Almost-Resolutions and Luge Rides

Georgia and Nancy

I’ve always been one of those people who resists making New Year’s resolutions. But towards the end of December, I inevitably start to think about what I’ll do better or more of or less of in the coming year. I tend not to call these resolutions or write them down, so I consider them almost-resolutions. Not writing them down makes it easier to, you know, change them on the fly … “Oh, I was avoiding carbs? Well, I meant only weekdays. The weekend is totally fine to have chips and dip for dinner!” or “I was going to run 10 kilometres a day? Oh no, no, not on cold days! Of course not!” You know what I mean. You’ve been there.

Since I had Georgia, I tend to feel more reflective at the end of each year, thinking about both her progression in the world and the evolution of our relationship. As mothers and adolescent daughters go, we have a good connection. Sure, there’s drama and rebellion on her part and some nagging and frustration on mine. But most days with Georgia are pretty easy and we like to spend time together. What would I like to change and make better?

First, I’d like to spend more focused time with Georgia. Of course, that means doing so on her terms – which is not unlike most kids and parents. But we spend a lot of time parallel to each other, rather than engaged with each other. Which is actually pretty okay. She’s happy to play in her space, the basement, while I work upstairs. She comes up and asks about what I’m doing, or watches for a while. I go downstairs to share a snack with her.

But typically we exist quite peacefully and beside each other. She actually likes me to literally be beside her (the invitation is always “come sit beside me, Mommy”) for certain television shows — after which I am instructed to leave immediately. We do lots of things together, we eat meals together, we go out places and on vacations and have plenty of time together doing the things that she needs help with, like dressing and bathing and braiding hair. But much of our time is spent in parallel.

There’s a lot of discussion of the notion of parallel play in kids with autism: where kids are happiest simply playing alongside other kids. Georgia did that often. She’d be thrilled to be with other children, but never engaged them in chatter or play. She’d watch them intently, laugh when they laughed (even if she didn’t understand the joke), repeat things they were saying and comment to herself about what she was seeing. She also developed a habit of giving other kids adult-style instructions and clear safety advice when they were playing: “Hey kids, be careful on that swing!” Kids who knew her never seemed bothered by it, but she still occasionally gets looks when she yells at 10-year-olds on the playground: “Hey boys, please be careful! No running!!!”

The fact that she is still a ‘parallel player’ is not surprising. I think that this year though I’m going to push myself on her a bit more, even just to be beside her for more hours of the day. Sit beside her while she watches one of her thousands of self-made short videos on her iPad. Watch a movie beside her on the couch every weekend. As long as I come bearing popcorn with butter and salt, she’ll let me stay.

The other thing I’ve been thinking about is the past year: it felt very reflective. Moving Georgia from grade eight into high school was a monumental transition for me. (For her, apparently, it was pretty damn easy.) It made me even more reflective about who Georgia is and what she’ll become. The trajectory of high school is meant to build a solid foundation for what’s to come, and the transformation from ‘kid’ to ‘young adult’ is a formative one. Facing that with Georgia, I’ve found it admittedly bittersweet and it’s made me engage in some serious soul searching. In 2013, that is.

It may sound like an odd almost-resolution but I’d like to do far less soul-searching in 2014. I don’t mean that I want to be more superficial. It means that I’d like to just worry a little less about the big things. I’m aware that the way I’m wired means I worry about the big things all the time; the danger is not only missing the really good, small things but the ease with which I can slip into “The Abyss” — the place my most serious worrying takes place.

It’s the place where I worry about what will happen to Georgia when I’m no longer around. Where I worry about how she’ll find happiness as she gets older or how she’ll be treated in what’s a pretty cruel world. It’s easy to go down intoThe Abyss (trust me, middle age hormones and Apple holiday commercials make the plunge far too easy). It can be as easy as hurdling down an icy luge. It’s cold and fast and dangerous and you reach the bottom so quickly, you hardly see it coming. It leaves you breathless.

scroogeblurayGhost

Worrying about the big things often means taking that icy luge trip into a dark and cold place, a place where I ruminate on things yet to come. It’s easy to get out of and I only linger there occasionally, but still. Like Ebenezer Scrooge, I see that those things I fear may be yet to come can actually be altered by me.

In 2014, I’d like to not visit The Abyss so much. I suspect all parents have their own Abyss – the place where their deepest worries about their children take them. And I suspect that their experience is similar to mine. Worrying can take you there on a particularly grim day or when an important life transition is happening or other wonderful days when middle-aged hormones make you sob at dog food commercials with soft piano music.

It’s the reality of raising children: You worry. But as my mother says, so much of what we worry about never happens. And much of what I worry about are things that I can avoid happening. I’m not sure exactly how, at the moment, but I’m up to the challenge. The first tiny step is to probably live a little more in the present. Georgia, a true master of living-in-the-moment, is surely the one to help me with this.

So what almost-resolutions am I making this year? Well, I think I am happy to simply anticipate a year to come of spending less time on the icy luge ride and more time in the moment beside that fabulous kid, eating popcorn with plenty of salt and butter.

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“Ears. Pierced.” Georgia Makes a Plan

pierced ears

A few years ago, Georgia admired someone’s earrings and so we explained to her what was involved. She listened(ish) to us, looked back at the shiny earrings and said plainly, “Georgia. Ears. Pierced.”

At that moment the campaign began.

Over the past few weeks she was asking more adamantly. Or rather just stating, “My ears are getting pierced” as a clear and inevitable fact.

I admit that I was far more worried than she was. I imagined all sorts of badness. I had a horrible picture in my mind of six people holding her down while passersby in the mall worried about child endangerment. I was concerned she didn’t fully understand the experience and might not be able to handle it.

Little did I know.

Every good campaign involves education. So we did what we do when something really different is going to happen in our lives: We talked about ear piercing. A lot. More than you could imagine. Repetitively, frequently, simply. We watched YouTube videos of girls — from the calm to the hysterical — getting their ears pierced. It’s amazing how many videos have been uploaded. It’s wild what’s out there taking up space on the internet but in the end it’s quite good for us.

