The Agony of Repeat

agony of repeat

I love repetition. No really, I love repetition. No, really. I love repetition. If I say it enough times, I may actually believe it.

Georgia loves repetition. In fact, she’s pretty well wired to love it. There is much discussion and evidence that kids with autism love repetition. And Georgia is living proof. She loves to repeat sayings, jokes, words, phrases, noises and questions over many times. They don’t fade away or become lost in memory. They persist and are repeated.

She is a jokester and loves a single good guffaw. Or ten. Or one million. About. The. Same. Thing. Because, obviously, any joke that is good is good enough to repeat. Any song good enough to sing is good enough to repeat. (Trust me: I’ve heard the Wiggles’ Wheels on the Bus more times than all the accumulated toddlers in the world.)

And I’m not talking about a few times over a day kind of repetition here – oh no, that’s for amateurs. I’m talking about finely honed repetition skills, over many years.

Years? you ask with a doubtful expression …

Yes, years.

Georgia can ‘hook onto’ a new expression or new question and then really milk it for all its worth. For example, she loved to learn about the fact that iPods and iPads need to charge to get to 100% of their battery. Great thing for her to learn.

agony of repeatExcept she is now the most super-vigilant monitor of all things electronic in our house including those things that don’t actually need to recharge to 100%. If you put on an iPod or use your iPad, you’ll find a little person at your side demanding to know “Is it at 100%?” Maybe you’ll dare to, as I often do unthinkingly, answer in a somewhat cavalier way (and I assure you, you’ll only do this once) with a response like “Oh I dunno, maybe, it’s fine though. Not to worry.”

This in fact does worry Georgia. Immensely. In response to your unconcerned casual reply, she will then stand over you and do a full diagnostic diatribe, approximately once every 8 seconds, “What’s it at? Is it at 90%? What’s it at? Oh no, it needs to be charged! Oh no, it’s going to go kerplunk. What’s it at? Is it at 90%? Oh no.” (repeat)

According to Georgia, my nephew Chris apparently made some goofy noise about eight years ago, in Georgia’s presence. Innocently enough. The noise is something halfway between a deep low-pitched intake of breath and a horrible choking sound. The first time we heard Georgia making the sound, I nearly tripped over myself catapulting up the stairs to her room to save her little life, and Chris was torn between calling 911 and reviewing how to administer the Heimlich maneuver.

Georgia, however, was just fine – lying in her bed, laughing her head off and making this noise. Our reaction was probably the figurative nail in our coffin: she realized this noise was GOOD. Inherently and richly rewarding. Panic-inducing. Fun to make and hear, it produces satisfying rattling noises in your chest.

Dear reader, over the past eight years, we have tried almost everything we can think of to eliminate this noise from her repertoire: rewards, punishment, cold hard cash, salad (if you’re a regular reader you will know that is a reward for this kid), salami, threats, pleading and begging, visual cues, a poster in her room with a picture of my nephew with NO NOISE! written across it in red. We’ve even given her new substitute noises: “Georgia noises” — thinking we were being pretty smart.

Oh yes. She found a replacement noise, which of course has now become a supplementary noise following the terrifying choking noise. I can only describe this as a high-pitched prehistoric bird-like noise that will crack glass. Hearing this noise from another part of the house, through insulation and concrete, is still akin to having a small hot sharp ten-inch long rusty nail drilled slowly into your forehead.

* * *

When Georgia was a baby we lived on Shaftesbury – a lovely little street in midtown. We had some fabulous neighbours there, two in particular who made their house into a haunted house at Hallowe’en complete with a battery-operated ghost over their door that made a noise as you walked in. A noise I can only call a weird ghostly doorbell noise: “Bee-ooo. Georgia was barely a toddler in my arms when she heard that noise, as I carried her through the door. She’s fourteen now. Enough time to forget. To say good-bye to random noises. However she still, out of the blue, repeats that “Bee-ooo” noise, often accompanied by strange questions such as: “Mommy, is that the Bee-ooo there?” or “Mommy, it’s the Bee-ooo, right?”

The thing that amazes me most is that for 12 years I haven’t been able to construct a plausible answer to either of those questions.

About five years ago, Chris turned a deck chair over onto its side to drain the water off after a particularly heavy rain. Georgia, shuffling into the kitchen to eat breakfast, spotted the turned over chair. Well. This chair may well be the funniest thing Georgia has ever seen in her life. A. Chair. Knocked. Over. Okay, it’s perhaps a bit chuckle-worthy. Maybe. For a few seconds. If I really try to think about it.

