Happy 11th Birthday To My World-Changer

Today, my second child, Jack, is 11 years old. It’s a weird kind of day. I remember my 11th birthday back when I was in the sixth grade, and now Jack is that age. I was excited and had fun that day. Jack doesn’t even know today is his birthday.** I haven’t blogged in months, but I owe him a post on his birthday. My life wouldn’t be what it is today if he was any different.

About five days shy of 11 years ago.
About five days shy of 11 years ago.
** If you’ve never been to this site before, click here to see what Operation Jack is and why the site exists (it’s because of Jack, my birthday boy).
Jack was born perfectly healthy on September 16, 2003. But that was then. He’s nowhere near healthy now. Jack is severely autistic. He still wears diapers and makes holes in walls with his head and punches himself when he’s in pain (sadly, he doesn’t understand that makes it worse). He has severe issues with his gut and his brain. He has a mental retardation diagnosis. I will fight for him until the day I die. Heck, I basically got kicked out of Colorado fighting for him and I have no regrets about that. I’m not in this to make friends. I’m in this to fight for my family.
At this point in his life, he was a healthy child.
At this point in his life, he was a healthy child.
But realistically, his stay here in this world is ruined. I’m not as optimistic as I used to be that I’ll ever converse with him, although I do hold out hope that someday he’ll be able to live independently in a guest house that we would build for him, and maybe have what we would consider to be a simple job, like bagging groceries or fetching shopping carts or something like that. That’s not my target for him — I’ll always shoot for the moon. That’s just what I suspect he’ll be able to do.
I always wonder what he's thinking about at times like this.
I always wonder what he’s thinking about at times like this.
How he got to where he is — well, it’s controversial to talk about when you’re trying to be a diplomatic autism ambassador, spreading awareness and raising money for charity. But really, today, I don’t care. I’ll bring it up. Vaccines ruined him. It’s as simple as that. Don’t bother telling me they didn’t, because they did. Yes, vaccines can prevent illnesses. But they can also injure. The government admits that and compensates for it. In Jack’s case, that’s what happened — he was permanently damaged by vaccines. It makes us sick to think back about it, like we did this to him. But we don’t really spend a lot of time dwelling on that aspect. Obviously, we had no clue it would be like this, and at this point, we just run ourselves into the ground trying to do everything we can to improve his quality of life.
Jack does well in his special ed classes and every teacher who has been willing to work with him has always loved him.
Jack does well in his special ed classes and every teacher who has been willing to work with him has always loved him.
We moved to Pennsylvania last year, sight unseen, based on the schools and services offered here. That was tough to do, since we’re 3,000 miles away from our family in Southern California, but it’s been amazing for him and our other two kids. My wife Tiffany and I are pretty resolved to the fact that our days of hands-on parenting will last until the day we die, and that’s fine — there are no guarantees when you become a parent, and it’s nothing compared to what his life will be like.
Love it when he smiles! Love me a happy Jack!
Love it when he smiles! Love me a happy Jack!
But, while sitting here being upset about the negatives, about how I think he didn’t get a fair chance, I still am overwhelmed by this journey with him and how it’s impacted us. For me, a lot of it revolves around Operation Jack. He taught me to think beyond myself, that’s for sure. He inspired me to start a charity, the Operation Jack Autism Foundation, because I wanted to help other people and do something positive so that what he goes through isn’t for nothing. I’m confident at this point that we’ve done that. I’ve had a lot of people tell me how he’s inspired them in one way or another, and I see the dollars that go out and help charities, and it makes me happy to know that he is leaving a footprint.

He's 50% Irish (Tiff's genetics)
He’s 50% Irish (Tiff)
He's 50% redneck (me)
He’s 50% redneck (me)

Selfishly, I’ve met a lot of great people and had a lot of great experiences that I wouldn’t have had if not for him. I’d trade all of that in without hesitation, but all we can do is move forward, so at least there’s that positive. He’s made me a better person, I have no doubt about that. I have a ton of flaws, and I’ll be on my deathbed someday feeling like a failure because of a lot of those flaws, but I do know that he taught me to think of other people, and to try to be a little less selfish and a little more helpful.

