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Archive for the 'Social Awareness' Category

A Father and Autism: When “Thanks” is Not Enough

22nd May 2012

 


Travis just after anesthetic

“Exhausted”.

That’s about the best word to describe today. But, with assistance from friends, family, and surprisingly, a host of people that we have never met, Travis had his medical/dental procedure done today. As he sleeps near me on the floor – part of the lasting effects of the medication still in him – it’s been 9 hours since we left across town for his appointment. We had to wait all this time to find an opening in the schedule that would allow us to get in first thing in the morning as Travis could not eat after midnight the day of the procedure. The worry was if it was later, he’d start whining for food and milk, and well… when you can’t reason with a child; it can be a dramatic affair. After all, all he’s wanting is something to eat. You can’t reason with him via the autism.

The picture above shows Travis about 30 seconds after the anesthesiologist administered the shot. Travis being Travis didn’t know what was going on with the shot until it happened. “Owwww!!! BAND-AID….!” A few seconds later, he was out and he was carried away out of sight of his parents.

As we sat in the waiting room, my thoughts on the fundraiser that we had to have for all of this to happen was on my mind. We have been incredibly fortunate to be blessed with assistance from so many, and I thought about how often the scene I was living out was playing out across the country and around the globe. Many are not as fortunate and I don’t know how some parents survive the challenges.

So, what was the result of the examine and work thereafter? X-rays revealed that Travis had 9 cavities which needed to be filled, a nasty side-effect of a diet that redefines “picky.” He will not eat much of anything other than starches. Bread… French fries… cookies… the best we can do is get Soy milk in him with vitamins and if we’re lucky the occasional request for apples or cheese.

Total out-of-pocket cost for the day would exceed $3,000 for approx. 2 hours of work. If not for the fundraiser that covered a fair portion of the total, we would have been in a tight spot.

This is a tale of just one thing. These types of events will occur throughout Travis’ life as it will for other children on the autism spectrum. I never understood how the cost of raising a child on the ASD scale could reach well into the millions, but I understand now. It is the unexpected. It is the thing that seems so simple in relationship to raising “neuro-typical” kids and yet becomes a huge challenge on a level you never expected to face with autism in play.

We can’t thank all those that donated, enough. There were so many, most of whom wished to remain anonymous. But, I do wish to extend a special thanks to the sports community of which I’m blessed to be a part of. Via Twitter, blog posts, and more, word of Travis’ situation spread, and the donations came pouring in, none more than through my Texas Rangers friends. No, I do not live in Texas, but Adam Morris and the good people at LoneStarball.com brought in so many donations that it reaffirmed my belief in humanity. That spread to PinstripeAlley.com where New York Yankee fans  added their voice. Along the way, members of the media – both big and small – joined in. The result is that you have made a difference in a family’s life. My wife and I thank you, and one day, I hope to hear Travis thank you, as well.

Our love,
Maury and Glenna Brown

Posted in Maury's World, Social Awareness | 2 Comments »

A Father and Autism: The Cost of Autism

1st April 2012

UPDATE: (Weds, 4/4/12) – First off, I and my wife have been overwhelmed with the outpouring of support for Travis. The compassion we’ve seen has touched us beyond words. With so much interest, I wanted to pass along this update…

I wish we had better news to report, but our trip today did not go as planned. Trying to get the sedatives into Travis required holding his mouth shut, and even then, he did not get all that was needed in his system. The comment from the pediatric dentist was, “You have three options: we can try, but by the looks of it, I would not suggest it. The other is we can strap his arms down and lock his mouth open. Or, we can go the suggested route which is putting him completely under with an anesthesiologist to administer.”

We have decided to go with the latter. One hopes and prays that over time, his ability to go to the dentist without these radical options will subside. Maybe it’s me, but “strapping down” a child – autism or not – is going to create a massive amount of anxiety. The downside is, the cost will be increasing… substantially. As I said to a friend, “Autism: the gift that keeps on giving.” Of course, it’s not “autism” it’s the insurance companies. Why will it cost so much out of pocket? The procedure that is needed for Travis is deemed “elective”. I wish whoever wrote that into the policy would have been there today to see what occurred.

Thanks again for all your support. It means more than words can say. – Maury Brown


Four years. It doesn’t seem like it’s been that long. And at the same time, I’ve forgotten what it’s like to see my son without it through the prism of autism.

