Two parents, one autistic toddler, one on the way, half a clue, and just enough light to see by

The Croup has landed on the Flashlight house. Man I was starting to feel bored, lazy, and complacent so it’s a good thing this happened! Feel the sarcasm oozing from every pore!

And even better is that there really isn’t a dang thing you can do about croup except maybe crank up some humidifiers. And at this point if it could possibly work, we’re all about it. We obviously need a bigger humidifier for the downstairs so he can be more comfortable during the day. So we may be off to Bed, Bath, and Boogaloo tomorrow with our fistful of 20% off coupons to buy more. Given all the coupons they send us, we should get a humidifier for 246% off.

What was amusing is that in the midst of all this misery, J-Man actually had a really good speech day. In the doctor’s office, we sang the ABC song, and he did a great job getting most of the letters out pretty clearly, even while talking through a snotty nose.

In more talking news, I’m still diggin’ that he calls me Daddy consistently now. It never gets old after over three years without the ‘d’ sound in the house. He says it in a few ways with “dah-dee” or “duh-dee” being the most common, and with the last “dee” becoming “die” on occasion. Sometimes it comes out “dah-zee”, I think because the ’s’ and ‘z’ sounds just showed up recently, and he seems to be enjoying trying them out.

Of course today being what it was, a couple of times what I assume was “Daddy” came out as “die-die”, which was a pretty fitting description of the day.

We took today off from school and had a day of rest, though I personally could have rested better on my own. We also have tomorrow off because of Veterans Day. I hope to God he’s better by Wednesday. Missing too much school throws everybody off, including the students in the class who seem very aware when one of their number is gone a while. The Autistic Gang of Five that make up his class are getting thick as thieves, so being down a man or two definitely impacts the havoc they can wreak!

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If somebody knows of some spell - like from Harry Potter - that will automagically cut a terrified, frantic kid’s hair, we’d love to hear it.

We’ve long since given up going to the local kid haircut place since J-Man just screamed bloody murder, scared every kid in there, and required six people practically sitting on him to get through it. They were GREAT sports about it, and we’d recommend that haircut place to anyone, but we figured we could pull out our own clippers and just have him scream bloody murder in the comfort of our own home.

We now buzz his hair really short so we can go many weeks until we have to go through this again. He was just so scraggly that we couldn’t wait any longer.

It kills us to see him that frantic and upset…

That’s how we spent our evening. Yay.

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I’ve been reading Unstrange Minds by Roy Richard Grinker, which I think should be on most people’s reading list. I saw this powerful passage and felt like I had to share it here. He’s talking about his autistic daughter, Isabel. I think his message speaks for itself.

Isabel has taught me that the unexpected, even the beautiful, can emerge even from the undesirable, like a lotus growing out of the mud, its beauty and purity unsullied by its origin. That beauty can be found in a single person, inside of whom there is something — no, not something ‘normal,’ but a brilliant light or an inner truth struggling to blossom.

So when people pity me for my daughter, I don’t understand the sentiment. I work hard for Isabel, but I don’t regret it or feel sorry for myself. At the end of the day, when I tuck her in, she’s not a case of autism, or even a child with social deficits and language delays. She’s simply my daughter. My job is to clear the land for whatever growth is to come, even if, sometimes, no one else believes it will happen.

(Unstrange Minds, p. 35)

Amen.

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OK, as geeky as I tend to be, the whole social networking site thing hasn’t particularly been my cup of tea. Most of them are black holes of uselessness in my opinion. I am kinda digging Facebook, though. I’m running into people I haven’t talked to in years.

So, let’s try an experiment. I created a Both Hands and a Flashlight Facebook group. This will give all you commenters and lurkers a chance to connect with each other, give a little support, chat, shout out encouragement, and whatever else strikes your fancy. We can draw strength from each other, and this is one way we can do that.

You should be able either to search for “Both Hands and a Flashlight” under Groups on Facebook or just try going to this address directly - http://www.facebook.com/group.php?gid=31630254519.

If something is screwed up, just post a comment here and I’ll see about fixing it.

Hope to see you there!

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Unless you’ve been living in a cave for the last couple of years, you likely have seen the puzzle piece that has become the predominant symbol of autism.

I’ll just come out and say it bluntly: I hate it.

If someone thought a puzzle piece was an accurate representation of me, I’d be pretty ticked off to put it mildly.

Admittedly part of it may be that the over-commercialization of it has become as bad as the Christmas season. Autism Speaks has once again discovered a way to jump the big swimming fish by offering us silver puzzle cufflinks in a “lovely black gift box”, helpfully categorized under “Glamourous Gifts” in their store. I think I just threw up in my mouth a little. Perhaps I could hurl in the Autism Camo Baseball Cap or the Logo Etched Champagne Flutes instead…

[Hint to Mary - This is not what I want for Christmas.]

I’ve been pondering this for months and am beginning to have a clearer way of expressing why this bugs me so much. Perhaps it’s because I think the puzzle piece symbol is all about us (parents, family, friends, medical professionals, educators, researchers, etc.) and not at all about people who are autistic. I’m really starting to question whether this is not a symbol of autism but instead a symbol of our own fears and uncertainties. I wonder if we’re the ones with the missing puzzle piece and whether we’ll ever feel at peace with ourselves until we figure out where to look.

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We now have President-Elect Barack Obama, and the two years of campaigning, all the incessant political ads, tens of millions of votes, the raw emotions of this day, and - regardless of how you feel about the outcome - the history we have now witnessed have quickly turned into just preamble. That’s about how long historic moments last in a country where things are a mess. Shortly, our TVs will return to idiotic erectile dysfunction commercials (which frighteningly I was starting to miss…) and we’ll get back to that sinking feeling of our economy being in the toilet (if we haven’t already) and all the problems the world faces.

