Saturday, December 22, 2007

I can do this!

Last winter, one of the few bright spots in my life was skiing with MK. We'd just moved to a new city where the teachers had decided to reenact the 1950s, and nearly every day in their period-piece involved the new kid crying. There were also meetings in which people who had found their Teaching Certificates at the bottom of cereal boxes told us that MK (who had got all As and Bs in his last school) could not be taught in "a classroom setting," and certainly could not be given marks of any sort. He couldn't even be given a gentleman's C in gym, because he "cowered" when people threw balls at him and his teacher was only trained in teaching gym to "normal kids."

I must admit that our adventures in skiing did not start off particularly smoothly. I know that they do offer adaptive lessons for folks with developmental differences, but MK was understandably not up for learning anything from strangers at that point so, after 20 years away from the mountains, I became a ski instructor.

The first day was spent demonstrating that the rope-tow is a stupid invention and discovering that it is possible to slide down a hill on your bottom, even if pieces of fiberglass have been attached to your feet. The next time out we went further afield to a hill that had a magic carpet, which is sort of a flat escalator that you ride on, skis-and-all, so that novice skiers can be moved up the slope in much the same way as travelers are moved between terminals at airports. This was a definite improvement, but it did not change the fact that MK had to negotiate a sloping ice-field on long slippery sticks, using nothing more than the poor coordination and dyspraxia he had inherited from his father. On top of this his "instructor" had no memory of how people actually lean how to ski. What I can tell you is that it is surprisingly difficult to keep one's own balance when locked in a bear-hug with a sliding eleven-year-old.

When we had thoroughly exhausted ourselves, we retreated to the lodge where, having been in unusually close contact with the actual snow for most of the past few hours, we both found ourselves suffering from post-nasal drip. After taking care of my own nose I started walking MK through his paces for this activity. I had to explain about unfolding the Kleenex, positioning it, closing one nostril, blowing, wiping, switching nostrils --- you know the drill. And while I was doing this, with the odd bit of manual intervention, I noticed a girl of about MK's age watching us with her mouth agape. I could read what was written in the thought-bubble over her head: How could it possibly be that this grown boy did not know how to blow his own nose?

Her unspoken question resonated with me, and brought up another one: What kind of idiot tries to teach his son to ski when he has not yet mastered nose blowing?

At that point, I knew in my heart that I should relinquish my unrealistic expectations and stop torturing the boy. But I had said that we would have another crack at it after our hot chocolate, and it would have seemed weird not to do that, so we zipped up and headed back to the magic carpet. As we rode up the hill, I explained the "snowplow" technique in detail -- something I had omitted from our lessons so far -- and pointed out the kids who were making use of it. And that was it. MK got off at the top and snowplowed down. Then we got back on and did it again. By the end of the day we had mastered the chair lift and knew the terrain of two proper green runs.

Over the winter MK grew to be a good fast skier who was fond of jumps and even ventured down some intermediate level blue runs. It became our weekly antidote to school and, as I said, one of the few bright spots in a storm of unexpected difficulties.

Since then, much has changed. The teacher with the teaching style that I associate with straight skirts and beehive hairdos has been replaced with by a bright young man who is more interested in content than form and some very happy aides with wonderfully positive outlooks on life. MK is once again earning good marks in all his subjects and this last week made a batch of Christmas cookies for his classmates. When I asked him if there had been any left over, he replied, "Yes, and I gave them to my other friends -- the ones who are not in my class."

So things are looking pretty rosy, but there was still a special feeling yesterday as we made our first trip back to the slopes this year. We started with an easy slope in the beginners area. MK had been a little nervous and had been going on and on about his poles and how he did not remember what to do with them and how he didn't think he could ski if he had to hold them. But after we got off the chairlift and MK had cut cut his first couple of turns down the hill, he grinned and shouted over to me, "Hey, I can do this!"

For the next five hours we confirmed that this was, in fact, the case, all over the mountain.

Wednesday, December 19, 2007

Yip, yip, yippy!

We did it! The NYU Child Studies Center listened and pulled the campaign. This shows, once again, that we can make change and it does make a difference what we say and do. I think that the Autistic Self Advocacy Network played the key role in this victory and they deserve particular thanks, but I was also amazed at how so many people came together with one voice over this. We should be proud of our community.

Thursday, December 13, 2007

Tick, tick, tick

I still haven't heard back from Dr. Harold S. Koplewicz (Phone: 212-263-6205) about the Ransom Notes advertising campaign for which he bears responsibility. I am going to be charitable (and optimistic) and guess that the reason he has not called me back is not that he is a coward, but that he has been so flooded with letters, calls, emails and petitions, that he could not possibly respond to us all. Let's keep it up. Letting them know this is unacceptable is good, but getting them to pull the campaign before it causes lasting damage has got to be the goal.

Has anyone posted a list of the staff at the NYU Child Study Center? I'm wondering if mailing them would be another way to exert pressure. My guess is that they are all good people and would be sickened by this campaign if they were aware of it.

Monday, December 10, 2007

Ring, ring

I gave:
Dr. Harold S. Koplewicz
Phone: 212-263-6205
a call today.

He was out, but his secretary seemed willing enough to connect me, so maybe I'll get a call back. I want to ask him how I should explain the Ransom Notes poster to my son if he should happen to see it. He's a child psychiatrist, so he should be able to explain the best way to lessen the trauma that reading an add like that would cause. If you know someone on the autism spectrum, why not give Dr. Koplewicz a call so you'll be prepped on how best to help if one of these billboards come into view while you are with that person. If you are on the spectrum yourself, maybe you have some ideas you could share with Dr. Koplewicz, so he'll be ready when people like me call up asking for advice.

Saturday, December 8, 2007

Chance to Change the World

OK, this is it. Your chance to make a difference. I'm talking about the NYU advertising monstrosity. You can read about it here, here or here. You can find out how to take action here. I urge you to do so. In particular, I urge you to telephone the people in question. If you can't do that, fax them. If you are rich, send them a FedEx. Ordinary letters are good too.

Fortunately, we no longer live in NYC, but when I think about how I would explain a poster like that to my son, I get very angry indeed, because I know that there are other parents who will, in fact, have to explain these posters to their autistic kids. The people responsible for need to hear from everyone, now.

I also encourage you to make this a subject of your own blog post.

Friday, December 7, 2007

It Just Came Out

Recently MK is more fully able to explain what he is thinking, but some things that he says just don't make sense, and when I ask about them he tends to get quite upset and say, "It just came out. I don't know why! I wish it wouldn't."

Today I left him in a video game store for a while and, when I came to get him, I came up from behind and put my hand on his shoulder.

"Sorry!" he blurted.

"What are you saying sorry for?"

"I'm not sorry for anything. It just came out!"

This was really bugging him, so I explained that it wasn't that unusual to find ourselves saying things that don't reflect what we want to say. I also mentioned that it happens quite a lot to lots of very smart autistic people. So we decided that, whenever that happens from now on, MK will just have to say, "It just came out," and we will both know what it means without him having to explain any further and we'll just completely forget it and move on.

We've tried it out two or three times since then and it's working smoothly so far.

Friday, November 30, 2007

What do you tell a newly hatched curebie?

That's not a rhetorical question, suggestions would be very much appreciated.

Here's the thing. I'm in this group for parents of kids with autism. It's a small group and everyone in it is really great in terms of attitudes. Recently there is a new person who has not actually shown up for a meeting but who has been posting links to things she's discovered on the email list. You can see her progression as she has posted links to various trashy books, then more and more biomed stuff and then a link to Generation Rescue. At that point I had to speak up and point out that there are risks, including death, associated with the treatments promoted with that website. At that point another new person chimed in an said that, as far as she knew, only one child had been killed by chelation and that thousands of kids did it safely every year.

I could, of course, go ballistic on these guys and, while I'm at it, bring up the whole issue of the gross disrespect that the curebies they are so impressed by show towards autistic people. The thing thing is though, that I don't want to scare them off. They are new to the whole business and they are optimistically exploring an avenue that gives them hope. If I point out, even if ever so politely, that they path they are wandering down is dangerous and evil, they will probably just leave the group. On the other hand, if I sit quiet, other new members in the group may end up following the "great finds" that this person keeps sharing. They may even get the impression that the group as a whole endorses that kind of thing (silence is consent, don't you know).

I have probably completely alienated this particular individual anyway, by pointing out the risk of death thing, but the situation is going to present itself again, and I want to have policy for dealing with it. I see it as a kind of a, "Do we negotiate with North Korea?" type dilemma but perhaps there are some simple (or complex) answers that I am overlooking.

