Tuesday, March 31, 2009

The Fantasy: Punching Dustin Hoffman in the Face

Okay. That's a bit strong. I don't really want to punch Dustin Hoffman in the face. I have no issue with Dustin Hoffman personally. He's a great actor who's portrayed many wonderful characters in some of the best movies of all-time, like 'The Graduate", "Kramer vs. Kramer", "All The President's Men", "Runaway Jury", and "Ishtar". He's also the source of many memorable movie quotes over the past forty years.

Who doesn't love the following heavily misquoted line:

"Mrs. Robinson, you're trying to seduce me. Aren't you?"

My favorite line of his is from "Stranger Than Fiction":

"Little did he know? She said that? I did a whole seminar on little did he know!"

My issue is with the character Raymond Babbit from the movie "Rain Man". The movie is over 20 years old but most people know the reference (unfortunately). The character has several memorable lines ("I'm an excellent driver" and "K-Mart sucks"), which has helped the movie's longevity. But the character has become a great source of frustration for me.

Raymond is a savant, which is a rare disorder. People with several different conditions, including autism, may have savant syndrome. Yet, he has somehow become the picture of autism for many in this country. While the movie (and the character) may have brought some awareness to autism, it shined a light on only one of its rarest elements as it cast a long shadow over the rest of the autism spectrum.

As a spectrum disorder, trying to nail down one example of autism is like nailing Jello to the wall. It just can't be done. There are extremes at each end of the spectrum, with a seemingly infinite number of subtle differences and textures in between. Rain Man represents one very small datapoint along one end of this spectrum and an unusual one at that.

Sometimes, Rain Man presents a double-whammy for parents of an autistic child when the subject of autism arises. At first, he is the definition. After that, he's the relief. It goes something like this:

"My son's autistic."
"Autistic? You mean like Rain Man?"
"No. He's more high functioning."
"Oh, well. Thank God for that."

I've actually read someone try to sell that idea that "parents shouldn't worry about autism too much because not every kid ends up like Rain Man".

For a parent first receiving a diagnosis of autism for his or her child (at least this parent), there is no relativity along the autism spectrum. It's quite binary - a one or a zero. Either the child is autistic or he isn't (unfortunately, this train of thought reminds me of my new favorite joke: there are 10 types of people in this world - those who understand binary numbers and those who don't). I didn't think "Thank God Robbie's high functioning" for a long, long time. And when I did, it provided me no comfort whatsoever. Being reminded that others have it worse (and they certainly do) had no positive effect on me. It didn't make our lives any easier.
It didn't reveal any new therapies guaranteed to help. It didn't lessen the effects of Robbie's autism. It made me feel worse. Is that the objective for the comparison? I don't think so.

We need new characters anchoring society's image of what autism looks like; ones that accurately represent the entire spectrum. We need more heroes.

If I ever get the chance to meet Dustin Hoffman, I'll likely shake his hand and say, "Hello, Mr. Hoffman. Nice to meet you, Mr. Hoffman. Ishtar was awesome, Mr. Hoffman." I'll resist the urge of violence. If he starts quoting Raymond Babbit, however, I make no promises.

Saturday, March 28, 2009

The Cause: Investigating One Angle

This article was posted on NDNation. The featured couple are friends of a friend.

I like how the article tackles the "cause of autism" debate:

There is much debate about what causes the disorder. But this story is strictly about how genetics could play a role....Autism is so complex researchers and parents are exploring causes from every angle. This is just one approach and would not apply to every child because there is such a wide spectrum.

I like that the article does not engage in the debate but rather explores one option. As parents, the "cause" debate can become a passionate one. Because we believe genetics played a heavy role in Robbie's autism, I'm drawn to this article. But as the article says "this is just one approach."

While we believe genetics played a role, I know many people who believe vaccines played a significant role in their child's autism. Who am I to say they're wrong because I've had a different experience? I encourage parents to do their own homework, perform their own research and come to their own conclusions. Don't listen to what I say or what anyone else says. Our experience may not be applicable to yours. You know your child best - you're in charge.

This is just one angle.

