My Autistic Boy And Other Adventures In Fatherhood

Some of your emails bounced back.  So I’m posting our Autism Walk thank you here also.

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As is often the case with non-profits, they aren’t the most technologically savvy organizations. That said, we just got the total list of donations for the autism walk, so this is the big thank you/group hug email.

In 2008 we raised over $4500.00.  As they during NPR pledge drives, this was in large part due to you on this email. 

In all seriousness let me get a bit sappy here -

Demetrius was diagnosed as autistic in 2003. As many of you who regularly read the blog,  you know how this condition impacts our lives.  You’ve been on the end of tough discussions on the phone, you’ve left me alone and allowed me to close my door and work quietly in the office, and you’ve inspired me to keep going, keep smiling, keep my head up on the toughest of days.

Lets be real also, its taken a few years off of both of our lives as we have had years of working with a little boy who simply didn’t respond to questions, had language that was all but unintelligible (when he did try to communicate) and couldn’t complete many of the simplest of tasks.

Today, well, today Demetrius is a mainstreamed first grader; going on to second grade; who sings to himself Alice Cooper’s ‘School’s out for the summer’ as we get closer to the end of the school year; who ate yesterday at the Iron Movie with his friend Christopher: two buckets of popcorn, a sour gummy worms, beef jerky and washed it down with a lemonade.  He attempts to play soccer (he gives it a try, it’s all we can ask), he puts caterpillars in his sister’s purse and he spends a lot of time trying to figure out the pass code to the parental controls on the TV.

What I’m getting at is that in so many ways, he’s emerged from his shell and is very much a regular little boy, and we couldn’t be prouder of what he’s become. 

But he does have a long way to go, and will always have it tougher than we do just getting through the trials and travails of every day life.

The dollars you donate don’t directly go to helping Super D, today.  Maybe some day a ‘cure’ or a better methodological approach will be developed to help these kids, and adults, live in our world more, and less in their own. That’s why we harass you for money, that’s why we drive to midtown at 6:45am on a Saturday morning to walk (or try to walk, as it were the case this year). Yes, Autism right now is cause celeb, but having gone through the heart wrenching pain, let me tell you it is very real, and very hard.  And lots of families, and children have it worse than we do, and this money goes to help them, their families, their therapists, their doctors and medical researchers.

But it isn’t about just the money, it is the fact that each of you were willing to vest a bit of yourselves in the cause of this little boy, that makes our days a little brighter, our smiles a little wider and our hearts a little warmer.  So think of your gift as doubled then, the money and the hope that it brought to the Grassos.

Again, we thank you for everything,

Jerry & Kim
 

Well, there is always a risk in doing an event in April, and that risk is rain…and we got it in buckets this morning.  So, we trekked all the way from our suburb of Alpharetta down to Midtown Atlanta, only to get dumped on.  Now, Demetrius has a ‘rain thing’ and the temperature was dropping, so we decided we had enjoyed half-an-hour of festivities and jumped in the mini-van when the rain wasn’t obviously letting up.  Some folks walked, others headed for their vehicles too.  Here’s a few photos from the event:

The local NBC affiliate did interviews from the event, talking to families and teams all over the place…

View of the festivities looking at the concert stage…

Define a successful event: A bubble guy and autistic kids. I heard the squeals of happiness and headed over to hear what the noise was all about. See above. This pictures doesn’t do this dude justice because behind the girl on the left there are 15-20 auties chasing the bubble he did before this one.  Talk about flapping!

Those with other disabilities came out for the cause.  Inspiring!

Then the rain came, and those with slickers powered through, those without went for cover….

The Grassos/Autism Walk 08


Team Super D, 2008: Back Row/Tonja Philson, Kim, Laura Gossage, Jerry; Front Row/Maya, Harrison Gossage, Demetrius

Well, tomorrow, here in ATL, we have our autism walk. I want to say thank you so much to everyone who gave us a bit of cash (or more than a bit) for Team Super D. Well, we raised just over $3000.00 this year, and that’s just awesome.

