Undeniably Open for Discussion

A few weeks ago, I wrote a guest blog entry for the truly fabulous blog Fit, Feminist and Fifty (which if you are not reading regularly, well, you should be). The blog entry was about my own reactions to and reflections upon the new ad campaign for SickKids Hospital in Toronto. If you haven’t seen the new ad, take a look here, it’s worth it.

I’m not going to repeat my blog entry here, but wanted to further reflect on the thoughts and discussions I’ve had and have read since publishing the blog entry, based on social media discussions and commentaries as well as others in the wider media, including Andre Picard’s take on the ad in the Globe and Mail along with Louise Kinross’ views on the ad as published in the Holland Bloorview Bloom newsletter.

When I first wrote about the ad campaign, I really feel that I stepped outside of my own comfort zone. As I said in the blog entry, I didn’t want to like the ad. I actually felt a vague sense of unease and betrayal-of-self when I watched it and it both moved and compelled me. The language and imagery of “victory” and “fighting” illness or disability, implies both winners and, inevitably, for those who are ill and are worsening or for those perhaps living with chronicity, it implies non-winners, or (it’s hard to even type this) losers. Sigh. Not an image I’d ever support. I agree, one hundred and ten percent, how deeply problematic it can be to use confrontational, and even violent battleground and wrestling imagery to suggest winners and losers in the random lottery of health and illness.

There has been a great deal of discussion and debate about the illnesses or diagnoses referred to, in the ad and the surprising inclusion of autism in the ad alongside cystic fibrosis, cancer, and kidney disease. I’m still mulling over the inclusion of autism in this group of childhood illnesses, as something to be overcome, or even “cured”…? From the perspective of ableism, putting autism in there is arguably akin to suggesting that it is a condition seen as less-than-okay, as unfortunate, as something to be fought against, figured out, even solved (keeping in mind that “the puzzle of autism” is an extremely common theme out there) rather than, quite simply, a different way of being in the world. I am aware that I come at all of this, not as a person with autism, but rather as a parent of one child with autism, who also has a significant developmental delay and some physical limitations as a result of her low tone and dystonia. A child who struggles with tasks and concepts and skills many of us take for granted. A child who fought her way through three years of intense physiotherapy to finally toss aside her walker at the age of 5 and walk imperfectly but independently. My view of autism reflects only my own experience – and the experience of my family – and I both recognize my position of privilege (looking “in” from outside autism) and my lack of understanding of what it means to be a person who lives with autism (and the marked diversity of experiences of “living with autism”). Do I see autism as “something to be cured”? No. I couldn’t imagine Georgia as anything different than what she is. But, would I remove her struggles, if I could? Would I put on warrior gear, unsheathe my sword and yell “Charge!” against those ever-present struggles? Yes. Yes, I would. Her different way of being in the world is, in fact, a double-edged sword, with wonderfully unique qualities and attributes alongside often-tiring daily challenges.

I wrote, in my original blog entry, about the compelling images throughout the ad. One smart and thoughtful friend who is a NICU nurse, noted that, for her, none of the kids actually looked like the sick kids she encounters. That, for me, was striking and food for thought. Many of the images – while all “sick” kids, we presume – are clear-eyed children who meet the gaze of the camera purposefully, with a focused strength. There are no images of a child who often can’t make eye contact, like Georgia. Or of a weakened child, swollen from the side effects of medication, with tubes and devices sustaining life. There are no images of a Down’s Syndrome child after cardiac surgery, or children with horrible surgical scars, with draining wounds, disfigurements or tracheostomies. The images of a child – from the side and behind – pulling a walker and a young man with an amputation, along with the image of a Betadine® solution scrub on an abdomen in preparation for surgery were the closest to some of the realities of the experience and imagery of “sick kids”.


                                                                                     Screenshot image from Sick Kids Vs. Undeniable 


But let me be clear – again – about the two things I think this ad campaign does well. First, it makes you see the child first. As I said in the original blog entry, you see the child first, and not the wheelchair. You see – and hold – the gaze of the child and you notice the posture, the presence, a small purposeful movement. Only afterwards do you see the illness, the injury, the IV pole, the cancer.

Second, it shows – to me – a clear message about the strength of kids. About the resilience and the presence of children. Losers and winners aside, it demonstrates that there are inherent strengths in each of us and in every child. Even a sick child. Even a child with a chronic disease, with cancer, with a disability.

But I think that the absolute best side effect of this ad is that it has people talking. Talking about children. About children who are sick. We don’t do this very often, except in hushed tones. We don’t have enough dinner conversations about kids with cancer and what we think about it all. Many of us worry about talking about a child who is seriously ill, about what the right words are, about what not to say. We may speak with pity, with sorrow, with regret and worry. We speak about children who are sick tentatively, haltingly. I’ve experienced so many hushed tones, hesitancy and uncertainty when people talk to me about Georgia. I understand it, but I want to talk – all the time! – about Georgia, about her autism and her physical challenges and victories (and thus this blog). I am more than perfectly fine with talking about our almost seven-year crusade to conquer the putting-on-of-socks. I’m as proud of that accomplishment as other parents are of scholarships, athletic trophies and academic awards. But not everyone is comfortable talking about it like that – and so I’m glad maybe we can talk about all kinds of things like this, just a little more openly, because of this ad campaign.

I’m not sure if opening up discussion was an intended side effect of this campaign or an unexpected event in the midst of seeking donations. SickKids, this week, published not only a next ad in the campaign, but also, and interestingly, an online press release with further commentary on the campaign, both released a (maybe purposeful and planned) good month or so after the release of the original campaign ad – just a perfect amount of time to stir up plenty of discussion.

There’s no right and wrong in this discussion – some people love the campaign and others object strongly to it, all with their own very good reasons – but even with the polarity of responses, the one thing we are all doing is talking. Talking about sick kids. About health and illness and our perceptions of it. About how we think about children, and the experience of childhood when faced with illness or disability. About what it means to be strong – or not. And that is, undeniably, a very good thing.


That Lovely Little Tree

I haven’t written anything in a long while here.

It’s been a tumultuous year, with many ups and some downs. At work, it’s been stressful, mostly. Some pretty negative elements permeating a lot of what I do, in little ways. On some days, I feel like work is a death by a thousand cuts. On better days, I feel like I can actually maybe even get something done that is important and meaningful. On the best day, I’m excited to leave the house to get there. But those best days have been few and far between over the last year or so. I’ve come home discouraged more often than not, needing time and space to sort out how to approach whatever challenges that will still be there in the morning to be tackled. I’ve had sleepless nights, tossing and turning, ruminating and worrying. I admit, I’ve been a present – but distracted – mother.

The weight of work – along with my own reactions to things that happen and the emotions I carry with me – well, it’s all felt very heavy to say the least. And every time I’ve sat down to write about life with Georgia, I’ve worried that whatever I write will just end up mostly being about life with me.

There have been ups though. Well, lots of ups actually. In September, Georgia’s parents got married (oh yes we did!). And then, in April, Georgia’s dad became her for-real dad, and – boom! – our family was solidified, legalized, recognized. It was a wonderful culmination of all that we have hoped and worked for: A court room full of smiling people in tears, each so touched by Georgia and all so happy for us.

Through all of this tumult, Georgia has remained, well, Georgia. Like a lovely solid little tree you plant in the garden and water, forgetfully, robotically, watering can in hand while you’re making a grocery list or thinking how to answer to an email. You walk by the tree every day on your way out and you take note, while preoccupied with other things, that it’s still standing. Then one day you look at that little tree and you stop – taken aback. That same little tree is now in full blossom, growing taller than the fence, flourishing quietly and earnestly.

Georgia has just continued to do the things that Georgia does. And to love the things Georgia loves. And in that earnestness, she has flourished. She’s gone to the Beatles tribute show, Rain, and enjoyed it more than anyone else in the whole concert hall. She’s chosen a dress online and jewelry for a wedding and an adoption party. She’s insisted on wearing a pair of fancy dress shoes all night with pure joy even though her feet were hurting. She’s spent a night in Niagara Falls chilling in front of a basketball game on television eating pizza on a pull out couch in a hotel room. She’s fed Dorothy the dog most mornings and has been our grocery Sherpa with her giant tricycle basket, many times. She’s learned to read about a hundred more words than she knew last time I wrote anything here. She’s adopted a whole bunch of fancy new conversational tactics including the ubiquitous adolescent response, “I dunno” with a sly half-smile. She’s got a wonderful workplace opportunity at school, as a dining room assistant in a local restaurant. She’s learned to put on socks by herself.



(Incidentally, of all those great accomplishments, the socks are the bomb, folks. Seriously. If you only knew just how difficult it is to learn to put on socks when you have motor planning challenges, consistently clammy feet, a general lack of patience and a low threshold of frustration. I have no memory of learning to put on socks myself, but I have plenty of memories of the multi-person efforts and processes we’ve put in place to help Georgia learn to put her socks on – the best sock memory being the day I handed her socks that I would help her put on, got distracted for a moment and returned to find her, fully socked and ready to go forth.)

The thing with Georgia is that, despite whatever else is going on in our lives, she remains a constant. She’s my grounding force and the common denominator for everything else in my life. In some ways, her constancy can be frustrating or, at times, annoying. She’ll repeat the same phrase time after time if faced with something that is frustrating or anxiety-causing for her. She’ll play the same loud “crying baby” video on her iPad until we have to insist she watch something else, anything else. She’ll ask you if you let her, one thousand times a day, whether or not you think that something is funny. Repetition, sameness and constancy are qualities she embraces and seeks out. She has loved many of the same songs since she was a toddler. She carries the same books with her wherever she goes, and embraces many of the same rituals each and every day. That sameness, while at times, frustrating, can be a wonderful anchor in a disorderly world.

