Whose Dream Should I be Living?

Posted on May 29, 2014 by Nancy Walton

I’ve been thinking a lot lately about modern messaging about ‘Living Your Dreams.’ If you’ve ever been on a social network, you’ve already seen the taglines that triggered this post: Give it all up. Get off the grid. Be more courageous. Travel now. Live authentically. Close your computer.

“You don’t have to be a millionaire to live in Hawaii, you just have to want it!” proclaims the host of the show Hawaii Life, in which frostbitten families pick up their lives and move to Hawaii to ‘live their dream.’ This is a relatively recent approach to fulfilling one’s dreams: If you want something – just go and get it. Don’t let things like money and family stand in your way. Dare to dream!

I want it – really, I want it. But I’ve found that hasn’t been enough yet. A Facebook friend posted a picture of some mutual friends recently, and noted that they were ‘brave’ enough to give up their jobs and house in downtown Toronto for a year to travel around the world. She challenged her Facebook friends to try to find that kind of ‘courage’ to do the same!

Many of these memes of people living their dream come with some version of this tagline: ‘I’m Living Proof That You Too Can Live Your Dream!’ So the question becomes: what stands in the way of the rest of us being courageous enough to live the dream? Well, as Georgia says: “Life happens.”

I’d love to be ‘brave’ enough to give up my house, my job and my extended family for a year to travel around the world. From a financial, personal and professional perspective, I’m amazed people do this. I would have about a year’s worth of stuff just to think about first, including how to best go about uprooting Georgia for the sake of my dream. I need my job – it’s a very good job – and I’d like to have it for a while. I need it so that Georgia can have the things she needs, and ensure she has support after I’m gone. I have a house – it’s a nice house – and Georgia likes coming home to it.

We have occupational therapists, tutors and respite caregivers who are part of the fabric of our lives, whom we’ve worked with on developing strong and wonderful connections, and who are now part of our extended family. The idea of taking Georgia away from those supports for a year simply isn’t realistic, and I’d worry about opportunity costs in terms of her development.

So I really don’t want to be told that I’m not ‘brave.’ It’s great if you can – and if you can, you should! – but please don’t make this about being not ‘courageous’ enough if you can’t.

I’d love to give up living eight months in the cold to live in Hawaii. I really would. Interestingly, the families who are on the Hawaii Life show don’t often talk about the extended families or support networks they are leaving behind. They don’t talk about older parents (and grandparents) or children with special needs or networks of friends. They talk about paddleboarding, learning to surf and living ‘off the grid’.

The ‘off the grid’ thing leads me to a specific part of the ‘living the dream’ meme I find frustrating. Much of the rhetoric these days about how we ought to live encourages us to ‘Close your computer,’ ‘Get off the grid,’ and ‘Disconnect!’ But living on that grid is the one single way I have to always be connected to my child when I’m not with her, and as she seeks out more activities outside of home, I suspect technology will become even more vital. I depend, in a very real way, upon the people around Georgia telling me what’s going on with her when I’m not around. I need to be reachable and accessible. I do not have the luxury of turning off my phone to demonstrate how evolved and authentic I am.

As Georgia doesn’t yet have the ability to move independently through the world and communicate her needs, we keep her safe and ourselves sane through technology. I love that I can text with the babysitter when she can’t find the one precious picture Georgia is searching for. In a matter of seconds, I can resolve whatever’s happening. As someone who is so often a ‘Georgia interpreter,’ I am happy to be available by phone or text for a question that requires advanced translation skills.

A typical example: “Georgia keeps asking for the parrot remote. What and where is that?”

Or the classic: “Georgia needs to know exactly what time you’ll be home.” Without readily available answers, these questions prevent just about anything else from getting done.

I still get vaguely anxious when I go for a run without my phone or forget it in my office when I’m at a meeting. I cannot imagine being disconnected – that’s my reality. To have people claim I’m somehow less evolved because I can’t afford to disconnect fails to recognize the reality in which I live.

Technology also provides a great deal of value to Georgia that we can’t replicate in other ways. The things she likes today are versions of the things she liked six years ago. She has an insatiable ability over many years to watch videos by Bob Marley, the Wiggles and excerpts of Caillou (ugh) or Teletubbies. But with an Internet connection, she doesn’t have to watch the same DVDs over and over again – which she would do if we did not somehow intervene.

Now we can direct her to millions of sites for Bob Marley’s music, and Teletubbiesin every language imaginable. The other day, she informed me “Teletubbies speak Spanish and say si.” Access to the Internet allows Georgia to grow in particular ways, to experience new things as she wants to and avoid repetition – at least in one dimension.