Does anyone have any ideas?

Tuesday, November 27, 2007

Faster and Faster

That's how the language thing is going for MK. For a while after he had a very rapid advance in his rate of language acquisition, it seemed to slow down. In fact, it did slow down. But some other things started happening.

First, he began accepting questions about things that he said. It used to be that if MK said something and I asked him for extra details, or clarification or anything of that sort, the response would be a shouted, "I said, (insert whatever it what he just said, repeated verbatim)!" That's if I was lucky. A grunt of frustration and an end to the conversation was equally common, if not more so. But a month or so ago MK suddenly started answering these questions with the information requested. It's really quite disconcerting. I keep asking questions and waiting for the shout, and it doesn't come. I just find out what MK means and the conversation goes forward. Odd. There is almost no guess work required on my part. It almost take the sport out of it.

More recently, he has even started lacing his speech with extra information before it is asked for. He goes forward, pauses, fills in back-story or explains who the protagonists are, just at the point where the information becomes necessary. It's real-time theory of mind based discourse. It's kind of cool.

In the past few weeks the vocabulary has been shooting up again with daily double-digit gains. Also, there is this thing where, if you explain a new word once, he just remembers it. I've got to tell you, that is extremely convenient.

That's not to say that we are without linguistic hiccups. Yesterday, when I asked him if he know what the fives senses were, he answered, "Of course! A nickel." Irregular and intransitive verbs are still a bit irregular and intransigent. And just because MK is developing an ordinary style of discourse, that does not mean that topics of conversation have followed suit. We are still told repeatedly about the statistics for death an injury in amusement parks around the globe, for example. (Globally speaking, they are up in 2007 over 2006, in case you were wondering.) And sometimes, it just breaks down and the whole communication through speech thing doesn't work for a while. I know from my friends on the Autism Hub that this is no big deal. We just drop it and hang out. I'm always up for that.

Tuesday, November 20, 2007

Cures in Perspective

I was at a parent meeting today and one of the people there had recently moved to Canada from China. She was new to everything in the North American autism scene and, when the term "biomedical" came up someone had to explain what it meant.

She dismissed it, saying that in China there were an unlimited number of treatments and cures available but she had never availed herself of them because she didn't want to put her son though all of that when there was a good chance that they would not work.

The sorts of treatments she was referring to were, of course, traditional Chinese medicines but I realized that these were essentially the same as the detoxifying foot baths, complex diets and drugs that we call "biomedical autism treatments." Both are folk medicines, directed at people with little knowledge of science and supported by anecdotal reports from satisfied patients.

For some time now it has seemed to me that there was something futile in the battle to convince the biomed crowd with evidence and logic. Looking at the movement in this light -- as a folk medicine movement -- the futility of this attempt appears even more apparent.

Monday, November 5, 2007

This is Sparta

What MK likes to do is edit videos. He would happily spend 16 hours a day huddled before the computer watching and producing YouTube Poop. He chops up scenes from his favorite cartoons and from games, and rearranges them to make something new. Most of it is extremely repetitive (big surprise there) and sometimes hard for me to fully appreciate (apparently not so for his peers, as the videos he has made have had 75,000 views on YouTube in the past six months). He did one yesterday that I particularly like. I think it's the kind of 80s technopop sound that make it accessible to me. It is, it seems, a riff on another video montage to the same music, but I like MK's version better than the original.

By the way, you definitely want the sound on for this one, but the volume is set a little high, so if you are at work, you may want to have your hand on the volume control.

Tuesday, October 30, 2007

Illusion Explained

Sorry to have left this picture up here without any explanation. I was just using the blog as a bulletin board to tack it up. It was the follow up to comments I made on Whose Planet Is It Anyway. You see, my esteemed fellow blogger, the Autistic Bitch From Hell, posted a link to an article about moving version of this. The article said that the dancer spun in one direction for some people and in the opposite direction for others.

The thing is that, when I watched it, it spun first in one direction and then in the other. The timing seemed random. Looking at the comments on the main article, I noticed that I was not the only person to have spotted the truth. It was, in fact, quite clearly spinning in both directions with a random timer determining when the direction would shift. Gullible people would see it moving in one or the other direction and think that, because different people saw it at different times, there was some kind of weird perceptual thing going on, when in reality it was just a bit of cleaver programing.

I was so convinced of this -- after all, I had seen it with my own eyes -- that I posted a comment to that effect. Then it occurred to me to take it apart and find out how the trick worked. So I did.

It turns out that there was no trick. It's an animated gif that presents a 36 image sequence in the same order each time. The still bellow is one of the images. My brain just happens to processes that sequence as moving in both directions, and just happens to reverse the direction it thinks it is moving in every few seconds, in a way that looks random.

What is really fascinating about this is how absolutely sure I was of the veracity of what I saw. It did not fit with the explanation I had been given and, say what you like, I had seen it with my own eyes.

You know what this reminded me of? MK's teacher from last year. She'd seen what she had seen, and you could talk until you were blue in the face, she had incontrovertible evidence in the form of her own observations that things could not be as MK's parents claimed.

The next time I set out to educate someone, I'm going to try to keep in mind that seeing is believing.

Monday, October 29, 2007

I don't usually do this but....

You've got to read this post!

This entry in chaoticidealism's Reports from a Resident Alien says so much of what needs to be said so well, including this wonderful aside:

"(Digression, but what's so important about a "normal life" anyway? The President doesn't have one; neither does the bum on the street corner; neither did Beethoven or Luther or Joan of Arc. I don't have a normal life; but why would you want a normal life? Go to school, get married, work, have 2.5 kids, retire, and die. How is that any better than any other life, simply because more people, at least in America, live like that than any other way?)"

Go enjoy it, if you haven't already.

Tuesday, October 23, 2007

Who is running the Hub?

Does anyone know? I know Kevin has turned it over to someone, but I don't know who. I've never been able to find any contact information on the Autism Hub site itself. I wanted to point out to whoever is running it that The Beach on Autism Island has been hijacked by a porn site, which is probably not the kind of content that the Hub wants people being directed to. Any ideas about who to write to?

Sunday, October 7, 2007

What's in a name?

Learning the names of the kids in his class was a big challenge for MK last year. They don't take attendance at the beginning of each day in this school, so name learning is harder than it was at his old school. At last year's IEP meeting MK's aid suggested that this year, she take pictures of everyone in the class so that MK could work on learning their names.

She did that and then, at home, we printed the pictures out and made flash cards out of them. The actual memorization took quiet a while. MK is good at memorization (go ahead and ask him any fact contained in the Pokedex if you don't believe me) but he has an aversion of deliberately learning things. He considers it unnatural -- like a sort of violation of his head space. Apparently, it's one thing for knowledge to appear in your head in a natural manner, but another to try and force it in. I can kind of see where he is coming from, but this is one of those cases where I take the very nuanced parental approach of, "Oh, yeah. Tough." Actually, in this case, I bribed him. A couple of weeks later he learned the names that go with all 30 pictures and received his bribe.

This has been really good in terms of talking about what goes on at school. It is also our theory that it will: i) make it easier for him to think about his classmates as individuals, which hopefully will ii) make him more likely to treat them as individuals, which in turn would iii) predispose his classmates to treating MK like an individual.

It seems to be working out. The other day at MacDonald's we bumped into three people from his school. He greeted each of them by name, even though only two were in his class (so knowing the third kid's name was a bonus). Tonight, we met yet another classmate at the video store and, once again MK responded to "Hi, MK," with "Hi, XX." He then went even further by actually asking the kid what movie he was getting. The appropriateness of it blew me away. The other thing that really impressed me was that, while MK asked this question with his back turned to XX (as he is wont to do), XX not only answered, but didn't seem to mind having an exchange with the back of MK's head. Looks like we may be having some iii) going on already.

Thursday, October 4, 2007

Late Bloomers, Loners and Sensitive Types

When was the last time you heard one of those expressions used? These words from my childhood seem to have disappeared from the language and been replaced by various medical terms. Jitterbugs, handfuls and dreamers have all been replaced by ADHD cases. Rowdy kids who talk back now have oppositional defiant disorder. One reads about three year olds being diagnosed with social functioning levels equal to 1 year and 8 months. What outstanding accuracy! How precisely we have come to understand human development. The path that leads to (presumably homogeneous) adulthood has been drawn so narrowly that any child who does not march straight down the statistical center is plastered with labels.

