On Guilt

photo (c) 2001 Nancy Walton

 

Just a few weeks ago a new study confirmed that the benefits of breastfeeding have been overstated. After reviewing decades of research, the researchers say that previous claims to better outcomes and other advantages of breastfeeding over bottle-feeding are not true. Studies up until now, they say, have failed to capture other contextual factors leading to better or worse outcomes for kids, and have failed to acknowledge that breastfeeding may be “difficult, even untenable” for many women.

As one friend put it on Facebook: “Now that the benefits of breastfeeding shown to be overstated, what new thing will mothers feel inadequate or guilty about?”

Exactly.

It’s a dog-eat-dog world for mothers, set up in such a way to make us feel inferior in so many things we do. We’re too rushed, too angry, too busy, too distracted. Not mindful enough, not organic enough, not tech savvy enough, not zen enough. Working too much, drinking too much, nagging too much. Caring about the wrong things. Not engaged enough. Over-controlling. You didn’t sign your kids up for enough activities, or you’re over-programming them. You aren’t doing enough math homework. You don’t give her nightly baths. You forced your kid into ballet classes. You let him give up piano lessons, or you wouldn’t let him give them up.  You give your kids tap water. You cook with processed cheese. You’re a tiger mother. You’re a stay-at-home mom. You’re a working mom. Single mom. Helicopter parent. Jellyfish parent. You’re pushing too hard, or not enough.

Women endure scrutiny in many of the roles they take on but motherhood is the one role everyone feels free to label, critique, and find fault with.

I sent Georgia to her first day of summer camp two years ago with a sandwich made with completely mouldy bread. It seems impossible, but I didn’t notice. I packed a lovely green bread sandwich and sent her off for the day. The counsellors fed her from their lunches and saved the sandwich to show me at the end of the day, when I arrived five minutes late to pick her up. Sigh.

There’s plenty for mothers to feel guilty about. Moms of kids with special needs, however, develop a whole other set of guilty complexes in addition to regular, run-of-the-mill guilt. This topic interests me enough that it indirectly is one area of interest for my own academic research. There are several different kinds of this very specific guilt – and two in particular that are of interest to me.

The first I call “Looking Back Guilt” and the second I call “Looking Forward Guilt”.

“Looking Back Guilt” begins the moment you are plunged, headfirst, into the health care system because ‘something is wrong’ with your baby. After your first few assessment visits with neurologists, developmental pediatricians and geneticists, you really do end up reflecting (usually harshly) as a mother on each and every decision you made from conception until birth. Every bite of food you ate. Every sip of coffee you took, even it it was decaf. Every lost minute of sleep, every hour you worked overtime. Every time you didn’t sit down when you were tired, and every ache or pain you ignored. Every time you forgot to take your multivitamin. Every time you indulged a craving or ate a honey-dipped donut. (For me this was a daily occurrence during pregnancy.)

Did you play enough classical music for your ever-growing belly? Were your waistbands too tight? Did you do enough prenatal yoga (or too much)? Was your partner too old? Should you have waited so long to have a baby? Were you focused on the wrong things?

Never mind the questions about your childhood and adolescence, your grandfather’s grandmother, your exact intake of sugars, alcohol and green vegetables and your views on vaccination. When you’re spending hours upon hours being asked by healthcare professionals about the minutiae of your life in order to figure out ‘what went wrong’ with your child – well, it’s not difficult to see that it can trigger some guilt.

I felt this vague sense of guilt for a long time, and still do from time to time. Mostly, I’m over it. I have stopped blaming the honey-dipped donuts and stuck with the old adage that These Things Happen. One teeny, tiny little strand of DNA gets distracted and misses its place in line and well, there you go. Looking back has its place, and there are times when finding answers helps with direct care and therapy, but mostly it’s an unkind and unproductive exercise.

Not to worry though, because once a mother has let go of her “Looking Back Guilt”, there is still plenty of the “Looking Forward Guilt” to go around! Most parents of kids with special needs are told to (and trained to) put their kids through the kinds of therapies they need, sometimes on a daily basis. For some parents, like those with kids who have cystic fibrosis for example, this is life-saving therapy – therapy with an urgency that is clear and apparent. For kids like Georgia, well, she has always needed a variety of supports and therapies: none lifesaving, urgent or acute, but all incredibly important for her development and growth.

As a mom, I’ve been trained to provide speech therapy, physiotherapy, occupational therapy, academic tutoring, behavioural therapy, and social skills training. Add to this the thousands of hours of research on autism and hypotonia and developmental delay and lack of white matter, usually done in the middle of the night. Add to this the hours of phone calls to get appointments, to schedule tests, to arrange assessments. And then there are the actual days spent in clinics, labs, hospitals, and doctors’ offices.

It adds up to a lot of energy and time. Which you are more than willing to give, hoping that it makes a difference in your child’s life. But the second you are doing something not relevant to the care of your child, you instantly worry that you are not spending enough time on the right things.

Typically this panicky guilt hits when you are sitting in a hairdresser’s chair wearing a plastic cape with your wet hair half cut. Boom. Or sitting in a meeting at work that no one else has prepared for. My time, my precious time! There are stories of parents of kids with special needs who never get a haircut ever again or who quit their jobs to be full-time caregivers, therapists, researchers and advocates for their child. That was never a realistic option for me so I figured out the balance – or I aim for rebalance when I’ve gone too far in one direction.

Even so, I do feel the strain of the maternal multitasking marathon, and the inevitable guilt when I slow down my pace.

