Sunday, April 12, 2009

That's all folks.

I've been using this blog to narrate my own experiences as a parent of a child on the autism spectrum. That has included my own thoughts about how society thinks about autism as well as a lot of discussion of my son's achievements and challenges. Now that MK is older, his story is less and less mine to tell. The other day he headed off to the movies with a friend from school -- just the two of them. Today, he shaved for the first time. MK is doing great. He has a shining future ahead of him. His story is his own to create and to narrate.

I will continue to read the blogs I have been reading and, if I get a real hankering to talk about my own story, I will start a new blog.

In the meantime, I will leave you with one of my favorite songs from my favorite autistic musician.

Wednesday, March 18, 2009

Different Ways of Seeing Things

I bookmarked this article some time ago, meaning to blog about it when I had the chance. The reason I wanted to respond is that it brings up a way of looking at autism that is different from my own, and which I have difficulty getting my head around, but which I think is very common.

In the article, the author asks whether or not her son has recovered from having autism. It strikes me as an odd question, similar to asking whether a person has recovered from being gay or being white.

Part of it is attributable to the author being misinformed. For example, she says:

Seven years after the initial diagnosis, Leo has achieved significant gains in areas thought to be unattainable by even high-functioning children with autism spectrum disorders.

He attends a regular school and is socially engaged, articulate, creative and performing at grade level with a tutor for reading and handwriting. He understands and can express complex and abstract thoughts. He can empathize. And he has friends he cares about and who care about him.

What she describes is, in fact, bog standard for kids identified as having high-functioning autism and the last three sentences are true of kids all over the spectrum, though the modality in which those things are expressed may make them invisible for some observers.

In the attempt to differentiate autistic from non-autistic, they focus a great deal of attention on friendship:
I answered hours of questions focused on Leo's ability to make and keep friends. I said Leo had friends, even a best friend, and asked for play dates without prodding from me. That's key: While many children with autism spectrum disorders have friends, according to Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, they don't seek out peer relationships. "Having an aunt or a music teacher as a friend doesn't count," she said.
This such an odd thing for a modern professional to say. My son has had many friends, some of them autistic and some not. Of course he has asked to play with these kids and I know that his autistic friends have asked to play with him. It is true that the asking part has not always been entirely smooth. For example, a phone call in which two young autistic kids, both with language issues, arrange to meet is a more difficult thing than it might be for two typically developing kids. But to confuse this disability with lack of interest makes no more sense than assuming that people with spinal injuries do not want to move around.

Of course, from my point of view, I would not consider a person who was a loner and felt more comfortable with their aunt or their music teacher as someone in need of any particular recovery, so the whole discussion is somewhat lost on me.

Our guy has grown up very nicely so far. He has had some very real challenges, which have been best met by some kinds of teaching that were developed for autistic people. I'm glad that he having an easier time with language (in fact, he's having a lot of fun with language these days, in a way that many typically developing kids do not) and that it is easier for him to deal with sensory input and challenging social situations. But I don't ask myself if he has recovered. When I see him with a newspaper, or plowing though his math homework with gusto, or spending countless hours in deep concentration on his art, or monitoring the weather in 30 different cities, or keeping up with his ever widening gang of online friends, I see an autistic kid and I am proud.

I don't know whether autism is going to be a conscious part of MK's identity as he finishes growing up and makes his own way in the world. Life is long and people and fashions both change. He may or may not find that word a useful way to describe himself. If he does, I really hope (in fact, I insist) that it will be a source of pride. That will be easier if people stop asking whether happy, well adjusted autistic people have recovered and simply accept them as happy, well adjusted autistic people.

Monday, February 23, 2009

This fun video doesn't need much explanatory comment from me.

Sunday, February 8, 2009

Adapted Instruction

I am happy to announce that I went up for another ski lesson yesterday with adaptation to suit my needs and it went much better. First, I made it a private lesson so that I could get what I needed. Second, I dealt with the language thing in advance by requesting a native speaker of English. Next I told the teacher what troubles I could have in terms of learning new things for my body. I also told her what my strengths were in terms of learning.