In my son's class last year, the teacher confided that there were three kids with diagnoses and five more that needed to have diagnoses, but hadn't got them yet. That is to say that eight out of thirty (about a quarter) of the kids had pathological developmental disorders. I went on field trips with these kids, and I can assure you that none of them seemed any different from the kids I went to school with. Some were goofy, some were quiet and some you had to keep your eye on -- in other words, it was a group of thirty children.

In a meeting with some people from the PTA and the Vice Principal, we discussed "gray area" kids. I'd never heard of the problem before, but everyone was very worried about it. It seems that about 30% of the kids would not actually qualify for diagnosis under today's standards, and yet are failing to keep up academically and socially. The horror! No matter which way I crunched the numbers, the truth was inescapable -- nearly half the kids were bellow average! Whatever are we going to do?

Please excuse the rant. And, no, the next thing I say is not going to be, "All these kids need is a good old fashioned spanking." What set me writing about this was all the brouhaha over the fact that Jenny McCarthey's son, who was not developing typically when he was two (he was having epileptic seizures) was developing more typically at the ripe old age of four. We are told that, in that two year span, the young gentleman had autism and then was cured from it. How exciting.

Diagnostic labels have their uses. They help get access to services. They can predispose some people to acceptance and accommodation, instead of judgment. In some cases they can be useful in terms of giving an indication of what sort of help is likely to be useful. But these sorts of labels also present problems. First, unlike the folk-labels in the title of this post, they narrow the boundaries of what we are willing to consider as natural variation. What was once considered acceptable and even welcomed in the general community tends to be seen as something that, being pathological, requires correction. It also takes away our confidence in our children's ability to work things out as a natural part of growing up.

Recently, at a support group for parents of autistic kids I mentioned how MK still did not speak in proper sentences at age six. A parent asked me how he went from being non-verbal to his current verbal state. My answer was that he was never non-verbal, he just didn't know how to talk, and that this had changed as he learned how to talk. Of course we did what we could to help, but the bottom line is that, as a natural part of growing up, he has got better at things that were difficult for him earlier on. Kids do that.

It's very nice when a late bloomer does well but, by calling it a miraculous cure, we raise the stress levels for all the other kids who are taking their time. It's a good thing for loners to get some support in making friends, if they want it, but do we have to tell them they have a disorder before we are willing to help out? Likewise, sensitive types will benefit just as much from activities that promote sensory integration, such as swinging, swimming and bouncing on a trampoline, whether we refer to it as therapy or just getting out there.

We've come a long way from the days when intervention was limited to curt demands that kids snap out of it and quit acting up. Hopefully, as we move forward, we can drop the notion that everything that benefits from help and understanding first has to be considered pathological.

Sunday, September 30, 2007

Music to My Ears

I don't often listen to music because, although I really like music, I can't do anything else very well when it is on in the background. So, for me, listening to music is only possible when I am relaxed enough to sit around doing nothing but listening. After my last meeting with MK's teacher, I suddenly find myself very relaxed. So I set up an iTunes account and started downloading. I got a lot of stuff by David Byrne. He's pretty well my all time favorite musician. (I once saw him perform with just an acoustic guitar in a small church in Brooklyn -- major high point in my life.)

Anyway, listening to his stuff this time, I remembered that I had heard about him being on the spectrum. So I Googled that and I came up with this video by Christschool. You've got to watch the interview at the end. The cadence and logical/narrative structure is soooooo familiar to me. It is any surprise that I like this man's art?

Thursday, September 27, 2007

More Good News

In October we are going to Japan (that's good news, but it's not the good news I'm talking about). The thing about that is that it comes right when fall IEPs are usually scheduled. So I went into the school today to ask various people whether they wanted to schedule the IEP before or after our trip. The VP and the Resource Coordinator felt that things were going really well, so there was no rush and we might as well have it afterwards.

I was OK with that, but I had one reservation. Last year, MK's teachers had refused to give him letter grades in anything but math, and I do not intend to allow that to continue. I particularly did not want to let the IEP meeting slide and find out at the meeting that this year's teacher also wanted to withhold letter grades. I have lined up a legal challenge to use if the school tries that again, but these things take time to implement, so if I was going to be getting a lawyer, I wanted lead time.

So I went to the teacher and asked what he thought about the timing, saying that, if he didn't think MK was keeping up academically then we should have the IEP meeting earlier rather than later, but if he thought MK was more or less keeping up (which, by definition means eligible for letter grades) we could schedule the IEP later.

Imagine my surprise to hear the teacher say that he wanted the IEP meeting sooner, rather than later, not because MK wasn't keeping up, but because he was completely up to speed in all areas, his behavior was really good, he is happy and engaged in class, and last year's IEP doesn't cut it anymore because he's doing so much better than that. (To quote Sweet M, who was herself quoting Austin Powers) Oh yeah, baby, that's what I'm talking about!

As I have blogged, MK has made great progress recently and is doing better in general, but he's still a particularly unique young man with a number of challenges. The big difference is that this year he has got a teacher who doesn't mind the "inappropriate" questions, or the unusual postures, gestures and facial expressions that his teachers complained about so much last year. He's eager to look at what MK can do, instead of obsessing on what he can't do, or what he does differently. And that's all it takes. It's just takes an open mind (... that and the one-to-one aide that MK has this year, but let's not start talking about details that might detract from an otherwise highly poetic argument).

Monday, September 24, 2007

Sixteen Bits

Kristina, over at Autism Vox, once asked how are you and your autie alike. I had a bunch of things to say about that. But there is one way in which we are different.

MK is required to eat two or three mouthfuls of vegetables at each meal. On days other than the days on which carrots are served, these naturally fall into the category of foods that MK really hates. There used not to be any hope of getting him to eat from a plate that had been contaminated by non-approved foodstuff, but MK is growing up and will now try just about anything on request (he doesn't always succeed in swallowing, but he does try). MK always leaves these veggies until last. Not me. I leave the yummiest morsel to the end. I always want the meal to end on a high note. And I am no different when in comes to reading.

Every day, I read the blogs on Autism Hub and everyday I leave Whitterer on Autism to the end. I know I'll be left with the fine aftertaste of particularly good writing and a positive attitude. So, when Mcewen herself tagged me for the Eight Random Things meme this week, the last thing I wanted to do was to risk looking unappreciative by replying with the cold and boring truth that I did, in fact, already post one such octet back in July. Having reviewed the rules, I see there is nothing against repeat performances. Nonetheless, knowing that --lacking star power-- my own re-tagging of previously tagged people is unlikely to be met with much indulgence, I have decided to forgo that part of the meme. So, without further ado, here are eight more things:

1. I don't own a car. I usually rent one on the weekends, but during the week I am a cyclist.
2. I am a political junkie. For example, I had downloaded the Supreme Court Ruling on Bush v. Gore within ten minutes of it being published and sat in bed guzzling it down the way other people might read the last pages of a mystery novel.
3. I don't like team sports, either as a spectator or a participant. (Mostly because I am really bad at them.)
4. The country that I would most like to visit for a holiday is Cambodia.
5. I am exceptionally good at peeling potatoes. When I peel potatoes in public, people gather around to watch. I'm not kidding.
6. More than once, people have turned off sound systems when I have tried singing karaoke.
7. My father taught me how to plow with a horse, fell trees, take care of honey bees, build fires, navigate at sea with a sextant, make candles, catch fish with my hands and all sorts of other things that I never actually need to do -- but I feel confident of my chances of survival if modern civilization were to come to an abrupt end for some reason.
8. My desk is a terrible mess and I loose my reading glasses several times a day.

Sunday, September 23, 2007

Compassion: your mileage may vary

Recently, Joel, whose blog I read regularly and very much like, wrote a post at NTs Are Weird about what should be required of autism advocates that included the statement, "If I laugh at people who don’t exercise, because they are unathletic, I’m also laughing at people who are unathletic for other reasons..." This is an extreme position. By the same logic, I would not be able laugh at a foolish decision made by George Bush because I would also be laughing at people who make foolish decisions due to an intelectual handicap. Similarly, I couldn't titter at old ladies dressed in clashing colors for fear of offending the color blind, or rib friends who invested in condos in Florida in 2006, out of respect for those with dyscalculia. In fact, taken to its logical conclusion I could not even look down on people who look down on other people, because that would be unfair to psychopaths.

Not that there is anything wrong with that.

