I’m Just Operation Jack, Not Superman

This is probably the last thing I should write while I’m trying to recruit people to the 6th Annual Operation Jack Marathon, Half Marathon, 5K and Virtual Runs, especially since I haven’t written a blog post in more than a year. But man, I’m cracking. Bad.

First Picture
Me and Jack after I finished the first Operation Jack Marathon.

Operation Jack, since it’s an always-evolving thing, and I never know who’s coming or going or aware of the past, is my way of doing what I can to fight autism. I’m just a guy, a father of three, and Jack, my middle child, is a severely autistic 12-year-old. This morning, he had severe, self-injurious meltdowns. He’s barely verbal. In fact, just two nights ago, 12 years and three months (minus a day) after he was born, he called me “Daddy” for the first time ever. Heck of a milestone, but to say it’s been painfully tough raising him would be an understatement.

Back in the spring of 2009, when I was a seemingly-young 34 and he was a 5 ½-year-old and I was trying to find a purpose for the severe early-childhood difficulties he was going through, I came up with some crazy idea of running 60 full marathons in a year (2010) to raise money for an autism charity. That would be my way of contributing to the cause and doing my part. I felt like it was my obligation to try to do something to try to make the world better. Running was my gift I could use. Hopefully it would raise money and help kids. Jack’s suffering would thereby help other kids and he’d make a difference in this world. Life would get back to normal (whatever that is) in 2011.

That’s not how it worked, though. I did run 60 (actually 61) marathons in 2010. But we ended up creating something called the Operation Jack Marathon out of necessity at the end of the year. With six weeks of planning and recruiting, we registered 151 runners and had about 200 more participate virtually in 46 states across the country. People asked me to put it on again the next year and I figured, why not? I could continue to raise money for charity. That first year brought in about $88,000 total (due primarily to the 61-marathon stunt and the donations that came from people throughout the year). The race brought in maybe $40K the second year and I did a few other things, raising money to fight cancer and putting on a small race to benefit the families of mortally-wounded troops.

Life took over in 2012 and we relocated to Colorado, thanks in no small part to autism. I still worked to do what I could to raise money and put on events, adding a new race in Kansas City to go along with the primary race in Los Angeles. 2012 was the worst year of my life, completely because of autism, but Operation Jack gave me a positive outlet. In 2013 we relocated to Pennsylvania, 100 percent because of autism, and life continues to be a grind. But I keep doing what I can with Operation Jack. I added a race in Las Vegas, somebody in Pennsylvania found me and I help her put on an annual event and build a few teams to raise money for charities out here. I’ve built an annual team at a race in Maine to raise money for charities there.

I guess I need to clarify, just in case, that the Operation Jack Autism Foundation is a 501(c)3 public tax-exempt charity recognized by the IRS and all that kind of stuff, with no staff, no office, and the purpose is to raise money for autism-related charities and to help parents and those affected by autism to find a positive outlet. None of the money raised benefits me or my family directly or indirectly at all. It’s just a sacrifice we make to try to help others.

I’ll be very blunt, though. Despite what looks like a success on paper (I’d estimate more than $200K has been donated to charities over the years), I have no clue what I’m doing and I feel pretty incapable. I try, though. I want this to do well.

Oh, and the reason I mentioned that Operation Jack is a foundation is that I was just thinking about it in this perspective on my way to work this morning, but Operation Jack is also my super hero alter-ego. I’m Sam Felsenfeld by day. I’m Clark Kent, a web developer working for a very large company sitting in a cubicle writing code all day. That’s what puts the food on the table. I eat that food with my other two kids if I get home in time, then maybe play a game or something, and then when the kids go to bed, I become Operation Jack. I want to help. I want to do good. But I am so terrible at this.

My organization skills are terrible. I’m overwhelmed and I dread answering to what seems like a million people I’m letting down. I have some pretty complicated problems of my own I’m desperately trying to deal with. Depression, lack of motivation, fears of everybody being angry with me … you name it, it’s probably bothering me. My wife is worried about me, probably rightly so. I’m working on getting help, but I’m breaking down and falling apart. I don’t like who I am. I haven’t for years. I just want to crawl into a hole and disappear and I don’t really know why. I may be dwelling on it too much and making myself think this way. I don’t know.

