Operation Jack

Fighting autism, one mile at a time.

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Random Ramblings For Wednesday

August 18, 2010 by operationjack 6 Comments

Normally, I’m pretty formulaic with my blogs, which makes it easier for me to tell you about the most important things involving Operation Jack. But sometimes I think back to when I put this blog on here, and the purpose I had in my mind was to give you the opportunity to know what it’s like to be me and go through this whole “61 marathons while maintaining some kind of life” thing. So today, I’m just going to run down some random thoughts, pretty much like I’m writing in my journal at the end of the day. I’ll just talk about yesterday.

The main thing sticking in my mind is dinner. I got home and we were all set to have a nice dinner. Tiff made veggie burgers — she saw a show about meat on Oprah that grossed her out and she’s sticking away from meat a little bit. As much as I talk about all the cheeseburgers I like to eat, it really doesn’t bother me to eat a veggie burger. It’s only a meal, and there’s no crime in being healthy. I should be a little bit healthier and drop some pounds. Maybe I’d run a little faster!

Anyways, it was pretty good and Benjamin and Ava were even eating their veggie burgers (they thought it was just a regular burger). But then Jack came down for dinner and he was really picky. Tiff had to try several different things for him. He ended up eating gluten-free pancakes. This isn’t terribly out of the ordinary, but every here and there she loses it and gets really upset. And that was what happened last night.

With Jack’s therapist right there, she start crying about how she’s sick of our family dinner being a therapy session every night. She said she’s sick of every outing to the grocery store being a therapy session. I just started cleaning up the kitchen to stay busy because it was kind of awkward. I keep most of my sadness inside, but she’s not like that. She’ll let it out. And when she gets upset, it just breaks my heart.

There’s nothing I can do. I can’t tell her that it’s OK, because it’s not. I can’t tell her not to cry, because if that’s what she feels, then that’s what she can do. All I can do is clean the kitchen and look at the situation and think about how much I wish we had a normal family life. But we don’t.

Jack eventually ate OK, had a decent night, and Ben and Ava had a fun little “sleepover” in our playroom in their sleeping bags. I fell asleep on the couch for a little while because I’m still recovering from the red-eye flight I took Sunday night/Monday morning.

The one thing pertaining to Operation Jack that happened yesterday was I finally finalized the rest of my schedule for the year. I had an open date on the weekend of October 23/24, but I picked the Mankato Marathon in Mankato, Minnesota. There wasn’t a whole lot on the schedule that weekend, and I have some friends who will be there for that one. Plus, as silly as this sounds, I’m Silver Medallion with Delta (puts me at the front of the line for free first-class upgrades) and Delta is what you take to Minnesota.

For Thanksgiving weekend, I was going to run Atlanta on Thanksgiving morning and then fly back in time to have dinner with my family. My mom lives in Atlanta, so I would have been able to see her the night before. Atlanta canceled the marathon, though, so she was bummed and I was trying to decide between races in Seattle, Mississippi and Florida. Runner’s World was asking me about that race, because they’re finalizing whatever they’re running on me in the November issue, and they noticed that gap.

So, I picked … Baltimore! I found one out there, and normally, my mom goes out and spends Thanksgiving with my uncle (her brother) out there. This year, they were just going to do Thanksgiving in Atlanta instead. So, I’ll head out there on the Friday, run the race Saturday morning, then fly back that night. The airfare is actually cheaper than Seattle and Florida and I won’t need a hotel. And of course, I’ll get to see family. Win-win-win. And the biggest win is that FINALLY I don’t have to worry about my schedule any more!

The World Through Jack’s Eyes
Jack likes to take pictures using Tiff’s iPhone. So, I thought I’d run four of them in here today.


He lined up these three little toy bears he likes.

A, uh, different view of the bears.

He lined up some numbers in order and then took a picture.

His three favorite stuffed friends.

That’s pretty much it for today. Hope you have a great Wednesday!

Filed Under: Uncategorized

Three Cool Things For Summer

August 11, 2010 by operationjack 2 Comments

Since it’s the middle of the summer and it’s hot everywhere, I figured I needed something cool for my blog today. So, I have details about a cool fundraiser we’re doing in October, a cool story about Jack from Tiff and a cool video of Jack from last week.

