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.

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: brian.tracey.blogspot.com.

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.

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)

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.

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 www.myspace.com/btraceymusic. It's the fourth song down.

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)

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".

The ARD - Morale Was Good

According to Webster's, the definition of 'morale' is:

2a: the mental and emotional condition (as of enthusiasm, confidence, or loyalty) of an individual or group with regard to the function or tasks at hand. b: a sense of common purpose with respect to a group: Esprit de corps.

The Reevaluation - Part Deux

I didn't imagine the previous post to be a multi-part post but I should have.

As we inch closer to Friday's ARD (admission, review and dismissal - no, I don't why they've chose those words - I prefer using the words "A Real Downer") the weight of it feels much heavier. I don't expect to be surprised - especially since I just read the report - but I wasn't looking forward to be reminded. Maybe that's a lingering component of denial that just won't go away. Or maybe it's a result of being so close to the situation that you fail to allow yourself a properly objective view.

Or maybe it's normal not to want to read a nineteen page document about your child that's not glowing in every respect.

I don't recall getting a report prior to the evaluation in March 2007. I'm pretty sure they wanted to present us with the news live. It doesn't matter. I didn't read the report from March 2007 - ever. I couldn't bring myself to do it. I've already read this evaluation's report, so it's safe to conclude that both Robbie and I have made progress.

Robbie's progress is documented. I know because I just read about it. Maybe mine is too, I suppose, when you compare where I was three years ago (here's excerpt from the introduction of the memoir, Kicking and Screaming: A Father's Reluctant Journey into the World of Autism:

Robbie's screams echoed off the preschool's evaluation room walls, as he tried to escape the grasp of the special education assistant.

In a way, I envied Robbie. Overwhelmed, angry and scared, Robbie could kick and scream to his heart's content. It was a perfectly logical, if unpleasant way to express his feelings and no one could blame him under the circumstances. But the situation overwhelmed, angered and scared me, too. There were countless times I wanted to drop to the floor and throw a tantrum like that, but as an adult, I needed to be more subtle with my kicking and screaming. Ignorance, denial, and inaction were my weapons of choice and I employed them all with skill. The tantrum I threw in my mind that day was far more impressive than the one Robbie had thrown on the playroom floor. It's too bad nobody recognized it for what it was.

Most of the memoir was written in 2008, when the wounds from the diagnosis were still fresh. Reading it now, the document seems like it was written by someone else. This week is bringing some of those old emotions back to the surface but they are nothing like they were at the time. But as you can see from the post about last year's ARD, these are never any fun. This one won't be any different. They all serve as reminders about the loss of the dream we experienced three years ago.

Like Emily Perl Kingsley said in her 1987 essay titled, "Welcome to Holland", the pain...will never, ever, ever, go away...because the loss of that dream is a very very significant loss."

Damn

The Reevaluation - Here We Go Again

Right now, the school district is performing its 3-Year reevaluation on Robbie. This is the third such evaluation he's endured. The first one, performed in December of 2005, was a cursory evaluation where they concluded that he might be autistic. The first complete evaluation, performed in March of 2007, determined he was autistic (or PDD-NOS/WTF?). The days we received the results of these previous evaluations are also known as "the two worst days of my life." We'll find out the results of this evaluation on March 12, during our next ARD meeting.

The other day, Joy asked if I was nervous about the reevaluation. With a hint of cheery, Irish optimism, I replied:

"What in the hell could they possibly say that's worse than what they said the last time?"

The truth is, I did have one fleeting worry. I worried that they might say he wasn't autistic. How nuts is that? I imagined what would happen if they removed the services and support - that life-changing support that has allowed him to flourish so much this year. And for a moment, it scared me. During our last meeting at the school, however, they confirmed they would not be removing the autism diagnosis. Unsurprisingly, this didn't really make me feel much better.

