I know that parenting kids should be a reward in and of itself. Uh huh. But let’s face it – we all look for those momentary, even fleeting rewards that help us be better parents. That help us face a day after a sleepless night up with a sick kid. We do what we do because it’s what we do: as parents, we love and care for their children. We meet their needs and sometimes surpass them. We provide for them, and not just the stuff, but provide them with opportunities, with love and with the tools to help them move forward in what is a very complex and demanding world. 

But we all like rewards, right? That look on her face when your child opens the Christmas present she never dreamt she’d get. The hug that comes out of nowhere after a great day on vacation. The “Thanks, Mom” for something as benign as covering up tiny, cold child feet with a blanket as you walk by the couch. The gratitude for a favourite dinner.

I’ve been thinking a lot about rewards lately. We’re in South Carolina on our annual pilgrimage to the long grasses and the ocean. And we met this great family, two parents with college-aged daughters. The dad from what I can surmise seems to have suffered some kind of health event – he has difficulty articulating speech and has some physical signs of serious illness. But he is, bar none, the most enthusiastic, good-natured father I’ve ever seen.

The thing with this family is that they spend 24/7 together. They are out on the beach at 7 a.m. (chairs and umbrellas lugged out by dad, gleefully) and spend the entire day chatting, swimming, paddleboarding, kayaking, Frisbee-playing, reading books and eating together. They are mortifyingly bad Frisbee players – can’t catch that thing even once – but man, do they have FUN. And in the evening, the daughters take out the paddleboard and the surfboard while mom and dad sit on the surf and watch. And talk. Once it’s dark, they are out on the beach playing glow-in-the-dark Frisbee, wearing glowing headbands and throwing (but not catching) a glowing red and blue disc.

They are unstoppable in their capacity to have fun together and they’re unfailingly nice to each other. One hot afternoon in 90 degree weather, I watched the dad carrying two huge ice cream cones across the beach to the girls. The look on his face was priceless: pure happiness at the anticipation of their pleasure.

I talked with the dad a bit, poolside. They’re from Pittsburgh and he and his wife are working class parents. One daughter is an engineering major and the other studies abroad in Italy for the year. They work hard to give their daughters a good education and these yearly vacations that all four of them love (I mean, LOVE). They’ve been coming here since the oldest daughter was a baby.

As the dad said to me, “I work hard all year. But these two weeks, oh man, we love it here. And it’s all about my girls. We just make it all about them. That’s the reward for me.”

Georgia loves it here. This is the first year she began asking to come here for summer holidays in about March.Keep in mind I usually start longing to be here about two hours after I arrive back in Toronto, so March is a bit late for me, but I’m hopeful about further beach-brainwashing her. She loves the pool, the ocean, the lifestyle. Eating lunch oceanside or on our little beach balcony. But regularly, she asks to go home or to go to Uncle Ralph’s house. When we tell her that there are 11 sleeps left here, she whines to go home to Toronto. Two minutes later she’s happily splashing in the pool. Momentarily. Then she’s changed – to worrying about whether I’ll wash her back in the bath later on.

The experience of rewards are different with Georgia. Her pleasure is fleeting and fluctuating and often hard to hold onto. She takes pleasure in simple things – and the harder you work to provide her with an experience, the less likely she is to “love it.”

Case in point: We decided, together, that it wouldn’t be worth the effort to take her to visit the giant water park up the highway. As amazing as it looks, and as much as she loves water, she’d be overwhelmed by the line-ups, anxious about the crowds, and far happier in her own little lazy pool here with an inner tube and her goggles.

When Georgia opens a present that we think she’ll like, she’ll seem pleased but is quickly distracted by something random.

She doesn’t remember who gave her presents. She has no concept that we work hard and save up for these precious weeks on the beach in order to give both her and ourselves the pleasure of being here. Her experience of pleasure here is different in quality than the pleasure of other kids – she isn’t running on the beach carefree and laughing. She’s worrying a bit about what’s next or what’s just happened…

But once in a while, I see it. I see an ephemeral, genuine smile of pleasure cross her face when the ocean wave catches her off guard. Or a perfect giggle when we dump her out of her inner tube into the pool.  A relaxed, momentary grin when she’s eating her favourite lunch outside. A happy dance when you hear fireworks outside on the beach.

Last night as I was tucking her into bed, after a perfunctory protest about the lack of fireworks on the beach, I pulled up the blanket under her chin, as I do routinely and without thought. She nestled into the bed and quietly sighed, “Ahhhhhh – thanks, Mom.”

I stopped and blinked and looked at her for a few moments, remembering that I’ll never quite figure out her pleasure but realizing how easy she may well be to please. Reward enough for me for the day.

In line today at the Piggly Wiggly grocery store in South Carolina I took note of the surfeit of tabloids and magazines whose editors are apparently obsessed with Kate and Will’s as-yet-unborn baby.