I remember many times that guilt hitting me in a particular way when I’d forget the thing-I-was-supposed-to-say when Georgia didn’t use enough words to ask for something. She would enter the room, look at the ceiling and say “milk”. I’d rejoice that she came to me, pour some milk for her, watch her drink it, and life was great. Two minutes later though I’d groan, remembering that the therapist told me I wasn’t supposed to give her anything unless she made direct eye contact, said my name, waited for me to respond, and then asked for something with a question using a full sentence.

I remember how when she was a baby I had been shown how to engage her in purposeful play, to make sure she engaged with me as well when she was on the floor with her toys. “Don’t let her just be in her own world – make it meaningful,” the therapist would tell me. “Make a story about everything. Captivate her, make the play purposeful, increase her language and her skills, build upon it…” I would get down on the floor and Georgia would be propped against something, playing in a completely unengaged, non-purposeful way. I would try all the things I could think of, but usually ended up doing one of two things: cuddling her or tickling her.

It was great at the moment – she smelled so nice and was so soft and snuggly – but afterwards, both of us out of breath from laughing, I’d be struck with a sense of lost opportunity. Tickling wasn’t going to increase her language or build her skill set; it certainly made me feel good and wow, it made her giggle wildly. This alone was amazing to experience.

Yet those times that I did what all parents do – just play in a completely random and goofy way – I would remember I was supposed to be doing therapy. I would remember an inevitable follow-up appointment was approaching soon, and what would I say?

Sorry, no new words this week but hey, we did a lot of giggling.

Mixed Signals

Nancy and Georgia - then and now

I’ve been thinking a lot about how we see our kids, and how the rest of the world sees our kids. And mostly how we see our kids as we envision them growing up, becoming adults, and living lives of their own.

I think about this in a very nebulous, general sense. And then I think about Georgia.

How do I see my kid? Well, I know fully that I don’t see her in the same way I see other 14-year-olds. I see her as much younger, due in part to her developmental delay and due in part to that inevitably natural parental attribute – to see your children always as children. To this day, the (wonderfully protective) things that my parents say to me belie the truth. While they are fully aware of the facts that (a) I’m a grown-up, closer to (*cough*) the big 5-0 than to any other landmark birthday and (b) I’m responsible for another small persons’ livelihood, they also still see me as their ‘little girl’. Anytime I tell my mother about something at work that is stressful or worrying me, her response is almost always a version of, “Well why would people be so petty and stupid? They should know better! Academics!” Translation (I think): “Why are these people bothering my kid?” I’m usually so busy trying to explain to her that the other persons’ perspectives are quite relevant and really probably justified, that I forget to appreciate the value in having that ubiquitous shield of parental protection.

When I look at Georgia, I still see her as a little kid.

Her body continues to grow up, all surfer-girlish: lithe and lean and lovely and reminding me of myself at age 14. Her hormones drive a certain kind of universal ‘leave me alone!’ adolescent reaction to almost any kind of parental intervention, from entering a room to dictating rules and regulations of the house. But there is still that part of her that gets into her bed, tired and mellow, and reaches for her Pooh Bear, embracing him with heartbreaking tenderness. And then there is the sight of her curled up, asleep, in the morning with that beautiful little face that, to me, looks no different than the face of the sleeping baby in my arms 14 years ago. These persistent and tenacious images remind me of the child who is still there in front of me, so vulnerable and needing me to be her guardian and protector. Or so I keep telling myself.

Nancy blowing bubbles as a child

It’s a case of mixed signals. I see the growing and developing person – and I know enough about human development to see where this whole thing is going – but I also see the plateaus and the tears and the giggles and the relentless lagging behind of a lovely little child.

In tights and a hoodie, she almost looks like any other 14 year-old, I think. Because when I visit Georgia’s high school,all the kids look so old. They’re hanging out, looking giant, hip and cool, well-dressed and worldly. The boys look taller and far less geeky than I teenage boys did in my day. The girls look like young women you’d be cranky that your boyfriend was talking to at a club while you were in the bathroom.

I can’t quite reconcile the vision of these kids with the vision of Georgia. In the standard early adolescent female uniform of the day (tights, layered tops) she reminds me more of a lovely seven-year-old trying to look older than a genuine peer of the 14 year olds I see.

This has all been triggered in part by a fascinating article by Ron SusKind in the New York Times called “Reaching my autistic son through Disney.” In the article, SusKind says that while these Disney movies and characters helped connect his autistic son to him, his “waking nightmare” was that his son would be “50 and watching Disney movies in the basement.” This made me stop and think a lot about what he said.

I can’t quite picture Georgia at 50, as I’m sure many parents of kids that are 14 have difficulty trying to do. But in some ways, parents of children who don’t (currently) have physical, developmental or mental health challenges don’t actually need to picture their kids at 50 or think hard about what they hope that will look like. There will be time, growth, and many other external influences that will facilitate the development of their children through adolescence, and into adulthood. And most of those kids will be independent with families of their own or circles of support around them at age 50. So picturing these kids at 50 might be just more of a fun thought experiment than a pressing need of sorts.

I see that Georgia will also have time, growth and external influences on her growing up, she already does.Additionally, she’ll very likely have a circle of support around her at 50. It just is far less predictable what that will look like.

The comment about watching Disney movies at 50 doesn’t sound like as much of a nightmare as I probably should think it does. I’m not sure if it would be the worst thing if Georgia is doing a version of what she does now, at age 50.  Many would disagree with me, and I welcome criticism that might come my way. It’s more a matter of me just putting it out there for my own contemplation and reflection. It’s very challenging for me to picture giving up the protective parental presence I feel with Georgia. It’s now hard wired, and it is strengthened by her developmental delay and childlike nature that allows me, in every way, to keep that little-kid image of her so foremost in my mind.