Anyways, the reason I’m writing this, and again, I know it’s terrible to do so while I’m trying to reach people to support this event and this cause, but every year around this time, I start thinking, “I have to stop doing this. This has to be the end.” And those thoughts are really, really strong this year. I’m totally falling apart mentally. Although I just can’t imagine giving up my alter-ego, because once I do, it’s gone for good, and it’s become such a huge part of me.

But I just feel like being as real as I can. I like people to know who and what they’re supporting. I feel like it’s wrong to do anything else. No matter what, you absolutely are raising money for small autism-related charities in need by participating. But you’re also backing the efforts of an autism dad who’s trying to help, and I feel like you should know who that dad is.

I’m getting on a plane in Philly with my oldest son Benjamin on Christmas night and we’ll be in Los Angeles for the 6th Annual Operation Jack Marathon the next morning. I have no idea if it’s going to be the last one. I tell myself I don’t want it to be, because I enjoy being able to help, I like the positives that come from it all. But I don’t know if I can pick myself up and continue to do this. I upset myself a lot over this. I let others down with this. I just don’t know if I can go on. And I can’t just stand here with a phony happy face.

I’ve been starting to tell people this might be it, which I guess makes this no different than any other December. Except that inside, I feel a lot worse than I ever have before. So, I guess, just in case I don’t do my annual mind-change the day after the race, I want to sincerely thank everybody who has participated and supported what I’ve tried to do over the years. Words can’t really explain it, so I won’t even begin to try. But thank you.

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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Doing as Well as Reasonably Possible

I should blog more often. It gives my wife something to read and it’s fun (or sometimes painful) to have something to look back at to remember what you’ve been through. Raising three kids, one of them severely autistic, and working full time and trying to run a charity makes everything fly by in a blur.

Speaking of flying by in a blur, today marks 11 months since I arrived in Pennsylvania. I can’t believe it’s almost been a year. In case you’ve never been to this site, here’s three quick links that explain the story:

OK, that out of the way, everybody I talk to, be it face-to-face, text, email, Facebook, Twitter, whatever — one question I get a lot is, “How are things in Pennsylvania?” For the amount of people who ask me that question, I have to imagine that those of you who have followed along off and on over the past four or five years might be asking the same question. I don’t blog as much as I used to, and we picked this state without even seeing it because we thought it would be the best situation in the lower 48 for our kids.

So, 11 months in (seven for my family — they didn’t get here until July), how are things?

We’re doing as well as reasonably possible.

I’d love to sit here and say life is great. And, well, I guess it is. It’s difficult. But I wouldn’t trade my path for anything, aside from Jack’s autism. But everything we hoped Pennsylvania would be when we chose it a year ago, sight unseen? So far, so good. It’s what we’d hoped it would be. Cost of living and the job are in place, although I got a job because we needed to move. We didn’t move because I got a job.

The services here are what we were told they would be. The collaboration has been what we were told it would be. Jack’s teacher is as awesome as we were told she would be. She cares about him, which isn’t something I can say about the folks at the school in Colorado. We love the neighborhood and the town we live in, we have nice neighbors we feel comfortable and there’s kids everywhere. We miss our neighbors in Colorado, but we did what we had to do for our kids and here we are.

That doesn’t mean that everything is fantastic, though. Jack still has serious separation issues from Tiffany, which I blame on what they went through in Colorado. He has meltdowns daily. There’s plenty of this:

This was Sunday. But this could have been taken yesterday or Saturday, too.
This was Sunday. But this could have been taken Monday or Saturday, too.

He still has issues with his gut and self-injurious behaviors. Tiff just a great job pressing forward to constantly learn more about what he can and can’t handle, but there’s still a ways to go. It’s heartbreaking to see a 10-year-old suffer the way he does on a daily basis. But that would be the case no matter where lived. Everything we thought would be a positive about Pennsylvania has been a reality so far. And there’s still plenty of this:

I love me a happy Jack!
I love me a happy Jack!

And we just had something cool happen tonight:

Is it unreasonable to dream of your kids playing with each other?
Is it unreasonable to dream of your kids playing with each other?