He will hear from untold numbers of people representing countless causes. And with respect to autism and parenting and all the issues we face, we better get our crap together and commit ourselves to making sure our children are well-served as part of all of the changes to come. We know the challenges we and our children face everyday. It’s time to get to doing something about it.

For most of my 20s, I was pretty committed to the whole idea of single-handedly changing the world by eliminating poverty, disease, and war, and discovering cold fusion and the perfect cup of coffee during my lunch hour. I was somewhere between an overachiever and a mentally ill person with a savior complex, but at least my heart was in the right place. I crusaded for causes and put myself into voluntary poverty to give much of that period of my life to efforts I believed in. I dreamed really big; I was the poster child for people who wear their hearts on their sleeves.

The details of my life have changed dramatically since then, but though it may now burn with a different color and brightness than in those days, that fire is now like a focused laser. And God help anyone who stands in the way of our work on behalf of the three-year-old bundle of sunshine that fills our lives up to bursting everyday.

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If you’re an American citizen and haven’t voted yet, WHY ARE YOU SITTING THERE READING THIS?!? GO VOTE NOW!

No excuses. Vote! Call up all your friends and family and make sure they voted. No excuses for them either.

If the lines are long, STAY IN LINE! I don’t care if it’s raining, snowing, sleeting, or you’re attacked by a plague of locusts. No excuses. Period.

Vote!

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[One of these days, I'm going to finish writing a post about all the unusual things I do that would theoretically add points to my "are you on the spectrum?" tally. In the meantime...]

Tomorrow is my quadrennial data junkie freakout. I admit I get totally overstimulated by the onslaught of statistical polling data and raw vote counts that flow like water on Election Night. All the maps and returns and percentages and analysis is like some kind of crack for me. While I do have strong preferences about who wins (not telling!), I admit all the numbers and stuff are plain addicting to me.

Mary and I both have a tendency to know ridiculously atypical amounts of information about arcane topics. Mary is a walking encyclopedia of odd, and seemingly random, facts. I call her Mary-pedia and make circles with my fingers around my eyes as my version of sign language’s word for ‘nerd’. Of course, she has one particularly helpful kind of knowledge in the area of frontier and early American life. If I ever needed to churn butter or make a tepee, I know where to turn. Actually in the case of a prolonged disaster, we’d probably outlive our neighbors.

She was telling me all this stuff at an interpretive center in the Smoky Mountains on our honeymoon and people followed us thinking she was the tour guide. There was some older lady dressed in period costume on a front porch of a cabin - complete with the knitting and the rocking in the chair - and Mary bested her on several points. It was both creepy and slightly arousing, but that’s another issue.

For one of my great oddities, I confess my profane, extensive knowledge of professional cycling history. I find cycling - especially the Tour de France - to be the epitome of athletic drama. I totally narc out on races and results. I probably could recite frightening levels of stats about it for the last 50 years. It really does seem completely unnatural as I write this.

Makes me wonder if J-Man got a double-dose as our offspring. Who knows. Obviously there’s WAY more to autism than the possibility of having high levels of arcane fact recall - and that in itself can turn into a reckless stereotype - but it happens in some cases. How all that works out in our family genetics is a mystery.

It does make you wonder, what exactly did we pass on to our autistic kids anyway?

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In the book 1984, news articles, entire books, and generally anything recorded was rewritten by employees of the state to support the current, official stances of Big Brother. Then the previous, newly-heretical versions of those written-down things were thrown down the ‘memory hole’, a handy, desktop portal that led straight to the incinerator.

I want one of these.

My first nominee for the Memory Hole Awards? Rain Man - hands freakin’ down.

Why am I all in a wad about this now? Over the weekend, I saw parts of CSI: Whatever (probably like CSI: Sheboygan), Num83r$ (or whatever it’s called), and some other show fragment with a name that I can’t remember any part of. I could just refer to them as “Implausible, Unoriginal, Late-Night Crap”. It would be simpler. But there’s a point to this:

ALL OF THEM REVOLVED AROUND AUTISTIC PEOPLE DOING - YOU KNOW - AUTISTIC-Y-ISH-LIKE SORTS OF THINGS!? IN THE SAME WEEKEND!?

On I think it was Numb3rs, the character might very well be Dustin Hoffman’s evil genetic clone. I could be off on these specifics because I was too busy throwing crap at the TV to get all the details straight, but the character was such a terrible stereotype of an autistic adult that the exact details are almost irrelevant. He did things like hoard thousands of cubic feet of magazines, memorize every living or dead person with Emerson in their name, only eat when there were like seven crackers and seven martini olives on his plate, his evil relative took him to Vegas to count cards, he basically read barcodes just by looking at them or whatever, and - here’s the absolute worst part - spoke with the exact rhythms, inflections, and just about the same exact wording as Dustin Hoffman in that God-forsaken movie.

A while back I saw a show about the “Real Rain Man” (I think it really was called that). By the way, his name is Kim Peek, who interestingly enough, apparently isn’t autistic. But anyway, dear God that man - you know, a REAL PERSON - is infinitely more interesting than Hoffman or that movie.

I’m sure there was more to that Numb-erz episode, but I gave up in a furor. I have no idea how the episode ended. I’m hoping he slapped barcodes on all the main characters’ asses and had them shipped to Uranus.

Hey, here’s a fresh idea for TV show creators! Go meet some real autistic people and write about them! Amazingly enough, real people occasionally have much greater depth than these ripped-off, recycled, and completely bullchip stereotypes. Go sit down and learn from them!

And by the way, the first person who says, “Oh, like Rain Man!” to me in reference to my child or anyone else’s will lose all the necessary body parts needed for disseminating their genetic code, which will thereby save future generations from their offspring. Consider that fair warning.

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