Thursday, December 31, 2009
A New Year
My favorite comment about the new year was on Twitter a few days ago: "I just checked my 2009 New Year's resolutions and I've got 54 hours to lose 13 pounds and write a novel." (my apologies to the author, I can't find the tweet to link).
For me, 2009 began against a bleak backdrop. Beyond the pay cuts, the market crash and the uncertain economic future, other things weighed on my mind. I fully expected to lose a parent in 2009 - so much so that I bought a suit for a funeral and after a promising start, Robbie's situation at school was deteriorating. I did not look forward to the New Year with a lot of hope.
Fortunately, things changed. After a lot of prayer and persistence by my brother and sister-in-law, combined with the healing properties of the almighty banana (it's a long story), both of my parents are still with us. In fact, I'm not sure I've seen them both stronger in years. To say I was grateful for this would be an enormous understatement. It's been a wonderful gift for all of us, especially Kelly and Robbie.
I've documented the changes in Robbie here in this blog and as challenging as the business climate was in 2009, the predicted economic catastrophe of biblical proportions never materialized (though I know it was very tough on many).
Through the power of social media outlets, such as Facebook and Twitter, 2009 brought back connections with people I'd not encountered in years. I can't count how many times I thought, "I haven't talked to this person in over twenty-five years" when adding a new Facebook friend. In some ways, I know many of these people better now than I ever did. In addition, I've made "friends" with people I've never met - or, at least, before I met them. At this year's Backspace Conference as well as a few Notre Dame Football games, I had the chance to meet many of these imaginary friends. Crazy thing this Internet.
If I was sum up the year in a word, it would be "turnaround".
A year in numbers (yes I keep track of this stuff):
Words written: 72,500 (49,000 book-related; 23,500 blog-related)
Books completed: 1* (another draft is likely necessary but it's readable)
Books read: 52 (presidential biographies, special needs memoirs, & thrillers top the list)
President Biographies Remaining: 1 (I've read a bio of every president except Jimmy Carter)
Songs written: 3 (one I actually like)
Overseas Trips: 7 (ties a record)
Days out of the Country: 59 (a record)
New States Visited: 1 (Alaska; four more to go)
A New Decade
Without the drumbeats of Armageddon upon us, like with Y2K, the arrival of a new decade has snuck up on us. I've barely given the idea any thought, whereas 2000 was anticipated long before Prince wanted to party like it's 1999.
While the 90's were a period of unimaginable personal and professional growth for me, the 00's were a period of unimaginable personal and professional adversity. The first half of the decade was marked by professional challenges I could have never fathomed. The second half was marked by one big challenge I never foresaw but consumed me like no other.
In a way, the end of the 00's, especially 2009, saw me fully emerge from my bunker. Like Punxsutawney Phil does on occasion, I popped out and didn't see my shadow. Instead of crawling back into the bunker, I hung around. The result has been an early spring. I can live with that.
What will tomorrow, or January, or 2010 or the 10's bring? I don't know. I'm anticipating the "turnaround" to become a "breakthrough" on several fronts. I'm not going to bore you with the details of those fronts in any New Year's Resolutions.
Let's just go live and find out.
Happy New Year, everybody. And thank you - for reading this far.
Saturday, December 26, 2009
Armed with a shredder, I quickly cut the piles down to size - or at least to a manageable level. At the bottom of one of the piles, I came across a list I'd made on a piece of paper from a legal pad that surprised me. The list was titled:
BEHAVIORS I'D LIKE TO SEE CHANGE
I created the list last February, when we were at the height of our concerns about Robbie in school. I wish I could remember what inspired me to write the list. Was it a book I'd read? Was it a conversation I'd had? More importantly, why did I misplace it?
All in all, I listed nineteen items off the top of my head that I wanted Robbie to be able to change. After finding the list, I judged whether he's learned to change these behaviors at least 80% of the time (hell, I don't do all of the 100% of the time). I was shocked to determine that he'd changed all but five of the items. The five items I was unable to check off were among the five least worrisome behaviors he exhibited. They are:
- Play a board game without cheating or on his own terms
- Eat more foods, especially fruits and vegetables
- Improve his writing<
- Eat breakfast
- Sleep in his own room through the night
If I were to create another list, I'm sure I could find more than five behaviors I'd like to change. But knowing that those fourteen items will no longer be on it, will make it a much more enjoyable task than it was last February.
Thursday, December 10, 2009
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.
Wednesday, November 11, 2009
Check it out.
Tuesday, October 27, 2009
What is the point of this blog or my story?
My long, reluctant journey into the world of autism began approximately four years ago. The first two years were marred by ignorance and denial, as well as a lot of pain and frustration. The next year and a half began the transformation of acceptance, largely by reading memoirs written by other special needs parents and writing one of my own. The process of writing the memoir was very therapeutic. I was able to articulate my own thoughts and feelings about the experience and support them with the advice and experience of others. For the last six months, I've been sharing my story on this blog.
I began the writing the memoir out of the frustration of just how much the experience sucked. I wanted others to know just how hard it was and, more importantly, point out to new fathers to the club that they are not as alone as I felt during those two miserable years.
The writing occurred in two major chunks. The first chunk was written during the summer of 2008. The second chunk was written from November through December of the same year - after a best selling author told me it was too short (way too short). The first chunk represented my story as I spat it onto the pages. It represented what pissed me off about the "process" and what I thought others should know. The second chunk represented others' interpretations of the same or similar events with some reflection added in. It's half emotion/half substantiation.