Georgia can’t tell her grandparents how much she’s loving her bike riding class or how much fun she had on a school trip. But pictures get sent by email from teachers to parents, and then outwards to extended family. I am happy to have a meeting interrupted by an emailed photo of Georgia with a medal, or a text from Chris with a picture of Georgia riding her bike. She can Skype with her uncle or her grandma or her tutor, all of whom are far away. It helps her learn about relationships and conversations. Being connected is an important way in to my kid, for everyone around her.

I always react to meta-narratives, or claims that there is only one way to be bold or courageous, or only one way to live a dream. To say that we’re less authentic because we haven’t packed up our Toronto house and given up our obviously-too-stressful jobs to live off the grid in a tropical paradise fails to acknowledge the complex realities in which we, and many other families live.

And you know what? My connection to technology does not feel like a burden, nor do I feel less authentic moving through the world with a smartphone in one hand and Georgia in the other. Technology has opened up our world and provided this little family with more freedom. It’s enhanced our ability to be ourselves and to be connected.

I can actually be separate from Georgia but know she has access to me. I can trust others who care for her to reach out and connect us. I don’t actually feel bad I’m not giving everything up to travel the world. I don’t feel less brave than people who have given up their apparently duller lives to backpack across the continent. I’m glad they’re doing it – and I might be able to do it but only if Georgia really wants to. So until then, I’m absolutely fine with not measuring brave using that yardstick.

Georgia Loves Me — This I Know

Posted on May 8, 2014 by Nancy Walton

One day last week I asked Georgia, as I do every day, what she did at school. Typically her answer is one serious word: ‘Work,’ without any further elaboration. But that day when I probed further, she said she had been in art class. I asked what she was making.

“A Mother’s Day card,” was her reply. “Who’s that for?” I asked saucily. The reply: “For Mommy!!”

I don’t really need the card – that snippet of conversation was a gift in and of itself. On Mother’s Day, we show love and appreciation to our moms. As for me, I find myself thinking about what I do to earn my child’s love, and what I do to make that relationship as good as possible. What does love mean when that child has autism? What do I know about how my child ‘loves’ me?

I’m currently reading a book that is very good on the challenges of parenting kids with special needs. It’s called Far From the Tree and is written by Andrew Solomon; it’s about parenting and the challenges that particular families face, including families with a child with autism. That chapter addresses the fact that parents of these kids often have to love a child who cannot show them love in return. Many kids with autism aren’t able to show affection in traditional ways, or can’t communicate or relate to the demonstrations of love that parents long for.

So, what is it like loving a child with autism, and how do you know whether she loves you back?

How do I know Georgia loves me?

The little voice in the back of my head asks, “How does any parent know that any of their kids loves them – I mean, really loves them?”

There is no standardized test for this. When I ask myself this question, I somehow just know that Georgia loves me. It’s a strange, wonderful, not-what-I-expected kind of love that is at once all-encompassing and challenging. It is bittersweet. It takes serious work to be loved by Georgia: she’s a tough customer who is simultaneously incredibly easy to please. The trick is to interpret her often-convoluted demands to find easy solutions — and then do it again, and again, and again. It’s taken me 14 years but I’ve figured out most of her working parts, and I think she loves me for doing so.

Some of the ways I know Georgia loves me.

1. Almost one hundred per cent of the time Georgia will ask me to go away, unless she needs to be fed, needs help finding her sunglasses or buffalo hat, or wants to watch Jeopardy with me. She’ll pull me off the couch in the basement and tell me to go upstairs, and I won’t see her again until she needs cookies, salami or small electronic devices. But while I’m gone, whether it’s for the day or much longer than that, whoever she’s with has the distinct pleasure of a constant stream of questions about when Mommy might be coming home.

2. When she’s cranky about having to go to bed and is complaining all the way up the stairs, I can get her to instantly smile, sing, dance and hug me by breaking into the “Mahna Mahna” song from the Muppets.

3. She’ll give me a high five on demand almost anytime (even through tears) and she doesn’t mind if I randomly take her hand once in a while when we’re sitting together, just to intertwine her little fingers in mine.

4. On lazy Saturday afternoons, I can still get her to stretch out diagonally across her bed with me while we lie there and talk about knocked-over chairs and the Jays. She nestles into my side and throws a long lanky Georgia leg over me. Heaven.

5. She asks me every day whether I am meeting her bus. I am able to do this far less often than I’d like to, and she never fails to be just a bit disappointed if I’m not there.

6. She asks me to wash her back in the bath. She asks me for a sandwich. She asks me to take her places and to make things happen. She doesn’t always get all of the things she wants, but she hasn’t stopped asking me to be the one to help her get them.