First, just in case you’ve never been here before, Click here to see why I’m running 61 marathons this year to raise money and awareness for a charity called Train 4 Autism. So far, I’m through 37. I mention Tiff and Jack in this blog a fair amount. Tiff is my wife of the past 11 years and Jack is my middle child. He’s 6 1/2 and severely autistic.

We’re Having A Really Cool Fundraiser In St. Louis October 2!
On October 2 at a sports bar called Hot Shots in St. Louis suburb Fenton, at least two members of the St. Louis Cardinals will be signing autographs as part of an Operation Jack fundraiser. Second baseman Skip Schumaker and starting pitcher Adam Wainwright will both be there. More players could be announced at a later date.

Schumaker was 10th in the National League in batting in 2008 and has finished with a batting average above .300 in each of the past three seasons. Wainwright finished second in the National League Cy Young voting last year and is a leading candidate for the award again this year. We’ll be pre-selling autograph tickets in about a week. We’re still finalizing details on pricing.

In addition to the players signing autographs, there will also be a soft-tip darts tournament and Wii home run derby with prizes and proceeds going to Operation Jack, 50/50 raffles, a silent auction, plus a donation table that will get patrons wristbands good for discounted food and drinks.

Most of you aren’t in the St. Louis area. But if you are, or if you’re like me and heading into town to run the Lewis & Clark Marathon in St. Louis suburb St. Charles, you should stop by because it’s going to be a great time. I have to say, I’m pretty grateful for the efforts of the players and the management at Hot Shots because this is really going to be huge for Operation Jack.

For details about the event, head to operationjack.org/cardinals.


Skip Schumaker

Adam Wainwright

Here’s A Cool Story From Tiff
I was running on the treadmill at the gym on Saturday when I was distracted by a text that came in on my phone. As I read the text, a huge smile came across my face and my pace got a little faster. It was from Cassie, Jack’s aide. She was telling me that Jack was in a good mood … until I walked out the front door and closed it behind me. Once I left, he got really upset. I quickly texted her saying I’d be home right away.

When I returned home and walked in the front door, Jack was there to greet me with a huge smile on his face. He grabbed my arm and led me upstairs to my room. As I stood there, he ran down the hallway to his room, grabbed his teddy bear and Curious George monkey, raced back down the hallway to my room, crawled into my bed and just stared at me, locking his eyes with mine. I said,”Hi Jack!” He said,”Hi Daddy.” For once, I looked past him calling me daddy. This was a special moment between us. As I leaned down to give him a kiss, he put his arm around my neck and wouldn’t let go. He also didn’t let go of the smile that was on his face from the minute I had walked through the door. He stared at me, his teddy bear and his monkey and just kept on smiling.

After about 15 minutes of laying there with him, we left my room and headed downstairs. For about 30 minutes, Jack followed me everywhere around the house. I found out from Cassie that the entire time I was gone, Jack was sad and cranky. She said that as soon as I came home, it was like day and night with his moods. For the first time, I felt like Jack actually noticed his mommy being gone. And for the first time, I felt like he really missed me. He’s come a lone way since the day the neurologist told Sam and I that if we were to leave a room for two days, he wouldn’t even notice!

Cool Video Of Jack
What can I say? He likes the Wizard of Oz right now … I guess he knows I went to college in Kansas?

OK, that’s all for today. I have a fun announcement for tomorrow. Have a great Wednesday, everybody!

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Guest Blog: Rallying The Troops

August 4, 2010 by operationjack 5 Comments

Today I have a guest post from Operation Jack supporter Roy Naim. Roy asked a few weeks ago if he could submit a guest blog and I have no problem with that. So, today I’m running what he wrote.

Real quick, just in case you’ve never been here, click here to see why I’m running 61 marathons this year to try to raise money and awareness for Train 4 Autism.

Now, here’s what Roy wrote (follow Roy on Twitter at @roynaim).
—————————————————–
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior.

Autism effects 1 in 150 children in the United States.

Autism has no cure that is known.

What does this all mean? Often I see different medical words and diagnoses and I wonder, does this really mean anything to me? Is it really just another one? Is it just something that we are sympathetic for and say “oh man”?

