Monday, May 31, 2010

From Autist to Artist

I have, on occasion, sat in the park chatting with a stranger and felt compelled to reveal: “my son is Autistic” and had them mishear me. “Oh, my son / brother / nephew is very artistic, too, isn’t that wonderful?” and I don’t know what to say.  I hate to pop their happy bubble, am glad they have thought my son typical enough to pass for just an oddball artist and not a totally weird special needs kid. Odd behavior is, after all, accepted from artists.  And the greater the talent or fame (not necessarily the same thing) the more leeway is given, the more deflection from normalcy is tolerated.

And then sometimes, I think: “can he be both?” and “what’s the difference anyway, and where is the path across that great divide?”

Quite a few years ago, when Jacob was just three and a half, I was looking for a good special ed pre-school for him, and had brought him in to the Child Development Center (CDC) for his interview/playdate at their therapeutic nursery school.  It had not gone well, and they rejected him for their program for not having enough “social interest” in the other kids.

Oh, if they could see him now, he won’t leave other children alone, pestering them to play with him, to answer his repetitious and often tangential questions.  Jacob is a seething cauldron full of social desire currently mis-matched with a thimbleful of social skills. When he wants to engage another child and can’t think of what to say, Jake will go up to him and purposefully belch in his face in and then laugh.  It would completely delight him if somebody, someday would just burp him back.

But back to the CDC playdate gone bad.  It was one of those rare early spring days winking a big hint of summery heat to come.  I had not known how long we would be out, and had canceled the rest of Jacob’s appointments for the day.  At the time his days were full of various therapies, all the time, all day long.  Jake had a schedule that had to kept on the computer, adjusted and printed up weekly, posted on the wall and distributed to all, so he could make every appointment.  40+ hours a week of ABA, Speech, OT, PT, Counseling, SEIT: Jacob had, and was, a full time job.  But this day was cleared, free, a total rarity. A gift.  And I decided to revel in it. 

The CDC was on 57th Street, right by the southern edge of Central Park, so there we headed. Crossing 59th Street we encountered the many horse drawn carriages that tourists engage to whirl through the park and I thought “what the hell”, told Jacob to pick a horse.  Our driver wore a worn thin “St. Paddy’s Day Pub Crawl” t-shirt instead of the fine coachman livery of some others, but he seemed pleasant to Jake so we climbed aboard.  I knew money was tight, as ever, and I certainly could have found a “more appropriate” way to spend 35 dollars, but I wanted to indulge Jake for once in a regular kid special thing.  This wasn’t therapy, it was fun, and he, we, needed it.

After a long slow pleasant clopping meander through the southern reaches of Central Park, we were left off on the East side, and I decided to just wander together through the park vaguely West, since that was the direction home.

We are walking slowly, no agenda, no hurry, through the lower edge of the park, when we skirt by the Wollman Rink which is currently neither beast nor fowl, post skating season, but not yet transformed into the Victorian Gardens amusement park (which I recently wrote about in this post for the NYC Moms blog).  Work is being done and there are some single bricks laying about, castoffs from some project or other nearby. Jacob sees one and picks it up.  I don’t see the harm, so I let him.

It becomes his favorite toy, his new best friend.  He carries it throughout the park, won’t let me take it back from him.  And then he puts it down on the edge of the path, half on the pavement, half on the grass, and flings himself down to lie flat, gaze at the brick up close and view the world around him through the lens of: brick foreground, Central Park splendors behind.  He picks the brick up, carries it a few feet to a new vista and repeats.

And I am struck by how engaged in this project he is.  He is seeing the world through this unique filter and he is so enthralled by it.  And it bowls me over, how intense is his love affair with this seeming ordinary workaday object: a brick.  How basic, solid, utilitarian, we see them every day with nary a second glance, and yet to him it has become a thing of beauty, special and precious. 

And then I think: Isn’t this what artists do? Take things we pass by, think nothing of and hold them up, say “look at the wonderfulness here, the splendor you didn’t notice”.  It’s what my father did as a photographer, made you look at that man working on the street, that lovely junk on a junk man’s table, debris discarded on a city street, and see the extraordinary beauty there in the ordinary.

I think of the Dadaists, who specifically chose pedestrian objects and held them up claiming “it’s art if I say it is”; Duchamp’s urinal the most widely recognized example of this oft scorned and vilified movement -- but we still remember and talk about it, it’s influence carrying on thorough the generations, giving birth to new art forms and bad music videos alike.