Most 4th graders don't have to go through 24-hour EEGs. But he handled this very well.
Most 4th graders don’t have to go through 24-hour EEGs. But he handled this very well.
The way he’s shaped my wife Tiffany has also been amazing. We’re buried alive by all of our obligations and stresses, and a lot of times, it can be very difficult getting through the days because of the impact he has on us (try to imagine chasing around an 11-year-old toddler who’s a threat to hurt himself or damage property without warning, who’s up at 7, not typically asleep until 9:30 p.m. or later, and frequently awake with meltdowns for hours at a time in the middle of the night). It’s tough living under this roof. I look at Tiff and see somebody who’s worn out and living with not enough happiness. There’s not a ton we can do about a lot of that, but at the same time, I’m so proud of the mom she’s become. I think back to the 18-year-old I started dating 20 years ago and the look at who she is now, and she has turned into an amazing mom, the fiercest mama bear you’ll ever meet, as committed as she could possibly be.
Chilling in the back yard, playing on his tablet. Life is good.
Chilling in the back yard, playing on his tablet. Life is good.
Jack is very difficult to take care of. He can be very frustrating to try to control. But everybody who ever works with him falls in love with him. He really only has problems when he’s in pain (which, unfortunately, is far too frequently), but he’s a very sweet, affectionate child. I’d do anything to make him better, but realistically, I know he faces long odds.
Jack and "Temmy" ... that stuffed bear has been through the ringer, but he still sleeps with him every night.
Jack and “Temmy” … that stuffed bear has been through the ringer, but he still sleeps with him every night.
Today marks 11 years since he was born healthy into this world. We’re still waiting for the first day that he doesn’t cry at all. We’re also still waiting for the first time we can talk to him and ask him how he’s doing. But we’ll keep doing our best for him, never giving up, always optimistic that someday he’ll break through and get better.
Jack and his sister Ava at a candy shop in Philly. I love this picture!
Jack and his sister Ava at a candy shop in Philly. I love this picture!
His birthday today, it’s certainly bittersweet. There’s no way around that. But I’m grateful we have him, I’m grateful for the impact he’s had on us, and at the end of it all, having him in our life is definitely something to celebrate.
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Free Mount Desert Island Marathon Race Entries

For close to five years now, I’ve been doing everything I can through my Operation Jack Autism Foundation to try to raise money for autism-related charities, one dollar at a time. It’s always one idea at a time, and the latest thing I’m going with is building a team at the Mount Desert Island Marathon in October. It’s a great race and all the money raised will be split between two autism-related charities in Maine: Springy Pond Farm and the Autism Society of Maine.

I’m offering what I think is about the best package for the lowest threshold out there: With just a $100 fundraising commitment, Operation Jack will provide you with a free entry into the race, an Operation Jack tech shirt and a custom hand-created canvas painting with an MDI Marathon theme created by members of L’Arche Mobile, an organization in Alabama that provides a group-living situation for mentally disabled adults. More on that in just a minute.

Springy Pond Farm’s mission is to provide therapy that is fun, meaningful, motivating and rewarding by engaging with animals, nature and purposeful activities. They support the mission of every learner with an individualized, holistic and measurable approach.

The Autism Society of Maine’s mission is to provide education and resources to support the valued lives of of individuals on the autism spectrum and their families.

I’m looking to build a team of 10 runners, who can participate in the half marathon, full marathon or marathon relay. My basic principal is that for something like this, the money I spend on race entries will turn into donations that are at least equal to the expense of those entries. The money going to Springy Pond and ASM will be at least equal to the money leaving Operation Jack.

But what’s always the case is that people aim for $100 and it’s so easy, they hit $200 without even trying. Or $300. I love turning money I’ve raised into even more money for autism charities that can use the resources. And on top of that, people who join the team get to run the race for free!

I haven’t run this race before, but I’m looking forward to it. Two of my friends and longtime Operation Jack supporters, Sarah Emerson and Danielle Sterling, rave about the scenery. They also warn of the hills but that’s OK. I’m also excited to be able to have Operation Jack participate with MDI because the race director, Gary Allen, is a charity-minded class act (and a great runner). Can’t argue about associating with people like him!

Here’s some shots of the course:

I've run through scenic spots that were much less scenic than this.
I’ve run through scenic spots that were much less scenic than this.
Views like this will make the drive from Philly worth it.
Pretty sure this is a photo. But it could be a painting.
Views like this will make the drive from Philly worth it.
Views like this will make the drive from Philly worth it.

I can handle 26.2 of that, that’s for sure.

Also, as I mentioned, I like to give out a few goodies. As I mentioned, there’s the tech shirt.

Short sleeve or sleeveless tank, take your pick. Or both. You want 'em, I'll send 'em to you.
Short sleeve or sleeveless tank, take your pick. Or both. You want ’em, I’ll send ’em to you.

