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.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Thursday, December 10, 2009
Wednesday, September 9, 2009
The First Days of School: Charlie Brownish Hope
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.
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.
Thursday, July 16, 2009
The Movie: The Black Balloon
During my 13-hour flight from Chicago to Seoul the other day, I had ample opportunity to watch several movies. The airline had over twenty recent movie releases available. Not great movies. Just movies. Some of the classics included The Echelon Conspiracy, The International, and Good. I hadn't heard of any of them, but The International seemed familiar. All three helped kill a combined five hours of flight time. But when I broke down and watched 17 Again, starring Matthew Perry and Zac Efron, I knew I'd just given up. It was a cry for help.
Actually, I wasn't just giving up. I was avoiding something: A special movie called The Black Balloon.
The Black Balloon is an Australian movie whose cast includes Toni Collette. Collette is known for her work in many movies including The Sixth Sense, Little Miss Sunshine and the funniest chick movie I've ever seen, Muriel's Wedding. She is also one of the movie's executive producers.
The movie's brief description was enough reason for me to want to avoid it (from Wikipedia):
When Thomas and his family move to a new home and he has to start at a new school, all he wants is to fit in. When his pregnant mother has to take it easy, he is put in charge of his (severely) autistic older brother Charlie . Thomas with the help of his new girlfriend Jackie faces his biggest challenge yet. Charlie’s unusual antics take Thomas on an emotional journey that cause his pent-up frustrations about his brother to pour out.
To be blunt, when I'm on a 13-hour flight I really want a break from autism. To research Kicking and Screaming, I read plenty of wonderful stories about autism and while I learned a lot from all of them, they were rough emotional journeys. However, if I was going to stoop low enough to watch a movie starring Zac Efron (without being badgered by the kids to do so), I figured I should probably give Black Balloon a spin. As I expected, it was a very rough emotional journey.
I simultaneously liked and hated this movie. It was the first time that I'd experienced simultaneous conflicting emotions like that since reading John Elder Robison's Look Me in the Eye (where I laughed and cried at many scenes). There's something about autism that can combine humor and sorrow at the same time. Sometimes you really have to laugh at some of the most awful things. In that vein, Black Balloon has some very funny moments.
I liked and hated that it presented autism is all it's brutality. While I don't have direct experience with severe autism, I've read or heard firsthand stories similar to many of the scenes portrayed in the movie. I've also experienced most of the events firsthand but at a much lower magnitude (eg. the difference between severe and high functioning autism). This was very uncomfortable.
I liked and hated that it demonstrated the physicality of autism. We're a society that's become unaccustomed to parents being physical with their children for many good reasons. With autism, even high functioning autism, PDD-NOS or Asperger's Syndrome, being physical can be a requirement to restrain or even calm the child when he or she is having an outburst. The movie painfully demonstrates other's discomfort with the physicality. In the movie, Charlie is a big powerful teenager and he presents a physical challenge for his family as they try to manage his outbursts. Robbie is a small seven-year old and he often presents a physical challenge to us as we try to manage his outbursts. This is not a small concern for when Robbie gets bigger.
I liked and hated that it demonstrated the human capacity for some people to act like despicable f**king a**holes: rotten kids (especially teenagers); ignorant and vindictive neighbors; and judging, yet useless onlookers. I often wonder, "If I wasn't experiencing this, would I be one of them? Was I ever?"
I liked (but did not hate) that it was a realistic portrayal of autism. There were no happy miracles or major breakthroughs. I assume this is because it was made in Australia and not Hollywood. I don't think Hollywood has the discipline to make a film like this. They couldn't resist making the movie about the character of the most famous actor (Toni Collette) or having it focus on some sweeping unrealistic (or rare) turn of events. (As a tangent, the first movie where this aspect of Hollywood struck me was when I saw the Canadian film, Waking Walter: The Walter Gretzky Story. I thought, "there is no way that Hollywood could make a film about the Gretzky family and have the discipline to allow Wayne to be a bit character - far behind his father, mother, sister and his father's physical therapist." But I digress.)
I loved that the story was not about the autistic child or the parents. It was about the sibling, Thomas. I'm not shy about my belief that that I think the real people who get the shaft in the special needs world are the siblings. It's very hard on the children with the condition and it's very hard on the parents. But for siblings, it's a whole 'nother ballgame. The movie's portrayal of Thomas does justice to the fact of just how unfair a situation like this can be for a sibling. I liked that the movie allowed him to express real, yet very uncomfortable emotions. He's angry. He's embarrassed. He's crushed. He's humiliated.
I liked that it was Thomas's - and only Thomas's character to any real degree - that arced greatly in the movie (for you screenwriter wannabe's, I'm answering Richard Krevolin's question number 5 from How to Adapt Anything to a Screenplay - How do the characters change throughout the movie?). The story is basically Thomas's journey from anger to acceptance, even loving, with the help of his girlfriend, Jackie. She's the catalyst for his transformation. She's that very unique person who doesn't apparently have a tie to the special needs world but "gets it".
As a side note, if you want to read a great (yet challenging) book about siblings, I recommend Being the Other One: Growing Up with a Brother or Sister with Special Needs by Kate Strohm - also an Australian (what is it about the Aussies? They seem to really get this).
I can't recommend that everyone run to Blockbuster or Amazon or Netflix and rent/buy The Black Balloon. I found it hard to watch. In fact if it came on television and Joy was in the room, I'd change the channel. I think it would be far too difficult for her to watch.