Thursday, March 26, 2009

The Blog: Kicking and Screaming

As a few of you know, I've been working on a book about my experiences as a father of an autistic child. The book, titled Kicking and Screaming: A Father's Reluctant Journey into the World of Autism, is close to completion and I hope to begin querying agents soon. Several people (including the smartest person I know - my wife, Joy) have encouraged me to create a blog to further share my experiences. It's taken some time to build up the nerve to do it but here it goes.

Here's the link to the initial post (Joy smartly recommended that I write several posts before launching). I hope you enjoy it.

Monday, March 23, 2009

The Second Day: Continuing Success

Although I'm thousands of miles away, reports are that Robbie's second day in his new class was a smashing success. Even with a gap of ten days in between, he went to school cheerfully (unlike anything we've seen in a long time), did all of his assignments in class (I'm not sure that's ever happened), and came home cheerfully. The difference is so striking I can't help but wonder what's created such a change in behavior.

I've just spent the last twenty minutes talking to him over Skype. He's so happy!

These little victories are life changing events. Usually, I can figure out what's caused them. This, however, is a complete mystery. Maybe when I'm back, I'll figure it out but for now I'm going to enjoy it.

Joy has been working all weekend on a surprise for me when I get home. Of course, it took Robbie about five seconds to blow that surprise, but hearing him talk so excitedly about it made it all worthwhile.

I'm enjoying my time in China but I can't wait to get home. I'm missing some good stuff.

Saturday, March 21, 2009

The Gaffe: A Presidential Foul

According to the United States Bowling Congress's Rule 5a:

A foul occurs when a part of the player’s body encroaches on or goes beyond the foul line and touches any part of the lane, equipment or building during or after a delivery...When a foul is recorded the delivery counts, but the player is not credited with any pins knocked down by that delivery.

I don't want to discuss politics on this blog very often. There are two reasons for this. First off, to do so runs counter to my assertion that autism (and special needs as a whole) does not discriminate by race, religion or political persuasion and therefore, we should not let these distinctions divide us. I've found that the commonality of our experiences should be a tighter bond than these other traditional differences that have created such carnage and mayhem in human history. Secondly, my political views run counter to many I've met in the special needs area and I'm likely to alienate more people than I attract with them.

However, as I sat in Hangzhou, China - 7,500 miles away from my home in Texas - I was unable to avoid this presidential misstep. Considering the relation of the topic to autism, I feel I have to at least comment on it, so here it goes.

President Obama's joke about the Special Olympics was a stupid comment from a man who holds the position that carries with it the largest bully pulpit in the world and should have known better. I admit I was disappointed by it but I wasn't offended by it. My initial reaction was "Wow, he really screwed that up."

Ironically, hours before the program a friend of mine, a strong supporter of the president, asked me what I thought about the appearance on The Tonight Show. In hindsight, my response reads pretty funny: Obama's smart to go on Leno. Easy gig. Brings out his likable side. Frankly, I think he can achieve a lot. If he sort of wants to change the tone a bit, that's a good place to start. He apologizes better than any president I've seen (I'm serious about that). What a better place to do it?

Okay. Maybe not.

In my opinion, the president deserves all of the backlash he's received - real and contrived (mostly contrived) - not because of the merit of his statement (or lack thereof), but because that's how politics is played in our country and has been since its inception. Say or do something that can be used against you by your political opponents and it will be used. No exceptions. If someone had told us on Wednesday night that the president would make this gaffe, most of us could have predicted the specific reactions by Democrats and Republicans alike, as well as certain news organizations and even individuals with remarkable accuracy. Strong supporters would be disappointed but not waver with their support of their president (or simply think it wasn't that big of a deal). Strong detractors would point to this is a sin of ginormous proportions proving his unworthiness. Politicians who would stand to gain from the mistake would take their prize.

It happens.