Often it is “something” we just throw money at and hope we don’t hear about it again. And if we do hear about it again or know someone who has “something”, at times we tend to separate ourselves and try not to know what is really going on. There are MANY who do their part to help those who they know are affected somehow by any illness. Sadly, however, there are those who try to run the other way.

Individually, I decided to change that. I no longer just wanted to just sympathize with these families. I wanted to see what they are going through. I wanted to see how it changes their lives. I wanted to see why people are afraid of getting involved and helping out. I wanted to help out and try to be closer to empathizing with them.

Me and a few close friends started to volunteer at the hospitals and get to know these families. We started becoming a member of the families. The kids knew us. The families invited us into their homes. We laughed. We cried. We took them out for dinner, often drawing funny looks from others. We learned about feeding tubes. We pushed wheelchairs. We gave shots. In a way, we became big brothers. We learned more about these kids and their diseases and at the same time our lives changed.

We saw parents staying up all night to tend to their child. We saw how this affected the other siblings at home and at school. We saw how people tend to give them the “pity look” when they were out with the family when they just wanted to be a normal family.

They don’t want pity. They don’t want sympathy. They just want normal. Something that they may never have and this is why many try to stay away from them. They don’t want to be associated with non-normal families.

However, this was our job. We tried to make everything seem normal. We tried to take these special kids and give them a normal time. We took them on roller coasters, we did arts and crafts activities and we just talked like friends typically do. We took their siblings out and gave them much-needed attention. We tried to make living with the illness normal as possible.

I will never forget this little girl, a daughter of the medical director at the time, as she played with her little doll and stuck a G-Tube in it. Her father did such a great job in not discriminating against those with disabilities that his own kid felt it was normal. The kids and the families don’t want to be discriminated. They want to feel like they’re part of society.

Though many are volunteering across the country to help out in these situation, some want to do something more.

I was once 360lbs. A full circle. And to be honest about it, though I always acted like it fun to be fat (I got to sit in the front of the car every single time), I knew something had to change. This is when a mother of one of these children came over to me and talked to me about participating in a marathon to raise money for the organization that had helped them throughout the years. I started laughing at them. Why don’t I just give you the money? Why run for it? What is the point? Well, long story short, I ran for it.

And then I understood. There is something special when someone marches or runs for a cause. When someone parades through town screaming the “Red coats are coming” it rallies up the troops. It is not just about the money. It is about the cause. The awareness. It is about making people realize there is something out there. It is to show people that Autism is not just another word but rather something very real.

What Sam is doing here, though quite challenging and extraordinary, is something that has been done throughout history. Not the running part but the rallying. Whether it was to rally to fight the red coats, whether it was to blow the vuvuzela (I am suffering from post world cup withdrawal) to rally up the troops in African countries and scare their opponents away … the run is a battle cry. The run is a form of rallying. And this run is to rally for Autism.

Though Tiffany a few weeks ago what is it like to have a child who is autistic, we will never truly understand. So I ask of you, what are you going to do for it? Will you let autism be another word for you? Will you just throw money at it? Or will you stand up and rally for it? Take your time to learn more about it and maybe even volunteer somewhere for it. Doesn’t have to be autism per se, anything will do. It will open you eyes. It will open your heart.

So, let’s look up the word Autism. Is it just a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior OR will it mean something more? Will it be something you are rallying for?

And the next time you see someone running for a cause, it is not just about the fundraising, they are rallying up the troops.

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Nothing Beats A Good Kick In The Butt

August 2, 2010 by operationjack 4 Comments

I struggled with a rough race on Saturday, but I got a nice attitude adjustment yesterday when I desperately needed it. Normally on Mondays, I write a weekend recap filled with bad jokes. But today, I want to address some things I put in my race recap from this weekend. There were some things I want to cover from this weekend, so I’ll definitely write about that tomorrow.

In my race recap from this weekend, I complained about my time and the way I’m running. I’m struggling physically and even more than that, I’m struggling mentally.