Part of what drove me to finish the book was my certainty that there was a need for a book like this from the father's perspective. Now, I'm not so sure. When I look at the memoirs by fathers on the bookshelves, I see some truly heartbreaking and/or inspirational tales.
James Reston Jr.'s Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey is a heart-wrenching tale. I had no idea while I was reading the book that Reston had been a central figure in the Nixon/Frost story. Even if I had, it would have seemed insignificant compared to his experience with his daughter, Hillary. Rob Rummel-Hudson's memoir, Schuyler's Monster: A Father's Journey With His Wordless Daughter, revealed a story with which I identified in many ways. The steps he took were very reminiscent to my own. The size of the footprints he left were not. At times, I find myself wondering if I could have handled what Rob faced and continues to face. Roy Richard Grinker's Unstrange Minds: Remapping the World of Autism was just so damn well researched that it was hard not to want to quote it on every page.
One book that I haven't read, but should, is Rupert Isaacson's The Horse Boy: A Father's Quest to Heal His Son. There are a few reasons I haven't read it. The biggest reason is that when it was released I had already read over ten memoirs about special needs and autism in a short period of time. I'd also just spent the previous nine months writing my own memoir. I was all filled up with autism and special needs. I couldn't take any more. I needed a break.
The second, and possibly more insidious reason, was that it was competition. I'd never looked at these memoirs in that way but an agent set me straight. After hearing the first two pages of Kicking and Screaming and complimenting the writing (which I enjoyed), she threw cold water on the assumptions I had held dear for over a year. It didn't matter that I was writing from a father's perspective. "Unless you're going to take your son to Mongolia and put him on a horse (referring to Rupert's story), you're going to have a hard time selling it without a platform," she said. I spoke with a few other agents and their take was the same.
Both Rob and Rupert will be hosting a panel at this weekend's Texas Book Festival being held this weekend in Austin, TX. If I wasn't going to the Notre Dame/Washington State football game in San Antonio, I'd be attending the event. I'd like to hear more about Rupert's story despite having not read his book.
A lot has changed since I banged out those first few words of Kicking and Screaming. I'm in a much better place about the situation. I've achieved a level of acceptance I found unimaginable a few years ago. I know another ride on "the cycle of grief" might be just around the corner but I'm an experienced passenger. I know how the ride ends. I'm just glad I don't have to ride it as often as I used to. Also, as I've noted several times recently, Robbie is in a great place. He's achieved a level of speech, self-regulation and social skill that I found unimaginable a few years ago. I'm awed by the progress he's made in such a short period of time. These two realities have taken some of the passion out of my quest. Autism World is home and it's become a pretty nice place. Not a perfect place. But a nicer place than it was not too long ago. It's hard to climb atop the soap box and exclaim, "it's okay!"
The point of this blog hasn't changed. I still want to inform people about Autism World and give those who already know the opportunity to relive some shared experiences. I'd like to provide a better forum for fathers to share their experiences but there are just so many hours in the day. As for getting a book published, I'm not too sure. The competition is stiff. Their stories are compelling. The road of platform creation, self-promotion and publication is not for the feint at heart. These parents are fueled by an endless well of passion that I lack at the moment.
I'm okay with that. Trust me.
Monday, October 12, 2009
My first reaction was pretty ambivalent. The incident rate in our family was 1 in 2. No study is going to change that. I'm not surprised that the number is higher than previously published but it didn't stir much in me. Many reacted differently than I did. Kent Potter of AutismSpot commented:
Am I speechless? Am I surprised? Am I at a loss for words? Am I dumbfounded beyond belief? Are you nuts? Of course I am not surprised, nor bewildered, and I am definitely not speechless. You don't have to be part of the Autism Community for long before you realize that the "official" numbers have been inaccurate for a long time. Ask most of us and you will likely hear that the numbers still are only a snap shot (or reference point) that is going to be updated again and the results even more "startling" to the general public.
Later in his blog post, Kent ventured into the area that's bothering me the most:
There is tremendous danger in spreading false or inaccurate "cures" or "fixes" when it comes to the world of Autism. I can't begin to tell you the number of times I have been told, "I had a friend, who had a sister who did ______(fill in the blank with anything you want...diet, pill, drops, therapy) and it cured their child of Autism. You should try it with Sam." Thank you, these are well intentioned offerings of insight and hope and I understand you are trying to help. This typically will lend me the opportunity to correct the confusion and help the kind person understand that the world of Autism is not a one size fits all. (my emphasis added).
I suppose that's the root of my ambivalence. The breadth of the autism spectrum is so broad that an incident rate feels meaningless to me. The challenges for those with severe forms of autism versus those with higher functioning autism or Asperger's Syndrome are so different that I'm beginning to wonder why they're even mentioned in the same sentence. The differences are a constant source of strife within the autism community that seems to grow every day.
As I was wondering how to approach the new statistic, John Elder Robison published an article on Psychology Today called "The 'Cure' for Autism, and the Fight for It". It articulated my concerns better than I could. John is probably one of the best known people on the spectrum today, so I take his opinions quite serious. From the Psychology Today article:
"Autism is the one medical condition I can think of where no one can agree on the legitimacy of any of its so-called advocacy groups....Autism's impact on people varies tremendously. Some people are totally disabled which others are merely eccentric. It's no surprise that the individuals at the two extremes would have totally opposite views of their condition.
The "High Functioning" (HF) autistic group says, "We don't need to be cured. We just need tolerance and understanding."
The "Highly Impaired" (HI) group says, "Enough with the understanding! We need some cures, fast!"
Parents of affected kids say, "I want my kid to have a good life, whatever that means or takes."