 

And there’s also those canvas paintings I mentioned. I love them — I got one as an age-group award at a race in Alabama in 2010 that was put on as a fundraiser for L’Arche Mobile, which is part of an international federation of communities in which people with intellectual disabilities, can live, work and share their lives together. I order them every year as age-group awards for the Operation Jack Marathon and everybody loves them. It works as a fundraiser for L’Arche and the residents enjoy creating them.

Here’s a couple of pictures:

Front of the award, hand-made by a resident of L'Arche Mobile.
Front of the canvas, hand-made by a resident of L’Arche Mobile. This has a California theme. The ones for MDI will have a Maine theme — ocean and trees.
Bio of the artist on the back.
Bio of the artist on the back.

Join the team!

EDIT: THE TEAM HAS REACHED ITS 10-MEMBER CAPACITY. IF YOU HAVE QUESTIONS ABOUT PARTICIPATING, PLEASE EMAIL ME AT SAM@OPERATIONJACK.ORG.

To join the team, it’s simple: Go to the Operation Jack MDI team fundraising page and create a page with a minimum goal of $100. It’s about a two-minute process. I’ll contact you shortly thereafter and get your information and get you registered in the race. I’ll also send you out a tech shirt. It’s going to be an on-your-honor thing to reach your goal. You don’t have to put a credit card in and nobody is going to charge you if you don’t hit it. I trust that you’ll get there.

If you have any questions, shoot me an email at sam@operationjack.org. I’ve got 10 spots — hope to see you out there![subscribe2]

I Think I'm Losing It

Four or five years ago, my dad told me that my grandpa had the beginning stages of Alzheimer’s. So the next time I saw my grandpa, I was having a nice time visiting and he told me …

Sam, I need to tell you, it’s ok, it’s not as bad as it sounds, but I have … uh … it’s … I have … oh I don’t remember. Ask your dad, he’ll tell you what I have.

I guess the proof was in the way he told me. Now, as I’m just over six months away from turning 40 (that’s when I’m officially old, right?), I don’t have Alzheimer’s, but I think I’m definitely losing it, too. I’m just going to use Facebook to prove my case. These are all within the past 10 days.

Eight days is better than 10, I guess.
Six days is better than 10, I guess.
I was tired. Old people take naps mid-day (mid-sentence?), right?
I was tired. Old people take naps mid-day (mid-sentence?), right?
A shampooer could probably vacuum too, right?
A shampooer could probably vacuum too, right?
At least I found it eventually. OK, so I found it after I texted Tiff and she told me where it was.
At least I found it eventually. OK, so I found it after I texted Tiff and she told me where it was.
Well, I know I'd notice if she cut her hair.
Well, I know I’d notice if she cut her hair.

Reminds me of when we were living in Colorado a couple of years ago and I went out of town for a few days. I got back and she let eight days go by and finally she told me that she painted a wall in the living room when I was gone. She wanted to see how long it would take me to notice.

I guess she gave up after eight days. But she wanted me to at least go take look and tell her what I thought. So, I went in, took a look, then went back to the kitchen. And I said, “What wall did you paint?

I’m losing it. I’ve been losing it. But at least … at least … oh, I don’t remember what I was going to say. I don’t care. I’m almost old.

If you’re losing it, at least that means you had it, right?[subscribe2]

Why Counterfeit Race Bibs are NOT a Victimless Crime

Throughout the running community, it’s been pretty well publicized at this point that some folks ran with counterfeit bibs at the Boston Marathon last week. The race had the highest demand in its 118-year history after last year’s bombings created a huge desire for runners to to return and reclaim the race.

Even in just the second year of qualifying standards tightening by five minutes across the board, and an increased field size, competition was so tough that not all qualifiers made it in. Charity entries, given to Boston-area charities as a major fundraising initiative, were greater in the number of availability, but demand was so high that commitments doubled from normal levels. In all, $27.5 million was raised by the charity participants!

But still, there were more runners who wanted to participate. Traditionally, the BAA, which puts on the race, allows bandits (runners who don’t pay the entry fee). In just about any race, that’s a taboo that goes heavily against running’s unwritten code of ethics. I’ve never done it and I never will. It’s just wrong. But Boston embraces it — it’s a tradition that local bandits, typically college students, start after the entire field has gone through the start line. Usually it’s a few thousand runners and it’s a tradition that’s embraced. The BAA even factors bandits into the on-course support it provides during the race.