During the first two evaluations, I was in denial. When you're in denial, the enemy is truth. Now that I've moved out of denial (though it's still an old friend that visits from time to time - see above: "one fleeting worry"), the enemy is ignorance. I'm hoping to learn if they see something in the evaluation that we've not observed. Sharing our observations about Robbie with the school (and vice versa) has become a powerful ally in improving his situation.

So here we go again. Looking back, I received the results of his pre-evaluation while sitting on an airplane bound for a two-week trip India. I received the results of his last evaluation defiantly telling the team there was nothing wrong. This time will be different. I want to hear the results.

Will a week from Friday be the third "worst day" of my life? I don't think so.

But then again, denial might just be paying me another visit. I miss him so.

The Movie: Temple Grandin

Nearly everyone even tangentially involved with autism knows that there's a new movie coming out on HBO tomorrow: "Temple Grandin". I'll take this opportunity to let those who aren't tangentially involved with autism know about it and share my thoughts about her.

Over the past four years, I've read many books on autism, attended several conferences, watched various television programs and even seen a few movies. The books included parent memoirs, memoirs of those on the spectrum, and even discussions of siblings. While I am by no means an expert and I have only scraped the tip of the iceberg in terms of the information available out there, I can say one thing without hesitation:

No one has more credibility when discussing autism than Temple Grandin.

Period.

In fact, there is no second place.

As I wrote to a friend in a recent email, pretty much everything she says or writes you can take to the bank. It's filter-less, no-bullshit, exactly-how-it-is stuff. There's no PC, "People First" language. There's no "we should be pampered" nonsense. Just, "Here it is. If you don't like it, tough."

After Joy and I saw her and her mother speak in February 2008, at the "Autism & Asperger's Conference" at South Fork Ranch (yes, the South Fork Ranch of J.R. Ewing fame), we had in our possession several tangible ideas of what we could do to improve our lives immediately. That never happened before nor has it since.

She clued us into the little know fact (at least little known to us) that CRT monitors could make people like her "crazy". She drove home the point that discipline was very important and that she needed to know there were consequences for her behavior. The day after the conference, we replaced our home computer's old monitor with a flat screen. Virtually all of the behavior problems Robbie had involving the computer disappeared overnight. Being specific about the consequences for his behavior, such as no computer or no television for hitting or not doing what he's told, gave us tools to help modify his behavior. Again, the results were nearly instantaneous.

We don't get HBO but I'm sure we'll see the movie soon. I expect it to be a very difficult movie to watch. If the movie stays remotely true to Temple's story, it will be very educational. Check it out if you can.

Trailer

The Departure: A Discussion About Thrillers and Literary Fiction

I'm departing from my normal posts to discuss an interesting article about the divide between literary fiction and genre fiction. It's a direction I'm going to continue to take on this blog as I expand my writing in the thriller genre.

In the article (click here), four thriller writers discuss this divide between literary fiction and genre fiction - thrillers in particular. Two of the participants, David Morrell and Karen Dionne, just happen to be two of my favorite writers. Karen also uses one of my favorite books, FINN by Jon Clinch, as an example of how a work of literary fiction can also have large commercial appeal. As Karen writes, the opening to FINN "could well be the opening of a thriller".

Here's the beginning of Karen's input: At one of my Backspace conferences an accomplished literary fiction author participated in a panel discussion on creating living, breathing characters in literary fiction. One of the things she discussed at length was the musicality of words, and the care with which she chooses each one. When I told her that I, too, spend a great deal of time crafting individual sentences even though I write thrillers, I could tell she didn't believe me.I think this is one of the misconceptions literary fiction authors hold toward thriller authors: that we sacrifice quality for the sake of the story.It’s true, the fast pace in thrillers means there’s little time for lingering descriptions or deeply introspective character development. But that just makes the opportunities more precious. And even in the most intense action scene, the rhythm of the sentences, their length, whether or not a sentence ends on a hard or soft note — all of that matters. It isn't that we don't care about elegant language, or that we can't write anything else; it's that we choose to write thrillers.

Well put.

The contributions by all four writers are all excellent. Give it a read.