We ended up working with just three exercises for the whole two-hour lesson, all of which were aimed at one single teaching point. There were lots of explanations as to why we were doing what we were doing, just as I had requested.

At the end of two hours my control had improved so much I felt like I was using some new kind of equipment. I'm going to go again next week with the same instructor.

I'm glad that being MK's father has given me some practice in insisting on, and arranging for, suitable and effective education.

Saturday, January 31, 2009

Ski Dunce

I'm sorry, this is another skiing post.

Apart from skiing with MK, I've been doing a lot of solo skiing. I guess you would say that I've turned into a a bit of a junkie. I'm 46 which is late to be learning and, as I see it, I only have a few years to really master this sport if I want to ski at a fairly high level through my fifties. Basically, I have to do most of my falling now, before the age at which it starts to cause injuries. So I have been going up the hill a few times a week and working hard on my technique. Nonetheless, I've been stuck. There are things I can't get beyond.

So I took a lesson. It was a group lesson, for advanced skiers. I've taken the very same lesson before, as well as some intermediate lessons on the same mountain. I knew, or thought I knew what to expect.

I should make it clear that, while I have good balance, do a lot of sport and I'm quite fit, I am not athletically inclined. I'm awful with aall ball sports, for example. My coordination is poor and have a lot of difficultly positioning my body in space. I university, for example, I had to drop out of my tap dancing course (I was a theater major) because I could not keep up even with the basic introductory drills. Still, when I put my mind to it, I can learn.

But not today. There were three of us in the group and we had two instructors. From the first exercise, I had trouble getting it. you had to two tow different things with your two different hands (things that one never does with one's hands when skiing) and a third thing with the legs. If I would have repeated it two or three times, I probably would have been OK, but we moved on right away. Next, they had us lay in the snow with our feet in the are and turn them. I didn't turn mine right. I'm still not sure what right would have been. Fresh on that failure to grasp the theory, we went on to apply it in practice. I didn't do very well at that either. I was still trying to apply the first exercise, which was about edging, and in this one we were not supposed to use our edges. Having failed to do things properly with or without edges, the second instructor, taking pity on me, started correcting my posture. With my new posture on my mind, my top/bottom separation (your shoulders are not supposed to move when your legs move) was lost. This was noted and offered as an explanation for my general uselessness. By this point, we were certainly in need of an explanation, as I had gone, in the space of an hour, from a confident skier, zooming down the black slopes with gusto, to a stiff, awkward novice who might have appeared, to an outside observer, to be trying out skis for the first time. At one point, I skied into a fence at about three miles per hour. Both instructors felt for me. They said they could see that I was afraid (I probably looked that way) and apologized for the steepness of terrain that was tediously flat. Over the next hour, they all but ignored the other two students and tried countless additional explanations and approaches and exercises meant to help me get it, but I got worse not better.

At the end, I thanked them for their patience, but I should have also thanked them for the opportunity to experience what MK so often has to live through. This was input overload, which had a cascading effect of shutting down my existent skills, requiring more and more mental effort just to stay functional. There was even a language component. The instructors were Russian and, as the lesson progressed, I stopped being able to understand their English. Classically, they were well intentioned, and as an expression of that, they placed more and more demands on my overloaded systems. They developed theories to account for what they saw and added to the complexity of the situation. All of this in front of my fellow students, giving a nice social edge to it.

I'm pleased to say that I did not ski off in the middle of the lesson (it was touch and go, but I really did want to learn). Once it was over, I went and got a coffee and made a list of the eleven things that they were asking me to do simultaneously. Then I went off and practiced two of them for the rest of the day (mixed in with a bit of regular skiing). I can report that I did in fact get some millage out of the two things I was working on. Nonetheless, it was a demoralizing experience. And I'm a grown man with all sorts of psychological supports and techniques at my disposal to help me shrug it off. I can only imagine how it must feel to someone younger and less able to see the experience from a distanced perspective.

I'm wondering if I should just go ahead and rename this blog: What Skiing Teaches me about Autism.

Saturday, January 24, 2009

Following through through following

The other day MK and I went skiing. If you've read this blog before, you'll know that skiing has been a real boon for MK and that, though it was a challenge for him to learn how two years ago, once he got it, he really got it.

