Kicking and Screaming

The End: The Beginning

noreply@blogger.com (Brian Patrick Tracey) — Fri, 31 Dec 2010 14:52:00 +0000

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

noreply@blogger.com (Brian Patrick Tracey) — Sun, 26 Dec 2010 20:59:00 +0000

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

noreply@blogger.com (Brian Patrick Tracey) — Sat, 19 Jun 2010 16:27:00 +0000

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?

noreply@blogger.com (Brian Patrick Tracey) — Tue, 15 Jun 2010 21:59:00 +0000

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

noreply@blogger.com (Brian Patrick Tracey) — Sat, 10 Apr 2010 14:08:00 +0000

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

noreply@blogger.com (Brian Patrick Tracey) — Thu, 01 Apr 2010 23:47:00 +0000

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

noreply@blogger.com (Brian Patrick Tracey) — Sat, 27 Mar 2010 18:17:00 +0000

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

noreply@blogger.com (Brian Patrick Tracey) — Sat, 13 Mar 2010 04:45:00 +0000

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.

That definition is unsatisfying.

Does anybody ever wonder about the morale of a basketball team that wins the Big East tournament or a rock band playing in front of a sold out stadium? They perform "tasks at hand" and have "a common purpose" but why aren't we concerned about their morale? I don't know but we're not. We're usually more worried about the morale of members of the military or employees at a struggling company. This disconnect is why Webster's definition misses the mark.

When I think of morale, I recall P.J. O'Rourke's definition from his 1993 book, Give War a Chance:

"Morale...means how well people are doing when they're not doing well at all."

See? Now that makes a lot more sense. Because no matter how good morale is in the middle of a war zone, there's a good chance that most of the soldiers would rather be someplace place else - if not anyplace else. Probably at that rock concert or watching the Big East tournament.

I wanted to review the definition of morale with you first to give yesterday's ARD meeting some context.

It was a good meeting and several factors contributed to that:

A. Robbie has experienced phenomenal progress over the past 12 months;

B. We'd read the evaluation report in advance so there were no bad surprises; and

C. This was the best ARD committee assembled to help Robbie since we entered Autism World.

C really shouldn't have been a surprise since we'd already spent a lot of time with most of the ARD members But it was the first time it felt like the team really gelled and each member finally "got" Robbie; they knew the subtleties of what worked and didn't work with him.

The only new member to the team was the diagnostician who completed Robbie's reevaluation (they only participate in the ARD's every three years). Considering her predecessor three years ago opened that meeting - the one where we learned of Robbie's diagnosis - with the pathologically stupid question, "What do you think we're going to tell you today?", the diagnostician really didn't have a high bar over which to leap. Nonetheless, she did an excellent job.

We'd battled anxiety, depression and sleepless nights during the week leading up to the ARD. It was a pretty awful week. Apparently, this is to be an annual occurrence for us (after three years, you'd have thought I would have noticed this pattern earlier). But now it's finally over. It went well and there won't be another one until next year nor another reevaluation until 2013. Smiles and high fives all around, right? Morale's good, right?

Right.

We're doing well when we're not really doing well at all. Given the choice, we'd rather have spent the afternoon at a rock concert or watching the Big East basketball tournament or pretty much anything else. But this is what we had to do and we'll enjoy our hard-fought victories as best we can; knowing that we'd have preferred not to have had to fight for them at all.

The Reevaluation - Part Deux

noreply@blogger.com (Brian Patrick Tracey) — Tue, 09 Mar 2010 02:33:00 +0000

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

noreply@blogger.com (Brian Patrick Tracey) — Tue, 02 Mar 2010 00:05:00 +0000

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

noreply@blogger.com (Brian Patrick Tracey) — Sat, 06 Feb 2010 00:10:00 +0000

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

noreply@blogger.com (Brian Patrick Tracey) — Mon, 18 Jan 2010 01:37:00 +0000

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.

The New Year: A Time for Reflection and Hope

noreply@blogger.com (Brian Patrick Tracey) — Thu, 31 Dec 2009 18:42:00 +0000

The annual changing of the calendar causes most of us to reflect on the year past and ponder about the new one to come. Too often, these "reflections" boil down to, "Last year really sucked. I hope next year is better." I'm not referring to those for whom the year was a struggle. I'm referring to those for whom the statement itself becomes an annual event. Fortunately, I've rarely seen the new year that way.

A New Year

My favorite comment about the new year was on Twitter a few days ago: "I just checked my 2009 New Year's resolutions and I've got 54 hours to lose 13 pounds and write a novel." (my apologies to the author, I can't find the tweet to link).

