Georgia’s 13 now. That means she has the raging crazy hormones and innate quest for independence from her mother that most kids her age have, contrasted with a developmental age and capacity for rational thought somewhere, well, less than 13.

She’s also a stubborn and incredibly focused person at times. She has a talent for perseverance and a breathtaking capacity for repetition – all part of her autism. And well, she’s tenacious. Very. In fact, Georgia is really what tenacity wants to be when tenacity grows up, as they say.

This weekend Georgia had a few not great days. Well, I’ll be honest; we had a few not great days together. That mellow baby I’ve told you about has the capacity to get really quite upset, be angry, frustrated and insistent now that she’s figured out that she actually wants things. With the increase in her ability to communicate has also come an increased ability to know who to ask for things and to articulate just what she wants (and even more often, what she doesn’t want). Her increased capacity for emotion, expression and desire are all good things. They are skills and attributes I want her to have. But it also means we encounter what I will diplomatically call “roadblocks” some days.

Usually a roadblock happens when Georgia gets something very random in her head that she wants and it simply isn’t possible. Examples? When she insists she must go to the daycare she is now five years too old to attend. Or insists on having Christmas in July. Or when she wants to sleep over at her uncle’s house “today!” who happens to be on vacation for two weeks. Or when she insists we leave for summer vacation “right now” in November or that we must have sushi for every meal.

There are days that Georgia asks to go to the park. Sometimes these are warm summer days with nothing to do but hang at the park. Sometimes, however, these are busy frozen wintry days with 2 feet of snow on the ground – weather that Georgia actually really dislikes, but she doesn’t understand that it isn’t always “sunny and warm and full of kids playing” at the park. So while she really does seem to want to go to the park, I know that she’d last about a full 20 seconds perhaps before she’d be, “It’s so cold! I don’t like the park! Ugh!!” And some days, we simply can’t go to the park.  On such days, no matter how we tell her that the park is not a good option, it doesn’t make a difference and the asking turns to insistence, which quickly becomes anger and frustration.

She’s very good, and can average an “ask” about every 1.48 seconds and efficiently turn up both the volume and whininess of the request with each “ask”. We start with the friendly responses, “Oh heavens, darling, it’s too cold for swings today!” or “There’s no kids there today! That’s no fun at all!” but these quickly get replaced with the close-ended options: “It is closed. The park is closed. Closed.” or “No one is allowed to go to the park today.” (Her typical response would be to ask if the police said so, and we might just be desperate enough to claim that, yes, the police have banned park use today). By the 480th time asking, and the 480th time responding, we do that thing that parents do. We become the junior psychologists, the very above-it-all, this-won’t-work-on-me parents: “Let’s just ignore the requests and not give her attention for that.” Very successful strategy for some kids, I’m sure. Not this one. She is impossible to distract – which is amazing as she is such a highly distractible kid in other ways.

Her next strategy (and this one is truly the best) is to vehemently claim, “I. Want. The. Park. I. NEEEEEED. The. Park.” Add to each syllable an emotional Tarzan-like fist thump to the chest and you’ve got it. At the end, insert a heartfelt, “I’m soooo disappointed!” Make that a full and richly repetitive afternoon and you’re headed to the bottle of Advil by, oh, about 4:30 pm.

It’s odd. Georgia is, on one hand, so easy going and not a kid who is neither “spoiled” nor prone to tantrums. Yet there are those days when she gets often VERY random things into her head, hijacking her attention, and it will take a full waking day to discuss, argue, cajole, wrangle, empathize, and work through it, at the end of which everyone is utterly exhausted and you realize you haven’t had time to enjoy anything at all about your day.

Picture trying to discuss whether or not the ball in play was knocked out of bounds with a referee who is not only arguing the ball was in, but who has also been wearing a blindfold for the entire play. The blindfolded referee is keen to make his point, but you know he can’t really see what’s going on. He’s arguing with you because he thinks he’s supposed to, to establish himself as right rather than take off the blindfold to see what’s really happening. For me, at times like this, Georgia’s autism is, in a sense, like a blindfold she didn’t put on and one that she can’t take off.  And while I rationally understand that, in the moment, I feel as angry and frustrated as any parent with a whiny kid who won’t stop and who won’t listen. And often I am baffled. I use up all my strategies quickly. You may be familiar with some of them – reverse psychology , ignoring, being super extra stern, giving a time-out, ending the time-out, offering a super nice alternative, attempting to distract and even avoiding triggers (“Let’s just decide to never drive by a park ever again. That’ll work.”). We often resort to the old favourite: “I’m counting to three…and then…!”(Just imagine all the things that may happen after 3). This method is a timeworn desperation tool of all parents, and based on the fact that most kids have wild imaginations and can picture a potentially very scary world “after 3”. The reality is I can count to 2876, but she’ll still be insisting on whatever it is that has hijacked her attention.