We talked about the fact that she’d have to wear the earrings to bed. (Keep in mind this is a girl whose bedtime routine has not changed in 12 years.) We stressed that she couldn’t play with them or touch them much. We introduced hand sanitizer as a regular part of Georgia’s day. Or, as we call it in our house (where the Christmas season begins immediately after Labour Day, apparently): Hand Santa-tizer.

I also injected a regular barrage of, “Do you really want your ears pierced? Nah, you don’t — do you?” into everyday conversation. Each time she answered with a tired, and slightly distracted but still firm, “YES, Mommy. Georgia. Ears. Pierced.”

At some point a few weeks ago Georgia decided that she wanted her ears pierced on Friday, a PD day. Too soon! I wasn’t ready! She wanted to have lunch at a restaurant first and then she wanted to “go to the mall” to get her ears pierced. Being a born multi-tasker, I added in a flu shot, just to get the pain all over with on one day. Voilà, we had a plan!

Cue maternal anxiety cranked to ‘High.’

I mentioned our plan casually to a few people. I got plenty of friendly, wonderful advice about how I should get her ears pierced, and when and where to do it — all of which countered Georgia’s plan: Avoid the mall. Go to a professional piercer. Don’t get silver posts. Make sure the posts aren’t exposed before they’re put in. Go for titanium or 14K gold. Avoid the mall. Please, avoid the mall.

All good and helpful advice. I read it, listened to it. Started thinking. Tried not to think about it. Panic set in. Was I putting my own kid at risk by letting her actualize her plan? Argh.

I did some late Thursday night online research and discovered two things. First, there are no posts anywhere that mention places it might be better to take a kid with autism to get her ears pierced. This was surprising to me. The internet provides such a rich abundance of all things PLUS autism — but not this. Second, I realized that for every argument against Georgia’s choice of method, there was a counter-argument and a whole lot of supportive but often anecdotal evidence. I read until my head hurt.

There was something bugging me all throughout this. It took me a while to figure out what it was. But when I did figure it out, it really helped make up my mind. It was the nagging fact that I really, really needed to do this Georgia’s way.

Hey, this kid sometimes likes things that are not what I would choose. She wants to hang out in Dundas Square and watch the ‘world’ go by. She loves lunch at Quiznos. She likes food courts! She would eat salami every meal if she could. She wants to get her ears pierced at a mall. And she wants “little white ball” earrings. It’s important to note that there are few things Georgia actually and actively WANTS in the world and fewer still that she goes out of her way to articulate to me. Never mind articulate those things — complete with a plan AND lunch at a restaurant first. She just doesn’t do this every day. I needed to take note of this and to make it happen.

With some kids, I can imagine talking to them about the range of choices and what they would prefer. How they’d like to experience ‘getting ears pierced’ and even discuss risk and benefit in terms of method and location. Not with Georgia. I wanted to do it her way. In fact, I needed to. I became convinced that this was important and a positive step. Of course, I had to do some serious work to tell that to my 3 a.m. self, awake and blinking in the darkness, madly worrying.

edward scissorhands

I lay in bed and pictured the worst. Horribly distracted minimum-wage gum-chewing adolescents with bad attitudes holding unhygienic half-working old-fashioned ear piercing guns in their soiled hands. Rolling their eyes at my kid.

I imagined the ear getting pierced halfway and then the rusty gun seizing, and the subsequent bloody wrestling match between the piercer and what remained of an earlobe on screaming, traumatized Georgia. I pictured her writhing and squirming and turning her head violently at the key moment, so that we ended up with a half-pierced cheek, and chaos. I could almost hear the ear-piercing scream following the ‘click’ of the gun, and see the entire sordid population of the mall turn their attention toward the Bad Mother. I drifted in and out of sleep to horrific visions of infected and swollen and pus-covered ears dancing in my head. Was I doing the right thing?

And then it was Friday. Georgia woke up, opened her eyes and stretched languidly. Stopped. Rolled over in bed with purpose. Looked me straight in the eye and said without hesitation, “Today’s the day. I’m getting my ears pierced. With little white earrings.” Dammit. She remembered.

We worked the whole day toward this Georgia-initiated event. She ate sushi for lunch (while the lovely waitress told us about her earrings and I wished I had ordered a gin martini) and then went to get our flu shots. (“That wasn’t so bad. No problem, Mommy!”) And then there was nothing left to do but pierce my child’s ears.

The mall loomed. I dawdled, asking her again, “Are you sure? We can do this another day.” But no, this girl was determined. She strode confidently into the store and watched, mesmerized, as a hipster dude got a giant cubic zirconia in one ear. When he flinched a bit, I was sure she’d be gone. Nope. She just watched, eyes wide, quietly taking it all in. I realized I was wringing my hands and mumbling under my breath.

We chose the most expensive, most infection-resistant earrings they had. Chose the longest post to avoid problems later on. I agonized, changed my mind, then returned to the original choice. Asked for the managers. I analyzed the efficiency of holding her head versus her hands, while the manager patiently listened and advised. Our loyal babysitter Krista, Georgia’s true friend and an honorary member of our family, tested my smartphone video camera, chattering away. She was as nervous as I was. The two managers agreed to pierce both ears at once. Georgia, her eyes like saucers, just watched, silently and calmly. I was what I imagine a mother cricket or other frenetic bug mother might be like. I could feel the sweat dripping and my palms were clammy. I put my hair up in a ponytail to get it out of the way of this operation. I was THAT mother. When they told Georgia to breathe calmly in and out again, I realized that I was panting loudly with anxiety.

– click –

And then it was done.

My kid – that fabulous uber-calm kid – sat as if nothing had happened. No flinch, no sob, no wiggle. The nurse in me decided that she was in a state of extreme shock and would start screaming at any moment. Nope. Nothing. She smiled and calmly admired herself in the mirror they held up, turning her head this way and that. I was incredulous.

ears

“Oh wow, I’m so proud of you! Wow! You!! Why, I… Wow! I mean, you didn’t even move! Georgia!! Wow! You are SOOO good! Are you okay!? I mean, wow! Wow! Did it hurt?”

She thought before she answered. I wish I had some insight into what went through her head during those seconds. When she finally responded, “yes” I wondered if that was her answer because she thought, in some way, that I needed to hear that.

