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.

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?
No.
Then it is not showing. Look at you neck. Do you see anything odd.
No.
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.

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.

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.

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.

Curebies

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.

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.

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.

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.

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.