Smart people who I love and respect offer me lots of advice. A very common one is “You just can’t let it get to you” along with “You can’t react to it.” Um, okay. I’m fairly smart but don’t really get the “not letting it get to me” part. It gets to me. It really does. I want my kid to be happy and I want to be a good mom. These kinds of days make me feel like I’m not achieving either goal. Not reacting to it is not an option, when a small person is following you throughout the house tapping you on the shoulder, collapsing in disappointment, whining, sniffling, sitting on your lap and insisting “But I want Christmas TODAY! I NEEEEEED my Christmas!” (Insert Tarzan chest-thumps). Other advice is to set rules, like, “We don’t yell in our house. That’s the rule.” We’re working on it, but that’s a tough one too. And, oh yeah, sometimes I end up yelling which technically is breaking the stupid rule. *sigh* Perhaps I just need to just learn how to serve sushi for every meal, pull off Christmas in July and arrange my summer vacations for November. Come to think of it…

Lots of people think it’s tough raising a kid with autism. And some days, yep, it is. But lots of other times, I seriously cannot believe how amazingly lucky I am. And here are the first five reasons I can think of, why I’m so incredibly lucky. It’s a bit of a love letter to Georgia, and seeing as it’s still February, I think that works.

1. I laugh a lot

Georgia seriously cracks me up on a regular basis. Not many kids watch Wheel of Fortune while wearing a wearing a Mexican Lucha Libre fighting mask. With her iPod on, she sings loudly, just a little off-key and usually phonetically (e.g. she does a great sing-along version of Madonna’s famous song, “Papa Don’t Pinch”).

Her way of being in the world is hilariously funny. Even the things that, as parents, we are not supposed to find funny — they’re funny when she’s involved. 

The best example is the first time I heard her swear, quite a few years ago. I was in the living room, on the floor in the middle of dinner and work and a CD player crisis, trying to fix her cheap CD player while she stood over me, watching anxiously. The player was not cooperating and I was, understandably, growling at it. Out of nowhere, I heard a calm and perfectly executed, “Stupid f**king thing.” I froze, eyed wide. I performed a quick mental check to see if I had blurted that out without realizing. I mean, I had thought it!

No. It was Georgia. Little sweet Georgia. Saying exactly what I had been thinking. And despite the fact I knew I had to tell her that wasn’t a good thing to say, I couldn’t stop laughing. That real kind of laughing, where you feel the tears coming. But I took the proper parental actions: I told her she had to go have a “time out” on the couch. She sighed loudly, and pitched herself onto the couch with a resounding, “Ohhhh, f**k”. That was it. I told her sternly I was “coming right back” and left the room to laugh uncontrollably in the hallway. Pure gold.

She hasn’t dropped the F-bomb since so maybe it was a well-timed one-off. However, it’s likely not the last time we’ll hear her swear. Her communication binder came home from school last term with a note from the teacher that we should be prepared as Georgia had been saying 3 swear words at school: “S**t” (well, kids will hear and say that), “penis” (which is actually an anatomical term so I’m not too worried) and an “unknown Portuguese swear word” I have yet to hear. On the whole, this last one rather pleases me, as it appears she is acquiring a new language.

2. She makes people smile

She says hello to most people we pass as we walk along the street. It’s usually a poorly timed (just after they’ve gone by) and overly loud “Hello!” but it makes most people smile. She remembers people by name and makes sure to say hello to them. A few weeks ago at our local Metro, she heard an overhead announcement saying, “Call for Mike, Assistant Manager. Call for Mike.” At the same time, we saw Mike striding through the store to the phone. Like an always-on-duty spy, Georgia remembered that. On our next visit to Metro, Georgia walked in with her Angry Birds hat on, and greeted what ended up being a red-faced, surprised and just slightly confused assistant manager with a “Hi Mike! How are you?!” As she left the store, she yelled out, “Bye Mike, have a good weekend!!” (It was a Tuesday, but she had good intentions).

3. Georgia will eat anything

Unlike many children, little Georgia would eat whatever I gave her. This was not a house in which grilled cheese sandwiches and KD was the only thing eaten; She has strong food likes and few dislikes. The now thirteen-year-old Georgia has a brave, inquisitive and untiring palate. She’s the kid who will try anything and pick up most things on the table, “just to try”. Her desire to try a piece of that “yellow cheese” was not at all derailed when she discovered, upon popping the whole block in her mouth, that it was, in fact, butter.

She enjoys onions (fresh, chopped into large slices to crunch on), loves olives, and makes special requests for a “mayo and mustard” sandwich. No, nothing else.  A condiment-only sandwich. She is one of the few kids I know who adores salmon sashimi and eats it the way other kids eat cheesies, in one “gulp”. If we don’t make a salad with dinner, there is always a demand for it, “with dressing and salt and feta cheese”. She loves meat, which in a house of vegetarians, means she’s out of luck most of the time (and knows when we’re giving her the “veggie meat” – she cannot be fooled). If you ask her what she wants Santa to bring her, she’ll very likely say, “HAM.”

She’ll try just about anything you offer. And if you don’t offer, she’ll very likely lean over and ask, “Can I – I – just try a little of that?” Most of the time, this allows her to expand her food repertoire just a bit.

Most recently added? Pickled jalapenos. She went to the sports pub she goes to with the boy (my boy, her father figure-person who I’ll tell you more about soon) and the boy ordered nachos. Georgia, of course, ordered a full adult portion of pasta with a Caesar salad. And she settled in to watch one of the twenty big screen TVs showing a wide range of sports (or as Georgia likes to watch, “guys falling down”).

