmans character in the movie Rain Man. Noah was nothing like that person. Once I started doing a little research on what autism was I came to realize that many of the things that Noah did were classic symptoms for the syndrome. After a couple of weeks of looking into it and reading as many books as we could my wife and I came to understand that our little guy was more then likely autistic. So when I agreed to go to the JFK Center to have him officially diagnosed I was already prepared for the news. Boy was I prepared. I had memorized a list of questions I was going to ask the doctors when they would give us the testing results. I was ready with a little speech that I would give about how we would do anything and everything for him. I was prepared to say all the perfect things to my wife Jennifer because I am sure she was going to be devastated. I was 110 % sure in how I would react when I would get the news I already in my heart knew. When the team of doctors came back in the room and asked if we were ready I said quite confidently that I was. As everyone moved into their seats and got out their papers I closed my eyes for a moment and did my pre-show ritual 'I can do this...I can do this....I can do this..." I muttered to myself. I grabbed my sweeties hand and readied my silver tongue for the moment that was ahead. Then it happened. The head doctor reached over and switched on a little camera that had been sitting in the corner of the room. The red light blinked....blinked...blinked. My expression must have looked a little puzzled so she said that having the camera was completely normal; plus they had it running much of the day anyway. Looking away from the camera I said that I was comp fine with having it on that I was just surprised because I had not seen it all day. The doctor then sat down across from me and my wife and began rehashing how the testing had gone. As she went down the list of scoring I kept rehearsing the questions I was going to ask. Then I went over the words I was going to use when she eventually came to the point of telling us Noah was autistic. The only problem was that camera that was staring at me in the face. It just sat there recording every move I was making. That little red light kept flashing at me and that was the only thing I could focus on. The doctors words became more and more part of the white noise in the background as my attention was ever drifting toward that horrible video camera. I started to get self conscious. What if that cameras eye in the sky could read my mind and find out that I was perhaps a piss poor father? It seems so painfully self absorbed now but my brain kept just thinking about my image. What if when they watched this tape later my reactions did not seem genuine? The light kept blinking at me.... What if while watching it they could make the determination that it was because of my ignorance that Noah did not get diagnosed earlier. blink blink blink What if the tape would show that I asked the wrong questions or say the wrong thing? blink Then I started to get really angry. Why would they even tape telling me the bad news at all? It seemed so damned sadistic! Did they want to see the tears well up in my eyes? Did they want to see my wifes brow wrinkle with worry? blink blink blink I became more concerned with that stupid camera and it's unending light show that I almost missed my cue: "Autism" "So after studying the results we have come to the decision that Noah having a diagnosis of autism is appropriate. He is Autistic." she said. This was it. Time for me to start asking the questions. Time for me to comfort everyone in the room that I would be taking the lead in saving his life. This was the time for me to put on the cape and be the hero Jenni desperately needed. Blink. Blink. Blink. Instead I was silent. I could not say a word. The news hurt allot more than I expected it to. I thought I was prepared...I was not. I found it hard to even find a way to open my lips to let oxygen in or out. I sat there under the weight of expectation and found myself speechless. I felt the eyes of the room upon me in anticipation for what I might say. I felt my wifes hand limp under mine in a way telling me that I needed to take the lead. Where were all those questions I had? Where was my speech? There was nothing. Nothing but an empty mind and a blinking red light. I sat there slightly amazed at the fact that a little red light could turn me into a pile of pudding. I wanted to shout out my questions! I wanted to ask them if he would ever have friends? Or could Noah ever be able to tell me how his day was? Or would he ever be able to fall in love and get married? Would he ever be able to in heart mind find peace and happiness? Would he ever have dreams? I wanted to tell them that I was going to work my ass off to make sure his life was filled with dignity and meaning! I wanted to scream that he was going to still make his mark upon this world! That he would not be a statistic or a child that was forgotten! I wanted to tell my wife that I would always stand beside her as we would advocate for him. I wanted her to know that I would make sure that we would still give all the attention that was needed to our other son Riley! (who was one at this time) I wanted everyone to know that I would love him no matter what news that would have given me that day! I so wanted to say that despite our lives being forever changed that day we would continue to live our lives! Instead I stared at the camera and let my tongue lie silent. I did manage to push out one word as I slouched back in my uncomfortable chair. As the color leapt out of my face I said "Ok" and then looked at my wife in hopes that she would take the wheel. Which she did quite brilliantly. She asked all the right questions and pushed for all the right information. I just sat there like I was her mime husband who had just come in from Paris. This is how she has always been. When I freeze she comes to life. I found the courage to nod by head or smile at the right times though most of the time I was quiet. Blink. Blink. Blink. Let's go back to present time now... August 9th 2006 As my minivan pulled into my driveway after my horrible movie shoot I sat in the car for a moment reflecting. I remembered how similar I felt tonight under the light of the cameras I did that day in Denver. I felt helpless. I felt over-whelmed. I felt frozen. It is not that I have a phobia of the lens however..I think it is because I have a phobia of that word: "Action" That word means that I have to get off my butt and do something. It means that I have to fight a little harder for one of my children then any of the others. It means that despite how others might perceive me I have to act in the best interest of my family. It means that being a parent is more then coming up with a list of questions or speech to memorize. Being a parent means I have to act. If Noah is having a bad day I have to act. If Noah is being treated with cruelty I have to act. If any of my children are in trouble I have to act! If my wife needs someone to take the wheel and be the one to ask the questions I need to act. When I feel as if I am frozen and dumbfounded by something so stupid as a blinking red eye the sky light of a camera I have to act! Being a parent is more than just saying the right things. It is being able to answer with confidence to the call of: "Action!"
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