Friday, December 31, 2010

The End: The Beginning

Didn't we just do this? Wasn't New Year's last month?

I've thought so much about what I wrote last year, it still seems fresh in my mind. A year ago, huh? Doesn't seem possible.

Do you look back on the previous year and fill out a mental scorecard, tally up the results and draw a conclusion? Do you let the most impactful events of the year determine the score? Or do you judge a year based on vague impressions about what you think happened, ignoring those things (good or bad) that don't fit into that preconception?

When I was younger, I defaulted to "yeah, last year sucked." Now I default to, "it was a pretty good year." Most of the things I used to judge the years of my youth matter little now. The things I use to judge the years now were unimaginable in my youth. In both cases, I've tended to ignore the things that didn't fit into my preconceptions.

Like with most history, most snap judgments prove to be erroneous. These judgments are made too soon after the history was made. There isn't enough time to fully digest what's happened and/or how they will shape the future. The emotions surrounding the events are too strong or we conveniently forget the less pleasant things. I'm pretty good at the latter.

This year, I completed my goal of reading at least one biography of every president. It was an enlightening experience. Historians are a lot like we are. They make their judgments either on incomplete data or by focusing on the things that fit their preconceptions.

I found that my preconceptions about most presidents ignored plenty of things. The great presidents had their faults. The worst had their strengths. I no longer accept the greatness of some - Jefferson, Jackson and Wilson - without reservation. I no longer ignore the lessor known - Polk, McKinley, and Coolidge - now that I understand the contributions they've made. Like years, there are those who were great (Lincoln, FDR and Washington) and those who were lousy (A. Johnson, Pierce and Buchanan) but the great had their faults and the lousy ones had strengths.

Similarly, the years in my life I've judged to be great weren't without challenges and setbacks and the years in my life I've judge to have sucked weren't without blessings and accomplishments. Sometimes the things that sucked look like blessings when seen through a longer lens of time.

This is a blog about dealing with my son's autism. Something I can judge as a setback or a blessing. At first, it was a debilitating setback. But it was always a blessing because Robbie's a blessing, no matter how hard things have been. I don't need a longer lens to see that now, but I did at first. My lack of blogging about the topic is an indication of how well things have gone. I haven't been inspired to share the "normal", everyday of it all because, well, it's been normal. I'm going to judge that as a very good part of the year.

There is one area I filled out a scorecard and tallied up the results.

Around the end of March, I finally found the strength to attack my weight problem. Nine months and fifty-five pounds later, I'm pretty happy with the results.

Based on this alone, I'm prepared to judge 2010 as a great year - ignoring the blessings and setbacks that occurred along the way.

I'm not going to make any predictions or resolutions for 2011, though I'm hoping there's a book deal in my near future. All I can do is set goals and pursue them to the best of my ability. Twelve months from now, I'll determine whether or not a great or bad year was had. I may or may not be accurate about that.

Time will tell.

Happy New Year, everyone.

Sunday, December 26, 2010

The Holidays: Things Change

This holiday season, I thought a lot about what I'd written in the memoir Kicking and Screaming regarding Christmas, and how much had changed since I wrote it. It's as if someone else wrote that story. Rather than retell those feelings, I thought I'd include an excerpt.

It begins in the middle of the discussion about our concerns about Robbie's behavior and focuses on that behavior around Christmastime. I've included pictures of Robbie from this Christmas to demonstrate the wonderful contrast. If you're reading this on Facebook or via another device, click here to see the photos:

Since my head was literally and figuratively thousands of miles away during Robbie's early years, I didn’t internalize the concerns Joy was expressing about his development – or in some areas, lack thereof. I focused on those areas where he was excelling and they provided me great comfort.

One of those areas I focused on was his intelligence – he was smart. But there were some behaviors, including gut wrenching moments, I was unable to overlook.

Joy loves Christmas. She and Santa Claus conspire to give our kids almost everything they would like, within reason.

Kelly greets every Christmas with this same enthusiasm, an enthusiasm so strong she can’t contain herself. During the weeks leading up to Christmas, she exercises her powers for snooping.

On more than one occasion (read: many) she’s stumbled onto a few presents (which pisses Joy off). But I’m not in any position to throw rocks – I used to snoop for presents as a kid. The night before, she can’t sleep a wink because all she can do is think about presents. Christmas morning Kelly would wake up at the crack of dawn doing everything she could to speed up the process.