The five of us still have plenty of challenges — more than our fair share in my opinion. But we are in the right spot. Pennsylvania is everything we’d hoped it would be. So about a year after we decided another relocation was in order, that’s how we’re doing — as well as reasonably possible.[subscribe2]

 

Jack Got In For Boston!

As a marathon runner, getting into the Boston Marathon is a goal of mine every year. For my 10-year-old son Jack, who is severely autistic, that’s not so much the case. However, we’ve been working for years to get him in for Boston and today is finally his day.

For him, Boston means Massachusetts General Hospital, where there are some world-class gastroenterologists who focus on kids with autism and specialize in what troubles Jack. In addition to all the problems with his brain, he has severe problems with leaky gut. His food allergy list is ridiculous and it’s a daily battle to keep him from being in pain with every meal he eats. Throw in the communication problem (he can’t tell us what bothers him) and it’s a pretty bad situation.

We’re hoping for answers, and while today is just an initial eval, we’re praying it’s a step in the right direction. I’m sure me or my wife Tiffany will post more soon. She’s up in Boston with him today. I’m holding down the fort with our other two kids.

Side note, when I took my daughter to the bus stop, a fellow parent asked me how Jack was doing. I had no choice but to show her a picture Tiff had texted me moments before. I’d say he’s doing pretty good!

Breakfast in bed in a hotel room with a harbor view. Aside from the autism, life is good.
Breakfast in bed in a hotel room with a teddy bear and a harbor view. Aside from the autism, life is good!

OK, that’s all for now. Have a good day!

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I'm Gonna (Try To) Be Mr. Mom

I’m just posting here so that there’s a public record. I’m concerned for my safety and I figure that if something happens to me and nobody ever sees or hears from me again, the police will come look at my blog and know who to investigate:

My kids.

My wife is going out of town — heck, she’s going out of time zone — for a few days this week. She’s going to visit her sister and I’m watching the kids. All three of them. All three of them. There’s three of them. They’re gonna kill me.

I’m happy for Tiff. This is going to be a good trip for her and her sister and there’s three of these little people running around my house. I know that normally, taking care of the kids is not a big deal and it’s just something that dads do. But as you know if you’ve ever been here before, I have a severely autistic son named Jack (quick plug: Operation Jack), and he’s got a heck of a routine. I have four typed pages on the refrigerator on the step-by-steps for him. I have huge respect for the job Tiff does with Jack every day — she has it down to a science and does an amazing job. I’m really going to have huge respect for her after going through about four days of this routine.

How to take care of Jack.
How to take care of Jack.

Then there’s the other two kids. To say I’m intimidated by this is an understatement. I know, it sounds stupid. A dad should be able to take care of his three kids, especially if he’s been a dad for 12 years. Really, it’s just Jack. With everything he’s been through over the past year, he’s really become dependent on Tiff and they have his incredibly detailed daily routine down pat. We both do a lot of things to keep our family going and she definitely handles taking care of Jack.

It will be pretty challenging for me and I’m nervous about this and even though she hasn’t even left yet, I can’t wait for her to get back. It will be nice, though, to spend more time than I normally do with Jack. Ben and Ava will be fine. We’ll all (probably) survive. Well, maybe.

Operation Jack Stuff

OK, I haven’t mentioned this for a while, but I’m trying to recruit people to run races next year and pick charities for me to give money to.

Elevator pitch: If you raise money for an autism-related charity (your choice!) equal to the cost of your race entry, I’ll cover your race entry. If you’d rather just donate money to an autism-related charity equal to the cost of your race entry, I’ll cover your race entry. I will cover your choice of a race entry or a donation to charity and either way, there’s no cost to you. And I’m going to throw in a custom Operation Jack shirt and medal as a bonus. This is my way of getting people involved and letting you pick what charities the Operation Jack Autism Foundation will donate to. Click here for the details. No risk, no cost, help me fill up my list!

Operation Jack Marathon Stuff

We’re going to run a discount code this Wednesday through Sunday. Come back here or check out the Operation Jack Marathon Facebook page for the discount code!

Ahh, I love it when Jack is happy ...
Ahh, I love it when Jack is happy and we can take a picture …

Ok, that’s all I have for today … if I have time to write a blog tonight, I have some rad pics from a trip to an amusement park on Saturday. Have a great Monday![subscribe2]