To a large extent, those points of view are mutually exclusive. HF people tend to see the HI desire for a cure as an indictment of their very being. "Get rid of autistic disability" morphs into "get rid of people like me," in their minds. From the HI perspective, the desire for tolerance and the HF statement that, "we are fine the way we are," seems to be a callous dismissal of their (HI) very real disabilities." (my emphasis added).I encourage you to read all of John's article because it's excellent.
No wonder there's so much infighting in Autism World. We're fighting two completely different battles (at least). For some autism activists, though, it's a zero sum game. They only see their battle. They only win if others lose. If that means trying to discredit someone fighting a different battle, so be it.
1 in 100? 1 what in 100? I think we're quickly moving past the need for autism awareness. People are aware. What most people aren't is informed. Who can blame them? There's so much contradictory, vague and false information floating out there that I have a hard time considering myself as informed. Unfortunately, people residing in Autism World are part of the problem rather than the solution in this regard. If we can't recognize or respect the differing opinions within the community, how can we expect those outside of the community to do it?
Sunday, October 4, 2009
Last year when things were going poorly, Robbie changed classrooms. He'd had problems going to school and when he arrived he failed to do any work. To address some of his issues, his new teacher implemented a scorecard to track his work completed during the day. There were five categories. If he completed at least four, he earned a sticker. When he'd accumulated five stickers, he earned either free computer time, free choice time or no morning work. Joy and I also added the stipulation that if he failed to get four "smiley faces" (that indicated he'd completed the work), he couldn't use the computer when he got home.
For the most part, he earned at least four "smiley faces" but there were a few two and three "smiley face" days. He also earned all five on many occasions.
Joy and I decided to copy this approach at home with his morning preparation. His morning scorecard included five categories as well. The categories were: wake up , brush his teeth, get dressed, get in the car and get out of the car at school nicely. If he failed to get four "smiley faces" for his morning preparation, he wasn't allowed to use the computer when he got home from school. Like in school, he almost always earned at least four "smiley faces" for his morning preparation. Five was very common. However, there were still a few days when he'd lost computer time because he didn't wake up and go to school nicely.
These two scorecards were very effective tools. Towards the end of the year, if he failed to get four "smiley faces" he wouldn't even bother telling us when he got home. Instead, he just went straight to him room.
This year? Both scorecards have disappeared. They're obsolete. He goes to school nicely in the morning without hesitation. He does all of his work at school without a problem. He even does homework, which we assumed was going to be the monumental battle of second grade. If we were keeping score, he would have earned five "smiley faces" for both scorecards every single day of the school year.
It's as if a light switch was turned on. This wasn't a gradual change. It literally happened overnight. Roughly twelve hours before the bell sounded for the first day of school, Robbie had one of his biggest and longest tantrums we've seen in a while because he didn't want the teacher he'd been assigned. A call from one of his classmates saying how happy he was that Robbie was going to be in his class flipped the switch. Since then, school just hasn't been a problem. To say we're overjoyed would be a significant understatement.
In September, I posited that the changes could be attributed to Joy's efforts on teaching him the cause and effect of his behavior at school and summer school, a change of medicine, or the quality of his new teacher. It's like a combination of all three.
A few weeks ago, someone stated, "I think Robbie's outgrown this Asperger's (Autism) thing". As much as I want to believe that, I know it's not true. A few years ago, I might have let myself fall into that trap. Now, I realize I can't afford to. There are still plenty of signs to debunk that claim. Nonetheless, we appear to have crossed a very big chasm. What that means is we can now drill down and focus on other areas, especially the area of social skills, that will make or break Robbie's success as an adult in society.
I'm not going to lie, though. I think those chances have tripled over the last month. That might be a trap, too. But it's one I'm willing to walk into.
Tuesday, September 22, 2009
My favorite contributor is a young man by the name of James Williams. According to his AutismSpot biography, "James is a successful, 21 year old college student studying to become a Special Education Teacher. James shares his experiences and perspective as a young adult living with Asperger's Syndrome."
Since James is 21, he's old enough to understand the subtle implications of his Asperger's Syndrome but young enough to remember what it was like to be a child with Asperger's (even though he was diagnosed when he was eleven). For me, he's the voice of Robbie thirteen years from now telling me, "This is what you should do!"
His most recent contribution is titled, "Being Different". He cuts through to the very heart of the primary issue I've had with Robbie's autism; accepting the fact that his is different. It's not because of how I feel about him but because I'm terrified about what it's like for a kid to be different.
Unfortunately, AutismSpot doesn't provide the ability to embed videos. Here's the link to James's video.
James opens the discussion by reminding us that "kids are cruel". They are. That's just part of life. We've all been through it and, whether we want to admit it or not, we were likely a victim or a perpetrator at sometime during our childhood. For kids in elementary school and junior high school, it's hard to be different. We know this as adults. We have pretty good memories.
He tells about how hard it was to be different and how taunts such as "loser" had an impact on him. Since he could tell he was different, he started to believe them. It wasn't until he received his diagnosis that he could identify why he was different and began to be freed from some of the negative aspects of it. It was in junior high school that he learned, "By telling people, I was actually improving things." When the other kids understood there was a reason for his being different, they became much more accepting. In fact, some even began to help him. Not only were the other kids more accepting, James feels that most children who have been diagnosed with autism can accept who they are.
Unfortunately, kids aren't the biggest problem. Recalling what we were all like in junior high school, I find this hard to believe but James is quite blunt about where the biggest issues lie.
"One of the biggest problems I see is that parents have a hard time accepting that their child is different."