Unlike his mother, his big sister and even his tired and grouchy father, Robbie just didn’t care. He didn’t stay up late on Christmas Eve. He didn’t wake up early on Christmas day. He didn’t like the day. It was difficult to get him to leave his room, come down stairs and open any of his presents. Joy pushed package after package in front of him and encouraged him to open it, only to be ignored.

“Look, Robbie! Look what Santa brought you!” she’d implore.

Eventually she would open a package for him and try to get his interest, but that failed, too. Kelly tried to encourage him to open a present. Sometimes, she’d open it for him. When Joy did get him to open a present, he was unaffected by it. He was ambivalent regardless what was discovered under the wrapping. He was bored by the whole thing. He showed no interest in any of the toys.

He might look at one of them for a moment or briefly play with one of them (after Joy had taken it out of the box and set it up in front of him and done everything in her power to interest him), but soon, he’d put it back on the floor. It wouldn't take long before he retreated back upstairs to his room, closed his door and wrote on his doodle board. It was horrible.

The two worst years were when he was three and four years old. The idea of child those ages possessing so little interest in toys was incongruent with anything we knew. In those days, the only things that interested him were his doodle board and the TiVo remote control.

This lack of interest in “things” may sound good from an adult altruistic, anti-materialism perspective, but for a child it was just flat wrong. Kids like toys – the more toys the better. I remember being sad about this, but I tried not to let it trouble me too much. I lied to myself and assumed this was just his way.

Robbie’s Christmas behavior crushed Joy. For the woman who loved the holiday more than any other, it wasn't fair. She was heartbroken. It reduced her to tears. A child not being interested in Christmas or toys is a big neon sign saying there’s trouble.

I may have missed it, but she didn't.

Christmas 2010:

As the pictures show, this Christmas was different.

Very different.

Unimaginable only four or five years ago.

I must confess that the pictures are misleading. Those depicting Robbie decorating the tree and wrapping presents that he bought were real. The one of him opening present on the right was not.

That picture was a staged reenactment. What really happened is that Robbie barely slept the night before Christmas. Too excited to sleep for long, he woke up his conspiratorial sister, went downstairs, opened all of their presents and began playing with them. By the time Joy and I awoke at 4AM (due to the clatter), it was all over.

Less enthused about the moment at the time than I am now, the children were required to re-wrap their presents and go back to bed. Christmas take-two was postponed until 10AM.

And it was still wonderful.

Saturday, June 19, 2010

The US Open: Leaderboard

As of 11:27 AM CDT, Ernie Els is tied for second at the US Open in Pebble Beach, just two shots off of the lead. While most of the US coverage is focused on Phil Mickelson, I'll stick with Els.

Back in 2008, after failing to win a PGA Tour event in 2005, 2006 and 2007, Els won the Honda Classic. Five days later, Els held a press conference and said, "I have a son with autism - his name is Ben."

I get that.

In a game dominated by mental toughness as much as physical ability, it's no surprise that Els struggled from 2005-2007. His mind was getting its ass kicked on a regular basis. Here's how he described it to Parade Magazine:

"I was feeling sorry for myself. You're a man, you have your boy: You want to play football, soccer, and golf with him. Out on the Tour, you miss a couple of putts, and you don't play well. That's an emotional roller coaster, regardless of what's going on in your personal life. Then, all of the sudden, you connect the two--my God, my son has autism--and you really feel a bit depressed."

No celebrity story about autism resonates with me more than Els's. It isn't the fact that his son, Ben, is Robbie's age. It isn't the fact that his daughter, Samantha, is Kelly's age. It isn't the fact we're both outstanding golfers. It isn't even the fact that our personal trajectories' with autism almost occurred at the exact same time. It's how he and others describe his experience. The similarities are just hard for me to miss.

Els tried to keep Ben's condition private. He tried to deal with it on his own for a long time. That doesn't work. It's a lesson most of us had to learn the hard way. For Els, it took strokes off his game. For me, it put pounds on my waist. He kept an outward appearance of calmness and hid the fact from the people closest to him, including Chubby Chandler, his manager. As CBS Sports reports:

On the surface, Els always looks calm. When he was winning 15 times between 1994-2004, he looked calm. When he was winning just once from 2005-09, he looked calm. Even his manager and close friend, Chandler, didn't know.

