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.

Video I Hadn't Seen Before

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 clichéd 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.

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.

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.