Monday, February 27, 2012

The Characters that carry

Yesterday I went for a luxurious early trail run and - thanks to NPR and it's cheeky coverage about the upcoming Oscar's - I amused myself by thinking about how some famous actress in California was getting ready to be buffed to a high shine, while I was freely perspiring on a mossy-green hillside in North Carolina.
Then that led me to think about this year's movies and characters I had seen and that I had liked.
And that led me - I love how running with my feet, get's my brain out of it's linear logic, as well - to ruminate on the fact that my son, since a very early age, has always loved the lesser characters of any story he has been told.
We NEVER worry about where Lighting McQueen is (he is under the couch mobbed by dust bunnies, but we know the EXACT location of Matter, Ramon, Fillmore and Doc (neatly in the basket by the door to the living room).
My sweet little son can spend hours gazing into the plastic eyes of Gordon, the very able and hard-working, if at times narrow-minded other blue engine of "Thomas the Train" fame, and imagine where he has been and where he is going.
Thomas, meanwhile, lies forgotten at the bottom of the bin, holding his trains and tracks.
Gus - as if by premonition of his own abilities and limitations - is a champion of the supporting characters that allow the hero/heroine of the story to shine. Those that make the mistakes, or fix them, those who say something stupid only to be corrected, or something wise, only to be ignored. Those whose stories we are left to imagine, because we are almost always only told a few pieces of it.
It's as if he knows that without those supporting characters's small contributions, the plot, the story could not be advanced and the lesson would not be imparted, no matter how much the main character shouts, struts or postures.
It always tugs at my heart strings, when I see him give all his attention, imagination and care to that character, whether it is in a book, movie or even in real life. Gus illuminates that character few other little boys seem to want to be.
There is no Superhero Gus loves. Though he can now identify a few of them (thanks to a certain sweet cousin, several pairs of socks and a few superhero-obsesses boys at his preschool). When asked Gus says their names with little enthusiasm, then moves on to lavish his love on Mo, an itty-bitty dust buster who likes to clean up after WALL-E, and what he might say or do. His eyes light up, every time that little character comes swishing onto the screen.
I'd be in trouble if I tried dressing him in his favorite characters, but on the bright side, his favorites are almost always left on the shelves in the toy isles at Wal-Mart or Target - if they are available in the first place (we've never located Mo).
I have asked and prodded, and though our line of communication does not yet rise to the level where he could explain his preference to me, I sense that Gus likes the smaller characters, because they tend to speak less and appear in maybe just a few precious scenes. You have to wait, savor the anticipation. Work for it and be attentive and observant.
What draws us neuro-normals to the protagonist, the voice, the action, the fact that we get to stalk them in nearly every scene and thought, seems to be the very thing that disinterests Gus.
Heroes are common in his mind, I believe. A dime a dozen. Everyone else already pays attention to them. They speak too much. Move too busily. Are everywhere. Cannot be quiet or observant. Get antsy when marginalized. Could never be the bystanders. When I see other little boys compete over who gets to be the knight, warrior, prince, or superhero. I smile. I already know that Gus will never pursue being the man on the main stage. Never chase that elusive dream of being the main mover and pusher. The kind of dream that sets some of us up for a hearty mid-life crisis, when we realize we're not and likely never will be, while time is running out.
Gus will likely operate in the shadows, behind the scene, standing behind the curtain. Hopefully, in some way or fashion that suits his inclinations.
I feel he naturally knows where he belongs. Where he will shine - in his own way.
In a place, only a careful observer will bother to look more deeply. Where smartphone cannot be apped to go. But nevertheless, he will be doing his small part there to make the hero shine and the story move along.

I hope he finds happiness and fullfillment there. At least that is my prayer. I'm coming to understand that a deeply realized life neither requires fame nor fortune. It's a big lesson and I just learned it myself.

I remember two shreds of other peoples' words that fit with this theme and that were my favorites when I was a teenager - decades removed yet from being the mother of Gus.
The first is a Chinese Proverb, which essential says, "you can only see even the brightest stars when the night is dark"
The other is a line or two of one of the songs in the 3 Groschen Oper by Bertolt Brecht, that talks about how some people stand in the light and others do not. And how we see the ones in the light, not the one's in the dark. Simple but deep if you think about it.

Maybe those quotations I felt myself drawn to at a time when I listened to Madonna and wore my bangs up and out, were the harbingers of my fate and why I am now the mother of the biggest fan of all small characters.

I want to thank the academy of life and the higher power that be for giving me the role of my life.