And there it is.
I winced the first time I heard him say it. I'm guilty as charged. I've been that guy and, to a degree, I still am. A child who has high functioning autism or Asperger's Syndrome gives very few physical clues as to their condition. They look just like any other kid. When I first heard the diagnosis, I was adamant that this was not a label I was going to hang around my child's neck. Why should I do that to this beautiful child? I thought it was the cruelest thing I could do ('cruel to whom?' I wonder now). But James's message is clear, "Don't be afraid to talk about autism. Don't be afraid to tell people that your son or daughter has it."
This might sound simple enough and even obvious. But for even a guy who blogs about autism and has written a memoir about autism, I still hate telling people about it for the first time. I really do. If I ever get the book published, you'll read that it took me nearly two years to tell someone about it for the first time and it was a person I'd previous only spoken with once the past twenty years. I selected this person because he had two children on the spectrum and I wanted to hear from someone who knew what I was going through.
That's a long time to be silent about the most important thing that's going on in your life.
I find it's much worse in a conversation than in writing via Facebook or something. In a conversation, I need to develop a whole lot of courage first and then I just blurt it out. After that, it's hard to shut up because I've balled it up for so long.
Joy and I were counseled about sharing his diagnosis by Robbie's grade school counselors. They recommended that we explain the situation to his classmates. Their evidence showed that when kids learned about the situation (even as young as kindergarten) they were much more accepting. They've even seen cases where bullies would protect rather than target kids with autism, if they know what was going on. I hated the idea of telling the kids with a passion but I went along with their advice - and it was excellent advice. Fortunately, one of the counselors has been kind enough to do the communicating to the classes. His classmates over the years have been nothing but helpful and accepting of Robbie, even during some of his meltdowns. I'm always touched by the kindness they show him.
I don't know now if this is unique for fathers or if there is some other reason I reacted this way. It's clear I'm not the only one. Like the title says, I went into Autism World "Kicking and Screaming". Now that I'm there, I still have the urge to throw the occasional kick here or there once in awhile.
Wednesday, September 9, 2009
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.
Tuesday, August 11, 2009
Fearing, well, everything about flying with the kids, we usually drive 1400 mile trek. We've flown a couple times in the past with mixed results, including a full-blown temper tantrum at Toronto's Pearson International Airport that I won't soon forget. Most people think we're nuts to drive it but the constant low level anxiety of knowing that he could become overwhelmed at any moment was a powerful source of motivation. There's a lot to be said to have full control over your mode for transportation.
Since Robbie brought up the idea of flying, I figured I'd empty what was left in my frequent flyer account and give it a shot. It's a statement of his progress over the past few years and our confidence in being able to manage whatever might arise. Given the successes we've had this summer, I'd say it's a pretty good bet.
I'll let Bruce Springsteen narrate our destination:
Who knows, maybe we'll take another cruise on the canal this year.
Wednesday, July 29, 2009
That's too long. Way too long.
Parents, especially parents of special needs kids, need time away alone together. To quote the University of Notre Dame's President Emeritus, Rev. Theodore Hesburgh, "the most important thing a father can do for his children is to love their mother." Not give them toys. Or take them to McDonalds. Love their mother.
The intensity of dealing with special needs (or even children in general) focuses so much attention on the child that other relationships suffer. It almost has to. There's only so much attention available in a day and a special needs child takes up a lot of it. That's just the way it is. I mentioned the importance of addressing the needs of the siblings in the review of The Black Balloon below (because I think those needs are widely overlooked). It's also important, if not more important, to address the needs of the marriage. The marriage has to be the priority, even ahead of the children.
We need a break. We have to get away from it all. Vacations, dates, and even long lunches alone are all necessary. Joy and I are fortunate that I was able to amass enough frequent-flyer miles and hotel points to nearly cover the entire cost of the trip. If not for that, we would still have to do something; even stay someplace ten minutes from our house.
The "where" is rarely the problem. It's the "how" and "who"? How can we leave our children for so long? Who will take care of them when we're away? These questions can easily derail any attempt to get away. I know. It's been five years. My advice is make answering them a top priority, even if it only means a day or two away. It's an important investment - one too valuable not to make.
(NOTE: I've turned off the comment control for now. Apparently, Google doesn't much care for posts without comments so feel free to let them fly, especially on any past posts - wink, wink, nudge, nudge)
Tuesday, July 21, 2009
Why can't we all get along? The many faces of autism. Why do we fight?
Just this morning I was reading a post on Autism's Gadfly, and it made me think about the tremendously different wants and needs of people at various points on the autism spectrum.
His motto is, We don't want no stinkin neurodiversity! We need a cure.
In my writing, I have said, I don't need a cure; I just want compassion and understanding.
Those statements seem pretty opposite to me. Yet we are both adults with autism. How can our views be so different? That is the essence of the problem. We have the same diagnosis, but we are impacted very differently. (Click here to read the rest).