But it's accurate. The movie's writer/director, Elissa Down, grew up with two autistic brothers and Charlie is based on one of them. Down "gets it", especially from the sibling perspective. If you want to watch a movie that paints a realistic portrait and finds a silver lining amidst all that can be ugly about autism, The Black Balloon does the trick. Here's the trailer:
Actually, I wasn't just giving up. I was avoiding something: A special movie called The Black Balloon.
The Black Balloon is an Australian movie whose cast includes Toni Collette. Collette is known for her work in many movies including The Sixth Sense, Little Miss Sunshine and the funniest chick movie I've ever seen, Muriel's Wedding. She is also one of the movie's executive producers.
The movie's brief description was enough reason for me to want to avoid it (from Wikipedia):
When Thomas and his family move to a new home and he has to start at a new school, all he wants is to fit in. When his pregnant mother has to take it easy, he is put in charge of his (severely) autistic older brother Charlie . Thomas with the help of his new girlfriend Jackie faces his biggest challenge yet. Charlie’s unusual antics take Thomas on an emotional journey that cause his pent-up frustrations about his brother to pour out.
To be blunt, when I'm on a 13-hour flight I really want a break from autism. To research Kicking and Screaming, I read plenty of wonderful stories about autism and while I learned a lot from all of them, they were rough emotional journeys. However, if I was going to stoop low enough to watch a movie starring Zac Efron (without being badgered by the kids to do so), I figured I should probably give Black Balloon a spin. As I expected, it was a very rough emotional journey.
I simultaneously liked and hated this movie. It was the first time that I'd experienced simultaneous conflicting emotions like that since reading John Elder Robison's Look Me in the Eye (where I laughed and cried at many scenes). There's something about autism that can combine humor and sorrow at the same time. Sometimes you really have to laugh at some of the most awful things. In that vein, Black Balloon has some very funny moments.
I liked and hated that it presented autism is all it's brutality. While I don't have direct experience with severe autism, I've read or heard firsthand stories similar to many of the scenes portrayed in the movie. I've also experienced most of the events firsthand but at a much lower magnitude (eg. the difference between severe and high functioning autism). This was very uncomfortable.
I liked and hated that it demonstrated the physicality of autism. We're a society that's become unaccustomed to parents being physical with their children for many good reasons. With autism, even high functioning autism, PDD-NOS or Asperger's Syndrome, being physical can be a requirement to restrain or even calm the child when he or she is having an outburst. The movie painfully demonstrates other's discomfort with the physicality. In the movie, Charlie is a big powerful teenager and he presents a physical challenge for his family as they try to manage his outbursts. Robbie is a small seven-year old and he often presents a physical challenge to us as we try to manage his outbursts. This is not a small concern for when Robbie gets bigger.
I liked and hated that it demonstrated the human capacity for some people to act like despicable f**king a**holes: rotten kids (especially teenagers); ignorant and vindictive neighbors; and judging, yet useless onlookers. I often wonder, "If I wasn't experiencing this, would I be one of them? Was I ever?"
I liked (but did not hate) that it was a realistic portrayal of autism. There were no happy miracles or major breakthroughs. I assume this is because it was made in Australia and not Hollywood. I don't think Hollywood has the discipline to make a film like this. They couldn't resist making the movie about the character of the most famous actor (Toni Collette) or having it focus on some sweeping unrealistic (or rare) turn of events. (As a tangent, the first movie where this aspect of Hollywood struck me was when I saw the Canadian film, Waking Walter: The Walter Gretzky Story. I thought, "there is no way that Hollywood could make a film about the Gretzky family and have the discipline to allow Wayne to be a bit character - far behind his father, mother, sister and his father's physical therapist." But I digress.)
I loved that the story was not about the autistic child or the parents. It was about the sibling, Thomas. I'm not shy about my belief that that I think the real people who get the shaft in the special needs world are the siblings. It's very hard on the children with the condition and it's very hard on the parents. But for siblings, it's a whole 'nother ballgame. The movie's portrayal of Thomas does justice to the fact of just how unfair a situation like this can be for a sibling. I liked that the movie allowed him to express real, yet very uncomfortable emotions. He's angry. He's embarrassed. He's crushed. He's humiliated.
I liked that it was Thomas's - and only Thomas's character to any real degree - that arced greatly in the movie (for you screenwriter wannabe's, I'm answering Richard Krevolin's question number 5 from How to Adapt Anything to a Screenplay - How do the characters change throughout the movie?). The story is basically Thomas's journey from anger to acceptance, even loving, with the help of his girlfriend, Jackie. She's the catalyst for his transformation. She's that very unique person who doesn't apparently have a tie to the special needs world but "gets it".
As a side note, if you want to read a great (yet challenging) book about siblings, I recommend Being the Other One: Growing Up with a Brother or Sister with Special Needs by Kate Strohm - also an Australian (what is it about the Aussies? They seem to really get this).
I can't recommend that everyone run to Blockbuster or Amazon or Netflix and rent/buy The Black Balloon. I found it hard to watch. In fact if it came on television and Joy was in the room, I'd change the channel. I think it would be far too difficult for her to watch.