Nonetheless, by the end of last year we hit a plateau that MK was unwilling to go beyond. He had learned good parallel skiing style, including hockey-stops and all the rest, and he was comfortable with all those moves on the bunny slope or relatively flat parts of the green runs. But as soon as the pitch of the terrain steepened, MK would revert to the snowplow (a technique in which you point the tips of you skis together, making a triangle shape, which lets you move very slowly). That's a sensible thing to do when you fear you might loose control, but to be safe and have fun on steeper terrain, you really have to use parallel techniques. MK and I had quite a few talks about this, and I did a lot of coaching, and while he was willing to do a few parallel turns on the steeper stuff under duress, it seemed we had come to an impasse.

Since I am writing this post, you have probably guessed that something worked, and that we hit on a way of following through. If you paid attention to the title, you will also know that this was done through following.

What happened was simple. We were going done a really flat part of a green run and I was complimenting MK on his nice parallel turns. Then I said that I liked them enough that I was going to try to copy them. So I got behind him and skied exactly in his tracks, going where he went and turning where he turned. Amazingly, MK started making parallel turns all the way down, including the steeper parts, where he had always switched back to the snowplow before. When we got to the bottom, he told me he felt better about his skiing with me behind him. So we did it again, this time he decided to make it tough for me. He started skiing faster and speeding up the turns to try and throw me. On the third run he was actually carving (short fluid turns) and in a couple of places he did, indeed, make it impossible for me to stay in his tracks.

So there it is. He learned something and I learned something.

Tuesday, December 23, 2008

Let's Get Physical

This seems to be next on the list. Language and logical thinking are more or less taking care of themselves. (With the weekly language therapy and continuous attempts by this less-than-skilled father to use the mediated learning approach to problem solving.) For example, our current bedtime story is 'Call of the Wild', which is filled with language that I find challenging but which MK loves. We are also back to getting As and Bs on the report card, without modification of the curriculum.

But physical things are still hard. Shoelaces are there, but are still a challenge and often require multiple re-dos. Handwriting and basic drawing are OK (at long last) but putting sheets into binders is more difficult. The other day walked MK through replacing the light bulb in his room. That was hard. It would be relatively tricky for any 13 year old, but it was very hard for us. Unfolding the ladder, getting fingers onto those tiny retaining screws, handling the light bulb without breaking it, fear of electrocution, boy-oh-boy. Coaching and explaining through every millimeter, I felt like a puppeteer with his strings crossed. But we did it in the end and MK felt justifiably proud. This evening he applied all that we had learned about screws to assembling the Christmas tree stand, and he felt even prouder of that.

It seems to me that this is a window. We are on the cusp of competence and what I want to find is some way to help MK across to the other side. He doesn't have to get signed by the Knicks, but I do want him to be confident about where his body is in space and to know how to use it for ordinary day-to-day stuff. So I am going to start looking for a new hired gun.

Wish us luck.

Friday, November 14, 2008

No 'cures' here

Recently, I've been posting about how great we are doing, and we are doing great. But I thought I might mention that, great as we are doing MK has not morphed into some boring neurotypical kid.

He is still exceptional in his interests and his skills. For example, earlier this year, after really struggling with basic geography (what is the difference between a city and a country) he learned basically all the countries in the word, what languages they speak there, what their populations are and many of the capital cities. Recently, he has included real-time weather to his stack of knowledge. So, in the middle of a conversation about any other unrelated topic, we are likely to hear, "By the way, it's getting cold in Copenhagen. Close to zero. It might snow soon." or "It mostly cloudy in Halifax today."

And there are still some unexpected things that are tricky. We read together for about 45 minutes every night. The first 20 minutes are spent on science type stuff. The other night I found out that our guy didn't understand the difference between a river, a lake and an ocean. For a geography buff, that's unusual. He'll probably soon be regaling us with tales of how many liters per hour various rivers around the globe flow at.

This post doesn't really have a point, other than to mention that one can be doing well and still have a unique take on life and still need help with some things that other people might find easier. It's all good.