It happened to Andrew Jackson and his "gaffe" was that he unknowingly married his wife Rachel while she was technically still married to her first husband, thirty years before the 1828 election (which is considered to be one of the nastiest elections ever held because John Quincy Adams's attacks over this alleged "adultery" and "bigamy" were so vicious). It happened to poor Gerald Ford in a 1976 presidential debate ("There is no Soviet domination of Eastern Europe, and there never will be.."). It cost James Blaine the 1884 election to Grover Cleveland and he was only sitting next to the guy who made the gaffe (a protestant minister who "chided those who had left the Republican Party by stating, 'We don’t propose to leave our party and identify with the party whose antecedents are rum, Romanism, and rebellion.'” - a clear insult to Catholics and Irish voters in New York). Karl Rove and David Axelrod didn't invent this sport, they're merely the current stars of the game.

Many Republicans were quick to point out that "if Bush had said that.....(blah, blah blah)" and they're right. Though, their level of prognostication is akin to predicting "if I go outside in the rain without an umbrella, I'm gonna get wet." If former President Bush, or some other prominent Republican, had made the same gaffe, strong supporters would be disappointed but not waver with their support of their man or woman (or simply think it wasn't that big of a deal). Strong detractors would point to this is a sin of ginormous proportions proving his or her unworthiness. Politicians who would stand to gain from the mistake would take their prize. We know how Fox News would react. We know how The New York Times would react. We could almost write their stories for them.

My biggest complaint about the president's gaffe (and the closest thing I'll make to a political comment about it) is that it represents yet another example of the lack of discipline in his communications. The campaign communications juggernaut that we saw last year has yet to arrive to the White House. His predecessor was never thought to be the "Great Communicator" and he easily lived up to (or down to?) that expectation. The gap between the expectations of the Obama Administration's communications skills and the results we've witnessed thus far, however, is enormous. He owns this. There's no one to blame for it.

As I presciently mentioned to my friend prior to the show, the president apologizes well and he did so again here. The apology was swift and to the point and anyone not trying to take political advantage of the situation will be fine with it. Three and half years from now (if not sooner), we will see this clip in a political ad. An attempt (or several attempts) will be made to make this a reelection issue. If you're going to be offended by somebody doing that, express your outrage now. Get it out of the way because it is going to happen.

The president's joke went over the line - the foul line. No more. No less. In accordance with Rule 5a, the foul was recorded; the interview with Jay Leno counts; but he won't be credited for any of the pins (or Republicans) he knocked down during it. The next time he steps up to the line, who knows? Maybe he'll throw a gutter ball. Maybe he'll throw a strike. Either way, it has nothing to do with autism, special needs or the Special Olympics and neither did the president's gaffe. It was a just a stupid thing to say.

This isn't another Dennis Leary moment.

Friday, March 13, 2009

The Switch: A Change of Scenery

Well, Robbie started in his new class today. It was a bumpy transition and it sounds like he was genuinely upset about it - not angry and protesting (there is a very big difference). However, the effect seems to be immediate. A different child came home from school today; one who actually did some work.

It's only one day but I'm thrilled it went so well. I'm also a little sad because we all liked his previous teacher. Thankfully, she's still very involved. I know better than to get too excited over one data point but next week is spring break and we won't get another data point for another ten days. Hence, I'm going to enjoy this.

Thursday, March 12, 2009

The ARD: A Real Downer

Admission, Review and Dismissal Committee Meetings, aka ARD Meetings, are critical events for parents of children with special needs. During these meetings, parents meet with key representatives of their child's school, such as the teacher, special education administrator, speech pathologist, vice principal and principal, to discuss the child's Individual Education Plan or IEP.

I've been attending ARD meetings for nearly three years and I have to admit, I can't stand them. It has nothing to do with the participants. The people from Robbie's school and the school district are top notch. It's the meetings themselves - the fact we have to have them at all. Each time I want to run from the conference room screaming.

Today's ARD was the hardest thus far - only because I've blocked out all memory of the others. The good news is that Robbie is smart - scary smart. Everyone in attendance was unanimous about this. Last year, this was a concern; a concern I'm quite glad to be relieved of. However, he's having a hard time taking direction (translation - he won't do any work). The solution is to have him change classrooms for the rest of the year. It's a good suggestion. I don't love it but I think it's the right thing to do. After hearing the enumeration of things he won't do (reinforced by the absence of anything to see at the school's open house later that evening), it's clear our planned focus on improving his social skills has escalated to an immediate priority.

