Operation Jack

Fighting autism, one mile at a time.

How Autism Sucked Yesterday

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I always wonder what the best approach to take is for my blog. Do I talk about autism, since that consumes my world and is the reason for this site? Do I talk about running, since I’ve done a lot of that and have a background and training regimen that’s a lot different than most runners out there? Or do I just talk about how my alma mater, Kansas State, beat Oklahoma on Saturday?

Well, I think the running stuff is boring. Nobody really cares about how hard I hit hills or when I foam roll. And as much as I could go on and on about K-State, that’s what the site I linked to is for. So, I’m going to talk about autism. I don’t have anything specific or deep to talk about, so I’m just going to make this like a journal entry. Today’s journal entry will be about how autism impacted me yesterday.

Just in case you’ve never been here before, my 9-year-old son Jack is severely autistic. Not really talking, still in diapers, all sorts of problems. I didn’t want his struggles to go for nothing, so I started a foundation in his name and ran 61 marathons in 2010 to try to raise money and awareness for a charity I’m a part of called Train 4 Autism. Now, I just keep heading down the path I’m on, no clue where I’m going, still doing whatever I can to help Jack and other kids out there with autism.

Anyways, my diary entry.

How Autism Sucked Today

Today, autism started to suck at 4:30 a.m., the moment Jack woke me up. He decided 7.5 hours of sleep was enough and started turning on lights, looking for his iPad. I stayed with him in his room and tried to get him to go back to sleep, but that didn’t happen. A little before 6 a.m., something upset him (no clue what) and he started the self-injurious behaviors he’s been doing a lot of lately.

First, he started with rapid-fire punches to his own head. I stopped them pretty quickly and he only landed a couple, but he then started kicking his feet together pretty hard and started crying. My wife Tiffany heard him and came into the room, not knowing I was in there. She thought I was out running, but as has been the case a lot lately, I skipped it to take care of him.

She took over, but I didn’t go back to sleep. I was up for good. But tired. The rest of the morning was fairly uneventful and I got ready for work. Tiff was crying and talking to me. She was extremely upset, sobbing, “This isn’t right! He could have been somebody’s husband! He could have been somebody’s dad!”

She’s right, because those are two things that he almost certainly won’t ever be, but I always try to focus on the path we’re on, not the path we could have been on. He was pretty calm the rest of the morning and I went to work. We’re dealing with some issues for Jack and I’m waiting for some emails. I keep an eye on my phone and saw one I wasn’t expecting. Tiff immediately made a call that lasted 90 minutes and told me to call her for five minutes when I could.

Five minutes turned into 20 and I was getting frustrated. I felt like she was repeating the same thing over and over. But I listened and eventually told her I had to get back to work. I kept checking my email, but never saw what I was waiting for. I’m pretty concerned about that, but I’m pretty concerned about a lot of things.

Tiff started texting me some more about these same issues involving Jack — she’s very concerned and very upset. We kept going around and around in circles and finally I told her “ok ok ok ok” because I just wanted to move on with the conversation. Apparently, that ended the conversation.

After work, I was going to go to the gym because I didn’t exercise in the morning. Normally, Tiff doesn’t mind. I called her up, but we were talking about these issues with Jack some more. I sat in the parking lot at my work talking to her, but after 7 minutes, I just decided to start driving home. This conversation wasn’t ending and it was more important than going to the gym. Eventually she told me it was OK to go, but I was already on my way home. Oh well, not that big of a deal. But what’s one day? Thanks, though, autism.

I ate my dinner when I got home and then Jack started getting upset and slamming his iPad into his head. I sat with him and tried to restrain him and calm him down. It wasn’t much use. I was able to keep him from punching himself and I got him in his padded helmet, but he started kicking. Eventually, he got up and stomped his heel right into my left big toe. He didn’t mean to hurt me, but man … he sure did.

Tiff and I started up with the conversation again about these imminent issues we have because of Jack’s autism. It turned into an argument. It moved from the playroom to the front porch to the kitchen. I started reading some documents, but then stopped. I’m sick of this subject. It’s all we’ve been talking about for the past few days. I feel heartless for saying that, but my goodness, there has to be more to life than this.

We were still arguing a little bit about this when we went upstairs to put the kids to bed, but we got over it and came to an agreement. I put Ava to bed and then was in Ben’s room for a bit while Tiff was trying to get Jack down to sleep, about 16 hours after the day began.