Georgia on the other hand nearly peed her pants over this and over the course of a day, took a number of special trips through the house to view this hilarious scene. And uh huh. You guessed it. She has not stopped talking about this knocked-over chair for five years now, and asking me how funny I think it is.

FOR FIVE YEARS I have had every possible permutation of a conversation about a funny knocked-over-chair that one can have. It has been iterated and reiterated. I have been asked about how funny the chair is in the car, at the dinner table, out with friends, on a plane, with strangers on the TTC, upon surfacing in the pool for air, at 3 a.m., while coming out of anesthesia, in the bath, in the dental chair. “That was a funny chair, right, Mommy? That. Funny. Old. Chair. Right?”

Five years later, you can still induce peals of belly-laughter by simply whispering quietly in her ear, “Hey Georgia, you remember that chair?”

In the world, it seems that many things fall over. Shopping carts (hilarious), locked-up bicycles (tragically funny), construction signs (gut-busting), pieces of fencing (knee-slapping), toilets out for garbage on the street (okay frankly funny without being knocked over), garbage cans (side-splitting), and, our newest member of the collection of fallen-overs, the basketball net at school fell over once this year (absolutely priceless).

agony of repeat

Oh-my-gosh-that-silly-old-funny-basketball-net-in-the-gym-falling-over-was-funny-mommy-wasn’t-it-yes-it-was-so-funny was the single persistent topic of conversation for our entire car ride to and from our vacation this summer.

Sound kinda cute? Not so bad? Fun, in a way? Well.

Just keep in mind we do a 19 hour drive each way. That’s 38 hours in total. Thirty-eight. Just saying. And repeating. Again. And just saying.

agony of repeat - Life with Georgia

 

Life With Georgia Reflects on The Letter

AUTISM LETTER: NANCY WALTON ON THE HATE MAIL

Trust me – this is the most difficult column I’ve ever written for Life with Georgia. It may surprise you and it may not be exactly what you want to hear.

Plenty of media attention, radio and television air time and space on social networking sites has been devoted to a hate-filled letter to a mother whose son has autism in Newcastle, Ontario. You’ve seen it, I’m sure. But…if you’ve been living under a large heavy rock wearing earplugs for the last few days, here is a link to the story.

At first, I didn’t want to write about this. In fact, I didn’t talk about it much or post about it on Facebook. But when my lovely editor at Bunch asked me if I wanted to write some kind of response, I saw an opportunity. I’m not here to rant, or knee-jerk, to scream, vilify or to blame, but simply to talk. To talk about what kinds of things this letter asks me to remember.

G thomas, the autism letter

First, this letter asks me to remember sadness and compassion. For the woman who wrote it, for the family who received it and for the world in general. I’m loath to post the letter – or the words therein – on my social network profiles – in a world where everything goes viral. Somehow providing more attention to the words – and reacting with anger and rage towards the woman who wrote it – seems to feel not as good as it should. It should feel justified to react to a letter like that with anger and, as some have, a wish for karma to do its thing for the writer. Yet reflecting anger back with anger does not feel right. This may be, in part, due to my own career and experiences: first, training as a nurse and working in an acute-care hospital, doing graduate work in ethics and now working as a professor, teaching others how to be good nurses.  Something we teach and learn is that you’ll inevitably encounter angry, highly disagreeable people all the time – who are, at that moment, your patients – who you may not like at all, whose values are not aligned with yours and whose views or words you may find repugnant.

But everyone has a story. And somewhere in that story is a hint about why they ended up the way they did. As a nurse, I provided care to patients who expressed views or practices that I would not tolerate in other contexts: racist, homophobic, misogynistic views that were inherently misaligned with my own values. I cared for patients who struck me, who told me to fuck off, who sexualized me, who insulted me. I nursed others who I didn’t know well, whose values I never explored, and for all I know may have been murderers, abusers, or bullies. But I cared for them, talked to them, ensured that they were pain-free and comfortable as I would for any patient. I demonstrated compassion in the face of adversity and I challenge my students to do the same: to act with care and humanity to someone who you might think, really deep down, doesn’t deserve it. In no way does that condone their views or suggest implicit agreement – it demonstrates a kind of compassion that we need to keep in the world. It is what a nurse must do, day after day. And that practice has, in some way, spilled into the rest of my life.