Georgia did something amazing that day that I never imagined she would ever do. While many people said, “Oh, getting her ears pierced is such a rite of passage,” I suspect they had no idea just how much it would signify.

She thought about something she wanted and articulated it to me. Something age-appropriate, and something that lots of other kids her age want too. She asked for it. She made a real plan. And then she made it happen.

She took the purse with the horse pictures on it and a loonie in the side pocket. She knew how to act, she knew what was involved and was far more prepared than I was. She grew up that day in a way that’s hard for me to describe.

And me, I had yet another insight into this neat little separate-from-me Georgia-person, and the fact she has the potential to make things happen in her own life. For herself. Earrings are clearly just the start.

She had one request as we left the store: She wants to wear – once the studs come out – the tackiest, dangly half-avocado earrings, one earring with the pit and the other without. This kid knows what she wants. I’m just hoping the Santa-tizer takes note of that request for her stocking this year.

The Communication Book

communication book

Those of you with teenagers will be familiar with the frequency of one-word answers to complex questions. When you dare ask, “How was school today?” the answer is typically a monosyllabic, “Good.”

If you ask a follow-up question seeking more information such as, “What did you do today at school?” you’ll likely hear: “Work” or (the best one) “Nuthin.”

Georgia is no different from any other teenager in her uncanny expertise dispensing one-word answers in any situation — and “Good” is her go-to answer for any question along the lines of: “So, how was X?”

Taken together with her legacy of being, let’s just say a poor historian, we realize that we truly have no idea how she spends her days. If you ask what she had for lunch, she’ll answer with whatever food comes into her head — just to get the questioning over with. Her day are a mystery to us. We load her onto an overwarm bus with two other kids and unload her 8 hours later: somewhat less clean, often disheveled, missing scarves and with things undone but barely a hint of what causes the chaos. This may be the case for many teenagers, but we have one advantage those parents don’t: The Communication Book

If you are a parent who knows what a Communication Book is, you’re probably chuckling to yourself. You know that the Communication Book can serve a number of functions. It is simultaneously an encyclopedia of your child, a tattle-tale, a nagging reminder of what you’ve forgotten to do, a mystery, a secret weapon and maybe a brief glimpse into the world of your child. The world of your child in this whole other life she has where you are not.

communication book

Ever since Georgia entered the public school system her teachers have used a Communication Book. It’s a communication device between the teacher and the parent. with the teacher reporting on the child’s day and the parent commenting or sending information back to the teacher for the day ahead.

The hilarious thing about the Communication Book is that the quality of the information is highly variable.We’ve had teachers who write tiny diatribes each day, and some that merely circle the pre-printed ‘Good Day’ and write nothing more. In the case of less communicative teachers, it only becomes worrisome when they circle the pre-printed ‘Bad Day’ no further information.

This year Georgia has a great teacher who writes informative, encouraging and positive notes each day, signed ‘Dave.’ He follows up on the things I write back, and it really is ‘communication.’ This hasn’t always been the case in other classrooms so I do appreciate the amount of work it is for under-resourced teachers to engage with kids all day, and then write about it. Because it’s all text-based communication, it lacks the same kind of tone that you would have if you were face-to-face with the teacher every day. The worst and the best observations are written with the same style and typically followed by an exclamation mark (and a smiley face), no matter how good or bad they are.

I love Dave’s notes. Chris and I laughed over the first few notes of the year as Dave was getting to know Georgia. “My, my, Georgia is a social girl!” and “We didn’t get much work done this afternoon as Georgia was being quite social!” and “Georgia is such a social girl – we like it! She seems to know everyone!” Oh, we know, Dave! Our highly distractible and very socially-directed child would much rather wander the halls of her new high school greeting everyone by name and flashing a toothy smile at them than do work. So we answered back with an equally diplomatic, “Feel free to set some limits on that, Dave!” Add smiley.

Georgia’s Communication Book has provided other funny moments. Often notes from teachers refer to achievements, or might simply tell us what the class did that day. And sometimes they’ll tell us what Georgia was like: “Georgia seems tired today.” Other times it is a clear tattletale device. Less-than-ideal behaviour is stated simply without any context or judgment, but almost always with an emoticon — which makes for a funny read.

“Georgia was spitting on the subway” :)

“Georgia was swearing at recess today: She said shit, penis and one Portuguese swear word.” :(

“Georgia finds it funny to pretend to spit” :)

“Some spitting today” :(

“No more swearing but Georgia is imitating others!” :(

“More imitation” :)

“Georgia finds it funny to say swear words and imitate others.” :)

There are also the ‘Instructions-for-Parents’ one usually finds in the book, typically read around 9:00 p.m. before entering panic mode:

“Please draw a picture of a person with major body parts for Georgia tomorrow. Thanks!” :)

[Google the difference between ‘major’ and ‘minor’ body parts, draw ten stick people, give up]

“Thanks for the brownies tomorrow for the party!” :)

[Thanks for the 24-hour Metro around the corner! :)]

“Georgia has to wear black pants and a light green t-shirt for the concert tomorrow”.

[Everyone’s drawers are full of light green t-shirts, so no problem, sure.]

And the best one:

“PD day tomorrow!” :)

<gack> What?

Finally, there are the lovely surprises you occasionally get — the messages that make it all worthwhile:

“Georgia ran a race in the track meet. She got a medal.” :)

“Georgia has great rhythm. She did so well in dance class today!” :)

“Georgia loves music. She chose Bob Marley to play for the class in ‘choice’ time today!” :)

“Here is Georgia’s ribbon from the swim meet. She had a great time!” :)

“Georgia had such a great afternoon. The other girls did her hair!” :)

“Georgia had fun at the dance. She danced with many of the boys.” :)

“Georgia really helped out. She made spaghetti for lunch.” :)

These kinds of messages are the ones where we realize this kid really is a bit of a wonderful mystery.

She ran in a track meet? The kid who wouldn’t walk? She cooked spaghetti? She got her hair ‘done’ and danced with MANY of the boys? Who is this kid? (and what do you mean by MANY boys?!)