I get that.

"At the time, I couldn't see what he was going through," Chandler said. "I couldn't see the bad side. But now that it's good, I see the good side. I see how relaxed he is. He's serene." It starts with a first step.

I have a son with autism.

The hardest words I've ever said. And they're still hard. But once you finally say them - and mean them- the damn breaks. The water rushes out in a fury. Eventually it empties and you start to get your life back. Your game. Your sanity. Your waist. Now, off to the gym.

(Thanks to Mike S. for the Parade link)

Tuesday, June 15, 2010

The Hiatus: What Gives?

It's been over two months since I last posted. Seems hard to believe to me. Did I take a two-month vacation from autism? No. Unfortunately, it doesn't work that way. Did I spend the last two months enjoying autism? In a way, yes.

Robbie's school year ended a week and a half ago. The lead up towards the end included a few bumpy days but nothing what we experienced last year. It's hard to believe the year's over and just how far we've all come.

But the last day of school was the icing on the cake. That day we learned that Robbie had been awarded a "Junior Self-Manager" award. It is given to children at his school that demonstrate the ability to manage their behavior appropriately during the school day. This isn't something for the special education students. It's for all of them. For Robbie to have achieve this represents a dramatic improvement in behavior management.

Progress is a lot like knowledge. The more you acquire, the more you realize is out there. This is no different for Robbie. The incredible progress had made over the last school year has helped me realize that there are other areas - areas I'd written off - that we should explore. A key goal, one I've been hoping for him to pursue, is to improve his social skills. Because of what he's achieved this year, he will be participating in a small social skills group next year at school. We will also be working with him to establish friendships over the summer to get him interacting with more kids.

One type of goal I hadn't considered is improving his physical activity. While he will resume his occupational therapy over the summer, I don't see that as the same thing. I'd never been able to interest Robbie in any kind of physical activity, whether its sports or simply playing catch. But then Rodney Peete's book, Not My Boy, gave me an idea. Rodney devised a simple plan to engage his son, RJ, to play with him. He didn't ask his son an open ended question like, "Do you want to play catch?" He made a specific statement: "We're going to go outside. I'm going to throw the ball to you ten times and you're going to throw it back to me ten times. Okay?" Voila! He played catch with his son.

When I presented this to Robbie in the exact same manner, I experienced the same results. Thanks to Rodney Peete, I played catch with my son for the first time. It's not easy to keep him interested or getting him to keep doing it. But he's done it and now I know it can be done. Knowing how debilitating PE is for him at school (and that it will only grow worse over time), it's critical he improve his physical skills. The difference now is that I think it's possible.

So yeah, I've been enjoying autism for a while. It hasn't gone away and probably never will. But I'm going relish those few moments we get when things finally go our way.

Saturday, April 10, 2010

The Song: Living With it Every Day

An excerpt from the memoir Kicking and Screaming:

The trip to Autism World is a one-way journey. It’s one thing to accept the diagnosis; it’s another to accept the permanence of our new life. We’re not tourists. Our trip to “Holland” (or Mars, for that matter) wasn’t a vacation. It was a relocation. We’ve unwittingly become residents of this strange new world – a world where nothing is straight forward.

We’ve learned this is a life of trial and error. It’s hard to get into specifics about what to do in the future because we remain challenged about what to do now. Every child is different, and what worked yesterday might not work today or tomorrow. We’re learning every day. Each day is either a triumph or a setback or a mixture of both. We’re making progress. However, I’ve got to be careful not to enjoy successes in some areas at the risk of ignoring important needs for improvement in others.

Even two years later, those opening paragraphs from the chapter titled Living With it Every Day ring true. I've treated Autism World as the new place we live as a result of this diagnosis. We have had to learn to adapt to what it's like living in this place as if we've physically moved to live in a different country. A different language. Different customs. Different rules. It's all there.

After writing the chapter, I tried to sum up my feelings in a song by the same name. The song is a vague reference to my experience with autism - so vague that Joy didn't catch it at first. I wrote it slightly in the vein of Harry Chapin's Cat's in the Cradle, whereas I tried to make each verse reflect a chronological step forward in life. But there are a few lines that specifically reflect how I've felt about this.