And I wonder: what is the wall, the membrane, the line in the sand that represents the magic threshold that Jake would have to step over to cross from Autist to Artist? Because if this intense attachment to everyday objects, having a unique vision of them, even carrying that over to obsession, if this all is a hallmark of the Autistic and the Artist alike, what separates them? 

I think of many artists becoming obsessed with a particular image or object; story or subject and painting, sculpting, re-creating that over and over in different ways, repetition with variation but still, holding onto the thing until its meaning has been wrung out, exhausted, and still going back to that well again: Monet's water lilies, Frida Kahlo's self portraits, Rothko’s rectangles.

When an autistic kid re-creates the same thing over and over we call it rigidity and try to break him of it, but when a great artist paints the same thing over and over, we call that her signature subject and marvel at her ability to see things new again whilst stumping along a worn and familiar path.

It is interesting to note that the very first of Marcel Duchamp’s found object creations (which he called "Readymades") was a bicycle wheel, which he mounted upside down onto a stool in his studio. He would spin it occasionally just to watch it, claiming "I enjoyed looking at it, just as I enjoy looking at the flames dancing in the fireplace." Hmm, sound like anyone else we know?

And the answer is, of course, communicative intent.  For an Artist, no mater how narcissistic, wrapped up in himself, withdrawn and solitary, the creative impulse is still connected to communication, the desire to share one’s uniquely warped vision of the world with the world, or at least one other individual in it. The Autist, on the other hand, is most usually happy to lose himself in the objects of his fascination, to commune rapturously alone with their beauty. 

The interesting thing is that Jacob has changed so much in this, now.  He is straddling that fence that separates the autist from the artist, he has bucketfuls of communicative intent. Were this to have happened today he would not want to be alone with his lovely brick but he would be taking me by the hand, dragging me down to belly up to the pavement with him, close one eye then the other to see how the brick relates to the background.  “Look, Mommy!” he would say, as he does so often now, pointing out his world to me, wanting me to see and marvel with him at what has caught his fancy.  That “with him” part is the big brass ring, and I am over the moon that Jacob now has it firmly in his grasp. 

It’s called “shared attention”, and if your child is developing typically you don’t even notice it as it kicks in around 9 months, certainly by a year.  You point to a bird and your baby cues in to your gaze, his eyes follow the direction of your finger and he looks where you’re looking, smiles when he finds the birdie.  Your toddler picks up a pretty rock and brings it to you, proudly sharing her treasure.

Jacob did none of these things at that tender age. But he’s here now, sharing attention in spades, and I bow down to kiss the feet of the goddess of neuro-emotional development that has allowed Jacob to walk this path, step by step, from Autist toward Artist.

Photo Credit: Jim Steinhardt  "Girl with Balloon at Central Park Zoo" 1963
(yes, that's me)

Wednesday, May 26, 2010

Momsomnia strikes again

NOTE: This post originally appeared on the sadly closed NYC Moms Blog.

Maybe it’s those peri-menopausal hormones (the 3 month countdown to 50 has begun), or the to-do list not done, or all the coffee that gets me through the day, but I have been up in the middle of the night waaaay too much lately.  

I thought when my father passed, things would finally ease a bit, that some of it the insanity would finally release, but that seems to have actually ramped things up instead.  Everything I put on the back burner to care for him and support my mother in his final, faltering, increasingly dependent months is now aflame.  

My children really need me present and I am swimming back to them slowly through the muck of feelings long pushed underground to just grind through those last gruesome, awful days.  Two months since he has died and I have really just begin to mourn him. 

The biggest flaming pile in my life is that my son with special needs, the one on the Autism Spectrum does not have a school for next year. Yes, you heard that right, it is now MID-MAY and I have no idea where he is going to school, nor how it will be paid for.  We are transitioning in the middle of elementary school, which is none too easy.  

Friends ask “Can’t he just stay where he is?” and I want to bang my head into the wall (wait, who’s autistic now?)  Hindsight is always 20-20.  No, he can’t, he’s in a school that only goes K to 2, forcing a change at this point.  

We had been hoping that he’d be ready now to go to his twin brother’s public elementary school, which has wonderful CTT classes (for the laymen: Collaborative Team Teaching by a Special Ed and regular teacher, kids w/ IEPs integrated into the regular classroom), but no such luck.  He still needs more support and a less chaotic environment. So here we are in limbo.