There is a lot to be said for seeking to act in a way that causes the least offense and the least suffering in others. That's not generally how I hang (for example, see my other blogs:, and but I have plenty of respect for those have chosen that path. The Dali Lama and Jesus come to mind, but there are plenty of ordinary, run-of-the-mill nice, friendly people who live by the same lights. (For that matter, my son is one of them. If I rail at divers engaged in unsafe and illegal maneuvers in the road ahead, he will chime in with, "It's not their fault. They probably just don't know how to drive very well.") I'll be the first to admit that compassion in word, deed and thought makes the world a more pleasant place and does wonders for the general psychological wellbeing of the compassionate themselves. I just don't see the need to tie it to disability. I think that Joel and some other people in the disability rights movement may be hanging too many coats on one peg.

If you are going to be understanding and accommodating of every difference out there, there is no reason to perceive this solely in the framework of disability rights. You can go ahead and just be a really nice guy in general. By the same token, there is no need to see this sort of generalized compassion as a prerequisite for advocating for specific disability rights. I know a quadriplegic fellow who is a very effective advocate for wheelchair access who disses his opponents by saying things like, "Unlike them, my disability is from the neck down." This is very rude to people who have a genuine intelectual disability, but the person in question still gets ramps built. He's just a jerk. That's all. Just as one can be friendly and autistic, or be physically disabled and be athletic, one can also be a disability advocate and a jerk.

People are complex and imperfect, disability advocates are no different.

Monday, September 17, 2007


No, the title is not indicative of my mood, but rather a polite way of expressing what MK has been saying recently.

As recently as March, MK was very upset by swearing. Hearing people swear, and especially children (even on TV) would bring him to tears. I think it might partially have been a cognitive dissonance thing -- if it's against the rules, then why on earth are they doing it?

At the same time, he was fascinated with it, especially as he was hearing more and more of it in the school yard. I myself don't swear often, but not often is not the same thing as never. And I have always explained that swearing is an easy (or even lazy) way to add impact to language and express familiarity.

In his typical way, MK began experimenting by editing videos. He learned from his YouTube Poop colleagues that much fun can be had by taking a perfectly innocent phrase, such as "That's a nice red dress," and adding censor beeps, so it comes out, "That's a nice *beep* dress." MK produced dozens of such videos. There are grammatical and semantic issues in this editing trick, so sometimes his videos sounded natural and funny, and sometimes they made no sense. I gave him feedback and explained some of the theoretical underpinning of four letter words, and he kept experimenting. Within about three months most of the beeped videos made sense.

As he was doing this, MK also began experimenting with actually saying some of these naughty words. I had given him permission to say them around me, as long as no one else was present to be offended. Having never in his life blurted out so much as a single syllable, there is not much risk of him doing so with off-limits vocabulary. There are few people who spend more time weighing their words than my son.

At first he only said them in the car. We would be talking, he would get half-way through a sentence and then stop and ask me to roll up the windows. After a few furtive glances around to make sure there were no lip-readers in nearby cars (or perhaps perched on rooftops or overpasses with binoculars), he would whisper the expletive, ask me if it was grammatically correct, and then sigh like a golfer who has just completed a difficult putt.

By now he's relaxed a lot. He'll come down and watch Jon Stewart with me, just for the hilarity inherent in potty-mouthed newscasters. He has even developed certain amount of panache in his delivery. Yesterday, he asked me what "contemptible corpuscle" meant. I explained a length, covering etiology and implied meaning. He listened to the whole explanation and then said, "So it's basically a stupid f****er."

I'm always amazed by what I end up considering as progress.

Saturday, September 15, 2007

Zoom, Zoom, Zoom

Last week MK's teacher announced a class sleepover in the gym for team-building and fun. Not surprisingly, MK did not like the idea. His aide got him out of the classroom before he started crying, so he didn't loose any street cred, but the idea was pretty frightening for him.

Notwithstanding his legitimate objections (playing with those kids will be hard work, he reminded me) we felt it was a good opportunity get familiar with the other kids and get to know his teacher. In fact, I blogged here, last year, to the effect that the school year should start (rather than finish) with informal social events for the kids. We were also pretty sure he could handle it. His anxiety has been exceptionally low and -- get this-- his aide was going to be there. I think that is amazing! How many school-provided aides volunteer for sleepover duty?

We all told him that we thought he would have a good time and that it would be a good idea for him to go, but that the decision would come from him. We discussed it every day for four days, going over worries and objections and offering vague bribes (oops, I mean incentives). On Sunday he decided to cut a deal and offered to participate in exchange for a much-coveted video game. After that, reluctance turned to enthusiasm, and by the time the day rolled round, he was feeling sorry for the few kids who were not allowed to attend for religious reasons.

He did very well indeed and enjoyed the whole thing with no panic and only a few patches of minor worry. He joined in all the activities and games and came out of it feeling happy and confident.

MK has one friend who he has regular play-dates with now (amazing to think that his first one was just two months ago) and, as it happens, this friend had the same teacher last year, but did not benefit from a start-of-year sleepover. So the friend asked MK to come to a sleep over at his house. MK, who would not even discuss one-hour play dates, six moths ago, said, "Sure, I don't have a problem with that."

That is where he is now. In fact, he has been gone since early afternoon and his mum and I took advantage of the occasion to go and see an excellent movie (This Is England), of the short that we would never be able to see with MK. In a few minutes we are going to a restaurant (Tunisian-French) of the sort that MK would hate. Ah, bliss.

Wednesday, September 12, 2007

Talk Talk

While I'm gushing about MK's new teacher, MK himself is not so impressed. The teacher is passionate about teaching, so he talks, and he talks, and he talks. MK is not impressed by people who engage in too much of his least favorite form of communication. He says that he cannot understand a lot of what he is saying and that he is, "Boring, boring, boring," and makes time go slow. He also tells jokes that MK doesn't get. And there are enough assignments, where the kids get to work. They just have to sit and listen.

We spoke to our SLP today and she suggested that we wait two weeks and see what happens. It could be the novelty that makes the new teacher's voice and speech patterns hard to understand.

I'm pretty sure that MK is going to have a great time with this guy, but I am reminded -- yet again -- that my idea of good and MK's ideas of good aren't always the same. And of course, when it comes to MK's education, what really matters in the end will be MK's ideas, not mine.

We'll see.

I've got to add that this is the first year where we have had this kind of feedback from MK. He has not previously been able to narrate what is going on in class an how he feels about it, so the "Oh dear, he's bored," response is actually outweighed by the "Excellent! He can tell me he's bored," response.

Tuesday, September 11, 2007

I think I can relax

Yup. For the first time since MK started at his new school, I think that I can actually stretch out on the sofa and say, "Everything's fine." We met the new teacher today. He is a relaxed, innovative guy who doesn't believe in homework and seems much more interested in teaching students how to reach specific educational goals than in having them conform behaviorally. In his comments on MK's first week in class, he had nothing but positive things to say.

MK now has two aides: one for the morning and one for the afternoon. The afternoon aide we already knew was very good. I met the morning aide today, and she seems intelligent, organized and kind.

It's like some fairy has waved a wand and transformed it into a different school, one in which people want MK to succeed, and have the good sense and flexibility to help him do it.

Maybe this a "pink cloud" and we will be pulled up short in a few weeks, but I'm going to enjoy it anyway. The last time that things looked this good at the beginning of the year, the whole year was a roaring success. Who knows, maybe it will happen again.

Tuesday, September 4, 2007

Looking Good

We have been told many good things about MK's new teacher, but we have never actually met him, so we have our fingers crossed. There was also the possibility that he might have fallen under a bus over the summer holidays, to be replaced by some unthinking, unfeeling schoolmarm. That has not happened. And while MK only met with his teacher briefly today, he is off to a very good start -- he asked MK to help as a math tutor for kids who find math difficult. MK came back bursting with pride, which is an excellent way to start a school year.

Friday, August 24, 2007

Cleared for Take Off

Last year at this time we had just moved to Canada from NYC where MK had been doing very well in school. He had made friends who came over for spontaneous play dates, he felt confident and happy and his report card was all As and Bs.

In my naivety I assumed that this would mean relatively smooth sailing into his new school. The kids would surely be more gentle and easy going than the little New Yorkers, so MK should fit in without too much trouble. My fellow Canadians cared less about grade school academics than Americans did and, as they have no real practice of standardized measurement, they had more room to be flexible. What, I would have asked --if I had even thought to ask-- could possibly go wrong?

