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Hello Orlando Fringe Festival!

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Just a quick note to say thank you to everyone who came out to see my show The Gospel According to My Old Man at the 2018 Orlando Fringe Festival. I had a great time sharing Ben's story with a new audience, you were all absolutely lovely.

Still Here

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So....  it's been a while. Sorry. Over a year since the last time I posted anything on this blog. I had a kind reader leave a comment yesterday, and I realized that I should probably post something here. I promise this weekend I will write a full post with pictures, Ben has become quite the photographer these days. In the meantime, here's a photo of Ben with his current heartthrob:

Sensory Friendly Film Issues

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AMC Theaters has a very excellent program called Sensory Friendly Films, in which they screen first-run movies in a special setting customized towards autistic persons. They keep the lights up a little bit so the theater isn't so dark and scary, they turn the volume down a bit so the movie isn't so loud and scary, and most importantly they make it clear that the viewers are welcome to make noise, walk around, and just generally be themselves. As the parent of an autistic person, this means I can take my son to a movie and not spend the entire time stressed about him bothering other patrons. There aren't that many first-run films that Ben is interested, but when there is then this program is really great.

Hello DNNCon!

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A big hello to anyone from DNNCon Baltimore who has actually taken the time to come and visit my site. I had a lot of fun doing my Ignite Session, and I am glad so many people seemed to enjoy it. If you decide to check out my book, or my sister site OctopodalMotion.com, that's way cool. If not, that's cool to. Feel free to drop me a line, just check out my Contact Info page for details.

Graduation - The End of an Era

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Tonight, Ben graduated from high school. I know it seems cliche to say, but it really does seem like only yesterday that he took those first terrifying steps into school.

He spent five years in public schools (first in Seattle, and then later in Orlando), and then spent a dozen years at a charter school just for autistic children.

We have watched him grow from a sickly pale wisp of a child, ten years old and still wearing diapers, into a strong and healthy adult.

In the state of Florida a special-needs person can remain enrolled in public school through the end of the semester during which their 22nd birthday occurs. Ben's birthday was just over two weeks ago, and the semester ends this week. And so, tonight he graduated high school along with two of his classmates.

As graduation ceremonies go, it was extremely brief. Some opening remarks, a 3 1/2 minute video retrospective of the three graduating students, and then the presentation of the diplomas. The whole thing was over and done within fifteen minutes, but to the school's credit it was treated with all of the seriousness and pomp & circumstance of any other graduation ceremony. It was intimate, yet well attended, andt here was not a dry eye in the house.

So that's it, the end of an era. Ben actually has two more days of school, but after this Friday he is done forever with the public school system.

So what happens next? Honestly, it is going to take some time to figure out the "new normal". There is an Adult Day Training program we are looking at, and I am hopeful that it will work out. Statistically, most individuals in Ben's situation turn twenty-two and then spend the rest of their life sitting on a couch watching television. That is no good for anyone, least of all the autistic person. He deserves to continue to have a meaningful place to go each day and to make a worthwhile life as best he can. It is going to be a rough transition, and it is going to take some time to really figure it out.

I don't know where Ben is headed, but I am truly fascinated to find out. He has come such a long way, with so far yet to go. I hope it's a good journey.

Benjamin's Lullaby, Professional Take

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As you may know, I wrote a song a few years ago about my son Benjamin and his time spent on Snow White's Scary Adventures. I recorded it as best I could, and it turned out okay, but I knew it could be so much better. Last week I had the opportunity to have my song covered by Todd Burge. You may or may not know him, he has appeared on the Mountain Stage nearly a dozen times and is, in my opinion, a truly great musician. I have admired his work for several years now.

He is  currently running an IndieGoGo campaign, raising money to fight severe food allergies, and has some pretty cool perks you should check out. If you like Americana and folk music, you will enjoy his albums. He also has some really cool jewelry that is actually made from the mandolin and guitar strings used in the recording of his latest studio album.

