The Katz’, Mission of Complex: Our Journey Through Hyperlexia. I could never explain the love and wonder that this blog has brought me. As one of the first blogs I have followed, the journey with them has truly touched the journey in my home with my eldest who is on the Autism spectrum. It has touched my heart just the same; a real blessing.

This from The Future of Hope. Thanks!

http://thefutureofhope.wordpress.com/2012/01/27/eegads-stage-fright-rules-lists-and-awards/

While getting the newspapers and bottles together for a trip to the dump, I came across last fall’s schoolwork amongst last weeks recyclables. Elise had helped Nate clean out his backpack in preparation for the term. I rescued a bunch of worthwhile tests and projects.

Nate has always had a problem writing essays. It takes a lot of recall (which he has) and devoted logical thought (which he has less of). I’ve always taught him to write as many facts down as he can remember, and always have a good opening and closing paragraph. His best efforts are weak. His worst are inadvertently comical.

Here’s a sentence from an essay on 1960′s social movements:

College students fought for women’s segregation rather than equal rights.

Poor boy. He had his facts in his head but they came out like a turn at Boggle, a hodgepodge mix-up of words. His professor had nothing to add other than a “?” in red and, also in red, “very confusing” at the end. That’s life with Nate.

I’ve mentioned Nate-speak before. It’s the way Nate garbles language, yet, if you know him, you get what he means. Here’s the concluding sentence from an essay on the fight for women’s rights in the early 20th century:

Also, by 1900, women got 20% of their income, and it was increased to 50% by 1920.

To me, it’s obvious what he means, that, in 1900, women were paid 20% of what men made, and, twenty years later, they were paid 50% for equal work. That’s what he means. Whether that’s correct, I don’t know, but he did get those facts down.

Needles to say, Nate got a D in history, though, with a few months left in his college career, Nate’s cumulative GPA is 2.71. Not too bad.

Next post, a few excerpts from his Children’s Lit course work. He did well in that one.

During the last week, I read with great interest the stories regarding the American Psychiatric Association’s impending changes in the definition of autism. Anyone who has been looking at it with an unbiased eye could only conclude that the explosion in autism, leading to the present 1 out of 100 children proliferation, only came with the expansion of the spectrum in 1993. For all the vaccine-centric, diet-centric arguments, there was one thing that changed the game: a new definition.

It’s been interesting to observe the growth of cultural awareness since then. 1993 was when we realized something serious was up with Nate, so our experience coincided with the widening in diagnosis and publicity. Since then, we see that it’s very easy to catch almost everyone in the autism net. The Asperger’s kids, some of who we know well, remind us of similar types from when we were in school: brilliant, overly social, prone to saying the absolute wrong things at the wrong times. And, as Asperger’s sufferers became conversationally interesting subjects for the media, it became easy, too easy, to look at older friends and relatives and say, “You know, I bet he’s got Asperger’s.”

Nate is different from those kids and certainly different from non-verbal kids. He would have been diagnosed with something. At the heart of the proposed revisions is how they will affect the most important thign for all parents traveling in this giant autism boat. What will happen to the services we all depend on? Perhaps many of the Asperger’s kids will be able to get by, though less well.

I know Nate would have found it impossible to succeed had he not been diagnosed autistic. I vividly recall the school meeting we had when he was around 6 or 7, when we were asked if it was OK to label him autistic for their files. We didn’t care, though we heard that some parents did. They didn’t want their children labelled as such. It was a blow to their family image.

We didn’t care about that stuff. There was only one question: Will Nate get everything he needs if he is put down on the form as autistic? Once we got the answer that, yes, his autism opens new doors to help, there was no other choice we could reasonably take. We didn’t care about the term, we cared about Nate improvement.

So, I have great concerns for all the kids who may be lopped off the autism wagon and lose their services. There’s much potential in these children; we all know that. To deprive them, their families, and society, of their unique abilities would be shameful. I do understand the position of parents with much more troubled kids who feel that the higher functioning autistics get the most benefits, both dollar- and coverage-wise.