For me, 2009 began against a bleak backdrop. Beyond the pay cuts, the market crash and the uncertain economic future, other things weighed on my mind. I fully expected to lose a parent in 2009 - so much so that I bought a suit for a funeral and after a promising start, Robbie's situation at school was deteriorating. I did not look forward to the New Year with a lot of hope.

Fortunately, things changed. After a lot of prayer and persistence by my brother and sister-in-law, combined with the healing properties of the almighty banana (it's a long story), both of my parents are still with us. In fact, I'm not sure I've seen them both stronger in years. To say I was grateful for this would be an enormous understatement. It's been a wonderful gift for all of us, especially Kelly and Robbie.

I've documented the changes in Robbie here in this blog and as challenging as the business climate was in 2009, the predicted economic catastrophe of biblical proportions never materialized (though I know it was very tough on many).

Through the power of social media outlets, such as Facebook and Twitter, 2009 brought back connections with people I'd not encountered in years. I can't count how many times I thought, "I haven't talked to this person in over twenty-five years" when adding a new Facebook friend. In some ways, I know many of these people better now than I ever did. In addition, I've made "friends" with people I've never met - or, at least, before I met them. At this year's Backspace Conference as well as a few Notre Dame Football games, I had the chance to meet many of these imaginary friends. Crazy thing this Internet.

If I was sum up the year in a word, it would be "turnaround".

A year in numbers (yes I keep track of this stuff):

Words written: 72,500 (49,000 book-related; 23,500 blog-related)
Books completed: 1* (another draft is likely necessary but it's readable)
Books read: 52 (presidential biographies, special needs memoirs, & thrillers top the list)
President Biographies Remaining: 1 (I've read a bio of every president except Jimmy Carter)
Songs written: 3 (one I actually like)
Overseas Trips: 7 (ties a record)
Days out of the Country: 59 (a record)
New States Visited: 1 (Alaska; four more to go)

A New Decade

Without the drumbeats of Armageddon upon us, like with Y2K, the arrival of a new decade has snuck up on us. I've barely given the idea any thought, whereas 2000 was anticipated long before Prince wanted to party like it's 1999.

While the 90's were a period of unimaginable personal and professional growth for me, the 00's were a period of unimaginable personal and professional adversity. The first half of the decade was marked by professional challenges I could have never fathomed. The second half was marked by one big challenge I never foresaw but consumed me like no other.

In a way, the end of the 00's, especially 2009, saw me fully emerge from my bunker. Like Punxsutawney Phil does on occasion, I popped out and didn't see my shadow. Instead of crawling back into the bunker, I hung around. The result has been an early spring. I can live with that.

What will tomorrow, or January, or 2010 or the 10's bring? I don't know. I'm anticipating the "turnaround" to become a "breakthrough" on several fronts. I'm not going to bore you with the details of those fronts in any New Year's Resolutions.

Let's just go live and find out.

Happy New Year, everybody. And thank you - for reading this far.

The List: Evidence of Discernible Progress

noreply@blogger.com (Brian Patrick Tracey) — Sun, 27 Dec 2009 01:11:00 +0000

Earlier in the week, I took to cleaning out my office. It wasn't terribly messy but the paper piles were beginning to take over and it was time to battle them back.

Armed with a shredder, I quickly cut the piles down to size - or at least to a manageable level. At the bottom of one of the piles, I came across a list I'd made on a piece of paper from a legal pad that surprised me. The list was titled:

BEHAVIORS I'D LIKE TO SEE CHANGE

I created the list last February, when we were at the height of our concerns about Robbie in school. I wish I could remember what inspired me to write the list. Was it a book I'd read? Was it a conversation I'd had? More importantly, why did I misplace it?

All in all, I listed nineteen items off the top of my head that I wanted Robbie to be able to change. After finding the list, I judged whether he's learned to change these behaviors at least 80% of the time (hell, I don't do all of the 100% of the time). I was shocked to determine that he'd changed all but five of the items. The five items I was unable to check off were among the five least worrisome behaviors he exhibited. They are:

- Play a board game without cheating or on his own terms
- Eat more foods, especially fruits and vegetables
- Improve his writing<
- Eat breakfast
- Sleep in his own room through the night

If I were to create another list, I'm sure I could find more than five behaviors I'd like to change. But knowing that those fourteen items will no longer be on it, will make it a much more enjoyable task than it was last February.

The Silence: Has it Been a Month Already?

noreply@blogger.com (Brian Patrick Tracey) — Fri, 11 Dec 2009 02:50:00 +0000

Part of the motivation in making this post is to avoid going a full month without making a post. Another part is to spread out the message a little bit.