I could write thousands of words in answer to that question now, but the short version is: Being comfortable in one social situation does not equal being comfortable in all social situations. Children from smaller, less sophisticated urban centers are not --surprise, surprise-- always as tolerant and inclusive as their big-city counterparts. And above all, having a flexible teaching system is only of any use if you have good teachers. With no formal curriculum or standards, teachers base their evaluations and their teaching on gut feeling and, without training, gut feelings about kids on the spectrum can be extremely misleading. Another thing that I found out was that some people outside New York City don't actually have a very high opinion of it. (When the school informed us that MKs report cards and the results of his statewide tests from New York would not be taken into consideration in trying to get a handle on his overall academic competence, it was made clear to us that the wackiness of NYC made it impossible to take seriously.)

The upshot was that the kids generally shunned him and gave him a hard time, while the teachers assumed, based on his odd way of talking, his nervousness, his unusual questions and his tendency to cry when scared or frustrated, that he was incapable of keeping up academically. They then basically stopped teaching him and stopped expecting him to do things. Naturally, being marginalized by the teachers did nothing to improve MK's social standing or confidence.

At the end of the year, MK was given a report card with asterisks instead of marks in all subjects but math (math being to only subject where they used tests and MK never getting less than 80% on a test, it was harder for them withhold marks purely on the basis of social prejudice). But I am hopeful that this will change next year and MK will be given the chance to participate and receive marks just like any other kid.

That said, with little more than a week until school starts again I am actually feeling optimistic.

The first reason for hope is that we now have ground work and have established our credentials as the sort of people that you ignore at your peril. By the end of last year we had jumped through an enormous number of hoops. We had MK re-evaluated and re-labeled by local folks. I joined a local autism parents group and was coached on what to demand and who to pester at the Board of Ed. We finally got an IEP meeting with less than a month of classes left, to which we dragged a psychologist to testify that MK was neither stupid nor crazy. We also had to advocates from the Developmental Disabilities Association, who had coached me before the meeting on what to expect, and who played the role of polite but not-to-be-messed-with enforcers, both at the meeting and in follow up calls to the school. Although very little was actually decided at the IEP other than the fact that MK now has a half-time aide assigned, we did not loose any ground. By which I mean that the views of his poorly educated, ignorant and unthinking teachers, who would have liked to have his curriculum "modified," which is to say, who would have like to stop teaching him on a permanent basis, were not accepted.

The second reason for hope is his teacher for next year who, by all accounts, is supposed to be the best in the school. He is only four years out of university so, not only is he not burned out, but he may actually have spent an hour or two studying how to teach neurodeviant kids. He is also said to make excellent personal connections with his students, which may mean that he takes the time to notice what MK does and does not understand.

The next reason for hope is the aide. For the last weeks of last year, MK was given a smart and nurturing aide, who, amongst other things, maintained a Home-School Communication Notebook with us every day. MK's biggest challenge in the classroom is figuring out expectations, both academically and socially. Having an aide to make implicit expectations explicit should help a lot.

Although the schools here do not believe in standardized measurement, the federal goverment does have standardized tests for Math and English. (The school is required by law to administer the tests, but has an official policy of ignoring the results.) When MK took these earlier, he tested above grade level in math, but about a year and a half behind in English. That is not actually an earth-shattering delay, especially considering that they teach different curricula in Canada and the US, but it was enough to support the teacher's claims that he was behind, which in turn supported thier contention that he was unteachable. This week, however, MK redid his federal test and is now testing at grade level in English. Hopefully, with locally administered tests showing the MK is a kid of normal intelligence and performing at or above grade level in all measured subjects, his teacher will not insist on withholding academic instruction and marking this year.

On the social front, we are also making major progress. The rejection, shunning and teasing that MK got early on at school made him totally unwilling to risk more of it. He completely lost interest in his peers. With quite a bit of work on this end, and the very useful suggestions of MK's new aide as to who might be up for a play date, MK has some friends. I have to admit that he is not exactly enthusiastic about his peers, and generally needs a fair bit of cajoling before meeting with them, but last night he had fun at a birthday party and as I type this, he is over at another friend's house and has not yet called asking to be picked up early. If one or more of these boys ends up in his class next year, things will be much easier, and just having a few people in the school who you can consider as friends has got to be reassuring.

On top of it, MK has achieved a number of personal accomplishments over the past year. He has learned to be a good downhill skier. He setting high scores on the DDR machines in the local arcades. He taught himself video editing and has an impressive number of fans and subscribers on YouTube. All that has to raise his self confidence, which should in turn lower his socal anxiety.

All this is not to say that there will not be any challenges. Consider the conversation MK and I has this morning when he came down with his polo shirt both inside-out and back-to-front.
Go take a look in the mirror and see if you can see anything that needs fixing.
(Looking in the mirror) Hmmm, is my underwear showing?
Can you see you underwear?
Then it is not showing. Look at you neck. Do you see anything odd.
Touch your neck.
(Touches armpit.)
That's not your neck. That's your armpit.
(Poking at his armpit with conviction) This is my neck!
Your neck is the thing that connects you head and your body.
(Taps his shoulder.)
That is your shoulder. Your neck is the part of your body that includes your throat.
(Touches his throat.)
Now look in the mirror. Do you see anything odd about your shirt there?
(Looking carefully) No.
So, in short, while there is still reason to suspect that MK's school year is not going to be entirely free of challenges, there is also reason to hope that it will be more like his grade four year than his grade five year.

Saturday, August 18, 2007

Accept or Overcome

Reading the Autistic Bitch From Hell, who I find to be perhaps the word's most reasonable and good natured commentator on the subject of autism, prompted me to write a few words about accepting differences. ABFH's post is about how silly it would be to take a grieving/acceptance approach to the models that psychologists and other professionals use to explain wiring differences. It's a great post, so I'll let you read it rather than trying to paraphrase it myself.

A somewhat different question is how neurodeviant kids can accept the individual circumstances of their own wiring. I say kids because, by the time we have grown up, we hopefully all know that everyone is their own person and there is little to be desired in being the same as everyone else. For some reason, however, this is not obvious to the under-sixteen set.

MK has recently been complaining about what his brain can and can't do. He talks about being mad at his brain. He says, "I wanted to, and I told my brain to do it, but my brain didn't do it." This particularly comes up in relation to medium-term memory, attention and word retrieval. It is frustrating for him to see something done by other people, apparently with ease, that simply doesn't work for him.

At the grizzled age of 44, it seems obvious to me that everyone one has varying cognitive and physical strengths and weaknesses, and that success lies in knowing your own, and those of people around you, and then using that knowledge to your advantage. For example, like MK, I misplace things all the time. Unlike MK I have specific spots where I place important things like keys, so that I will know where they are, I schedule an extra five minutes for finding things before leaving the house, and when I can't find something for all that, I take it as an inconvenience on the same sort of level as bad weather. While MK sees this kind of approach as being fine for his father, he expects better for, and from, himself.

Part of this is cultural. Kids exist in a culture where everything is expected of them. For instance, I'm not very good at math. My response is to hire a bookkeeper. If I were a kid, that option would not be on the table -- especially not during math class. (MK is very good at math, as it happens, but the principle is the same.)

The other thing is developmental. Kids are constantly gaining new skills. Often, skills will come on line as a strength that no one would ever have expected. So it's reasonable for kids to try things and hope that they will just be good at them, even if they weren't particularly good at them the last time they tried.

In other words, for kids, accepting one's differences and finding a work around, or putting those sort of tasks on the back burner so as to concentrate on one's strengths, is not always possible and may not even be well advised. For kids who are wired differently than many of their peers, the ever-shifting balancing act is particularly challenging and, for their parents, giving advice is not so easy.

Wednesday, August 8, 2007

Where we are at with language

I just thought I might post an update on MKs language advances because I went on and on about it a few months ago and, if I were reading this, I'd be curious to know if it was flash in the pan or if it panned out. Also, I was reading about sudden leaps forward on Estee, Kevin and Susan's blogs, which put me in mind of it.

Basically the speed at which MK is advancing in terms of vocabulary acquisition has slowed down, so I am noticing a couple of new words or expressions a day, rather than dozens. On the other hand, the sudden ability to pick up and retain new words that he is specifically taught seems to be sticking and strengthening. There are still a lot of gaps. Tonight, in a sentence beginning "It depends on the circumstances," and including the words "graffiti" and "arrested" he was at a loss for the word "wall," and tried "that wallpaper place" before pointing to a wall and asking, "what's this thing called?"