We all have causes in our lives that are important. I try to give my fair share of $20 donations to other causes, but this is the one that affects my life in every single way, every shape, every form…and is in the back of all of my thoughts, every waking moment.

Thank you, and pictures and postings about the walk coming tomorrow.

Hello Readers:

It’s that time of year again, and Team Demetrius is raising money for Autism Research.  Last year, with help from many of you, we were able to raise approximately $3500, which was totally awesome!  

We are looking for you help again this year – don’t feel you ‘have to’ give, but we wanted to make everyone aware that we are raising money again at this time.

Please click the hyperlink below if you are interested.  And if  you want to get out and walk with us, that would be totally awesome too! Just let us know -

Cheers,
Jerry & Kim

Hyperlink to our team page: click here.

As I mentioned earlier, this is a new feature I’d like to try out in one of my weekly postings. Let me know if you like or dislike. I’m not sold on it either way at this point.

Autism is now in the news cycle for this year’s presidential election. See here for a bit from the Republican front-runner, John McCain.

You know, this is one of those ‘duh’ moments. I’ve not seen a news story that tries to explain in laymans terms the difference between auties and aspies, but it seems there should have been one I would have seen previously. Here you go with at least this doctor’s attempt.

The Autism Society of America is hitting the road and heading up to Washington DC for a couple of days of lobbying. Find out more here.

Confused about vaccine discussions? About.com’s autism blog tackles it today. Click here.

Barnes & Noble and Autism Speaks are teaming up to do some storytime events at local stores in some markets across the country. Click here to see if there is one in an area by you.

Hmmm - worried about your autistic kid’s sibling(s)? Read this at Medical News Today. It is something to mull over.

Long time readers of this blog know that I’m a big fan of Izzy’s autistic/surfing project, Surfers Healing. They also know we were going to do this in North Carolina last year, but a hurricane got in the way of what I’m sure would have been a totally amazing experience for the Grassos (and Demetrius, in particular).

Autism Speaks is cool, and from a professional PR point-of-view, they have done a fantastic job of raising awareness of the disability and the cause. But Surfers Healing, from a personal point-of-view, is more in tune with me. Not that I’m a cool surfer dude at all, I’m not. But its a Dad, trying to find a way with his son, the autistic world they live in, and something the two of them can relate to together. That just rings true to me. Nature walks are a little bit like that for me and Demetrius I guess, but Izzy has turned it into something more than just the two of them - and for the vision to do that, I’m in awe.

So the program was profiled again, this time on NightLine, and I just had to hyperlink to the site.

Way to go Izzy, you rock. Thanks for the hyperlink, Nonni.

Sorry I didn’t post yesterday guys, I had a very busy day at work and it simply fell off the plate. I promise to make up with a post this weekend.

As most of you know, I’m a technology worker, so one of the magazines I read is Wired. Love it! I was perusing through the latest issue and saw this statement:

What we need are more Bill Gateses — people with Aspergian focus, with a direct sensual ability to understand what a million means. They’ve got to be able to envision every angel on the head of a pin. Because when it comes to stopping the mass tragedies of today’s world, we’re going to need every one of them.

I was a bit surprised to see that a spectrum disorder was being used as a positive descriptor. Well, frankly, I was just surprised to see it used in this way at all (though this blog posting would be utterly different if it were used in a negative way)!

Clearly, this is a sign of the autistic spectrum mainstreaming. I’m not a philosopher by any means, but to me, this shows that aspects of the disability can actually be seen in a positive way and that what we are all doing - through our blogs, walks and organizations like Autism Speaks - is making an impact.

Even a small one in a columnist’s monthly piece!

You guys might want to start dropping that ‘Aspergian Focus’ into your cocktail party conversations.

The whole article can be read here.

I’ve been blogging…banging out on the keyboard….wasting time (maybe, depends on the day/time)….talking about my son, autism and how it affects our lives (though, by far, everyone’s favorite posting of all time seems to be my Jerry/Viggo comparison…go figure).  However, I really, really stopped in my tracks this morning when Kim sent me this Web page from Autism Speaks’ Web site.