But it's accurate. The movie's writer/director, Elissa Down, grew up with two autistic brothers and Charlie is based on one of them. Down "gets it", especially from the sibling perspective. If you want to watch a movie that paints a realistic portrait and finds a silver lining amidst all that can be ugly about autism, The Black Balloon does the trick. Here's the trailer:
Sunday, June 28, 2009
The Essay: Part Two
While the "The Bait and Switch" and "Loss" aspects of Emily Perl Kingsley's essay "Welcome to Holland" resonated with me, there is a third aspect with which I struggled.
"The Very Lovely Things About Holland"
In the following lines, a reader is left with the impression that the author has learned to accept that she is in Holland and is glad to be there:
"The Very Lovely Things About Holland"
In the following lines, a reader is left with the impression that the author has learned to accept that she is in Holland and is glad to be there:
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
To be honest, I didn't pay much attention to these lines at first. The other parts of the essay resonated so strongly with me that I never contemplated how I felt about being in Holland. I was simply glad to begin understanding what I was going through. As I began researching my memoir, I came across other comments about "Holland" and was surprised by the different perspectives. Some stated flatly that they didn't want to be there.
Is there a choice? I had never considered looking at it this way. Late last year, I had a song about Holland rattling around my head. The line that first formed was "and of all of the places that I'd rather be, I guess that it's Holland for me". On the Saturday after Thanksgiving, I sat down and wrote and recorded the second - one day (it took me a week to finish my post about it on MySpace).
I blogged about this in my only blog post on MySpace:
Parents have mixed reactions to "Welcome to Holland". For some, like me, it resonates with our own experiences. I had it sent to me at a time when I needed to hear it most. Others don't want to be in Holland and I'm not sure I blame them.
The hardest line in the song to complete was the last line. I couldn't decide whether to use "I guess that it's Holland for me" or "I'm glad that it's Holland for me" (I recorded it both ways). It's a tough call that I think goes to the heart of the reaction to the essay. To decide, I asked myself three questions:
a) Would I rather not be in this situation? Probably.
b) Do I wish that the situation was easier on everybody, especially my son? Definitely.
c) Would I change my son to accomplish a) or b)? Not a chance.
I'm crazy about my son. He's perfect in every way. This isn't something he just has; it's something that he is. It's a part of him. I can't imagine him being any different, nor would I want him to be. I'm glad just the way he is. We'll have to make the situation easier through other means.
Therefore, "glad" won.
Would I change my son? That's the ultimate question. He is who he is. I love him for whom he is, not for the expectations I unknowingly had about him before receiving the diagnosis.
But despite any appearance of magnanimity, being "glad" is not an easy call. Even after the caveats above, it's still a 51/49 decision. There are many times I'm not glad to be in Holland. Sometimes I hate it. There are times that it flat out sucks. There are times I feel like I've landed in Somalia not Holland but that's for the final post of the trilogy.
Friday, June 12, 2009
The Essay: Part One
Most parents of a special needs child are aware of Emily Perl Kingsley's 1987 essay titled "Welcome to Holland". They've often had it emailed to them from caring friends at least once. There has been at least one book written about it, Road Map to Holland by Jennifer Graf Groneberg, one song written about (if you count mine), and a few very funny parodies of it. Chapters have been written about it in books, including Schuyler's Monster by Rob Rummel-Hudson and my own. The reaction to it is hardly consistent. Yet, it continues to be an important right of passage to the newly minted special needs parent. If you've never heard of it or read, I recommend you do so (click here).
Why has this "Holland Thing" received so much attention?
The only explanation I can give is that it resonates with people. I know it did for me - or at least most of it did. It was the first thing I came across that gave legitimacy to any negative thoughts I may have had about the learning I was the parent of an autistic child. I found the bombardment of "hope" and "healing" messages at the outset of receiving Robbie's diagnosis to be preposterous. I was interested in neither at the time. Well intended comments like "at least he's not.....(some awful thing far worse than PDD-NOS)" or "you think you got it bad, I know a person who's kid is....(some other awful thing far worse than PDD-NOS)". What I needed was the acknowledgment (primarily by me) that I had experienced a loss and, more importantly, I needed to grieve that loss.
What parts connected with you the most?
There are two parts of the essay that connect with me the most: "The Bait and Switch" aspect and "The Loss".
"The Bait and Switch"
What I love about this analogy is the clear description of the disorientation caused by the experience. Most of us could imagine how we'd feel if we'd taken a long flight only to land somewhere other than our intended destination. The reaction would be that of utter disbelief. Our "trip" has been hijacked. We've been wronged. We've been violated. We're angry. We want retribution. But the hijackers got away. We don't even know who they were. There's nothing left but helpless and frustration.
She could have taken the analogy further and had the airline have you deplane in the middle of nowhere without a map as the plane flew away to its next destination but I'm sort of getting ahead of myself.
"The Loss"
"...the pain...will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss."
Before reading the essay, I understood this part of the experience, the "very significant loss", the least. I knew I was miserable and devastated by the diagnosis. I knew our lives had changed fundamentally (or at least our perceptions about our lives had changed fundamentally ). But I never realized that I was, in fact, grieving a loss. It was hard to see it as a loss when my son was there the whole time. He didn't die. He didn't even change. He was merely diagnosed. Yet, it altered everything. Putting the experience into the context of a loss helped explained the denial. I was in the first (and very long) stage of grief. Knowing this helped me move onto the next stage - unaware that it was going to be a repeating cycle of grief.