Anyway, here is Todd Burge performing my song Benjamin's Lullaby, and embuing it with a level of combined hope and melencholy that is truly beautiful. Honestly, it made me tear up the first time I heard it. I hope you like it, too.

Benjamin' Lullaby (All is Well)

I WANT TO RECORD A VIDEO OF YOUR SONG!! Click the link at the end of the video and find out more. Together, we'll raise some money for The Food Allergy Network too! This song was written by Ron Miles about his son Benjamin who is autistic.A visit to Disney in Orlando and one ride in particular totally opened up Benjamin's world. The transformation was so profound, the family moved from Seattle to Orlando. He rode it 3,500 times in ten years! Here's my version of Ron's song. Thanks Ron!

Posted by Todd Burge on Wednesday, December 2, 2015

 

Greyhound Memory

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I read the other day that the old Greyhound bus station in Seattle is being torn down. I can’t remember the last time I saw it, or went inside it (definitely not in the past decade), but it certainly holds some memories for me. I spent a fair amount of time passing through that cavernous eyesore as a boy in the late 70’s and early 80’s as a side-effect of my parents’ divorce. When I saw the news article about the building’s impending destruction, it immediately brought back one particular memory - a very strong one, and what could have easily become a starkly pivotal moment in my childhood.

Farewell, Peggy

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Bad things happen to the kindest people
God and the Devil are kind of hard to tell apart
And I feel like my soul’s been crippled, slowly
After the tornado, when everything is wrong

When I decided to uproot my family back in 2003 and move from Seattle to Orlando for the benefit of my autistic son, there were some immediate side effects. One was that I was propelled into proposing to my then-girlfriend, because I was not comfortable asking her to move to the opposite corner of the country without “a ring and a promise”. Another was that I needed to move my retired, disabled mother cross-country along with us so that I could remain nearby to care for her. 

An Unexpected Father's Day

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In the dozen years since we moved to Florida, I have had the good fortune to meet and befriend any number of amazing Disney cast members. I have, of course, met several Friends of Snow White. I hang out with the original Belle from the Studios back in The Day. And most importantly, relevent to this story, I have gotten to know the legendary Billy Flanigan. He has been a fixture among the performers at Walt Disney World for more than three decades now, doing everything from Broadway at the Top to the Hoop-Dee-Doo Musical Review. If you got your picture taken with Ken back in the 90's, it was probably Billy. These days he is in the cast of Finding Nemo: The Musical, and back in April he invited Ben to come and see the show, and to meet the cast afterwards.

See, What Happened Was...

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NOTE: This is not a post about Ben, autism, or Disney. It is a post about why I haven't written about any of those things in the last nine months. I promise I have plenty to write on those topics in the future.

Hey! How are you doing? Long time no see! What happened to me? Ah, well, I got kinda busy with my day job. See, what happened was...

Ben and Snow White

Ben and Snow White

About Shmoolok

The word "shmoolok" is a mashup of the longtime computer handles for my wife and myself ("Shmooby" and "Lokheed", respectively).

I originally created this website to be a place for my family to connect, but it has since grown into something a little different.

As for me -- I am a father, a husband, a son, a software developer, and a writer. On any given day I am not sure how good I am at any of those particular things, but I do try my best.

Thank you for visiting my website.

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ISBN: 1-482-09330-8

Benjamin's Lullaby

Popular Entries

There has been an influx of new readers to my blog. If you wound up here looking for stories about my son's ten year romance with Snow White's Scary Adventures, here are the major blog posts you will want to read:

SW1K - The Full Story

SW1K Redux

SW2K - The Full Story

SWSA Final Night - Prelude

SWSA Final Night, Part 1 - The Beginning of the End

SWSA Final Night, Part 2 - The Fairest One of All

SWSA Final Night, Part 3 - Counting Up, Counting Down

SWSA Final Night, Part 4 - The Big Ending

SWSA Final Night - Epilogue

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