And the best part of it is that while you’re focused momentarily on that sameness, she goes and changes and evolves on you and there you are. She does this now a lot of the time, without me right there, helicoptering around her. She chops onions. She learns to read. She memorizes the bus and streetcar route numbers. She finds the radio station she likes on her own and relaxes on her bed, listening to her favourite show. She washes her own hair. She gets a job. She goes to dances. She meets people and forges friendships that you only find out about afterwards, if you find out at all.

The other day we were driving in the car to go grocery shopping. Adele’s Hello came on the radio. I asked her if she knew who was singing and, yes, she did. I asked her if she knew the song. No reply. And then out of nowhere, as we sat in the car at a stoplight with the windows open, came the powerful chorus in the song, and suddenly this kid in the passenger seat was positively belting it out with Adele. Boom. I was speechless. People in cars beside us turned to look. It was like she’d been practicing the song for weeks, but I knew she hadn’t. She just kept that to herself until she wanted to let it out and let me see. It was, in a word, impressive. And until that moment, wonderfully covert.

The thing with that lovely little tree is that there’s a whole bunch to it you can’t see and that, occasionally you forget about. The intricate and strong roots, the tiny growth within the blossom buds, the leaves that are working their way to full bloom. You go about your day, and sometimes don’t pay much attention to the constant presence of that tree in your garden, that day after day is just there, just doing it’s own thing.

And then one day you come outside and stop where you stand, in awe, with the watering can, forgotten, dripping water onto your shoes while you take it all in. The branches of that lovely little tree are full of beautiful pink blossoms and green leaves with branches reaching out and reaching forth and you come to know that, well, really separate from you, and yes, even in spite of you, it’s been busy achieving wonderful things and, while looking like it’s standing very still and constant, is inevitably heading at a high speed in every direction, towards all kinds of new heights.

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Compartmentalization. It’s so easy. Right?


A colleague told me recently that she was able to, now, put upsetting or stressful situations at work aside since having her daughter. The experience of having a (lovely) toddler has helped her somehow no longer worry or ruminate about work. She used to be at home, upset about work things, but after the birth of her daughter, she’s learned to just let it go. It literally doesn’t bother her anymore.

Well, I have one too. A daughter, that is. I’ve had one for about 16 years. And I’ve yet to figure out how not to let things or situations – that I perceive as upsetting, unjust, uncivil, mean or dishonorable – bother me. And they come in all shapes and forms. Work things. Research things. On-the-street things. Things with friends. Things with bureaucratic government offices. Things with families. Interactions with colleagues.

I admire my colleague’s ability to compartmentalize. It is a skill that comes in very handy in life. In some less explicit ways, I think I’m very good at it but only in very particular ways. I work very hard (now) to actually go “off the grid” while I’m on holidays: to spend my days swimming and playing with Georgia, reading books, walking on the beach and generally avoiding my lurking laptop. I haven’t quite mastered it – I think actually leaving the laptop at home might be a laudable next step, but not sure I could do that (!) In other ways, I am so not good at compartmentalizing. My mobile device insists on showing me work emails on the weekend (I know, I know) and the little buzzing in my pocket reminds me that there are things that continue over Saturday and Sunday that will want attention and time on Monday morning, if not before.

But I guess I wonder a couple of things. First, is compartmentalization of the roles we have in life really possible? And why do we place so much value on being able to “separate” your roles?

In some ways, I think compartmentalization is neither ideal, nor possible. And I also think it can be stressful – and somewhat disingenuous. I’m Georgia’s mom, but I’m also a professor and a nurse – and all those things together make up who I am, along with lots of other kinds of roles, experiences (some good, some not so good) and ambitions. I’ve worked hard at all of those roles and to require myself to take one hat off in order to put another one on, seems dishonest in some way.

There’s so much now about how the average North American worker cannot possibly compartmentalize work from home life. The discourse about work now focuses on the ever-encroaching extension of work into our home and family life, the ubiquity of technology allowing us to be available 24/7 for our employers, the growing guilt over taking vacations (and the rise of the “stealth” vacation – an idea I both love and worry about) and the art of setting an email vacation notice that actually allows you to furtively check messages while you’re on the beach or with your family at the cottage. At the same time, there’s also the ongoing discussion and debate about (primarily) women’s experience in the work life – of how to manage conflicting duties, and how balancing work and family often means acknowledging that it’s very difficult and quite frankly often impossible.


There are so many ways of being in the workplace as a mother. I’ve worked with strong and thoughtful women who never talk about their children. I’ve also worked with others who have their office walls filled with finger paintings and who take calls from crying 5 year olds while in a meeting.

At some point in my career, it felt impossible for me to separate Georgia – and being a mother to her – from my work. In my classrooms and courses, I often talk about issues related to disability, acceptance, the social construction of concepts like “normalcy” and “health”, and broader topics in mental health ethics, disability ethics and pediatric ethics. I teach concepts related to family roles and functioning, and family-centred care. And at some point, I decided that, as I encourage my students to bring and share their experiences in class in a thoughtful and reflective way, I also could do the same. And I should. And it’s been, for the most part, pretty successful. I have students who were in my very first health assessment class 13 years ago, who are now friends and colleagues, who remember 3-year old Georgia. And who have, I think, thought about her, here and there, at certain times or in reference to their own experiences.

One of the foci of my much-neglected research work (welcome to academic administration) is the role and experiences of parents in providing therapy to their kids with special needs. Every single parent I’ve interacted with has had an impact upon me, and has helped me to reflect upon my own views. As a researcher doing work “in my own backyard” so to speak, I am able to differentiate my own feelings about what parent participants tell me from the analytic process – and I have, of course, methods of ensuring the rigour of data analysis and pay careful attention to that simply because I must. But I acknowledge that, when I am right in that murky place where one is living and breathing data analysis, there are middle-of-the-night hours lying awake and thinking thoughts of Georgia mixed in with all those other kids I’ve heard about, through hours and hours of parent interviews.

For me, right now, work is stressful. Frankly, parts of it are downright discouraging. There are plenty of things I’d like to change, incivility I’d like addressed, and things that both discourage and demoralize me. I’m learning a lot and maybe reassessing what I want to continue to do and how I want to do it. I’m at a kind of turning point forced upon me not only by my own choices about what I’ve chosen to do, but those around me. I know that’s life. But there you have it – that’s life. That’s not work. Or rather, that’s not just work. It’s everything.

My reactions to these work problems and stresses are, very much, built upon things I’ve learned being Georgia’s mother. The lack of compartmentalization – and the subsequent crossover of emotions, of things I’ve learned, of values I try to uphold – is inevitable. This means that, yes, I do bring these problems home, that I ruminate over evenings and weekends about difficult situations. That while I’m reading to Georgia, my thoughts are elsewhere. That while I’m at a family dinner, I’m talking about what I’m dealing with, at work. That while we are out for an evening, I’m upset about what’s just happened that afternoon at work. I have been known to cry on the College streetcar on the way home from work.

But then again, it does work both ways.

There are times when I’ve had a particularly bad day that I simply refuse to open my computer in the evening and I hang out with my kid. Drinking in her silliness and joy. Taking walks to find junk on sidewalks and then laughing uncontrollably. I’m very present. Spectacularly present. So “present” that I feel borderline defiant. Furthermore, being Georgia’s mom, I’ve developed some approaches and attributes over time, and I try to bring that same kind of approach to problems at work: patience, calmness, and a willingness to face up to difficult dialogues. It often doesn’t work – and I’m met with challenges again and again. I haven’t yet achieved a kind of seamlessness in my approach to all things across all facets of my life that one might aim for, clearly. I’m okay with that. Still working.

So then should I be working harder at compartmentalizing? Well, I don’t have a clear answer. I think there’s value in thinking about it, in deciding first whether or not the idea of compartmentalizing your roles makes sense for you. And, some people, like my colleague, seem to have happened upon it quite naturally, without apparent effort. I don’t know if, once achieved, compartmentalization is healthy or sustainable. I don’t know if it means you just bury things or deceive yourself in some ways.

And while I know one can compartmentalize one’s time (“It’s 5 pm and I’m done work now so there!”)…I don’t know if compartmentalizing our personal and emotional reactions to situations is something that we can ever realistically achieve (and I think this is one of the key problems with the whole notion of compartmentalizing). I do know two things though. They sound somewhat trite compared to all the stuff that’s inherent in this discussion, but I think that they’re both true and they serve me well. First: I’m a better mom to Georgia, much of the time, because of my job and what I’ve learned there, even in the very tough parts of my job. Second, and perhaps most importantly, I’m far better at my job, even the very tough parts, very much and very clearly because of being Georgia’s mom.


The Trouble With Choosing

It’s been a while.

Recently, I listened to a mother of a 15 year old by with autism on CBC Radio talk about the stress of experiencing her son’s serious meltdown in a mall – as crowds gathered to record the scene with their mobile devices and, thank goodness, one smart and intuitive security guard stepped in to help – and empathize. It was timely, listening to this, for me. And as I thought about it even more on the College streetcar on my way into work, I decided, okay, maybe I really can get up the nerve to write about this. I am not the only mother experiencing this.

For my frequent flyer readers, it’s perfectly okay for you to say that you think you know Georgia a little bit. You do! You know her sweetness, her laughing presence, her love of a good joke or a discarded toilet on the street, the twinkle in her eye. Her lovely and loveable self. We’ve often said that Georgia’s default setting is super-happy, and have reflected on how really fortunate we are that is the case.