Second prize for excessive publicity goes to the new Kardashian-West compilation baby. And then there’s the constant obsession with celebrity kids, whether Brangelina’s brood, Suri and her high heels, the tiny Beckham supermodels or Gwen Stefani’s uber-cool, mohawked small-boy-band in the making.

But in the midst of all the “breaking all the pregnancy wardrobe rules,” acquiring the perfect nursery accessories, hiring the perfect chef and trainer to get back to pre-pregnancy weight (“or better!”), the Hollywood baby showers of tiny perfect cupcakes that no-one eats, and tiny perfect presents for the imminent perfect baby, I wonder.

What if Kate and Will have a child with autism?

In the midst of the unrelenting acquisition of perfection, what if something, somewhere is just two degrees off? What if they have a wonderful baby who won’t stop crying but no one, not even the Queen, quite knows why?

A baby who can’t sit still for royal events? A baby who misses all of her developmental milestones? What about a kid who screams in public or has to wear earphones to cushion the sensory input at noisy events? What about a child who laughs too loudly and inappropriately at public events or talks loudly through movies? What if they don’t have a “typical” child but rather one who lives outside the norm?

What would that change, if anything? Would the world change at all? Would the world ever pay as much attention to autism as it does to the tiny shoes on the feet of celebrity children?

In the first course on the ethics of disability I took in graduate school, we learned about the concept of social construction. Simply put, the things we experience as “normal” in the world are only so because of the context in which we live. Because of the world we have constructed, we are socially programmed to consider certain things normal (and, of course, other things abnormal). Beauty, justice, gender, disability, romantic love – these are all examples of social constructs.

Here’s a tangible example: The modern world of architecture and urban planning was carried out by largely able-bodied professionals. Thus the norm is stairs — and ramps are the exception. If most architects and urban planners were in wheelchairs, ramps would be our norm and stairs would be something that we would add on, when we remembered to.

Autism is (still) very much the abnormal.

Even with increased awareness and a related increase in prevalence, people with autism still live outside the social construction of normal. As a mom to a kid with autism, I feel it more acutely at certain times, in certain places. In the movie theatre when she doesn’t get that she cannot talk constantly and loudly throughout the movie. In the restaurant where she wants to cuddle the neighbouring diners’ small baby. In the street when she asks strangers their name.

All of these things are outside of what we consider to be norm – unless we lived in a very different world.

We’re on vacation in South Carolina right now (thus, the Piggly Wiggly). We took Georgia out for dinner last night. We usually eat dinner in our little rented beachside home, so going out is kind of a big deal.

Now Georgia usually loves – loves! – restaurants. Especially sushi restaurants. The kid eats salmon sashimi the way other kids eat cheesies. So we found a great sushi restaurant just inland from where we are. We got her a new dress for dinner (thank you, Target). The drive started badly, as she was terribly concerned that the drive would be too long and that we were actually driving the wrong way. The constant diatribe of worry from the backseat was foreboding. On our way into the restaurant we found a thumb-sized frog in the parking lot, made his acquaintance, named him after one of Georgia’s teachers – her idea, and took his picture.

We walked into the place and it was happening: lights, televisions, big fun booths, super-looking sushi and a friendly waitress whose name was Courtney. So far, so great, right?

For some reason – and this is very odd – Georgia didn’t have a good time at all.

She was anxious about something from the moment we left home. Ruminating – she does this out loud, unlike most of us silent ruminators – increasing her anxiety level by the minute and my level of anxiety along with it.

As soon as we sat down, she began repeating that “the food isn’t here yet” and demanded her iPod and headphones. Once the food did arrive and the technology was confiscated, she continued to worry that the food wasn’t ever coming, despite it being in front of her. She then vocally worried that we weren’t going home yet, and refused the sushi she would normally love. Her agitation increased, and with it, her volume. While the waitress thought we were just hungry (“My, you ate that up quickly!”) we just wanted out. A loud scream of frustration as her iPod was taken away in preparation to go home drew the attention of our already-curious fellow diners, and was the crowning jewel of the evening.

I was acutely aware that Georgia’s behaviour, while bafflingly new to us to some degree, was making others uncomfortable. It was, so to speak, outside of the norm for restaurant behaviour.

I read somewhere that Brad Pitt had rented an entire pizza restaurant for himself and his 6 children. They ate pizza, threw stuff, ran around like crazy and just generally wreaked havoc. Stuff you’d never let kids do in a restaurant full of other people. He knew that. So he made sure that no one else was there whose dinner, whose sense of peace and quiet, would be rudely interrupted by their presence.