As I've indicated, things have been going well in Autism World. Not perfect. But well. Last weekend we went down to Houston for a night. Kelly and Joy stayed at the Johnson Space Center as part of a Girl Scout outing. Robbie and I planned to stay at a friend's house. It didn't dawn on me until we were an hour away from home that I might have been making a bad mistake.

"Are we staying at a hotel in Houston?" Robbie asked.

He loves hotels. When we're on trips, he sometimes enjoys the hotel rooms more than the ultimate destinations. He was very upset to learn we weren't going to be staying at a hotel. His meltdown was muted. He managed his outburst pretty well and then he forgot about it - until we dropped Kelly and Joy off.

He protested a few more times on the drive over to my friend's house but recovered quickly. The stay was capped by my friend setting up his Wii the next morning and letting Robbie borrow his Mario Kart game. In some ways, it was a pretty uneventful night. In the most important way, it was a great night. Robbie and I had a blast. Thanks, Jon.

We're to the point where we need to set some new goals for Robbie. That's a good place to be.

Another reason for the silence (above and beyond a busy job, recovering from a trip to Asia, taking a trip to Europe and Thanksgiving since the last post), is that I'm focusing more on my fiction writing.

I posted about the Backspace Writer's Conference in May and how it energized me to refocus on writing fiction. While I haven't written as much since then as I would have liked, I have made strides on my work-in-progress (WIP), called Natural Born Citizen. I've also moved forward with querying my completed thriller, Slip Away, to prospective agents.

It's not enough just write more, you have to read more. After meeting Jason Pinter at the conference, I began to read his work and have really enjoyed it. I just finished The Fury. But if you're going to read some of Jason's stuff, I suggest you start with The Mark, then The Guilty, then The Stolen, and then The Fury. I also read David Morrell's first book, First Blood, and his latest, The Shimmer. Other thrillers that I've read since the conference include David Baldacci's The Collectors and Brad Meltzer's The Book of Fate. I just bought William Bernhardt's The Capitol Conspiracy. That's going to be my Christmas reading.

If you're thinking I should maybe do a little bit more writing than reading, you might be right. Nonetheless, reading good thrillers also helps me understand my market a little better and see where mine fit on the bookstore's bookshelves.

I've set up another blog for Slip Away. I haven't done much with it, yet. I'm curious if anyone reading this far is also interested in reading thrillers. If so, what would you like to see there? The first and only post there now is the short synopsis for the book - the kind you'd read on a book jacket. Check it out and let me know what you think.

The Tool: Project Spectrum

noreply@blogger.com (Brian Patrick Tracey) — Wed, 11 Nov 2009 15:31:00 +0000

Someone just linked this on my Facebook wall and I though it was cool as hell (thanks, Jason). We'll be introducing Robbie to Google Sketchup as soon as possible. The consistency in interests is startling (particularly Robbie's interest in film making).

Check it out.

The Point: What Is The Point?

noreply@blogger.com (Brian Patrick Tracey) — Wed, 28 Oct 2009 04:06:00 +0000

That's a darn good question.

What is the point of this blog or my story?

My long, reluctant journey into the world of autism began approximately four years ago. The first two years were marred by ignorance and denial, as well as a lot of pain and frustration. The next year and a half began the transformation of acceptance, largely by reading memoirs written by other special needs parents and writing one of my own. The process of writing the memoir was very therapeutic. I was able to articulate my own thoughts and feelings about the experience and support them with the advice and experience of others. For the last six months, I've been sharing my story on this blog.

I began the writing the memoir out of the frustration of just how much the experience sucked. I wanted others to know just how hard it was and, more importantly, point out to new fathers to the club that they are not as alone as I felt during those two miserable years.

The writing occurred in two major chunks. The first chunk was written during the summer of 2008. The second chunk was written from November through December of the same year - after a best selling author told me it was too short (way too short). The first chunk represented my story as I spat it onto the pages. It represented what pissed me off about the "process" and what I thought others should know. The second chunk represented others' interpretations of the same or similar events with some reflection added in. It's half emotion/half substantiation.

Part of what drove me to finish the book was my certainty that there was a need for a book like this from the father's perspective. Now, I'm not so sure. When I look at the memoirs by fathers on the bookshelves, I see some truly heartbreaking and/or inspirational tales.

James Reston Jr.'s Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey is a heart-wrenching tale. I had no idea while I was reading the book that Reston had been a central figure in the Nixon/Frost story. Even if I had, it would have seemed insignificant compared to his experience with his daughter, Hillary. Rob Rummel-Hudson's memoir, Schuyler's Monster: A Father's Journey With His Wordless Daughter, revealed a story with which I identified in many ways. The steps he took were very reminiscent to my own. The size of the footprints he left were not. At times, I find myself wondering if I could have handled what Rob faced and continues to face. Roy Richard Grinker's Unstrange Minds: Remapping the World of Autism was just so damn well researched that it was hard not to want to quote it on every page.