She finally came out and started sobbing uncontrollably, explaining to me how afraid she is for Jack and the way he’s been harming himself so much lately. We both try our best to stop it, but it happens so quick and he’s getting so strong. She’s afraid that one day, he’s going to hit his head into concrete out of nowhere and kill himself. It sounds dramatic, but she has a point.

We’re slaves to him. He can’t be left unattended. She’s more overprotective of him than I can possibly explain, but that’s because he’s a non-verbal 9-year-old who injures himself every day. He’s our baby and he wasn’t born this way and he doesn’t deserve this. So, she’s very protective of him and emotional about it. I’m numb to the pain and just try my best to fight for all of us.

By 9 p.m., we were down on the couch relaxing and hoping Jack wouldn’t wake up. Tiff vegged to some Real Housewives show and I wrote a blog before making a root beer float and calling it a night.

Just another day in the books. Typical. That’s how autism sucked today. Hopefully tomorrow is better. But I’m not holding my breath.

On the bright side, Jack got his hair cut yesterday. Isn’t he cute? Too bad he has that self-inflicted bruise on his forehead. Poor little guy.

My homeboy!

Making A Difference

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OK, so, I’m in serious danger of writing a really long, rambling blog today. I’m so, so excited about what I’m going to write about and I have to tell some backstory and I can get wordy and I don’t want anybody to start reading this and not finish and I need to make sure that I explain this right and

Breathe, Sam. Just breathe.

Backstory

OK, here we go. First, some quick backstory. I launched this site on July 1, 2009. Operation Jack. It’s my mission. It’s named that after my son, Jack. He’s 9 now and severely autistic. Still in diapers, still having meltdowns, still barely communicating. But he’s making progress. He’s probably going to struggle his entire life. I decided in 2008 that I wanted to try to make some good come out of his struggles. I brainstormed for months and months and finally came up with an idea: I liked running a lot of marathons and running them without much recovery time, so I figured I’d run a ton in 2010 as a way to raise money for charity.

I ran 61 marathons and two ultramarathons in 2010 and went as hard as I could every time. At least one every week, sometimes two and one time three. I did this to raise money and awareness for a charity I’m a part of called Train 4 Autism. When I found T4A, I fell in love with its model. It’s run on an all-volunteer basis, basically by parents for parents. What we do is help people raise money for the autism-related charity of their choice through the event of their choice. We give them coaching, motivation, groups to train with and all sorts of support. They raise money for the local autism-related charity of their choice, getting off their couch and making the world a better place, typically in honor of their child with autism.

Everybody makes friends and has a great time and at the end of it all, kids with autism benefit from all of this, because small local charities (of the participant’s choosing) are the beneficiaries. We don’t do research or anything like that. Quite simply, we help people who are struggling inject a big positive into their life while they raise money for great charities that need help . The money we spend is good money going after a lot more good money. Capitalism, and we don’t even have payroll!

There’s seven of us (I think it’s seven) on the board that pour every spare ounce of energy we have into this. It’s been a dream of ours to grow Train 4 Autism. It was a dream of mine when I started Operation Jack to make a difference in the world. Really, who doesn’t want to make the world a better place?

Through my fundraising in 2010, some fundraising in 2011 and the 2010-2012 Operation Jack Marathons, the gross total is somewhere (I think?) in the $145,000 neighborhood? There have been expenses, but it’s still a lot of money raised. But the thing is, I never really know if or how I’ve made a difference. If I had a nickel for every time somebody told me I inspired them, I’d be a rich man. Compliments don’t build anything, though, and I’ve always wanted to see something change for the better.

End of backstory

So Tuesday, something was just confirmed to me that is like the biggest dose of caffeine I’ve had in my life. For every dollar raised through Train 4 Autism, 5.5 percent goes towards the website and credit card fees (the actual cost of the expense for us), 9.5 percent stays with Train 4 Autism (we use that for support and growth) and 85 percent goes to the beneficiary of the participant’s choice.

We get a lot of bang for our buck, because we’re all volunteers. The board members I mentioned — there’s not enough adequate words to describe our passion. We all have different roles and strengths and weaknesses. My strength has been raising money (yay Operation Jack!) and when I haven’t been too overrun in every other facet of my life, I’ve helped with some technical things with the website we use. My weaknesses are that I bite off more than I can chew and I can be a jerk when I get angry about something I care about. Not in that order.

