Saturday, March 27, 2010

The Family Thing - By Chantal Sicile-Kira

Even since Chantal Sicile-Kira found me on Facebook (for which I'm thrilled) I've had the opportunity to read many of the important things she's written about autism. Her latest blog entry on Psychology Today is one of her best.

In her post, Chantal touches upon some of the less obvious areas where autism affects a family, especially the grief (that many experience but few know how to express), the misplaced anger (oops, sorry about that), and the impact on siblings. Even something as simple as finding a baby sitter - something we struggled with - appears to be a minor issue but can become a major contributor to stress.

Chantal has a new book out called 41 Things to Know about Autism, which I'm looking forward to reading. According to Temple Grandin, it's "a wonderful first introduction to autism for parents, teachers, relatives, and neighbors of a child on the autism spectrum".

Friday, March 12, 2010

The ARD - Morale Was Good

According to Webster's, the definition of 'morale' is:
2a: the mental and emotional condition (as of enthusiasm, confidence, or loyalty) of an individual or group with regard to the function or tasks at hand. b: a sense of common purpose with respect to a group: Esprit de corps.
That definition is unsatisfying.
Does anybody ever wonder about the morale of a basketball team that wins the Big East tournament or a rock band playing in front of a sold out stadium? They perform "tasks at hand" and have "a common purpose" but why aren't we concerned about their morale? I don't know but we're not. We're usually more worried about the morale of members of the military or employees at a struggling company. This disconnect is why Webster's definition misses the mark.
When I think of morale, I recall P.J. O'Rourke's definition from his 1993 book, Give War a Chance:
"Morale...means how well people are doing when they're not doing well at all."

See? Now that makes a lot more sense. Because no matter how good morale is in the middle of a war zone, there's a good chance that most of the soldiers would rather be someplace place else - if not anyplace else. Probably at that rock concert or watching the Big East tournament.
I wanted to review the definition of morale with you first to give yesterday's ARD meeting some context.
It was a good meeting and several factors contributed to that:
A. Robbie has experienced phenomenal progress over the past 12 months;
B. We'd read the evaluation report in advance so there were no bad surprises; and
C. This was the best ARD committee assembled to help Robbie since we entered Autism World.
C really shouldn't have been a surprise since we'd already spent a lot of time with most of the ARD members But it was the first time it felt like the team really gelled and each member finally "got" Robbie; they knew the subtleties of what worked and didn't work with him.
The only new member to the team was the diagnostician who completed Robbie's reevaluation (they only participate in the ARD's every three years). Considering her predecessor three years ago opened that meeting - the one where we learned of Robbie's diagnosis - with the pathologically stupid question, "What do you think we're going to tell you today?", the diagnostician really didn't have a high bar over which to leap. Nonetheless, she did an excellent job.
We'd battled anxiety, depression and sleepless nights during the week leading up to the ARD. It was a pretty awful week. Apparently, this is to be an annual occurrence for us (after three years, you'd have thought I would have noticed this pattern earlier). But now it's finally over. It went well and there won't be another one until next year nor another reevaluation until 2013. Smiles and high fives all around, right? Morale's good, right?
We're doing well when we're not really doing well at all. Given the choice, we'd rather have spent the afternoon at a rock concert or watching the Big East basketball tournament or pretty much anything else. But this is what we had to do and we'll enjoy our hard-fought victories as best we can; knowing that we'd have preferred not to have had to fight for them at all.

Monday, March 8, 2010

The Reevaluation - Part Deux

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

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

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

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

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

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

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

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

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


Monday, March 1, 2010

The Reevaluation - Here We Go Again

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

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

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

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

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

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

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

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