The idea that the pain "will never, ever, ever, ever go away" ran counter to all of the hope-filled, inspiring stories I'd become accustomed to hearing. I found this to be a very bold statement; one many of us needed to hear. Sometimes it needs to be said: This Sucks. It doesn't mean our children suck or we suck as parents or even that it sucks to be their parents. It does mean that this experience challenges us well beyond what we think we can handle. It does mean that we sometimes want to grab some around us by the collar and scream, "You have no idea what this is like!"
What parts didn't connect with you?
I'll save that for Part Two.
Why has this "Holland Thing" received so much attention?
The only explanation I can give is that it resonates with people. I know it did for me - or at least most of it did. It was the first thing I came across that gave legitimacy to any negative thoughts I may have had about the learning I was the parent of an autistic child. I found the bombardment of "hope" and "healing" messages at the outset of receiving Robbie's diagnosis to be preposterous. I was interested in neither at the time. Well intended comments like "at least he's not.....(some awful thing far worse than PDD-NOS)" or "you think you got it bad, I know a person who's kid is....(some other awful thing far worse than PDD-NOS)". What I needed was the acknowledgment (primarily by me) that I had experienced a loss and, more importantly, I needed to grieve that loss.
What parts connected with you the most?
There are two parts of the essay that connect with me the most: "The Bait and Switch" aspect and "The Loss".
"The Bait and Switch"
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
The whole basis for the essay is the analogy of taking a trip to Italy representing the birth a child. In the analogy, the author learns that her plane has landed in Holland instead of Italy and there's nothing she can do about it. The dreams of her long anticipated trip Italy are dead. She's not going there. It's "Welcome to Holland" instead.What I love about this analogy is the clear description of the disorientation caused by the experience. Most of us could imagine how we'd feel if we'd taken a long flight only to land somewhere other than our intended destination. The reaction would be that of utter disbelief. Our "trip" has been hijacked. We've been wronged. We've been violated. We're angry. We want retribution. But the hijackers got away. We don't even know who they were. There's nothing left but helpless and frustration.
She could have taken the analogy further and had the airline have you deplane in the middle of nowhere without a map as the plane flew away to its next destination but I'm sort of getting ahead of myself.
"The Loss"
"...the pain...will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss."
Before reading the essay, I understood this part of the experience, the "very significant loss", the least. I knew I was miserable and devastated by the diagnosis. I knew our lives had changed fundamentally (or at least our perceptions about our lives had changed fundamentally ). But I never realized that I was, in fact, grieving a loss. It was hard to see it as a loss when my son was there the whole time. He didn't die. He didn't even change. He was merely diagnosed. Yet, it altered everything. Putting the experience into the context of a loss helped explained the denial. I was in the first (and very long) stage of grief. Knowing this helped me move onto the next stage - unaware that it was going to be a repeating cycle of grief.
The idea that the pain "will never, ever, ever, ever go away" ran counter to all of the hope-filled, inspiring stories I'd become accustomed to hearing. I found this to be a very bold statement; one many of us needed to hear. Sometimes it needs to be said: This Sucks. It doesn't mean our children suck or we suck as parents or even that it sucks to be their parents. It does mean that this experience challenges us well beyond what we think we can handle. It does mean that we sometimes want to grab some around us by the collar and scream, "You have no idea what this is like!"
What parts didn't connect with you?
I'll save that for Part Two.
Saturday, May 30, 2009
The Backspace Writer's Conference: Day 2
Like fiction, memoirs are stories. The difference is that the author is under the delusion that he or she already knows the characters very well (not true), already knows what happens (also not true) and already knows how it ends (also not true). Having written both a novel and a memoir, I'd say the process for each is very similar; much similar than I ever anticipated.
Why am I writing this? Because it's relevant to the story. Although I went to the conference with the intention to understand how to best pursue publication for Kicking and Screaming, it also stirred my desire to return to writing fiction. Thrillers in particular.
As a few of you might know, I've written a novel called Slip Away, a thriller about a reluctant assassin who's hunted down by a terrorist he unknowingly created (that's called a "tag line"). Slip Away has been "in the drawer" while I focused on Kicking and Screaming. I enjoy reading many other thriller writers, such as Brad Thor, Vince Flynn, Nelson DeMille and Michael Crichton. However, the "go to" thriller writer for me has always been David Morrell.
David is best known as the creator of the character Rambo in his novel First Blood (ironically, not one of the twenty or so books of his I've read, yet). My favorites include The Brotherhood of the Rose, The League of Night and Fog and Assumed Identity. Though, I've enjoyed them all and I look forward to the release of his upcoming book, The Shimmer.
Last night, he was awarded "The Bob Kellogg Good Citizen Award" from Backspace for his "outstanding contribution to the Internet writing community." After listening to his keynote address, it's easy to see why. I know I was changed (and motivated) by the experience.
The conference was a wonderful opportunity to meet many gifted writers, especially those who write in different genres, and learn about their work. Hopefully, we'll all get the opportunity to read a fantasy by Brian Staveley, a historical fiction by Marc Graham, and a series by J.E. Taylor soon. Having read the first two pages of their novels, I know I hope I do. Given the topic of this blog, one day I hope to walk into a bookstore and see Jael McHenry's book, Simmer (you'll have to read it to understand why it's related - I didn't want to create a spoiler).
Still, I'm drawn to thrillers. Having the opportunity to meet David Morrell and briefly discuss Slip Away with him was invigorating. Meeting Backspace co-Founder and author of Freezing Point, Karen Dionne was great (if you haven't read Freezing Point yet, go to amazon.com and buy it now...really...I'll wait). I think all of us at the conference were grateful to Karen and her co-Founder, Chris Graham, for creating such a powerful community. I also enjoyed meeting Jason Pinter, the bestselling author of the Henry Parker thriller series. Add all of that up and you've got a guy ready to get his thriller published.