Both the lines old thoughts that couldn't be and I can't read the lines of my life refer to the same aspect of receiving an autism diagnosis: the dashed or challenged dreams.

I had no idea until the moment we received the diagnosis just how much of our kids' lives we script in our mind. We imagine them going to school, graduating, getting a job, falling in love, getting married, having children, etc., etc. We create these imagines with amazing depth and texture. The autism diagnosis erases all of them. That doesn't mean that those things won't happen. But to have all of them put in doubt is a very painful loss.

I can't embed the mp3 player without blasting your computer with music, so here's the link to my old MySpace page It's the fourth song down.

Thursday, April 1, 2010

The Month: Autism Awareness Month

It's April. Time again for Autism Awareness month. It's also time for a new book about autism.

It used to be, when I thought of former USC quarterback, Rodney Peete, I thought of him as he's shown in this clip - getting leveled by Notre Dame's Frank Stams.

(Here's the link if you're reading this in a note on Facebook).

I wonder if Rodney had a Frank Stams Awareness Month after that? Ah, yes. The glory days of Notre Dame Football. So long ago.

Now, Rodney and I - along with many, many fathers both known and unknown - are members of the same team. The team of autism fathers.

This Saturday, Rodney's new memoir Not My Boy! will be released. What a great title. You can imagine a father saying those words in defiance, in a fit of denial, or while pleading to God with tears streaming down his face.

Or all three.

Having read the prologue and the first chapter on Amazon, I can say without hesitation that I'm excited to read this book. It appears he has taken a head-on approach - warts and all - in discussing his experiences with his son RJ's autism.

It's been a while since I've read an autism memoir. I had read too many as I was writing my own and after a while I found it too overwhelming. It was just too much. I needed a break from it. I recently read a chapter from my own and found it to be a bizarre experience. It was as if I was reading someone else's story. I'd written when my wounds were fresh, much fresher than they are now. I was angry, angrier than I am now. And I was still in denial, much more than I am now. Writing that story helped me transcend all of three to get me to where I am now. All of us need something to get us across that chasm of anger, fear and denial. I chose to write a memoir to do it. So did Rodney Peete.

According to Publishers Weekly, Not My Boy! Rodney recollects his "golden memories of a supportive father's role in his successful life, he imagines a similar time with his son, R.J., but everything changes for the worse when R.J. is diagnosed with autism at age three. His marriage almost collapses under the weight of the diagnosis while his valiant wife, Holly Robinson Peete, emerges as the child's advocate amid Rodney's overwhelming anger and denial, ultimately triumphant in getting R.J. the proper attention. This invaluable parental primer on guiding an autistic child through the medical and therapeutic maze along with strengthening a besieged marriage will give renewed hope to all those in the same situation."

In other words, RJ's diagnosis was a lot like Frank Stams. Rodney never saw it coming and then it knocked him flat on his ass. Then it jumped on top of him and pinned him into the ground. But eventually, he got back up. It just took a helluva lot longer and was a helluva a lot harder than it was to get back off the Coliseum turf in 1988.

Go watch that clip again. That's what it was like as a father hearing that diagnosis.

But we got up.

Way to go, Rodney. This time, I'm cheering for you. Except on November 27th. Then, for a day, we'll be rivals again. On November 28th, I'll be back in your corner.

Here's the link to buy the book on Amazon. (click here)

Here's the link to the Autism Society of America's page about Autism Month. (click here)

Saturday, March 27, 2010

The Family Thing - By Chantal Sicile-Kira

Even since Chantal Sicile-Kira found me on Facebook (for which I'm thrilled) I've had the opportunity to read many of the important things she's written about autism. Her latest blog entry on Psychology Today is one of her best.

In her post, Chantal touches upon some of the less obvious areas where autism affects a family, especially the grief (that many experience but few know how to express), the misplaced anger (oops, sorry about that), and the impact on siblings. Even something as simple as finding a baby sitter - something we struggled with - appears to be a minor issue but can become a major contributor to stress.

Chantal has a new book out called 41 Things to Know about Autism, which I'm looking forward to reading. According to Temple Grandin, it's "a wonderful first introduction to autism for parents, teachers, relatives, and neighbors of a child on the autism spectrum".