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.