One book that I haven't read, but should, is Rupert Isaacson's The Horse Boy: A Father's Quest to Heal His Son. There are a few reasons I haven't read it. The biggest reason is that when it was released I had already read over ten memoirs about special needs and autism in a short period of time. I'd also just spent the previous nine months writing my own memoir. I was all filled up with autism and special needs. I couldn't take any more. I needed a break.

The second, and possibly more insidious reason, was that it was competition. I'd never looked at these memoirs in that way but an agent set me straight. After hearing the first two pages of Kicking and Screaming and complimenting the writing (which I enjoyed), she threw cold water on the assumptions I had held dear for over a year. It didn't matter that I was writing from a father's perspective. "Unless you're going to take your son to Mongolia and put him on a horse (referring to Rupert's story), you're going to have a hard time selling it without a platform," she said. I spoke with a few other agents and their take was the same.

Both Rob and Rupert will be hosting a panel at this weekend's Texas Book Festival being held this weekend in Austin, TX. If I wasn't going to the Notre Dame/Washington State football game in San Antonio, I'd be attending the event. I'd like to hear more about Rupert's story despite having not read his book.

A lot has changed since I banged out those first few words of Kicking and Screaming. I'm in a much better place about the situation. I've achieved a level of acceptance I found unimaginable a few years ago. I know another ride on "the cycle of grief" might be just around the corner but I'm an experienced passenger. I know how the ride ends. I'm just glad I don't have to ride it as often as I used to. Also, as I've noted several times recently, Robbie is in a great place. He's achieved a level of speech, self-regulation and social skill that I found unimaginable a few years ago. I'm awed by the progress he's made in such a short period of time. These two realities have taken some of the passion out of my quest. Autism World is home and it's become a pretty nice place. Not a perfect place. But a nicer place than it was not too long ago. It's hard to climb atop the soap box and exclaim, "it's okay!"

The point of this blog hasn't changed. I still want to inform people about Autism World and give those who already know the opportunity to relive some shared experiences. I'd like to provide a better forum for fathers to share their experiences but there are just so many hours in the day. As for getting a book published, I'm not too sure. The competition is stiff. Their stories are compelling. The road of platform creation, self-promotion and publication is not for the feint at heart. These parents are fueled by an endless well of passion that I lack at the moment.

I'm okay with that. Trust me.

The New Stat: 1 in 100

noreply@blogger.com (Brian Patrick Tracey) — Mon, 12 Oct 2009 23:39:00 +0000

Last week, a friend forwarded to me an article about the latest government study about autism (thanks, Kevin R.). The new study estimates the incident rate of autism to be about 1 in 100 rather than the previous estimate of 1 in 150.

My first reaction was pretty ambivalent. The incident rate in our family was 1 in 2. No study is going to change that. I'm not surprised that the number is higher than previously published but it didn't stir much in me. Many reacted differently than I did. Kent Potter of AutismSpot commented:

Am I speechless? Am I surprised? Am I at a loss for words? Am I dumbfounded beyond belief? Are you nuts? Of course I am not surprised, nor bewildered, and I am definitely not speechless. You don't have to be part of the Autism Community for long before you realize that the "official" numbers have been inaccurate for a long time. Ask most of us and you will likely hear that the numbers still are only a snap shot (or reference point) that is going to be updated again and the results even more "startling" to the general public.

Later in his blog post, Kent ventured into the area that's bothering me the most:

There is tremendous danger in spreading false or inaccurate "cures" or "fixes" when it comes to the world of Autism. I can't begin to tell you the number of times I have been told, "I had a friend, who had a sister who did ______(fill in the blank with anything you want...diet, pill, drops, therapy) and it cured their child of Autism. You should try it with Sam." Thank you, these are well intentioned offerings of insight and hope and I understand you are trying to help. This typically will lend me the opportunity to correct the confusion and help the kind person understand that the world of Autism is not a one size fits all. (my emphasis added).

I suppose that's the root of my ambivalence. The breadth of the autism spectrum is so broad that an incident rate feels meaningless to me. The challenges for those with severe forms of autism versus those with higher functioning autism or Asperger's Syndrome are so different that I'm beginning to wonder why they're even mentioned in the same sentence. The differences are a constant source of strife within the autism community that seems to grow every day.