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But this year, something has changed. And for the life of me, I don’t know what, but I am figuring it out, ever so slowly. Part of my difficulty with writing about this is just simply admitting that my Georgia – who I have held so close to me – is having difficulties. That, together, we are having difficulties. The kind of difficulties that we imagine, with great empathy, belong only to other parents. Nothing insurmountable. Nothing devastating. But a difficulty that flavours our days and tests our patience, that left unaddressed will make life for Georgia- and for all around her – much more difficult.

Two examples.

A few weeks ago on a typical school morning, Georgia wanted her bird print tights. They were in the wash and she was offered the second best pair of tights: the ones with the flowers that she loved the week before.

No. No. No, no, no. Not those tights. No, no, no, no, no.


Strong preferences over the little things that most of us make with very casual daily decision-making processes – like the clothing we wear – have become a new battleground in our house. Tights and hoodies are the weapons and Georgia is well-armed. On a typical day, she will most definitely want the hoodie that is too heavy or too light for the weather or the one that is filthy in the laundry, or hanging wet after washing. In other words, any of the other six she could or should wear, are not good enough. She’s taken now to wearing one and carrying around her two next choices – just so I can’t get my hands on them to wash.

On this particular morning however, the impassioned objections to flower print tights (that were, ironically, the only solution the week before that when they were in the wash and unavailable) culminated in angry bursts of shouting and vigorous arm flapping while I was helping her get dressed. The same kind of thing we’ve been experiencing many mornings. But this day produced a different result: a Georgia fist tightly formed and lacking intent, with unexpected strength and indomitable emotion, flew into my left eye socket.

My eyes watered.

I watched little stars fly across my field of vision.


This weekend, we took Georgia to a Blue Jays game. It remains one of her favourite things to do: get a few nosebleed seats, a well positioned bag of ballpark popcorn between us, a cold apple juice and some overpriced beers for the grown ups. Add some sun and an open Dome, and there you have it, a perfect Saturday afternoon. Almost perfect, that is.

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She loved the game. She cheered for the home team and booed the visitors. She watched the clock carefully, shook what she has for the Dance Cam and looked through the stands intensely to locate the mascot. She was done (you know – done) by the bottom of the sixth. We insisted she stay until the seventh inning stretch as we know she would miss singing Take Me Out To The Ballgame, but that might, in reflection, have been pushing it.

On the way out, we told her she could buy a team shirt. Wonderfully and horribly, they all have numbers on the back. She couldn’t decide between 55 and 10. Back and forth. Back and forth. Then “both”. Then 10. No, 55. No, 55. No, 55. Okay, 10. No, really,10. Then silence. Then gesturing. Then looking away. Then wringing her hands. Biting her lip. With only just mildly rising worry, I decided for her and bought number 10.

I turned my back for a few seconds to pay, to be startled by a blood curdling screaming and foot stamping. Shocked, I turned to witness Georgia – yes, my Georgia –  in the middle of the open area screaming, sobbing, begging for number 55. I paid, and gulped down my own anxiety. We held her close to us and she continued to cry, sob, scream, tripping on her own feet, oblivious to the stares, as we pulled her to the exit, talking to her, trying to get through the scattering of people distracted from their baseball reverie, their phones, their conversations. She writhed around with frustration in our hold as her incredibly loud bursts of screaming echoed through the stadium. Amazing how well that stadium echoes. Good for Madonna on concert night, bad for us.

Small crowds turned, looked, stared. A gaggle of twenty-something girls actually looked up from their phones. All to see what sounded like a horrible kidnapping gone wrong. What they saw, instead, was a gawky, awkward, stumbling sobbing teenager pulling away from her mortified parents’ hold. The security guard directed us kindly but firmly to the elevator and we found ourselves with an accompanying staff member, obviously not trained in dealing with this kind of situation but clearly well trained in intense unfriendly staring.

By the time Georgia left the Dome, she was happy again. Like a massive Georgia switch had been pulled, she was looking up at the CN Tower and chatting away. I felt what I can only describe as vaguely shell-shocked, and slightly numb. As a mother, I felt clumsy and inept. As a bystander, I felt like I had witnessed some awful secret, something I couldn’t unknow.

The last six months and these occasional but somewhat more frequent behaviours have involved a kind of stress I haven’t been able to articulate to anyone accurately.

Georgia has changed in the last six months. Not all the time, and not every day. And in many ways, she has changed in such positive ways. She remains her easy quick-to-smile self. Her singing out loud so earnestly self. Her sushi-enjoying, pizza-inhaling and life loving happy self. But her negative emotional reactions to the tiniest things have increased markedly in both intensity and frequency. Every little thing, it seems – on some days – sets her off.

And no, it isn’t just puberty – although I know that adolescence and autism can be a mean mix. When we first mentioned this to her doctor, she did say, “Well it’s part of being a teenager – it’s quite normal..”. The other kind of so-called comforting phrase – the frequently heard, “Oh, don’t worry, it’s just a phase” expression scares me far more than it reassures me. It suggests a kind of interminable state of being and an almost outright denial of the Groundhog Day kind of existence these behaviours, not addressed, can pull you into. It also suggests we can just ignore these behaviours until they pass, like a spat of bad weather. Lots of smart and intuitive people have told me that they can’t believe that she would behave in the ways I’ve described. “Oh no, not our Georgia!” Over the last six months, her teacher, her tutor and her babysitter have now, for the first time, witnessed and experienced this new behaviour. In honestly, I’ve felt a perverse sense of giddy relief at their incredulous recounting of the behaviours to me.

“See?” I wanted to say, “See?”

I think that much of it has to do with choice. Choice is, a wise person told me, pretty scary for some kids with autism. It’s so incredibly counterintuitive to think about that within the whole wanting-to-be-a-good-parent-thing though.


As our kids get older, we want them to choose, to have preferences, to have things that bring pleasure and are rewarding. And then, as a parent, we get to do that wonderful thing where we can provide something to our child that we know she’ll love. That is one of the privileges of parenting: to see inside this lovely little person a bit more than the rest of the world, and know what makes her tick. And most of all, know what dinner you can make after she’s had a long day that will make her happy. Know what her favourite band is and surprise her with tickets. Take her to the ball game on a Saturday afternoon and buy her a t-shirt. Make sure her favourite cookies are in the cupboard.

Choices, however, can be a source of anxiety. And consequences of choices are way harder to sort out. I mean, I still haven’t quite come to terms with the whole “Nancy, your choices result in consequences” concept in my own life (that’s a whole other kind of blog topic), so for Georgia it must be so much tougher.

It takes all of my strength to ask humbly for help – and the wonderfully frustrating part of it is that, most people don’t really believe me when I ask for help. “Oh no, you’re such a good mother! It will all be fine!” And then I retreat, smile, mumble and hit autopilot as many parents do, I suspect. And worrying secretly – or not so secretly – that I have no idea what to do as a parent right now, that I’m barely keeping it together and that I do not have the luxury of a few years to just take time to figure it all out.

We finally told Georgia’s doctor that we do need help. I drafted an email in three minutes, didn’t bother to reread it and I just hit send. We’re two PhDs in our house, one a health care professional, and we can search the literature for autism, aggression and adolescence but we have no idea how to cope with this vast rumbling loud unhappiness driven at us from this person we love so much.

My pithy but pointed email to her doctor, who has become a friend of sorts, wasn’t just a whiny complaint about my inability to get her dressed without a fight. It was not a casual request for a brochure or some journal articles. It was a hope we don’t start each day in tears. That every other night doesn’t end with anger and frustration – and that there might be a way for us to learn to let her make just a few choices and cope with the consequences of those choices in a way that we can all live with. It was an expression of a deeply held worry that we are going down a road that leads us to a place we don’t want to be. She answered almost immediately, didn’t tell me “it’s just hormones!” and gave us a referral to a behaviour and communication therapist who we’ll try out and see what happens. And offered to see us the same day, if it would help.

Tonight, on a hot muggy post-rain evening, Georgia came downstairs wearing two winter-weight hoodies over two t-shirts and carrying two more hoodies in her arms, while wearing a goalie helmet and  a toy NASA space helmet firmly on her right leg (yes, on her leg). I ignored all of this – even though one hoodie was still drip-drying on me from the wash as she walked by. I simply rolled my eyes to myself a little and smiled at her calmly. In spite of it all, I kind of liked the whole outfit. She had changed into her filthy flowered tights and stopped by my chair – surprise! – to make fluttery fish lips to kiss me on the cheek as she walked by.


Oh, she still likes me!

Today was a good day. A very good day. I’ll take them as they come – soaking wet hoodies, goalie helmets and all – thank you very much.

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Reinvention and watching the grass grow


Defined as changing something so much that it appears to be entirely new.

I’ve been thinking about reinvention lately in a number of ways. I always think of it in the late winter when the Toronto grey and dirty snow starts to melt, revealing grass and sleeping gardens underneath. The world reinvents itself each year, and each year we watch this with relief and a certain degree of awe. There hasn’t been a single year, in the 40-something years I’ve been around, that I haven’t stopped to marvel at a green bud pushing through dirt, mud and melted snow. And yet, it’s not that the world around us is doing anything completely new each spring. It’s doing that same wonderful thing it did the year before, and the year before that. The same bulbs you planted four years ago in that corner of your garden are right now, hopefully, working away to push up through the cold ground colourful tulips and daffodils, a new flower every year. The grass, as it does, will change from brown and muddy and as dead-looking as we might imagine – to being green and lush and full of dandelions, as it too does every year.

People like to talk about reinventing themselves. I’m not sure at all how you do that, and I’ve often wished lately that I could just figure it out already. I’m at a point in my life at which I imagine that many other people at similar points might also be thinking about how to reinvent themselves, how to find new meaning in old habits, and find something fresh, crisp and beautiful from within a kind of placeholder of fatigue and skepticism. Sounds probably way worse than it actually is. But I look around at many of my friends and colleagues with a rich variety of successes and challenges, personal sorrows and joys, and hidden wishes for themselves not yet realized. Add to this the inevitable age-related realization of the limited time we have in life to make things happen and a tiny tinge of urgency colours the entire picture. Find true happiness? Figure out what really makes me happy? Reinvent myself? Must get moving on that.