More complex than a selfish-desire to keep her young, my feelings are about sorting through the mixed signals and focussing on the one that is the loudest or the most compelling.

I’m sure my views on this will evolve in some meaningful way, with time and as Georgia continues to develop and grow.But don’t get me wrong: I want her to be as independent as possible. I would love for her to take the bus on her own, to shop for her own clothes, to have a kind of job that she loves, to go places and do things she wants to do on her own or with friends or even just with minimal help. I dare to sometimes think about what that would be like. It’s so incredibly far from the reality of everyday right now that it feels daring and perilous to imagine. Daring because it opens up a whole other set of possibilities to think about. Perilous because of the remarkable potential to set up high expectations that may never become reality. But I also know that, realistically, Georgia will always require lots of support and help and guidance to get through her days. I cannot imagine not being the one of the key people around her to do this nor can I ever imagine anyone else being able to “translate” her and connect with her the way I do. The bottom line: I want her to grow and develop and gain independence – as much as she is able to – but I want her to do it with me alongside, somehow, for as long as she has to.

The crux of all this is that I am fully aware that there is a very real potential there that I might hold her back in some ways, because of the way I see her, and I need to be hyperaware of that. It doesn’t much matter that, for example, my parents might still see me as that freckle-faced frizzy-haired little kid.  I am independent, I am able to take care of myself and that lovely sideways view of me hasn’t held me back or compromised my ability to achieve and grow. But my difficulty with seeing Georgia as anything other than my little kid will have an effect on how I’m able to let her grow and let go, if I allow it to.

Rationally, I know that she is growing up. I know I’ll need to let go, but I’m not sure yet what that letting go means. I’m almost envious of the father who wrote that article who has a very clear vision of his son at age 50, what he sees for him as promising and what he sees as nightmarish. I don’t have that yet, I am not able to see that with any clarity. I still just see that lovely little kid in tights and her hoodie, who needs extra help putting it on when the sleeves are turned inside out. The kid who plans on taking her teddy bear to the beach this summer and who is in high school. The kid who has begun puberty but who believes in Santa. The kid who is almost as tall as me but still needs help taking a bath. The kid who can go to prom but who still wants her mommy.

Gonna have to just keep doing some serious work sorting through those mixed signals, I guess.

Saying Goodbye to Seeku

PHOTO: NANCY WALTON

And then there was one.

 Until a few weeks ago, we had been a two-cat family for years. Walter, our newest addition, was a two-year-old rescue, fun-loving and goofy and uber-friendly. We added him to the family and quickly couldn’t remember when he wasn’t around. Seeku, our old cat, was about thirteen when Walter joined us.

About two weeks ago, at age sixteen, we took Seeku to the vet to have him put to sleep. He was suffering from cancer, and it was the kindest thing to do for a dignified old man who no longer had even a passable quality of life. But we worried about how to talk to Georgia about it.

Seeku was, as Chris pointed out, Georgia’s oldest friend. It hadn’t hit me until the prospect of the vet trip loomed – Georgia had never known life without Seeku. I actually acquired Seeku before I had Georgia, and lived with him sleeping on my stomach and chest at night for a year or two before I became pregnant; that large lumpy thing in my abdomen meant that Seeku lost his sleeping place. He moved four houses with me, has bonded with multiple house-sitters, has drooled on many a dedicated cat-petter and has hunted his share of Toronto birds and rodents.

Like many cats, he loved to be out at night. Leaving him in would result in despondent howling and worries about being accused of animal cruelty. So I would let him out, and every morning he’d be at the back door, some days proudly sitting with a mouse or a sparrow at his paws as a gift. In one house we lived in, just east of downtown, there was a local chipmunk that everyone in the neighbourhood adored. Neighbours fed him seeds and nuts, and we’d all be slightly competitive about whose backyard ‘the chippy’ visited more. When the chipmunk would come around, we would hurry Seeku into the house, and he’d watch from the living room with eyes like slits, and what we know now was a slowly-forming evil plan.

One lovely summer morning, as I sleepily opened the sliding door to let the hunter in, I noticed in passing that he seemed a bit more fluffed up and proud than usual. Looking down, I saw with horror that the night’s victim was …yes, beloved chippy. I let out a little scream and nearly dropped my coffee. Recognizing that the chipmunk was beyond saving, I gave him a proper if rushed good-bye.

I then had to smile somewhat stiffly and shrug guiltily every time a concerned neighbour asked, “Oh, have you seen old chippy? Where could he be? I’ve got some nice seeds for him!” As if summoned, Seeku would then swagger by with what I think was a triumphant cat smile on his face, and a self-satisfied swoosh of his tail.

Despite this bloodthirsty tale Seeku was, in a word, great. He was a cat with a big but reserved personality, who spent his days exploring the neighborhood and hunting and nights curled up on the bed. When he’d crawl up to sleep on my chest like a sphinx, I’d feel his paws kneading softly into my collarbones. We were like roommates, checking in once in a while to see how the other was doing, but with respect for each other’s space. Then along came Georgia.

Most cats see Georgia as a bit of a mini King Kong with grabby huge hands, lots of loud energy and absolutely no sense of ‘gentle touch’. Being faster than she is, cats can typically escape, and Georgia doesn’t mind that they run. But Seeku never did. When she was a toddler, she was very slow to toddle around and easy to escape, but he never ran away. He never seemed to be angry with her as she groped him, opened and closed his eyes for him, examined his teeth for plaque, scratched him two or three inches away from where he wanted to be scratched, or forced a hair-covered cat treat into his mouth.