7. When I get angry and impatient and Georgia gets belligerent, we have bad days. Sometimes we have mutual meltdowns. There are tears and frustration — it’s not fun at all. And yet, even after these terrible moments, we find a space to reconnect, tentatively and with a familiar fatigue that comes out of old love, a love that gets in your bones and rests there. Even at her worst moments she is lovable, and I have to imagine that the fact she comes to me demonstrates that, on some level, she feels the same about her rotten old mother.

8. She takes my arm like a little old lady when we go out anywhere. For her it’s about balance: keeping up with the walking pace and being directed forward. For me, it’s about that little hand in the crook of my arm that suggests implicit trust and familiarity, that seeking of connection.

9. I look like Katy Perry. And Madonna. And Gwen Stefani. Wait — actually the truth is Katy Perry looks like me. As do Madonna and Gwen. This is Georgia’s unscripted, unsolicited claim when any of those three Georgia-favourite female artists is played: “Katy Perry looks like Mommy, right?! Yep, Katy Perry looks just like Mommy.”

I mean, who doesn’t see that?

10. When I put Georgia to bed, every night, she tells me she loves me. This has taken coaching, and explaining to her more times than she can process that I love her, that she’s my favourite person in the world and that I would do anything for her. Over time she has, I think, learned more about the emotion and the sentiment that I attach to these words. She says them back with her face upturned for a kiss and a smile. Occasionally, we do encounter pronoun confusion and she tells me that she loves herself, but I know what she means.

My child with autism has been taught to do and say and express things most children don’t require coaching for. Teaching her how to say, “I love you too, Mommy” at bedtime is no different than teaching her how to make a sandwich, to wash her face or to wait in a line at the grocery store.

The thing I cannot teach – the thing she does her own little self – is to take a concept that is taught to her and apply it somewhere else, without prompting and with recognized relevance. It’s the moment in the morning when she’s on her way out the door to the bus, all polka-dot sunglasses and aimless chatter. As she heads through the door and I grab a quick kiss good-bye, she looks at me with absolute clarity through grubby fingerprint-covered lenses, and says with her million dollar smile, “Bye, Mom! Have a good day at school, Mom — I love you!”

That’s how I know Georgia loves me.

Hope is a Thing With Spokes

Posted on May 5, 2014 by Nancy Walton

It’s spring. Well, it is spring some places in the world.

We in Toronto are enduring the season finale of “Grey and Rainy,” but the farmers’ market opens tomorrow and hope springs eternal. Hope for lovely fresh spring days when you can linger on a patio, go for a walk, plant flowers or even ride your bike. For many, spring is the time when we bring bikes out of sheds and depend upon them again as our primary mode of transportation, a form of exercise and, frankly, the most delightful and efficient way to get anywhere in downtown Toronto.

I love the feel of the first spring bike ride to work. It’s as freeing as almost anything else – to pedal past the crowded streetcar, to stop and pick up a basket full of groceries and wind your way home through the side streets. It’s a luxury of sorts: to have a bike that gets you to work, to have the stamina and skill required to ride in the city. To have good judgment, quick reflexes, the ability to pay attention to many things at once, and to be able to balance calculated risk with safety.

It’s a long way from riding my bike as a kid in the suburbs, when all you needed to know was the fastest route to the local pool on a hot day and the best hills to take home. You pedalled backwards – hard – to activate the brakes. You rode a scratched-up, hand-me-down bike from your older brother or sister, who had graduated to the revered ten-speed.

Think back to your first tentative moments on a two-wheeler. I remember my dad holding the back of the bike steady, pushing and telling me to “pedal hard” and then –whoosh! – I was in motion. A few scrapes and falls later, I was actually able to stay in motion. It was a great day when I learned to ride a two-wheeler.

Though the tricycle does the trick to get you up and down the street (where mom can still watch you out the window), the two-wheeler is an initiation into the world of the free. Or at least, the-more-free-than-you-have-been. You can ride past the end of the street to a friend’s house, to the store to pick up milk for your mom, to the library, the pool, the park. You can attach plastic streamers to the handlebars. You can clip pieces of coloured straws on the wheel spokes, and slap a few STP stickers on the frame. And voilà, you are stylishly at large in the hood.

I remember one of the first times I took my two-wheeler farther than my trike had ever travelled. I turned the corner of Holywell Drive in Etobicoke and left the comfort of my own street, so excited at the feel of the wind on my face and the prospect of being at my friend Gail’s house in a mere matter of seconds that I could barely spare the effort to wave good-bye to my mom. I just lifted my hand in a casual backwards wave, without turning my head. I imagine she was watching me and I hope she was smiling.