I do feel a kind of nagging desire to think about reinventing myself but I’m not sure what that means unless it’s a grand gesture. I’ve read about those who have “given it all up” and move to the beach and teach yoga. Enviable, but not at all realistic for me. So what does it look like then to reinvent myself? Is it enough to go to yoga more often, visit the beach when I can and just work to try to think differently about my day-to-day world? Is it enough to look back and see myself so changed over time and take comfort in knowing that this will continue and that my evolution is not yet complete – and that more change and growth, while incremental, is wonderfully inevitable?

Can I still think I’m reinventing myself without changing what I do on a day-to-day basis? This is the question – and believe me, life with Georgia means that much of what I do on a daily basis is almost exactly the same. Does reinvention require that one necessarily makes a grand gesture of transformation, or can the little changes actually suffice? Can that possibly be enough?

Out of these questions I’ve also been wondering about whether or not reinvention is also part of Georgia’s trajectory. Part of the reality of Georgia is that much of what she does and what she learns is repetitive and needs to be. The uniquely wonderfully and yet incredibly frustrating aspect is that she also thrives on repetition. With Georgia, growth and change are incrementally incremental – but astounding when realized.

balloons old

She’s been learning, since about age 5, to dress herself. This has not been a small task. We’ve enlisted, over the years, various occupational therapists, teachers, personal support workers, and family members to help make this a reality. Ten years later, she’s still learning, sometimes getting stuck, and often not able to figure out how to deal with the unforeseen, unanticipated challenges that come with getting dressed – challenges that you and I probably don’t even notice in any kind of appreciable way. Sweaty feet are so much harder to put in socks. A double zipper (almost always famously badly made) may hold up a process of getting dressed by hours. Jean buttons result in much frustration to this day. (On that note I just want to beg the quality control people at the jeans factory to please begin to triple check that the button holes actually fit the buttons perfectly, which will buy me an additional good ten minutes of free time every morning). An arm thrust through the wrong hole of a tank top being pulled on over one’s head can be a point from which there is no turning back. Georgia has almost learned about how to pull an inside-out sleeve out of a hoodie before putting it on but can’t even begin to put her watch on by herself.

I admit that I now do find myself feeling weary, each and every morning, helping to coax socks over too-sweaty feet, adjusting the misplaced waistband of underwear, persuading the jean button to get through the buttonhole, and fixing the watch on at the exact correct tightness. All with the kind of encouragement and explanations that, well, do get tired over time. One can only explain how a jean button works in a positive, upbeat way so many times over ten years before you start to feel a little lost for words. I can say that I now experience my wish for Georgia to be independent in dressing as almost a deep physical yearning, or one of those genie in a bottle “you can have only one wish in the entire world and this is it” desires.

But I must force myself to rise just a bit above my own weariness to remember the marked differences between five-year-old Georgia getting dressed and fifteen-year-old Georgia getting dressed.

Getting five-year-old Georgia dressed was something I did to her rather than did with her, as I do now. The ability to choose clothes was a pretty abstract thing to be honest – so while the choices were offered and encouraged, more often than not, I chose what she wore, every day. Putting jeans on five-year-old Georgia required me to actually straighten her legs and point her feet to allow the jeans to be pulled on. I lifted her arms to put them in a t-shirt and zipped up all the zippers each day. Making the little adjustments in our clothes that many of us typically make in an absentminded way as we walk from the bedroom to the kitchen for breakfast was an actual and conscious step in the process. Back then, there wasn’t much back-and-forth conversation. There was plenty of idle chatting on my part – a constantly one-sided cheery and educational dialogue – naming pieces of clothing and body parts, excitedly cheering for an arm raised in connection with a t-shirt being put on.

g shirt old

Getting fifteen-year-old Georgia dressed involves letting her choose between “retro” music t-shirts in one pile (She is the only 15-year-old I know with twelve Bob Marley shirts), Blue Jays t-shirts in another pile and the good old miscellaneous pile (there’s a bit of Mickey Mouse themed t-shirts here, a few minions and some cool animal graphics). While she still needs help getting the jeans on, she mostly has the motor planning moves down pat and can (with prompting!) point her toes and shove her feet through the leg of the pants. By the time the jeans are on and we’re at the button, well, she’s usually forgotten about that step and needs to be reminded. Socks are still a scourge – with the often too-tight cuffs and her sweaty feet, she needs help. Between my sore back and her difficulty with raising a leg up, you can typically find us at about 7:45 am in the bathroom, with her sitting on the toilet seat, one foot outstretched in front of her (while she distractedly gazes out the window saying good morning to the CN Tower) and me sitting on the floor, half dressed and wet hair, coaxing a stubborn sock on a sweaty foot. T-shirts are put on, mostly independently, but the “arm in the wrong hole” phenomenon remains a dangerous and ever-present possibility. She still needs to be reminded, every day, that once a t-shirt is put on over your head, there’s still work to do in pulling it down to cover your torso. Regular zippers are triple easy, but double zippers still make us grumpy. But through it all, we talk. We do tend to talk about the exact same kinds of things every morning, but we talk. We talk about the day ahead, about how hard it is to get out of bed in the morning, about the bus driver, about Friday night sushi, about Matt Galloway, about Rob Ford (truly, yes, just ask her), about the Ossington bus, about the weather. Mixed in our conversations are plenty of verbal prompts to keep her on task (“okay, put the other leg in now!”) and to remind her of the things you probably stopped consciously thinking about when you were able to dress yourself at age 5.

When I think about Georgia, day-to-day, she is less about reinvention, I think, and more like that lovely green grass waiting to grow under the tired snow in your yard. This may be part of the answer to my questions about reinvention – that the grand transformations and the teeny tiny small changes are far less different than I actually think. You can water and weed your lawn, then sit in your yard in your lounge chair with a glass of something well-deserved and cold in your hand, and make a very pleasant task for yourself of watching the blades of grass grow – for hours – without seeing any change. Yet, one morning soon after, you’ll pour yourself a coffee, take a sip as you casually step into your yard to smell the morning air and you’ll stop short – awestruck – at a yard full of grass so full and so tall you can’t imagine it was the same yard you saw, why, just a few days ago. Wonderfully lush and tall and green, it feels at once complete and realized and yet also now in need of plenty more cutting and weeding and caring for.

I sit and watch Georgia every day, with a kind of weary watchfulness and I experience daily the weight of the many tasks not yet learned, the reminders of how far she has to go, the million more times that every skill need to be practiced and the sameness of the tasks I have had over fifteen years and for many years to come as far as I can see, of teaching, guiding, and repeating. Yet there are those other moments when I absentmindedly stumble upon her as she is, all seemingly complete and realized in her own way – carving out her own little piece of independence, singing the lyrics to Hey Jude perfectly in tune, handing her transfer to the bus driver with a confident flourish, forgetting to wave good-bye to me as she heads to her first semi-formal, doing those (exact) same wonderful things she does year after year or just putting her arm through the right holes in the t-shirt – and I find myself awestruck.


Empty spaces

I’ve been thinking about loss lately.

In November, my dad – Georgia’s “papa” – died.

It was, for the most part, unexpected. An ordinary set of moments on a Sunday afternoon turned upside down. One moment he was chuckling on the phone and the next moment on the floor, with the life simply gone out of him. He had played in his band in the morning, had lunch and was settling into an afternoon watching a football game. He came upstairs to get a snack and answered the phone while my mom peeled potatoes at the sink, for dinner.

Since that day just about seven weeks ago now, well, a lot has happened in the world just adjacent to me and in the world around all of us. I’ve had to begin a process to make serious decisions about my own career. Two colleagues’ parents died within days of my dad. Chris’ lovely grandmother – and the only great grandmother Georgia ever knew – died just a few days ago. A friend lost her daughter in a tragic highway accident. Another friend had surgery for breast cancer. A plane crashed in the Java Sea, twelve people were killed by gunmen in Paris, a ferry fire killed ten in the Adriatic Sea. Children in developing countries died of malaria, of meningitis, of diarrheal illnesses, of starvation. A species of owl was discovered to have gone extinct.

I think about any window of seven weeks in anyone’s life. I wonder about the losses just in these seven weeks and the toll that losses take on all of us. I recognize that, in this seven week window, many others have sustained much more difficult losses than I have – and I acknowledge that explicitly. For me, losing my dad has felt like an empty space was created – or was opened up – and these other things around me have compounded the feeling of loss, the feeling of empty spaces.

And spaces, well, they make us want to fill them up.

I’ve come to realize that we spend a lot of time in our lives filling up spaces, that it is a human drive to do so. We fill up silences with chatter. We fill days that are empty (I’m still waiting for one of these actually) with endless tasks and odd jobs to “keep ourselves busy”. We turn the radio up extra loud when we’re home alone to fill up the emptiness in a house. We seek to yang our yin at every turn. Our quietest walks are filled with earbud-delivered music. We fill up our time on a streetcar sending texts. An empty fridge or empty growling stomach must be filled with food. The end of a relationship finds many of us filling the time we used to spend as a couple with new hobbies (how many of us have those half knitted projects in a bottom drawer?), new plans, trips, hot yoga classes – we label as our “fantastic new routine!” or our “finally I can do this for ME with all this spare time!” activities. We end something and seek a new beginning to fill up the space created.

