Today is World Autism Awareness Day and April is Autism Awareness Month. A big deal in the autism parenting community.
I am, as is usual these days, a busier than busy bee, slammed to the wall with things that MUST BE DONE. And a long school vacation is looming later this week.
But I could not let today pass silently, without notice on my blog. It's just too important.
Jake is now one year older, evolved and evolving; his conversational skills and artistic talents just bursting forth, more and more amazingly every day.
And he is still, and will likely always be, on the autism spectrum. A unique boy with a unique brain; a singular perspective on the world, which, thankfully, usually delights him.
I love Jacob with every fiber of my being.
But I hate that he struggles so mightily with language, with expressing himself, and sometimes with just simply understanding what people are saying to him. I see the efforts in his eyes; sometimes I swear I can watch his brain attempting to process. And then I see the pain when it just doesn't compute, and he switches off.
I hate that his relationship with his twin brother, Ethan, is so difficult and fractious. I know that this too will evolve, but it has been a thorn in my side for so long now, it is hard to imagine anything other than the state of fraternal siege we live in.
I worry about his future in so many ways. I want him to have the biggest, fullest, happiest, most independent life possible. I want him to always be surrounded by love.
But I know how harsh and cruel the world can be for those who are noticeably different.
And as much as I am alarmed by the statistics that have recently come out, how autism is on the rise as a worldwide phenomenon and is just increasing and increasing annually with little end in sight?
I am also weirdly comforted by knowing that Jacob will not be alone. That he will be be coming of age as an adult into a world increasing filling up with others like him, and the world will HAVE to change - and will actively BE changed by the higher functioning of his brethren - to accommodate Jake and his people.
I think about the connection between art and autism a lot. About how outside the box, committed to their singular vision both the artist and the autist, each in their own way, are.
I've been doing this for a while (see my best known post "From Autist to Artist") but it's been circling round my brain a lot these days, as Jacob's artwork has really taken off lately. Into the stratosphere.
If you've been following my facebook or Twitter streams you may have seen some of these:
"Bruce Wayne"
"Goku" (From Dragonball Z-Kai)
"Commissioner Gordon"
"Goku" (Again)
"Superman"
Drawing makes Jacob so happy. Time to draw is his big reward at school, and it's a great carrot. You don't want to know how fast we go through a ream of paper these days. And I'm not complaining in the least.
What I am most struck with is the emotion in the faces he draws, even more then the details of certain parts like the ears (the ears!), or the way his noses look like noses; the way he captures a mouth with one line - and it so completely is a mouth.
This flies in the face of so much common "wisdom" about autistic people paying no attention to faces, or not being able to read facial expressions for emotion.
When I mentioned this along with a photo of Jake's art I posted on Facebook, a cyber-friend, who is herself on the spectrum, responded with this really interesting reflection:
What this has to do with his autism, if it's mere coincidence or if the way he perceives the world through its filters open up the artist space in him, all this is unknown and probably unknowable. And ultimately besides the point.
I don't have any answers here. This is just me ruminating out loud, in public (blogs are so lovely for that). And also, truth be told, showing off, sharing some of my son's wonderfulness with the world.
Because Jake deserves to be celebrated.
I do know this: Jake's drawings are alive, in the way that mere renderings are not. They are art, and he IS an artist.
Jake is who he is.
A package deal.
An artist and an autist.
But mostly, he's just Jake.
My son.
<^><^>^<^>
I haven't been writing that much about autism here lately, as much as it suffuses our lives, and bits of it weave through almost every thing I do. The other bits of life have been more dominant.
But that's about to change. Tomorrow is April 1st, the beginning of Autism Awareness month, and Monday, April 2nd is International Autism Awareness Day. And just in time for all of this, the CDC has released new figures for Autism rates that are making big news.
I'm sure you know the new numbers, but if you've been sitting in a cave and haven't heard:
1 in 88.
(And for boys it's 1 in 54.)
And these are figures for 2008.
Four years ago.
(A limited 2011 study? 1 in 38. No I'm not kidding.)
So I'm going to be talking about Autism a lot this month, and you should too. Because it's not going away, and even if you don't have an autistic kid (or nephew or cousin) you are and will be affected by this.
And the autistic kids of today are going to be the autistic adults of tomorrow, contributing to and (re-)shaping our world. And figuring out how best to support them, how to establish a future world that nurtures and meets the needs of us all, really needs to be on all of our minds.
Oh poor neglected blog child, once again I am ignoring you for the one who screams the loudest. Listen to Your Mother is eating your lunch in blogging energy. We have near daily "Meet the Cast" posts going up, sponsors are coming in fast and furious and they need logos to be set and up and linked and... and...
But it is Wednesday today, glorious in its Wordlessness. So I can toss a few recent photos up onto a page and call it a post. Hooray!