Thursday, November 13, 2008

Giving Props

We had our IEP today and spent most of our time taking things from last year off. His teacher said that she had a hard time believing that all of the challenges and supports listed on last year's IEP were real. Just goes to show you something or another.

One thing in particular stuck me when we were talking about how much our guy enjoys gym (two years ago he hated it above all things). What stuck me was how his teacher described the great support MK got from his classmates in gym class. T0 be frank, MK is not good at ball sports. He is probably almost as bad at it as his father. But he gets nothing but encouragement from the kids in his class. It is, apparently, the same in other class activities, and that, I am sure makes a world of difference. It's quite remarkable from kids who are 12 and 13 years old.

I commented on this to the special ed coordinator. She, of course, pointed out that the attitude of a class is very much determined by the teacher. But she also gave some of the credit to a program that they have been running in our school called The Roots of Empathy. They start the program in kindergarten. The other thing that contributes is the school Social Responsibility goal. They talk about sharing and helping and contributing to community and environment at every assembly. The halls are full of social responsibility posters made by the kids, showing things like friendship and inclusiveness and caring and so on. And I think it makes a difference. It seems that when you set out with the deliberate goal of teaching kids to be nice, it works. And and that, in turn, has other payoffs, like allowing very nervous autistic kids to feel relaxed enough to engage in academics and even things like gym.

That's not to say that these programs are a panacea for all things. In the same school, two grades ago, there were teachers who encouraged and rewarded competition above all things and who felt that students who learned differently could not learn together. As our school system gives principals an exceptionally weak role, with almost no input into specific classroom instruction (because the teachers and the principals belong to different unions) we have to count on luck to deliver us good teachers.

That said, the past year and a half have been very good for us, and they have been good because of wonderful teachers. So, though I can't name them by name, and they don't read (or even know about) this blog, let me give props where props are due. Thank you good teachers. Thank you good programs. Thank you good principals.

Sunday, November 9, 2008

Salad Fork Days

My parents were both British. What is more, they were both university profs. What is more, they were both brought up in working class British homes that lived in horror of being confused with the undeserving poor. So for my parent's children, table manners were not optional. "If you want to learn how to eat like a lorry driver," they would say, when a knife was raised too high or a fork turned the wrong way, "you are welcome to study it after you have mastered conventional manners."

While I don't fully share their enthusiasm, it is true that life is easier when you know how these things are done.

But with MK, the straight forward approach taken by my parents didn't work that well. First of all we had years and years of that sort of advanced picky eating known to all those with kids on the spectrum (foods must be white or golden brown, no two foods must touch each other, no one food may contain two textures, etc.) . That meant that our definition of a successful mealtime was one at which MK ate. If we were succeeding in getting food into him, we were not going to snatch defeat from the jaws of victory by bringing up the question of how the food got into his mouth. Then there was the question of extreme sensitivity to being corrected (we are talking deep sadness and tears in response to something like, "It's best not to put your elbows on the table, Buddy."). Then there was the whole mechanics of manipulating anything held in the hand, which applied not only to knives and forks, but also pencils and scissors and glue sticks (but not, of course, to game controllers). And last, but not least, there was the whole communication thing. At the age at which most kids are getting the fundamentals of table manners, we were still doing the you/me confusion thing. If you've never done it, you cannot imagine the hours of entertainment that come with a phrase like, "Pick up your knife," when your interlocutor has "your" and "my" reversed. (By the way, it is impossible to explain you way out of this reversal. If you attempt to do so, you will find yourself in an ad lib recreation of "Who's on First." )

And so it is with great pleasure that I announce my latest finding in the science of child rearing: these things can be learned even at the ripe old age of thirteen. We now have our ducks in a row. MK's favorite foods now include escargots and mussels. The sensitivity is at a level where composure can be regained in a matter of seconds after a helpful suggestion. MK can tie his shoes and color within the lines. And, so long as I am willing to substitute "truck" for "lorry," he has no trouble understanding standard instructions regarding table manners.

Just today he managed to eat his whole meal with his fork in the proper, inconvenient, downwards orientation.

Good things come to those who wait.