He would occasionally crawl into a random cardboard box as cats are wont to do, and Georgia would join him if the box was big enough. He’d make room and create a photo op. But he never ran away.

Once when she was a baby, Seeku scratched her. He was sleeping with his head hanging over the side of the couch and she approached with stealth. Okay, not exactly stealth – more like a giggling screaming excited hyena – but he was a very heavy sleeper. Before I could cross the room she had pulled on a precious whisker and woke him from a deep sleep; out of reflex he reached out and scratched her face. Now imagine the same giggling screaming excited hyena, but substitute ‘giggly’ and ‘excited’ with ‘horrified’ and ‘hurt.’ For days, she shied away from him.

But soon enough they were cuddled up together again on the couch, with Georgia babbling through her life story while he listened.

Seeku on Georgia's lap

This was their life together. Georgia told Seeku many a secret, and let him know of her triumphs and disappointments. Each afternoon when she came through the front door she called out, with great joy, “Hey Seeku, I’m home from school!” She wouldn’t care that he rarely, if ever, raised his head to acknowledge her. They sat beside each other watching TV without a word or movement between them – just both being themselves, together. He just accepted her as she is, and I suspect she’s never realized how special he really was for that.

When we talked to Georgia about the fact that Seeku was dying from cancer and was going to be home for a while, but very sick, we weren’t sure how she’d take it. She is lucky enough to not have had to have death explained to her very much before that. The abstract notion of what death really means is hard for someone who lives very much in the moment to understand. Or so we thought.

One suggestion that she already knew something about death without us talking to her about it suggested that she’s  picked up the odd thing from her occasional visits to Sunday school with Grandpa and Grandma.  A while ago, my hair dryer broke. We realized it was broken as she was standing at the sink, wrapped in a towel post-bath, waiting for her lovely long hair to be dried. We explained to her that the blow dryer was broken.

“It’s dead? The blow dryer’s dead?”

“Yes, Georgia, the blow dryer’s dead.”

“Oh well. It’s gone to see Jesus.”

We were astounded. I mean, it was a very good blow dryer. But still.

We realized that, in terms of being uber-good parents who prepare their kids for a talk about death, we were total and complete failures. Two reasons.

First, she knows about things dying, but only in the context of inanimate objects, as we use that expression freely in an unthinkingly casual manner: Electronics that lose their charge – “The iPad died! Charge it up!” – or things that break – “Hey, the vacuum died! Better get a new one.” Not the ideal messages to give your kid about death: Once something dies, you either charge it up again or get a new one.

Second, as most of her experiences with death have been animals she knew, someone said to her that the dogs and cats and horses (Shamus, the old Walter, Charlie, Boz, Lucy the horse) she has known who have died have Gone To The Happy Hunting Grounds. Yes, you know the place. It is not easily explained but has roots to the Lakota indigenous peoples in the Great Plains. I’ve looked the phrase up a few times and it relates to the afterlife being a great green paradise where hunting and game are limitless.

In terms of Seeku, our great hunter, it was easy to make the case to Georgia that once he was gone, he was on a great plain somewhere chasing mice in the sunshine. But we worried that it was just a bit too easy and that one day, we’d have to explain that a person that she loved was there.

Then we’d have to explain that there was no visiting and that they’d never come back, and all these things would make the Happy Hunting Ground suddenly a much darker place.

seeku

So we took a deep breath, fearing the worst and opted for the straightforward approach, explaining to her that Seeku was sick and that he was dying.

 “He’ll feel better tomorrow?”

“No, Georgia, he won’t feel better. He’s very sick and he’s going to die.”

“We’ll be sad?”

“Yes, we’ll be sad.”

“Oh poor old Seeku.”

“Yes, poor old guy.”

“He’ll go to the happy hunting ground?”

We looked at each other, worried. “Well, yes, he will.”

“With Shamus and the old Walter and Charlie and Boz and Lucy?”

“Yes, with Shamus and the old Walter and Charlie and Boz and Lucy.”

“He’ll go in the blue car?”

We look at each other, confounded. “Wellll, yes. We’ll take him in the car to someone who knows the way there.”

“Okay.”

And off she went to play.

We looked at each other, this time in complete surprise.

At the end of the day we realized that Georgia, in her own way, has made some pretty complicated connections between a whole bunch of belief systems and experiences and random sayings, and she’s far better prepared than we are to deal with death.

And of course, she still has Walter. She’s been coming home after school the last few weeks, bursting through the front door and yelling out with joy, “Hey Walter, I’m home from school!”

The Reason We Translate

So I wrote and rewrote a whole column for this week. And then I scrapped it.

Around midnight, what it was that I really wanted to write about came to me. I got into bed and noticed the book The Reason I Jump beside the bed. I’ve read this book, have given it to others and recommended it to many. Like many people who have reviewed the book online, I found it beautiful, interesting and fascinating to read.

But unlike many of those same reviewers, I didn’t find it particularly helpful.

It didn’t help me understand the reason Georgia barks, repeats the same questions for years or needs help in the very specific ways that she does. Many web reviewers talk about how helpful the book is, in the same way one might talk about a guidebook for a foreign city or a legend on a particularly complex map.

But I simply was unable to take the things I learned about Naoki Higashida and apply them to Georgia. A few things struck me as I read the book, but they were more like a familiar scent twigging a vague memory than a concrete comparison to Georgia’s behaviours.

For anyone who hasn’t yet read the book, it is a translation of the thoughts of a then-nonverbal middle school boy with severe autism. Nagoki Higashida spelled them out, literally and painstakingly through the use of an alphabet grid, in order to answer the questions people most frequently had about his behaviours. Higashida’s ideas are translated by KA Yoshida, who’s married to David Mitchell,  the author of Cloud Atlas and the foreword to The Reason I Jump.