Saturday, July 18, 2009
Mothers of children with autism have higher parental stress, psychological distress
Researchers at the University of Washington's Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children's problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism. (Click here to read the UW press release). My post's title refers to the press release's headline more than the study. It was an unfortunate choice of words. Many picked up on the obviousness of the statement, including the New York Times. It shouldn't be news that mothers of children with autism have more stress than mothers of children who are neurotypical (though, I am sure there are cases where that is absolutely not true). I think it's safe to say, however, that the degree of increase of stress is not widely known. Another comment I've read in regard to the study has been, "What about fathers' stress?" Again, the release's shortcomings come into play. They probably should have at least addressed the topic. And, again, the New York Times picked up on it. They asked Annette Estes, the director of UW's Autism Center directly about the absence of any mention about fathers. According to Ms. Estes: "We did try to study dads. When we started this study, the dads were not as likely to fill out the questionnaires. (And in other news, the sky is blue). Ms. Estes went to say that although they didn't have enough of sample from the fathers; the dads were "really similar to the moms". This absence of a sample from fathers is at the core of why I wrote Kicking and Screaming. Fathers don't like to talk about autism. I know I didn't - at least, not until I could discuss it with someone who "got it" (e.g. a fellow member of the club). Frankly, I still don't. Don't let the blog and the book fool you. As a friend once commented, "I bet this is an easier topic to read and write than to say and hear". This silence should be fertile ground for researchers like UW's Autism Center and others - if they could get any fathers to participate. The key observation of the UW study was that the behavior problems associated with autism were the cause of increase of parental-related stress in mothers of autistic children than mothers of children with development delays. As a result, the researchers now believe that when choosing early intervention programs, those that address behavior problems should be a priority. Bingo. I agree completely. Joy and I and several other parents we know have come to the same conclusion. We all wish we had addressed the social skills much earlier in the process. Another conclusion of the study, one that the researchers found counterintuitive, is that no link was found "between a child's decreased daily living skills (such as dressing or toilet training) and increased parental stress and psychological stress". I agree. I find that counterintuitive as well. I imagine there might be a difference between what is "hard" and what is "stressful". With behavior problems, fear is always lurking around just below the surface. A telephone call during the school day is a source of trepidation. Interactions with other children can be a roll of the dice. A simple request like, "let's go out to eat", will very likely be met with a tantrum. If you enter your child into a situation that you're not sure he or she can handle, you're on guard for that outburst to occur. You know if it does, everyone around you will be focused on you and your child and, as most of us know, they are usually not sympathetic eyes. Just judging ones. This doesn't even take into account the number of situations you avoid with the child because you are certain they cannot handle it. I have one concern about the study. I'm not a fan of "Who Has it Harder?" contests. As hard as I think our situation with Robbie has been, I get no comfort from knowing "at least he's not (some awful thing worse than high functioning autism)". The hardest challenge any parent faces is their hardest challenge. I doubt any parent engaged in a parental struggle feels better by the knowledge, "at least our child's not autistic". Nonetheless, the lack of knowledge and understanding about autism creates a strong case for the need to educate the public about the issues and challenges everyone dealing with it has to face. It just doesn't have to occur at the expense of anyone else. UW's study is an interesting one that probably created as many questions as it answered. Welcome to Autism World.
Researchers at the University of Washington's Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children's problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism. (Click here to read the UW press release).
My post's title refers to the press release's headline more than the study. It was an unfortunate choice of words. Many picked up on the obviousness of the statement, including the New York Times. It shouldn't be news that mothers of children with autism have more stress than mothers of children who are neurotypical (though, I am sure there are cases where that is absolutely not true). I think it's safe to say, however, that the degree of increase of stress is not widely known.
Another comment I've read in regard to the study has been, "What about fathers' stress?" Again, the release's shortcomings come into play. They probably should have at least addressed the topic. And, again, the New York Times picked up on it. They asked Annette Estes, the director of UW's Autism Center directly about the absence of any mention about fathers. According to Ms. Estes:
"We did try to study dads. When we started this study, the dads were not as likely to fill out the questionnaires. (And in other news, the sky is blue).
Ms. Estes went to say that although they didn't have enough of sample from the fathers; the dads were "really similar to the moms".
This absence of a sample from fathers is at the core of why I wrote Kicking and Screaming. Fathers don't like to talk about autism. I know I didn't - at least, not until I could discuss it with someone who "got it" (e.g. a fellow member of the club). Frankly, I still don't. Don't let the blog and the book fool you. As a friend once commented, "I bet this is an easier topic to read and write than to say and hear". This silence should be fertile ground for researchers like UW's Autism Center and others - if they could get any fathers to participate.
The key observation of the UW study was that the behavior problems associated with autism were the cause of increase of parental-related stress in mothers of autistic children than mothers of children with development delays. As a result, the researchers now believe that when choosing early intervention programs, those that address behavior problems should be a priority.
Bingo. I agree completely. Joy and I and several other parents we know have come to the same conclusion. We all wish we had addressed the social skills much earlier in the process.
Another conclusion of the study, one that the researchers found counterintuitive, is that no link was found "between a child's decreased daily living skills (such as dressing or toilet training) and increased parental stress and psychological stress".
I agree. I find that counterintuitive as well. I imagine there might be a difference between what is "hard" and what is "stressful". With behavior problems, fear is always lurking around just below the surface. A telephone call during the school day is a source of trepidation. Interactions with other children can be a roll of the dice. A simple request like, "let's go out to eat", will very likely be met with a tantrum. If you enter your child into a situation that you're not sure he or she can handle, you're on guard for that outburst to occur. You know if it does, everyone around you will be focused on you and your child and, as most of us know, they are usually not sympathetic eyes. Just judging ones. This doesn't even take into account the number of situations you avoid with the child because you are certain they cannot handle it.
I have one concern about the study. I'm not a fan of "Who Has it Harder?" contests. As hard as I think our situation with Robbie has been, I get no comfort from knowing "at least he's not (some awful thing worse than high functioning autism)". The hardest challenge any parent faces is their hardest challenge. I doubt any parent engaged in a parental struggle feels better by the knowledge, "at least our child's not autistic". Nonetheless, the lack of knowledge and understanding about autism creates a strong case for the need to educate the public about the issues and challenges everyone dealing with it has to face. It just doesn't have to occur at the expense of anyone else.