Actually, we have a bit of catching up to do, folks. So here's the past few weeks in pictures Instagram (my latest addiction)...
First? A few weeks ago Jake asked for and got his spring haircut:
Before: Gloriously shaggy
Just look at those about-to-go curls
After: Handsome and proud
Ethan, on the other hand? No haircut yet.
Here he is the morning of his class's mock trial for their colonial history unit (love his creative teacher). He's the lawyer defending the British soldiers in the Boston Massacre, and really wanted to dress the part. Hence the suit and red power tie.
Ethan is bemused by the incongruity of fancy suit and basketball
Speaking of Basketball, the season has sadly come to a close. Here are the boys proudly holding their trophies at their respective celebrations:
And finally? Spring has come early to New York City this year. It seems like every branch and stem in the city has just violently burst forth into bloom. And I captured a few with my phone camera, because like my mother, I love flowers.
Enjoy the spring my friends! (The past few days' cold snap notwithstanding.)
Today is March 25th. But this is NOT a birthday post for my Father, now dead these two years. And twelve days.
He would have been 95.
I wrote a beautiful post for him last year. You can go read it, here - Not his 94th Birthday. I told a funny story about how he got his name, James, which was NOT the name he was born with.
In fact looking back in my archives to find that one, I was surprised to see how many favorite posts I wrote last March. I remember it as being a bleak month and feeling the weight of the first anniversary of his death (and my recent operation) bearing down oh so heavily upon me.
But I suppose last year, of that pressure some diamonds were born.
Not quite so much tihs year. I am hardly writing, here. The lumps of coal are not transforming.
The NYC Listen to Your Mother show, which I am producing, has pretty much taken over my life. Which is a good thing, a marvelous counter to all my self-absorption. And it's a wonderful show, a fabulous enterprise with amazing partners (Amy, Holly, Betsy, Ann, Deb, our NYC cast, and the entire gang of production teams around the country - I LOVE you!)
But it is also requiring a lot of workaday writing. And I am not a fast writer. So it's nearly all going there, very little coming back here. Lots of pragmatics. Very little creating going on. Sigh.
I am also hardly being a good enough mother, a good enough daughter. I spent the day locked in yet another homework meltdown with Ethan. We didn't go see my mother, who hopefully did NOT remember what day it was. (She didn;t bring it up when we spoke on the phone and so neither did I, figuring why remind her when all it would bring would be sorrow.)
And I know a big chunk of my blue today is the date. Weighing upon me. A date I loved for 49 years: my beloved Father's birthday.
Once a day to celebrate. Now a date for grieving. For missing. For looking backwards.
And I know I was lucky to have had him for so long. I have so many fatherless friends who lost theirs way too young, too soon, who never got to see them grow up or marry or have kids of their own.
And I know that as far as fathers go he was pretty damn wonderful, and I was lucky there, too. He was certainly not perfect, I could easily list his flaws as a man and father. But he was always gentle, and I always, ALWAYS knew I was loved, valued, cherished... and that goes a long way.
But today I am not feeling lucky. Just sad.
I want my Dad back. (And while I really want the one from my childhood who would vanquish all monsters, today I'll even take the frail one I was basically parenting, from his final, fading years.)
Just one more hug. (Not possible. Memory will have to suffice.)
Happy Birthday, Daddy.
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There's something new and different here today: I'm doing a review post, really my first. And, shockingly, it's NOT for The Hunger Games, which it seems everyone else is writing about today. It's about theater. I am never one to go along with the gang.
Last Thursday my friend Holly, along with her MamaDrama partner, Erin, brought some magic into my life in the form of an invitation to The Public Theater to see their latest offering, playing in their cabaret, Joe's Pub - the one man (plus band of 3) show: NO PLACE TO GO.
To call it brilliant and entertaining would be just to repeat the wonderful reviews it's been garnering in the press, including both a feature article and glowing review in the New York Times. Ethan Lipton, the playwright-singer-actor whose creation this show is (along with his collaborator, director Leigh Silverman) roundly deserves every accolade that is currently being heaped upon him.
If you live on a desert island, or anyplace other than NYC (= basically the same thing, right?) and haven't heard anything about this play, it's a semi-autobiographical work.
Based on Ethan Lipton's own experience, the show is about facing unemployment when the company he has worked at for ten years (on a part-time, perma-lancer basis) is relocating. We get to be inside Ethan's head as he revisits his history and feelings about this company and work in general, and as he contemplates his options and choices, and those of his co-workers, as the relocation proceeds.
And because Ethan is a musician, as well as a writer and actor, the story is told in a mix of prose and song. So while it's a play with music, it's not a musical in the traditional sense of the word.