In all of this Operation Jack stuff, I really have no clue what I’m doing with all of this. I just move forward on a daily basis, living somewhat in a vacuum. I came up with this idea of running all these marathons, but I’m not sure what to do with it. I don’t know the exact expression — something like the whole is greater than the sum of all parts — but I know the 61 is more important than any individual race. I’m competitive with myself and I dwell on my race times, and that continued again this weekend.

Now, I know it’s important to go out and give it my all every time. I owe that. But the results will be what they will be and as long as I give it my best, then I’m doing the best I can. I was pretty bitter after Saturday’s run, though, and that came through in my race report.

A good friend of mine called me up yesterday morning and chatted with me for a while after he read what I wrote. He wasn’t trying to give me a pep talk, because that’s not what I need. He was trying to help me get some perspective. He told me that some of the favorite race reports of mine he’s read are the ones where I’m an official pacer. In those, I’m helping other people achieve their goals and I’m having a completely positive experience.

He reminded me to keep my focus where it needs to be. When I started this, I knew the point of this is to help Train 4 Autism grow. It’s not about my running, because nobody really cares if my legs got sore at mile 18. Plus, while I run fairly well, I’m nowhere near spectacular or truly fast and I never will be. I took a chance that by doing something that most people would think is crazy, I could at least get them to listen to my message.

As you all know, is that I hate how my 6 1/2-year-old son Jack is severely autistic and struggles with that and I want to make a difference in his honor. I want to make things better for people. I don’t know exactly what or how, but I want to make things better. Ideally, I could somehow help tons and tons of people. Even if I just help one or two, that’s still one or two lives I made better. I know I say this all the time, but I need to remember that my goal this year is building up a charity, not lowering down my marathon times.

So that call from him came at a great time. I really needed a pick-me-up and I got it. Then, about an hour after I talked to him, I got a comment on my race report from somebody I met through him. She wrote, in part,

… I wasn’t going to share this with you ever, but today seems appropriate for it. I was a long time smoker, I mean nobody did it better than me … Seriously, I could have made a career out of it. I had tried countless times to stop, but always “gave up”. The last time I quit was after reading something you wrote. Honestly I have no idea what it was, but I remember thinking how far you had come from when we couldn’t even walk up the stairs to [our friends’] place on moving day. I thought if he can do it, I can too. I kept your picture (the black and white of you looking over your shoulder running) as my desktop wallpaper for months and looked at it every time I wanted to give up.I am still smoke free, eat healthy and am back to my daily exercise ways. So Mr. Ordinary,you may have saved my life, stop your bitching 😉

I met her years ago, and she’s very good friends with my friend and his wife, but I only started communicating with her a month ago or so. So she’s been following along with Operation Jack and using me as inspiration for a while now and I had no idea. When I realized that, it was pretty clear to me. It’s not about what Operation Jack is doing for me. It’s about what Operation Jack is doing for others. It feels a whole lot better to read something like that than it does to run a 3:10.

When I wake up in the morning, the first thing I do is check my messages (email, text, Twitter) to see what communications came my direction while I was sleeping. This morning, the first thing I saw on Twitter, which was actually just a general message to everybody from somebody I communicate with, was “If I change just one life for the better, I’ve done my job.”

So, I get the picture. I’m doing my job, imperfectly like any human would. It was nice to get that kick in the butt yesterday and that reminder this morning. I’m where I’m supposed to be. I just need to do what I’m supposed to do.

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Life Happens When You're Busy Making Plans

July 26, 2010 by operationjack 4 Comments

Life is what happens when you’re busy making plans. I’ve heard that before and it was the case once again this weekend.

Real quick, just in case this is your first time here, I’m a father of three and a marathon runner. My middle child, 6 1/2-year-old Jack, is severely autistic. To try to make a difference in the autism world, I’m trying to run 61 marathons this year to raise money and awareness for a charity called Train 4 Autism. So far, so good, I guess. I’m raising money, reaching people, and I’m through 35 of the 61 marathons.

I’m used to life not going according to plan. Tiffany and I met when she was 18 and I was 19. We got married the spring after I graduated from college, bought our first home less than a year later and she gave birth to our first child two years and a month after we tied the knot. According to plan, we followed up with our second and third child and they were each a little more than two years apart. Three kids, two boys and a girl, 51 months between the oldest and youngest.