The boy offered her some nachos and she asked to try one of the pickled jalapenos. Popped it in her mouth. This was followed by a few moments of eye blinking, grimacing and a quiet hiss of “Ohh, too spicyyyyyy” from her with a subsequent fervent gulping of her entire glass of juice and a sigh. The boy’s response – “Want another one?” Short pause. “Yes please!”. She continued to challenge herself with a tasting of pickled jalapenos and all was good. Until, of course, her eyes watered. And, she wiped them with her fingers. That sports bar hasn’t heard crying like that since the Leafs were on the big screen.

4. Georgia likes things I’m technically not supposed to like, but I “barely tolerate them” because, you know, she needs me to go with her

I HAVE to go to the Ex each year, ride the roller coaster and eat cotton candy, balls of deep-fried macaroni, giant dill pickles and corn on the cob. Why? Because she likes it and she needs me to go with her. I HAVE to go see Monsters Inc. in 3D with popcorn with extra butter and salt. Why? Because she likes it and she needs me to go with her.  I have to go to Pickle Barrel and eat one of those crazy-good Freddy’s tuna salads and a plate of deep-fried pickles. Why? Because she likes it and she needs me to go with her.

I HAVE to spend a lovely few weeks every summer at the beach just collecting shells, listening to music and splashing in the surf. Why? Because she likes it and she needs me to go with her. You see the emerging pattern here, right?

Last but definitely not least …

5. Georgia will get out of bed in the morning at whatever time we tell her to.

Yes, that is true, folks. It is her mystery talent. If we tell her to get up at 9, she’ll get up at 9. If we tell her to get up at 7:42, you’ll hear her door creak open at, yes, 7:42. I’ve wondered many things – does she wake up before the time and watch the clock, then get up on time or does she wake up just minutes before she’s supposed to be up? It doesn’t matter. It’s a magical skill and we do not question about it, merely accept it, with thanks, as yet another lovely wonderful Georgia gift.

We knew from the very beginning that Georgia had mobility problems. She was a baby who would stay in one exact spot unless you purposefully moved her. She showed no interest in scooting around or even rolling over.

Parents, you can see the advantage in this – I never had that experience of the crazy, wobbly toddler who was “getting into stuff” or waving at me from the top of a flight of stairs. She was content to play with just what was in front of her and completely disinterested in things beyond her reach.

Once we started her in physical and occupational therapy, it was evident that she’d need a lot of help not just in the development of gross and fine motor skills but also (and most importantly) in learning how to move through the world and most of all, learning the value of that skill.

Most typical kids realize that movement is the best way to get away from parents and get into trouble – good motivation – and the difficulty is totally worth it compared to the prospect of independence. My kid was the one who, if she dared to reach beyond her immediate radius, she often fell right over, like a top-heavy stone statue. She became cautious of moving and showed great trepidation if we tried to push her beyond her (literal and figurative) safety zone.

There was a time I thought she might never walk independently. I was still carrying her at age 3 and 4, getting odd looks from strangers and having constant back strain. Reaching into the back seat of a car to pull an infant from a baby seat is one thing – but when it’s a four-year-old who can’t help herself move, it’s tough. As a result of her incredibly low tone, she was a kind of “dead weight” and couldn’t engage her own muscles to hang on to me, unlike kids who engage their muscles to hold onto their parents’ sides, and to sit up straight on their parent’s hip. This made it really challenging to keep her upright and carry her through stores. Or even just to the bathroom at a restaurant.

Funny thing was, I got used to that lovely dead weight. When friends handed me their babies to hold, I had to be careful not to whip them over my shoulder as they felt, to me, far too incredibly light and buoyant.

One physiotherapist worked literally for months to get Georgia to stand up on her own, and when she did so, all wobbly but upright (!), we cheered like Stanley Cup champions. We cheered but also had this great realization of just what a journey it would be from this to a few steps.

It took Georgia a number of years to learn to walk. During that time, she had physiotherapy at least once or twice a week, and occupational therapy to also help her gross and fine motor skill development. Therapy came in fits and starts, as she was allocated funded therapy in very short spurts, and we were forced to seek therapy privately as many parents are forced to do. Not cheap, but in many ways you don’t see yourself as having a choice, if you can manage to afford it, or can manage to give up other things to pay for it. She swung on therapy swings and was enticed to roll over or move by seeing her own image in the giant mirrors on the therapy gym walls.

Funny thing – while she was so different in so many ways, she was just like all those babies who are incredibly fascinated by, well, their own gorgeous selves. And once she developed her own will and motivation, she learned to scoot. Want to play in the dirt? Well that involves scooting out the front door to the garden. Want to “hug” that very tempting looking cat? Gotta scoot. Need to grab the garden hose? Yep, scoot.

All those things that many kids do naturally, she learned through the perseverance and wisdom of others and in unique ways. She learned how to scoot on her bum from a veritable army of physiotherapists and she learned how to sit upright from a horse. She eventually learned to walk on a treadmill (going at a speed of, oh, about .008 miles per hour) with two therapists holding her hands and cheering her on. Baby steps, as they say.

Eventually she learned to walk using a walker that she pushed in front of her. Thus began my reference to her as “the little old lady”. This is a title she still holds today for different reasons – mostly because of her wardrobe choices (large sunglasses with a hat) and her frequent little old lady expressions, such as “oh my, oh dear,” and the heavy sighs she makes as she comes down the stairs in the morning. Many kids with mobility problems that you see use walkers they pull behind them. And so with a front walker, Georgia became quite a spectacle, especially when I’d take her to a mall to practice walking.