What if we changed the social construct of normal for a moment? What if the world considered persons with autism the norm – and those without to be the ones who are just a little off? I chuckle to think of it. What kind of a world would we live in? It’s impossible to say; take 50 kids with autism and you have 50 very different little people.

But if Georgia constructed the world, it would be interesting, colourful, sweet and even a bit mystical. It would be difficult to figure out. Baffling at times. It would be normal to talk through movies and call out even the most minor character (e.g., a bird that appears in the sky for a micro-second flying over a minor character’s head). Christmas could be on any day you wanted it and there would be merry-go-rounds on every street corner.

You could cuddle any stranger’s baby. Every T-shirt would have a team number on the back. Vanna White would live next door. You could dance much more on the beach. Pizza would never be too hot right out of the oven and you could sing loudly in restaurants.

Without, of course, renting the whole place out first.

Last week I talked and thought a lot about milestones. And then in the middle of my Oh-I-am-having-so-many-difficult-milestones week, a terrible and sad milestone happened. My good friend J died. I am pretty sure that he was 28 years, 2 months and 18 days old. Too soon and too early. I’ve been finding myself lying awake early in the morning, thinking about J for the past few days. And this morning I found myself thinking about his mom.

My friend J has been ill for as long as I’ve known him. He had cystic fibrosis. He lived with cystic fibrosis day in and day out, fought it, explained it tirelessly and patiently to others, denied it when he wanted to do something fun, acknowledged and respected it when it was particularly virulent and as he said, “mopped it up” all the time. He was a smart philosophy student and I had the distinct privilege of working with him at the university and conducting a wonderful reading course, designed by J and I and another student.

During that time, we did a lot of talking. Sometimes out of the office and sometimes over wine or a flattish warmish beer at the Imperial pub.  We evolved our collegiality into a friendship and stayed in touch, often simply by email and Facebook. Occasionally we hung out in his hospital room and he gave me chocolate bars that he didn’t want and we critiqued the nurses’ IV techniques. But all of it, well, it was never enough and I figured I would have him around for longer.  I have an unanswered email in my Facebook messaging from a few weeks ago and I now chastise myself for not calling or following up or finding out just how ill he was, to not answer an email. I just figured he’d be back.

When we did connect, we talked. A lot. We talked about philosophy (well, he taught me a lot about philosophy to be honest), but about a lot of other things too – with no apparent common theme to someone else perhaps, but it was evident to us. J wanted to talk about the absolute value and experience of living: sex, love, parenting, fear, death, health, illness, bodies, sickness, messiness, loss, gratitude, loneliness.

J used to ask me a lot about being a mom to Georgia, about what it was like, what I felt like, how I thought about it. He talked to me a great deal about his own mom, about her help and patience and kindness. Being a mom to a kid with cystic fibrosis is likely one of the toughest things there is, I imagine. Not only does your child have a serious chronic illness, and requires daily therapy, medication and close monitoring, but that illness is also predictably life-limiting. You will watch your child struggle for breath, and struggle to do the things we all take so much for granted: breathing, eating, sustaining. You will take care of your child for all of his shortened life and you will, very likely, watch him suffer and watch him die.

I think now that J’s exploration of my own sense of being a mom was very likely helping him take care of his own mother. He was a person who took care of others, in a very unique, special and caring way. I had a sense that he was unthinkably sad knowing that his mother would lose him and he wanted to care for her in some way. When I explained to him my own feelings about having a child with special needs, his response always showed his genuine insight into that feeling few others really get. He used to say that he was grateful to those around him “who got it”, who could understand, as much as might be possible, about his illness and the experience of having CF, without being able to experience it: the sympathy, not empathy piece.  And in turn, he “got it”. I never felt that I had to explain or justify my feelings about being a mom to Georgia to J, but he questioned and probed and asked, sometimes quite difficult questions. I see now that as much as he was asking me to explore my own feelings, he was also exploring them for himself and for his own family and his mom. He always said he wanted to talk about things, and push and find answers, as he didn’t have much time. And he had people to take care of.

In the midst of all my angst about Georgia’s milestones, I have to thank J for once again teaching me something. As difficult as things may be sometimes, I have the incredible luxury of time to figure her out.

Yes, I have a lovely child who will need my fairly intensive, day-to-day help for all of her life. Yes, I’ll worry about who will meet all her little idiosyncratic needs once I’m not around, but for now and many years to come, I have her with me. I have time. Time to figure out how to take care of her best. Time to ask questions and reflect. Time to deal with all the hard stuff and work through it. Time to hug her and hold her close. Time to see her sleep peacefully, to take care of her when she is ill and then time to watch her get better. Time.

Time to make lists of all the little things she likes.

Oh yeah, I started one.

She likes a Scooby Doo (or Angry Birds) bandaid on the back of her left hand every night since she once, years ago, had a bandaid put there after being hospitalized with an IV.