As I was wondering how to approach the new statistic, John Elder Robison published an article on Psychology Today called "The 'Cure' for Autism, and the Fight for It". It articulated my concerns better than I could. John is probably one of the best known people on the spectrum today, so I take his opinions quite serious. From the Psychology Today article:

"Autism is the one medical condition I can think of where no one can agree on the legitimacy of any of its so-called advocacy groups....Autism's impact on people varies tremendously. Some people are totally disabled which others are merely eccentric. It's no surprise that the individuals at the two extremes would have totally opposite views of their condition.

The "High Functioning" (HF) autistic group says, "We don't need to be cured. We just need tolerance and understanding."

The "Highly Impaired" (HI) group says, "Enough with the understanding! We need some cures, fast!"

Parents of affected kids say, "I want my kid to have a good life, whatever that means or takes."

To a large extent, those points of view are mutually exclusive. HF people tend to see the HI desire for a cure as an indictment of their very being. "Get rid of autistic disability" morphs into "get rid of people like me," in their minds. From the HI perspective, the desire for tolerance and the HF statement that, "we are fine the way we are," seems to be a callous dismissal of their (HI) very real disabilities." (my emphasis added).

I encourage you to read all of John's article because it's excellent.

No wonder there's so much infighting in Autism World. We're fighting two completely different battles (at least). For some autism activists, though, it's a zero sum game. They only see their battle. They only win if others lose. If that means trying to discredit someone fighting a different battle, so be it.

1 in 100? 1 what in 100? I think we're quickly moving past the need for autism awareness. People are aware. What most people aren't is informed. Who can blame them? There's so much contradictory, vague and false information floating out there that I have a hard time considering myself as informed. Unfortunately, people residing in Autism World are part of the problem rather than the solution in this regard. If we can't recognize or respect the differing opinions within the community, how can we expect those outside of the community to do it?

The Streak: It Continues

noreply@blogger.com (Brian Patrick Tracey) — Sun, 04 Oct 2009 14:58:00 +0000

The school year is six weeks old. After the first two and a half weeks, I posted about my "Charlie Brownish hope" concerning Robbie's progress. Nothing's changed. It's rare that 'nothing' is newsworthy but this time it is.

Last year when things were going poorly, Robbie changed classrooms. He'd had problems going to school and when he arrived he failed to do any work. To address some of his issues, his new teacher implemented a scorecard to track his work completed during the day. There were five categories. If he completed at least four, he earned a sticker. When he'd accumulated five stickers, he earned either free computer time, free choice time or no morning work. Joy and I also added the stipulation that if he failed to get four "smiley faces" (that indicated he'd completed the work), he couldn't use the computer when he got home.

For the most part, he earned at least four "smiley faces" but there were a few two and three "smiley face" days. He also earned all five on many occasions.

Joy and I decided to copy this approach at home with his morning preparation. His morning scorecard included five categories as well. The categories were: wake up , brush his teeth, get dressed, get in the car and get out of the car at school nicely. If he failed to get four "smiley faces" for his morning preparation, he wasn't allowed to use the computer when he got home from school. Like in school, he almost always earned at least four "smiley faces" for his morning preparation. Five was very common. However, there were still a few days when he'd lost computer time because he didn't wake up and go to school nicely.

These two scorecards were very effective tools. Towards the end of the year, if he failed to get four "smiley faces" he wouldn't even bother telling us when he got home. Instead, he just went straight to him room.

This year? Both scorecards have disappeared. They're obsolete. He goes to school nicely in the morning without hesitation. He does all of his work at school without a problem. He even does homework, which we assumed was going to be the monumental battle of second grade. If we were keeping score, he would have earned five "smiley faces" for both scorecards every single day of the school year.

It's as if a light switch was turned on. This wasn't a gradual change. It literally happened overnight. Roughly twelve hours before the bell sounded for the first day of school, Robbie had one of his biggest and longest tantrums we've seen in a while because he didn't want the teacher he'd been assigned. A call from one of his classmates saying how happy he was that Robbie was going to be in his class flipped the switch. Since then, school just hasn't been a problem. To say we're overjoyed would be a significant understatement.

In September, I posited that the changes could be attributed to Joy's efforts on teaching him the cause and effect of his behavior at school and summer school, a change of medicine, or the quality of his new teacher. It's like a combination of all three.

A few weeks ago, someone stated, "I think Robbie's outgrown this Asperger's (Autism) thing". As much as I want to believe that, I know it's not true. A few years ago, I might have let myself fall into that trap. Now, I realize I can't afford to. There are still plenty of signs to debunk that claim. Nonetheless, we appear to have crossed a very big chasm. What that means is we can now drill down and focus on other areas, especially the area of social skills, that will make or break Robbie's success as an adult in society.