That doesn't mean I'm going to stop with Kicking and Screaming. In fact, on the flight home from the conference I finished editing the most recent draft and I hope to get it out for another read this week. I'm also going to continue working on my platform, as I discussed last night.
On that same flight, however, I also cut two scenes from Slip Away and reworked the final scene. I also began rethinking a new novel that's been on my mind for a while. I'll be restarting that this week. It'll be fun to start writing something new again.
Why am I writing this? Because it's relevant to the story. Although I went to the conference with the intention to understand how to best pursue publication for Kicking and Screaming, it also stirred my desire to return to writing fiction. Thrillers in particular.
As a few of you might know, I've written a novel called Slip Away, a thriller about a reluctant assassin who's hunted down by a terrorist he unknowingly created (that's called a "tag line"). Slip Away has been "in the drawer" while I focused on Kicking and Screaming. I enjoy reading many other thriller writers, such as Brad Thor, Vince Flynn, Nelson DeMille and Michael Crichton. However, the "go to" thriller writer for me has always been David Morrell.
David is best known as the creator of the character Rambo in his novel First Blood (ironically, not one of the twenty or so books of his I've read, yet). My favorites include The Brotherhood of the Rose, The League of Night and Fog and Assumed Identity. Though, I've enjoyed them all and I look forward to the release of his upcoming book, The Shimmer.
Last night, he was awarded "The Bob Kellogg Good Citizen Award" from Backspace for his "outstanding contribution to the Internet writing community." After listening to his keynote address, it's easy to see why. I know I was changed (and motivated) by the experience.
The conference was a wonderful opportunity to meet many gifted writers, especially those who write in different genres, and learn about their work. Hopefully, we'll all get the opportunity to read a fantasy by Brian Staveley, a historical fiction by Marc Graham, and a series by J.E. Taylor soon. Having read the first two pages of their novels, I know I hope I do. Given the topic of this blog, one day I hope to walk into a bookstore and see Jael McHenry's book, Simmer (you'll have to read it to understand why it's related - I didn't want to create a spoiler).
Still, I'm drawn to thrillers. Having the opportunity to meet David Morrell and briefly discuss Slip Away with him was invigorating. Meeting Backspace co-Founder and author of Freezing Point, Karen Dionne was great (if you haven't read Freezing Point yet, go to amazon.com and buy it now...really...I'll wait). I think all of us at the conference were grateful to Karen and her co-Founder, Chris Graham, for creating such a powerful community. I also enjoyed meeting Jason Pinter, the bestselling author of the Henry Parker thriller series. Add all of that up and you've got a guy ready to get his thriller published.
That doesn't mean I'm going to stop with Kicking and Screaming. In fact, on the flight home from the conference I finished editing the most recent draft and I hope to get it out for another read this week. I'm also going to continue working on my platform, as I discussed last night.
On that same flight, however, I also cut two scenes from Slip Away and reworked the final scene. I also began rethinking a new novel that's been on my mind for a while. I'll be restarting that this week. It'll be fun to start writing something new again.
Thursday, May 7, 2009
The Greeting: It Doesn't Get Better Than This
I'm gonna brag.
When I arrived home last Sunday from my week long trip to Asia, Robbie and Kelly were at a friend's birthday party (an older boy on the autism spectrum). They arrived home about an hour and a half later and it was like a scene from The Waltons.
Knowing I was home, they both burst through the door and ran up the stairs yelling "Daddy!" I met them both about half way down.
After giving them the two-kid hug, Robbie threw his arms around me, gave me a kiss and said, "I missed you so much!"
That was cool.
When I arrived home last Sunday from my week long trip to Asia, Robbie and Kelly were at a friend's birthday party (an older boy on the autism spectrum). They arrived home about an hour and a half later and it was like a scene from The Waltons.
Knowing I was home, they both burst through the door and ran up the stairs yelling "Daddy!" I met them both about half way down.
After giving them the two-kid hug, Robbie threw his arms around me, gave me a kiss and said, "I missed you so much!"
That was cool.
Monday, May 4, 2009
The Mispronunciation: Or Was it?
Remember the TV game show, The Liar's Club? The most recent version of it taped in the late 70's with Allen Ludden (of Password fame and of Mr. Betty White fame) as the host. Regular panelists included White, Larry Hovis (aka Sgt. Carter of Hogan's Heroes), Peter Marshall (of The Hollywood Squares) and David Letterman.The game included some ridiculous object that the panelists had to study and then provide goofy explanations for its purpose. The players then wagered on which panelist they thought was telling the truth.
Apparently, Robbie wants to start his own Liar's Club, in the form of a company called The Liar's Office. Truth be told, his vision isn't really all that similar to the game show. I just thought the The Liar's Club made a better introduction because I've been watching a lot of old Hogan's Heroes reruns lately.
Anyhow, here's the story of The Liar's Office:
The other day, Joy and Robbie were working in her office when Robbie came over to show her his latest drawing - a drawing of his "company". He pointed to one area of the drawing and said, "This is for my employees. They have a TV. Do employees have TVs to watch?" Apparently, he is going to be a benevolent leader of his company.
"Sometimes in the break room they do," Joy replied. "What kind of company is this?"