It’s undeniable that the widening of the criteria back in the early ’90′s did one thing that is irreversible. It created a world where autism is no longer an unknown, where public tolerance for “offbeat” kids is at an all-time high and growing, and, now that kids like Nate are turning into adults like Nate, the world is a bit more ready to include them than they would have been otherwise.

There’s no going back from that, regardless of what the revisions turn out to be.

**********************************

There may be some exciting news about Nate in the coming weeks. Fingers crossed. I’ll fill you in if something develops.

In Talk About Patience!, I quoted Nate as he wrote about hitting his gym teachers with a dodge ball, and telling another teacher “I’m going to kill you.” There’s another Nate story, one he didn’t write about, when he locked the bio teacher out of the lab room because that teacher didn’t like Nate using the computer. Nate logically concluded that the problem was not his conduct, but the incessant negativity of his teacher. So he locked the classroom door. His teacher was upset, very, because in the lab were chemicals, burners and various other dangerous items that Nate had absolutely no interest in.

For all Nate’s peccadilloes, he never suffered more than being sent to the Principal’s office. Everyone at school knew Nate, knew what he could control and what he couldn’t, knew, too, that bad behavior was to be dealt with in an appropriate way.

So I was shocked to read a story brough to me via Google Alerts, called “Autistic teen charged in alleged teacher attack.” (I’ll put a link at the end).

A 13-year old autistic boy’s speech therapist of two years filed felony charges against him for hitting her with headphones, so hard, she said, that “it felt that my skull cracked.” Understood. I have been on the receiving end of Nate attacks that were pretty painful. And I empathize with her situation and the shock of having someone you’ve devoted yourself to turn on you so violently. Again, been there.

But pressing charges, third degree felony charges for assaulting a public (or private) education employee? After years devoid of a single incident?

I couldn’t quite believe it. I know what Nate’s support people put up with over time and what they shrugged off. Even now, with Elise, there are times when Nate lashes out and she, though hurt emotionally and physically, sucks it up and ends up feeling apologetic for him.

What shook me up is, from a parenting standpoint, the idea that someone counted on to know the child, maybe your child, could turn on him in such a grievous way. That’s not to excuse the boy’s tantrum. We’ve never let Nate slide on any bit of bad behavior. He is told what is right and expected, sometimes punished, and always made to apologize to the wounded person. He doesn’t need prompting any more; he knows now when he crosses the line and his quick turn from pitching a fit to asking for forgiveness is wonderful and shows how, even when he acts out beyond his control, he immediately grasps the error and seeks to make it better. That’s maturity.

I’m thankful, after reading this woeful bit of news, for all the people who have struggled along with Nate. You all know who you are. Thanks for not sending him to jail, even when, by law, he may have deserved it.

http://www.cbsnews.com/8301-201_162-57357015/autistic-teen-charged-in-alleged-teacher-attack/

The Autism Support Network frequently reposts Mission of Complex entries on their Facebook page and via weekly email newsletters. Four days ago they put up a story about Nate’s struggles for independence. As of this moment, 137 people have liked it, and 16 commented. One person said, “At least Nate can talk.” I’ve been thinking a lot about that this week.

I wasn’t sure how to take the comment. Was it a “count your blessings it could be worse” message? Was it a “stop complaining, you have no idea how tough things can be” salvo? Was it meant to be snarky or was it a sad message from a struggling parent? Maybe, to some, we’ve got it easy, that we think we’ve had a tough go of it, but, really, compared to their situation, our lives are cake. I don’t know.

Karen and I have friends with a non-verbal child and I can see the difference between him and Nate at the same age, but we all struggle in our own ways. What having Nate has done for us as parents is shown us that there are a variety of roads to “normal” and that it becomes impossible to pass judgment on other people. No one has any idea what another is going through. All you can do is be kind always and helpful as much as possible. Working with Nate has made me a better person.