Many people have referred to the book as an ‘opening up’ or ‘accessing’ of autism, and while that’s great in spirit, I worry about that claim for two reasons. First, it dilutes the pure value of the narrative in the book. The prose is beautiful, sad and challenging. To say that it fulfills some kind of generic purpose – to help the rest of us ‘understand’ autism – is really giving it far less value than the text deserves. Second, it assumes that all one needs is a kind of guidebook for autism and voilà, all those people with autism are all figured out.

The reason I translate: a photograph of Georgia, the mystery girl

I suspect that a travel guide for Italy won’t help you in the mountains of Nepal just as one account of autism can’t possibly help you understand ‘what it’s like’ to have autism. One single guidebook for autism will only ever give you insight into one single person’s experience.

When Georgia was smaller, she was not what you’d call ‘purposefully verbal.’ In other words, she said a lot of stuff but it wasn’t tied to a purpose, like getting what she wanted or communicating something in a determined way. She’d be outside on a beautiful day and look around at the trees and say, “Bells.” She would enter a room, look at the ceiling and say, “Stove”.

I spent hours and days, scratching my head and trying to figure her out. Bells, bells, bells. Stove, stove, stove. I’d rack my brain trying to think what it might mean. I’d ask her simple questions, show her pictures of stoves, take her into the kitchen and talk about cooking and heat and appliances.

She was, for many years, a true mystery to me. For two or three years she spent her days being a ‘mellow’ baby, but would sometimes wake up at night, screaming and inconsolable. I’d be awake with her for hours, doing everything I could think of, to calm the child who could not be soothed. She wasn’t sick or hungry or feverish. She didn’t seem scared or upset. But she cried and cried.

Over time, I labeled this behaviour. I decided that it must be frustration. I concluded that she was incredibly frustrated with not being able to communicate in order to get what she needed during the day, and the result was a build-up of frustration that came out in the middle of the night. So the next time she woke up screaming and crying, I reacted to what I was calling her frustration.

The label didn’t necessarily help me to stop her crying but it did help me to cope with the crying. I didn’t lose my patience as easily. I could find that place inside myself that was calm, even in the midst of my own fatigue and exasperation. It helped me to put a label that I could understand onto behaviours that I could not, for the life of me, figure out or make better in any appreciable way.

When she was older, she was enrolled for a few years in a wonderful private school for kids with autism and developmental disorders. The founder of the school, Simone, talked to me about the dangers of translating Georgia’s behaviours in order to make them understandable to me.

When she first talked to me about this, I remember feeling immediately defensive. While I may have appeared to be focused on what she was saying, I was doing that whole “uh huh…” thing inside my head. It was one of those moments (we’ve all had them) when you’re listening to someone whom you know, deep down, is 100% right, but you need to get all your inner talk done before you can really listen. That inner talk is the stuff you’ve been telling yourself for so long, and that you know isn’t correct – but, dammit, it makes you feel better to tell it to yourself. So there.

My inner talk was telling me that she was wrong and that I wasn’t translating Georgia’s behaviours into something else – I was ‘understanding’ Georgia! And I was the one who knew Georgia best. Even though I couldn’t ask Georgia to tell me what she was thinking, I knew her. I knew what she was feeling and I knew it best. There wasn’t anything but an accurate reflection of what she really felt. Uh huh. Cue eye roll at self.

At the time, Simone and I were talking about how Georgia would repeat the same question to me, over and over. I found this most difficult in the car, with just her eyes and baseball cap visible to me in the rear view mirror, repeating the same question. No form of distraction would work, nor could any radio station stop the questioning. Driving home after a long, tiring day of work, I would listen to the questioning begin and continue all the way home. If we were going somewhere different, the volume and speed of repetition would increase. It was a test of my patience.

I decided that this was anxiety. Anxiety about something: the trip, the car ride, the destination. When I talked to Simone, she gently warned me against labelling this as something with a specific quality or emotion. She suggested I just think about the questions as information, as Georgia’s attempt to engage in meaningful conversation. It was just information. The interaction was just conversation.

These were still labels on the behaviour, yes, but without the attempt to fit them into a construct I called anxiety orfrustration.

This was one of the most valuable but most difficult things to hear — and process, and try to remember. Rather than labelling her demand for an hour-by-hour schedule as agitation or worry, I need to remember that this was not something that necessarily required translation.

But the desire to translate Georgia’s behaviours into something comprehensible is still there. Her ever-improving communication skills mean that translations are less often necessary. “I’m sooooo mad!” and “I hate this too much!” are easy-to-understand statements, especially when accompanied by teenage posture and attitude. I’m thrilled she’s found a crystal clear way to voice her feelings and needs — even when it’s not what I want to hear. But she remains a complete enigma to me at times, and some days I’d love a guidebook to shepherd me through the mystery that is Georgia.

Sometimes the mystery that is Georgia is simply delightful.

I know now that when she used to look up into the trees and say “bells,” she was looking for wind chimes. I know now how much she loves that sound, and that she can spot the tiniest dollar store glass wind chimes hanging on a stranger’s porch as we drive. She points them out and smiles.

The reason I translate: the bells that Georgia was talking about, shell wind chime in the back yard

We have a backyard filled with wind chimes of all types: bamboo, shells, wood, and aluminum, chimes with spinning birds and tiny crystals, with wind gongs and eclectic shapes. On a warm summer afternoon, you’ll find her sitting on the swing, books spread around her, digging her toes into the grass to make the swing go and listening to the collection of wind chimes sounding softly in the warm breeze.