People would literally stop us, watery-eyed saying “Awwww! Goodness, soooo cute!” Kids demanded that their dads and moms buy them “one of those!” Other kids looked seriously jealous – it was, after all, a pretty cool machine, that walker. Red. Covered with cool stickers. With a flowery plastic bike basket. You know, for carrying Thomas the Tank Engine books or soggy cookies. Stuff to get her down the hall and back again.

Georgia did learn to walk. She’s by no means a fast walker, or a person who can walk long distances. It’s easier for her to walk with her hand through your arm (yes, “little old lady” style). Her lack of balance and strength are still problems and while she has learned to walk and that’s a seriously huge success story, she has developed other kinds of new mobility problems that present challenges for her. She has a kind of dystonia now – or an abnormal kind of walking movement – in which her feet, knees and hips turn inwards so much that she trips over her own feet at times. She will likely, over time, damage her joints or require surgery. We now have new physiotherapists and new stretches and new exercises, and have tried new medications to relax the muscles to try to get her feet to turn out properly. So far, nothing has worked yet and yet she walks.

She walks. Some days I can hardly believe it.

She walks to College Street to visit the grocery store. She walks with her grandma to visit the neighbourhood dogs. She walks with her favourite uncle through his backyard and to the gardening store. She walks to the park to “see the kids.”

She walks with zeal to the bus stop to ride her favourite bus, the Ossington 63. It’s all good. Baby steps, as they say, baby steps.

Georgia was a fabulous baby.

Mellow, easygoing, and not at all particular about what she ate or what she played with. If you gave her Cheerios, she’d eat them. Smashed up peas? Devoured! She didn’t have a favourite blanket or best-loved toy so there were none of those anxious moments that other parents experience, the tearful discovery that, Oh no! “Pooh-bear” or “blankie” has been forgotten!

After Georgia was born, I was writing up my PhD and I remember having conversations with other moms who were commenting on “how lucky” I was to have such an easygoing infant when I had to be working so hard. In a selfish way, I felt that they were right. Many nights I’d write late into the night with Georgia at my feet in an infant chair, my foot rocking her back and forth. She’d watch me quietly and then doze. I’d write and all was well in the world.

Hindsight is a wonderful thing, isn’t it? I realize that I was fooling myself about how lucky I was and to add to that, I was so busy working part time and writing up a PhD, that while I provided Georgia with plenty of love and care, I was mostly just simply thankful for her way of being in the world that made my days easier.

But thankfulness gave way to worry, fairly quickly. It’s funny: that intuitive sense that people talk about mothers having doesn’t hit you all at once. You don’t actually feel yourself becoming more intuitive getting used to a new baby — in  fact most of the time you feel like you’re barely muddling along.

But I began to worry about Georgia’s mellow nature. I wanted her to have preferences and dislikes. I wanted her to object to mushy squash or ask for a cookie. I wanted demands and stamping feet. I longed for a tantrum and wished for peas on the wall. I hoped to share those goofy little stories with other moms about “Oh, Georgia and her well-loved blankie” and fill the picture albums with photos of her dragging her favourite teddy bear down the hall. No such luck.

This lack of will, as I would call it now, began to nag at me. At the same time, Georgia wasn’t meeting any of her developmental milestones. She needed to be propped up to sit, at six months and still at eight months.

We knew, from birth, that she was hypotonic (literally meaning “low tone”) but the effects of the lack of tone really began to be noticeable in the latter part of her first year, when she wasn’t able to sit up on her own and she stayed exactly where I put her on the floor to play – only because she made no attempts to crawl or move around or seek anything out other than what was passively within reach. She barely rolled over in bed and needed pillows for propping-up in her high chair, without which she’d seriously slip down into the chair, within minutes.

Our pediatrician, who had met Georgia at birth when he was covering the Neonatal Intensive Care Unit, recommended that she get physiotherapy at Sick Kids. We started to go there once a week and met Barb, who really changed our lives and became a good friend to me and what I would call a kind of “culture broker” for Georgia. Barb, an occupational therapist, who provided a mix of occupational therapy and physical therapy, taught me a lot about my own child.

She truly understood Georgia, could communicate with her in a particular way, and seriously tease her. Most of all, she knew how to press Georgia’s buttons and to make her work, to make her want something and to make her, well, sometimes really, really frustrated. While she was, on paper, providing physical therapy to help Georgia to learn how to sit up and to move through her world, what she actually did was teach me how to begin to understand, motivate and engage Georgia in the world around her.

She taught me about how important it was to “get down on the floor” with Georgia and engage her at her level. By doing this, I was also instructed to force her to choose a toy, to not hand her anything but rather insist that she reach for it and most importantly, to do every task herself. Her lack of objections and preferences meant that she would be quite content with a cracker and a few toys within her reach and for a while, I had thought that was just fine. Barb showed me that, nope, this wasn’t just fine and then helped me discover, or rather uncover, Georgia’s will.