Me and Train 4 Autism founder Ben Fesagaiga (and a whole lot of shadows) after the 2010 Surf City Marathon.

Back to the point, I just found out yesterday that we’ve raised enough money and we have enough people raising money directly for Train 4 Autism that we’re going to go on a one-year trial run of not collecting that 9.5 percent! So, for every $100 raised, 5.5 goes for the website/credit card fees (our out-of-pocket) and 94.5 goes to the beneficiary!

I am SO excited about this for several reasons.

First, this is going to be huge for participants and the small, local charities they’re trying to help. So much of the money is going to stay with the charities that need it. We like to feel like we help the little guys, and this is a big, big win for the little guys. This should help boost participation, because the incentive is that much greater now. We’re going to encourage more people and help more people. That’s what we like to do and that’s what we’re going to be able to do more of!

My dream back when I started Operation Jack was to make the world a better place for kids with autism and the way I figured I could do that is that I would help Train 4 Autism grow. I believe in Train 4 Autism and I thought that I could help provide a spark that would help with long-term growth. I wanted to be a part of it from the beginning and do what I do best to help and I feel like I’ve done that. I feel like what I’ve done has helped, and while it’s been a team effort (thank goodness, because it would have failed if it was just me), I had a legitimate role on a great team that won.

To me, this is validation of everything I’ve done over the past three years — from the ridiculous physical pounding I put my body through to all the time, plus the energy and emotion invested in everything. My efforts to make a difference have made a difference. And at the very basic root of all of this is Jack. Without what he goes through, I wouldn’t have done any of this. From the beginning, this has been my way to make sure the makes a difference in this world. I know my fellow board members feel the same way about their kids.

I focus a lot one what I need to do — write a blog here, follow up on ordering medals there, etc. But right now, when I take a moment to pause from that and think about my Jack, who’s up in his room sleeping peacefully right now as no idea about any of the things I do, it brings me a lot of joy. He inspired me to take a chance on trying something big, which has taken a lot out of me, and as satisfying as it is to work really, really, hard, it’s even more satisfying when it pays off.

It’s so awesome to be a part of something from the beginning as it grows, especially a charity that helps kids all over the country who struggle with autism. So, I’m super crazy excited right now. We’re doing this. We’re living the nightmare with autism, but we’re living the dream with Train 4 Autism. Ben Fesagaiga and Brian Thompson started Train 4 Autism, then we jumped on board and we’re all making it happen together. I’m so proud to be a part of this!

Since 2009, two Bible verses have driven me through my efforts with Operation Jack.

• 1 Peter 4:10, Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms.

• Galatians 6:9 Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.

Those have driven me and they both seem so incredibly true to me. I’ve struggled a lot lately with some many things going on in my life, especially issues Jack is having, but I’m really happy today. I finally know for certain I’m making the world a better place.

What Can You Do?

Well, as always, I’ll repeat my call to get you involved with Train 4 Autism. There are multiple ways to do this. You can pick the local event of your choice or you can pick one that’s one of our main events that we’ll have a bigger group at. You can set up a fundraising site for the autism-related non-profit of your choice in minutes.

Another model, if you’re a little more daring, is to put on a small race or walk in your area to benefit the organization of your choosing. This is something else we do and we’ve helped quite a few organizations raise quite a bit of money doing this. All you have to do is tell us you want to do it. We’ll get you set up with a race website, including registration and fundraising pages, plus we’ll help you with all the logistics planning the race all the way through to race day. This is getting formulaic for us and it’s a great way to boost community involvement in your area. Do it once and do it right and you’ll be set up with a blueprint for a great annual fundraiser

Also, you can get involved with me under my Operation Jack umbrella. I raise money similarly to how Train 4 Autism raises money. I use a little bit of money to try to raise a lot more money. The big bulk of what I raise goes to the autism-related beneficiary of my choice, which in my case is Train 4 Autism. I have a program called Race 4 Free you can look at. It’s an easy way to participate and do a good thing, there’s a very low fundraising threshold, there’s no commitment required and you get a free race entry out of the deal. WIN!

One more thing to plug and then I promise I’ll call it quits: I have a supporter named Pam Gordon who is raising money for Operation Jack as she trains for her first marathon. She’s doing the Race 4 Free option I just mentioned and is doing a virtual 5K as a fundraiser. Take a quick jump here and consider it!

OK, that’s all for today. Sorry about the super-long post. If you actually made it down this far, thank you for reading! Have a great weekend!