When we go outside for a walk, she’ll still look up into the trees or on a porch and say wistfully, “bells.” I know that she’s heard a tiny sound somewhere close by. When we both spot them, we smile at each other with something I’m pretty sure is just like understanding.

In Between Days

In between days: Georgia has a very big and very warm hat

I know early adolescence is a difficult, challenging and complex time.

For the adolescents and the parents, that is. I never imagined that the health care system would find the whole kid-with-a-developmental-delay-and-autism entering adolescence such a huge challenge. But apparently, it does. I haven’t quite figured out how to maneuver through the place we’re in, in terms of health care for Georgia. Let me fill you in.

I fully realize that two things are true.

First, I realize that Georgia, while not ill per se, has confounded the health care system since she sputtered her way into it, all arms and legs, fourteen years ago.

As a baby she was low tone, but highly alert. She was mellow but strong-willed. She was quiet but when she cried, everyone heard her. Her scores on tests were good one day, and then the next day bad. The NICU pediatrician-on-call when Georgia was born spent the next week or so getting to know her little quirks, while she simply mystified and elated the rest of us.

That same pediatrician invited me to bring her to his practice once we were discharged. Secretly, I had hoped for that. In addition to being a smart, warm and personable physician who handled my baby the way a very experienced midwife would, he caught me the day after Georgia was born at what was, for me, a very bad moment and handled it with aplomb, with a mixture of Downton Abbey-style gentlemanliness, compassion and humour.

I had gotten out of bed to go to the bathroom and had, in the mirror, inadvertently caught sight of my back through the slit in my gown. Horrified, I froze on the spot. I believe I emitted a loud audible gasp. My entire back (and yes, all the way down from there) was covered in bright red angry scratches — as if I had been dragged along a bed of nails. Given that I had slept very little in four days, my reaction was to begin sobbing. The kind of loud, sloppy, not Oscar-worthy sobbing that you hope no one will witness. Without hesitation, he came into the bathroom to find out what was the matter and (having no dignity left) I simply and silently lifted my gown to show him my back (and oh, dear lord, the rest of me). I don’t remember exactly what he said, but he didn’t run away screaming, which was a good start. He also didn’t run to get the nurse — what many physicians, I suspect, would have done in the same situation. He looked at the marks, and told me that they were just stretch marks and that they would go away, probably completely.

He was right of course, they were — and they did. He made a joke, I don’t remember what – something lighthearted and a bit wry – but I remember really not minding that at all. He also (yes, he did) gave me a hug and brought me a cup of tea and … my baby.

a photograph of baby Georgia

And he stayed and talked to me. At that point, I would have taken Georgia to his practice if it was 10 hours away, believe me.

But I digress.

Because going back to the adolescents and health care problem, the second thing I realize is that all early adolescents are in a murky gray zone when it comes to health care, not just kids with special needs. For kids at this age, their evolving autonomy and yearning for independence means the paternalistic approach and cutesy teddy bear murals of a pediatrician aren’t quite right, but an adult-focused family doctor or internist might not meet their complicated developmental needs. Halfway between child and grown-up, their needs are tough to accommodate well.

And it seems that the health care system isn’t sure what to do with Georgia right now. That still-fabulous pediatrician has followed her and has worked with specialists to guide her through childhood, with lots of referrals for information and support.  Realistically though, there isn’t a lot that can be done for Georgia during routine pediatric checks; she needs a different kind of continuity and support now.  In some ways, she’s had that at places like Sick Kids and Holland Bloorview, but she is now at the age when even they scratch their heads to figure out ‘what she needs.’

So we’re in the midst of a conundrum. Let me explain. The developmental pediatrician at Holland Bloorview who we’ve seen since Georgia was three is no longer seeing outpatients. We haven’t seen her in about four years, since she referred us to a specialist for Georgia’s problem at that time: worsening dystonia (abnormal walking). About three years ago, Georgia was literally tripping over her extremely turned-in feet. The specialist was fabulous – lovely and smart. She’d take her own shoes off to walk with Georgia barefoot down the long hallway, in order to observe her walking. They’d chat and come back hand in hand, giggling.  She asked my opinion about everything and we collaborated on figuring out what was going on with Georgia.

Four years, two drug trials, one lumbar puncture and a bunch of rare-metabolic-disease-tests-at-the-NIH-in-Atlanta later, we are no closer to figuring out what is causing her dystonia or how to ‘fix it’.

The long-term prognosis is anyone’s guess: it may stay the same, get worse or it may get better. Yep, we’re out of options to explain or treat the dystonia. So we do what health care practitioners have done since the beginning of time: We watch it. And since we’re out of options, we’re also now out of time with this specialist.

So in September, we asked for an appointment with our original developmental pediatrician. Now remember, her developmental pediatrician is no longer seeing outpatients. So we’re SOL, as they say (well maybe the kids say something else but SOL is still in urbandictionary.com so I feel okay about saying it): No physician, no appointment and no options.

I’m emailing the outpatient clinic nurse and trying to be patient and calm. But it’s tough. And suddenly, two things are happening. First, I’m being told that Georgia needs something different based on ‘her current needs’ but they have ‘nothing to offer’. Wow, really? Second, I’m feeling we’re being far too easily abandoned by an institution that has provided care for most of Georgia’s life — without any safety net in place.

The tough part is this: I understand some of these problems from an academic perspective. But when you deal with them personally, it’s tougher. I’ve spent a lot of time with students lecturing passionately about the lack of sustainability and continuity in the current health care system. About the fact that dogged chronic care and tedious health promotion and rehabilitation take a back seat to episodic acute care. Break a leg? It’ll get X-rayed and diagnosed and set. You’ll get follow-up at a fracture clinic and maybe physiotherapy. Have autism, a case of adolescence and a funny way of walking? No one’s quite sure what to do with you.