I'm not going to lie, though. I think those chances have tripled over the last month. That might be a trap, too. But it's one I'm willing to walk into.

The Hard Truth: Being Different

noreply@blogger.com (Brian Patrick Tracey) — Wed, 23 Sep 2009 01:12:00 +0000

I'm a big fan of the web site, AutismSpot. One of my favorite aspects of AutismSpot is the video section. The videos are made by all types of people involved with autism - parents, therapists, educators and people on the spectrum themselves - and they are designed to provide a first-person point of view about all aspects of it.

My favorite contributor is a young man by the name of James Williams. According to his AutismSpot biography, "James is a successful, 21 year old college student studying to become a Special Education Teacher. James shares his experiences and perspective as a young adult living with Asperger's Syndrome."

Since James is 21, he's old enough to understand the subtle implications of his Asperger's Syndrome but young enough to remember what it was like to be a child with Asperger's (even though he was diagnosed when he was eleven). For me, he's the voice of Robbie thirteen years from now telling me, "This is what you should do!"

His most recent contribution is titled, "Being Different". He cuts through to the very heart of the primary issue I've had with Robbie's autism; accepting the fact that his is different. It's not because of how I feel about him but because I'm terrified about what it's like for a kid to be different.

Unfortunately, AutismSpot doesn't provide the ability to embed videos. Here's the link to James's video.

James opens the discussion by reminding us that "kids are cruel". They are. That's just part of life. We've all been through it and, whether we want to admit it or not, we were likely a victim or a perpetrator at sometime during our childhood. For kids in elementary school and junior high school, it's hard to be different. We know this as adults. We have pretty good memories.

He tells about how hard it was to be different and how taunts such as "loser" had an impact on him. Since he could tell he was different, he started to believe them. It wasn't until he received his diagnosis that he could identify why he was different and began to be freed from some of the negative aspects of it. It was in junior high school that he learned, "By telling people, I was actually improving things." When the other kids understood there was a reason for his being different, they became much more accepting. In fact, some even began to help him. Not only were the other kids more accepting, James feels that most children who have been diagnosed with autism can accept who they are.

Unfortunately, kids aren't the biggest problem. Recalling what we were all like in junior high school, I find this hard to believe but James is quite blunt about where the biggest issues lie.

"One of the biggest problems I see is that parents have a hard time accepting that their child is different."

And there it is.

I winced the first time I heard him say it. I'm guilty as charged. I've been that guy and, to a degree, I still am. A child who has high functioning autism or Asperger's Syndrome gives very few physical clues as to their condition. They look just like any other kid. When I first heard the diagnosis, I was adamant that this was not a label I was going to hang around my child's neck. Why should I do that to this beautiful child? I thought it was the cruelest thing I could do ('cruel to whom?' I wonder now). But James's message is clear, "Don't be afraid to talk about autism. Don't be afraid to tell people that your son or daughter has it."

This might sound simple enough and even obvious. But for even a guy who blogs about autism and has written a memoir about autism, I still hate telling people about it for the first time. I really do. If I ever get the book published, you'll read that it took me nearly two years to tell someone about it for the first time and it was a person I'd previous only spoken with once the past twenty years. I selected this person because he had two children on the spectrum and I wanted to hear from someone who knew what I was going through.

That's a long time to be silent about the most important thing that's going on in your life.

I find it's much worse in a conversation than in writing via Facebook or something. In a conversation, I need to develop a whole lot of courage first and then I just blurt it out. After that, it's hard to shut up because I've balled it up for so long.

Joy and I were counseled about sharing his diagnosis by Robbie's grade school counselors. They recommended that we explain the situation to his classmates. Their evidence showed that when kids learned about the situation (even as young as kindergarten) they were much more accepting. They've even seen cases where bullies would protect rather than target kids with autism, if they know what was going on. I hated the idea of telling the kids with a passion but I went along with their advice - and it was excellent advice. Fortunately, one of the counselors has been kind enough to do the communicating to the classes. His classmates over the years have been nothing but helpful and accepting of Robbie, even during some of his meltdowns. I'm always touched by the kindness they show him.

I don't know now if this is unique for fathers or if there is some other reason I reacted this way. It's clear I'm not the only one. Like the title says, I went into Autism World "Kicking and Screaming". Now that I'm there, I still have the urge to throw the occasional kick here or there once in awhile.

The First Days of School: Charlie Brownish Hope

noreply@blogger.com (Brian Patrick Tracey) — Thu, 10 Sep 2009 03:28:00 +0000

It only seems like yesterday that I was posting about the last days of school. But here we are again.

