Dis/comfort

For reasons I cannot easily explain, I have long enjoyed reading the Miss Manners column. While I do not remember her explanations of how to eat, say, snails, one of Miss Manners's responses has stuck in my mind for a number of years.

In this letter, the writer asks Miss Manners how she can convince her sister-in-law, who lost one of her legs, to stop wearing shorts and bathing suits to family barbecues and pool parties. The writer complains that her sister-in-law's stump makes other family members uncomfortable, but the sister-in-law refuses to cover up. In response, Miss Manners suggests that the letter-writer might try looking her sister-in-law in the eye when speaking to her, instead of focusing on her missing leg.

Recently, I find myself thinking about this letter a lot. My son's tics have been severe for several months. We have explained his tics and Tourette's to other people (adults and children) at art class and at tae kwon do. The reaction has been overwhelmingly supportive and positive, even though my son's major tics are painful and sometimes alarming to behold. Some children help O when he has a major tic, other children continue with their work, unaffected. Nobody is complaining about O's tics or shunning him because of the strange things his body insists on doing.

Adults sometimes have a different response than children do, though. Before we explained what was happening, some adults laughed at O's tics. Others are visibly disturbed by them -- whether this is due to concern or personal discomfort is anyone's guess. Some people, including people who have not met O, people who merely hear that he has Tourette's, seem to feel that O should not cause other people discomfort by mingling with them while he is ticcing. If O is not able to control his tics, they say, he should not come to a particular event or participate in some activity, because it is important that everyone who is at said event or activity feels "comfortable."

What does this mean? What is "comfortable," and how is it being measured? What about the comfort of the person who is being excluded because of something he cannot control? In my opinion -- not that anyone asked -- "we want everyone to feel comfortable" is a fuzzy, ill-defined, arbitrary, difficult-to-enforce notion. It is the lamest of lame excuses, and it sounds a lot like "this scares me, and I am going to use my own fear and ignorance as an excuse." To those people, I would say, quit focusing on my child's tics, and learn to look him in the eye.

Two years and out?

A story in today's Washington Post questions the long-term benefits of ADHD drugs and asks if researchers downplayed the medications' side-effects and the absence of long-term benefits from their use. Noteworthy: the medications' tendency to stunt growth, and the apparent loss of any benefit from these medications after 24 months.

Medical board reaches decision on accused pediatrician

Dr. Melvin Levine, pediatrician and author of A Mind at a Time, has agreed to never again practice medicine following a series of complaints and accusations that he molested patients. He will be allowed to continue to write and lecture.

It's a really big hill, revisited

A while back -- two years ago, now that I think about it, I wrote a post called "It's a Really Big Hill." I was thinking about how people do not grasp what Origami is all about until they have had a one-on-one interaction with him. Here is an excerpt from what I wrote:

In general, it does not take anyone very long to notice that O is "different," but very few people are able to grasp that we are dealing with another degree of "different."

When I tell people that we bought a house with a huge sledding hill in the back yard, they will nod and say something like "Oh, yes, our kids like to sled in the back yard, too." "No, really," I will respond, "You can ski down this thing, it is huge." "Oh yes, we know what you mean," they say. Then they come to our house. "Whoa! That hill is huge!! I had no idea you meant it was that big! How on earth do you mow it?" Seeing is believing, I suppose.

In the same way, we talk to people who will say, "Oh, yes, O seems smart, but don't they have programs for that in school? How far ahead could he be?" Well. There is no good way to quantify Origami's needs without coming across as a jackass, so in general we do not even try. The short answer, though, is: pretty darn far ahead. The longer answer might be more along the lines of, "Well, why don't you come on over and try to mow our back yard?"

I found myself thinking about this again recently, as I did sprints up the hill as part of my speedwork. I guess that oxygen deprivation shook something loose in my brain.

My son's tics have worsened dramatically in the last several months; this is to be expected at his age, but expecting the tics to get worse has not made them easier to handle. No parent wants to see his or her child in pain; it should be obvious to any observer that my son's tics cause him a great deal of pain.

I have written about how severe Origami's tics are. I have talked to friends and relatives about how severe Origami's tics are. Everyone has been wonderfully sympathetic and supportive. But I really do not think anyone understood just what I meant by "severe" until I shared video of O's tics. The extreme always makes an impression -- or is that, seeing is believing?

Let me put it this way: When Origami saw what his major tics look like, he was upset. He deals with the pain and the anxiety all the time, but he had no idea what the rest of the world sees when he tics.

I am not going to share video of Origami's tics on a public blog. Instead, I will share a photo of O enjoying the first snow of the season in our back yard. It's a really big hill, trust me -- or see for yourself.

Is Provigil addictive?

A new paper in JAMA discusses the potential for abuse of modafinil (Provigil).

"What's a smart guy like me doing in a bar like this?"

An article I stumbled across on Yahoo proves to be less asinine than I feared. In brief: an author/"expert" apparently declared that the higher one's IQ is, the more difficult it is to date. The author of the piece I linked to above politely calls bullshit on this theory.

That's about it, really; this is not an article of substance. The topic could spark quite a debate, though. I am sure that I know people who would side with the author/expert/hypnotherapist, and I am equally sure that I know people who would claim there is no correlation between dating failure and IQ. I personally think it might be a matter of social skills or "emotional intelligence" more than IQ score.

Deep Brain Stimulation to treat OCD?

Medtronic's Reclaim receives FDA approval for use in treatment of OCD where drugs and therapy do not work. Deep Brain Stimulation has been used in the past to treat movement disorders, but this is the first time it has been approved for treatment of a psychiatric disorder.

Missouri legislature considers mandatory insurance coverage for autism

http://news.yahoo.com/s/ap/20090305/ap_on_re_us/autism_coverage

I am having a difficult time understanding how someone could be opposed to this.

apologies

My apologies to those of you who pop in here, looking for new posts. As winter drags on, so do I. I will try to post new and exciting tidbits soon....