I think this Dad caught almost the whole-kit-and-kaboodle on one page. Really good stuff.

Bet he’s never been mistaken for Brad Pitt by a drunken woman on the street though!

This morning I got up at 4am and Buddy and I went for a 5.5 mile run. Usually on Saturdays we get to sleep in until about 5:30am and then get up for running club, but this morning was special.

Kim’s friend Janet showed up at about 7:30 am and we went down to Atlantic Station for the walk. We were all wearing our Team Super D tee shirts. As we got down to the exit from the highway, we couldn’t get off at the exit. Too many cars, mini vans, SUVs idiling to get off for an Autism Walk. Wasting fossil fuels for a good cause.

We had to drive to my office, about a mile away, and walk – to a walk! Kim, Jerry and the kids will sleep well tonight, I am sure. (However, they have wells of energy I do not. They are on their way to swim at this time, while I lounge and blog.)

I was not prepared when we turned into the area where the walk began for what I saw – thousands of people, all in different ‘teams’ tee-shirts, walking. Since we were a tad late (walk from the office) we had to hustle at the back and see all of these people in front of us walking. Many had autistic children, like us, they were walking for…themselves; many orbited those children, whether extended family members (my parents and sister and brother-in-law were walking in Texas) or through professional relationships (therapists, doctors, etc…); many were walking because their company sponsored it (legions of people from UPS were walking) – many because autism has become somewhat a ‘cause celeb’. But they all walked.

Early in the walk we finally found our friends the Carraghers. They walked with us. This felt right to me on so many levels. I think I’ve said before that Demetrius and Joseph Jr. have known each other probably as long as the two of them can remember. Joseph has grown into a seven-year-old boy, with a seven-year-old friend, that is different from him and all the other little boys he knows. Demetrius has played at his house, has played with his toys, has watched his videos, and has periodically, when he is having a good day, played with him (more recently wrestled with him). Joseph knows him only this way, and Joseph walked with Demetrius, at times holding his hand – while Demetrius squirmed due to the noise and discomfort from all the people. But Joseph held his hand.

We chatted as we walked as a small team.

“Excuse me, are you Jerry?”

Me: Yes?

“I’m Christopher’s Dad.”

If you are a reader of this blog, Christopher’s Dad is a recent commenter. They knew me through the tee-shirt we were wearing saying, ‘Team Super D.’ We shook hands. I wished I had a business card on me to share email addresses, and now was not the time to stop walking. Christoper’s Dad: please provide me contact info, when you read this, in the comments section. As soon as I see it, I will take it down and I will then take it off the blog.

Here is a photo of Christoper, and his beautiful family:

Christopher’s Family

The walk ended and the kids wanted to play on some of the bounce houses they had there..too many people. So we went to get our tee shirts and leave.

That was it.

What is my take away? All of these people represent a consciousness that there is something in ‘this autism epidemic’ that affects all us – whether directly like us, indirectly like the Carraghers, or collaterally like the person next to me…that may have to bear the burden of his or her taxes caring for the welfare of an autistic child in the future. This is ‘the start’, and the energy is very high, as we put effort into making autism part of our collective medical consciousness and lobby for govt funding.

What will these walks be like in ten years? Will there even be walks in ten years? I don’t know. But I think the people at Autism Speaks have done a wonderful job here at the ‘start’. I don’t think, personally, that here in Atlanta we could have asked for more.

I thank all of you that took time out of your day to walk with us this morning. You lent your energy to raise awareness for the cause. I thank all of you that took dollars out of your checkbooks to donate through Team Super D to raise money for research — to build the infrastructure in people and places to conduct the research.

This was a good day for all of us that were affected by this. It showed me that we aren’t alone, that we are part of something larger, and hopefully, part of something that is growing stronger.

This was a good day.

Autism Speaks created a music video of the Five for Fighting song, “World”, which features images of children with Autism and their families. The band is generously donating $0.49 to Autism Speaks for each time the video is viewed and the funding goes toward research studies to help find a cure. When you have a moment, please watch the video and pass it along to your friends and family (or post on your blog!).