Autism World is relentless. Days like today make me want to crawl back in to bed, pull the sheets over my head, and make the whole thing go away.

Oh, wait. That's what I did the first year and a half after hearing Robbie might be autistic.


Wednesday, March 11, 2009

The Launch: Another Festivus Miracle

Despite a big drop in temperature outside and a morning downpour, we had another successful, if not soggy, launch getting the kids to school today. No kicking and screaming (by any of us, including me). A little children's Motrin, a tight hug with a firm back rub and a good night's seem to do the trick for Robbie.

I'm looking forward to more days like these. I know he's trying his best. It's us parents who forget what's going on. Many of the challenges he's had over the past few weeks have been because the effects of his bronchitis from last month continue to linger. Sometimes I think I need someone to write a social story for me:

When Robbie is having a tough day, he might not be feeling well.

You have no idea how that simple phrase could have saved us days of grief over the past few years. When the tantrums come, though, logical thought is usually the first casualty. The focus on calming him (and ourselves) often overlooks the potential causes. It's a good thing I don't wear spurs. I'd have holes in my calves from the number of times I've kicked myself over this.

Tuesday, March 10, 2009

The Field Trip: A Journey Through the Woods

This morning, I joined Robbie and his first grade class on a field trip to a place called the "Outdoor Learning Center". I was a little apprehensive about the day because Robbie hasn't been feeling well lately. I don't know if it's true for all kids on the autism spectrum but when he's not feeling well, the opportunity for a tough day is just around the corner. Most of us can shake it off when we're feeling 90% - 95% but with Robbie it puts him out of sorts. Add to that the fact he's still got almost all of his strength and you've a explosive mixture.

We started the day with some children's Motrin and firm back rub, both of which did wonders. He probably had the best morning before school in three months. We were off to a great start.

I arrived in his classroom at 9:00 AM. He was already making noises about not wanting to go "have a party on the field trip". Several of his classmates lined up to assure him that it was going to be fun and he was going to have a good time. For me, this was the best part of the day. Despite overwhelming evidence to the country, I worry about how the other kids treat him at school. I've heard and read too many stories about autistic kids being teased and bullied to shake that fear. Time and time again, though, the students at his school surprise me.

He and I sat together on the bus, which was wonderful (I don't think I've been on a school bus since 1983 - it was a very strange feeling). We held one of the longest conversations we've had in weeks. He let me know all about the latest activities on Poptropica and Build-a-bear and his other favorite websites. He also reiterated his position that Family Guy is not nice. I got him to look at me while he talked and do the same when he listened.

At the Outdoor Learning Center, the kids learned how to classify animals and plants. We looked at several mammals, reptiles, amphibians, fish, insects and spiders, asking all kinds of questions to help us classify them. He even pet a bunny and a snake (he wasn't that interested in the rooster). Outside, the kids learned about all of the elements of a plant (for those of you wondering: seeds, roots, stems, leaves, flowers, fruits, and seeds). When asked to name one of the elements, Robbie jumped right in and offered up, "Flower!" He was the flower guy for that part of the trip.

After three hours, he was running out of gas (like most of us) and thankfully, it was time to go. While making the trek through the woods back toward the bus, he started making noises about wanting to go home. Anytime there's something for the parents at school, he tries to use it as an opportunity to leave school and go home early. I started to worry that the heretofore pleasant day might be altered by a tantrum.

We found our way back to the bus with the other students and he sat next to his teacher on the bus ride back to school. This was a good thing. It took his mind off of going home. When we got back to school, we walked to his classroom and he announced, "Daddy, it's time for you to go back to work." This was triumph. Considering the rough days we've been having at school lately, those words were music to my ears.

It was the perfect day all the way around.

The reward for this wonderful experience? Welcome Purples, the Lil Kinz Purple Goldfish, as the new member of our family. Adopted by Robbie on Webkinz at 7:50 PM, Central Daylight Time.

Friday, March 6, 2009

The Visa Guy: The Inside Scoop on the Global Economy

While most parents of autistic children and children with other special needs spend a lot of time directly involved with their children's needs or thinking about their needs or worrying about their needs, we still have other things going on in our lives. For me, my work causes me to travel quite a bit. This is a note about one of the funner aspects of that travel.