Life really is, among all its complexities, a series of losses, of spaces created and then filled. As we get older and inevitably accrue losses, we carry around those empty spaces. For empty things, they certainly weigh us down. Many people have said to me the memories of my dad will make up for the loss – and fill the emptiness. I have lots of memories of my dad. Not all are fabulous – and some are of us butting heads over decisions I’d made or over worries he had. But some of the best ones are those of him with Georgia. He was his absolute best with her.

georgia konked out

Georgia was “papa’s girl”. He – and my mom – were always the first to call after any even very minor event in Georgia’s life to ask me how it went. He never hesitated to take her somewhere by himself – and she loved going in papa’s car and listening to loud brass band music. She also loved hearing him play in the band – and to this day, if there is a band on television or in a movie – she always asks if it’s “Papa’s Band”.

She has played her brass band CDs until they are worn. We often listen to her puttering around in the basement only to then hear brass band music at a fairly generous volume accompanied by some impromptu marching wearing a uniform made up of a tea towel, a pair of pink Dollar Store mittens and a Blue Jays hat. The two of them often went to Timmy’s together for coffee and Timbits. They went for walks together, shared the love of a good baseball hat, sat on park benches and chatted, vacationed together and most recently, they loved sitting on the couch in the basement on a Sunday afternoon watching football (for Georgia, watching grown men fall down) and working hard to out-snack each other. Smoked salmon, shrimp cocktail and cashews were their competitive snack foods and I still am not sure who could eat the most, to this day. Suffice it to say that I never carried up any leftovers (or crumbs for that matter) on any of the plates I cleaned up in the basement. They hung out the wind chimes in the trees in my parents’ garden in the spring and put them away each winter, together. He teased her. He smiled at the same joke she said thousands of times over. Even up until he last time he saw her, if he asked her to “come see papa” she’d come over and sidle up to him.

My dad wasn’t always one to wear rose-coloured glasses – he often focused on the negative or worried about all the awful possibilities rather then focus on enjoying the positives. But not when it came to Georgia. He always found something positive in her progress, even in the things that I framed negatively. When I’d tell him how frustrated I was with her acting out on a particular day, he’d focus on how great it was that she was becoming more independent and developing her own opinions and views. When I’d tell her that she had refused to take part in an activity at school, he’d say that at least she knew her own mind. I’d sigh and roll my eyes, but it stuck with me.

Do these memories fill up the empty space I’m feeling? Not quite. It’s kind of a square peg/round hole problem. The memories I have of him fill a space, for sure, but it’s a more abstract, ethereal “blue sky” kind of space. What the memories of him don’t fill is the day-to-day empty space that I feel when there are no voice messages on my phone from him “for Georgia’s ears only” or ones telling me about an article he read in the Consumer’s Report about cars, or the hundreds of other little things you get used to someone doing when you’ve known them for your entire lifetime. I suspect that for my mom, who was married to my dad for almost 60 years, this day-to-day space is probably the most challenging to fill. I wonder about this for Georgia, whose life, as she knows it, has always involved her “papa”. I imagine she feels the empty space that has been created by his loss as I do. When she’s at my mom’s house now, she has taken to going down to my dad’s office, finding his cane, keeping it with her for the visit and then quietly returning it to its place when she leaves. If her papa can’t be in the place he should, well, his cane will be.

On the day my dad died, after the coroner left, we waited for the funeral home attendants to come and take my dad off of the kitchen floor where he had been for many hours. When they arrived, my brothers and I watched from the hallway as they gently and carefully tended to the tasks they had to do before moving him. One of the attendants tried to take off his watch while I watched. She fiddled with the clasp, gently, silently, almost beseechingly, moving his wrist about softly and with tiny movements. There were two IV lines still in his arm, which had been cut and tied carefully, with no further need for fluids or medications. She tried to work around them and not disturb anything. In the stillness and the earnestness of the quiet task, I resisted the urge to bend down and reach across him to help her. Finally the clasp gave way and she cautiously moved the watch over his hand and then closed her hand around it. Looking up at me, she reached out gently with the watch and I leaned down to take it from her. It felt like the most natural thing – on a day of nothing feeling natural – to fasten that watch on my wrist with a simple movement. I slipped it on, clasped it firmly in place beside my own and put my hand in my pocket. It filled a weighty gnawing space at that moment, the space that had made me want to lean down next to him and touch his arm, and hold his hand.

I’m still wearing my dad’s watch today. It’s heavy. I took my own watch off – it’s now resting on my bedside table, perhaps for a long time – while I wear his. I often find myself playing with it during my day, taking it off, putting it back on. Polishing the face with my fingers absentmindedly. Thinking about him. Laying it on my desk while I type. It’s too big, and hangs loosely on my wrist. I like the feel of it when I walk and it falls down to rest on my wrist as my arm sways, reminding me with its weight and size, that it’s there. It slides down my arm when I’m cooking and slides back up my arm towards my elbow when I rest my chin on my palm. It moves with a purposeful kind of rhythm, up and down my arm, working to fill up that space of thinking about him. Like Georgia with his cane, his watch helps me to normalize, even just a little, the world without him.

A few people have suggested I get his watch sized to fit. A very sensible idea, that! I would love if we could fill up every empty space created in our lives – and truly change how things have made us feel – with a simple adjustment, a visit to a watchmaker, a resizing.

But I won’t get the watch sized to fit – not because it won’t change anything but because it will in fact change something. To do that would mean filling up that empty space. That very space between the watchband that fit my father’s wrist perfectly and my own smaller arm is exactly what I have left of him right now. That empty space, held close to me, reminds me in a palpable way of what, in fact, is missing.

I’ve asked my mom to not give my dad’s cane away to a charity but to keep it, resting against the wall in his office. Like the too-big watch on my arm at my side, I think that – for Georgia – having that cane on his chair with her helps, in a tiny but tangible way, to fill the empty space where he is no longer beside her.

Georgia happy grandpa

It’s hard to love the Wiggles

Early this morning the Wiggles were interviewed on CBC Radio about their current North American tour. Well not all the Wiggles – just the Yellow Wiggle and Purple Wiggle.

It was pretty interesting to be lying in bed listening to the Wiggles talk about their audience – “the little ones, up to about 5” and now “occasionally we see a few older ones coming back – you know, around 7 or 8 years old”.

Dear Wiggles, you should know that your biggest fan is, well, 15. And she shows no signs of growing out of you anytime soon. 

The Wiggles do acknowledge – and one Wiggle spoke briefly to this in the interview – that their fan base is fairly diverse: they are loved in many different countries and languages, and by kids who have autism, or who have a variety of disabilities. The Yellow Wiggle said today that they have never invited a child up onto the stage at a concert (believe me, this would be crazy) as it would be unfair to bring one and not offer that opportunity to another child. They also state that they purposefully always open their concerts with “Hello everybody!” (I can attest to that) rather than “Hello boys and girls!” as a very simple way of being as inclusive as possible. But I’m really not sure if they realize that there may well be a very unique group of fans out there – kids with developmental disabilities who identify early with the Wiggles – and who never stop loving them.

And I am quite sure that they do not know about Georgia – their uber-fan, their super-groupie, their wunderkid devotee, their crooning connoisseur, their faithful zealot, the disciple of disciples who makes the fanatics look like they’re not trying very hard. She loves the Wiggles the way most of us love breathing if we really think about it. She’s taken the Wiggles and permeated them into far too many daily experiences – places in the day you just wouldn’t expect to find four singers in block coloured long sleeved t-shirts who sing about a chicken who chickens down the road (as chickens very likely do, but still).

For those of you who know the Wiggles, I know you are now hearing “Here comes the chicken, here comes the chicken, chicken down the road”, aren’t you? I’m smiling as I apologize. Share a little of my pain.

Let me tell you briefly about our nearly 15-year histoire d’amour avec les Wiggles. I do suggest that you may not be ready for reading about the intensity of love that extends outwards from our house towards four Australian performers, a dancing dinosaur, a large dog, a pirate and an octopus who wears glasses. Even through the changing Wiggles – you know that Anthony was gone for a while, and then Sam became head Wiggle, Murray’s gone (too bad, that) and now there’s a girl Wiggle too – the very essence of the Wiggles is what Georgia loves.

It all started with a night out with a couple of overtired and irreverent moms, complaining over glasses of chardonnay. Mentioned in an off-handed and completely inappropriate way were four good looking Australian musicians who perform kids’ music. Knowing looks and cheeky laughter ensued. I admit, that’s all I needed to be intrigued. You must remember that I was being subjected at that time to many hours of Caillou (a whiny bald kid), Teletubbies (four alien beings who spill pink pudding and live on a spaceship with a vacuum cleaner), and Boobahs (four somewhat creepy brightly coloured gassy-sounding bag-like creatures oh, impossible to explain) and found myself unreasonably thrilled with the possibility of an episode of Clifford The Big Red Dog or Yo Gabba Gabba. But 4 cute Australian guys singing kids’ songs? Bring it on.

14 years later…

We have attended three Wiggles concerts. We have brought roses every time for the dinosaur – who likes them. We would have attended MANY more, were it not for the fact that Georgia outgrew the entire audience about 8 years ago. At the last Wiggles concert we went to, she was about 9 or 10 maybe, and bigger already than any other kid that I could see in the place. However, she screamed the loudest, cheered with the most enthusiasm (she was heartbreakingly enthusiastic), and begged quietly for the Wiggles bling intended for a target buyer age of about 3. Meanwhile the five year olds sitting next to us were giving her the “What the heck is she doing here?” side-eye the whole time. Mothers of toddlers gave pirate-hat wearing Georgia that utterly predictable, “Oh my that’s interesting” look. I longed for the Wiggles to (really) see Georgia, to find her, to realize that – there – in the midst of yet just another big stadium concert, was their uber-groupie, their most faithful fan. To take her away from all of that, saving her from the stares of the mothers and the toddlers and let her just bask in the glory of the Wiggles.