Wednesday, February 22, 2012

A New Friend

Monday was - unexpectedly - a great day for me and Gus. So good, I'm worried that the rest of the week may not live up to it's fanfare opening to the week.
It started dull enough with me picking up an extra shift at the restaurant and making just enough to pay for Gus to stay in daycare for nap with a little leftover.
"Just enough for fish food" me and my co-server decided, making plans to let our 4-year-olds frolick in the late-winter sunshine at the nearby fish hatchery, where trout of all sizes vie for room and board - some of it provided by shrieking children, armed with quarters for fish food from the nearby dispensers.

What I couldn't have expected was how much Gus loved my co-worker's feisty little 4-year-old daughter, who didn't hesitate to lecture him on proper fish feeding, took his hand when it was time to go, and chased him with much delight along the adjacent little hiking trail. Gus' face showed it all. Amazement that this little girl loves getting dirty as much as he does, can throw rocks in the river like he can, and doesn't mind playing chase with him, even though he never chases...

We parted for dinner, but made plans to meet at the pool for a late evening swim. Gus couldn't stop talking about the little girl, making me reassure him that we would see her again.

When we got to the pool, she wasn't there yet - Gus looked in every corner and was about to check the men's changing room, when she appeared. He couldn't help but jump up and down on his tippy-toes.

They spent the next hour jumping in the water, holding hands, and helping each other climbing out.

Sarayd may never know this. But Gus did more cooperative play in those 3 hours spent with her, than he has in recent memory with anyone - and she made it all effortless and fun.

One great little therapist.

Wednesday, February 15, 2012

Child's Play

Watching neuro-normal children play - is literally a breath-taking experience for me. I'm taken aback by how realistic it often is. How dynamic, how imaginativ, how very gritty and complicated with human emotions it gets.
Some of it is downright mean and uncomfortable, like the time I watched a heavy-set black girl with bouncing braids, grab a hold of an obviously popular blonde at the playground with the question "can I be a princess?" only to be told - with a steel-cold appraisal - "no, you are a maid."
And I'm only talking pre- and elementary schoolers.
Gus' play is so much more subtle, often wordless, mostly noiseless and free of messy emotions. Heavily borrowed from books and movies, the narratives move along scripted lines that are strictly observed, sometimes down to who can say what and what toy can be used. He is easily entertained, can occupy himself well for hours at a time and never EVER tells me he is bored.
He does, however, have a heavy reliance on videos for inspiration for his play. Ever since we've been sick before and after Christmas (and during the holidays for that matter) we have slipped into a pretty heavy DVD habit, so much so, that that is often the first thing he requests out of bed in the morning.
It makes me sad, because this sweet boy, just a year ago, would nestle himself into my lap (regardless of what I was doing, sitting or standing up) and request to be read to.
True, I wanted to burn a few books, because we had red them endlessly, but now I miss the fact that he prefers movies to my voice.
Between the movie addiction and the fact that he plays in a highly controlled way, Gus is not a hot ticket in the local playdate circuit, almost all of his "friends" prefer to play with others - and I can't really blame them.
What has motivated me to beef up on the playful side of things - we do academic skills with "homework" already every day - is the fact that Gus is beginning to recognize and appreciate the idea of friends. He is excited when he sees them. He is sad when they leave - but for the most part, he is completely helpless when it comes to woe them with interesting play narratives. He has started to be tender with a Teddy Bear, talking to him like you would to a sibling or friend. I think it is his way to "practice" the whole confusing frienship thing.
I watched him today as two boys his age began to assemble a Teepee. He aimlessly wandered behind both, picked up a limb, but thought the game was about knocking down the rickety lean-to that the two had been working on.
Needless to say. He didn't make a friend today.
So with all that said, Gus and I are now enrolled in an intense 10-month program to learn to play. The program's goal is to give Gus better play skills to take on the road and their tag line is "be your child's best play buddy"
I'm dead serious.
I'm almost embarassed (actually, I'm not at all) to admit this, but I'm a lousy play partner. I'm not animated enough. I'm not silly, nor imaginative. Get me down on my knees and hand me some Hot Wheels or blocks and I go from witty to wooden. I ask Gus a million questions, I quiz him on colors, numbers, shapes, anything I can think of to make the play at hand, a boring academic lesson. I repeat things he says, haplessly and to make things worse, I instruct and come up with my own - perfectly boring - ideas of what we should play.
It's pittyful. And I now have proof of it.
A 15-minute video tape, made of me and Gus at play. It's all part of the play project we are enrolled in.
Basically, a very nice homeworker with lots of experience working with children with autism, visits us once a month and for three hours we play, talk about how to play and model play to each other. She brings toys. Gus already loves her.
And for the most part he stays with all the adult excitement we create around the topic of play.
Brooks (our homeworker) video-tapes parts of all this and then sends me a write-up/critique with the video and gives me oodles of suggestions.
Sounds probably is - at least to all you lucky ones out there with responsive children who are in close touch with your inner child.
I have neither.
So I need help.
And after just one visit, I feel like this is worthwile and we can benefit a lot from this.
What we learned so far is that Gus' echolalia (his huge storage of memorized phrases) throws us off into thinking that he can play at a higher level than he can really sustain (example: He'll talk about washing cars, but he doesn't pretend to wash cars...he just talks about it, while moving cars around).
Also, I need to stop teaching and instructing and be more sensitive to his cues (like when he turns away from me or refuses all eye contact). Also I need to work on being ANIMATED (yep, upper case for EMPHASIS!!!) and make it FUN (same deal).
Until our next visit. We are going back tot he basics. Play chase, ball toss, hide and seek, flashlight tag, crash trucks, fill up the dump truck with dirt and fake sleeping (this one is going to be Daddy's specialty) where we are supposed to fall into all sorts of silly sleep poses (complete with noises) and wait for Gus to wake us up (shrieking, startling) then fall asleep - silly - again.
It all sounds so silly, but even for someone as play-impaired as me, being able to play and taking enjoyment from playing is self-evident in its importance. It's how we practice interaction, prepare for tricky social situations. Modulate our behavior and most of all keep our imagination lubed up. Play is where everything starts.
I'm pretty rusty, but willing to be primed.
My goal is to give Gus a love of play and hopefully - somewhere down the line - a few friendly interactions with children, whom he will call friends, even if they don't ever think of him as a friend.
I have yet to figure out why a God, who cherishes a personal relationship with us above all, would create people like Gus, who can't relate out of their own volition.
But that's a topic for another post.