Over the past few weeks, while the warm weather briefly visited us, I saw lots of little ones out on their brand-new, tiny two-wheelers, with anxious parents running alongside. The faces of these little kids look the same as when I was a child. The anticipatory excitement, the taste of freedom, the triumph of smooth motion over shaky balance. But these days when I look at the parents’ faces, what I see is something that I want for myself too: the feeling of reliving a formative childhood moment. Where, all at once, you realize just how old you are but at the same time feel thrilled to watch your own child, repeating history. Your son wobbling on his two-wheeler makes you remember your first fall. Your daughter coasting down a hill, her feet off the pedals, brings back the feeling of the wind blowing past you as you soared. The overlay of memories with real life, one generation later, is the true privilege of parenting. And it’s not something diminished by the modern world and the complexity it offers through technology and virtual connectedness.

I long for that feeling of watching my child and re-experiencing my long-ago initiation into bike-riding. When the living room was open to let in the summer air and the sheer curtains, caught in the breeze, blew back out through the open window. When your best summer friend was your transistor radio, and you wore a halter top and shorts with bare feet to the A & P. When you rode past your friend’s house and yelled their name without dismounting from your bike — and they were out of the house and had caught up to you on their own bike by the time you reached the park. When you both left your bikes lying on their sides in the grass, their wheels spinning in the breeze while you hung out on the swings, giggling and talking for hours. The look I see on parents’ faces as they watch their own children on their two-wheelers suggests to me that they too are lost in a sentimental journey of their own.

Georgia hasn’t yet learned to ride a bike. She rode a tricycle when she was little, and my dad fashioned a “pushing rod” out of an old broom handle with a two-pronged attachment; I used it to push her down the street, as she couldn’t quite get the knack of pedalling. Nor did she have the strength in her legs to move forward more than an inch at a time. So we pushed.We avoided downward-sloping hills – braking wasn’t a skill she could develop. We avoided upward-sloping hills – pushing her up was more work than anyone could sustain. It worked while she and her trike were still small, but as she grew out of it we wondered how she would ever progress to a two-wheeler, and how we could make that work. The adult-sized tricycles are good but impractical; heavy and large, they pose huge mobility and storage challenges. I’m not sure Georgia actually has the strength to power one of those things.

And yet the idea of Georgia riding a two-wheeler opens up a world of promise. She’s not a great walker, so a long, leisurely summer afternoon walk is in reality a slower and shorter walk. She tires easily, has difficulty focusing movement in a particular direction, and has poor balance just manoeuvring up the stairs without a railing.

We’re sending her this year to our very good friends Laura and Brett to begin to learn to ride a two-wheeler. Husband and wife, they run the Steps program out of Stouffville. They are absolutely remarkable in a number of ways. When we first met Laura and Brett, Georgia was around three years old, and we had been sent there in order for her to learn how to ride a horse — a skill that had a number of advantages for a fairly non-communicative, non-walking tiny kid. I had no idea what we were in for when we got there.

At first I thought Laura was some kind of horse whisperer, but quickly realized that actually she was some kind of kid whisperer. She treated Georgia in a way that implied she actually hadexpectations of my child. This was novel; at the time no-one expected much of Georgia. Laura stuck her on a horse, insisted that she pay attention and made her work.

And Georgia did work. She was, and remains, the epitome of ‘highly distractible’ but she focused on the horse and her riding the entire time she was there. The horses were patient to a fault, never minding much that Georgia liked to end the class by clumsily petting their faces (well okay, their eyes), and then stand underneath them kissing their tummies. I knew from the first moment in that barn, watching my kid on a horse led by Brett or by Laura, that this was a unique setting. It’s the kind of setting I want her to learn to ride a bike in, and the people I want to help her learn that seemingly, but not really, straightforward skill.

It is such a simple thing in a way: riding a bike. It’s something that most of us take for granted and can’t imagine not being able to do. Most of us haven’t stopped to remember the feelings we once had when we were still learning, and when we finally succeeded in riding our two-wheeler down the street. But I know those feelings are there: the look on many faces tells me that the experience extends beyond that magic “Hey, my kid is riding a bike!” moment. It’s an experience much more complicated and special.

I know my kid won’t likely slice up straws lengthwise and stick them onto her bicycle’s spokes to enjoy the sound they make while in motion. I suspect she won’t ever ride to the store to buy milk in her bare feet and a halter top. I don’t think she’ll be yelling at her friends to come out and play, or riding home from the pool as fast as she can go to beat the street lights. But something about spring makes me yearn to see her climb onto a crappy hand-me-down bicycle, and then wave over her shoulder as she heads down the alleyway, out of sight.

Life With Georgia

by Nancy Walton

Monthly Archives: May 2014