UW's study is an interesting one that probably created as many questions as it answered.
Welcome to Autism World.
Thursday, July 16, 2009
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:
Monday, July 6, 2009
For the first time that I can recall, a law has been passed that directly addresses a specific problem that we've had and made it go away.
Problem -> Law Passed -> Problem goes away.
The hardest part to getting Robbie certain therapies is the availability of time. Unsurprisingly, the after school hours are quite booked. Last year, when we asked Robbie's school if we could schedule some of his Occupational Therapy sessions during school time, we were denied. Apparently, it was against the law (which seemed absurd to me). After a long wait, we were finally able to get him into an Occupational Therapy session. Considering other therapies has been impossible to do given the lack of available time.
Less than three weeks ago, with the help of our State Senator, Florence Shapiro, Texas Governor Rick Perry signed into law (HB 192) changes regarding truancy in Texas as amended with the following (b-3 added):
(b) school district shall excuse a student from attending school for:
(1) the following purposes, including travel for those purposes:
(A) observing religious holy days; [or]
(B) attending a required court appearance;
(C) appearing at a governmental office to complete paperwork required in connection with the student ’s application for United States citizenship; or
(D) taking part in a United States naturalization oath ceremony; or
(2) a temporary absence resulting from health care professionals if that student commences classes or returns to school on the same day of the appointment.
-> (b-3) temporary absence for purposes of Subsection (b)(2) includes the temporary absence of a student diagnosed with autism spectrum disorder on the day of the student ’s appointment with health care practitioner, as described by Section 1355.015(b), Insurance Code, to receive a generally recognized service for persons with autism spectrum disorder, including applied behavioral analysis, speech therapy, and occupational therapy.Boom!
It was Senator Shapiro of Collin County who got this portion of the bill amended with this language just in time to be passed by the Texas Senate. That's pretty damn cool. Everyone, including parents, children and the schools themselves, will benefit from this law.
Thank you, Senator Shapiro. I think you've solidified my vote for a long, long time.
Thursday, July 2, 2009
If something's good, it's a good enough to parody. If a parody is good enough, it's going to ring a little true itself. "Welcome to Holland" is no different.
I've learned that people in the Special Needs community have developed a pretty good sense of humor. Like many exclusive groups where membership is involuntary, there are rules about the humor. The most important rule is: If you're in the group, you can tell jokes. If you're not, you can't. President Obama learned this the hard way on Leno. He also committed the sin of telling a joke that wasn't even funny...but I digress.
Tanya Nielson of Australia is a member of the group. She wrote one of the funniest parodies I've read in a while called "Welcome to Somalia". For those parents who find it hard to grapple with the "very lovely things" of Holland", you'll feel right at home in Somalia.
Holland seems like such a nice 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 Rembrandt's.
Somalia? Not so much:
It's a scary, truly unpleasant and very different place. It's far more exhausting than Italy, more life-threatening than Italy. But after you've been there for a while and have managed to escape from the plane and are fighting for your survival you stop to breath, you look around... and are scared witless by the violence, degradation and lack of human rights. You learn to fight for things you always took for granted: education, support, understanding.
My favorite part is the last line, where she replaced:
But... 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.
But... as you spend your life mourning the fact that you didn't get to Italy, you will never fully relate to others the trauma and emotional scarring, despondency, desperation, solitude and terrifying loneliness of Somalia.
This is what it is like bringing up a child with Autism Spectrum Disorder.
So next time you see a child having a meltdown in a shopping centre, or your kid is lashed out at by a SN child in their class, or you witness a mother is sitting on a bench crying as she struggles to restrain her raging 8 year old who is kicking, biting and screaming "I f**king hate you ", you can say to them:
SH!T - is that what Somalia is like? I had no idea.
God knows where this Holland is, because I sure as hell don't!
As I said in the last post, I'm glad to be in Holland because I'm crazy about Robbie just the way he is. That being said, I relate to Somalia a helluva lot more than Holland. I only have go all the way back to two Mondays ago to recall hearing "I hate you! I hate you!" as I brought Robbie into his first day of summer school - feeling the eyes of every other student, parent and teacher bear down on me as I passed through the crowd with him in my arms, kicking and screaming. I got him all the way into the classroom, only to see him bolt out of it and repeat the verbal assault on the teacher.
Some of you probably didn't find "Welcome to Somalia" all that funny. In fact, you might think it's a little cynical. All I can say is, like most inside jokes, you had to be there.
Sunday, June 28, 2009
"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.
Sunday, June 21, 2009
Friday, June 12, 2009
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 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.
Thursday, June 11, 2009
(oops - we means "I" - Joy and the kids did take advantage of it and it went well)
June 13, 2009
AMC Entertainment (AMC) and ASA have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment on a monthly basis with the "Sensory Friendly Films" program.
In order to provide a more accepting and comfortable setting for this unique audience, the movie auditoriums will have their lights brought up and the sound turned down, families will be able to bring in their own gluten-free, casein-free snacks, and no previews or advertisements will be shown before the movie. Additionally, audience members are welcome to get up and dance, walk, shout or sing - in other words, AMC’s “Silence is Golden®” policy will not be enforced unless the safety of the audience is questioned.
Thursday, June 4, 2009
I'm very proud of both of them. Kelly ended the year on a high note by scoring excellent on her TAKS tests (statewide standardized tests). She was commended in math and was one question away from being commended in writing. I'll withhold my judgment about the disparity of her standardized test scores with her classroom scores. I'll just say that Joy did a great job preparing her.