"This is the liar's office," he said with a big grin, proud of his latest accomplishment. Joy, on the other hand, was taken aback.
"What?" she began. "This is a liar's office?"
"Yes, liar's office," he replied undeterred. Joy was still perplexed.
"Hmmm....what kind of office is it? What do they do?" she asked. But Robbie held his ground.
"It's the liar's office."
Joy was convinced that Robbie had seen this idea somewhere, probably on the Internet, and she also knew for a seven-year old he is an amazing speller. As she racked her brain to try to figure out what he meant, it dawned on her.
"Robbie," she began. "Do you spell 'liar' L-A-W-Y-E-R?"
"Yes! That's it!" he responded with glee. "The Liar's Office!"
Joy roared with laughter and then corrected him in how to properly pronounce "lawyer" - though it's hard to say he was far off.
"I guess liar and lawyer can be the same sometimes," she added.
"Yeah," Robbie agreed. He remained unaware of the profoundness of his observation.
Not A Legal Notice: Notwithstanding the foregoing, nothing stated herein or implied in any way represents the author's opinion of the legal profession, its participants or its practices. The statements set forth above are provided for entertainment purposes only and should not be considered actionable nor are there any remedies available by law that the author is aware of but then again, he's not an attorney so his opinion should not be considered. Even this statement should not be considered binding, viable or even accurate and has not been provided by anyone who knows anything about the law, the legal profession or its participants and should be ignored in perpetuity.
Thursday, April 30, 2009
The Great Escape: Business Travel
Currently, I'm on my third international business trip of 2009. On average, I do five or six international trips per year but it's hard to predict when they will happen. Sometimes they come in bunches. Sometimes they are spread out. They usually last one or two weeks but I try to keep them to one week whenever possible.
I've been asked if it would be better for our situation if I didn't travel as much or nearly as far or if I had a more normal job. The short answer is: No.
In Fox Searchlight's hilarious movie Thank You For Smoking, tobacco lobbyist Nick Naylor (played by Aaron Eckhart) is asked how he can perform such an unethical job. His answer? "Everyone's got to pay the mortgage." My reasoning isn't as cynical as Naylor's nor do I think my job is in anyway unethical, but the logic isn't a long way from his. The job I do is what I do best. It is the best way for me to pay the mortgage. But there are also some hidden benefits that would not be available to me in a normal job.
On the downside, in my job, when I'm gone...I'm gone. I'm not in the next town over or the next county over or even the next timezone over. I'm usually a continent away. Currently, I'm in Korea and was in Singapore earlier in the week. Last month, I spent a week in China. This puts a lot of added pressure on Joy in dealing with the kids, especially Robbie. I know that she'd rather have me home at night when things are tough. I'm "escaping" the challenges while she is facing them alone. I don't like to admit this but if I'm given the choice between enduring a 13-hour flight or dealing with a sensory-induced temper tantrum, I'll take the flight any day. The flight only erodes my strength not my spirit.
In addition, I think my travel played a big role in my denial of the situation with Robbie. Since I wasn't around a lot, I didn't notice or appreciate the subtle changes that were affecting his behavior. I also didn't want to see them - which was easy to do when I was away or suffering from jet lag.
On the other hand, when I'm home...I'm home. I work from a home office. While my job can be fairly demanding on my time, including late into the night to support activities here in Asia, my office situation adds certain benefits. When I'm home, I'm available to help Joy. I can help in the mornings when things are getting rough or Robbie is experiencing a tough transition. I also get the opportunity to spend more time with the kids. For example, I go with Joy to drop the kids off at school nearly every day. It takes no more than ten minutes but I find it to be an important opportunity to be with them at a critical time. If I worked in a normal office, I'd be on the road at that time, likely sitting in traffic during my forty-five minute commute.
I'm also available for ARD meetings or other school meetings or anything required to help Robbie of any kind. If there's an issue and Joy is unavailable, I can take care of it. Since the school is less than two minutes from our house, anything required of me there represents a minor interruption to my day at most. Every once in a while, I'll even pick the kids up from school. The time is no longer than what it takes to have a cup of coffee in a normal office. I don't think I could do any of this in a normal office. Except for the most critical events, these things would require a commitment of well over an hour just in travel time to show up -- something I couldn't do very often.
At this point in my life, I think this work environment works perfectly for me. I'm fortunate that I work for a great company and have a fantastic boss who's sympathetic to our situation. It's certainly not something I abuse. I'm trading potential time at home during the evenings against the ability to be available at any time - just not when I'm 7000 miles away. I think that's a worthwhile trade.
I've been asked if it would be better for our situation if I didn't travel as much or nearly as far or if I had a more normal job. The short answer is: No.
In Fox Searchlight's hilarious movie Thank You For Smoking, tobacco lobbyist Nick Naylor (played by Aaron Eckhart) is asked how he can perform such an unethical job. His answer? "Everyone's got to pay the mortgage." My reasoning isn't as cynical as Naylor's nor do I think my job is in anyway unethical, but the logic isn't a long way from his. The job I do is what I do best. It is the best way for me to pay the mortgage. But there are also some hidden benefits that would not be available to me in a normal job.