She can cut her breakfast fried egg, but you need to put the lateral cuts in place and have her do the cross cuts only.

She needs to be told exactly what time to get up before she goes to bed, or she’ll wake up in a panic at 4 am, wondering.

She’ll strongly object to carrots on the side of a sandwich, but if you just put them there and don’t say anything, she’ll eat them.

She wants to open the back gate on the way out to the car and you have to wash her back in the bath.

She likes a French braid on weekdays and a “pony-braid” on the weekends. Don’t cut her hair so short that a braid isn’t possible.

She needs to have her sunglasses on every day, and it’s not worth the fight.

She likes two cookies in her lunch.

And if you play Elton John, she’ll want the “think it’s gonna be a long long time” song over and over (Rocket Man).

At the end of the day, despite all the things I may agonize over or worry about, Georgia is very likely to enjoy a long and lovely life. I will have her and all her little quirks for much longer than J’s mother could ever hope to have had her lovely son with her. While I was so busy worrying about milestones, she is mourning her son, and I am so very sad for her. Georgia’s milestones make me emotional, yes, and I’m grateful that I can experience them.

You know, I think that if I had a kid with CF, I’d be so tempted to keep him all to myself for the likely limited time that I’d have him with me. It’s irrational, of course, and not possible. But I can see having that selfish desire, to hold him close, to not share him.

When I think about J’s mom, I think about how I am so very grateful to her for sharing him so generously with the world and for the brief time I was fortunate enough to learn from him and call him my friend.

So it’s the month of milestones. Birthdays, graduation, change.

Milestones. Groan.

Georgia is graduating from Grade 8. She’s moving into high school. She turned 14 this weekend. I can say it all with a smile but also through gritted teeth.

I don’t know why but milestones are tough for me. Maybe they are for everyone and I’ve just been frightfully unaware, but I find them unbearably tough. Tough to the point of having that irrational desire that (admit it) all rational people occasionally have on hearing the sound of the alarm and the birds in the morning:  pull up the covers and lie there hoping the milestone will just pass and go on its way. It’s not a particularly adaptive desire, and one that I haven’t acted upon. At least not for longer than the snooze button allows.

People get excited about milestones. Understandably. There was an end-of-year concert at Georgia’s school and last night there was the graduation ceremony. Her birthday found us in the backyard, barbecuing and entertaining the wide range of generous, warm people who love her. People keep asking me how great it is for me to have a kid graduating from grade 8. It’s great. Yep.

But I admit that I have a bit of that I-wish-I-was-just-under-the-quilt feeling.

Let me try to explain. Bear with me, dear reader.

Umami.

For many years, we learned that there are four basic tastes: Sweet, sour, bitter and salty. Somewhere about the early 20th century, a Japanese researcher named Kikunae Ikeda figured out that there was, in fact, a fifth taste. Something that wasn’t quite sweet, sour, bitter or salty: a taste that existed on the edges of those four typical taste experiences, and blended some of the things about them into a unique formulation: Umami.

Umami was officially identified and named in 1985 but still remains a mystery to many palates.

Umami is most often described as a “meaty” or “savoury” taste and it is acknowledged that it’s hard to pin down in the same way that we can easily describe and identify “salty” or “sweet”. It’s broader, less specific. It’s something often described as being much more than a simple one-dimensional taste.

Umami is how I feel about milestones. Spring concerts, graduations, birthdays. It might be all mixed up mid-life hormones (so you do know what I’m talking about here) but I have a complete and utter fifth-taste reactions to most milestones. While most people would describe the feelings at their kid’s grade eight graduation as “happy” or “bittersweet” or “proud” or even “excited,” I’m feeling, well, umami. I’m feeling a feeling that I can’t quite find in the thesaurus that is on the edge of all of these feelings and a bit of a blend of them. It’s not as “happy” or as “excited” as I think others want me to be. The feeling is happy, yes and excited — but it is also worry, fatigue, concern, angst, sadness and that feeling of loss and difference I try to push away.

At Georgia’s spring concert, her class of kids with special needs performed a cool choreographed dance to a pop song. She was too giggly, overwhelmed and excited to do many of the moves but did get in a few wild hip-grinding moves that were a little bit more of the new Miley than the old. Everyone is kind and wonderful saying how great she was.And she was. Truly.

I’m proud of her and her accomplishments; this includes her seriously wild and groovy dance moves. But watching other kids half her age singing complicatedly beautiful solos and generating whoops of enthusiasm from genuinely impressed grown-ups, there is a taste of something else at the back of my throat. Umami.

My lovely, lovely kid – like other grade 8 girls – wants to wear a dress and hairband to graduation. I am secretly thrilled. But I know that I’ll feel that inevitable wistful, heartache-y feeling seeing her lined up with the other grade 8 girls who will look and act just so different from her.