Being citizens of the US, we have the privilege to travel to many foreign countries without needing to obtain a visa beforehand. Not everyone has that luxury. Although there are still many countries that require US citizens to obtain a visa, such as China, India, Brazil, Russia and several others, that number is much smaller than for the citizens of other countries.

To many, getting a visa is a nuisance; an impersonal transaction of paperwork and passports. For example, people who work in big companies go through a dull and impersonal experience. The person requiring the visa hands his or her passport and paperwork to an administrative assistant who takes care of the details. A few days or weeks later, the passport is back with its shiny new visa inside. Voila! No fuss. No muss. These poor people are really missing out and they don't even know it.

For those who work in smaller companies and live in a city with a consulate, the experience is at the other end of the spectrum. They have to go to that country's consulate, wait in line and see first hand the process each country pursues for giving visas. They get to witness the bureaucracy in action. This is far better than the impersonal approach but it's a narrow experience. It's only one country at a time. I like my process better.

Me? I got a guy. I show up with my passport and paperwork and he takes care of everything. On top of that, he's very interesting. When I have to get a new visa, I always take my time and chat with him. Since he handles visas for all countries, he has the inside scoop on everything "visa". He knows what countries are hot, which are not and everything in between.

If you're wondering:

- China is not as hot as it was but is still steady.
- India's not hot at all (a few year's ago it was smokin' hot).
- Brazil is hot.
- Several countries in Africa are red hot.

I learned things about Africa I never knew. For one, it's becoming a big exporter of flowers and food. One country in particular has a very strong flower export business to Europe. I tried to do the math of the logistics costs in my head. I don't know how it's economical to grow flowers in one country and send them thousands of miles away but then again, I'm not the guy. He is.

The food story surprised me. He kept referring to 'whole food' but I didn't make the connection. He mentioned that there are many fertile parts of the continent that are suitable for farming. Since none of them are in developed areas, none of them have ever experienced fertilizers and pesticides. Then it hit me. He's talking about "whole food" as in healthy food. It made perfect sense to me. Africa could be poised to be the healthy food grocery store to the world.

If you're traveling to a country that requires you to get a visa, don't let somebody in your office take care of it for you. You should get a guy and learn things.

Disclaimer: I have no idea if any of this is actually true but it did turn what would have been a very dull fifteen minute transaction into an entertaining one.

Tuesday, March 3, 2009

The Anger: Going With It

I did something over the weekend I don't think I've ever done - I got mad at Robbie. Seven-year old boy with high functioning autism or not, I was steamed. I'm not talking about the flash of anger that occasionally occurs because I can't handle one of the tantrums - and sends me flying back on that wonderful cycle of grief. I'm talking about the normal anger that can occur among family members when one family member is displeased with the behavior of another.

Let's face it. Parents get angry with children. Children get angry with parents. Spouses get angry with each other. Children get angry with each other. Someone does something that pisses off another. That other person lets them know it (often by employing colorful language). They hash it out. They eventually apologize to one another. Then, it's over. That's normal for families.

To borrow a phrase from the Marriage Encounter people, "Feelings are neither right or wrong." I don't know if they first coined that phrase but it is easily one of the most important things I learned from them to help me with my marriage or any relationship. I've found that with an autistic child, however, negative feelings get a short shrift. Guilt has a nasty habit of getting in the way and leading us to believe the negative feelings are wrong.

"How can you possibly be angry with an autistic child? What's wrong with you? Are you some kind of monster?"

Last weekend, I decided to go with my anger. Robbie was treating me like crap. There's no other way to describe it. I was turning into his emotional dumping ground. Fights about going to school. Fights about getting on (and off) the computer. Fights about taking a shower and going to bed. Those were reserved for me. Happy times were reserved for Mommy - at least, that was how it was beginning to appear to me. Finally, I got mad about it - a full blown, storm-out-of-the-house, take a long drive to cool down angry. When I got back home, Robbie was asleep but I was still a bit miffed.

