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Friday, October 21, 2016

The Bartman Game



This post was originally published at csnchicago.com but since it appears to have been purged, I am posting it here. It is not autism related in the least, but I hope you enjoy the read all the same. 
- Lou

One of the exciting things about working in the media is that there is a chance that you are going to witness history. It is seldom the way in which you would have imagined it, and Game 6 of the 2003 National League Championship Series was no different.

I was hired as the audio technician of a camera crew for a sports television network to cover the NLCS that year. As a lifelong Cubs fan, the opportunity to be AT Wrigley Field INSIDE the clubhouse of the World Series bound Chicago Cubs was a dream come true. The Cubs were coming home up 3-2 on the Florida Marlins and Cubs Nation KNEW that this year was the “next year” we had been talking about for 58 years and that the 95 year drought was coming to an end.

Despite being so close to the action, I watched the game like most of the extra media there that day… on small televisions in a dank and cold storage area that had been converted into a “media room”. There were still bags of limestone, piles of dirt with shovels jabbed into them and wheel barrows in the one corner. Despite the atmosphere of the room, the media huddled inside were buzzing and the feeling was electric. Prior was pitching a gem of a game and had a 3 hit shutout going through 7 innings.

It was at top of the 8th inning when the liaison from the MLB came over to our crew and instructed us to follow him. As I scrambled for my audio bag and boom pole, I remember thinking to myself “This is it!” I was going to be IN the locker room of my favorite team when they broke the decades long absence from the World Series. As we left the media room, Mike Mordecai flied out to Moises Alou on a Prior fastball. The Cubs were 5 outs away from the World Series.

The Bartman Game



This post was originally published at csnchicago.com but since it appears to have been purged, I am posting it here. It is not autism related in the least, but I hope you enjoy the read all the same. 
- Lou

One of the exciting things about working in the media is that there is a chance that you are going to witness history. It is seldom the way in which you would have imagined it, and Game 6 of the 2003 National League Championship Series was no different.

I was hired as the audio technician of a camera crew for a sports television network to cover the NLCS that year. As a lifelong Cubs fan, the opportunity to be AT Wrigley Field INSIDE the clubhouse of the World Series bound Chicago Cubs was a dream come true. The Cubs were coming home up 3-2 on the Florida Marlins and Cubs Nation KNEW that this year was the “next year” we had been talking about for 58 years and that the 95 year drought was coming to an end.

Despite being so close to the action, I watched the game like most of the extra media there that day… on small televisions in a dank and cold storage area that had been converted into a “media room”. There were still bags of limestone, piles of dirt with shovels jabbed into them and wheel barrows in the one corner. Despite the atmosphere of the room, the media huddled inside were buzzing and the feeling was electric. Prior was pitching a gem of a game and had a 3 hit shutout going through 7 innings.

It was at top of the 8th inning when the liaison from the MLB came over to our crew and instructed us to follow him. As I scrambled for my audio bag and boom pole, I remember thinking to myself “This is it!” I was going to be IN the locker room of my favorite team when they broke the decades long absence from the World Series. As we left the media room, Mike Mordecai flied out to Moises Alou on a Prior fastball. The Cubs were 5 outs away from the World Series.

We walked up to the ramp and onto the concourse and the scene was unreal. A combination of pandemonium and exuberance was exploding before our eyes. Grown men were misty eyed with tears of joy; strangers were hugging each other as cheers filled the air. We squeezed through the masses as my thoughts were with my dad back home who just two days previous I had called and boasted, “Don’t worry dad, we got this! There is no way the Marlins are going to beat Prior AND Wood at home in back to back games! We are going to The Show!”

The photographer I was working with doesn’t remember this so my memory may be sketchy, but in my mind I clearly remember  walking past a souvenir stand as the vendor was putting up “Cubs National League Champions” t-shirts.  I even remember the vendor telling eager fans that she could not sell the shirts until the game was final.

We turned towards the hallway to the Cubs clubhouse and as we did, I could hear the roar of the crowd and feel the frenzied energy that they were exuding. We hurried into the cramped and bare concrete hallway to the clubhouse and waited to cover what was surely going to be history and a story that I would be able to tell my children.

There was a flurry of activity and traffic in that little hallway. As the door to the clubhouse swung open, I caught a glimpse of something that drove home the magnitude of the event. In the clubhouse were tubs and tubs of champagne and beer. Plastic was up over all of the lockers, it appeared as though a tiny staging area was being set up. I took that as my cue to prepare as well, so I threw my audio bag on and draped myself and my equipment with my poncho.

It was about that time that the crew I was with started to notice a distinct change in the rumble that was coming from the Wrigley Field stands. A loud groan was heard and then the unmistakable low pitched booing and feet stomping filled the hall. We weren’t sure what was going on, but clearly Cubs fans were not happy. The noise built into a frenzy of nervous energy that was apparent even from our position. We could not see anything. There were no televisions in the hallway, no speakers in the ceiling from which to hear Pat and Ronnie. We were blind.

