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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