What other talents does she have up her sleeve that she’s exploring, out there in the world? It occurs to me that, miraculously, she leaves the house every day and goes off into the city as her own little person, with her unique flaws, strengths, habits and a true existence quite separate from me. And to some degree, obscured from my view.

She can decide what she likes and doesn’t like, make choices and move through the world on various outings. And making purposeful progress in her own growing-up that I hear about second-hand.

Georgia on her way back from school. What surprises will the communication book hold?

On one hand, I’m sorry to miss seeing her running the races or swimming for ribbons. I would love to be a fly on the wall while she makes spaghetti or dances with MANY boys.

On the other hand, I find the fact that she has an independent existence appealing. It pleases me immensely that she moves through the world in this way, as it was never a given that she would. The mystery that is Georgia-becoming-Georgia is wonderful just to hear about.

So, Dave: please keep me posted. :)

Shirt Sleeves and Confounding Things

shirt sleeves: have you ever thought about how hard it is to do this, have your shirt sleeves tucked nicely inside your jacket?

Ever thought about how much work it is to keep your shirt sleeves pulled down while putting on your coat?

Think about those mornings when you’re rushing out the door, throwing on your coat and sprinting to catch the streetcar. You get on and find yourself crowded sardine-like, standing face-to-face with fellow commuters for the 20 slow blocks to work.  All the while aware of that icky, bunchy, must-must-must-readjust feeling of your shirt sleeve pushed up well beyond your elbow in your haste to put your coat on.

I hate that feeling – perhaps a whole lot more than other people, I’m realizing – and so I always take time to grasp my shirt sleeve firmly as I plunge my arm into that coat.

Feeling a bit weird about how much I dislike this feeling, I googled “when your shirt sleeve gets bunched up when you put your jacket on” … and found a Facebook page called “I hate when you put on a jacket and your sleeves get all bunched!!” with 777 likes. So at least there are 776 other people who dislike this as much as I do. And it got me thinking. There’s a reason that there are sweaters with those thumbholes on the ends of the sleeves: to keep the sleeve. Pulled. Down. Beautifully.

Over the years of caring for Georgia, I’ve learned just how much planning, gross and fine motor skills the simplest tasks require. Trust me, these things take up more time and subconscious mental effort than you think. There are tasks that most of us carry out easily, without thought or planning: unfolding a pair of pants placed in your drawer inside out in order to pull them on, fixing your undergarments just so and — yes — that automatic motion of grasping your inner sleeve while you pull on your coat, so that the sleeve doesn’t end up around your elbows. All these things that most of us do intuitively and without active planning – most often very naturally.

shirt sleeves, long, for gripping and tucking

Today, I tried to figure out how I learned to hold my sweater sleeve while putting my coat on. I don’t remember someone showing me. It just made sense and it worked – and I adopted it as a practice and adapted it to a variety of contexts: parkas, raincoats, jackets and cardigans. Looking around, I also noticed that everyone does some version of this — and it gives me pause. Who taught us? How did we learn this seemingly minor mundane task?

Think about all those fasteners on the clothes you’re wearing today.  The buttons, the zippers, the toggles, the Velcro, the drawstrings, snaps, hook and eyes, the buckles and frog closures. It’s exhausting! I’ve never thought much about it, but try to count all of the different kinds of closures you operate efficiently on a daily basis without thinking about it.

Until you don’t operate one properly. Oh yeah. Ever arrived at work with your sweater buttoned unevenly, or entered a meeting with your dress unzipped, or sat with your higher-ups with confidence and your fly undone? Been there. I’ve even done the whole skirt-tucked-into-the-back-of your-tights-while-walking-across-the-university-campusthing, a memory that makes me shudder all over again. Total mortification.

It’s important to know how to do these things up in the morning to ready yourself for the world. It’s also important to realize that you monitor these things during the day (Nancy, skirt still outside of tights? check). Finally, it’s important to know how to get these things undone at the end of the day so you can take leave of your clothes. Skills most of us just do. We don’t think about them, spend time of them or give them a second thought. We throw our clothes into the dirty laundry bin and without further ado, move forward through our lives.

In addition to thinking about and watching how Georgia does things, I have had the distinct advantage of working with occupational therapists (amazing people — really) who helped Georgia develop skills in the activities of daily life, and who have also helped me to understand the serious challenge many of these seemingly minor mundane tasks present for individuals who have motor planning problems. These are the things you and I do all day to keep ourselves washed, dressed, fed, hydrated and, well, appropriately hygienically maintained – basically what we do to keep ourselves alive and well. Not to get too graphic here but just think a moment: How did you learn how much toilet paper to use? You probably figured it out, for better or worse, through trial and error. You use as much as you need and well, you do a quick unconscious mental calculation about how much to take each time you find yourself in that situation.

Shirt sleeves

But for Georgia, who does not have that innate ability to figure this stuff out and to be both flexible and attuned to the complexities of each individual situation while also keeping general principles in mind (e.g., don’t use too much toilet paper or you’ll clog the toilet/don’t use too little/don’t finish the roll unless you see another one to replace it) it is something we actually have to teach her.

It is the shared task of our fabulous Occupational Therapist Lisa and Chris and I to help Georgia learn 1. how much toilet paper to use and 2. how to apply that learned skill and reasoning to times when we might not be there and she has to wing it. Never mind that there are millions of different types of toilet paper dispensers out there in the world, which likely constitutes a few more weeks of lessons. We’re just focusing right now on how much to take and how to tear it off.

We’ve considered using duct tape (Lisa’s brilliant suggestion). Not on Georgia – but to make a mark low on the wall to show how far to pull the toilet paper down and tear it off at the mark. It’s actually a brilliant suggestion. I giggled at first, but after experiencing Georgia attempt to use a single sheet to do the trick and also jettison an entire roll merrily onto the bathroom floor, I was willing to try. We’ll keep you posted (or not).

If I didn’t have Georgia, I would never look at an activity like that with such intensity. I’d just do it and NOT talk about it. But having Georgia around and wanting her to learn and be more independent means that I find myself inevitably taking apart the most straightforward activities as if they were complex military maneuvers. Breaking then down into steps, articulating the challenges and then putting mitigating strategies in place. Figuring out what needs to be learned, creating strategies to teach, and setting clear and progressive expectations.