This business of wanting to know what things are called is actually quite new. Today also he asked me (referring to a peer who had a particularly spectacular melt-down), "Why do we say, 'flip out'?" That idiom "why do we" and particularly the "we" in "why do we say" was particularly encouraging to hear. For one thing, it's metalinguistic exploration of the most useful sort, and for another, it implies a level of self-inclusion that I don't usually see from MK when it comes to language.

The ability to recount events in the recent past has stayed and is getting better. A noticeable change is that he has started cluing people in on the background of things that he says. For example, when describing a some particularly awesome victory, he said "Mario was on red (that means he had one HP left) and I..." Likewise, we got "There is this video I was watching, and when you play it backwards it is really funny because it sounds like ..." We never used to get explanatory parenthetical asides or scene-setting introductions.

It's interesting because, if I looked at this latest development in isolation, I would be tempted to say it represents an advance in theory of mind. But somehow I don't buy that. Theory of mind does not develop in a matter of weeks. I think it's just down to language. He's got enough spare processing power while recounting something to be able to think about what other people know in real time, and he's got the linguistic facility to be able to bring up the phrases that add the extra information without loosing track of his narrative.

So in any case, the update is: slowing down, strengthening, morphing into different things but by no means ephemeral. As evidence of this, today we on a bus engrossed in a long, wide ranging conversation and, when we came to a pause, I had to ask, "What were we talking about?"

"Changing the laws in Japan after the war," prompted MK.

"Yes, but what were we talking about before that," I wanted to know. "How did we get here?"

In fact, we got there from talking about the destruction of infrastructure in Japan in WWII, which we got to from talking about atom bombs, which we got to through talking about war as a downward pressure on population, which we got to through discussing world population growth, which we got to through talking about which was the biggest city in the world.

When you can get lost in conversation like that, you know you are doing OK.

Sunday, August 5, 2007

Speaking Truth to Power

Today was a day planned by MKs mother. First we went to the Gay Pride parade (MK's mom is totally into parades, while MK and I are lukewarm towards them) then we walked across town to a particular Japanese restaurant that we adults love but, once again, MK is not too hot on. Basically, MK was getting dragged around by his parents and it wasn't much fun for him.

On the way to the Japanese restaurant, MK got it into his head that we should go to Denny's. I hate Denny's and, while we are willing to take MK there as a special treat from time to time, we weren't going to give up on our planned lunch and switch to Denny's, no matter much MK insisted. To tell the truth, I though he was being uncharacteristically unreasonable, especially when we got to the Japanese restaurant and he started to cry. So I asked, him, "Why on earth are you making such a big deal about the idea of going to Denny's that you just thought up a few minutes ago?"

Then he laid it on the line. "I feel less powerful than you," he said. Wow. Now that's plain talking. That's someone who is twelve years old and starting to come into their own.

It took quite a bit of discussion before we hit on the compromise. It was MK's idea. We adults ate our Japanese lunch. Then we all walked down to Denny's where we dropped MK off to order and eat lunch on his own while the grown ups got some coffee nearby. When we came back to take care of the bill (we were going to let him do that too, but the idea of working out the tip got him a bit flustered) we found a very happy camper, who now felt at least as powerful as everybody else.

Saturday, August 4, 2007


Reading DoC over at Autism Street, I had Curbies brought up to the front of my conscious again. I've never actually met a Curebie (a person who wants to 'cure' autistic people -- which is to say, make them neurotypical -- by some sort of "biomedical" intervention). I've bumped into the writing of a psychotic individual who goes by the name of ForeSam in the blogosphere, but that is as close as I have come to it.

Sometimes it seems very odd to me how much energy the neurodiversity crowd pumps into arguing against the positions of Curebies. The thing is that the arguments made by the Curebies don't make any sort of sense. It's all flat earth gobbledygook of the sort that doesn't warrant serious discussion.

The other thing that is weird is watching the videos of the people who have been "cured." These folks look as autistic as all get out me. Which makes me wonder why, if the parents are happy to have an autistic child, they bother to pump them full of malt vinegar (or whatever it is) in the first place. I imagine that the cured kids in question had more difficulties at one point and now have less difficulties, but if the parents left out the "curing" part they would have the same kid, and they would get to feel all sorts of pride in the progress that their kid made, rather than owing it all to some quack.

It's a weird world out there and hopefully I'll never get more familiar with it.

Thursday, August 2, 2007

Hand-Eye Coordination: it's not what you think

Different people have different takes on MK's eye contact. In past assessments it has come up as an issue, his teachers have listed it as an issue, and I have always felt it was an issue, but his psychologist does not think it is in any way underdeveloped and his tutors point out how good it is.

Recently, I've come to see that this issue is not eye contact per se, but eye to hand contact. The thing is that some things get explained by hand gestures. We say, "It moves like this," "It was about this big," "The road is really flat, then it goes up and down," "You need to put the string all the way around the outside," etc. Sometimes there are verbal cues that suggest the person we are speaking to should look at our hands, but on other occasions, we cue people to look at our hands only by looking at them ourselves. This is what MK does not get.

We will be having a conversation, and we will get to one of these hand gesture places, and MK won't look. I will do some sort of thing with my eyes (I'm not sure what it is, because I can't see my own eyes) which would cause another person to look at my hands, and MK will not respond. It makes me want to say, "Look at me," or "Look at my eyes," (those are the phrases that jump into my head) but what I should be saying is "Look at my hands."

Following on this line of thought, I notice that MK himself very rarely uses his own hands to communicate. This ties in to something Bev was saying. She mentioned that it was frustrating not knowing how to non-verbally indicate that she wanted the floor in a conversation. Analyzing my own behavior, I think it is largely down to hand gestures.

I wonder to what extent reading and using informal hand gestures is difficult for folks on the spectrum other than MK.

Tuesday, July 31, 2007

Dissing dissbility

Recently MK has been talking a lot about how he does not see autism as a disability. His argument is that, because it doesn't cause any problems, it cannot be a disability. Basically, he's saying, "I'm OK, Jack!" And of course he is right. He is OK. There is nothing wrong with him.

On the other hand, it is an interesting question. The government in these parts shells out 22K more each year for his education than it does for the education of his classmates. He has an IEP and a classroom aide, and we expect the teachers to adapt programs to suit his needs. As he grows older, it is likely that he will continue to benefit from some adaptations. In the world we live in, it's hard to request adaptations with the justification of a disability. I wonder how this might effect MK's self image.

For my part, I am able to recognize my disabilities and I don't feel that they make me any less of a wonderful and modest person. MK does not seem to be able to accept his own mix of disabilities and abilities in that way. I read the adult autistic bloggers on the Hub and I get some idea of attitudes that can be taken to specific autism issues, but I don't yet see how I can pitch any of these attitudes to MK.

Of course, MK may not ever come to accept his differences as disabilities. There are people who do not accept their own limitations, and struggle (both successfully and unsuccessfully) to eliminate them. I think it results in a rather flat personhood but ultimately, it's going to be his call.

Sunday, July 22, 2007

Special Parenting?

A while back, Along the Spectrum said, parenting is not that different. I loved that post (as I do most of the posts on that blog). It struck a true cord. What parents of exceptional children do is just plain old parenting, even if there is a bit more of it – or a lot more of it as the case may be. The other day, Joey's Mom said that people should be out there telling parents not to be afraid of having kids with special needs. Good point. After all, we get into the whole reproduction thing, not because we want the end product (adults), but because we want to enjoy the process of being a parent. So, given that you want to parent, which is to say that you either like parenting or you think that you are going to like parenting, it doesn't make any sense at all to be afraid of the dice roll bringing you more parenting.

That said, in the opinion of one dad, over at One Dad's Opinion, parents of an autistic child have to make determinations every day as to, "At what point does our responsibility as a parent become overshadowed by our child's ability to behave a certain way?" This introduces what is for me a difficult question, when do we make allowances, accommodate needs that we might like to see our children go beyond, or even actively embrace and encourage behaviors that we might try to limit in other children? To get a better idea of what I am talking about, you should read Steve's whole post, and then come back here.

When trying to sort out what I think about all of this, my thoughts are also influenced by people such as Mom26children at What are they thinking? who said, recently,

Just because you have an Autistic child does not give them free reign to disturb others in a public situation. If that was the case, we could allow any person to disrupt any situation.
If you want your Autistic children to be taken seriously, you must take your Autistic child seriously.

How can we prepare our Autistic children for their future and being accepted by society if we allow them, as children, to act inappropriately in public?

Just because your child was given the diagnosis of Autism does not mean you have to stop parenting your child....