On the downside, in my job, when I'm gone...I'm gone. I'm not in the next town over or the next county over or even the next timezone over. I'm usually a continent away. Currently, I'm in Korea and was in Singapore earlier in the week. Last month, I spent a week in China. This puts a lot of added pressure on Joy in dealing with the kids, especially Robbie. I know that she'd rather have me home at night when things are tough. I'm "escaping" the challenges while she is facing them alone. I don't like to admit this but if I'm given the choice between enduring a 13-hour flight or dealing with a sensory-induced temper tantrum, I'll take the flight any day. The flight only erodes my strength not my spirit.
In addition, I think my travel played a big role in my denial of the situation with Robbie. Since I wasn't around a lot, I didn't notice or appreciate the subtle changes that were affecting his behavior. I also didn't want to see them - which was easy to do when I was away or suffering from jet lag.
On the other hand, when I'm home...I'm home. I work from a home office. While my job can be fairly demanding on my time, including late into the night to support activities here in Asia, my office situation adds certain benefits. When I'm home, I'm available to help Joy. I can help in the mornings when things are getting rough or Robbie is experiencing a tough transition. I also get the opportunity to spend more time with the kids. For example, I go with Joy to drop the kids off at school nearly every day. It takes no more than ten minutes but I find it to be an important opportunity to be with them at a critical time. If I worked in a normal office, I'd be on the road at that time, likely sitting in traffic during my forty-five minute commute.
I'm also available for ARD meetings or other school meetings or anything required to help Robbie of any kind. If there's an issue and Joy is unavailable, I can take care of it. Since the school is less than two minutes from our house, anything required of me there represents a minor interruption to my day at most. Every once in a while, I'll even pick the kids up from school. The time is no longer than what it takes to have a cup of coffee in a normal office. I don't think I could do any of this in a normal office. Except for the most critical events, these things would require a commitment of well over an hour just in travel time to show up -- something I couldn't do very often.
At this point in my life, I think this work environment works perfectly for me. I'm fortunate that I work for a great company and have a fantastic boss who's sympathetic to our situation. It's certainly not something I abuse. I'm trading potential time at home during the evenings against the ability to be available at any time - just not when I'm 7000 miles away. I think that's a worthwhile trade.
Thursday, April 23, 2009
The Look: Is There One?
I enjoyed this blog post by John Elder Robison on the Psychology Today website about the look of autism. Many of life's transforming events make us attuned to new realities, such as the newlywed who notices couples everywhere or the new parents who begins to see babies everywhere. The same can happen to the parents of a newly diagnosed child: We begin to see autism everywhere.
It's probably not a good idea to sit around and trying to diagnose people on the street but sometimes we can't help noticing things that make us wonder. Fortunately, John's article gives credibility to the idea. I don't have the confidence he may have in identifying people on the spectrum but his article makes me feel a little bit less crazy about the topic.
I especially enjoy that he discusses the idea of autistic children being beautiful. I'd heard this discussed before, at the Autism & Asperger's Conference at Southfork Ranch in 2008. At first, this sounded like typical parent-bragging but I've started to wonder about it. As Robison's mentions:
Judy Miles, a geneticist, said something fascinating to me. "In the 1940s, Kanner wrote about beautiful children with autism." Later readers have taken that as a metaphor, but what if he meant it literally? As she says, there are some kids with profound autism who are also have beautifully sculpted faces. Could there be a connection?
Click here to read the rest.
If you haven't read John's book Look Me in the Eye: My Life With Asperger's, go buy it. It's a great read and surprisingly funny.
It's probably not a good idea to sit around and trying to diagnose people on the street but sometimes we can't help noticing things that make us wonder. Fortunately, John's article gives credibility to the idea. I don't have the confidence he may have in identifying people on the spectrum but his article makes me feel a little bit less crazy about the topic.
I especially enjoy that he discusses the idea of autistic children being beautiful. I'd heard this discussed before, at the Autism & Asperger's Conference at Southfork Ranch in 2008. At first, this sounded like typical parent-bragging but I've started to wonder about it. As Robison's mentions:
Judy Miles, a geneticist, said something fascinating to me. "In the 1940s, Kanner wrote about beautiful children with autism." Later readers have taken that as a metaphor, but what if he meant it literally? As she says, there are some kids with profound autism who are also have beautifully sculpted faces. Could there be a connection?
Click here to read the rest.
If you haven't read John's book Look Me in the Eye: My Life With Asperger's, go buy it. It's a great read and surprisingly funny.
Wednesday, April 15, 2009
The Numbers: What do they mean?
We love numbers. We're a society of statistics. We use statistics for a variety of reasons. The autism community is no different. We love statistics, too. Many of us can recite some of the numbers about autism off the top of our heads. For example, autism will affect:
1 in 150 children
1 in 94 boys
What some might not know is that according to a study by Cambridge University released last month, those ratios in Britain are:
1 in 60 children
1 in 38 boys
Without debating the specifics of the numbers, what these mean to me is that there is a very good chance everybody knows at least one family dealing with autism -- even if they don't realize it. That's why I like the idea of "Autism Understanding" month.
One figure that seems to get a lot of attention in the autism community (and the special needs community in general) is the divorce rate. According to Autism Speaks, the divorce rate is around 80% for parents of autistic children. I've heard 75%. I've heard 85%. Whatever the number, it appears to be high.
According to a study released by the Easter Seals in December 2008, however, the rate of divorce for parents of autistic children is actually less than the rate for parents without special needs children (30% vs. 39%). Ignoring the fact that our only interface with Easter Seals nearly led Joy to violence, their study is about as convincing as the Autism Speaks number.