Then trying it out. Failing. Drawing up a new plan. Marching forward. You know.

One thing that’s hard to teach her is why these skills are important. I’m really not clear on how much Georgia values her independence in the context of ‘doing stuff for herself’. She is wildly and fiercely independent in terms of wanting ‘to be alone’ to listen to her music or to play on her computer, but if you are offering to make her a sandwich, she’ll totally have one, thanks. It’s really tough to push her to help make a sandwich some days when she does know that if she doesn’t make her own sandwich, she’ll eventually get fed something. I’m so used to doing ‘for her’ that I’ve sometimes neglected to teach her how to do ‘for herself’. I’m also painfully efficient and (okay, okay) impatient occasionally with inefficiency, so it can be challenging for me to be comfortable with Georgia taking a good half hour to get dressed when I could just help her do it in 5 minutes and get it done. That’s something I have to work on – to resist the urge to help and to help to be more efficient. I have to learn to give her time to do it without my help. Trust me, it can be excruciating, watching someone try so earnestly to do up the button on a pair of jeans: concentrating, working, trying. The urge to help is overwhelming at times, and becomes that much more difficult to resist when, inevitably, she pulls her finger out of the buttonhole, sighs, declares “It’s soooo tricky. I need help.” and flops down on the bed. It is then that I hear Lisa’s voice in my head: “You know, she really can do it. She’s actually getting good at it. You just have to give her time. And NOT help her.”

Teaching her how to do up that button on her jeans after years of doing it for her requires also teaching her that it is both valued and important for her to do this herself. This means teaching her, somehow, about that nebulous abstract inherent value that exists in dressing yourself, in making your own food and, as we all know, tearing off your own damn toilet paper – as much as you need and want! I have tried the old “Other 14-year-olds dress themselves, Georgia – and so you should too…!” without much success. Keep in mind this is someone who isn’t overly motivated by the prospect of conforming to social norms. (Remember: barking in public is just fine.)

I often think of my mom who, when I was 14 and wanting to do what other kids did and wear what other kids wore, often told me, “Well if all the other kids jumped off a bridge, would you do that too?” I’d roll my eyes with the well-practiced skill of a tween, sigh a giant sigh and mumble just out of earshot, “Yeah, maybe …”

Now I’m the mother of a 14-year-old, pleading with her to “Please, do what the other kids do! Want what the other kids want!”

shirt sleeves

I know I’ll be helping Georgia for a long time. I’m her dresser, her bather, her hairdresser, and her personal assistant. I’m the Velcro fastener, the zipper-upper, the driver. I am the aesthetician and masseuse, the maid and the cook. I am the closer of all things. I buy her socks, help her put them on and take them off, wash them, fold them and put them on again. There’s a comforting cycle to all of this.

But like all cycles in nature, there has to be balance. The balance in this is finding where her role waxes and mine wanes. My challenge: to step back and force her take on the tricky. To take pride in seeing her going out the door more than just slightly unkempt but independent, to be satisfied with an autonomously undone zipper or a cardigan freely but unevenly buttoned up.

To be comfortable with the untrammelled skirt caught up in the tights. But ask me to be okay with the self-reliant, self-created, bunched-up sleeve in the jacket? Ohhhh never. ;)

Have You Taken the Quiz? How Autistic Are You?

So I’ve said to my editor previously, “I would rather not do the whole political commentary thing on issues related to autism.” But then along came that letter. And now a new Facebook app — one that I cannot help but write about.

A few years ago a new ‘quiz’ appeared: people took the Autism Spectrum Disorder (ASD) Quotient Test and then posted their ‘score’ to Facebook. When I first saw these posts I was astonished, angry and hurt. My knee-jerk response was a highly emotional reaction to the discussions taking place on people’s walls – “Hey I only scored 15 on the autism scale? But I’m such a weirdo!” “Hey, how about you?”  I sat down and tried to think about why it bothered me so much.

I wrote a rather long diatribe on Facebook about why this quiz bothered me (and much of that original note appears here). A lot of my Facebook friends read it, commented on it and shared it.

I’d kind of forgotten all about it until yesterday, when I saw someone on had taken the fabulous (note sarcasm) new‘Quiz Bone’ quiz “How Mentally Retarded Are You?” — and the other version: “How Retarded/Mentally Disturbed Are You?”

Wow. What an amazing way to spend your spare time — answering a 17-item quiz that’s utterly ridiculous (but it’s a joke! of course!) to share with your friends just how ‘mental’ and ‘retarded’ and ‘disturbed’ you are.

Hey, I’m a fun person. I can be irreverent and even a bit cheeky sometimes. Sure. I’m not a spoilsport and enjoy a good (occasionally even a bad) joke. But aren’t there enough fun and goofy things to laugh at in the world without having to create quizzes like this to amuse your friends and get them to give you the thumbs-up on Facebook? Have we not moved just a tiny half-inch beyond this by now?

There’s an important distinction to emphasize here. The autism quotient test which was posted on Facebook a few years ago is an actual test that you could take online and is reputable, created by autism researchers Simon Baron-Cohen (not this guy) and the Cambridge Autism Research Centre.

But if you take it online, keep in mind that it’s not in the context of clinical support or advice — nor with other kinds of tests alongside it to support investigation. This is not how actual clinical diagnoses are made, period.Furthermore, taking it on your social network and then being asked if you want to “share” your results with your peeps puts a far different spin on it. And one I’m uncomfortable with.

But somehow the ‘How Mentally Retarded Are You?’ quiz is considered just pure unadulterated, old-fashioned ‘fun.’ And with questions such as “Do you know what yarly means?” and “Do you have to do something, leik an ocd thing?” it’s utterly ridiculous.

Facebook apps and online quizzes are, as Chris reminded me when I was first upset about the autism quiz, designed to trivialize everything. In 4 minutes you can find out “what kind of continental philosopher” you are or what “the truth behind your eyes” is. But an app to figure out whether or not you might be on the autism spectrum or whether or not you’re really ‘mentally retarded‘ takes this trivialization too far.