Another parent of an autistic kid who blogs in a similar vein is BeAGoodDad, over at Be A Good Dad, who says, "Raise your child like he is your child whether he has a special need or not."

This brings up another kind of question. You see, whether we should accept and accommodate differences in our children or attempt to bring our children in line with our own preconceived expectations is intimately tied up in what we see as the role of the parent, regardless of whether the child has special needs.

Specifically, some parents see it as their incontrovertible responsibility to impart to their children the morals, standards of behavior, habits, attitudes, knowledge and wisdom that they themselves were given or acquired. These parents generally believe that you must use every resource at your disposal to make sure your kids are good, well educated kids for as long as they are kids. Once they are adults, they will be free to do as they like. Commonly, they also believe that what they teach their kids as kids, will allow them to be truly free and independent when they are adults.

But this is not the only way of looking at parenting. There is also the view that all children are born free, competent, moral, and already equipped to gain mastery of all the skills they need to be fulfilled as humans. This kind of parent is more like to see the parent child relationship as a friendship or partnership in which the parent's role to keep the child safe and to facilitate access to the things that naturally interest the child. They may argue that most of the evil we see in people comes as a result of unnatural attempts at molding and manipulating children into useful cogs in society's machine and that, if allowed to develop naturally, they will become all that they can be and then some.

Of course, no one adheres strictly to one group or the other. Everyone uses a bit of both philosophies. But, for the record, I use a lot more of the first philosophy than the second.

The reason I bring this up is that, when we look at a piece of advice such as, "You shouldn't force socialization on your autistic child," or "Your autistic child needs to know exactly what is expected of her in terms of behavior in public," it's useful to know which philosophical camp the person giving that advice is coming from. If they are coming from the second camp, they probably wouldn’t force socialization – or anything else for that matter – on their NT kid either. Likewise, people in the first camp usually think that everyone, NT, ND adult and child, benefits from knowing what is expected of them.

What this means is that approaches to parenting children that are presented as approaches specific to parenting autistic children may depend less on in the child in question than they do on the parent in question. And that is OK. As BeAGoodDad says, "Raise your child like he is your child whether he has a special need or not."

I guess the reason for my talking about this (I'm working it out as I type, as you can probably tell) is that raising an exceptional child makes me second guess myself. It makes me question my policies and my decisions. And when I see other approaches pitched as being best "for autistics," I wonder if I should be doing things differently. But I think I will try to soldier on with the choices that have I made terms of how to parent, without changing my mind every other day, because I'd probably be just as wrong if I had chosen the other way.

That said, having narrowed down the field a little bit, I think there are some special considerations for parents in the first camp raising kids with autism, but I'll have to save that for another post.

Saturday, July 21, 2007

Kristina's Meme

Kristina at AutismVox listed ten ways in which she and her son Charlie are the same and said it would be OK if other people want to be copy cats. I'll bite.

1) Both MK and I think words are important and care about how we choose them.
2) We are both concerned with social justice and public policy. It's one thing that can get us both angry and one topic of conversation which will draw either of us in, no matter how distracted we are by other things.
3) Chocolate!
4) We both have good balance and poor hand eye coordination.
5) Neither of us feel the cold very much, but we do less well in the heat.
6) We cannot find any object that is not actually in our hands and, on occasion, we have both been known to ask after the whereabouts of objects that have actually turned out to have been in our hands.
7) We enjoy learning about and imagining the lives of people who live under different circumstances, such as people from different countries or from the past.
8) We both spend quite a bit of time publishing things online and viewing other people's online publications (for me it's blogs and for MK it's YouTube).
9) We both like to cook.
10) We are both considered odd by the general public.

Tuesday, July 17, 2007

perservating perservating perservating perservating

The other morning, as MK headed out on our bikes I suggested that he adjust his gear.

"But Dad," he shouted, "I want to speak!"

"OK," I said, not mentioning how successful many people are at changing gears and speaking all in the same bicycling trip, "Speak."

"Sponge Bob says 'Uuurgk wauuuuruha neemit whyob fittlemuurk.'"

MK's mind was full to bursting with preservation. That meant that all further conversation (other than politely saying, "Oh, really" when verbalized at) was going to be impossible. Talking to MK when he is on an internal preservation roll is like trying to get the attention of a man who is watching a beautiful girl walk by. It's all "Huh?" and "Uh, huh, what was that?"

This most recent flavor is an outgrowth of his rapidly expanding linguistic capacities. He has found that he can take his favorite scenes from cartoons, use video editing software to play them in reverse, memorize them, and replay them in his own head, with or without audio output, whenever he likes. I am, of course, duly impressed by the uniqueness of this skill, but at the same time, I have mixed feelings about being urgently told "Uuurgk wauuuuruha neemit whyob fittlemuurk."

It's the same way I felt in years past about being told "Joe's Pizza!" or "That's it, I" or "and now for, uh" or words of similar wisdom upwards of a hundred times a day. It's a mixed feeling because, on one hand I can see it is fun – wildly, amazing fun, in fact. It seems to be fun on the same sort of level as drinking a bottle of rum and waterskiing naked. And I'm reluctant to pooh pooh that kind of joy. On the other hand, for me personally, it's very hard to get far in a conversation that starts with uuurgk wauuuuruha neemit whyob fittlemuurk.

The simple solution is to put my own selfish desire for coherent conversation on the back burner. After all, most of the time all I want to do when riding the bikes is make small talk. I'm a big boy. I can live without small talk. But there is another side to MK's audio preservation. When MK gets going like this he resembles a fourteen-year-old kid who has just smoked a large doobie (or so I gather by way of general hearsay). Four or five verbalized uuurgk wauuuuruha neemit whyob fittlemuurks in a row and he cannot steer his bike. He cannot walk straight and, much of the time is prone to the clich├ęd falling down laughing and/or rolling on the floor laughing. Earlier this year we got clinical confirmation of the fact that playing back tapes in his head can lower MK's measured IQ by nearly two standard deviations. And as a single bout of these sort of giggles can go on for the most part of a day, that can cause problems, especially on school days.

I have tried to convince our guy that this sort of auto-entertainment should be under his control, rather than him being under its control. Occasionally, for example, I can convince MK to play some giggly tapes to counter a bout of anxiety or difficulty in dealing with something overwhelmingly sad, like watching one of two teams (it doesn't matter which) loose in a sporting competition. But by and large, and in the manner of many autistic things, not being able to control it is part of the package

This is not one of those posts that ends with, "And then I tried x and the problem was solved." No, I'm afraid I have to go out on a whimper. I'm left wondering whether or not MK should want to do anything about it at all, and if he did, whether there is anything that he could do.

Monday, July 16, 2007

Did it!

One year less about two weeks from moving cities, MK had his first play date in the new city today. He hung out with his friend, with no problems and, at the end of it, accepted an invitation to go to the new Harry Potter tomorrow. That's it, I can die now.

Sunday, July 15, 2007

Another Eight

I got tagged by a blogger I really like, Steve, over at One Dad's Opinion. Thanks Steve. It seems that every single autistic friendly blogger has now been tagged by this meme, but if I find anyone who is still untagged, I will tag them. (If you blog on autism and you are not yet tagged, consider your self, as of this moment, tagged by this post.) It's kind of fun learning so many random things about people who I read all the time.

The rules:
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

1. I'm 44 and I've never lived in one place for more than seven years. I've lived in eight different countries and speak four different languages. Perhaps not surprisingly, I earn my living as a translator.

2. I'm an economic conservative and a social liberal, which seems to annoy both sides. Fortunately, I love a good political argument.

3. I am very fond of both chocolate and downhill skiing. Until I was about 20, I did a lot of cross-country skiing, which my parents (quasi-hippie British science profs) insisted was far superior to downhill. When I finally went downhill skiing, I realized that my parents had been systematically lying to me all through my youth. On the other hand, they were always honest with me about chocolate, teaching me that the very best chocolate was always worth the money.

4. I write fiction, but I don't try to get it published. When I was in NYC, I used to do readings. That was fun.

5. I cannot type unless my feet are up on the desk and the keyboard is in my lap, which means I could probably never work in a real office.

6. I drink about ten cups of strong tea and two cups of coffee a day, but I don't drink anything stronger than that.

7. The only TV I watch is The Daily Show with Jon Stewart, but I watch that every night.

8. I essentially never listen to music. Another way of phrasing that would be to say that I always listen to music. The thing is that, while I do like music, I cannot do anything else but listen while music is playing. I can't read, or work, or even do relatively simple things like washing the dishes. So usually, I just don't turn it on. My wife, on the other hand, is very fond of music and can work with it in the background. In particular, she likes They Might Be Giants, so I know the lyrics to almost all of their songs and, while in New York, I went to just about every show that They Might Be Giants put on, which was a lot.