Whether it's 30% or 80%, frankly, I'm starting to find the number to be meaningless because underlying the discussion of divorce is the level of stress autism puts on a marriage. While many of us like to put a happy face on our situation, what goes on behind the curtain is often harder than we lead on.
That same study released by the Easter Seals revealed many statistics about parents of autism that some of us dealing with it deemed as obvious at best or useless at worst. I know I laughed when I first read it but when I looked at the study through the prism of someone who doesn't know much about autism (which is what we're asking of them during "Autism Understanding" month -- see things through our prism), I realize some of this information might not be all that obvious.
Here are a few of the statistics from the Easter Seals study I found interesting (my concerns are in bold):
The percentage of parents of children living with autism who feel their children will be able to:
Some will interpret this discussion as whining or a search for self pity. The very first time I mentioned something like this, I was met with both of those reactions. Others will want me to hurry up and get to the happy part of the story. I can only point to the discussion and say, "that's the way it is". All marriages are hard. Marriages with children are harder. Autism (and special needs in general) adds several other layers of stress to a marriage. This is going on whether or not the divorce rate is 80% among us or 30%.
Is that whining? I don't know. I'll let you be the judge. I can tell you that many parents of autistic children want you to know about it but few want to say it out loud. To my knowledge, I've never shared this type of information in a conversation. It's much easier to do in a blog, an email or even a book. Discussing it live does sound whiny.
I recall the advice of former Notre Dame Football Head Coach, Lou Holtz: "Don't tell your problems to people: eighty percent don't care; and the other 20% are glad you have them." There's probably an element of truth to that. If you've read this far, you're probably a parent of 1 of the 150 children diagnosed with autism and you have the same problems. If you're not, you must be a pretty special person -- someone we say "gets it". But that's a discussion for another day.
1 in 150 children
1 in 94 boys
What some might not know is that according to a study by Cambridge University released last month, those ratios in Britain are:
1 in 60 children
1 in 38 boys
Without debating the specifics of the numbers, what these mean to me is that there is a very good chance everybody knows at least one family dealing with autism -- even if they don't realize it. That's why I like the idea of "Autism Understanding" month.
One figure that seems to get a lot of attention in the autism community (and the special needs community in general) is the divorce rate. According to Autism Speaks, the divorce rate is around 80% for parents of autistic children. I've heard 75%. I've heard 85%. Whatever the number, it appears to be high.
According to a study released by the Easter Seals in December 2008, however, the rate of divorce for parents of autistic children is actually less than the rate for parents without special needs children (30% vs. 39%). Ignoring the fact that our only interface with Easter Seals nearly led Joy to violence, their study is about as convincing as the Autism Speaks number.
Whether it's 30% or 80%, frankly, I'm starting to find the number to be meaningless because underlying the discussion of divorce is the level of stress autism puts on a marriage. While many of us like to put a happy face on our situation, what goes on behind the curtain is often harder than we lead on.
That same study released by the Easter Seals revealed many statistics about parents of autism that some of us dealing with it deemed as obvious at best or useless at worst. I know I laughed when I first read it but when I looked at the study through the prism of someone who doesn't know much about autism (which is what we're asking of them during "Autism Understanding" month -- see things through our prism), I realize some of this information might not be all that obvious.
Here are a few of the statistics from the Easter Seals study I found interesting (my concerns are in bold):
The percentage of parents of children living with autism who feel their children will be able to:
- Make his or her own life decisions (14% compared to 65% of parents with typically developing children)
- Have friends in the community (17% compared to 57% of typical parents)
- Have a spouse or life partner (9% compared to 51% of typical parents)
- Be valued by their community (18% compared to 50% of typical parents)
- Participate in recreational activities (20% compared to 50% of typical parents)
- Seventy-four percent of parents of children with autism fear their children will not have enough financial support after they (the parents) die, while only 18% of typical parents share this fear.
They also express extreme financial strains and costs associated with caring for a child with autism, with more than half stating that the cost of caring for my child: - Drains my family’s current financial resources (52% compared to 13% of typical parents)
- Will drain my family’s future finances (50% compared to 10% of typical parents)
- Will cause me to fall short of cash during retirement (54% compared to 13% of typical parents)
- 76% of parents of children with autism are concerned about their child’s future employment, when only 35% of typical parents share this fear.
Some will interpret this discussion as whining or a search for self pity. The very first time I mentioned something like this, I was met with both of those reactions. Others will want me to hurry up and get to the happy part of the story. I can only point to the discussion and say, "that's the way it is". All marriages are hard. Marriages with children are harder. Autism (and special needs in general) adds several other layers of stress to a marriage. This is going on whether or not the divorce rate is 80% among us or 30%.
Is that whining? I don't know. I'll let you be the judge. I can tell you that many parents of autistic children want you to know about it but few want to say it out loud. To my knowledge, I've never shared this type of information in a conversation. It's much easier to do in a blog, an email or even a book. Discussing it live does sound whiny.
I recall the advice of former Notre Dame Football Head Coach, Lou Holtz: "Don't tell your problems to people: eighty percent don't care; and the other 20% are glad you have them." There's probably an element of truth to that. If you've read this far, you're probably a parent of 1 of the 150 children diagnosed with autism and you have the same problems. If you're not, you must be a pretty special person -- someone we say "gets it". But that's a discussion for another day.
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.
Here's the link to the initial post (Joy smartly recommended that I write several posts before launching). I hope you enjoy it.
Tuesday, March 3, 2009
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.
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.
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