Life Is, Indeed, Strange

When I started this blog, it was purportedly to be about a variety of subjects:  big ones like art, science, nature, and music, as well as issues closer to my heart like photography, New Orleans, Hurricane Katrina, autism, and local music in particular.  Over the years, it’s turned into primarily that last one because… well, because that’s what I’ve always written about.  But as Jeff Magnum sang, it IS strange to be anything at all.  It is a wonderful fluke that we small beings, warts and all, have become one of the most amazing parts of a universe that is full or amazing and wonderful things.

Recent life events have made my visits to clubs to catch the rock (or the roll, or whatever) more infrequent… I really regret having to miss this week’s WKNC Local Beer Local Band show at Tir Na Nog (See Gulls, DaddyIssues, and Midnight Plus One!).  I seldom feel more alive than when I’m standing in front of a stage absorbing every decibel of a great, original local band… though my battered cochleae might disagree.  But in a not-quite-so-pleasant (though every bit as real) way, I also seldom feel more alive than when I’m waiting for days in the psychiatric ER for my son to get admitted to a hospital for treatment.

   

So I’m gonna try to write more about feeling alive.

If you were to follow my personal facebook page, you might notice that I occasionally post about my wonderful son Colin’s travails with autism.  They have, of late, become more challenging.  I don’t do this for personal attention, or to fish for the inevitable “you’re such a great father” compliments.  Although I appreciate the sentiments, and especially the support proffered, I post such things as my way of educating and informing people about autism and mental health issues.  I want people to fully understand that autism, bipolar, schizophrenia, depression, and any other condition that affects the brain and behavior is every bit as much a medical issue as diabetes, influenza, cancer, or a broken bone.  But while stigma and preconceptions do not get in the way of mending a shattered femur, they can be as dangerous to a patient as not treating terminal cancer.

I have always told my son that he simply has a medical condition requiring treatment, just like anyone with any health issue.  Nevertheless, this stigma has already settled into his young mind.  Case in point, he was taken by me to the hospital two days ago.  There had been one too many physical attacks resulting from meltdowns that he has been unable to prevent -- as much as he would like to, and as bad as he feels about them afterwards.  While sitting in the ER waiting to be seen, he noticed the EKG setup, the blood pressure machine, and various other pieces of general medical equipment.  He asked me “Why are these things here?  This looks more like a ‘physical hospital’.”  I knew what he meant.  I explained to him that he has a health issue just like that guy in the next cubicle that has chest pains, or the kid with the broken bone across the way, etc.  It’s all the same.  We need to check how he’s doing from top to bottom, inside and out.

Now, he’s staying in the Behavior Health Emergency Department awaiting placement.  We are surrounded by constant, somewhat scary reminders of the situation:  buzzing in and out, curved/soft surfaces everywhere, no forks or knives, camera surveillance, etc.  But those metal-reinforced, mag-locked doors are every bit as much a medical device as an insulin pump is for a diabetic.  If their blood sugar gets out of whack, they can slip into a coma.  His brain chemistry goes haywire, he can hurt someone (or himself). 

Yesterday, I was trying to explain to him that we were leaning towards inpatient treatment at a psychiatric hospital.  He was nervous and a little choked up.  But he was also very coherent and approached the situation with incredible intelligence.  He laid out a stunningly eloquent argument -- right out of a legal drama -- in an attempt to convince me he could safely go home.  His “defense” was two-pronged:  1) Between him now seeing the extent of the possible consequences, combined with intensive in-home therapy (which we have been trying to arrange), he was confident that he would be able to control his meltdowns and prevent them from escalating, and 2) In the 18th century, we used to lock up "crazy" people in asylums and throw away the key, which we now rightly consider barbaric.  He argued that, in the future, we will consider what he is going through to be barbaric as well.  As medical science improves and we get a better handle on how to treat behavioral & mental issues, he may very well be right.  

But I firmly believe, and explained to him, that we can only go with what the best science has to offer today.  Science, modern medicine included, isn’t perfect (particularly when it comes to behavioral issues).  But the scientific method allows it to adapt to new information, change, and self-correct.  We have evolved a long way from the days of the horrific asylums of a century or even fifty years ago.  Of course, Colin countered that “the evolution isn’t complete”.  No, it isn’t.  But we’re doing our best.   

I have seldom been as proud of my son or impressed by his formidable intellect. 

Different brains work differently.  Neurodiversity should be embraced.  While the neurologically atypical brain may present its owner with many challenges not experienced by the neurotypical, it may also present us all with wonders and solutions which we could never imagine.  We only need to work to help those possessing such brains, and to keep a diligent watch so that we don’t miss what surprises they have to offer.  

Constructive Destruction

The video speaks for itself, but I believe this kind of cathartic, retro-artistic expression does wonders for the autistic mind.  Thank you, Artspace, for providing this wonderful opportunity!

Tourette's (Parents) Uncovered?

So I watched the Discovery Health show, Tourette's Uncovered, the other day. As the parent of a child with Asperger's Syndrome, Tourette's Syndrome, and ADHD, I have to say, it really steams me sometimes at the pain and suffering some parents will put their children through in the desperate search for a "cure".

These parents were having their child undergo Deep Brain Stimulation (DBS), a surgery in which a "pacemaker" of sorts is implanted in the brain, in an effort to control his admittedly severe Tourette's. Although it has shown benefits for other conditions (Wikipedia: Deep Brain Stimulation), DBS is unproven (and unapproved by the FDA) for Tourette's. It was costing this family upwards of a quarter of a million dollars. The main drawback of the kid's Tourrette's? He was teased in school a lot. This kid, near as I could tell, only had Tourrette's, and seemed well-adjusted, and not developmentally disabled or disabled in any other way. Yet he will now have a brain implant in which the risks are significant and their are no proven benefits for his condition.

My son has Tourette's, too, although that is minor compared to his social deficits via Asperger's. He can't make friends in the way we normally think of people doing so. He is an intellectual genius for his age (10), but socially behaves more like half his age. He literally cannot stand or sit still. He needs a one-on-one assistant with him all day at school. He is prone to fits of rage that he cannot even remember, nor recognize as they escalate.

And he tics. A lot. Sometimes he gulps or grunts. Sometimes he blinks. Sometimes it's almost non-stop, all day. Sometimes he'll go days without doing it. Lately, he's been doing the Pee-Wee Herman "Tequila" dance... you know, hands touching in front, then in back, then in front (he's never seen the movie). I suspected it was a tic, but didn't call attention to it until I asked him today what he was doing. He said "I think I remember doing it but I don't know why. Probably just a tic."

Now, am I going to put my perfectly fine... and perfect for who he is... boy through the torture of brain surgery, AND run the family broke, to fix something he hardly notices? And even if he did, and even if everyone else did, and teased the hell out of him, it would at worst be a life lesson that can make him stronger if we teach him and approach it with care as parents.

I am always amazed and upset at parents who put their kids through a myriad of unproven procedures, diets, and treatments in the name of "curing" their autism, Tourette's, or whatever. My son has issues, yes, but I don't know if I'd ever want to change a thing about him. I certainly don't want to "cure" him. He doesn't need it. He just needs understanding and a little help. As we always tell him, there are good things about your autism and bad. He has fits of rage, is awkward and socially inept, but is also a genius with a near photographic memory and a mind that astounds us constantly (even before he taught us how to count to infinty, when he was about 5).

I wouldn't change him for the world, and I certainly wouldn't put him through risky, unproven brain surgery to do so.