Jack's Birthday Recap

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If you’ve never been here before, you’re probably wondering who Jack is or why I’m talking about his birthday, CLICK HERE to see what Operation Jack is and why I started a foundation in his name. Hint: poor little guy is severely autistic.

Robbed On Your Birthday

My wife Tiffany wrote a great blog yesterday. It’s tough posting on a Sunday and getting people to read it, so I’m linking to it for her. Go take a look, everybody who saw it thought it was a good read. It’s definitely better than the rest of this blog, so if your time is pretty limited, click that link.

Birthday Breakfast Of Champions

Jack likes bacon. Bacon for breakfast for Jack — it’s as sure as death and taxes. So his birthday breakfast was no different, except his bacon had a candle in it!

He seems happy …
I hope his wish is to be able to tell me what his wish is.

 

Jack’s Birthday Party

So, Tiff decided kind of last-minute to have a birthday party for Jack. In a way, it’s a lost cause. He doesn’t really understand it’s his birthday, although he does have fun blowing out candles after people sing Happy Birthday to him. And we feel like he deserves a celebration just like any other kid. So we got some balloons, a cake, cupcakes, frosted cookies, candy, ice cream and about eight or so neighborhood kids to come over.

It was loud. He enjoyed it. We sang Happy Birthday to him about three more times. He loved it so we just kept re-lighting the candles. The kids all had fun getting hyped up on sugar. We had a helper over for Jack and she ran around having fun with him. All the girls went upstairs to Ava’s room to play and when they came downstairs, they had all colored themselves with markers. Kind of reminds me of when I drank too much back in college. All-in-all, the kids all had a blast and Jack had a fun time. And that’s all that really matters, because it was his birthday.

I love me a happy Jack! The ironic thing is that he couldn’t even have any of this cake because it wasn’t gluten-free. But we had gluten-free cupcakes that he enjoyed. He ate two and loved them!
2nd and 10 from the 42. Looks like I missed that play. What happened?

 

Copycat Game

Jack had a blast playing a copycat game with Ben and Ava. I videotaped too late because there was a point where he was slapping the garage door over and over saying “uh-oh!” and laughing hysterically. He did it once, at about :37 into this, but not the same. But still, you can tell, he had a good time, and he was way too wound up.

Best Part Of The Day

When it was time for bed, he wanted his teddy bear that he always sleeps with, “Temmy.” We’ve been calling him that since about 2006 because that’s how he pronounced “teddy” when he tried to say it. We couldn’t find it so I spent an hour looking for it all over the house, in the cars, in the garage, in the backyard, and then everywhere again a second time and a third time. Finally, after an hour, I found it in some bushes beneath a deck in the backyard. OK, so the headline for this segment is a lie. It wasn’t really the best part of the day.

I Lived It Up, Too

Breakfast: Two donuts and 40 oz. of black coffee.

Lunch: Chips with swiss cheese/horseradish dip, cheese dog, chips with melted cheddar.

Snack: Chips. Birthday cake. Frosted cookie.

Dinner: Oops, never got around to it.

Dessert: Vanilla ice cream.

Plugging A Plug

A group called Team Enofuse is plugging me today, so I’m returning the favor. They’re right up Operation Jack’s alley, so hopefully in the future we’ll be able to work together and get some good things done. Anyways, they’re here … go give ’em a like!

OK, that’s all for today. What was the highlight of your weekend? Did you eat as healthy as I did? I had chips for dinner (plus some meatballs and brownies) on Saturday night, too, but don’t tell my wife. Have a great Monday!

A Bittersweet Birthday

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Well, here we go. Another year, another birthday for Jack, another birthday he won’t even know he’s having, another part of his childhood he’s not getting.

Jack, in case you don’t know, is my middle child. He’s the name behind Operation Jack, the name of my mission and my foundation and this site and the reason for everything good I’m going to try to do between now and the day I take my final breath. He’s severely autistic, still in diapers, still not really talking. He cries every day and has frequent meltdowns and wears a padded helmet at the dinner table to protect himself from himself.

On Sunday, he’s turning 9, not that he knows. Shoot, he doesn’t know he’s 8 or that he gets older. He knows the happy birthday song, but lately he doesn’t much like it. We’ll see what he thinks when we sing it for him this weekend. There won’t be a big party for him, because we’re in Colorado now and the rest of the family is in California. It doesn’t much matter, though — when we used to have parties for him, he’d just space off and do his own thing. He didn’t know or care that there was a party going on. Actually, he does like blowing out candles on a cake whether or not it’s his, even though I’d seriously doubt he understands the significance.