For me the show struck home in so many ways, most especially as a blogger, because this play has so much in common with the best of blog writing: confessional, seeming raw truth, but in reality so carefully shaped, refined; and written by someone clearly in love with language.
It does what good blogs do: takes reality and makes it more real; in this case, making the truth even truthier by adding a bit of fiction - because in this story, the company is relocating not just to another part of the country, but to Mars.
This absurdist twist somehow makes Ethan's story more compelling. While keeping all the details, the ironies and petty indignities of his situation no less specific, real and relatable, it simultaneously elevates it to a plane of universality.
Thus it is no longer the story of his one man's job loss, but rather a tale invoking the tectonic shift of displacement we are all experiencing as the economic freefall in our current time requires us all to reconsider our lives and careers, to contemplate moves we might not have otherwise, ones that seem like, well, moving to Mars.
I would love to give you many more specific details from this show, share some of the many gems found therein, but I really can't.
I knew I was writing a review, knew I was supposed to be furiously scribbling notes during the show in order to jog my memory and write this review. But I just couldn't. I was transfixed, in the moment. I didn't want to take my eyes off his face, didn't want to remove myself from the experience, to take that step back you need to, to write notes for a measured review. I just wanted to go along with him on the ride. To be transported.
So I jotted down just three measly phrases - 8 words, of the many astonishingly fresh, biting, funny, brilliant things Ethan said: Gooey malaise - a turn of phrase he used to describe reactive depression, that struck me as perfect. Shitstorm coming - the refrain from a darkly funny song. Words first, then meaning - what could easily be the mantra of all those of us who are in love with language.
These will have to do.
An old theater professor of mine, Richard Trousdell, one whose wisdom well I find myself going back to again and again, used to talk about how we go to the theater to recognize ourselves, to see ourselves in others' stories and be transformed by the experience somehow. Or at least that's what happens when theater works, when it gets it right and the magic happens. (This aspect of theater that is sometimes called catharsis, but to him was even more than that, deeper.)
And this play? Yes. It gets it right. Very, very right. This is what storytelling does, when it does it best.
And while this is possible, can and does occur in the best of movies, it is fundamentally different in theater because there is the added factor of actual presence, of live human beings in front of you, not distanced by the intermediary of cameras, screens, editing; not displaced in time and space. Someone may record this, turn this into a film, and it may well be brilliant. But it will never be the same as being in that room with Ethan Lipton, the man, feeling his emotions as they pour off of him, in the presence of his presence.
And Ethan's presence is powerful, is tremendous, precisely because he is merely life-size, not larger than life. He is an appealing everyman while remaining very, very specifically himself.
And what he is, mostly, is a wonderful storyteller.
So if you live in or near New York City, run, don't walk to see this show. Magic like this doesn't come along very often, and it's only up for a limited run.
And, for my readers, a little discount to the show:
Use code NOPLACE for $25 tickets! By Phone: 212-967-7555 ONLINE: click here IN PERSON: The Public Theater Box Office, 425 Lafayette St.
And if you can't come see it, here's a little glimpse at one song from the show, 3-Tier Plan, not live but a lovely little animation, nonetheless:
Thank you, Holly and Erin of MamaDrama for this wonderful opportunity. Disclosure: I was provided complimentary tickets by MamaDrama, but all opinions are my own.
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Venus & Jupiter in the sky - so NOT in New York City
Tonight Ethan and I ran a little excursion after dinner. Just the two of us. When we walked out the door it was not quite seven o'clock. These days that means a sky full of light.
Added to the ridiculously unseasonable warmth, us stepping out of a March eve in mere t-shirts, and I was hard pressed to remember it wasn't a languorous summer evening, but yet a school night, and thus we had to execute our errand quickly and hurry home.
Besides, I had promised the upstairs neighbors with whom I had parked Jake that we'd be back within the hour, and I sorely did not want to abuse my favor currency with them, would surely be needing to spend it again soon.
Jake himself was delirious to be upstairs with his "best friends" -- the four year-old sister of a pair of brothers who are Ethan's good school friends, and their white terrier, Mac, with whom Jake is nearly as obsessed as he is with our cat.
Ethan and I were on a mission, because I had failed in my mom-duties today: I was to have picked up a particular book for Ethan, another in the once-seeming-endless Warriors series that we are now close to outflanking.
The latest installment comes out in April, and the one before that will appear in paperback the same day, when we will finally snatch it up. I adamantly refuse to purchase these throwaway books in hardcover, so Ethan is going to have to get over his aversion to the library if he wants to read that last one anytime soon.
We absolutely HAD to go to the bookstore because he had finished the last Warriors book in our possession the day before, and thus we were now in the dreaded state of NOTHING TO READ.