After what can only be called a very successful summer (with several bumps in the road), I still found myself extremely nervous about the new school year. Maybe it was the "I hate you!" Robbie shouted repeatedly as I dragged him into the hellish first day of summer school in June. Maybe it was the "I hate her! I'm supposed to be in Ms. Soandso's class!" storm we endured the night before the first day of school. Or maybe I'm just a worrier.

Three weeks into it, school has been a borderline miracle. We have yet to have a morning meltdown (including every step: wake up -> get dressed -> get in the car -> get out of the car). He's doing all his work in school. We've had zero bad reports so far (other than a few minor concerns, like he didn't want to do something in gym or he didn't want to go to speech and be separate from the classroom).

Why the big change? There could be a few reasons:

1) He does not want to go to summer school next year. Joy has done a wonderful job of explaining the cause and effect of his school behavior and summer school. Last year he "qualified" for summer school. He really doesn't want to do it again.

2) He has an excellent teacher. She's certified in special education and seemed to be ready from the start to have Robbie as a student. We met with her a few days before school and exchanged ideas. She met with his teacher from last year to learn what worked for her. She was prepared.

3) He's taking a new medicine. He recently switched from Strattera to Concerta to deal with ADHD issues. I'm glad Joy made this decision with his doctor. The changes were almost immediate and all positive.

4) He wants a Wii for his birthday (which is Monday). We'll see on Tuesday if this is the driver.

We're trying to enjoy this the best we can but it's hard not to wait for the other shoe to drop. Or for Lucy to pull back the football. Or some other cliche. When these parties end, it's a crushing blow. It's hard not to let them erase the good experiences no matter how long their duration.

For now, we're just going to enjoy the hell out of it. If something changes, it changes.

The Trip: Summer Vacation

noreply@blogger.com (Brian Patrick Tracey) — Tue, 11 Aug 2009 23:56:00 +0000

Tomorrow we leave for Western New York to see my parents and my brother's family. It's a trip Robbie's had etched into his mind for many months. "On August 15th, we're going to New York on the plane," he announced early in the year. When I checked August in my work calendar, sure enough "We go to New York" was scrawled on the 15th. Breaking the news that we'd be leaving on the 12th wasn't as easy as you might expect. Once he accepted the change, he instructed me to change my calendar.

Fearing, well, everything about flying with the kids, we usually drive 1400 mile trek. We've flown a couple times in the past with mixed results, including a full-blown temper tantrum at Toronto's Pearson International Airport that I won't soon forget. Most people think we're nuts to drive it but the constant low level anxiety of knowing that he could become overwhelmed at any moment was a powerful source of motivation. There's a lot to be said to have full control over your mode for transportation.

Since Robbie brought up the idea of flying, I figured I'd empty what was left in my frequent flyer account and give it a shot. It's a statement of his progress over the past few years and our confidence in being able to manage whatever might arise. Given the successes we've had this summer, I'd say it's a pretty good bet.

I'll let Bruce Springsteen narrate our destination:

Who knows, maybe we'll take another cruise on the canal this year.

The Getaway: Alaska

noreply@blogger.com (Brian Patrick Tracey) — Wed, 29 Jul 2009 23:43:00 +0000

Last weekend, Joy and I headed up to Alaska for a long weekend to celebrate her birthday. It was our first vacation together without the children in nearly five years and the first post-diagnosis (excluding an overnight in NY together for a work function last year that doesn't quite count).

That's too long. Way too long.

Parents, especially parents of special needs kids, need time away alone together. To quote the University of Notre Dame's President Emeritus, Rev. Theodore Hesburgh, "the most important thing a father can do for his children is to love their mother." Not give them toys. Or take them to McDonalds. Love their mother.

The intensity of dealing with special needs (or even children in general) focuses so much attention on the child that other relationships suffer. It almost has to. There's only so much attention available in a day and a special needs child takes up a lot of it. That's just the way it is. I mentioned the importance of addressing the needs of the siblings in the review of The Black Balloon below (because I think those needs are widely overlooked). It's also important, if not more important, to address the needs of the marriage. The marriage has to be the priority, even ahead of the children.

We need a break. We have to get away from it all. Vacations, dates, and even long lunches alone are all necessary. Joy and I are fortunate that I was able to amass enough frequent-flyer miles and hotel points to nearly cover the entire cost of the trip. If not for that, we would still have to do something; even stay someplace ten minutes from our house.