Robbie had a roller coaster of a year but it ended very well. I couldn't be happier for him or with him.
Today, each of the grades had a party at school. Robbie had been dreading his party for days. He'd been talking about it a lot, hoping to convince Joy to let him stay home. It was obviously a great source of anxiety for him. I'm not sure if he feared the noise or the emotions or just wanted an excuse to stay home from school. Nonetheless, Joy finally convinced him that if he went to school and then the party, but didn't like the party, he could come home. Daddy would be there if he wanted to come home.
Daddy was there.
How did it go?
Questions like this are usually considered rhetorical. It's like, "How are you?" Most times, people expect "fine" or "good" or some other brief, unimportant response. In Autism World, this is never a rhetorical question. Whether it's a trip to the occupational therapist, a trip to the mall or even a visit to a friend's house, this question demands a thorough answer. "Fine" isn't going to cut it.
So, how did it go?
I thought about this as I watched the first grade class enjoy its party. All of them were outside enjoying a series of games. It was like one big recess. I knew I would be asked how it went so I was already thinking about my answer before the party was over.
As a I thought about it, the concept of morale came into my mind. When someone asks, "How's morale?" what they're really asking is "How's everyone dealing with a situation that sucks?" Morale is usually spoken in the context of troops in a war or employees after layoffs or a company set back. Nobody asks, "How's the morale?" of a hockey team that just won the Stanley Cup. Asking about morale applies context to the question without actually describing it.
If I answer the question above without context the answer will be quite different than if I answered with context.
So, how did it go - without context?
I caught up with Robbie's class when they were already outside. Most of the kids were playing with jump ropes or four-square or just having fun with each other. Robbie stood off to the side by himself, in his own little world. He'd spin around and mutter to himself a bit. When it was time for the class to move on to the next area, his teacher had to pull him into the line because he didn't come on his own. He didn't play any of the games. After a while, he just sat down next to the teacher.
After a few "stations", each of the kids was given a freeze pop to cool off. Robbie wanted a red one. Unfortunately, the parent helping gave Robbie a lemon flavored one - not a red one. I don't know why she didn't give him a red one. They still had a few. He took one bite of the lemon flavored one, told her it was "yucky" and threw it away.
When his class arrived at the place where they could write with chalk, Robbie was excited. He grabbed a piece of chalk and wrote away. When he walked over to another area to continue his artistry, he tripped on a curb and skinned his leg pretty badly - blood and all. I whisked him down to the nurse's office, where he proclaimed, "That party is dangerous!"
After, a quick swab to clean the wound and two Band-Aids later, we went back to the party as it was ending. I followed him back into his classroom. He'd had enough. It was time to go home - 5 minutes before final bell.
So, how did it go - with context?
When I arrived at the party late, I was surprised to see Robbie with the class. I expected him to be angry with me for being late and want to leave immediately. But he didn't. He made it clear to both me and his teacher that he wanted to stay (though, I don't think he realized that this was the party - I think he was expecting something in the classroom). He was enjoying himself. When the teacher asked him to do something, like get in line to move to the next play areas, he did it. No fussing. No tantrums. Nice smooth transitions.
When he didn't get the red freeze pop, he was disappointed. But he didn't throw a fit, or yell or kick or scream. He told the woman he wanted a red one and she didn't give it to him. He was disappointed and expressed his disappointment. When I asked her a few minutes later if they still had a red one, she pulled one out of the ice chest and handed it to Robbie. Disaster averted. A few minutes later, a little girl walked up to him and said, "Look, Robbie. I've got a red one just like you!"
Although he was in real pain after his fall, he handled himself very well. After it happened, he walked up to me and said (with a wince) that he'd hurt himself and needed to go to the nurse's office. When I saw the size of the scrape and blood, I agreed. No one knew what had happened. They were surprised to see us go. He went to the nurse's office calmly. It was a far walk for a first grader with a limp. When we arrived, he didn't want her to clean the wound but didn't give her any trouble when she did. When I asked if he wanted to go home or back to the party, he chose the party. When we returned, his teacher and the special education specialist were astounded. Nobody (including me) expected him to return. I thought the day was done.
He left his class five minutes early; which was sixty-five minutes later than I expected.
So, how did it go - really?
It went great. Much better than I ever expected. Thanks for asking.
Saturday, May 30, 2009
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.
Friday, May 29, 2009
The last week has been a blur. It started at 4:00 AM on Tuesday as I awoke to catch a 6:00 AM flight to Chicago. Then Toronto. Then New York. And this was a short week?
Today, however, wasn't a work day in New York. It was the first day of the Backspace Writer's Conference. Backspace is a great organization for writers that I joined in February 2008 when I was still working on my novel (and a few weeks before the idea to write Kicking and Screaming hit me).
The mission statement for Backspace is "Writers Helping Writers". It's primarily an online forum where writers interact, critique each others' work and get advice from those who have made it to the Promised Land - published authors. Many literary agents participate and also provide feedback and advice about how to get to that level beyond the 'mere' writing of a book. It's a community that not only takes writing seriously but the business of writing seriously. How serious is it? In the past year approximately 110 books have been published by Backspace members. In terms of its goal, it's safe to say, "Mission Accomplished".
I'm here because I want to learn what I need to do to get my memoir Kicking and Screaming published. I participated in a workshop that was called "Two Minutes; Two Pages". In it, we each read the first two pages of our book aloud in front of two literary agents and approximately twenty other authors. The agents then provided immediate feedback as if they were reading it as a submission.