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Georgia at Wiggle Bay, 2008.

We have Wiggles books, programs, hats, posters, CDs, DVDs and a shiny wand thing that spins around with feathers on it. We have replaced those books, hats, programs, CDs, DVDs, and shiny things as they’ve worn out, one by one, from overuse. Georgia’s YouTube search and surfing history, when she’s on her computer, shows a daily intake of, on average, oh about 20 Wiggles videos and concerts – some in Mandarin and Spanish. When the little reflective solar lights on her wall twinkle onto the ceiling at bedtime, she sometimes whispers to me with a satisfied sigh, “Oh, it’s just like when the Wiggles sing Twinkle Twinkle!”

At Georgia’s first Wiggles concert years ago, she decided that the Wiggles actually live at the Skydome in Toronto. Now, many years later, that building – called the Dome to some, the Rogers Centre to others – is simply known as “Wiggle Bay” in our house. When we go see the Jays play, we’re going to Wiggle Bay. Two of Georgia’s favourite things in the world are the CN Tower and Wiggle Bay, luckily located right up against each other. A source of architectural wonderment for her. This summer when we began the 23-hour drive home from South Carolina, we weren’t on the road for more than 20 minutes when Georgia began her enthusiastic cheer that she’d soon see Wiggle Bay out the window: “We’re on our way to Wiggle Bay!” This fabulous happiness lasted through six states and one province. Stuck on the Rainbow Bridge, she swore she could see the CN Tower and Wiggle Bay. “There it is!! There it is!!” she yelled loudly out the car window. Occupants in the long line of cars sitting in the heat turned their head to see. Twenty-two and a half hours later, she finally saw it – her own personal mecca of song and joy. We’re not sure but she seemed happier to see that than just about anything else.

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The uber-fan cheers her favourite architecture.

Georgia knows almost every Wiggle song, and one by one they are seamlessly threaded into her listening repertoire. You’ll hear her singing along to her iPod – Elton John, Bob Marley, Wiggles, the Beatles, Wiggles, Madonna, Wiggles. I admit, as kids songs go, they’re very catchy but the degree to which they have permeated my life – and my head – is unprecedented. I have had “Fruit Salad” stuck in my head for weeks on end over the past 14 years. “Do The Monkey” catches me, every time. Their rockabillyesque version of “Hot Potato” can come into my head most unexpectedly. If I just almost think about it, I can hear the singing voice in their tender version of “Twinkle Twinkle” (sung by Greg, I’ve confirmed on Wigglepedia).


Multitasking with Wiggles on the playlist.

It’s tough, I suspect, being in high school and liking the Wiggles. You can’t wear a band t-shirt out with friends and you don’t want to come to school Monday morning talking about a totally amazing concert you went to on the weekend with a band who arrives on stage in the Big Red Car to the passionate cheers of many toddlers. She’s not quite old enough to be enjoying it in a truly retro way – the way I listen to pretty bad one-hit-wonders from the 80s and claim it’s something about reliving an era (maybe the older she gets, I can claim she’s attending the Wiggles concert totally ironically…). The fact is, it’s a bit difficult to just enjoy the Wiggles the way you should when you’re 15. For Georgia though, to give her credit, this is not a barrier. She is the Wiggles’ most tenacious fan. For that reason, I’ve debated with myself about taking her to a Wiggles concert. I know she’d love it. I’ve tried to ‘wean’ her off of the Wiggles as I’ve always felt it would be more and more difficult to take her to concerts, the older she gets. As I see her fan fervour not diminishing in the least, I am more and more tempted to simply just take her to a concert and say to heck with those who might judge.

But I do find it tough to sit among a bunch of overly curious parents and tots, wondering what’s up with the uber-happy teenager in a pirate hat. In a modern world so bent on ensuring that we respect diversity in so many different ways (as we well should), it is still the case that kids like Georgia – so often doing or enjoying something not at all age-appropriate or exhibiting childish reactions that don’t match their physical selves – get stared at, pointed at, laughed at. And not just by other kids, but often by their parents. We spend a great deal of time today trying to make sure that kids don’t get bullied, teased or ridiculed about all the bigger, complicated and more important issues in the schoolyard (and I’m all for that!) but in other very ordinary, smaller ways and in situations that don’t seem as critical (e.g., a Wiggles concert), we often forget that these are also opportunities to practice what we preach in terms of inclusivity. I’ve experienced this at movies aimed at little kids (that she of course loves and ends up sobbing in the theatre when they’re over), and other things she enjoys out there in the world that aren’t geared to teenagers, but rather to toddlers. Take her to a toy store to buy a present for someone, she’ll gravitate with great zeal towards the baby toys. Her favourite book to read at bedtime is still a Baby Einstein board book, recommended “for babies up to 2 years”.

The academic in me fights a bit against all of this by trying to move her towards more age-appropriate interests, and working to introduce her to other kinds of books to read at bedtime. We’ve begun to read the Harry Potter series and some Laura Ingalls Wilder, but if asked, Georgia will request to read Frog and Toad every time. And this is when the mom in me says, “whatever makes you happy.” Frog and Toad wins out. Harry Potter will always be there – and no doubt we’ll have many more nights of reading. I’ll be patient.

The great thing is she’s grown up in so many other ways, but there is so much of her that remains, well, a preschooler, to be honest. I know that other parents of kids with developmental disabilities experience this same thing and I take some small wonderful comfort in that. She copes well with having a menstrual period, can ride a bike on her own, loves reggae, longs for independence and wants to take the TTC by herself. This same grown-up kid truly loves and prefers videos of music for newborns, toddler toys, the merry-go-round and, yes, the Wiggles. In fact, her favourite cure for menstrual cramps is to lie on the couch with two Advils and a Wiggles video. Now there’s a completely unrealized marketing opportunity…!

The Wiggles are headed out of town after today, to return in a month to venues close to Toronto. I’m going to buy tickets and we’re going to have a great time. This is my kid, she’s 15 and she loves the Wiggles. The rest of the world can just get over it.


Making Plans for Georgia

This weekend my Facebook newsfeed has been awash with friends who are sending their kids off to university. For months now, I’ve been enjoying watching many of my friends and their kids engage in the planning for higher education exercise: decision-making about what university to attend which involves going on tours, weighing the pros and cons, thinking about past wishes and focusing on future plans. This weekend, these plans culminated in a series of compellingly lovely smartphone photos posted on timelines: of boxes of stuff sitting on patios or filling up the backs of cars, of good-byes and freshly arranged residence rooms, of posed family photos outside historical buildings and library entrances. Status updates about the worthwhile years of saving, the worries and anticipated phone calls, about driving away and arriving home to an emptier house. The bittersweet pride and joy mixed with that inevitable wave of sad-happy that these kinds of landmarks in life wash across us. The coming to fruition of plans.

I have already accustomed myself (mostly) to the idea that I won’t be doing that for Georgia, in any way, shape or form. I’ve written a lot in this column about trajectory, and how the trajectory of Georgia’s life will take on a much different form that what I might have imagined for my child, before I met her. I’m still very wistful about it, I admit, but I am realistic. The plans I might get to make for Georgia will be much different than a university education, although they will involve similar kinds of fundamental values and driving forces: wanting my child to be happy, accomplished in her own way, engaged in the world around her and actively participating in her own life and choices.


Georgia getting her grade 8 diploma, June 2013.

But it’s more than that. It’s about making plans. It’s about making a plan based on all kinds of things that you get to nurture as it develops, ponder on late at night when you can’t sleep and fantasize about when you’re feeling giddy. There’s something I want to say to those parents – many of them my friends – and it isn’t, “Remember how fortunate you are to have a child who can head off to university”. No, no. It’s not that. It’s not that at all. I realize now that it’s actually something more like, “Wow, remember how fortunate you are to be able to make that plan.”

The thing about planning is – it is a true luxury, a privilege of the very fortunate.

A plan followed through and seen to fruition? I’d call that an absolutely amazing extravagance.

I suspect that it is rare that we actually take a moment to stop and contemplate the very privilege of being able to make plans. The idea that we can actually conceptualize something we want to happen, happening. The idea that something we want so badly for our child will actually come true. Planning is the modern-day version of luxury. A Chanel bag as luxury? No, not so much, really. You can buy a knock off on Canal Street in New York City for a few hundred dollars and walk around thinking your arm candy says “luxury”. But many of us know that isn’t luxury. I have no idea how to tell a knock-off from the real thing in terms of Chanel bags, but I do know the absolute luxury of being able to make a plan and have all the things one needs in life to make that plan a reality, a goal, an outcome.

I don’t feel sorry for myself because my kid very likely will never go to university. I do admit, I will miss the planning. Yet then I think of how many never have that great privilege to plan something so wonderful as helping a child go to university for reasons far different from mine. Or those for whom a myriad of reasons – poverty, lack of access, lack of knowledge, or constraints related to geography, culture, religion or belief systems – make it difficult or impossible to even engage in that kind of planning. And then there are those who plan, who take that risk to imagine something so great – and have it crushed in a few mere seconds.