Occupying the hallway with us and standing ready to charge out onto the field to keep the peace after the inevitable Cubs victory were a dozen or so of Chicago’s finest. Not long after the noted shift in mood of the Wrigley faithful, several officers got calls on their walkie-talkies and dashed off. The remainder of the officers huddled together and listened carefully for updates or orders while muttering to one another and shaking their heads in disbelief.

Our producer started to become concerned and asked me to approach the officers to see if they would tell me what all the commotion was about. When I asked the cop he smirked, “Some f***ing kid interfered with the game and now the crowd wants to kill him.” I repeat back the information to our producer and we tried to understand how a whole crowd could turn against a little kid. We had no idea that the “kid” was in fact a 26 year old man, nor did we know how serious the officer really was about the threats against him.

Our conversation was broken up as a flurry of workers rushed into the clubhouse. A man whom I could only assume was in charge of the clubhouse was screaming at the workers as they rushed in pulling down plastic and trying to roll out tubs of boozer. “Not one person sets foot in this clubhouse until I give the all clear!” shouted the man in charge and he rushed into the clubhouse and out of view.

“All right guys” said a frustrated voice. We turned and our liaison from the MLB was standing at the other end of the hallway. “It’s not going to happen today so let’s head back to the media room.”

We went back up the ramp to the concourse and the tears of joy were now tears of sadness, people were distraught for other reasons and there was a great deal of what sounded like yelling and booing coming from the direction of the concourse that would take you to the left field seats. As we walked back to the media room, the same vendor that was putting up the shirts was now taking them down. We caught a quick glimpse of a replay of Moises Alou trying to field a foul ball down the third base line and getting interfered with when it all became clear. We were now aware of what the sporting world already knew so the producer and photographer decided that they would head towards the commotion coming from the other end of the concourse and directed me to wait for them in the media room.

As I continued to the media room, TVs in the concourse were being turned off so as not to show the replays of the incident. I went down the ramp and turned left into the media room and the entire group was standing and gathered around a couple of televisions.  The local media looked stunned, the national media looked like Christmas had come early and the Florida media looked giddy. I just stared at the television dumbfounded and the confidence that I once had in my favorite team melted into doubt and resignation.

“This is what it means to be a Cubs fan.” I lamented to another friend working that day.

I hate to say I expected it, but I can say that it didn’t surprise me.  What did surprise me was finding myself where I was, when I was. I just hope that the next time I find myself in a situation of historical significance with the Cubs; it comes in the form of a celebration. We deserve it. To be so close and have it taken away seemed particularly cruel. All we needed was 5 outs.

Monday, August 17, 2015

"Be Your Way"

The following is a Facebook status written by my wife about an experience she had recently at an area Burger King.

A little context here... This particular Burger King is one that I spend hours at and quite a bit of money. My mother-in-law has pretty advanced dementia, so we usually drop my wife off so that she can have some quiet time with her mom while the kids and I kill time at this Burger King because of the indoor play-land and free WiFi. Bianca gets to use her iPad and my other two get to run around like nuts and blow off steam.

It was because of this familiarity, that my wife chose this particular establishment to duck into in a time of desperation.

Thursday, June 26, 2014

Marty's Words

Martin DeMaat was an improv teacher at Columbia College and the Artistic Director at Second City Chicago. I took every improve class I could with Marty because he was such an amazing and inspiring person. He genuinely cared and his approach to imrpov was to create as safe a place as possible for the performer. It was a true joy to be instructed by him and his passion for the art form was contagious.

I wrote down in my notebook at the start of my second class with Marty a few things that I noticed he had said at the start of the previous class I took with him as well. Marty said many memorable things, but a couple of things he said have stuck with me to this day.

"You do not have the right to feel inadequate."
"You are pure potential."

Monday, June 16, 2014

El Mero Mero

Well... not quite the Father's Day I had prepared for from an advocate perspective. I had a post about half written that I had planned on finishing yesterday, and I had some ideas from a sharing perspective as well... all of that got placed on the back burner though.

The patriarch of my wife's family, Bianca's abuelito and hero passed away Saturday at the age of 92.

He was my wife's everything. I always say that I am the third most important man in my wife's life... her dad, our son and then me. And I am fine with that.

Sunday, June 1, 2014

A Cut Above the Rest

Today I paid $20 for a $10 haircut... and couldn't be happier.

I took Bianca to get her haircut today, and as soon as we walked into the place, she started to melt down. I sat her in my lap to try and keep her calm but she wanted none of it. She was flailing about, grinding her teeth, trying to head-butt me and kicking all over… and the stylist had yet to even touch her.

