Month: October 2012

31 October 2012

Halloween: Oh Boy is Right.

Yesterday I dreaded Halloween and it turned out to be…wonderful. Sometimes small town life is all it’s cracked up to be. Even with a costume that hides his face, our galloping, sword swinging Headless Horseman rode through town in a state of perpetual delight, and was met with friendly shouts of recognition wherever he went from people I would not recognize in broad daylight. The Police closed off and lit a few of the Main Streets in town and  dozens upon dozen of families wandered from house to house, most lit with pumpkins and some fully decked with cobwebs, ghosts and dry ice. The local grange had musicians on the porch along with the bowl of candy and just down the street a woman in a tuxedo shirt and pink wig whose home I have long admired said I should come back and have coffee with her sometime (really, who would say that to someone who showed up at their door on Halloween, and with the Headless Horseman, no less?). And just as we headed back to the car, a full harvest moon rose over the drumlins and floated among wispy clouds – just spooky enough. Happy Halloween. For real.

30 October 2012

A Different Kind of Storm

Hurricane Sandy may have passed, but clouds remain on our horizon. I’m not yet ready to post about our boy’s ordeal over the past couple of weeks, but as we stumble through the second day of weather-related school cancellations I see a furrowed brow and a short temper that prompts me to warn my younger son to cut his older brother a wide berth. Other families face much greater challenges from aggression than we, but I am so conflict-averse that even the rough and tumble of typical adolescent boys sets me on edge. We are all off kilter from too much TV storm coverage and howling wind and pouring rain, followed now by creepy cloudy silence and listless lack of routine. We know we are fortunate to have the power on and the trees intact – it wasn’t our turn this time but who knows what the winter will bring now that we have used two of our snow days.

We read on Facebook about some families taking delight in the drama of storm prep and others – the ones with kids on the spectrum – wary of how no power or school might unsettle their kids. We are somewhere between. My boy slept in the basement last night to protect his trains and animals from the perceived threat of the storm – his strong protective instincts run from cutting trees with Dad to carefully tending to his stuff: the Thomas trains stored in their sheds and Playmobil animals in the barns – even the portable DVD player that is the Sodor Drive-in theatre tucked safely away. Camping on the couch in his sleeping bag is part of what makes him such a beast today even though he came upstairs at dawn and finished his rest in our bed after Dad went to work, his feet looking for mine while he fidgeted in his sleep.

And as I write I hear the boys talk in warm tones and the sun emerges to cast a brighter, wintry light on wet fallen leaves and bare branches. The clouds are expected to come and go with maybe one more wallop of rain from the backside of the storm. We’ll proceed cautiously through today and look forward to the routine of tomorrow – which, I now realize, is Halloween. Oh boy.

17 October 2012

Who Could Ask for Anything More?

So. It’s a picture perfect autumn day and we are listening to Terry Gross on Fresh Air talk with Michael Feinstein describing his new book/cd about Ira Gershwin. Great program. They play a clip of a radio show in 1933 with Rudy Vallee and George Gershwin chatting with a little piano playing, followed a little later by a second clip of Ethel Merman singing “I Got Rhythm.” Our boy has been next to me in the car the entire time, tapping away on his iPod and soaking up the October sun; it’s been a long day of doctor’s appointments. The Merman recording, Feinstein explains, is from a tribute to George Gershwin that took place just after his death from a brain rumor at age 38. As Merman approaches the bridge in the song – “Who could ask for anything more?” – the boy turns to me and asks,

“Was this right before the Wizard of Oz?”

“I think so!” I reply, but when I get home I look it up because I wasn’t listening that closely. He was right. It was 1937. Oz was released in 1939. The Fresh Air broadcast made no reference to that film or its music but only (and ever so tangentially) to the composers who wrote some of the songs for it – Harold Arlen and Yip Harburg. The only other clues to the era might have been the melodies themselves and the accents – the Brooklyn/Boston/vaudeville kind of patter – both Gershwin and Vallee have voices that sound very much like Ray Bolger, who played the Scarecrow in Oz.

How is it – how is it – that some one who is not supposed to be adept at inferring anything can infer himself right back to 1937 at the sound of a radio broadcast and a familiar accent? Auditory processing deficit? Not today. Fear of music? Not today. Trouble making connections? Not today – at least not at this moment.

During the course of this busy day I jotted down at least a half-dozen moments that are worth writing about, but this is the stunner because it reminds me for the umpteenth time that , in our lives, autism creates so many more opportunities than we give it credit for. They are random, yes, and we don’t always know what to do with them, but they’re there, waiting to be noticed, valued and put into context. It’s kind of like a treasure hunt, every day.

Who could ask for anything more?

10 October 2012

Did We Do Something Right?

The lesson learned every day? That we don’t take the blame for what goes wrong and we can’t take credit for what goes right. We tried to accept a long time ago that most of what happens in life is out of our hands – and yet…years of data collection and analysis have forced us to look at evidence and then try to predict outcomes. We are compelled to try and control whatever is within our grasp, no matter how slippery.

So now we have this explosion of language and introspection and creativity and we cannot resist the urge to ask, “Did we do something to make this happen?” Maybe. Somewhere out of the many new situations that life gave our boy, a window opened, a breeze blew through and the seeds of success landed and took root. We created some of the circumstances (camp) and others decidedly not (the loss of JM) but at this moment we see a sense of strengthening purpose and engagement and the hope it brings leaves us blinking in the sunlight.

We know it might not last in its current state – I don’t think we will ever be free from regression. And we all regress sometimes, learning from those same mistakes again and again (Why did I eat that? Why did I say that? Why did I drink so much of that?). But when fundamental skills – like speaking in paragraphs instead of phrases – ebb and flow we find we will do anything to keep that window open and the breezes flowing knowing full well we could wake up one morning to find it closed. The prospect of losing something so hard won triggers every possible human response: hope, fear, optimism, cynicism, love, faith, superstition, luck, magic, and faith – all tempered by what can only be called PTSD. The shock and awe of those early years can return in an instant when he looks at me and his eyes are blank and he is seeing only what is inside his head.

But thinking about it now won’t make it happen – and it won’t fix it when it does – so I will be thankful for the gifts we have today and have faith that they will still be there when we wake up tomorrow.