The school we really, really want for him, which would really be a great fit, has absolutely no spots for a 3rd grader next year.  Were a space to open up (it could happen) we’d be jockeying with about 50 other kids for that one spot. And if any of them are girls, forget-about-it, they’re in, we’re toast (since so many more boys than girls are on the spectrum, schools need girls to keep the classrooms balanced).  

And at the point this past fall and winter when I should have been blitzing every Special Ed school in a 50 mile radius and putting on a full court press I was coordinating my father’s palliative care and holding my mother while she sobbed and cabbing cross town at 2 AM to pick my Dad up off the floor, again, and …. well, you know.  

I wasn’t a total slacker, I went on tours, I filled out applications, but the competition is so fierce and getting the right school for my son is such a tricky business, it needed my full on, laser beam attention, and that just wasn’t there.  So now I am playing catch-up and calling in all callable favors, and praying a lot to the gods of Autism (whoever you are) that this work out for Jacob, because he is an amazing, bright, sweet boy who will sink or swim next year depending on finding a school and teacher who “get” him. 

And let’s not talk about the mess that is my apartment (I’m not saying we’re giving the Collyer brothers a run for their money, but it’s getting close) or my other son’s issues with homework (DO NOT GET ME STARTED) or the 15 lost pounds I regained this winter (why did I think it a good idea to give away all my summer fat clothes?) or ... I could go on, but I’ll spare you.

Momsomnia, it’s a bitch.  So someone please get my son into a great school, throw out all my piles of crap, and come cook healthy food for me and make me run 5 miles to get it.  Then I can get some sleep.

Sunday, May 23, 2010

A little navel gazing (goes a long way)

Yes, yes I know, it has been a long while since my last blog post. Time, which seemed to slow down to a trickle and crawl while my father was busy disintegrating and dying had now sped up scarily such that I am blinking away whole days. I breathe in and out and a week has passed – how can that be? I have done nothing, not even a mere tenth of my endless Sisyphean to-do list has gotten done, yet still I’m busy, breathless, spinning and spinning, not ever still, except to sleep, and that not near enough (for more on that see my NYC Moms blog post “Momsomnia”). But while my whirling dervish act seems to be moving me no closer to my goals, it’s keeping me from slipping back into the abyss.  So I’m spinning on, whirlpooling all the needs swirling around me: Jacob needs a new school; Ethan needs lots and lots of attention; my husband needs a wife (hey, so do I); my apartment needs cleaning and de-cluttering; my mother needs everything; and I need to get seriously un-stuck.

I’m in limbo, but it’s a busy, noisy limbo: I have (god help me) joined Twitter and am figuring out where I belong in all that. My twitter handle (“handle” I am tickled by the retro 80’s CB trucker feel of that) is @squashedmom, if you must know, and I may or may not continue to travel there much. When you have an obsessive personality like mine (yeah, I’ve finally figured that out about myself) it’s either all or nothing, and I’m not sure I need to get lost in the chatter all day long. What drove me to this is that I’ve recently joined the NYC Moms blog group. Through them, I have been plunged into the “mom blogger” universe which is vast and interesting and full of awesome women, and an incredible potential time suck. I don’t quite fit in and don’t quite not fit in. The autism and the whole dead father thing make me a bit of a drag, the pouty girl at the party. I want people to like me, but I’m never going to be an “it” mom, whatever that is.

I still have all these half written posts crowding my brain space, just dangling in the computer, but I haven’t been able to finish anything. I have nothing ready to send out, yet strongly feel the need to fill some space, keep this blog thing going, mark my territory, say “I am here”. So here is my first post about nothing. Nothing but my feelings, which are, I suppose, something, but I don’t assume enough to hold anyone’s attention for long, so I think I should stop before I begin to bore even myself. A little navel gazing, I suppose, is not a terrible thing, but I promise it will be followed up by something about something, soon.

Sunday, May 9, 2010

Bring on the Broccoli

There is a subtle war going on in my house over those green things on the plate. You know: vegetables. When you have children, even if you’re all modern and psychological minded, it’s still hard to not somehow expect them to be little carbon copies of you. Well, in my case carbon copies plus a y chromosome here and there, since I have two boys.