As Bianca weeps uncontrollably I wonder why I even bothered giving our name ahead of time and killing time at Target. The whole reason I didn’t stick around was because I didn’t want Bianca to get agitated while waiting. I was trying to be Superdad and was out with my three kids and adult male cousin who is great with our kids, but certainly not used to Bianca blowing a gasket in a public place. My bride was attending the graduation of a family friend and I wanted to surprise her with a new summer “do” for Binks.

A very meek and demure looking lady looked at me as two of my kids were chasing after one another like maniacs and Bianca was in hysterics and hesitantly asks who I was with. “Bianca” I reply while giving a head gesture towards the kid who is now on the floor with tears streaming down her face and snot bubbles coming out of her nose.

Monday, January 27, 2014

School Safety: Avonte Oquendo's Legacy

The Riverview School as seen via satellite from Google Earth.
The name of the school sends shivers down the spine of any parent to an autistic child. The Riverview School, a school for children with special needs, screams danger right there in the title yet the security provided the children of that school was nowhere close to being proportionate to the level of danger provided by its surroundings. A satellite view from Google Earth of The Riverview School. It indicates that those warning bells are justified.

On October 4th 2013, 14 year-old Avonte Oquendo slipped away from his class while on the way to a technology room. He allegedly ran past a security guard, out a side door and was never seen again.

Friday, December 13, 2013

VICTORY! - Comcast/NBCU and ABA Coverage



As many of you know on April 2nd, 2013 I released "An Open Letter to Comcast CEO Brian Roberts and NBCU CEO Steve Burke"

In the letter, I pleaded with Mr. Roberts and Mr. Burke as fathers to do the right thing and voluntarily elect meaningful autism benefits (ABA) to our company’s self-funded insurance plan.

I can honestly say that I thought I would be fired.

There were a few things in my favor. My new boss has been a friend since 1995 and I went to him before I released the letter and asked him for his advice before I published it. He was incredibly supportive as were all of my fellow employees.

Wednesday, September 25, 2013

The Mickey Mouse Club-bing




The State of Illinois passed measures to change their policy regarding handicap placards and parking meters.

As it currently stands, if you have a handicap plate you need not feed the meters. You can park at any metered spot and not have to worry about having to return in two hours to feed the meter or looking for specific handicapped parking spots. The city does offer those as well in case people with disabilities have trouble finding parking.

This policy has saved my family immeasurably. We have a disability plate so that we can park close to stores. Bianca, as I have written about, is an eloper. She also LOVES to go to the store. Leaving... not so much. Often times I have had to drag her out in the middle of a meltdown with the other two kids in tow, so being close to the store makes that all a little more manageable.

Wednesday, August 28, 2013

My Dream



Last year I attended the Annual Law Summit presented by Autism Speaks. It was my first time in the nation’s capital. There was one place I knew I had to go while I was there... the Lincoln Memorial.

Not only did I want to go because of what Lincoln had accomplished or because of his ties to my home state. I wanted to stand in the place where the greatest speech on equality was ever given. Not just to honor the work and legacy of Dr. King but to invigorate my own personal battle for equality within our healthcare system and to end clear discrimination that autistic people face when it comes to health insurance coverage. 

Wednesday, August 21, 2013

A Spectrum of Similarities




As I read that horrible letter by that horrible person I focused on the words that were written. There were words being used to describe young Max that were vile… disgusting… evil.  Then I started to realize that those words were not being used to describe Max at all. They were venom… nothing more and nothing less.

Sunday, July 21, 2013

Monday, July 8, 2013

30 Lessons Learned



I thought I would take a moment and share with you some of the important lessons I have learned raising an autistic child. You may want to tuck these away in the ole memory banks so that you can call on them when need be. Here are 30 in no particular order…

Tuesday, May 28, 2013

Guess what?




One of the things that I truly appreciate about Bianca is the level of our communication. I understand her like no other person. I know what she means when she furrows a brow just so, squeals a certain way or pulls my hand in a certain direction… and of course when she just plain asks for stuff.

 Her speech is coming along pretty well. More and more she asks for specific things or uses words to describe her environment. Just the other night while at a party she told me “Back home” when she clearly had enough of the environment and all that was going on. That certainly makes things easier and has led to a lot less meltdowns over time, but despite all the advancements her level of communication is still quite different and definitely well behind that of a NT 7 year old.

I don’t know why this particular thing I am about to share is such a source of pride and joy for me. It seems so incredibly silly… ridiculous really. But maybe that is exactly the reason why. It is just fun.

Tuesday, April 2, 2013

An Open Letter to Comcast CEO Brian Roberts and NBCU CEO Steve Burke




Dear Mr. Roberts and Mr. Burke,

My name is Lou Melgarejo and I am a Comcast/NBCU employee. I have what I consider to be my dream job. I am a married father of three. I am first and foremost a family man. My oldest daughter is a beautiful, energetic, happy and incredibly intelligent 7 year old girl named Bianca. Bianca happens to be autistic.