One night, Georgia wanted to reach the tap in the tub to play with the water while she was having a bath. Instead of picking her up and plunking her nearer to the tap as I had been doing for months, I sat back on my hands and watched with some anxiety. It was difficult, watching her struggle and become frustrated. The simple (but obviously not as simple as we might assume) act of motor planning to decide how to move from one end of a slippery tub to another is a veritable feat. It took her more time than I could almost stand, and she was a mix of angry, confused and frustrated. She wanted that tap! While I watched and agonized, I also quietly smiled to myself. That anger, that frustration – there it was! Georgia wanted something. She was struggling to get it and discovering the sweetness of triumph over her environment and the thrill of putting your hands on something you want. Victory!

So it seemed that despite my worries, Georgia did have a strong will. And strong motivation, wants, preferences. In a way, it was uncovered then and has only grown more and more. She’ll take as long as it takes to awkwardly climb on a too-small hobbyhorse to ride it. These days, if we forget her favourite book when we’re out, there may well be a serious crisis. She carries last year’s class picture with her almost everywhere we go. For years, we also carried a Toronto Police Mounted Unit horse trading card (the fabulous horse “Vimy Ridge”) with us on trips to the grocery store and on long vacations.

Georgia very much prefers a mustard and mayo sandwich, thank you very much, and would choose salad or sushi over any candy. We’ve read the same bedtime story, at her request, for a few years now. We now have stamping feet and outright refusals alongside constant requests for a preferred toy or book, accompanied by “pleeeeeeeease! I need it!!!”

And those around Georgia now understand this. We buy four copies of a favourite book so we always have one at hand. We never run out of mayo and we ask police officers we encounter if they happen to have any horse trading cards on them (which, of course, works better some times and not so great other times).

We’ve embraced her will and motivation. We want it to continue to flourish and have actually taken it on as a challenge. She used to love (and I mean, really love) one of those talking toy parrots named Squawkers McGraw.

After a few months of constant play, Squawkers began to break down and we discovered, much to our horror, thatSquawkers was no longer manufactured. The tears. The tears! So we searched for “replacement” used Squawkers on eBay and Craigslist, which were delivered from all over the world and arrived in various conditions ranging from a pristine, gently-used parrot to one more streetwise parrot who arrived missing both his feet and smelling of cigarettes and alcohol.

We went through those parrots the way other houses go through toilet paper. When we moved house last year, we were amused (and impressed with ourselves) to find a total of six hidden Squawkers in hidden throughout the house “for emergency parrot needs,” including the streetwise ruffian parrot with no feet for moments of desperation. Georgia’s will has obviously met its match.

Over the holidays, we tend to think more about connecting with those both close to us and far away. Like everyone else, I also think about connections at this time of year – but in all honesty, hanging out with Georgia so much, I think about them all the time. Especially the unique connections I’ve experienced as a result of being her parent sidekick.

There are a surprising number of people who want to connect with Georgia and me based on the fact that she has autism. Their reasons vary, I’m sure, and many times they want to connect and just talk because they know someone with autism and they feel a kind of bond.

Often it’s other parents who recognize something in Georgia that they understand or can relate to. It’s a strange bond in a way, because every child with autism is so incredibly different on a day-to-day basis. But I do think that there really are truly shared emotional experiences involved in being a parent of a kid with autism.

Last year we decided to fly to South Carolina for our summer vacation instead of driving (as we typically do). As we boarded the plane, Georgia made her way down the aisle; saying “Hi there!” to every passenger and balancing herself by putting a firm greasy kid hand on each person’s shoulder as she passed by. I was apologizing to other passengers, nervously. As we sat down, the flight attendant came over and smiled, greeted Georgia warmly and said to me almost matter-of-factly, “I have a 24-year-old son with autism. Don’t you worry, she’s just fine.”

And, sure enough, she was. Just fine. She provided a fairly constant source of guffaw-worthy entertainment to adjacent passengers. After the flight attendant reviewed emergency procedures, Georgia yelled enthusiastically, “Really good job, Paula!!” And while other passengers offered a modest round of applause once the pilot successfully landed the plane, Georgia announced, “Woooohhh!!! Rock star pilot!!!”

At our summer rental in South Carolina we typically stay for a few weeks, and spend much of our time on the beach and in the pool. Last year, the father of a family whose stay overlapped ours approached me as I was reading poolside. Georgia was, as usual, floating about on her inflatable ring, wearing a bikini and fabulous too-small swimming goggles shaped like big pink crabs. As he sat down, the father took a long look at Georgia and then looked back at me, thoughtfully. With a heartbreakingly kind voice he said to me, “You’re doing a great job with her, you know.”

Taken aback, I smiled and stuttered something unintelligible. “No really,” he added, “I’ve watched you with her this week. She’s fabulous, so happy, so engaged and so social – that’s because of you and what you do with her. I can see it, and I know about it.”

There I was, on vacation thousands of kilometers from home, fighting back tears, feeling unexpectedly at home and chatting with this painfully lovely stranger who had reached out to me in such a deeply personal way.

I met his wife and he met Chris, my boyfriend and Georgia’s other parent. As the four of us chatted in the pool about how great the beach and pool are for kids and Georgia floated about around us, a lanky teenage boy who I hadn’t noticed more than in passing before, wearing board shorts and wraparound dark glasses silently slipped in the pool with us and started swimming practiced elegant lengths of the pool. His father introduced us to their son, Taylor, who has autism.