The letter asks me to remember that there are many battles to be fought. My job, as Georgia’s mom, is to figure out which ones I need to fight. While I acknowledge that the content of this letter is extreme and terrible in terms of the reaction to a child with autism, I experience the range of reactions to the “difference” that is Georgia in the world every day: fear, discomfort, disgust, impatience, agitation. I’m okay with her differences. But trust me, a great many are not. Many more than you would think, hope or predict. I’m sensitized to it and never miss it. You’ve seen a view of her in this column that is cute at times, compelling and loveable. Yet this is not what everyone sees. Yesterday the cashier at our local Metro backed up from her cash register as Georgia approached, too close for comfort. Half-frightened and half-disgusted, she glared at Georgia who was drooling just a little bit with messy hair and a grubby face and t-shirt. On a regular basis, I experience the ultra hip, trendy downtown moms in Trinity Bellwoods – they must be cool with everything, right? – who are highly uncomfortable with my kid who is happily barking at the swing, or just standing and watching the other kids play. The mothers stare. They let their children stare. They shoo their children away from her. They catch my eye and embarrassed, they smile awkwardly. Occasionally, I have been known to inform them out loud that autism, as far as we know, is not yet contagious.

g and me old: the autism letter

The world is a cruel and intolerant place. There are people who write horrible letters to mothers of children with autism. There are others who vilify those who love people of the same sex. Some believe that those who practice a different religion or love a different god do not deserve to live. Others are sure that the lives of men are worth more than the lives of women and that female children should not be educated, valued or even fed. Some people abuse their elderly parents. Children are enslaved, victimized, mutilated, assaulted and killed. There are still those who believe that the colour of your skin makes you either a far better or a less worthy person. There are people who will beat a dog, drown a kitten or kill a random innocent young man because “they were bored”. From the random utterings of “hey retard!” or “hey fatso!” to the gunning down of those who have differing values, we live in a world in which hate, abuse, bullying, misogyny, marginalization, bigotry and discrimination happen.

Sadly.

I’m not saying that I simply accept these things. Not at all. Rather, I have to pick my own fights. If I got angry every time someone was uncomfortable with my child being around or wished desperately that Georgia was something else or somewhere else, I’d have no energy left for anything else. The fight would be monumental, constant and would flavour my entire child-rearing experience.

I do get angry. All the time. I recently stood cutting vegetables at the kitchen counter, sobbing with anger. I was listening to a CBC radio documentary on Betty Anne Gagnon, a woman with a developmental disability who was horribly abused by her family caregivers. The story talked about how her caregivers would punish her by making her drink Clorox, how they failed to provide Betty Anne with a life, with adequate food, or with love and compassion. How the system failed her, ignored her, forgot about her. This makes me angry. It makes me angry that there aren’t enough high quality, accessible services and safeguards for kids and youth with autism and the often-lost or neglected adults they will become. It makes me angry that our government can spend thousands of dollars on senator audits but fail to provide social services for the many individuals and families who just fall through the cracks. It angers me that so many people are raging about this terrible letter but so few understand just how badly our system consistently fails children, youth and adults with autism, and their families who struggle and deal with hardship without respite on a level that is, for some, unsustainable. This letter reminds me about just how much there is to be angry about.

The last thing this letter does is ask me to remember the compassion that I see in all the good things and the good people I experience all the time. The woman in the dentist’s office who didn’t mind that Georgia bumped her arm at least once a minute in the waiting room and was cheering for the Raptors (yes, in the dental office) too loud and too often.  The police officer who invited us into the horse trailer to pet the horses, out of the blue. The firefighter on the street who lifts Georgia into the truck for a look around. The shopkeeper on Queen West who takes great pleasure in offering Georgia a chair and a chat. My 86-year-old neighbour who tells Georgia that she is loved and presses a well-used Ziploc bag of too-old hard candy into her hand. The father with a baby, in a restaurant, who makes sure that he not only tells Georgia what the baby’s name is, but chats with her about the baby. Fellow vacationers who know Georgia loves a good splash in the pool and go out of their way to execute a quick cannonball jump in the deep end as they walk by, purely for her amusement. Our good friends who let Georgia run about their farm, walk their dogs and drive the tractor. Our babysitter who would lift up a car to free this kid. My family who embraces this wonderful girl and find great pleasure in her difference. All the surprisingly compelling and touching gestures from people who do not understand Georgia perfectly, but are willing to come a little closer. That is what that letter asks me to remember.