Thursday, June 28, 2007

Speaking More of Speaking More

Sorry for the wait. I would have come up with this second post sooner, but I trusted Blogger to hold on to my draft version and, of course, Blogger ate it. I hope it was tasty, Blogger! (If you don't know what I am talking about, then you might not have read Part One, where I went over MK's checkered linguistic past.)

The Intervention

So, what is different now? First of all, we got a new Speech and Language Pathologist (SLP). The SLPs that MK has seen over the past five years have generally appeared to be at a loss as to what to do with MK. We sought out the ones who were specialized in communications, and not speech production, and we even worked with one who was the well-published head of a university department, but none of them really seemed to have any more idea of how to help MK than we did. They flipped between play therapy and grammar drills with no noticeable effect. We found them useful as sounding boards for our own specific questions about things like how to respond to echolalia, and as book recommenders, but that was about it.

The new SLP is different. Some of her core training comes from Reuven Feuerstein, who she studied under in Israel. Her day job (MK has been seeing her privately on Sundays) is as an SLP in a school for developmentally disabled kids that is entirely based on the Feuerstein approach. Feuerstein's big idea is Structural Cognitive Modifiability, which basically states that you can not only teach thinking, but you can actually permanently change the way the mind processes information as a result. Another set of techniques she uses come from Naci Bell, who came up with Visualizing Verbalizing. This is a teaching technique aimed at ASD kids, in which they are taught to visualize events as scenes, with an emphasis on gestalt, or seeing the main idea in context. As they get better at visualizing in a coherent way, they are encouraged to draw on their visualization when verbalizing.

(I can't help but notice the similarities between these techniques and what I gather is going on with Brain Engineering, which is what MothersVox from Autism's Edges describes in her post, Trying Something New. Sweet M is likewise showing great progress, which warms the cockles of my stony heart, in part because, ever since I started reading Autism's Edges I've felt there were similarities between Sweet M and MK.)

With the new SLP the sessions are only one hour long, once a week, but she packs a lot in.

First they do Feuerstein "instruments," which are all about manipulating purely visual information. MK has just finished working on an instrument that involved five rows of pictures. Based on the pattern of pictures in each row, you he has to deduce, by inference, which picture from a separate pool of pictures belonged to each row. In addition, at the end, he has to say whether any of pictures in the pool did not, in fact, belong to any of the rows. So this involves holding five inferred answers in memory and comparing them to the pool to make a secondary inference. They do this many times, and go faster and faster each time. They do this for about ten of fifteen minutes.

Then they move to listening to short stories and identifying the main idea. They started off with identifying a main idea that was actually stated in the text, but as soon as MK had mastered the inference instrument described above, she switched him to a different set of stories in which he had to identify a main idea that was not actually included in the story but could be deduced by – you guessed it – inference. This is another ten of fifteen minutes for ten short stories.

Next they've been running though the who, what, when, where, why, how questions, with MK listening to statements and deciding which kind of WH question the statements correspond to. That's short, probably less than five minutes.

Then it's time for Visualizing Verbalizing. MK gets a picture that the SLP can't see. MK then has to describe it to the SLP. In the end, the SLP is going to describe the picture back to MK, and then they will look at it together, so MK understands that he has to make the SLP understand the picture fully. It's interesting to see how MK has progressed with this. For example, at first, when the SLP asked MK to tell her about the colors, he used to say, "I see back and yellow and green and red and brown…" Now, when she asks him that question, he says, "The boy's jacket is brown and his mittens are yellow…" What is even more interesting is the way that, after a couple of months of doing the short stories described above, when MK had gotten really good at naming the main idea, the SLP gave him his Visualizing Verbalizing picture card and said – you guessed it again – tell me the main idea.

I'm sure you are getting tired just reading this, but there is more. Now it's idiom time. They do these in sets of 50, building up 10 at a time, using cards. She starts off by getting him to guess the meaning from three possible choices. Usually that's not hard for MK as two of the choices are always close to the literal meaning, so the third answer is obviously right according to – need I say it – inference. For example, "When you tell someone to get off their high horse you want them to: a) get down from a high place; b) stop acting like a snob; c) put their horse in the stable." If you've got your inference working, you can spot the right answered without even knowing the words "snob" or "stable."

Last they usually play a board game like "Semantically Speaking," in which every turn requires answers about more idioms or homophones.

This all sounds kind of grueling written out like this, by MK loves it. He bounces out of that room just glowing with success. That is probably mostly because the SLP makes sure that the level and speed of advancement is adjusted so that MK gets 80 to 90% right answers. What is more, she responds to his answers in such a way that he perceives himself as getting 90 to 99% right answers.

The Changes

I was just talking to MK's pediatrician (who I must say is a real rock -- he sets up appointments every couple of months, just to talk to me, to listen to what is going on, to encourage me to be a pain in the butt at school and offer to write any letters that might be helpful) and I told him that Sasha was making incredible progress with language recently and also we are really impressed by his SLP, but we can't be sure that the two are connected.

That just the way it is with these things. Someone, and I am pretty sure it was someone on Autism Hub (would it ever be nice if all the archives of all of the blogs on Austim Hub were searchable from some magic Google page) wrote this really good piece on evaluating interventions. They said that everyone -- ND, DT, whatever – develops in fits and starts. There are periods where they rush forward, and periods where they appear to go backwards. This is the way the human organism works. And if you happen to start a new intervention at the same time as your kid is surging forward, the intervention will appear to be working. If you start the same intervention when they are slowing down or "regressing," it may appear to be useless or worse. What is more, we can often have two or three different interventions going on at one time, and some things are going to be more effective in combination. So I would be very reluctant to say MK's new SLP is causing MK's linguistic progress, but if she's not at least contributing, I'd be surprised.

So here's what going on. A couple of months back MK started this massive surge in vocabulary. He just started using new words and expressions in every other sentence. The big change was that he was doing it deliberately and enjoying it. He suddenly found that he could retrieve all these words and choose to use them, on the fly, just for fun. Then, all of a sudden, we got humor. MK used to say silly things for a giggle, but they were generally non-sequiturs. These new jokes made sense, had timing and were actually funny. Just as I was getting used to that, he started in with the puns. That's where we are now. Puns right left and center. A year ago, just hearing puns confused him and, if they were explained to him, they actually made him cry (MK does not like cognitive dissonance). Now he is playing with every word that comes along. The other day we were walking past Home Depot and there were all these bags of potting soil sitting out on the road. "Let's steal some," I joked. "No," shot back MK, "they're dirt cheap anyway." – Pun and idiom in one fell swoop!

Where we live, there is a mountain with lights on it that look like a letter M. I joke that it stands for my first name. MK says, "Yeah, it's your signal because you're Superman. No, you should be Super-Mar," those being the first three letters of my name. Then he goes on, "But it would be more fun if you were Super-Mars!" – a slight pause – "You know Mars has another meaning? That's the name of a month in French. It means March." You can just hear the neurons crackling!

And that is not all. MK has never been able to narrate an event that happened in real life. For some reason, he can recount entire novels, giving the chapter numbers as he goes along and reproducing the dialog, but the question, "What did you do in school today?" has always been answered by "I don't know." Now, all of a sudden, it's, "Two periods of Language Arts, one period of math, PE and an assembly. We were doing parameters and areas in math. In Language Arts I had to compare Iceland and Greenland (with prompting, details of the comparison emerge). The assembly was boring because they were playing loud music and I didn't like it." This is completely uncharted territory for us. In fact, I just got through demanding a home-school communication book at MK IEP meeting, because there was no other way for us to know what happens at school. Things have changed.

And then there is sudden capacity to understand and talk about systems in the real world. About a year ago, we saw a bunch of log rafts on the river, and I asked MK where he thought they were going. "I don't know," he answered, "to a factory." Wow! I was impressed. MK didn't usually show that kind of insight. "And what do you think they are going to make the logs into, at the factory?" I asked. "I don't know," MK replied. "Trees?"

It's harder to give short examples of general comprehension, but compare that to the conversation we had recently when I mentioned that it was possible for babies to be born at home. "So what happens," he asked, "Does the doctor come to the house?" And when I told him about midwives, he wanted to know, "What about the machines? Does the midwife bring the machines from the hospital?" There is a whole lot of inferring going on!