I’m used to this. Really, I am – but being used to something doesn’t make it easier. As she grows, her “difference” from other kids in her cohort becomes more and more apparent and the looming shadow of high school opens up that chasm of difference. I want the world to be kind to her when they see that difference, and I worry that the world will not be as kind as I would wish.

I worry that I’m not being a good enough mom for this wonderful and evolving person who is inextricably complex. And who will need the kind of guidance and encouragement that some days I really have to work to generate. I worry about not always showing that I’m  as proud as I am — or expecting more than I should. I worry about how not to compare her to typical kids her age, kids who will now become her companions only in order to fill up their required volunteer hours.

I worry about whether or not she will ever develop real true BFF friendships, one of the greatest things about adolescence. I worry about her being taken advantage of or about her being bullied or teased or worse. I worry about her never being able to read, while her counterparts recite valedictorian speeches in French. I worry that she’s getting a grade 8 diploma and can’t write more than her name. I worry she’ll get lost in the educational system that gets more expansive and more complicated every year she gets older.

I worry about what she’ll do with her grown-up days once her peers have graduated and gone off to university or college or found jobs. I worry about who will take care of her one day when I’m not around. Honestly, I worry about whether or not she’ll ever be able to learn to tie her shoes to get to school. These are the wildly complicated things that will, for a few seconds, take their turn rushing through my head. Right alongside the pride and happiness, as I watch her onstage at graduation. Umami.

Milestones are wonderful things. By their very definition, they are events marking a significant change. They provide reference points along the road of life. And they elicit lots of complicated feelings for lots of people for lots of reasons. Not just me, I know. There are many who would like to do that whole under-the-quilt thing for a whole range of milestones.

But nope. I show up. I cheer her on with a genuine smile. I hold up my iPad just as high as the parent behind me to record her getting her diploma. I cry as much as the mom beside me, who may never know it’s for different kinds of reasons.

I’ll continue to be proud of Georgia’s accomplishments and unique abilities and love her madly.

I’ll try to help the world to be as kind to her as I would wish for. And maybe I’ll also work a bit at washing down the umami with a cold glass of celebratory champagne.

Happy graduation to the kid I love most of all.

In keeping with the recent “Convos With My 2-Year-Old” meme, I submit an array of recent typical conversations with my lovely companion, Georgia.

Some of Georgia’s key attributes include: 1. the ability to find a pointing finger photo-bombing a picture hilarious and 2. the ability to find contentment in eager, tenacious repetition. I’ve provided context for each conversation but you should also know that Georgia also has a tremendous capacity for generalizing these conversations in different contexts.

She’s also at that unique and difficult age – the “terrible tweens.” It has all the characteristics of the early tween years (a craving for independence, the desire to choose everything, a generalized loathing of all things your mother tells you to do). Along with that, it has the characteristics of the terrible twos. The tantrum-like responses, the innate ability to turn mild emotion into something gone completely haywire, the recognition of what helps you get the stuff you want once you realize you actually want something.

Add a bit of early teenage hormones to the mix and … well, you see where I’m going here.

Keep in mind that if I’ve remembered a conversation enough to provide an account of it here, it is VERY likely that I’ve had that same conversation at least six thousand, four hundred and fifty-three times. Or thereabouts.

Every Single Meal Since Georgia Turned 13

Me: “You asked for juice. Here’s some juice for you.”

[Reader: feel free to substitute “juice” with “cheese” or “milk” or “apples” or “carrots” etc]

Georgia: “No thank you. I don’t like juice. Ummm, I HATE juice.”

Me: “Uhhh, okay. Don’t drink it then. No problem. Up to you.”

Georgia: (eye roll) (lays head on table) (lifts head slowly) *gulp gulp gulp*

Almost Every Single Night Since She Turned 13

Me: “It’s time for bed, Georgia.”

Georgia: “I hate bed. I don’t want to go to bed. I want to PLAY!!!”

Me: (feigning okayness with that) “Okay, well don’t worry about bed then.”

Georgia: “Ohhhh I wanna go to bed! ARGH! I’m so tired!”

Me: “Okay cool, let’s go to bed then if you’re tired!”

Georgia: (falls to floor in a heap) “Oh, I’m so DISAPPOINTED! I’m not tired! I’m dead.”

Dinnertime

Me: “Hey George, your favourite dinner is ready!!”

Georgia: (yell of frustration) “No! I don’t want dinner!! I want to play!”

Me: “Okay well, then, just come when you’re ready. It might be cold, but hey.”

Georgia: “Oh I’m so hungry! I’m sooooo starving!!”

Me: (confused pause) “Well then come. Eat! And then play!”
Georgia: “No! I don’t want dinner! I want to play! I’m soooo hungry! Argh!!!” (head on desk in frustration)

Me: (sigh)

Every School Day Morning at 7:35 am

Me: “Georgia, put your arms in your shirt here.”