Monday, February 6, 2012



I've written on the subject of friends before and like many before me I'm mining said subject for nothing new but the known treasure - it's life-sustaining. My friends (the big people in this picture) make me laugh and make me think, they cry with me, they hug me, pat me, pray for me, run with me, watch movies with me, hike with me, splash in the pool with me and yoga with me. When nothing else seems to work, they pour me drinks, drink lattes with me or simply sit at my kitchen table and listen.
I love them. I don't know where I would be without them.
I don't want to know, where I would be without them.
Friends. Life's only true currency of wealth.

As for Gus. Friends is a slightly more complex subject. He has an idea of what friendship is. He wants it. He has a single friend (at least in his mind) and maybe a dozen more, who - when prodded by their mothers - will acknowledge him as a friend, though I'm sure he is not at the top of anyone's list for favorite playdate.
So for now, Gus is drawn to books where friends speak to each other, he wants the language of what one says to a friend and what it is one does with a friend. This is a hard one to teach a child, innately struggling with anything relational and anything so fickle and unpredictable as human relationships.
I watch him when he recites what he deems are the important lines on the subject of friends to himself. I comfort him when cries when his one friend, leaves too quickly or doesn't come home with us after the pool. He is so excited and happy when he "plays" with his friends, say on the trampoline or in another physical-no-words-needed activity.
I know he wants to be a friend and - if I can help it - he will learn how to make and keep a friend.
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Wednesday, February 1, 2012

Feel the Support

A week ago tomorrow, Jacob and I (and Gus, because they provided kid care) went to our first ever Parent Support Group. I went with a heavy heart, because somewhere in the two years since we got Gus' diagnosis, I have made that step a big one in my head - the moment I would admit that I needed support away from the real world - the world I so dearly love and want to be part of, even if that is increasingly becoming more difficult, as Gus' way of being is making him less and less popular for playmates and get-togethers.
The group was comfortable - against my expectations - a small cross-section of parents who were brave, determined, smart, desperate and above all eternally loving. We may not be able to explain and understand our children, but we love them. Simple as that.
Jacob and the only other father in the room, quickly began an aside conversation and I felt like, even if I didn't contribute anything to the group, I brought these two men together, they seemed comfortable in their whispered conversation.
I did take some comfort away from this group, mainly that I'm not alone. That I'm not failing as a mother and mostly that whatever causes Gus to be the way he is, is not within my control (I may have caused it, but no one can tell me - yet - what it is that I've done).
These mothers were varied in everything: Age, income, IQ, everything.
If you could see a group of parents affected by autism, it would give you a good sense of what makes autism so puzzling: We are so random and we have so few things consistenly in common and that's how children with autism are too. Not a one like the next one. Each with his/her own complex sets of likes/dislikes and almost no one can say anything with any authority about autism as a whole.
Other than that it is here to stay and confounding in every way.

For some reason. Where I am at right now. That's a comfort to know.
I'm going back to the next session again. Because each one of these parents seemed happy that we were there. I hope Jacob will come again, too. I know for a fact that the other Dad sure would like it.

I guess that is what support is.