Mission of Complex  is about telling stories, revealing truths as I’ve seen them, sharing laughs and, just maybe, giving some hope to parents who don’t see any in the moment. Regardless of the individual situation, we’re all doing the best we can with what we’re given, and swapping stories, both the joyful and demoralizing, can only help us all feel a bit less alone.

And, right this second, while Nate sits to my left, both talking and making noises he himself refers to as autistic, to my right the sun is shining.

In early November I wrote a post titled The Next Step. There’s a picture of Nate in his “C Boy” T-shirt and a bit of an explanation on how that came to be.

Nate took an independent study course last semester and worked on an idea called “Alpha Folks,” a line of tees with designs created by Nate. A different face for each letter, male and female, resulting in 52 unique creations. He’s done several, and, though it’s still in the early stages, he’s on to something. The next phase is to create these images on Adobe InDesign, rather than Nate’s primitive sketch and scan method. Once he gets the details worked out, he’ll be on his way. We’ll be taking orders from his website in no time. Right?

Above is a gallery of his recent work. Some are wonderful; some need refining. I love “Q Fella.” I don’t quite see “K Man.” “L Man” may be my favorite, with his strong horizontal lip.

I’d buy “J Boy” right now. Maybe he’d give me a family discount.

Last night, Joey, Karen and I sat down to watch Margin Call, an excellent movie on the behind the scenes maneuvers of Wall Streeters in late 2008. I wasn’t in that end of the business, but many of the characters struck an uncomfortably close chord and made me depressed. What a pointless career!

Nate didn’t watch with us. Instead he puttered around, drawing, watching cartoons, and using the iPad and computer.

During the movie, my phone chimed with a text. It was from Karen. Odd, in that she was under a black fuzzy blanket on the couch, but I thought maybe she had her phone and sent me a message. Here’s what I got:

“Just suck it, man!”

Nate had her phone. I’ve written about how Nate used my Facebook page (he calls it a Facebook article) to post his own bits of silliness (My Homegrown Hacker). He has no sense of proper protocol and has sent texts from Karen’s phone to her friends about the subjects that give him the giggles: cartoon characters wearing diapers, things that smell like stinky cheese. Imagine the perplexed recipient!

Of course, I sent Nate a crude response, for a joke, but he had moved on and didn’t catch it. Sometimes I can keep him going conversationally, to the amusement of us both, but not last night. Last night I just got a humorously nasty message.

9/14/2006

“There were many rude videos on YouTube, a website with many cool videos. When I’m at school, I won’t talk about anything rude, because I’ll be in big trouble.”

YouTube, founded in early 2005, changed Nate’s behavior in the stereotypical “kids are influenced by what they watch.” From the moment Nate discovered the site, he picked up a plethora of curse words which he employs with abandon. Hysterically so, as he often doesn’t get them quite right. He’ll say things like “quit the fuck out” and it comes across, oddly enough, as sweet rather than nasty. He obviously was spouting profanity at school, if he was already worried about getting in “big trouble.”

10/4/2006

“On Monday, we watched a movie called Strange Brew. It’s a comedy about Bob and Doug McKenzie, who loved beer. It was really funny. The funniest part of the movie was that the dog, Hosehead, was a superhero, his cape was flapping in the breeze, and he fell off the tent of the Oktoberfest. They painted him to look like a big skunk.”

Never say we haven’t raised our kids on the classics! Nate remembers the general plot of most movies he’s seen and books he’s read. I think sometimes that he is exactly like everyone else in this regard. His lack of understanding may cause him to not get crucial plot points (not of Strange Brew  in particular) but, over time he knows as much as most. Ask the average person what Of Mice and Men is about and they ‘ll probably give you a sentence or two, about the same answer as Nate.

1/11/2007

“Lord of the Flies takes place in a deserted island. In one part, many kids yell, “KILL THE PIG, SLIT HER THROAT, BASH HER IN,” but I haven’t read that yet. I know that scene from when I watched that movie two years ago.”