Maybe the Facebook app was aiming to increase autism awareness. Well great, on one hand but on the other hand, let’s be honest: it’s unlikely going to be taken by anyone who truly ‘suspects’ they might have autism. It’s being taken because hey, it’s maybe a bit interesting and fun to find out if your quirky, eccentric reactions to things place you – even by a nudge – onto the spectrum. The mental retardation quiz is almost certainly not being taken by anyone who feels they may have a developmental delay or are behind in their developmental milestones.

Bear with me while I talk about autism awareness for a moment.

Autism awareness, I’m beginning to feel, is a double-edged sword. While it’s great that more people are becoming aware of what it means to have autism or be ‘on the spectrum,’ the awareness movement is much better at promoting images that are palatable and interesting, and avoiding those that aren’t so much. There is not enough acknowledgement that autism occurs on a spectrum and people on that spectrum vary significantly in terms of presentation, functional and cognitive abilities, and appearance, etc.

There’s a lot more awareness of high-functioning, ‘quirky’ types than there is awareness of kids like Georgia – who have marked developmental delays, and are functional in some spheres while not in others. Or even kids far less functional or social than she is. It’s not the picture people are made aware of when it comes to autism, and I know that. When I go to the grocery store, I know that. When I take her out to a public place, I know that. People simply aren’t aware of the kind of autism Georgia has, or the kind of autism many people have, where they are non-verbal or move through the world in spaces outside the norm.

In essence, autism awareness right now is pushing a kind of meta-narrative about autism. As a university professor, I spend a great deal of my time pointing out to future health care professionals the dangers of viewing meta-narratives as pure fact. The truth is, there isn’t just one reality of autism just as there isn’t just one meta-narrative about what it means to have cancer, or to have diabetes, or to be blind, or to live in poverty, or to be a paraplegic, or to be in love or to be an adolescent.

Temple Grandin, ‘Rainman,’ the quirky, eccentric smart guy who lives on your street whom you suspect is ‘a bit’ autistic – these are only a few select images in a vast array of narratives about what it means to be autistic. There are so many different ways in which autism presents that to claim there is one ‘gosh, so fun and quirky’ way to think about it is very convenient and very wrong.

* * *

Let me assure you: Georgia is fabulously fun and quirky. Her eccentricity and way of being in the world is something from which I take endless joy and inspiration. Her unique experience of almost everything means that I have a truly once-in-a-lifetime opportunity to see the world in totally different ways than many people ever do.

But would I rather she know how to tie a shoe at age 14? Would I rather she not be glared at in grocery stores? Would I rather she not be stared at with puzzled expressions at the movie theatre? Would I rather she had a clear opportunity maybe to go to university or have a more independent life? Would I rather not worry on a daily basis about who will look after her once I’m gone? Would I prefer to not have to jump in and say, “Oh, she’s autistic” to explain something people can’t understand, to reassure them and make them feel ‘okay’ when Georgia is barking because she’s happy? Yep, I would.

So the whole ‘fabulously quirky’ thing is great. The rest is, as they say, the price of admission. It’s a frighteningly high price on some days though, for many people with autism or family members who have autism.

DSC_0144

The ASD Quotient Test – the one that Facebook promoted a few years ago – is a 50-question Likert type scale that aims to identify those who may meet the diagnostic criteria for autism spectrum disorder. It isn’t a means for making a diagnosis but it is a way to see if, hey, you might just ‘be diagnosable.’

Let me tell you what a real autism diagnosis is like.

It’s a little more complicated than answering 50 questions one bored Saturday afternoon at your laptop while playing Farmville in another window. For Georgia and me, it involved putting a mostly non-purposefully communicative four-year-old through 2-3 days of testing, which was prohibitively exhausting and incredibly frustrating. Then an MRI. Then a couple of weeks of waiting. Then a meeting with two psychologists, a developmental neurologist, and a bunch of fascinated residents and interns.

And me on the other side of the desk, alone. And Georgia (who was still unable to walk independently) at my feet, more the eternal toddler than a four-year-old, completely unaware of what was going on around her in the room.  There was a discussion of how fascinating her MRI was and how interesting that she was functional at all without very much of the white matter we all have. The white matter that helps us put things together on many levels. A diagnosis. A grim prognosis. And a frighteningly insensitive and anachronistic reference to institutionalization from one of the residents.

I almost never have days or even hours when I feel the way I did at the time of diagnosis, not anymore  – but I do have days when I’d rather not have gone through any of that. But that diagnosis changed her life and mine in the most profound way possible.

50 questions (or 17) just won’t do that, and let’s not pretend it does.

What is the real value of taking the Autism Quotient Test on a social networking site? When you get your score, are you supposed to say to yourself under your breath: “phew!” or maybe: “cooool!”? While I will promote the idea that my own favourite kid is the epitome of cool (and those of you who really know me, you know I do believe that), I wholeheartedly refuse to buy into the rhetoric that autism is totally and completely cool. I simply won’t.

Have you taken the autism quiz?

Don’t get me wrong. As I’ve said many times, I have the coolest teenager I know. Georgia is cool. Her autism? Frankly, it’s just not as cool as she is.

I take a tremendous amount of joy — and just simple fun — from being with Georgia, and having her as the biggest part of my life. She’s warm, funny, mellow, kooky, hilarious, musical, brave, endearing, genuine, real, touching, interested, smart and compelling. Would I rather her be all of those things and not autistic? Not an easy question to answer. I would however like to just tweak the rest of the world a bit, I guess. Starting with a few FB apps.

Forgive My Ranting, But Please Stop Staring!

forgive my ranting but would you please stop staring? Image of Jack Nicholson from The Shining

I wrote and rewrote this column, and then read and reread it – and guess what? I think I may actually be having a small rant! So, consider that a bit of a disclaimer and a warning.

Let me first tell you about two recent outings with Georgia.

