Introducing The Enigma

Although I haven't blogged about her explicitly, The Boy, The Flower and The Barbarienne have an older sister, who for blogging purposes, I'll refer to as "The Enigma". The Enigma is the oldest, and as all first children, she was life-changing.

The Enigma was especially life-changing, as she is severely brain-injured.

A botched surgery at four days left her with a host of developmental problems. A lot of the references I make to things like the ketogenic diet, the IAHP, or "snake oil" in general come from the experiences I've had trying to help her. ("Standard" treatment for brain-injured kids these days is to load 'em up with drugs for depression and hyperactivity, give them a lot of useless therapy, warehouse them in special—er, wait, now we pack 'em in with the rest of the kids, no matter how inappropriate—and load up the parents with antidepressants, while we're at it.)

One thing parents of brain-injured children tend to do is to look at other brain-injured children and thing "If only...". It can be hard to comprehend for someone with "normal" children, but I can look at Down's Syndrome kids and think, "They've got it easy."

I'm not going to be coy: I'm blogging now because of Simon's tweets about his son, who reminds me strongly of some of the kids the IAHP has treated over the years.

One of the eye-opening things they do at the IAHP is that they point out that kids like The Enigma, because they're obviously brain-injured, are given certain leeway. Society dismisses them, sure, but because of that, when they do something socially incorrect, the thought process is "Well, they're retarded." Or whatever the word du jour is.

But massive numbers of children are brain-injured in ways that have no visible trace. The various syndromes referred to as ADHD or dyslexia or things that don't even have names yet leave a child who looks perfectly normal, yet who is unable to function in some critical way.

These kids are "stupid", "lazy" or just plain "bad". I was in a room full of parents of severely brain-injured kids, and not one of us didn't tear up hearing about kids who were so high functioning, that they were actually treated worse than our own kids.

When I hear about Simon's kid, I think of a story they told at the Institutes of a teen who had been brought in because he always made the wrong choice. Well, that's weird, isn't it? It doesn't sound like a brain problem.

Now, anyone who reads this blog knows I'm big on looking at spiritual causes, responsibility, discipline. But, to draw an analogy, if the body is a computer and the brain is the CPU, then if the CPU is screwed up, it doesn't really matter what the computer user's intentions are. The results will be screwed up.

This kid who always made the wrong choice was brought in for an interview. And after exchanging some light interview questions, the interviewer adjourned with the kid to show him around the campus.

On the way out, he asked him to turn off the light—a little desk lamp.

And the kid reached for it with one hand. Then he stopped. Then he reached for it with the other hand. Then there was this little struggle. This kid couldn't turn off a light! Instead, after agonizing for several seconds, he grabbed it and tried to smash it on the floor. (I don't recall if he succeeded.)

It's sort of astounding. I might even be disinclined to believe it, but I see similar behaviors from The Enigma on a daily basis. I see "normal" kids all the time and can spot the brain injuries that will go unnoticed for all their lives. You can imagine the reaction of a parent to the notion that their beautiful, perfect child is "brain-injured". It's better, in most cases, not to bring it up.

(This, in my opinion, is due to the complete failure of "standard" treatments to do anything at all about brain injuries, so a brain injury is considered a sort of life sentence.)

An average kid who functions normally in most instances is almost never going to be correctly identified as far as brain injuries go. In most cases, that just means they'll go through life thinking they're clumsy, or unable to do certain things. In other cases, the results are more dire.

Now, where I get jealous of kids like this is that the fix is ridiculously easy, at least compared to the more severe injuries, many of which are not totally fixable (at least not by the IAHP's methods).

Anyway, my heart goes out to Simon and his family. I hope they find an answer.

Better Off Dead

Freeman Hunt linked to this Daily Mail article about the horrors of having an autistic child.

Huh.

It's a fairly offensive article. Not because it doesn't accurately describe the potential difficulties of having a brain-injured child. I think people who only know about it through TV shows and movies should be aware that it's a grind. And the rewards, such as they are, don't fit neatly into a narrative, a la Rain Man.

The author's conclusion is that the child she's describing and everyone whose life he's touched would be better had he never been born. And, oh, we should have tests to find out who the autistic kids are going to be so they can be aborted.

You know, it's not so much the "wishing for technology" that's lame. It's that the wishes themselves are lame. I mean if you're going to wish for something, why wish for a test that allows you to preemptively kill problem children? (We won't get into the question of how the test determines the severity of the autism, even presuming that autism vs. an inclination toward autism could be distinguished, and that the genetic propensity to autism--if it even exists--doesn't also include a genetic propensity for something that's got a survival advantage, etc. etc. etc.)

I mean, if you're gonna wish, why not wish for a cure? And not just for autism, but for all brain injuries. Now that is something to wish for! My friends at the IAHP have a success rate of only about 17% (IIRC)--not that they don't keep trying.

But it doesn't strike me as impossible, and while it wouldn't give one the grim satisfaction of "being honest" about difficult situations, it would have the bonus of being helpful to stroke victims, dementia patients, and all those other people that seem to float to the top of the euthanasia list.

Wishes aside, the article laments all the things in life the author feels the couple is being denied by their child, and proclaims that three generations' lives are completely ruined now. There's an almost impressive lack of empathy for the child.

Rather than pick through the various appalling items enumerated, I'll just mention a point of interest: Back in the old days, a person would have aunts and uncles, nieces and nephews, and cousins of all stripes to help with family issues. Now that extended family is gone and the issue is largely relegated to the state, the state doesn't seem to be able to step up.

Something to think about if you're the Lone Wolf type.