Travis will be turning 7 in May. Many of the challenges that we faced when he was first diagnosed have gone away, only to be replaced with new and different ones. In that, autism is a dynamic, morphing, and life-altering process. It has changed me, my wife, and eldest son’s life in ways unfathomable. It has made me revaluate what is truly important. In that, Travis has taught me more than I have taught him.

But, even in our best efforts to try and understand and prepare for what may come forth from Travis as a “classic” autistic – one lower on the scale – it can be surprising. The cost of autism was not something we thought would impact us so soon.

The cost of autism is staggering, and this is just everyday life costs. We have yet to get Travis fully potty trained. Cost? As much as $60 every week.

It goes further. While it’s not uncommon for kids to be anxious about going to the dentist, for Travis, it’s a full-blown medical procedure. You can’t rationalize with him to get through getting the cavities filed (a side-effect of the autism is a diet that is almost all starches – he will not eat much of anything else, which increases the chances for cavities). Getting a drill in his mouth is an impossibility. So, to do so, we will go to a special dentist, and try sedation. Cost not covered by insurance? Between $500-$1,000. If that doesn’t work, we will have to have him go to the hospital where he will be put under complete sedation, and monitored by an anesthesiologist, just to allow the dentist to do his work. Cost? Thousands (with an inability to shoot X-rays, he may require more extensive work). And, this doesn’t include his “night terrors” which don’t always happen at night and will likely require more attention. The reason for these moments are likely a side-effect of being over stimulated by way of the autism disorder.

To that end, this year is personal. We have started a small fund-raiser for Travis to meet these needs. A PayPal link is provided below for donations.

Donate to the Travis Brown Autism Fund

Through it all, Travis is still a soon to be 7-year-old little boy. He has incredible tactile skills on the computer, often exceeding the skills of his 10-year-old brother in games. He likes Transformers, Legos, and dominoes, but not in the traditional way: he watches YouTube clips. He loves short hikes with his dad, and enjoys school. In that, he is just another little boy. A little boy that can’t speak, but can communicate in other ways.

This is why autism awareness is so important. The challenges are often daunting for parents and siblings, not to mention the children that will grow up to be adults. Please help by promoting not only awareness, but compassion.  Our main focus is to promote autism awareness and have donations made to Autism Speaks through all the Business of Sports Network websites. This personal story simply tells of one aspect and the reason why finding the root cause of autism is so important.

Thanks,
Maury Brown

See details on the 2012 Autism Awareness Challenge.

FOLLOW MAURY BROWN ON TWITTER @BizballMaury

Posted in Maury's World, Social Awareness | 2 Comments »

Peter Gammons, Matt Kemp, Alyssa Milano, Ken Rosenthal, Others Lending Support for Autism Awareness

12th March 2010

UPDATE: If you are a sports organization, high profile athlete or entertainer, or business that wishes to add your name, please contact Maury Brown through the Business of Sports Network


As you may or may not know, April marks the beginning of International Autism Awareness month. The brain disorder affects millions of children and adults in the US alone, including my son.

This will mark the third year that I, and the Business of Sports Network, have done our Autism Awareness Challenge, and we are looking to make this year the best yet.

We began reaching out today to individuals in sports and entertainment, and in just a short period of time, have gotten off to a great start.

We already have commitments from:

  • Autism Speaks
  • Matt Kemp (Outfielder, Los Angeles Dodgers)
  • Peter Gammons (MLB Network, MLB.com, NESN)
  • Alyssa Milano (Television, screen and stage actor)
  • Triple-A Portland Beavers of the PCL
  • Portland Timbers FC of the USL, soon to be MLS in 2011
  • Populous (Stadium and Global Design)
  • Ken Rosenthal (FOXSports.com, MLB Network)
  • Dave Sims (Television play-by-play commentator for the Seattle Mariners, radio play-by-play for Sunday Night Football on Westwood One,  television play-by-play host for UFL on VERSUS)
  • Gordon Edes (ESPNBoston.com)
  • Peter Abraham (Boston Globe)
  • Chuck Armstrong (President, Seattle Mariners)
  • Sports Management Worldwide
  • Yardbarker Network
  • Sports Business Radio
  • Jim Duquette (Sirius/XM Radio MLB Home Plate, former GM Baltimore Orioles, New York Mets)
  • David Kahn (President, Basketball Operations, Minnesota Timberwolves)
  • Victor Rojas (Television play-by-play voice of the LA Angels, formerly with MLB Network)
  • Will Carroll (Baseball Prospectus)
  • Jesse Sanchez (MLB.com)
  • Joe Hamrahi (Baseball Daily Digest, Baseball Prospectus)
  • Brent Gambill (Executive Producer, MLB Home Plate, Sirius/XM Radio)
  • Dave Barr (Producer, Sports Talk With Bo Mattingly. KREB 1190 Fayetteville, KTTG ESPN 96.3 FM Ft. Smith, KABZ 103.7 FM Little Rock)
  • Chuck Greenberg (Pittsburgh sports attorney)
  • Pat Courtney (MLB spokesperson)
  • Mike Dilorenzo (NHL spokesperson)
  • Jason Rosenberg (It’s About the Money, Stupid blog)
  • Oregon Sports Authority
  • Todd Radom (Graphic artist, sports logo creator)
  • Gary Armida (Full Count Pitch blog)
  • Jeff Levine (Business of Sports Network)
  • Pete Toms (Business of Sports Network)
  • Devon Teeple (Business of Sports Network)
  • Jordan Kobritz (Business of Sports Network)
  • Joe Tetreault (Business of Sports Network)