I was a child with wide and adventurous tastes in food. I loved vegetables. Asked to name my favorite foods, alongside the requisite M & Ms, burgers and peanut butter, I would have put artichoke, avocado and asparagus on my list. And that’s just the top of the alphabet.

My twin 7 year old sons, however are another matter. Food is a complicated issue in our house. Before they were born, (OK everyone groan now, we all remember the things we swore we would NEVER do that we find ourselves doing on a daily basis for survival) I just knew I was going to feed my children only healthy foods: lots of vegetables and fruit, no sugar or chemicals, etc. etc. Not quite a member of the anti-junk militia, lets just say that I’m no stranger to the organic section at Fairway, and my local little health food store is near and dear to my heart, and wallet.

When they were babies and I could control every bite that went into their mouths (the occasional purple crayon notwithstanding), it was 90% organic and all good: lots of veggies, low sugar, low sodium, no artificial anything, yadda, yadda, yadda. Though it was clear that one twin, Ethan, had a sweet tooth, greatly preferring the fruits to the vegetables, the sweet to the savory, they still pretty much ate what was offered, hungrily and happily.

But then life happened. They became two year-olds. With opinions.

Then Jacob was diagnosed on the Autism Spectrum, and at three went on a special diet that made a huge difference in his physical and mental health, but created a royal pain in the ass in the kitchen. Because Jacob’s diet was now gluten and casein free, which to civilians out there means no dairy, no wheat or other gluten containing grains (like almost all other “normal” grains - oats, barley, rye), he needed special foods bought and prepared for him. And everywhere we went I had to carry a ton of food with, because you never know what’s out there and Jake is a hungry guy. Pizza, that birthday party staple: pure poison.

Some families go all gluten/casein free (GF/CF) when one child needs to, but besides the fact that I love blue cheese too much to do that, Ethan would have starved to death. Because he is, you see, a classic “picky eater” who thinks vegetables are evil and would live on beige food, if at all possible.

Ethan once turned his nose up with disgust at a wonderful meal I had prepared, and delivered his judgment “That’s not kid food!” with a precise mix of disdain and dismissal that was so precociously teenagery, I almost dropped the bowl.

Where he got the notion that there is a specific entity out there - “kid food” - and that he has the right to demand being fed that and only that, all the time, I will never know. It consists of things like chicken nuggets, french fries, bologna, hot dogs, bagels, string cheese, goldfish crackers, chocolate milk ... you’re getting the picture. All those things I’d sworn would never cross his lips, let alone become the mainstay of his diet.

I promise the processed meats he eats are all organic and nitrate free. At home. Just pretend you’ve never seen me buy my hungry kid an occasional hot dog from a vendor in Central Park, OK?

I thank my stars that Ethan really likes fruit. Well, some fruit. OK, apples, peaches and grapes. OK, Granny Smith apples - peeled; yellow peaches - when they are in season and really ripe and only with the skin ON; and green grapes with absolutely no seeds. Did I mention he’s a picky eater?

Jacob, after happily devouring whatever we put in front of him for the longest time (did I mention that for a kid on the Autism Spectrum he is amazingly flexible, easy going and compliant, it’s my “typical” one who is more high maintenance), then started to have opinions about what he would and would not eat at about three and a half. When he would so clearly say to us “I don’t like that” about a food, how could we not positively reinforce such great communication by honoring his request and removing the offending item from his food repertoire? Unfortunately, almost all vegetables soon fell into this category.

Lately, though a miraculous thing has been happening: veggies are back in! It started last year when he was obsessed with the Wonder Pets. They ate celery – so Jake ate celery. And now, thanks to a cute little PBS web video he watches over and over, Jacob has been asking for broccoli and carrots every day. It makes me so happy to steam his broccoli for him, I can’t wait to see what’s next on the vegetable agenda.

Ethan at this point is still a hopeless cause. I take heart from what a friend with grown children told me. Her three boys were all kid food aficionados and vegetable avoiders like Ethan when young, but they grew up and discovered girls. Sophisticated New York City girls who were not impressed by Neanderthal males who would not eat salads and dissed all things green. By the time those boys came home from college they were chastising their mother for not stocking their favorite vegetables in the house.

So therein lies my hope for the future. To think that Ethan might one day yell at me for not providing him with swiss chard… well, a mom can dream, can’t she.

NOTE: This post originally appeared on the sadly closed SVMG NYC Moms Blog.