The "where" is rarely the problem. It's the "how" and "who"? How can we leave our children for so long? Who will take care of them when we're away? These questions can easily derail any attempt to get away. I know. It's been five years. My advice is make answering them a top priority, even if it only means a day or two away. It's an important investment - one too valuable not to make.

(NOTE: I've turned off the comment control for now. Apparently, Google doesn't much care for posts without comments so feel free to let them fly, especially on any past posts - wink, wink, nudge, nudge)

The Conflict: Why Can't We All Get Along?

noreply@blogger.com (Brian Patrick Tracey) — Wed, 22 Jul 2009 02:58:00 +0000

I think John Elder Robison knocked this one out of the park. His post on Psychology Today addresses one of the most frustrating things I confront in the autism community - the infighting. From John:

Why can't we all get along? The many faces of autism. Why do we fight?

Just this morning I was reading a post on Autism's Gadfly, and it made me think about the tremendously different wants and needs of people at various points on the autism spectrum.

His motto is, We don't want no stinkin neurodiversity! We need a cure.

In my writing, I have said, I don't need a cure; I just want compassion and understanding.

Those statements seem pretty opposite to me. Yet we are both adults with autism. How can our views be so different? That is the essence of the problem. We have the same diagnosis, but we are impacted very differently. (Click here to read the rest).

The Research: Water is Wet

noreply@blogger.com (Brian Patrick Tracey) — Sun, 19 Jul 2009 01:43:00 +0000

According to a study by the University of Washington:

Mothers of children with autism have higher parental stress, psychological distress

Researchers at the University of Washington's Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children's problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism. (Click here to read the UW press release).

My post's title refers to the press release's headline more than the study. It was an unfortunate choice of words. Many picked up on the obviousness of the statement, including the New York Times. It shouldn't be news that mothers of children with autism have more stress than mothers of children who are neurotypical (though, I am sure there are cases where that is absolutely not true). I think it's safe to say, however, that the degree of increase of stress is not widely known.

Another comment I've read in regard to the study has been, "What about fathers' stress?" Again, the release's shortcomings come into play. They probably should have at least addressed the topic. And, again, the New York Times picked up on it. They asked Annette Estes, the director of UW's Autism Center directly about the absence of any mention about fathers. According to Ms. Estes:

"We did try to study dads. When we started this study, the dads were not as likely to fill out the questionnaires. (And in other news, the sky is blue).

Ms. Estes went to say that although they didn't have enough of sample from the fathers; the dads were "really similar to the moms".

This absence of a sample from fathers is at the core of why I wrote Kicking and Screaming. Fathers don't like to talk about autism. I know I didn't - at least, not until I could discuss it with someone who "got it" (e.g. a fellow member of the club). Frankly, I still don't. Don't let the blog and the book fool you. As a friend once commented, "I bet this is an easier topic to read and write than to say and hear". This silence should be fertile ground for researchers like UW's Autism Center and others - if they could get any fathers to participate.

The key observation of the UW study was that the behavior problems associated with autism were the cause of increase of parental-related stress in mothers of autistic children than mothers of children with development delays. As a result, the researchers now believe that when choosing early intervention programs, those that address behavior problems should be a priority.

Bingo. I agree completely. Joy and I and several other parents we know have come to the same conclusion. We all wish we had addressed the social skills much earlier in the process.

Another conclusion of the study, one that the researchers found counterintuitive, is that no link was found "between a child's decreased daily living skills (such as dressing or toilet training) and increased parental stress and psychological stress".

I agree. I find that counterintuitive as well. I imagine there might be a difference between what is "hard" and what is "stressful". With behavior problems, fear is always lurking around just below the surface. A telephone call during the school day is a source of trepidation. Interactions with other children can be a roll of the dice. A simple request like, "let's go out to eat", will very likely be met with a tantrum. If you enter your child into a situation that you're not sure he or she can handle, you're on guard for that outburst to occur. You know if it does, everyone around you will be focused on you and your child and, as most of us know, they are usually not sympathetic eyes. Just judging ones. This doesn't even take into account the number of situations you avoid with the child because you are certain they cannot handle it.

I have one concern about the study. I'm not a fan of "Who Has it Harder?" contests. As hard as I think our situation with Robbie has been, I get no comfort from knowing "at least he's not (some awful thing worse than high functioning autism)". The hardest challenge any parent faces is their hardest challenge. I doubt any parent engaged in a parental struggle feels better by the knowledge, "at least our child's not autistic". Nonetheless, the lack of knowledge and understanding about autism creates a strong case for the need to educate the public about the issues and challenges everyone dealing with it has to face. It just doesn't have to occur at the expense of anyone else.

UW's study is an interesting one that probably created as many questions as it answered.

Welcome to Autism World.