Georgia: “The finger in the picture is funny, isn’t it, mommy?”

Me: “Focus. Concentrate. Put your arms in the shirt.”

Georgia: “The pointing finger is SO funny, isn’t it?” (guffaws)

Me: “Arms in shirt, Georgia. You’re going to be late.”

Georgia: “But the finger is so funny, mommy. Yes, it’s so so funny.”

Me: “It’s funny once. Only once. Really. Arms. In. Shirt. Please.”

Georgia: “Oh it’s so funny. Harrison, Harrison, it’s so funny.”

Me: “Georgia, if you don’t get this shirt on, you will miss the bus. Arms in shirt. PLEASE.”

Georgia: “The finger, oh yes, the finger is so funny. And the shopping cart. The shopping cart is SO funny.”

Me: “Huh? What? The shopping cart? Huh? Oh, I don’t know. I guess it’s funny. Sure, yes. Whatever. It’s funny. ARM. IN. NOW.”

Georgia: “The shopping cart fell over. It’s soooo funny. And the finger. The pointing finger is funny. Oh mommy, it’s soooo funny.” (chuckling)

Me: “Yes, it’s funny. Thank you for putting your shirt on.” (tired sigh)

Georgia: “Oooohhhh I don’t want a shirt!!!! I wanted a dress!!!!!”

Every School Day Morning at 7:45 am

Me: “Georgia, you need to finish your cereal. You’re late. Eat a bite.”

Georgia: “When’s the spring concert?”

Me: “You know when it is. We talked about this. Three weeks away. 21 sleeps. Eat your cereal. Eat. Please.”

Georgia: “The spring concert is at 6, right? Right after dinner, right?”

Me: “Eat your cereal, Georgia.”

Georgia: “We’re going to the spring concert, right? After dinner, right?”

Me: “No, you’ll get dinner there. You know this. We’ve been talking about this since February. 21 sleeps. Georgia. Cereal. NOW. ”

Georgia: “Okay, so we’re going to the spring concert tonight, now, after dinner. Good. Chris, you’ll wear a tie.“

On A Recent Road Trip From Ottawa, Somewhere On The 401

Georgia: “Hey, this is just like a bus ride, right?”

Me: “Well kind of, I guess, but way better, I think. It’s our car and not a bus. And you get good music.”

Georgia: “But it’s like a bus ride.”

Me: “Okay sure. I guess.”

Georgia: “It’s like a bus ride. On a ziggy bus!”

Me: “Huh? Sure, it’s like that. I don’t know…What’s a ziggy bus, sweetie?”

Georgia (emphatically): “A ZIGGY bus. This is like riding on a ziggy bus.”

Me: “Um, yeah, okay, but I still don’t know what a ziggy bus is.”

Georgia: “Bob Marley. His dad. A Ziggy Marley bus!”

Looking in the rearview mirror, I see a bopping figure with a smiling face wearing sunglasses, and a reggae-blaring iPod.

In A Very Large Elevator With Her Mother and A Total Stranger

Georgia: “It’s sooooo squished in here.”

Me: “No, no it’s not really squished. There’s lots of room.”

Georgia: “I’m really squished. And that’s a stranger.”

Me: “Yes, Georgia, that is a stranger.”

Me to Stranger (smiling): “We’re learning about strangers right now.”

Georgia: “You shouldn’t talk to strangers.”

So, we’re teaching Georgia to read. Let me put it this way: We are committed to a long-term project to see just how literate we can make this kid. It’s been an enlightening and emotional process, teaching Georgia to read.

Georgia has always loved books. I made sure that she did. From the moment I could get up and buy things for her, I bought books. Board books, bath books, pop-up books, fairytale books, “first” books, Dr. Seuss books, teething books, novellas, anthologies, series. I bought her the Lord of the Rings trilogy when she was about 2. She looked back at me blankly, giggling, and stuck the corner of one of the novels in her mouth. And then she drooled. This I saw, of course, as pleasurable anticipation.

Books have been a big part of my life for as long as I can remember. I was that kid who found sustenance and a rich imaginative life in the pages of a book. When I remember the thrill of anticipating summertime, it was for the swimming and camping and playing outside. But it was also (admittedly, mostly) for those long summer afternoons up a tree in Muskoka outside my trailer, or inside my tent wearing the flashlight out late at night, reading books.

I was the geeky kid who would take a book into the bath and be still there an hour later, shivering in the cold water with my mom knocking on the door telling me to “get to bed!” I was constantly reading books. In fact, devouring books. I’ve always been able to find companionship in a book. With brothers who were a lot older than me, summertime at our trailer up north meant that often I was on my own. Happily, I took to the well-worn trails around the campground with my badge-covered canvas military bag filled with Tolkien and L.M. Montgomery, rich visions of Frodo and Anne Shirley in my head.