This week I was on Queen at Bay and turned my head while on the phone, only to see a cab door open suddenly and a cyclist plow into it. She was thrown off of her bike and over the door – time seemed to stop as she flew through space for a few unreal seconds – landing a few feet away on the sidewalk, with a couple of frightening cracking sounds. One cracking sound was her arm hitting the pavement at an impossible angle – resulting in an obvious compound fracture with a visible bone and plenty of blood. The other crack was her non-helmeted head striking the concrete. The noise still haunts me just a little and I can far too easily recall it by simply closing my eyes and remembering that moment. As a nurse, a cyclist and a fellow human, the sound was seriously bad news. I stayed with her alongside a small crowd until the ambulance came and concluded that she very likely had a moderately serious head injury. She was clearly in shock and among other things she was repeating was the notion that her plans “were gone to s**t now”. She knew her arm was broken and the plans she had made “to go camping” for the weekend simply weren’t going to happen. I knew that, she knew that – even the security guard from The Bay who ran outside to help with a rather less-than-what-might-be-needed-but-well-intentioned first aid kit knew that. I also knew that she had some version of a head injury and that there may be other plans that she now cannot make happen. Of course, hunched over her on a busy downtown sidewalk at dinnertime with my skirt wrapped around my knees and my hand brushing her hair off her face (and that whole thing of not being a neurologist), I was not going to tell her anything remotely like that, but I knew that the chances of her fulfilling every single plan she had made to that day, had somehow changed, even maybe just a little. In a split second, in the mere careless opening of a cab door and a seemingly frivolous decision to not wear a bike helmet. Her plans, as she said, had “gone to s**t”.

For me, I’ve had a long time to adjust to the ‘change in plans’ that Georgia’s trajectory likely requires of me. But I haven’t had a head-cracking-on-concrete moment that has perhaps taken away chances of making plans in a split second. I actually think that if you have a child you take from birth (or thereabouts) to the point of driving them to a residence in a university with admission into a program of study, you’ve really done a wonderful thing – in the very act of it  – and in being able to actually engage in the luxury of making real plans.

While I write this column, I keep hearing lyrics in my head: lyrics of a song I grew up with (and yes, now I’m dating myself – feel free to do the math). In 1979 XTC released a song called “Making Plans for Nigel”. Geeky music websites many years after debated the meaning of the song: some saying that it was a subtly political statement about the Labour Party and the Conservatives and the need to keep workers quietly happy (there’s one reference to “British steel”), but interestingly many other commenters claimed that this song was about parents making plans for their child’s life. Still others say that the song seems to suggest that the parents are making plans for a child with some kind of limitation or disability.

The lyrics (I’ve included most of them below), if we decide to interpret the song this way, seem to suggest something to the effect that the “making plans” part of life is not as important, is insignificant or trivial and that the “making happy” part is truly noteworthy. I’ve thought about this. I agree in part, specifically with the latter part – yes, making Georgia happy is crucial – but I still posit that the privilege and luxury of being able making plans should never be taken for granted.


We’re only making plans for Nigel 
We only want what’s best for him
We’re only making plans for Nigel
Nigel just needs this helping hand

And if young Nigel says he’s happy 
He must be happy
He must be happy in his work
We’re only making plans for Nigel
Nigel’s whole future is as good as sealed

Nigel is not outspoken
But he likes to speak
And loves to be spoken to
Nigel is happy in his work
We’re only making plans for Nigel

Oh and yes for those of you who now have that song stuck in your head (and I can almost guarantee that you’re born before 1970), here’s a link to XTC on Top of the Pops: http://www.youtube.com/watch?v=gXNhL4J_S00.


Raising Georgia

Many people are curious about what it’s like to raise a kid with autism. One interesting result of this column is that many people are interested in what it’s like to raise Georgia. I realize that I focus here, often, on the part of raising Georgia that speaks to the challenges (and even sometimes the joys) of autism, but the focus is typically on that, rather than simply on Georgia, the person.

It’s not that I think of her autism as something quite separate from her, something that is just ‘a part’ of her or something that can be turned on or off. Rather, my ideas about her and autism are, to say the least, quite complicated and vary wildly with the situation, the day and very much the reactions of others in the world around us. I like to think of it using an analogy – for anyone who has agonized over a PowerPoint presentation, this will hopefully be clear. When I make a presentation, I often like to use more than one image on a slide, arranged not uniformly, in a patchwork-style, overlapping and building upon each other. Often, though, one image obscures a corner of another or overlaps and blocks an important feature on the image behind it. There’s this great feature in Powerpoint in which you can right-click to bring the image “to front” or place it behind another image. Essentially you decide what image you want on the top of the pile (clearly presiding over others) and what image you want to be behind the others, a bit obscured or with some elements blocked from view. This is how I think about Georgia and autism. Some days her autism seems to be ‘out front’ and commanding both energy and attention. Other days it’s ‘behind’ my image of her and I see Georgia, lighter somehow and unencumbered.

G collage

The many overlapping images of Georgia

But for today’s column, let me tell you a bit about Georgia the 15-year old and not Georgia the kid with autism. Two things are worth saying here. First, I don’t consider her autism as something inherently negative. She is who she is, and part of her charm and loveliness is her approach to the world and the way she moves through it. This is inevitably flavoured by her autism, directed by her developmental delay and from a practical perspective, driven by her physical limitations. So her ‘disabilities’ are something that truly make her who she is. Second, it’s tough to ‘take out the autism’ when I talk about Georgia – and that’s okay. But I have these moments when I realize, “Wow, she’s a pretty typical 15 year-old in some ways…” and thought I’d share a few of those here, along with the lessons I’ve learned (similar to what I assume many parents of 15 year olds learn) and a few insider tips.

1. She owns rules the basement (aka “The Teen Zone”). Like Daenerys Targaryen, Mother of Dragons, she guards the hallowed entrance to the basement with a skillful eye, lightning reflexes and an instantly terrifying growl lest you dare to set foot on the top stair, heading downwards. You could be bearing a silver tray of the finest foods for her and she’d outright reject you, banishing you to the upper floors of the house. Lesson: don’t enter the Teen Zone unless the Mother of Dragons summons you.

Insider tip: She will share the basement for exactly 30 minutes with three non-negotiable conditions: (1) Jeopardy is on the television; (2) You come bearing a snack that includes cheese and excludes apples; (3) You massage her neck, back or shoulders with medium firm pressure at her behest.

2. She likes Top 20 music. As a late 40-something academic, I’m somewhere between foolishly proud and outright mortified that I know the lyrics to every song performed in the last three years by Pitbull, Bruno Mars, Katy Perry, Kesha (“previously stylized as “Ke$ha, but no longer”…bet you didn’t know that, huh?), One Direction and so on. You get the picture. Lesson: Learn to like it.

Insider tip: Thankfully, she also loves Elton John, Bob Dylan, Marley, the Beatles, the Stones, Eric Clapton, various 80s musicians and is learning to love Chet Baker and Louis Armstrong. She’s happy with listening to radio playing the (sigh) “oldie” hits of the 70s and 80s and even likes audio books instead of a constant Top 20 drone. We’re currently working on appreciation of Steppenwolf and Elvis Costello.

3. She wants to wear what she wants to wear. Last summer, we visited Target on our way home from vacation and with her outright blasé attitude, she assisted us, while sighing with exhaustion, in buying her some (pretty fantastic) new clothes for school. Secretly chuffed, I was thrilled that the new trends included patterned jeans, funky dresses, and hippie-style tops. Uh huh. I was excited. So excited that I should have realized my impending doom. Day two of high school and Georgia comes home, declaring firmly (again, in true Daenerys Targaryen style) that she was only wearing black tights and t-shirts from then on. And I scoffed at this, dismissed it, with a tinkly laugh and a devil-may-care, “Sure, okay!”. The next morning however, Georgia opened her eyes, and before she moved a single muscle, locked me in her gaze, proclaiming “I am wearing black tights and a t-shirt”. I knew I had my work cut out for me, but gave up early in the game. Thank goodness for Old Navy online shopping. Three clicks later, I had four pairs of black tights being shipped (“rushed”) to the door and a selection of graphic t-shirts that we can both love (i.e., everything from neon giraffes wearing glasses to classic Joy Division).

In the last few years, we’ve gone through the same single-minded dressing obsessions of Georgia’s including: wearing only men’s suits and ties (“But mommy I HAVE to wear a suit to school!!”), dresses (short-lived but well enjoyed by yours truly), white shirts (short-lived because I can’t do laundry that quickly) and heavy fleece hoodies at the height of summer (“But I need a sweater, I’m so so so cold, mommy!”). If I’ve learned anything, it that it is better to pick your battles and let her be as independent as possible where she can. I’ve also learned that it could always be worse – let’s just say that black tights and cool t-shirts aren’t the scariest choices for dressing that adolescent girls these days are choosing. Lesson: Give the kid credit; she’s knows her own style (and she’s got an admittedly great sense of style).

Insider tip: She would, if not closely monitored, wear a Piggly Wiggly t-shirt and Blue Jays hat every single day of her life.


4. She eats in a way that reflects a creature made up of half yearling bear and half aging supermodel. Some days, I simply cannot provide her with enough food. She’ll demand a sandwich when walking in the door from school and midway through it, ask for dinner. She absolutely always accepts seconds when offered and demands additional helpings of salad and any warm carb on offer. When we order sushi, she can eat enough for at least two people. And then be very sad that it’s “all gone”. Other days, however, she’ll pick at the teeniest tiniest serving of something, declaring that she hates it and that she can’t possibly eat it. She’ll put her hand to her stomach, thrash about in her chair a bit, declare that she has some terrible illness and push her plate away, fanning the offensive food that dares to mock her. She’ll then roll her head around dramatically to rest it on the wall in sheer exhaustion, closing her eyes at the injustice of being told to eat food. Lesson: Ham. She can’t refuse ham.

Insider tip: Ummm. If you can’t get her to eat something, add ham. 

5. She multitasks music. She is happiest when on a road trip with her parents (in the backseat) listening to her iPod, with the car radio blaring music and her iPad in her lap with the DJ app in play. Each device is playing a different song (and one must always be “Hey Jude” apparently) and that is the way her everyday living mashup works.

Insider tip: For the roadtrip, add a bag of potato chips at her side, an open photo book beside her, highway construction that she can watch and a destination with a swimming pool, and she just might burst open with sheer bliss.