I will not mention again the hundred wonderful books, sitting uncracked in our apartment; forlorn, unbeloved, rejected out of hand. Ethan is a picky reader. But for that he is now these past two years an avid reader, I am eternally grateful. I will forgive the undeserved scorn he heaps upon those poor maligned tomes, for the joy suffusing his being as he greedily devours the chosen volumes.
Ethan is in high, silly spirits as we walk the busy Broadway blocks to our local Barnes & Noble, and I am grumpy, nursing a throbbing elbow that may be a cracked bone or terribly distressed tendon. No way to tell until I visit the doctor, which I have such a deep aversion to doing.
I don't mind doctors and their offices, really I don't, feeling quite at home there from the countless hours spent looking after my elderly parents' health. And I kind of like peering inside my body, the few times I have myself merited scans or x-rays, mysteries revealed in dramatic, if ghostly, black and white.
But it's the time I dread; the time, the time, the time I do not have.
And so Ethan skips and darts around me walking down the street, as much crazed mosquito as boy, as I protectively cradle my elbow and brood.
"Look at all the people out in the evening!" Ethan proclaims with wonderment, and I dive again into pointless regret that we are not living anything like the life I had imagined, filled with evening family strolls and nighttime explorations of the city.
Jacob does not like to leave home all that much, and to be out with Jacob and Ethan together is most often a form of torture. I must steel myself for it. I must have some wealth of resilience in my bones, some stored reserve of calm and good mothering at the ready. There are days when I can and days when I can't and today was decidedly in the inconceivable column, my tanks in the red zone, surely running on fumes.
<^>^<^>
Mission accomplished, book in hand, Ethan and I pushed through the store's glass doors into a city become near night, the sky's blue glow nearly extinguished, the streets bathed in yellow-orange incandescence.
Turning west to walk the two short blocks to Riverside and home, the brightest of stars appeared in the overhead sky. Not stars, planets: Venus and Jupiter blazing, blindingly bright in the deep cerulean sky that slices between the highrises, thankfully not obliterated. These two gods are in a much celebrated love fest this March, a conjunction the likes of which will not manifest again until next May.
And yet, while they appear to be quite close, kissing distance on the Ides, they are in fact not truly crossing at all. It's just an artifact of our perspective, the way they look from here on our own dear mudball.
They are in fact deeply distant from each other, Venus lying sunward from us, drawing us in toward the heart of our solar system, while Jupiter circles round us from the outside. To gaze upon Jupiter is to reach out toward the distant galaxies and the universe's noisy edges at the jagged beginning of time.
I do not like that my children are distant planets, each locked into their own distinct orbits, occasionally approaching but never truly crossing paths, both merely circling 'round me, their sun.
How I wish instead they were more like a double star system, like so many of the other twins we know: circling each other, at times closer, at times more distant but always in orbit, one about the other; connected, entwined, hurtling through space as one.
But I must, as ever, resist the siren pull of the "what ifs," of the dark matter that draws me to its crushing embrace.
I must instead stay here, in the now, in the track of my actual sons.
The one who lives on planet Autism.
And the one who does not.
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On Sunday, March 11th, waaaaay too early in the morning (especially considering Daylight Savings Time had JUST sprung us forward an hour!) we gathered the tribe and held our first rehearsal in a small theater on Manhattan’s Upper West Side.
While Amy, Holly and I had met and spoken with each member of the cast, for everyone else it was their first time laying eyeballs on each other, a first date, as it were. And in spite of it being rather much of a blind date for most, it couldn’t possibly have gone better.
Except for the part about standing in front of the building, waiting in the cold for the theater owner to realize it WAS Daylight Savings Time and he had to be there to let us in an hour earlier than he’d THOUGHT he had to.
However, it seems that shivering together helped to create an instant connection (the bonding powers of shared adversity?) as when we repaired to a local coffee joint to wait in relative comfort, a cohesive unit was already forming.
After taking care of introductions and practical business at the coffee shop, we were able to enter the theater and begin to read our works aloud. And then, there was magic.
Even though we were our own audience, reading just to each other, the power of our words shone through.
We were all different, our stories were all unique, our own. And yet in the telling and the listening I could see, could feel the glistening thread bonding and binding each to the other. The quilt of our show was being stitched together, each story a square of specific beauty, creating a wondrous whole that is much more than the sum of the parts.
I’m not going to tell you what our stories were. That’s the wonderful surprise, folks. You’ll hear them on May 6th, if you can come in person, or soon thereafter on the ‘net.
But I can share this: we laughed, we cried, we were moved in all the ways storytellers can move us. And when it was over we left so impressed by the company we were keeping, by the power of our words, and the brave people who are willing to share them.
I was beyond proud to be a member of this troupe, and I know for certain that everyone else in that room felt the same way.
(And yes, this is the SAME post here and on the LTYM-NYC site. Call it being efficient, not lazy, please.)
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