We persevere. We’ve had the good fortune to have encountered some wonderful physicians, nurses and therapists.  But it’s sad to lose them as providers of care, without new, just-as-wonderful people in place.

I’ve always wanted good care for Georgia. We’ve benefitted from it and I would like it to continue. Maybe that’s unrealistic, but at least I know it’s possible.

I know that kind of physician is out there. The kind of physician who will see us through it all, who will share a joke, bring me a cup of tea and my cute little baby. The kind of physician who will hold that kid’s hand and help her walk barefoot down the hospital corridor. The kind of physician who will talk to me, and do everything possible to figure out this apparently impossible adolescent.

Fork on the Floor – Memes Mean So Much More

Dropped Fork

According to Richard Dawkins, who first coined the word meme in 1976, the term is derived from the Greek word mimëma, meaning ‘something imitated.’ Memes can be dispersed vertically from parents to children, or horizontally spread through means like the media and peers. And of course, memes can be spread via a 14-year-old for whom repetition and imitation are basic needs.

You’ve heard about Georgia’s love of toilets left on the street for garbage pick-up and her deep affection for a toppled-over chair in any setting. She doesn’t just find these things sort of funny — she finds them limitlessly funny. She takes them in and carries them with her. Not just for a few minutes or hours or days. No, I’m talking years here. Years.

They become part of her, and her ongoing schtick.  She adds her own text to her memes and they become living things.

About a year ago at Georgia’s previous school, someone dropped a fork in the cafeteria. We think it was Finnegan, but I’m not convinced (more on this later). But you know all about a fork dropping in a crowded cafeteria. It happens. You’ve seen it. Maybe you’ve even lived it. Utensils and plates of food placed precariously on a slippery cafeteria tray while you manoeuvre around tables and chairs to find a place. One slight lean to the left or right and the balance you carefully achieved is destroyed and your plate veers sideways and something (yes, perhaps your fork) plummets to the ground with an ominous clang.

That noise – the sound of something being dropped — is like music to Georgia’s ears. For her, it’s a teaser for a wonderful slapstick film or the whisper of suggestion that total, utterly fabulous chaos may be imminent.

This fork — the fork that was dropped a year ago — lives on in the discourse of our home. It only takes five minutes after Georgia has woken up for her to look at me earnestly while putting on her sock and whispering, “Finnegan dropped the fork!” This is followed by a bout of choking laughter.

Georgia is now at a new school without Finnegan, and plenty has happened in her life since then. And yet, the dropped fork is as fresh in her mind as the breakfast you’ve just eaten. She has taken the meme and made it a part of our daily lives. And oh, yes — she’s worked it. She enters most rooms proclaiming, “Hey, Finnegan dropped a fork!!!” and then laughing a Dr. Evil kind of laugh.

The original fork report associated the dropped fork with Finnegan. But in the ensuing year, as she walks through the house laughing and mumbling away to whoever is listening, she has named almost everyone she knows as the fork-dropper.

In her mind, Grandpa or the Ossington bus driver dropping the fork is just as funny as Finnegan or even “a total stranger” (her newest addition to the repertoire). As you know, we’re learning about strangers and she’s managed to figure out that although we know far less about strangers than our friends and family, we can imagine that they have the timelessly sublime ability to Drop. A. Fork.

We've Got Forks: a meme, cherished. Here is Georgia with a collection of cutlery

She’s added a few new bits and pieces of text to the original meme. It’s not just that, “Finnegan dropped a fork!” but also, “…It wasn’t his felt.” I wondered why fabric craft supplies were now part of the story, and then figured it out. I suspect her lovely teacher Dave decided to address all the dropped forks directly, and added the bit about how accidents aren’t anyone’s fault.

Georgia is always on the lookout for new items that have been dropped that can be substituted.

In her communication book last week, Dave reported: “Georgia found it difficult to focus today. She was unmotivated this morning until she helped with the recycling. A can was dropped.” Oh, Dave — I feel your pain. Georgia came home that night like someone who won the lottery. With a bright face, she yelled out (before the school bus doors even opened): “A can dropped!!!”

Toppling to the ground, echoing with tinny goodness on the hard school floor, the dropped can brought yet another dimension to her meme. Forks, spoons, cups, cans — it’s all potential fodder! Even with our opposable thumbs, we humans are a clumsy species and Georgia is on the watch for it.

I silently dropped a cotton ball the other day (no noise equals no fun, right?) but no, I was wrong. She was bent over with gut-wrenching laughter and found herself completely unable to focus on anything else for a ridiculously long time.

I estimate that I’ve spent probably 30 hours of the last year of my life talking about the many versions of a dropped fork (and about 10 more hours telling her firmly that I do not want to talk about the dropped fork anymore). In the world of memes, though, I’ve decided that’s maybe not so bad. I can easily find 200 hours of “lolcats” on one website. I challenge you to admit just how many hours you’ve spent on pictures and videos of Grumpy Cat. And yes, hey girl, you know that it’s absolutely okay with me that you have allocated hours of your precious workday reading Ryan Gosling memes.

Grumpy Cat?

The fork meme lives on at our house. And I admit, we’re just a little more careful that we used to be when moving utensils from the dishwasher to the drawer. And when it happens, we roll our eyes and feign stern looks at the inevitable discussion of the dropped fork. We try (and fail) to distract her. We direct conversation elsewhere.