There will be more coming, and will update as they arrive.


OTHER NEWS FROM THE BUSINESS OF SPORTS NETWORK

(THE BIZ OF BASEBALL)


Maury BrownMaury Brown is the Founder and President of the Business of Sports Network, which includes The Biz of Baseball, The Biz of Football, The Biz of Basketball and The Biz of Hockey. He is available for hire or freelance. Brown’s full bio is here. He looks forward to your comments via email and can be contacted through the Business of Sports Network.

Follow Maury Brown on Twitter

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Posted in Social Awareness | 2 Comments »

The Power Of Family Is Stronger Than Autism

7th November 2009

A Note…. SPORTS BASH is about sports, but in reality, it’s about more. Since this is a personal blog, there may be intersections into other matters of interest. One of mine (and a growing legion of others around the world) is autism. I hope you will bear with me on the side roads, but as is often the case, the side roads you may not have traveled prior, lead to some interesting places.


Autism is a strange thing. I can’t describe its impact to those that are not around it, but I’m learning daily that it is all around me… you… its effects are everywhere.

A few months ago, I approached my wife about filming a short film for Autism Speaks, the autism awareness advocacy group. They were planning on doing an advertisement about how autism influences family. The requested footage was simple: film the one with autism along with family in a favorite spot where the one with autism enjoyed going. The footage would then be added with others to make the commercial with a voice over.

The location was easy enough for me to select:

CouncilCrestFountainThe location is Council Crest in Portland, OR at the top of what is called the “West Hills”. The location, which has a panoramic view of Portland, also looks west down to where our home is.

In the small park is a drinking fountain of amazing design. It is of a mother holding her child in the air.

The fact that our son, Travis, who has “classic” autism so enjoys the fountain, with the symbolism of the joy of parenthood was staggering to me. It would be perfect for the film.

But, as those that care for one with autism will tell you, your plans are never solid; often times, dismissed due to autism’s chaotic nature.

It could have been the exhaustion. It could have been getting everyone in the family together for the film. Whatever the case, we never made the film and sent it in.

So, it has been of great interest that I saw the finished product today. I found it through an article on TIME.com (see ‘I Am Autism’: Advocacy Video Sparks Protest)

In reading the article, my brow furrowed. The article details how those that are living with autism are planning on protesting the ad, outlining autism’s polarizing effect:

The latest example is the eruption over a video produced for Autism Speaks, the nation’s largest autism advocacy group. The slickly produced video, written by Grammy-nominated songwriter Billy Mann and directed by Academy Award–winning director Alfonso Cuarón, shows a series of images of children with autism, accompanied by an ominous voice-over: “I am Autism … I know where you live … I live there too … I work faster than pediatric AIDS, cancer and diabetes combined … And if you are happily married, I will make sure that your marriage fails.”

Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.

Sure enough, the video does start that way, with the dark, sinister voice over showing those with autism standing alone. But then, the ad changes… As someone that sees autism’s effect, and yet sees the power of the human condition — the rallying of those that reach out — you see that it the power of those that wish to combat it head long are stronger than the supposed darkness that can come with it.

See for yourself… stick with it till the end. Powerful, is an understatement:


Maury BrownMaury Brown is the Founder and President of the Business of Sports Network, which includes The Biz of Baseball, The Biz of Football, The Biz of Basketball and The Biz of Hockey. He is available for hire or freelance. Brown’s full bio is here. He looks forward to your comments via email and can be contacted through the Business of Sports Network.

Follow Maury Brown on Twitter

Posted in Maury's World, Social Awareness | 1 Comment »