Jack on his 7th birthday.

Actually, Tiffany is planning on doing something for him with the kids in the neighborhood to celebrate anyways. I’m not sure what — Tiff plans that stuff and I go along for the ride. We want to do something to celebrate, even if he doesn’t know. He’s a special little guy who works hard and deserves something. She’s talked about baking something and having all the kids play. He’ll have something gluten-free and casein-free because his damaged insides have forced him into a very limited diet.

It’s kind of bittersweet celebrating his birthday. On one hand, we love him and he’s just as much our child as Ben and Ava. He’s a human being and just as worthy of a celebration. But on the flip side, it’s a killer that he has no clue. It’s like he’s on a hidden-camera show, not knowing what’s going on but everybody else is in on it.

This one will be tough, just because of the math of it. He’s turning 9, 50 percent of the way to 18. The sands in the hourglass that is his childhood keep falling to the bottom and the majority is now on the bottom. We keep fighting for him, trying everything we can to make things better. We got into battles on his behalf as recently as yesterday. We keep thinking the day is going to come that he’s going to get better. But there’s no denying, at this point, that he’s had a joyless childhood and it’s halfway gone. I remember my 9th birthday — I had a party at Skateway with 30 kids from my class at school. Jack not being aware of his birthday is just another reminder that his childhood has been ruined.

When he was 5, we thought he was going to talk by 8. Now that he’s 9, I’m guessing that maybe we’ll converse with him by the time he’s 11? Talking is going to be the biggest key, because we’ll know what’s upsetting him and what’s on his mind. It will decrease his frustrations and self-injurious behaviors. I can’t imagine it’s going to happen by his next birthday. But we’ll celebrate it anyways. Even if he won’t know it’s hist birthday, he deserves the celebration.

Five Things Wednesday … FTW?

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Normally I go with a Three Things Thursday on Thursday, but I’m not doing that this week because I have something different I want to write for tomorrow. So, I’m going with Five Things Wednesday. Because, well, why not?

Real quick, if you’ve never been here or don’t know what “Operation Jack” is, click here. Now, Five Things Wednesday. FTW.

1. Jack is doing better

I wrote a blog last week about some struggles we’ve had lately with Jack and how it really wearing us down. I got a lot of feedback from y’all and while I didn’t get back to most of you, that was because I was really struggling emotionally with what we were going through and I didn’t want to talk much about it after I wrote that blog. It’s hard to explain, but the blog was kind of like a “Dear Diary” thing for me, but I was done talking about it after that.

Your feedback was really nice, though, and lifted me up. I really appreciate it. Jack has turned the corner and is sleeping and we’re not as miserable as we were. It’s still a challenge — now he’s into staying up and giggling until 10 p.m., but that beats the heck out of middle-of-the-night meltdowns.

Thanks again for all the feedback here, on Twitter and on Facebook. Gave me a nice lift.

2. Friday Night Lights

Last Friday I had a moment I’d been looking forward to for the past decade. I took my oldest son Benjamin to his first high school football game! Now, we don’t live in a small town in a Colorado, but there’s more of a community feel here than there was in California. Seemed like everybody was there, and it was a rivalry game — the two high schools in this city were playing each other. “Our” high school is ranked a little lower than the other high school, but they won 17-14 on a wobbly 39-yard field goal that barely made it over the crossbar with two seconds left to play. I couldn’t have written the script any better!

This was our view. The stadium backs up to Main Street. I think everybody should live in a city where the high school football stadium backs up to Main Street.

3. Truly making an impact!

As I mentioned here several times over the past few months, my friend Jonathan Gunderson put on a race in San Francisco on Saturday to raise money for the World Harvest Mission to build wells for villages in Uganda that don’t have clean water. Well, he raised enough money to build nine wells for villages in need!

4. I’m a jerk

I saw this posted by a friend of mine on Facebook the other night and couldn’t help but to … well, be a jerk I guess.

5. I have no game

Played Chutes and Ladders Monday night against my daughter Ava. Lost. Played her again. Lost again. Played Candy Land. Lost. So I sent her up to bed.

OK, that’s all for today. Am I a jerk? Is there anything more American than high school football on Friday nights? How good are you at Chutes and Ladders? Have a great Wednesday!