But I don’t remember learning to read. Weird. I don’t remember sounding out letters or reading through first grade readers. I just remember being able to. That’s how natural it felt and still feels, upon reflection. I have memories of sweating over fractions, and loving long division once I figured it out. I even have memories of learning geography and history, but reading? Nope.

Georgia’s journey to reading (or whatever her version of literacy will be) is on the other hand very real, very memorable and very, well, palpable and constant. It’s been an interesting journey. Here’s a quick synopsis.

First, I was told she’d never learn to communicate meaningfully, read or write. Never. Next, I was told that I shouldn’t waste my time trying to teach her to read or write as she could only learn skills of daily living, if those. Then I was told that, yes, she could learn to read and that phonics would hopefully work. She began to identify letters, sounds, small words. Then, no, I was told phonics probably wasn’t going to work with her and we should instead focus on teaching her sight-reading and identification of common words. Or maybe we should just focus on important words for her survival and well-being (like “Women” on a bathroom door or “Stop” on a big red sign). We now have a wonderful tutor now who has worked with Georgia for a few years and who is making tremendous progress, somewhere in between learning sight words and principles of phonics and just, hey, reading for fun.

Through it all, I’ve read to her. I’ve filled her room with books and happily allowed them to be strewn throughout the house or in the car on a road trip. And Georgia loves books. Not in the way most of us experience that love, but rather in her own unique way.

She loves to have her books around her. She multitasks with books, playing the drums wearing a bike helmet (but, of course) while her books are arranged around her, on the couch, some open and some closed. (That part, for Georgia, is an exact science: the same pages are open in the same books, more often than not). She reads books on her iPad while listening to the Beatles or Marley – or a medley, with a bit of Wiggles thrown in there. She carries her favourite books around the house from bedside table to couch to basement to backyard swing and back to bed. I still throw a few Curious George books in my bag when we go out for dinner. I’m likely the only person I know with a 13-year-old who is very likely to reach into her purse and fish out a Scholastic book about Dinosaurs! or Firefighters!

I’m learning two things from this journey with Georgia. The first is that I’ve learned how to learn how to read. I’m learning how difficult it is to sound words out or to recognize the differences between “tan” and “cat” and “car.” I’m struggling along with Georgia, with how to best help her, and setting no expectations – except that she doesn’t lose her love of books through the hard work, which is a risk.

The second thing is that I’m learning more about the complex and diverse value of books, about how the mere physical presence of books surrounding us can provide comfort, stability and consistency. How carrying a book in your purse or around the house can make you feel better. I kind of knew that already – those who know me are familiar with my stacks of books in various corners of the house – but it’s different with Georgia. I’m learning about how a closed book placed beside you on a restaurant table can ground you. All this from someone who doesn’t actually read. Yet.

And then I have this dream. I dream of her reading, of a warm summer day on the beach. We’re sitting together in our little beach tent – and we’re reading. We stop here and there to share a comment or a cheesie. She looks up at me and smiles, putting her bookmark in her book as if it’s the most natural thing in the world and then in true Georgia-style, tosses the book aside casually, gets up and putting her headphones on, gives me two thumbs up, and dances down the beach.

Having a child with autism changes your world in many ways, but one way I’ve seen my life change a great deal is in my sense of “community”. We all have a community of support: our friends, colleagues, our families. We build community and it is a dynamic and organic thing — our community — that changes as our lives and situations change.

We build relationships and sometimes they fail. Sometimes people move away or simply drift away. We lose touch with people despite our best efforts. At the best of times, people stick with us through thick and thin and we do our best. We connect, disconnect then get back again as if nothing ever happened.

I remember my mom telling me about her relationship with her best friend, Marvene. They’ve been best friends since they were young, and have remained so to this day — both of them are now nearly 80.

My mom used to tell me that no matter what happened and no matter how long it had been since they’d been in touch, they could always start up again where they “left off” — as if nothing had happened. Marvene had five kids, and my mom had three. They had jobs, busy lives, husbands, vacations. They dealt with life and death events and kept the fabric of their families and friendships intact.

I have good friends. I have supportive and loving friends who understand things about my life that I’ve never had to explain to them. But I also have what I’d call unexpected and amazing friends, who have provided me with unsolicited and unscripted support of a kind so meaningful, it’s almost too difficult to write about.

But I’m going to. And I’m going to start with one person who had a significant impact on my and Georgia’s life. Who provided me with more than she’ll ever know.

Barb.

Before Georgia was even diagnosed with autism, when we thought her problems were due only to being developmentally delayed and challenged in mobility and walking, we were referred to the Sick Kids outpatient unit for physical and occupational therapy.