Perfect! Well, except while we were busy with our plan, Jack’s autism prevented him from bridging the gap between Benjamin and Ava. Life happens, huh? I think back to when Tiff and I were teenagers, living at home and dating. We had no idea life would be this way. Even in the first couple of years of our marriage, when we were saving money, moving into a bigger home, having kids and buying puppies, we would have never guessed things would have turned out like this.

Anyways, I guess our detour this weekend is extremely minor in comparison to the rest of everything going on in our world, but just because the impact on us is comparatively minor doesn’t mean I can’t be bummed about it. This was supposed to be our weekend, the weekend of the year. Not according to the plan, though, one of the big highlights was laughing about a $4.99 wiffle ball bat, but I guess that’s life.

We’d been looking forward to this weekend since I mapped out my Operation Jack schedule more than a year ago. The San Francisco Marathon! We made plans for her to come along, we extended it a half-day on the front end and back end, and this was going to be our big vacation of the year. Sure, we were only going to be gone for 36 hours, but that was a big deal for us. We got a killer deal at a Courtyard by Marriott ($39!) and we were going to have lunch at Fisherman’s Wharf. I texted her all week, joking, “Let’s run away to San Francisco this weekend!”

Everything changed on Friday night, though. Our child care options are extremely limited because of Jack — a combination of of the challenges of taking care of our “Wild Bunch” and the fact that we don’t trust hardly anybody to stay with the kids overnight. Tiff’s parents were watching the kids for the first part of the weekend and then my parents were taking over. Her parents were flying out to New York for a trip they had been looking forward to for a while.

However, her grandmother, whose health has been declining for a little while, took a turn for the worse on Friday. Her parents cancelled their trip to New York and were fairly distraught. It was a no-brainer for Tiff to cancel her trip, too. First of all, we couldn’t possibly have them babysit when they needed to be at the hospital. And there’s no way we could have possibly enjoyed any kind of vacation together with everything that was going on.

I was staring down the barrel of an extended stay in San Francisco, but I was able to switch my flights. Instead of leaving at 9 a.m. Saturday and returning at 9 p.m. Sunday night, I was able to leave at 12:35 p.m. Saturday and get back at 3:15 Sunday. The fun trip turned into another business-as-usual trip. Our lunch date at Fisherman’s Wharf Sunday turned into a breakfast date at Denny’s on Saturday.

We had nice time chatting at breakfast and I enjoyed my all-you-can-eat pancakes (seven!) and five cups of coffee. On the way out, we spotted the coloring pages they have for kids and grabbed one for Ava. We stopped off at the grocery store on the way home and picked up, amongst other things, rice cakes for Jack and a $4.99 wiffle ball kit for Benjamin.

I opened the car door for Tiff at the grocery store. I always hold the door for her going in and out of buildings, but I don’t typically get her car door — there’s always too much chaos with the kids. However, when we’re out on date night, I always get the door to the car for her and she smiles. So anyways, while I got the door for her at the grocery store and gave her the wiffle ball bat, I joked with her, “Hey Benjamin, we brought you a souvenir from our trip!” We both laughed over the irony of what the weekend had become, and really, how different our life is turning out from what we had planned. She responded that we brought home the coloring-book page for Ava and the rice cakes for Jack.

We have a roof over our heads and three children, so we have everything we need and we know that. But things certainly aren’t what we had expected. This weekend was another reminder that we have a whole lot less control than we think we do.

As for her grandmother, it’s still status quo. It would be great for her to somehow come out of this and make it to the Easter dinner she loves so much, but that doesn’t seem likely. Our vanishing vacation is certainly meaningless in comparison, but it’s still a component of our world that was kind of a bummer. I got to meet some people I had never met before up in San Francisco, but aside from that, I really didn’t want to be up there. I just went through the motions and looked forward to coming home.

On the bright side, though, since I got home early, I had time to go to the park with the kids yesterday afternoon. I spent a while pitching and hitting with Benjamin and his new wiffle ball set, then played with Ava and watched as Ben ran around playing with other kids with the bat and the ball.

So, not exactly as planned, but I was where I was supposed to be and I guess I shouldn’t complain, because it wasn’t a bad place.

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