Edit: Somebody sent me a DM on Twitter and reminded me that back in 2011 I ran a marathon with somebody else’s bib. Full disclosure, here’s what happened, I don’t mind you judging me. A few days before the race, a friend asked me to pace him and told me he had a bib from another friend of ours who was entered in the race and not running. He was slower than me and this took the place of my training run that weekend. Without a bib that was paid for, I absolutely would not have stepped foot on the course. And without somebody providing me with a legitimate bib, I would not have participated. I have no idea what the transfer policy was — I couldn’t get up to the expo anyways, so the bib was picked up for me. To me, it was different that truly banditing (sneaking onto the course without a bib) and it was WAY different than running with a counterfeit bib. But, I did run with somebody else’s bib. So if you choose to judge me as a past bandit, I understand. This doesn’t change my opinions at all about banditing or what happened with the counterfeit bibs in Boston.

However, this year, due to dramatically increased security, the BAA announced very clearly in advance that bandits were NOT permitted. It was made very clear before the race that security measures were going to be much tighter. Bandits were not welcomed or embraced this year.

In the days after the race, though, it was discovered that some people went beyond banditing, though — they bought or created counterfeit bibs.

Here’s the highest-profile of the phonies:

This is the founder of Foursquare and his wife. His bib is real. Hers isn't.
This is the founder of Foursquare and his wife. His bib is real. Hers isn’t.

That’s the founder of Foursquare and his wife. He’s legitimately in the race, she isn’t. What’s annoying about them is their sense of entitlement. His apology was this:

I don’t expect everyone to understand our strong need to run and and finish together — but after trying unsuccessfully to get a charity number and trying unsuccessfully to officially transfer a number from an injured-runner friend, we did what we could to make sure we could run together in hopes of finishing together.

Translates to Hey, rules be damned, I did what I wanted to because I wanted to. The smugness of it all annoys me, as does the fact that it’s a lie. If it was so important to him, like he says, he would have applied for a charity bid like everybody else who went the charity route. I did that and the most important questions were how much I could commit to raise and what my fundraising plan was. Pretty sure that if he said, “I’ll raise $20,000, I own a giant social media company, I have a following on Twitter of nearly 75,000 people and I can write a check because my net worth is deep in the eight-figure range,” he would have gotten a bib.

His unsuccessful attempt to get a charity bib probably started a couple of weeks before the race. There is absolutely NO WAY they couldn’t get a charity bib at the same time that everybody else applied. So he just did what he wanted to and had a counterfeit made. The sense of entitlement and living above the rules annoys me, especially when instead of truly apologizing, he justifies it with a well, I really, really wanted to … so there.

These four people in this next picture were the first to be outed when the person with the real 14285 bib noticed these images when she went to look at her race pictures.

This made the rounds on social media last week. All of these runners were running with a counterfeit bib.
This made the rounds on social media last week. All of these runners were running with a counterfeit bib.

This created a stir within the running community. Some people argued that it was a slap in the face to those who obtained their bib in the right way. Others said that in reality, the supplies were already purchased and these folks didn’t hurt anybody. Focus on your own life and don’t worry about others, they said, this was a victimless crime.

But this was NOT a victimless crime. Even with just a handful of folks very visibly identified as using counterfeit bibs, this is now a huge problem that MUST be dealt with, otherwise it’s going to create huge problems for the race in years to come.

The BAA has no choice but to implement methods to prevent counterfeit bibs starting with next year’s race. If it doesn’t do that, a huge black market will be created. The popularity of the race grows every year, and now it’s not a secret at all participants can get through security with a fake bib. Even though just a handful of runners have faced widespread shame on social media, the damage has been done.

If the BAA chooses to announce its plan to deter counterfeits, it will have to something pretty comprehensive that begins at the transportation lines at Boston Common four hours before the start of the race. Almost certainly it’s going to have to involve something new and computerized at the bus line that involves scanning bibs or checking for timing strips on the back of bibs. Either way, it’s going to slow the process and cost money. If planners expect it will slow the process significantly, they’ll have to increase the number of buses they rent. Security will have to be increased again in Hopkinton where runners approach the starting corrals. This will also require something new and computerized, not to mention an increase in staff.

The costs for this will be passed on to legitimate entrants. If it costs $500,000 for software, staff and equipment, that’s $20 extra on the race fee for everybody right off the top. I got that number estimating 1,000 hand-held devices at $250 each, plus $100,000 for software development and 1,000 six-hour shifts at $25/hour. I’m not figuring anything for buses, but you can see how quickly you cost each participant $20.

That’s just a rough idea of a way that cracking down on counterfeit bibs could be done, but there’s no question it would take a considerable amount of money, not to mention slowing down the race-day process for legitimate participants. Absolutely not a victimless crime, and definitely not something that’s not costing anybody any money.