Barb was an occupational therapist who, I realized, was one of those people you actually could call a “Guru.” Over the four years we worked directly with her (and I do mean both Georgia and I) she taught Georgia to walk, opened her up to the world and provided a source of friendship and support for me.

It not only helped me figure out how to interact with Georgia, it simply and calmly demanded my presence “on the floor” with her.

We started working with Barb at Sick Kids in a small therapy room covered in mats with a mirror on one wall. Georgia was still a toddler and loved the mirror (of course) but didn’t love having to try moving towards it. She objected, cried, yelled and agonized but Barb persevered, always smiling calmly and reassuring us, with a firm grip around both of Georgia’s ankles as she swayed and toddled and almost took a step.

The fascinating thing for me was that Georgia appeared to be in pain and to dislike the therapy, but she loved Barb. She loved seeing Barb, and she trusted Barb – or so I imagined in the way we imagine our kids connect with the world around us as we do.

As is the way with funding for kids with disabilities, we were only allocated a small “chunk” of services which quickly ran out. I asked Barb about the possibility of private therapy, scared of what would happen if we lost all access to therapy (which was inevitable) and anxious not to lose a connection with this lovely woman. And so we started therapy at Barb’s house, two mornings a week.

I remember those few years of going to Barb’s house the way one remembers a lovely respite, or vacation. I remember her lovely living room full of sun and books and therapy toys for kids. I remember Barb’s little silver rings catching the light as she gently moved Georgia through exercises to stretch and activate weak muscles. I went there on good and bad days, on days when I was frazzled, or calm.

Sometimes I simply sat back in a comfortable chair and watched, and sometimes I drifted off to sleep, to be woken up with a kind hand and a warm laugh. Some days I talked and I cried and Barb listened and smiled. She made me tea and we talked. All the while her beautiful hands constantly moved up and down on Georgia’s legs and arms, telling her how to move without speaking to her. It was warm and safe in her living room, and being there changed our lives.

During those years, while Georgia learned to walk and engage in the world – the most important and foundational therapy she ever had – we became friends. We talked. About our children (Barb had lovely young teenage boys who would say hi to Georgia, to her extreme pleasure) and our dreams for them. About our lives, our jobs, the wine we liked to drink and the tea we preferred. About our summer trips, our anger at the funding systems, and our shared a love of silver jewelry, especially rings. She talked to me about canoeing and skiing with her boys and her husband, and about her love of the outdoors. Every session ended with a caring hand on my shoulder or a hug. A small but meaningful gesture of warmth and support.

I called Barb a few years ago to catch up and see if there was a possibility of working with her again, as Georgia, now older, had a new set of physical challenges that I recognized could be helped by Barb’s approach.

She answered the phone with that warm, welcoming voice, and we reconnected as if we had just talked the day before. But she sounded weak and tired. No, she was sad to say, she couldn’t take on any clients. She was sick. Cancer. A rare, angry kind of cancer. She told me it wasn’t good, that the cancer had spread quickly. We talked about a visit when she felt stronger, after her round of chemo. She asked about Georgia, and laughed when I told her some recent stories. I felt that same generosity of spirit coming through the phone, even on a call such as this. It was like we were in her living room again.

A few months later, Barb died. Her memorial service was on a hot summer day and I couldn’t find parking for blocks and blocks. We ended up parked just down the street from her house. Walking by her house, I saw the basketball net out front as always and the sun shining through her front window into her living room. I could almost picture her sitting there on the floor, smiling up at me and working her magic. But she wasn’t.

The reason I couldn’t find parking is because of the hundreds and hundreds of people who were attending Barb’s memorial service. Her family. Those boys, now grown into handsome young men, standing with their father looking lost, but with Barb’s strength and calm. The many, many younger therapists she had influenced. The physicians who turned to her with the most difficult cases. And so, so many parents and children whose lives she had touched and changed for the better.

A community of people brought together because of one amazing, special, once-in-a-lifetime person. Everyone seemed to want to tell their Barb story. The church, overfilled, was too hot but no one left, no one wavered, no one stayed seated. It was a remarkable testimonial for a remarkable person who never stopped wanting to change the lives of kids with special needs. Not just those kids, but their families.

I can hardly think or talk about Barb without crying, still today. I never told her just how much she means to me or how influential she was on my feelings about my own daughter and her abilities. I am sad that I never told her how she changed my life in ways that no one saw or knew, while she so deftly and confidently and quietly moved Georgia into her own way of being in the world, and helped move her forward to be the young woman she is becoming. I wish Barb were here to see it. She’d smile, laugh, and flutter those pretty little silver rings on those beautiful, magical hands.

To glimpse just a little of the impact Barb had upon the world of kid with special needs, read this story about how Barb created a ballet school for little girls with special needs who want to be ballerinas.