I don’t know much about 15 year-olds in a general sense, but I’ve felt the inevitable sense of frustration, and witnessed the tired smiles and sighs of other parents of 15 year-olds, that I know some of this is a shared experience. While I some days feel like our 15 year-old challenges are far different from most, I take some real comfort in the fact that like most parents, I’m constantly trying to readjust, find a balance between what Georgia wants and what she might need. I’m trying to keep her safe while letting her go a bit, choosing my battles (okay, okay, I’m perhaps more slow at learning that…), giving up the fights that are just silly and letting her be as autonomous as possible with the things that matter most to her. I’m also slowly realizing that the reason she’s so Mother of Dragons about so many things is because, well, she’s learned a lot of that from me. I can be fiercely unmoving and wildly overprotective with little latitude when it comes to Georgia. But I can change, and I can relinquish my too-firm position in many of the battles, knowing I’ll have to do this more and more. Case in point: I’m ordering four more pairs of black tights for back to school, one size bigger this year – and not a single dress.


What is life with Georgia like?

What is life with Georgia like?

People ask me this sometimes. At first glance, it seems like an innocuous question. It’s tough to answer though – particularly right now. I need a good metaphor, I realize.

People love metaphors. They love them because metaphors help us to understand something we perhaps haven’t experienced or can’t experience. Metaphors help us make sense of things that are foreign to us and they act as tools for us to explain ourselves to others. We use metaphors to get to the bottom of mysteries and to be creative and compelling in describing something to others. Sometimes metaphors are just every day ways of communicating. The nurse who asks the patient whether his chest pain feels “sharp as a knife” or “like an elephant sitting on your chest” is trying to help decide whether to offer the patient a sedative or move him into a cardiac care unit. The runner who “hits the wall” doesn’t need to say much more to those who are avidly listening to her retell the story of her first marathon.

We are at the beach, on our annual summer vacation. When I’m on vacation here, I tend to think about all things Georgia more. I have much more free time to reflect and ponder and, well, worry. I’m around strangers much of the time in the pool or at the beach and often need to explain her to others. I’m hyper-aware of the way she is watched by other often littler kids who are curious about the lovely, funny awkward person who acts younger than them but is bigger than they are, who dances on the beach with a complete lack of self-consciousness and who laughs uproariously and with abandon every time someone jumps in the pool. The other day a family of three small kids and a mom were in the pool with us, watching Georgia out of the corners of their eyes and smiling politely at me. Georgia, as always, was the one to break the ice, asking each of them their names over and over and then repeating the names over and over – “You’re Grace, Grace, Grace-y! Hey Grrrrrace!!” The youngest boy asked me quietly, “Does Georgia have some kind of a problem?” and I did my short, friendly well-rehearsed public service announcement type of response and asked him if any kids in his class have autism. No, he replied, but he knew a kid once with cerebral palsy. I smiled. The mother asked me how old Georgia was. When I told her 15, she looked at her, then back at me and said, “Well she’s very functional!” I smiled. I wondered if, while I wasn’t paying attention, the conversation had somehow turned from adolescents to appliances.


People are kind and accepting of Georgia, and in a shared pool, strangers are forced to engage with her in a way that may test their own sense of comfort or patience. I realize that and am grateful for their efforts and their kindness.

But I also get tired. Of explaining it. Of smiling. Of answering well-intentioned but completely out-in-left-field questions.

The best one this year came up in a casual conversation with a stranger dad at the pool about the occasional small alligator you find in the waterways here. His crazy hyper, unruly (“golly, they only sleep three hours a night!”) six-year-old boys were screaming about how much fun it would be to see an alligator and his next out-of-the-blue question to me was “So would you have to hold your daughter back from just wanting to get into the water with one?” Uh, no sir, nope, I would not. I chuckled to myself that rather than an explanation of autism, he might instead need a gentle re-introduction to his own kids (not from me) who I easily pictured hurtling down to the water to scoop up their new pet alligator (“Dad, we’re calling him Norman!!!”) about a million times faster than Georgia would even consider getting off her chair to peer with adolescent disinterest into the water from afar. That’s what Georgia is like.

What is life with Georgia like? This is what I’ve been pondering here, on vacation this year. People have asked me “what it’s like” to raise a child – and now a teenager – with autism. The first thing I’d say is that if raising a child with autism is like running a marathon, then raising a teenager with autism is like running an ultra-endurance Ironman – with no training – in extreme heat and humidity – and wearing high heels.

It’s not like ‘a bowl of cherries’. And it’s not like a ‘box of chocolates’, or else we’d all want some, obviously. The whole point of the ‘box of chocolates’ metaphor is that, as Forrest Gump’s mother says, “You never know what you’re gonna get”. Not so much with life with Georgia. Life with Georgia is more like a giant box of chocolates, each mostly exactly the same bite after bite and that is precisely the way she likes it. Change them up and risk a small but memorable teenage rebellion.

It’s not ‘two steps forward and one back’. It’s more like one step forward and two steps back, then a crooked skip forwards a bit followed by a dramatic trip on the crack in the sidewalk and some funky dance moves sideways.

Is it like a ‘wonderful journey’? Uh, well, I suspect no mother of an adolescent would describe the experience that way exactly. No, it’s not. It’s more like a just slightly too long and too rainy family car trip in an old station wagon with no AC. You know the kind. It’s a ton of work (mostly by mom) to just get out the driveway, and by day three, dad is chain smoking behind dark glasses while driving way too fast past gift shops and trading posts, and mom is furiously knitting and angrily snapping her gum. In the back seat, the kids have drawn an imaginary line down the middle of the back seat and anytime a sliver of leg, a jostled elbow or an unattended Barbie or GI Joe crosses the line, complete chaos ensues, only abated by a threatening growl thrust backwards from the driver. The tent is ripped and leaks every time it rains, the sleeping bags are damp, someone has thrown up at least once (both in the car and in the tent) and the dog in the very back has a bad case of gas and howls anytime anyone opens a window.

But there are other moments. The fresh, quiet dewy mornings spent sitting in a folding chair with coffee and tea and no plans other than to get to the bottom of the cup. Afternoons that stretch into early evenings spent diving off a dock into a sparkling lake. Wearing a bathing suit as clothing. The moment a too-burned marshmallow falls off the stick into the friendly campfire and everyone laughs. Pulling into the driveway with a sigh, and feeling like you’ve just had the best time ever.

One metaphor that keeps coming in my head is ‘banging my head against a wall’. Being Georgia’s mom sometimes, yes, makes me feel like I’m simply banging my head against a wall. I get the same kind of results when I try or I don’t try lately, and my normally good-natured optimism is being tested, almost daily. There are days when merely approaching Georgia causes her to proclaim, “I’m very unhappy with you!” I joke about it to my friends and family (in an attempt to minimize how difficult I find it) but her level of adolescent unhappiness is extremely difficult for me to manage. Or rather, my reaction to her level of adolescent unhappiness is difficult for me to manage. She doesn’t have enough insight into her own reactions and feelings for her to understand that “hey mommy has feelings too!” and the truth is that much of the time five minutes after she proclaims her abject unhappiness, she is dancing and singing a Bob Marley song and appears to be as happy (as they say) ‘as a clam’.


Banging one’s head against a wall isn’t exactly the right metaphor for what this is like. There is nothing positive about banging your head against a wall, no moments of satisfaction or happiness. Nothing other than that singular mostly negative experience, which can be strangely therapeutic in its blunt simplicity. That’s not life with Georgia, although it may well perfectly describe moments with Georgia.

So today I finally came up with a metaphor for life with Georgia. I came up with it while strolling along the beach, as I do most days while we are here on vacation.

Life with Georgia is like the ocean.

I love the ocean. I also fear it just a little and understand it far less than I’d like to.

Every day I’m here at the beach, I’m astounded at how the ocean is so consistently unvaried and almost exhausting in its sameness from year to year and day to day, while also being so very different in each passing minute or hour. At high tide, the ocean is all bravado and white caps – angry, threatening, strong. At low tide the landscape is dappled by gentle tidal pools where toddlers crouch beside and dabble fingers in the water that has been warmed by the sun. Depending on the moon, the wind, and the sky, the ocean changes colour, intensity, temperature. Some days, the ocean is clear, calm and blue and you can paddle in peacefully, in salty aqua stillness. On other days, it’s murky, frothy, dark green and tumultuous – hitting you from behind with an unexpected forceful crest as you wade out of its grasp. While beautiful and compelling, the ocean holds mysteries and potentials that are intriguing and frightening.

Like the ocean, life with Georgia is staggeringly repetitive and beautifully invariable, wave after inevitable wave breaking upon the shoreline. Predictable yet formidable. Tempting yet fearsome. At one moment, joyfully inviting and the next moment, tumultuous and forceful. It’s not to be trifled with: one hidden rip current below the calm surface and you’re caught up in it in an instant, flailing madly and trying to remember what you were told to do. It’s useless in a rip current to try to swim hard against it but if you do nothing, it will carry you far from where you want to be, beyond the breaking waves on the shoreline and out of sight of everyone else. You need to focus, realize you’re caught in a rip current, then stop panicking and find strength. Don’t try to fight the current, everyone says, swim parallel to the shore. Trying to swim directly against the flow of water will exhaust you. Take the life preserver if it is tossed to you and let yourself be pulled out of the current, usually just a mere few feet to one side.

I’m a good swimmer. I’ve become a better swimmer, as I’ve gotten older, spending more time at the ocean and becoming more athletic now than when I was younger. I sense that, as Georgia gets older and increasingly complicated, I’m going to be spending more and more time caught in those rip currents that underscore life with her and less and less time dabbling idly in placid tidal pools. I’ll just try to keep my head above water, swim parallel to the shore, and see where it takes us.