I would always get the next year’s English syllabus the summer before school started and  watch movies of all the coming books with Nate, to give him a visual head start on the material. Those were great times. We would hang out together and discuss the films. When we watched West Side Story and Romeo and Juliet, I made Nate a chart of the characters and story lines so he could compare. I could see him on the couch behind me, checking out his notes as he watched. When he’d read the book, he could quickly point out the differences between the movie and the text. I miss those nights.

4/26/2007

“Yesterday, I went to math class and did my work. Ms. Weir told me to stop mumbling, but I yelled loudly and I was sent to the office. I’m not allowed to do that anywhere, except at home.”

There’s a long list of words that set off a pat reaction from Nate. If he is muttering to himself, and you tell him to stop mumbling, he’ll scream. Always. Woe to the uninitiated who innocently ask him to stop mumbling. It’s not exactly true that he’s allowed to scream and yell when he’s at home. He just does.

That’s it from 2006/07. On to 2012. We wish you all a Happy New Year.

http://www.nytimes.com/2011/12/26/us/navigating-love-and-autism.html?_r=1&hp

Funny, yesterday at Christmas brunch next door, I was asked if I thought Nate would ever find a partner. In truth, I doubt it. I’ve asked him before whether he likes girls or boys, whether he’d want to get married to a girl or a boy, whether he’d want to have kids. He’s always non-committal. So, I’m not sure of his predilection. He’d probably like to settle down with a cartoon.

But this piece about two autistic young adults in a relationship (I wouldn’t quite call it love) gives me something to think about. I’ve found over time that I can have great conversations with Nate, as long as I’m meeting him on his turf. That seems to be one of the features of this relationship. Maybe there is a girl, or boy, out there for Nate, his own Kirsten, who can accept him for what he is.

Until I read today’s article, I couldn’t conceive of how that could happen. The very thought that Nate would have someone outside of his family who would understand him and be with him, if only for companionship, would be a Christmas miracle, like the birth of Jesus or the Knicks’ last second defeat of the Celtics.

I stumbled upon Nate’s English Journal from tenth grade. Every Friday, he’d jot down at least three paragraphs. One had to cover something he learned at school, another had to discuss what he was reading and the third could be about anything.

It’s a revealing piece, and a great primary source. After reading through his old-school, handwritten, blog-like posts, I was hit by the amazing steadiness of Nate’s teachers at Cooperstown High School. They stuck with him at all times and, in June 2009, he graduated. Here are a few thing they put up with from 2006-2007.

10/12/2006

At school, I went into Mr. Knauth’s room, but he told me to get out of his classroom. I wasn’t supposed to be in here, because math is my 1st period, but it’s also my home room. I had to wait in the hall for Mrs. Weir (Nate’s long time aide), but I stayed in and said if he tells me to stop, I would kill him. After that, I was sent to the principal’s office. I learned not to be bad at school.

10/18/2006

This week I learned the rules of dodgeball in the gym. The rules included throwing the ball at somebody else. Then, if the person catches it, the thrower is out. If the person doesnt’ catch it, he’s out. I tried to do my best at dodgeball, and it worked out well. Here’s a funny story. Yesterday in gym during dodgeball, I took a skateboard and threw a ball at the gym teacher, but he was angry at me and didn’t think it was funny.

12/14/2006

This week, I went to gym and learned how to kick the ball. I kicked the ball, but kicked other students’ legs. I was told not to do that anymore.

12/21/2006

Today, I went to gym and played badminton. In one round, I hit the birdie high, but it was stuck on the ceiling. I had to get another one, and it was funny. I decided to hit the birdie on something else, including the gym teacher.

4/26/2007

Yesterday, I went to math class and did my work. Ms Weir told me to stop mumbling, but I yelled loudly, and I was sent to the office. I’m not allowed to do that anywhere, except at home.

True enough, Nate can always get away with wilder behavior at home than at school. It’s good to know that even when he lost it in class, his support team didn’t give up on him. They deserve much credit for his success.