Early Days, Part II: Walking

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.

The "Catbox"

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.

Bunny Ears

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.

Early Days, Part I: Finding Georgia’s Will

Floppy Ears

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.