The current autism diagnosis rate according to the CDC is 1 in 88 while a recent study suggests that the number could be even higher at 1 in 50 or 2% of school aged children being autistic. Our daughter Bianca is one of those 88, but we like to refer to her as being "1 in a million".

Thursday, March 28, 2013

What's Old is New Again



"Success is stumbling from failure to failure with no loss of enthusiasm." - Winston Churchill


With Bianca at 13 months. Before she regressed.
When Bianca was 12-13 months old (before her regression) she was ahead of the curve on a lot of things. One of those things was labeling.

One of my favorite things to do with Bianca when she was a baby was to grab one of her favorite picture books and flip the pages as she pointed to and told me the names of ALL of the animals. It also became one of the things that made me angriest about the regression… that it took that from us. Bianca became more content chewing on a book than she was labeling once her regression started to kick in.

I would grab her favorite book and sit down with her and witness the gradual decay in her ability and/or interest in labeling. She lost the words altogether eventually. Asking her to participate in an activity became futile. She was much more content to be on her own and to become engrossed in trying to find any microscopic crumb on the floor to mouth. It would depress the hell out of me.

Still, you move on.

Wednesday, March 27, 2013

Build-A-Bear? Build a Foundation.



“If we are to teach real peace in this world, and if we are to carry on a real war against war, we shall have to begin with the children” – Mohandes Ghandi




It has to start somewhere right? Traditionally that has been with the children.

When studies show that nearly half of all autistic teens reporting that they have been the victims of bullying, we have to get the message to kids sooner. Acceptance and tolerance are vital to ending bullying. Those lessons MUST be taught and reinforced at home as well as in the classroom. We must be teaching our kids about the power of love and leading by example EVERY day.

In order to do that, there has to be a dialogue. There has to be an open line of communication. Sometimes that can be a challenge. We don’t always know how to talk to kids on their level and the fear of saying the wrong thing can paralyze us into inaction. What we need is a little confidence and some tools, something to break the ice and open up the give and take required in an important conversation.

Monday, March 25, 2013

Spring Breakdown




Monday starts Spring Break for the kids. I can’t really relate because I never felt this way in my life about school… but both of my school aged children are bummed about it. So are the wife and I.

Sofie just LOVES school. A few weeks back she was complaining that her tummy hurt. She was all bundled up and ready to go catch the bus when she stopped dead in her tracks and held her stomach. “Can you kiss my tummy daddy? It doesn’t feel so good.” I leaned over gave her a kiss on the stomach and not two seconds later she vomited all over the place. When we had to call her off of school she cried and cried. “I don’t want to miss school! I will miss out on all the fun!” she bawled as gigantic tears streaked down her face. She is in kindergarten though, so I will revisit this feeling she has towards school in a few years.

Bianca on the other hand… she gets bummed in a different way. Her sleep pattern gets disturbed, she becomes irritable and starts to act out. Head banging increases, meltdowns increase and then it takes several weeks to get settled back into her routine once school is back in session. So one week off, sets her back about a month.

Saturday, March 23, 2013

Lighting It Up Blue


April is Autism Awareness Month and April 2nd is World Autism Awareness Day as declared by the UN General Assembly. It is also the day that Autism Speaks asks for residences, businesses and buildings to change their exterior light bulbs from white to blue in an effort to kick off Autism Awareness Month and raise awareness via a promotion called Light It Up Blue.

Before we are even there I have already read my fair share of posts and comments criticizing the event. I have seen attacks on everything from the event actually doing nothing to help autistic people, to wondering just who it was that chose blue to represent the autism community in the first place.

If you are relatively new to the autism community… get used to it. It seems that no organization or individual can do much of anything without somebody thinking they are going about it all wrong. Stay positive though. Just go with what you feel like is the best way to honor your autistic loved one or if you are autistic, whatever makes you feel proud. For my family, we enjoy participating in Light It Up Blue.

Sunday, February 17, 2013

Bear, Duck, Frog



As anybody that follows regularly knows, the potty is Bianca's muse.

Yet again while sitting on the potty, she surprised me.

She has a host of stuffed animals that I refer to as "the guys" but she has lately been referring to as "my babies". On a trip to the ER a while back for an infected finger, she brought them along for support and we passed the time labeling them.

Sitting on the potty today she started to name three that we left behind in the living room so that she could sit on the potty.

"Bear" said Bianca, “Duck. Frog.”

“Yes.” I replied, “The guys are downstairs. You can play with them once we are done on the potty.”

“Bear” Bianca repeated with a smile. She then grabbed my hands and forced them to cross. “Bear”

Huh?

“You want a bear hug Binks?” I asked.