In some cases, the agents listened to the full two pages. In other cases, the agents stopped the authors before hearing it all to point out issues or concerns (but they were all quite good). Fortunately, I made it to the end of my second page without being stopped. Overall, I think I came out of it fairly unscathed. There were a few minor comments about the content, and a minor comment about the use of the word "reluctant" in the title. Later in the day, I received a few compliments from other authors who heard/read it. The one concern expressed by the agents was about the number of books already out on autism and the need to have a "platform" - a new buzzword in publishing - to help market the book.
A "platform" is a built-in following or market that an author has established to give publishers confidence that the book can sell. Examples of "platform" include celebrity (probably the most common, since they already have fans that might likely buy their book), credentials (especially for non-fiction), contacts or strong endorsements. Basically, they want to lower their risk. Who doesn't these days?
I created this blog with "platform" in mind. I hope it grows and gains a wide following. There are several other platform-related activities I'm considering. But as Day 1 comes to a close, my own story begins to take an interesting turn - which I'll save for tomorrow.
Tuesday, May 19, 2009
Given the immediate improvement in his performance after changing classrooms in March, much of that worry evaporated - but not all of it. Some of it still lingered.
We've known that Robbie is smart for a while. However, we were concerned that he'd be able to demonstrate that. In kindergarten, he validated that concern. His test scores ranged from 100% to 0%. We quickly figured out that if he was interested in the test, he did well. If it was a computer-administered test and he wasn't interested, he clicked on the mouse as fast as he could, regardless of the answer, until he was done and could begin playing. Joy and I worked with his teacher and the ARD committee to insure he had close monitoring during tests and the scores moved to where we expected.
Test scores weren't the issue in first grade, although we did see a score drop a bit when they let him try to do it too long on his own. The issue was his flat out rejection of doing any work. I feared that his behavior could hold him back, not the grades.
Everything changed when he changed classes in March. We've learned a few things from this process.
It's very common for children on the autism spectrum to get overwhelmed either by a sensory overload or an anxiety overload. We've known that Robbie is a bit of a perfectionist. What we didn't know was how this could build up over time. Getting things wrong or failing to do things weren't isolated occurrences. They were cumulative events.
In his previous class, he wasn't sure where he stood on a daily basis (which is 'normal' - kids don't get daily report cards). If he missed a problem, he thought he'd dug himself a little hole. When he couldn't do an assignment, he dug a little deeper. When he was overwhelmed by a homework assignment, he dug even deeper. Pretty soon, he was halfway to China with no hope of getting out. He saw this mountain of insurmountable work that he could never complete. Since he was never going to catch up, he gave up. Unfortunately, he was unable to communicate this anxiety to anybody. Everyday had become an anxiety overload and it began the minute he opened his eyes. Welcome to Autism World.
On his first day with his new teacher, she explained to him that he was starting with a clean slate. What was done was done. He was getting a fresh start. I don't think she had any idea just how powerful of a message this was for Robbie (nor did I). For him, the hole he'd been digging was magically filled. The insurmountable mountain of work had disappeared and his anxiety went right along with it. I now believe this was why the change in him was so drastic. Like a light switch, his anxiety was turned off. Everything got better.
Another thing the teacher did was set up a daily scorecard for him. He has five categories of work to complete each day. If he completes his work in a category he gets a smiley face. If he doesn't, he gets a sad face. There are also consequences. If he gets four or five smiley faces a day, he earns a sticker from the teacher. Five stickers earn him the choice of free computer time, free choice time, or no morning work. In addition, if he earns four or five smiley faces a day he can play on the computer when he gets home. Three or less? No computer.
At first, I thought the power of this approach lay only in the consequences and rewards. I now believe there has been an additional benefit. Every day is a new day. There's no buildup. There's no hole being dug. The mountain never becomes bigger than a small pile of dirt. Every day is fresh.
In hindsight, these solutions seem painfully obvious. Unfortunately, they're not - by a long shot. Despite the trial and error nature and unpredictable success rates for any efforts relating to improving an autistic child's environment, dramatic changes like this are rare but not unheard of. When the child is struggling with a sensory or an anxiety overload and the source of the overload can be eliminated, the results can be this dramatic. We've seen it before. However, many obstacles stand in the way of achieving them.
The first is identification. Since the number of conditions or situations that can overload a child on the spectrum is almost unlimited. Knowing which one (or ones) is causing the behavior is almost impossible to predict. In the case of Robbie's classroom issues, our guesses included problems with other students, fluorescent lighting (a known issue with autism), and even the design of the room itself (door vs. no door). His previous teacher did everything she possibly could. But without being able to recognize the issue, it was hard for any of us to know what to do except create a clean slate.
The second is communication. Although Robbie is experiencing the overload, it doesn't mean he can always recognize it, identify it or communicate it. Asking him about it can produce clues but not specifics. This is incredibly frustrating for us as well as him.
And finally, there is an issue of consistency. What caused an overload yesterday might not cause an overload today, but it might cause one tomorrow. At this point, its like playing a game of whack-the-mole until you get lucky.
Nevertheless, this is a huge victory for us; one that could have long lasting effects in helping Robbie manage his situation. It can make a difference in how he manages his school work from here on out. It can even help him manage his career someday.
It can also disappear tomorrow and become meaningless. That's the way it is with autism.
Still, we're going to enjoy the hell out it. Combining yesterday's win at Robbie's parent/teacher conference with Kelly earning her Bronze Award in Girl Scouts, I'd say yesterday was pretty damn good day.