1. A few nights ago we went to the grocery store much later than we normally would. We stopped in on our way home from an evening event – something we don’t generally do – but hey, we needed cereal and milk. Stuff happens. Of course, when you’re dragging Georgia along with you, she is far less nonchalant. Her reactions appear, from the outside, to be worry or anxiety. Really, it’s just a way for her to figure out what’s going on. We’re doing something different from our usual routine, and she simply wants to know if the rest of the night is going to be equally as askew.

Her way of doing this? Repeating questions and statements loudly. Loud Repetitive Talking.

Picture us in the dairy section. She’s in her Marley T-shirt and jeans, pushing the cart with me. I’m still in work clothes and looking the typical Thursday night working mom: dark circles under eyes, slightly frazzled, cartoonish hair.

She’s repeating over and over and over loudly: “Nearly done, right? We’re nearrrrrly done! Nearrrrly done. Yep, we’re nearrrrrly done!”

Now picture the shoppers around us. One woman abandons her shopping cart to walk down the dairy aisle to get a better look at Georgia. Others pass by (looking for longer than is … let’s just say, polite) with furled brows and grouchy expressions. People peer across soup can displays and glare at us over piles of vegetables to check out who was daring enough interrupt the otherwise obviously much-sought-after pleasant muzak’ed ambience of the urban windowless sterile grocery store with Loud Repetitive Talking. It’s the stuff of horror movies.

Forget chainsaw-wielding dolls! Let’s make horror movies super scary and add Loud Repetitive Talking!

*cue ear-piercing scream*

STOP STARING

2. Last week Georgia and I decided to spend a rainy Saturday at the movies. The theatre is on the fourth floor so we used the elevator. When the movie ended, Georgia really (really really) wanted to know what was happening next, as is her way. Were we going to the car? What would come after that? There was also some disappointment that the movie was over and the popcorn was all eaten, so we talked about that. You know, Loud Repetitive Talking.

This is normal for us. I’m used to this kind of reaction from her; I expect it and have developed ways to (try to) deal with it and not lose my patience. I engage her in other kinds of conversation and less repetition. But guess what? Sometimes this seemingly ceaseless stream of Loud Repetitive Talking happens.

And it happens in public. Shocking, I know. If you ever hang out with Georgia it is very likely you’ll experience this. And you know what? It’s okay. It’s simply okay. It isn’t scary nor is it cause for alarm.

On this particular rainy Saturday it wasn’t so okay. We were in a very crowded elevator with about ten other people. Silent people. Rainy-day, not-happy-looking people. All standing stiffly and trying not to touch each other and occasionally shuffling in their two square inches of space, the way people do on elevators, in complete denial that their elbow is resting in someone else’s midriff. Cue Georgia, more than a few shades too loud, repeating tenaciously and just slightly melodically, “The movie’s allll done. It’s all done now. All done. The movie’s all done, right Mommy? It’s all done, right!? The movie’s alllll done. Done, right?”

It’s absolutely amazing how fast twenty eyes can simultaneously lock on a kid repeating herself. In a split second, we were locked in the collective unfriendly glare of the crowd. I was surprised I didn’t hear a ‘click’ as their eyes shifted into place.

The elevator was slow. Slow as in I-feel-as-if-I-lived-a-lifetime-and-then-some slow. I met most of the glares and tried to match them, but you know what? I was tired. I was simply too tired to either open my mouth and try to educate the crowd [“She’s fine – just a bit anxious right now. She has autism and this is her way of working things out. It looks like anxiety to you, but she’s actually just fine”] or reassure them [“She’s fine, not in any trouble, just wants to talk about the fact that the movie’s all done”] or berate them [“Seriously? You need to stare at her? You’re okay with demonstrating this kind of behaviour to your own kid standing there?”] or be sarcastic [“Maybe you’ll figure her out if you stare long enough. Keep me posted”].

But I didn’t say any of these things. Instead I just replied to Georgia every single time and put my arm around her.

The stares felt palpably threatening in a way that’s difficult to describe. It’s the taste of something not unlike mob mentality, when you’re not part of the mob. The fact that each of these ten people had the same reaction and were seemingly unaware their behaviour had a negative effect on us was worrying and almost frightening to me.

I imagine this is what it might be like in the future to be the only non-Borg, the only one not in the collective, on the elevator. 

Borg

The eyes on me made me feel hot. I started to sweat. I felt claustrophobic. And I went into full-on protective mom mode: arm around Georgia, I hugged her and I talked to her the way I always try to do: with patience and calm. I wasn’t in the mood to educate but I was not going to miss an opportunity to demonstrate basic human compassion, and try to show people that everyone should have the chance to just be in the world the way they are, without constantly being judged or evaluated by others. Especially those without all the information.

* * *

I went home, poured a glass of Chardonnay and sat down at my computer to do a few Google searches. I got 734,000 hits for the keywords “staring, autism.”

There were a number of hits for T-shirts that read, “Hey, keep staring — you might actually cure my autism!”but mostly they were questions in from parents — and some from people who have autism — who deal with this every day and are baffled and tired of it. There were lots of answers that cited cultural differences in eye contact and social norms. There were some answers suggesting that those who stare may simply be unsure how to ask if you need help.

Uh huh. I’m sure that sometimes it’s an issue of cultural norms, or merely a helpful stranger. But it happens too often to write it off as an altruistic phenomenon.

I don’t know what to do about this. I’ve read about mothers who carry business cards with information about autism on it to give to others. Or mothers who take the time, every single time someone stares at their child, to stop and calmly educate them on the spot about autism spectrum disorder. Good on them.

And I’ve done it occasionally.

But you know what? Some days I’m tired. I work hard, I parent hard and I’m tired. I just want to buy my butter and milk and double-stuff Oreos and cheesies (okay, and my vegetables) like everyone else and go home. I want to go to the movies with my kid and talk and eat popcorn and laugh and get on the elevator to go home, like everyone else does. Believe me, I am used to the fact that my experiences in public will differ from those with neurotypical kids. I’m okay with that.

I don’t worry about it — but the rest of the world seems to worry about it for me.

ranting

I notice those who stare far more than Georgia does — which makes me very happy for her and less happy for me. It bothers me that people can’t come to grips with something one degree off what they consider “normal.”

Normalcy, in a world of wonderful diversity is actually an outdated and unhelpful guiding construct.