I’ve thought about these connections a lot and this one in particular. I often wonder about the motivation for reaching out to other parents who are strangers – as it’s happened to me often. I think much of the motivation is, as this father showed me, an ongoing attempt to engage the rest of the world in our children, to quietly negate the stereotypes of autism and to share with others just how unique our kids really are.

We collectively worry when we see autism depicted in a standardized way, a preconceived image or something predictably depressing. Yes, it’s challenging to raise a child with autism, but strangely enough, it’s not the tough stuff that parents talk to other parents about at length. Inevitably, we want to talk about the positives, the unique attributes of our kids and the joys – the things that make us proud, that make us happy.  In that way, we’re really not unlike any parent. But I think we feel an innate, safe bond of understanding alongside a mutual appreciation for the magnitude of difference, with parents of other kids with autism.  We talk about the moments in which autism, for us a constant presence, seems to take a backseat for a while.

Georgia is not at all like the movie or TV versions of “autism” — nor was Taylor as it turned out. Georgia is tenaciously social and her default setting is happy, even goofy much of the time. She has a wicked sense of humour and never (never!) tires of her own jokes. If a chair happens to get knocked over, that is the funniest thing she can imagine. She enjoys scrutinizing photos to find someone who might have their eyes closed (“omg that’s hilarious!”) and considers basic slapstick the highest form of humour.

Doing home renovations? If you happen to leave an old toilet on the street for garbage pick-up, we’ll laugh about that for weeks, even months. Put a Tupperware cake tin on your head and she’ll laugh so hard, she’ll cry. The best part is that she has figured out if she puts the cake tin on her head, you’ll laugh too.

She’s learning how to make jokes and include others in her humour. Our house is filled with, “Look!!! That’s REALLY funny, isn’t it?” many times a day. When she’s enjoying and sharing a joke, it’s really very hard to think about autism.

– – –

Taylor was a champion swimmer. He had been swimming in that same beachside pool since he was a toddler. His parents saw that he had a natural athleticism when in the water and pushed him into lessons and training, alongside neurotypical kids. They signed him up for the swim team, despite protests from worried coaches and other parents who were concerned that having Taylor on the team would hold their kids back.

Guess what? He succeeded, won medals, swam harder and faster the more he was encouraged. Still extremely quiet around others, he opened up when swimming and when talking about swimming, according to his parents. He was, maybe even, Olympic material one day.  I listened, rapt, to Taylor’s parents talking about him and watched him a lot that day.

On the deck of the pool, Taylor tripped over his feet and avoided eye contact by ensuring his wraparound glasses were always on. He was silent, detached, and noticeably awkward. Until he dived into that pool. The things that made me recognize Taylor as “autistic” seemed to vanish.

But in the water, Taylor was a smooth, sinewy presence. He moved through the blue, with mastery and skill that was breathtaking, as graceful as ballet. Taylor was, undeniably and absolutely, beautiful.

As parents, we think a lot about our children’s trajectories. Where will they go? What will they do? Who will they become? We think about this so much because we realize the awesome responsibility we have to support kids to fulfill their dreams, achieve their goals and, as if that’s not enough, make sure they also learn the skills of surviving in the world.

We so often assume all kids’ trajectories are the same. I was at an academic dinner recently and my colleagues were talking about their children, many of whom are teenagers. The talk (of course!) turned to academics. “Where is your son hoping to go to University?” and “You have to start planning for post-secondary now!”

It was only a matter of time until the inevitable happened. The lovely and kind woman sitting next to me turned to me and asked, “So, what subjects is your daughter strongest in? Are you thinking about what University she’ll attend? It isn’t long after all, just four or so years!”

I took a strategic and leisurely sip of wine and thought about how to respond, in a way that not only respects my fabulous kid but also doesn’t make this lovely woman have one of three predictable reactions: 1. to feel bad and look at me with a pitying, sad look; 2. to try to tell me that “Oh, you never know!” or 3. to totally downplay the great achievements of her own kids, e.g. “Meh, that full Harvard scholarship with automatic entrance to MIT for grad school, nothin’ special there!” These are the three typical responses to any answer to an academic question that involves “autism” and “developmental delay”.

Georgia’s trajectory is likely to be far different than many other kids. This, for me, has been a struggle. To readjust my expectations. To take real pleasure in small achievements. To be genuinely proud that, at age 13, she has learned to tell time and recognize the word “cat” without my having that twinge of regret that she’s not doing complex fractions or reading Catcher in the Rye.

I’ve grappled with this – I’ll be honest. I’m an academic, a driven high-achiever and a geek who has always been immersed in learning. I was reading poetry and burying myself in novels when I was 13. Did I expect that my daughter would be just like me? Well, maybe. We all kind of do, in a way, don’t we? A love of math, a talent for drawing, an aptitude for sports. We hope that we can find a common ground for enjoyment with our kids, a shared strength handed-down, a kind of camaraderie via communal passions. I’ve struggled to adjust my expectations and be genuinely interested in things at her level.

It’s tough some days. Case in point: we’ve read the same board book, at Georgia’s request, before bed since she was, oh, about 5. Every night. And it’s always interesting for her. Which, in a way, both fascinates and amazes me.