If the BAA does NOT come up with a comprehensive plan to deter and stop counterfeit bibs, the black market will have a year to get ready and the BAA will have to estimate how many people will be running with counterfeit bibs. Bandits have typically been about 2,000-3,000 total. If the BAA expects that many counterfeiters on the course (I’d consider that reasonable), they’ll have to increase the amount of supplies they purchase, to pay for them, and those costs will obviously be passed on to legitimate participants.

In a worst-case scenario, if they have to account for a significant number of phonies in the permit and insurance process, they might have to reduce the number of accepted entries. Say they can accommodate 27,000 participants but they know they’re going to get 3,000 rogue runners because they choose not to spend a fortune policing it. They’d have to reduce the number of participants they accept. If that comes from the group of runners who qualified based on time, then fewer would be getting in and runners who should be accepted would be left out.

If the number of charity runners is trimmed to provide cushion for counterfeits, it’s charities that will lose. More than $27M was raised this year for dozens of very worthy causes.

How the BAA approaches this is above my pay grade. There are different options that they’ll weigh. I have no idea what they’ll do. The only thing I know is that they won’t do nothing. They have to do something. And whatever that something is, it’s going to cost a lot of money and it’s probably going to create significant inconveniences for legitimate entrants. It could well cost deserving runners a chance to participate in the race. It’s very reasonable to expect that it will cost charities money. And I’d be shocked if costs don’t get passed on to runners.

These runners using phony bibs who thought they weren’t costing anybody anything? They couldn’t have been more wrong.

What do you think? Am I off my rocker? Is this a legitimate problem?[subscribe2]

Helping Others In A Different Way

On New Year’s Eve, I got a call from one of my favorite autism charities, Talk About Curing Autism, asking me if I could help out with developing a program to help people train for races as charity runners. I was flattered and honored. I mean, I’m just a guy doing my thing, trying to figure out a way one day at a time to use my hobby (running) to make some good in the world.

For them to ask me that was the coolest thing ever. First, it gives me another way to help, which I’m excited about. I can only do so much on my own, but to able to do my thing while an organization I really stand behind that has a really good reach makes the most of my ability to combine running with fighting autism? WIN! And from a selfish standpoint, it was a really awesome pat-on-the-back that they thought enough of what I’ve done with Operation Jack to ask me to help.

Just realized, in case you’re wondering, this is a volunteer role for me. I’ve never been in a paid charity role and I don’t ever want to be in a paid charity role — fighting autism through running is my hobby, and I want to keep it that way.

Anyways, I have a fair amount of running experience, and I started a Train 4 Autism running group in Orange County, Calif. that’s going really strong now, so I feel pretty comfortable with my ability to get charity running groups going. But being in more of an official role for good-sized organization like this, I didn’t feel like I was necessarily good enough to do this. When I’m doing my own thing, training myself, running my own race, the only person impacted by me is me.

However, if I’m going to coach people through an event, and they have expectations of having fun through the training process and getting to the start line and finish line healthy, that’s much more important that when I’m working towards a good race. I take that seriously, because it’s a responsibility towards another person. As much confidence as I have in my knowledge and experience, to me that just wasn’t enough. Most people would probably tell me that I’m being ridiculous thinking I’m not able to coach people through their first half-marathon or marathon, but like I said, I take my responsibility towards other people seriously.

So, I went to Chicago last month for a two-day course to get my coaching certification through the Road Runners Club of America. It was actually a pretty interesting course. I already knew a lot of the things they taught, but I learned a lot of new things, too. A lot of the course pieced together a lot of things I’ve picked up over the years through experience. I’ve mindlessly adapted to doing things certain ways and now I figured out why I do what I do. I picked up some knowledge that will eliminate some of the guesswork and “just because” stuff and in general, I feel like I understand a lot more about running and training than I used to.

I passed the exam and my coaching certification will become official once I get my first aid certification. That will be soon, probably within the next week. I’ve worked with friends in the past, but it’s always been just a matter of using my knowledge gained from experience and reading. Now, I really feel like I have a good grip on how to coach a runner through a training cycle and I’m excited to be able to help people. I’ve been working with somebody this spring and it’s been a ton of fun to watch her progress.

Like everything else since I started Operation Jack nearly five years ago, I’m going to take this new role one day at a time and see what happens. I have no clue how it will go, but things have worked themselves out and everything has been OK. Fingers crossed that trend continues, since I’m going to be responsible for coaching autism parents from the couch to their first race. It’s going to be a great opportunity to help them find a positive outlet, plus it will also help TACA. After going through that training and filling in some gaps in my knowledge, I really feel like I’m equipped to lead the way now.

That’s all I have for today. Who’s in Philly? Come out at start with us on May 4![subscribe2]