On Vacation, Just Like Everybody Else

PHOTO: NANCY WALTON

We just returned from our annual family trek to South Carolina. We vacation at a little beach-side place for a few weeks every summer and have been doing so for years now. I don’t foresee us tiring of the fabulous stretch of beach and sun-soaked weather; I suspect we’ll be back for many more years to come.

A friend asked me a few months ago where I was going for summer vacation. When I told her I was going to the same little beach-side place, her response was a crinkled nose and a question: “Hmmph. Sounds nice but boring. Why do you keep going back there?

Well, I’ve read a few ‘helpful’ online resources and articles on ‘traveling with a child with autism’. As with most things about autism, they tend to treat the ‘child with autism’ as if they belong to some completely homogeneous group. Advice such as “Try to seek out fun new routines!” and “Find space and time alone, away from others!” may be helpful to some, obvious to others and completely not applicable to the rest of the families of children with autism.

I have always relied mostly on my own intuition to find a good vacation for Georgia – and one that we’ll also enjoy – it is a family vacation after all. So, why do we keep going back to the same place?

Well, there’s lots of reasons. We love the weather. We love the sun and the Carolina-blue skies. We love the fresh shrimp off the shrimp boats and the watermelon and corn from the farmers’ fields. The boats on the bayou and the salt marshes, full of pelicans and herons. The pastel clapboard houses built up on stilts. The family-owned grocery store with wooden floors where you can walk in barefoot to buy a popsicle or a fresh slice of watermelon. Sandy picnics on the beach where saltwater pools hide, nestled in patches of tall grass. Sitting on the balcony in the late afternoon, with a glass of wine and gazing over a deserted beach, feeling like it’s yours. Lots and lots of reasons, but on top of all of those, there are a couple that really stick out for us.

The ocean. Beautiful and majestic, its lullaby-worthy sound is remarkably novel for Georgia. There is no end to the pleasure she takes in waves washing up on shore. Every day, Georgia wakes up, goes out to the balcony, and gives a little yodel at the ocean – “Those waves are sooooo funny!”

on vacation: georgia stares at the ocean from her deck.

The thing about the ocean is that is has a kind of equalizing effect on people. Everyone is a goof at the beach. People relax intensely and just stop worrying about being whoever they are for a bit. Otherwise private people lie in low-slung beach chairs in the sun, snoring, mouths open. Grandmothers sit in the sand letting the waves wash up over them, with little-kid expressions. Executives pull their toddlers on body boards in the shallow waves, whooping louder than the kids. Everyone, even the most graceful person, eventually gets caught in a wave, tossed around and turned upside down.

The best part is that through all of this lively abandon, no one notices the goofy, giggly kid flapping about in the surf. It’s the one place Georgia is just as uncoordinated – and happily falling down – as everyone else. She capsizes regularly in two inches of surf, but no one cares. Then she trudges back up the beach, puts on her iPod and dances in the sand. No one notices that there’s anything to stare at, other than to smile at her because she’s having so much fun, just like every other kid.

It’s not often that Georgia is ‘like every other kid’ and it’s fascinating for me to see. I notice her differences all the time – and as she gets older, they become more and more apparent when she is contrasted with the rest of the world – and yet on the beach she becomes just another goofy person having fun.

on vacation: nancy and georgia stare at the ocean.

The people in the place where we stay are great. Many Southerners are there, having driven two or three hours from their house to get to their summer holiday place. The people are warm, friendly and chill. From their typical greeting –“heyyyy”– to their common reassurance –“Oh, you’rrre awright”– it is something I like to hear. Georgia quickly picks these greetings up. When she’s in the pool, if you dare to walk by, you are greeted with a series of  “HEY!” then “How are you?” over and over. After the fourth time, when I’m telling her that’s enough, the other person will inevitably say,“Oh, she’s awright….”.  And so it seems, she is.

What’s not to like? Really.

Our front yard is the ocean and our back yard is a pool. It’s hot and sunny. We have patrols of pelicans flying over our place and dolphins who swim by in the afternoon. Lots of people may well notice that Georgia is different, but it doesn’t matter as much as it does in the rest of the world. She’s a kid on vacation, just like everybody else.

On vacation: georgia stands by the ocean with a huge smile on her face.