While typical 13-year-olds are learning how to be responsible and independent, we are teaching Georgia to tie her shoelaces, to look both ways before she crosses the street and to recognize her street name on a sign. These are NOT one-time learning opportunities. These are multi-year commitments.

Georgia can’t understand why all movies don’t provide 3D glasses to wear. She cannot use a knife to cut things well and hasn’t yet quite mastered the skill of eating soup without wearing most of it. She needs to be reminded to watch where she is walking and hold handrails. She worries that when a plane is at altitude it’s not moving at all. She cannot touch her toes. I help her get dressed each and every day and do much of the work myself while she chats and giggles. She cannot read more than a few select three-letter words.

However, listen to this. She has learned her home phone number this year. She can tell time and she does that almost too well.  She can maneuver an iPad and the three TV remotes better than anyone else in the house. Sheremembers the name of every dog and every baby she’s ever met. She can brush her hair, mostly (it’s okay, we encourage the wild look in our house), can brush ALL her teeth, can wash her face and put on deodorant (if you’re not picky about it being in the exact right place). She uses her finger to trace words in a book and knows that rice is a grain and butter is dairy. She has memorized the signs for Ikea and Metro and (okay, okay) the LCBO. Last year during on our summer vacation, on about day 10, she simply and unexpectedly dived under the water and that was it – she was a swimmer. She dances with an innate sense of rhythm and soul. She has most Bob Marley songs memorized and can also sing a pretty sweet rendition of “Hey Jude” – with real feeling – in the back seat.

The thing is, I’ve realized a few things in what I’ve felt was kind of a selfish struggle on my part with this, well, difference between us. I’ve realized just how incredibly hard Georgia works to do the smallest thing, to achieve the kinds of things other people simply take for granted. I’ve learned to appreciate just how much motor planning is required to put on tights and a t-shirt. When she uses a new word out of the blue, I’m in awe. I’m absolutely thrilled when she arrives at the back door, ready to go, coat zipped up, hat and shoes on – all on her own.

I’ve learned patience beyond belief and an appreciation for the unexpected joys found in what others consider to be tedious repetition. I’ve encountered pleasure in the mundane and reasons for celebration in the everyday. The small and often hidden victories are, I’m discovering, almost always the best.

Having a quirky kid means that you get to laugh a lot. Really. I consider Georgia’s quirks to be the best things about her and the things that make her truly a fascinating little person who manages to charm almost everyone who meets her.

Many theories of autism talk about how difficult it is for people with autism to generalize skills or knowledge, that is, to be able to do or know something in general, not only in the original context in which it was learned.

Georgia demonstrates some pretty unique aptitudes in terms of generalizations. For example, every stranger who happens to be a man over 60 is greeted as “Grandpa.” She certainly knows who her grandpa is but hasn’t quite figured out the rest of it. The white hipster guy with the beard and long hair who works at Chippy’s Fish and Chips across from Trinity Bellwoods Park is usually greeted with a “Hey, it’s Jesus!!!” And every black man with dreads is greeted warmly by Georgia as “Hey, Bob Marley!” We have been lucky on this front. Most men, while slightly taken aback, have so far been okay with being called Jesus or Bob Marley.

The TTC is a seriously fun experience with Georgia. She loves streetcars and finds herself unable to keep from singing various train songs when riding the often otherwise quiet subway. Without hesitation, she breaks into a disarmingly loud off-key, enthusiastic version of “She’ll Be Coming Round the Mountain” as the doors close and the train plunges into the tunnel.

On the TTC, she really hasn’t sorted out personal boundaries yet. There’s one Dundas streetcar driver who looks like her Uncle Ralph. Again, she knows it isn’t actually Uncle Ralph, but never fails to greet him with a hearty “HI UNCLE RALPH!” She’ll ask the person sitting beside her why he has no teeth. Be forewarned: if you are sitting anywhere near Georgia on the streetcar having a rush-hour snack, she’ll turn to you with an outstretched hand and a cocked head, and ask: “Hey, can I just try one of those chips please?”

And Georgia likes babies. Most of all, she really likes to know babies’ names. This means that, during those few moments in the grocery store when she is doing “Georgia’s job” (guarding the shopping cart while I bag apples), she inevitably instead wanders two steps over to approach a parent with baby and asks, using her version of a serious grown-up voice (somewhere between Darth Vader and Damien from The Omen), “What’s The Baby’s Name?”

It usually comes out more like a demand, rather than a friendly question. But keep in mind, she’s still a cute 13-year-old in a pink hat and tights, so the perceived threat level is pretty low. Reactions? Well, they range from kind and informative (“Oh sweetie, his name’s Hunter!”) to alarmed and frightened. Occasionally it results in parents covering up their babies in haste. For us, it’s quite amusing to see other parents react to this strange little person.The best part is encountering the same parent and baby in each subsequent aisle of the store, where each time they are greeted with the same request.

We’ve worked on this. Encouraged her to use a less scary voice. Told her to ask once and no more. When we told her that she shouldn’t approach people but must keep both hands on the shopping cart, this resulted, hilariously, in Georgia gripping the cart with white knuckles and yelling across the produce section, “WHAT’S THE BABY’S NAME!?”