The next morning, he was back at it. "Daddy's a big meanie!' Still angry, I let him know how I felt about it in a calm even voice. I then asked him, "Do you like saying mean things to Daddy?" He said "yes", but I think it was more about how I asked the question rather than the question itself. I wanted to try out going with his negativity rather than trying to fight it or change it (the latter two proving to be wildly unsuccessful). I asked him a few more times until he realized what I was saying and answered, "y-no." I asked him a few more questions along those line and his answers implied he didn't like saying mean things and making Daddy feel bad. He soon snapped out of it and so did I. It was as if our mutual anger took its natural course.

In a short while, we were both better. I apologized. He apologized. He became pleasant. I did likewise. He read one of his funny books out loud and we told each other jokes. It turned into a very fun day.

For a change, I had a healthy emotional exchange with Robbie. I had gotten angry. Hashed it out. Then it was over. I worked through my anger with him rather than beat myself up for feeling that way. Guilt took a back seat this time.

When it was over, it was over. I felt pretty darn good.

The First Step: Publish a Post on Your Blog

Growing up in Western New York in the age of above-ground swimming pools without heaters, I'm accustomed to swimming in cold water - at least I used to be. The key to swimming in cold water was simple. Just jump right in. If you don't, someone's just going to push you in anyhow.

At first, you experience the initial shock, wondering why in the hell swimming in this godforsaken water was so damn important in the first place. After a while, your body starts to adjust and the shock wears off. Before too long you're enjoying the pool as much as you'd enjoy it if it was 80 degrees (my new lower threshold for swimming). And by the time you get out, you wonder what the big deal was all about in the first place.

Nearly every milestone I've achieved along this reluctant journey into the world of autism had to be approached like I was going to swim in cold water. Sometimes I stared at that water for months, even years, before deciding to jump in. Once I was in, my head started to adjust and the shock wore off. However, I've never wondered what the big deal was all about.

A little background.

In February of 2007, my son Robbie was diagnosed with Pervasive Development Disorder - Not Otherwise Specified or PDD-NOS, which,
when it was first explained to me, sounded like some kind of autism catch-all diagnosis. My opinion has changed little since then. "PDD-NOS is a high-functioning form of autism", is the second best explanation I've ever read to describe it. The best belongs to Robert Rummel-Hudson, author of Schuyler's Monster: A Father's Journey With His Wordless Daughter. When his daughter was diagnosed (incorrectly) with PDD-NOS, he didn't find the definitions any more helpful than I did. As he eloquently stated, PDD-NOS from the vantage point of the one giving the diagnosis appears to mean: "beats the sh*t out of me but I am a PhD from Yale so I can say that."

When my wife and I received the diagnosis, I was in deep denial about the entire situation. Prior to that, I had gone along with the difficult decisions we needed to make up to that point, such as to have Robbie evaluated in the first place and send him to a Preschool Programs for Children with Disabilities (PPCD) school
, but those isolated events had no effect on my overall attitude. In my mind, this autism thing wasn't real and all of this autism talk was going to go away soon. He's just Robbie. That's all. As a result, there's no reason to tell anyone about it and needlessly hang this label around his neck for the rest of his life.

In November of 2007, I had my first conversation with another father "in the same boat" - an event I had avoided from the minute I'd heard the word "autism"
two years earlier to possibly describe Robbie's condition. After I gave this father, a college friend and former Notre Dame Football player, the background of our situation and asked him for some advice, the first words out of his mouth were just what I needed to hear and opened the door that had trapped me in my denial for so long:

"Sorry to hear that Bru (my nickname), but I know what you're going through."

"I know what you're going through." That was the magic phrase. After that conversation, I began to slowly emerge from my isolation and begin my journey, which has included frustration, acceptance, connection and even a book. Making that first connection with another father of an autistic child helped me begin to open up about the topic I'd hidden from for such a long time and to understand how important it is for fathers to interact with others like us who "get it".

The idea for doing a blog about fathers and autism hit about a year ago. It sounded like a good idea at the time but I was terrified to do it. I stared at that icy water for a long time before jumping in and now that I've done it, I have to admit that the water is pretty damn cold and I'm still waiting for the shock to wear off.

Nonetheless, Step 1 for this part of the journey is complete.