Small Victories

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.

Baby Names

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.