When you are the whale, you are the parade

I had a great time Friday evening attending a gathering to see my friend's fabulous New Zealand trip picture show, and then meeting up with friend Casey at Park Pub for hours to laugh about annoying tour guide experiences, among other things. This was my first time at the Park Pub, and in spite of the vinegary taste of the white wine I ordered, I really liked the vibe and food in this place a lot. A new hangout that's just down the street! Casey had a very good chimay blue. I would know, because instead of just ordering another drink, I made my big glass of bad wine (after glasses of very good wine at the first get-together) last the entire night and just helped myself to whatever drinks he had. I see that I fit into the People Who Will Just Have a Bite of What You're Having category on Lindy West's list of The Different Kinds of People That There Are. Order your own chimay!

I've thought about it, and I have a few categories I'd like to add to that list. One is Tour Guides Who Talk Incessantly on the Bus, Starting Their Rambling With "Ehhhhhh" Over the Loud Speaker, When You'd Rather Listen to Your MP3 Player or Doze Off.

I brought my Israel book, at Casey's request, but then the poor guy had to listen to my lecture about everything I learned, observed, or had an opinion about from that trip. I was a bit rusty but still managed to talk and talk. He was a good sport about the whole thing. I don't think I've laughed as much since Paris.

I'm really into the new Yeah Yeah Yeahs song "Zero." Although, when I looked up the lyrics I see that Karen O is singing "Your zero-oh" while I'm singing "You're a ZERO-OH!" as I'm wrapped up in the cool music and thoughts about who I might like to dedicate this song to if I had the chance. :) I'm a little off the mark.

After Friday, it's been a pretty much AS focused weekend. I spent a lot of time reading and taking notes from Eating an Artichoke for my book review, and then consulting my copy of the Complete Guide to AS by Tony Attwood. I finished Artichoke today, which was easy to do, because it was an engaging, fast read. Echo Fling wrote the book in 1999 (published in 2000), after dealing with years of doctors visits with wrong diagnosis, figuring out special education accommodations for an unclear disability, and basically navigating family life with a child with AS before having a pediatric neurologist give the correct diagnosis. Even then, at that time information and methods for teaching students with AS were pretty limited, so she had to figure out so much on her own with very little guidance. It's interesting to reflect on what has changed in the last 10 years in terms of awareness, research, published information, and intervention/coping strategies.

In my mind, Fling could have authored this book from a place of frustration, anger, self-pity, or exhaustion, and I would have understood. But no. She writes from a calm, compassionate, and matter of fact standpoint that I very much admire. As I learn more about AS/ASD, I feel like I'm starting to comprehend a bit how tiring and difficult it can be to learn to deal with this world, but this book showed the weight of responsibility and uncertainty for the parents too. Fling faced a lot of parenting challenges and dead ends in what has turned out to be her life's work to help her son. She so clearly has unconditional love for Jimmy, and she demonstrates pure devotion and patience in her efforts as a mother. She gets him in a way that no one else does and has experienced many successes over the years in helping him learn to function in the mainstream world. As a mother, she is a great advocate for him. And, from what she describes, he is a delightful boy (man now) with so many unique and extraordinary qualities.

Yet, in spite of the positive tone of the book, she was clear about the challenges. I kept notes, and I filled up an entire page of bullet points on difficulties faced by Jimmy and the Fling family as a result of the differences posed by AS. Very little is simple. Jimmy had to be taught how to communicate (initially used lines from favorite movies to do this), read expressions, and understand feelings, things most kids learn from "osmosis" from observing and interacting with the people around them. Teaching this requires starting with the very basics. He learns differently and can get confused easily if he's expected to do too much at once. Learning to dress himself and tie his shoes took a lot of time and effort. He has pretty big sound and tactile sensory issues that make things like going to an amusement park stressful, even if he looks forward to going for weeks in advance. For years he'd only wear one brand of socks and finding an acceptable alternative after he grew out of his preferred type took several tries. Christmas, other holidays, and trips have to be modified to avoid overload. Halloween was a stressful no-go most of the time, even though he liked dressing up. He had a lot of fear and anxiety about the act of trick or treating itself.

Jimmy has a preference for sameness and consistency and will ask the same questions about what's going to happen over and over again for reassurance, driving his mother a bit nuts. Change is really difficult and requires a lot of preparation, and he had a hard time (years) adjusting to the arrival of his sister. He'd become extremely upset if his mom changed something as minor has the color of his sheets. If Jimmy learns something incorrectly, it takes a huge amount of time to undo what was learned incorrectly and then process the right information. He doesn't like much physical contact and leans to hug. He obsesses and willfully won't let things go. As a kid, he obsessed over Thomas the Tank Engine and Toy Story, demanding that his mom purchase each one of the Thomas trains for his collection. He struggled to make friends and dealt with bullying. It was heartbreaking to note how upset Jimmy felt if he knew other people were laughing at or making fun of him, but most often he didn't know it was happening unless someone told him. It took a lot of time and great effort for him to control his stimming (hand flapping, humming) in public. Something as simple as ordering a cheeseburger or a pizza or inviting a friend over for a sleepover is an ordeal.

The list goes on, but you get the idea. The adjustments a family will make with a child who has AS/ASD are enormous. It's hard to imagine, and I don't think I truly understood the impact before. I'm not sure that I can now, either, but I've had a glimpse of what life is like for the parents and families.

Following up on Artichoke, tonight I watched Mozart and the Whale. Overall, I thought it was great, and I loved that there was such fantastic humor and good music throughout. I was deeply moved by the story, although I don't think I can describe why exactly. As was said quite a bit in the movie, I don't know what to say. I felt incredibly emotional while watching it, but not in a sad way really. It just got me.

--Meganar

P.S. Facebook friends, Paris pics are now up on my page. :)