Here’s what I want to say to them: At the end of the day, there is no impact upon your life, as an absolute stranger, to ride the same elevator as a kid with autism for 30 seconds. I don’t feel sorry for you if you have to experience this: If that’s your biggest problem, you’re doing pretty well.

Okay, done.

Breathing out.

Old Repetition; A New Lesson

new lesson

Not to repeat myself here, but I’m going to talk some more about repeating.

Late last night I devoured a great little book called The Reason I Jump. I turned out my light at 2:20 am and I lay awake. I was feeling pretty humbled by what this smart and reflective kid wrote at the age of 13. The author is Naoki Higashida, a non-verbal boy with autism who is now 21 years old.

He used an alphabet grid to painstakingly write what it means for him to have autism in a world in which autism makes you an outsider. His reflections are heartbreakingly honest, occasionally discouraging but always enlightening.

The book is written as a series of questions directed at him, which he answers. Some are the exact same questions I would love the answers to – e.g. Why do you repeat certain actions again and again? Why don’t you do what you’re told to do, even after being told a million times? Why do you need cues and prompts? Why do you ask the same questions over and over again? Why do you like being in water so much? 

new lesson

(The answer in a nutshell: It’s the one place a person with autism might feel free and not constantly bothered. Yeah, I can see that.)

It’s important to realize that every person with autism is, of course, different and experiences the world around, differently. But the interesting part of this book is that the questions are so spot-on the questions that have, as a parent.

And the answers actually make sense and fit with some of our own hypotheses about why Georgia does the same kinds of things. In particular, the repetition. Repetition of questions, phrases, expressions and actions. And in turn, the repetition that’s required of us.

Georgia requires verbal prompts and cues for most everything and can be easily put off-task by just about any distraction. She has difficulty with motor planning so helping her through a more complex set of actions for a single outcome, such as making a sandwich or having a bath, requires multiple repetitive verbal prompts. Every single step and each activity is broken down into small parts and steps. Leave a verbal prompt out? The step might well be skipped.

Over time, Georgia has learned some activities without verbal prompting but for the most part, much of our waking time with her is spent reminding her repeatedly, to do teeny-tiny small parts of tasks.

This can be exhausting.

For those of us who can make a sandwich without thinking too much about it, perhaps even while having a conversation and listening to music, or while stirring something on the stove, the complexity of the motor planning involved isn’t a problem.

For Georgia, it’s so tough. Think about opening a package of bread to get two pieces to make a sandwich and closing it up again. No problem, right? For her, this is an actual activity that requires a few minutes and a great deal of concentration. For Georgia to grapple with a bread clip to open a bag of sliced bread, take two pieces out and then re-close the bag requires 5 or 10 verbal prompts. And actual hands-on assistance and reminders of the end goal in order to keep her engaged and moving forward — “on-task.”

So today I sit down and feel a mix of sadness and regret after reading this fabulous little book. I also feel like giving myself a bit of a kick. I’ve been impatient with Georgia all week. There’s this incredible tension that every rational part of my brain tells me shouldn’t exist. She’s in high school now and this is an opportunity that most parents would take to raise expectations and to demand more of a child. I’ve said it to Georgia myself: “You’re in high school now, so you need to remember to do that all by yourself without me helping” or “You need to stop repeating that over and over – you’re more grown-up now.”

I’ve been impatient and demanding about getting dressed, being more independent, more grown-up. I’ve been frustrated and asked her to do more and be more. But I know it’s tough to raise the bar all at once. And according to Naoki, it’s both unfair and unrealistic. And I also realize it comes out of an entirely selfish why-does-brushing-teeth-always-take-twenty-minutes? kind of frustration.

Many parents with kids now in high school are likely thinking, “Where did the years go? She was just in kindergarten yesterday!” They are more likely to wish that their little girls wouldn’t grow up so fast. I get that. I look at Georgia and see the toddler, who disappeared too quickly.

Yet, I want her to grow up. I want her to make her own sandwich and get dressed independently. I would love her to get herself out of bed, to know the steps to take her from bed to breakfast to bus — and do all those steps without innumerable prompts and cues from me. I would love her to have a conversation that isn’t the same question over and over again while we think of different answers and responses as part of moving the question to a dialogue.

While many parents are looking at the changes in their kids with a bittersweet pride and some desire to slow things down, I seek out the change. I celebrate change and growth in Georgia and yes, I want more change.

Maybe though, it’s time for me to change a little too. (A lot.) It’s time for me to be more patient, to slow down. It’s time for me to better balance the tension I have between expecting a lot of a kid who is growing up, and who has fantastic potential in a big picture kind of way while realizing the day-to-day limitations that seem to put up barriers and obscure the big goals.

It’s time for me to change – to remember Naoki’s advice every day and be more thoughtful about repetition — why Georgia needs it. To remember that it’s much more difficult for her. To remember that those around her don’t always understand that need.

To change by stopping feeling sorry for myself during those moments of exhaustion and frustration, and remember the inevitable exhaustion and frustration involved in having autism in our not-so-autistic world. In a world that is easily irritated and impatient with repetition.

To remember that the repetition may underpin and assuage the constant anxiety of autism, of never really knowing what the next moment will hold.

Sad Girl

Everyone should buy and read this little book. Not just parents of children with autism.  Not just grandparents, aunts, uncles and cousins. Everyone and anyone.

Anyone who has seen a kid on a bus with autism, who has watched someone act differently in a public place andwondered, what’s up? Anyone who has a friend or friend-of-a-friend with a kid with autism. Read. This. Book.

David Mitchell, the author of Cloud Atlas who translated Naoki’s book from Japanese into English, is also the parent of a child with autism. His forthright and revealing foreword is incredibly meaningful to me — and familiar. I read it once and then again after I had finished the book.

Mitchell says: it was “the kick I needed to stop feeling sorry for myself, and start thinking how much tougher life was for my son and what I could do to make it less tough. Virtuous spirals are as wonderful in special-needs parenting as anywhere else: your expectations for your child are raised; your stamina to get through the rocky patches is strengthened; and your child senses this and responds.”

He’s absolutely right.

new lesson

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.