Despite her complete lack of attention and adherence to social norms, Georgia tends to spread a little sunshine into most people’s lives. Her absolute joy at being on a streetcar or subway is infectious. Her complete lack of subtlety strikes some as perhaps unnerving but refreshing – she did end up having a long conversation about ill-fitting dentures with the person on the streetcar who had no teeth. She once cracked up an entire Starbucks after a woman let out a shockingly loud (and obviously mortifying) belch. While everyone in the place pretended not to notice, Georgia exclaimed in a rather thunderous half-statement, half-question: “She burped!? Yes, she burped?! She burped!?”

She’s always looking for the facts: confirmation of bodily noises, baby’s names. She wants to chat with interesting people: Bob Marley, Jesus. Most of all, she is, I realize, simply looking for ways to engage with the world in her own style. It’s not clear what my role is (and this will change as she gets older). Partly, my role is to let her take the risk, while also trying to make sure she understands some of those social conventions.

It’s tricky, I’ll admit, trying to teach her those norms without squashing that enthusiasm, that lovely openness to the world and, always, the potential of that truly joyful encounter.

I have a kid with autism. Correction – I have a super great kid who also happens to have autism. She’s a complicated, loving and funny girl who is also the most fascinating person I’ve ever met. But all this is so difficult to put into a few words.

The way I feel about Georgia is complex and layered, and wrapped so very closely around my heart. Peeling back those layers and putting them into words is really, really hard for me. But over the next few months I hope to uncover some of these layers, as I write about the fantastic, invigorating, inspirational kid who lets me live with her.

When Georgia entered my life 13 years ago I had no idea what I was in for. Like many new moms, I had read all the books in preparation and afforded myself those mom-to-be fantasies about the accomplished musician, world-renowned poet or caring doctor she would be. The afternoons of movies and shopping we’d have: just us girls. I remember being nine months pregnant and on bed rest in a lounge chair in my parents’ backyard, dreaming lazily in the summer sun about “the girl who would be.” A short time later, back at home, the parenting books were in a box outside my house – free for the taking – and the visions I had for my future daughter far less clear.

The process of figuring out Georgia’s diagnosis was much like that of other parents. After she failed to meet most of her developmental milestones and wasn’t able to walk at age four, she underwent a full three-day assessment, at my insistence. At one point during this grueling process, a resident informed me in a way I think she actually felt was caring that I might “just want to institutionalize Georgia and move on. Make a life for yourself.” Huh? Wait, this was my life! Move on? To what, exactly? I remember that before the assessment I had been anxious, and almost relieved that something was going to be done. At that moment, I felt cold, panicky and alone.

I remember taking Georgia  from the physician’s hold, and asking for the assessment to stop for a few minutes. I needed to hold this lovely person tightly, close to me in that moment and to show to the others in the room that she was my delightful little girl. Mine. My instinct was all mother-lifting-up-a-car-to-free-my-child, take her and run.

But I didn’t. We lasted the three days and when I sat down with the psychologist and physician to discuss the findings, with Georgia playing in the corner of the room, I was told, gently, that she had autism. And a significant developmental delay. And both mobility and strength problems that would persist throughout her life. Funny thing is, though I’m a health care professional, autism hadn’t even occurred to me.

I kept saying the word over in my head, and it scared me. Autism. Out loud in the room, the word hit me as if I had run into a brick wall. I wasn’t prepared to hear it, and I was someone who was always prepared. I was angry at myself for not considering it, for not reading all I could have read about the possibility, for not having questions at the ready. We talked for a long time, in a blur, and I remember simply wanting to be out of there and in my car, with Georgia, heading somewhere, anywhere. As it turned out, we first just sat in the parking lot together in the car for a good hour, while I sobbed quietly and she played in her car seat, happily oblivious. And then I drove where many of us drive when we’re at a point like this: my mom and dad’s house.

When I finally got home, I allowed myself a few days of lying on the couch when I wasn’t caring for Georgia or answering the emails of my Ph.D. supervisor, who was of course wondering why I had fallen off the radar as I was finishing up my dissertation. I let myself feel deeply sad and grieved for some random fantasy girl I had never met.

And then I got off the couch, and I. Went. To. Work. I put that sadness and grief aside and instead focused on the most important thing at that moment, and still today: making a life for Georgia. I read, and researched, and talked to people, to everyone, anyone who wanted to offer advice, or share their experiences. I got down on the floor and played, I put on music and we danced, I took her the park and propped her into the swings and watched her laugh. I encouraged her to squash peas and splash bath water. When I found a book or piece of music that she responded to, I quickly bought every version of it and every book in the set. I took her to local cafes and restaurants, and engaged in her that busy, chaotic thing that is everyday downtown life. I filled her life with as much colour and music and words that I could. And I watched. And waited, and learned.

So now we’re here. She’s 13 years old. She loves Bob Marley, dogs and babies. She has a vast collection of safety helmets and police horse trading cards. She prefers sushi over candy, and tights over jeans. When she’s angry, she growls, “Piece of brown bread” – an expression that we now all use when we’re especially ticked off. When she’s happy, she barks.  She is a great swimmer and can do some pretty funky dance moves. We’re completely used to her and she puts up with us. It’s probably a lot like other families with teenagers. Well, probably not. But that’s absolutely okay. We like it this way.