All fruitless efforts. There will always be another dropped fork, another dropped can, another toppled-over chair. The first sighting of a toppled-over chair was four years ago at our previous house. We still have conversations about the “upside-down chair at the old house,” and it’s as fresh as ever. We have pictures of chairs in her life that have been toppled over placed in photo albums and carefully archived on iPads. No fork pictures yet — but never say never.

I figure that one day, as a mind-blowing birthday present, we should stage a performance piece and film it. Here’s the scene: A dropped fork lands, along with a can, on a toppled-over chair placed beside a toilet on the street waiting for garbage pick-up.

Best. Gift. Ever.

Almost-Resolutions and Luge Rides

Georgia and Nancy

I’ve always been one of those people who resists making New Year’s resolutions. But towards the end of December, I inevitably start to think about what I’ll do better or more of or less of in the coming year. I tend not to call these resolutions or write them down, so I consider them almost-resolutions. Not writing them down makes it easier to, you know, change them on the fly … “Oh, I was avoiding carbs? Well, I meant only weekdays. The weekend is totally fine to have chips and dip for dinner!” or “I was going to run 10 kilometres a day? Oh no, no, not on cold days! Of course not!” You know what I mean. You’ve been there.

Since I had Georgia, I tend to feel more reflective at the end of each year, thinking about both her progression in the world and the evolution of our relationship. As mothers and adolescent daughters go, we have a good connection. Sure, there’s drama and rebellion on her part and some nagging and frustration on mine. But most days with Georgia are pretty easy and we like to spend time together. What would I like to change and make better?

First, I’d like to spend more focused time with Georgia. Of course, that means doing so on her terms – which is not unlike most kids and parents. But we spend a lot of time parallel to each other, rather than engaged with each other. Which is actually pretty okay. She’s happy to play in her space, the basement, while I work upstairs. She comes up and asks about what I’m doing, or watches for a while. I go downstairs to share a snack with her.

But typically we exist quite peacefully and beside each other. She actually likes me to literally be beside her (the invitation is always “come sit beside me, Mommy”) for certain television shows — after which I am instructed to leave immediately. We do lots of things together, we eat meals together, we go out places and on vacations and have plenty of time together doing the things that she needs help with, like dressing and bathing and braiding hair. But much of our time is spent in parallel.

There’s a lot of discussion of the notion of parallel play in kids with autism: where kids are happiest simply playing alongside other kids. Georgia did that often. She’d be thrilled to be with other children, but never engaged them in chatter or play. She’d watch them intently, laugh when they laughed (even if she didn’t understand the joke), repeat things they were saying and comment to herself about what she was seeing. She also developed a habit of giving other kids adult-style instructions and clear safety advice when they were playing: “Hey kids, be careful on that swing!” Kids who knew her never seemed bothered by it, but she still occasionally gets looks when she yells at 10-year-olds on the playground: “Hey boys, please be careful! No running!!!”

The fact that she is still a ‘parallel player’ is not surprising. I think that this year though I’m going to push myself on her a bit more, even just to be beside her for more hours of the day. Sit beside her while she watches one of her thousands of self-made short videos on her iPad. Watch a movie beside her on the couch every weekend. As long as I come bearing popcorn with butter and salt, she’ll let me stay.

The other thing I’ve been thinking about is the past year: it felt very reflective. Moving Georgia from grade eight into high school was a monumental transition for me. (For her, apparently, it was pretty damn easy.) It made me even more reflective about who Georgia is and what she’ll become. The trajectory of high school is meant to build a solid foundation for what’s to come, and the transformation from ‘kid’ to ‘young adult’ is a formative one. Facing that with Georgia, I’ve found it admittedly bittersweet and it’s made me engage in some serious soul searching. In 2013, that is.

It may sound like an odd almost-resolution but I’d like to do far less soul-searching in 2014. I don’t mean that I want to be more superficial. It means that I’d like to just worry a little less about the big things. I’m aware that the way I’m wired means I worry about the big things all the time; the danger is not only missing the really good, small things but the ease with which I can slip into “The Abyss” — the place my most serious worrying takes place.

It’s the place where I worry about what will happen to Georgia when I’m no longer around. Where I worry about how she’ll find happiness as she gets older or how she’ll be treated in what’s a pretty cruel world. It’s easy to go down intoThe Abyss (trust me, middle age hormones and Apple holiday commercials make the plunge far too easy). It can be as easy as hurdling down an icy luge. It’s cold and fast and dangerous and you reach the bottom so quickly, you hardly see it coming. It leaves you breathless.

scroogeblurayGhost

Worrying about the big things often means taking that icy luge trip into a dark and cold place, a place where I ruminate on things yet to come. It’s easy to get out of and I only linger there occasionally, but still. Like Ebenezer Scrooge, I see that those things I fear may be yet to come can actually be altered by me.

In 2014, I’d like to not visit The Abyss so much. I suspect all parents have their own Abyss – the place where their deepest worries about their children take them. And I suspect that their experience is similar to mine. Worrying can take you there on a particularly grim day or when an important life transition is happening or other wonderful days when middle-aged hormones make you sob at dog food commercials with soft piano music.

It’s the reality of raising children: You worry. But as my mother says, so much of what we worry about never happens. And much of what I worry about are things that I can avoid happening. I’m not sure exactly how, at the moment, but I’m up to the challenge. The first tiny step is to probably live a little more in the present. Georgia, a true master of living-in-the-moment, is surely the one to help me with this.

So what almost-resolutions am I making this year? Well, I think I am happy to simply anticipate a year to come of spending less time on the icy luge ride and more time in the moment beside that fabulous kid, eating popcorn with plenty of salt and butter.

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