It’s been a while.
Recently, I listened to a mother of a 15 year old by with autism on CBC Radio talk about the stress of experiencing her son’s serious meltdown in a mall – as crowds gathered to record the scene with their mobile devices and, thank goodness, one smart and intuitive security guard stepped in to help – and empathize. It was timely, listening to this, for me. And as I thought about it even more on the College streetcar on my way into work, I decided, okay, maybe I really can get up the nerve to write about this. I am not the only mother experiencing this.
For my frequent flyer readers, it’s perfectly okay for you to say that you think you know Georgia a little bit. You do! You know her sweetness, her laughing presence, her love of a good joke or a discarded toilet on the street, the twinkle in her eye. Her lovely and loveable self. We’ve often said that Georgia’s default setting is super-happy, and have reflected on how really fortunate we are that is the case.
But this year, something has changed. And for the life of me, I don’t know what, but I am figuring it out, ever so slowly. Part of my difficulty with writing about this is just simply admitting that my Georgia – who I have held so close to me – is having difficulties. That, together, we are having difficulties. The kind of difficulties that we imagine, with great empathy, belong only to other parents. Nothing insurmountable. Nothing devastating. But a difficulty that flavours our days and tests our patience, that left unaddressed will make life for Georgia- and for all around her – much more difficult.
A few weeks ago on a typical school morning, Georgia wanted her bird print tights. They were in the wash and she was offered the second best pair of tights: the ones with the flowers that she loved the week before.
No. No. No, no, no. Not those tights. No, no, no, no, no.
Strong preferences over the little things that most of us make with very casual daily decision-making processes – like the clothing we wear – have become a new battleground in our house. Tights and hoodies are the weapons and Georgia is well-armed. On a typical day, she will most definitely want the hoodie that is too heavy or too light for the weather or the one that is filthy in the laundry, or hanging wet after washing. In other words, any of the other six she could or should wear, are not good enough. She’s taken now to wearing one and carrying around her two next choices – just so I can’t get my hands on them to wash.
On this particular morning however, the impassioned objections to flower print tights (that were, ironically, the only solution the week before that when they were in the wash and unavailable) culminated in angry bursts of shouting and vigorous arm flapping while I was helping her get dressed. The same kind of thing we’ve been experiencing many mornings. But this day produced a different result: a Georgia fist tightly formed and lacking intent, with unexpected strength and indomitable emotion, flew into my left eye socket.
My eyes watered.
I watched little stars fly across my field of vision.
This weekend, we took Georgia to a Blue Jays game. It remains one of her favourite things to do: get a few nosebleed seats, a well positioned bag of ballpark popcorn between us, a cold apple juice and some overpriced beers for the grown ups. Add some sun and an open Dome, and there you have it, a perfect Saturday afternoon. Almost perfect, that is.
She loved the game. She cheered for the home team and booed the visitors. She watched the clock carefully, shook what she has for the Dance Cam and looked through the stands intensely to locate the mascot. She was done (you know – done) by the bottom of the sixth. We insisted she stay until the seventh inning stretch as we know she would miss singing Take Me Out To The Ballgame, but that might, in reflection, have been pushing it.
On the way out, we told her she could buy a team shirt. Wonderfully and horribly, they all have numbers on the back. She couldn’t decide between 55 and 10. Back and forth. Back and forth. Then “both”. Then 10. No, 55. No, 55. No, 55. Okay, 10. No, really,10. Then silence. Then gesturing. Then looking away. Then wringing her hands. Biting her lip. With only just mildly rising worry, I decided for her and bought number 10.
I turned my back for a few seconds to pay, to be startled by a blood curdling screaming and foot stamping. Shocked, I turned to witness Georgia – yes, my Georgia – in the middle of the open area screaming, sobbing, begging for number 55. I paid, and gulped down my own anxiety. We held her close to us and she continued to cry, sob, scream, tripping on her own feet, oblivious to the stares, as we pulled her to the exit, talking to her, trying to get through the scattering of people distracted from their baseball reverie, their phones, their conversations. She writhed around with frustration in our hold as her incredibly loud bursts of screaming echoed through the stadium. Amazing how well that stadium echoes. Good for Madonna on concert night, bad for us.
Small crowds turned, looked, stared. A gaggle of twenty-something girls actually looked up from their phones. All to see what sounded like a horrible kidnapping gone wrong. What they saw, instead, was a gawky, awkward, stumbling sobbing teenager pulling away from her mortified parents’ hold. The security guard directed us kindly but firmly to the elevator and we found ourselves with an accompanying staff member, obviously not trained in dealing with this kind of situation but clearly well trained in intense unfriendly staring.
By the time Georgia left the Dome, she was happy again. Like a massive Georgia switch had been pulled, she was looking up at the CN Tower and chatting away. I felt what I can only describe as vaguely shell-shocked, and slightly numb. As a mother, I felt clumsy and inept. As a bystander, I felt like I had witnessed some awful secret, something I couldn’t unknow.
The last six months and these occasional but somewhat more frequent behaviours have involved a kind of stress I haven’t been able to articulate to anyone accurately.
Georgia has changed in the last six months. Not all the time, and not every day. And in many ways, she has changed in such positive ways. She remains her easy quick-to-smile self. Her singing out loud so earnestly self. Her sushi-enjoying, pizza-inhaling and life loving happy self. But her negative emotional reactions to the tiniest things have increased markedly in both intensity and frequency. Every little thing, it seems – on some days – sets her off.
And no, it isn’t just puberty – although I know that adolescence and autism can be a mean mix. When we first mentioned this to her doctor, she did say, “Well it’s part of being a teenager – it’s quite normal..”. The other kind of so-called comforting phrase – the frequently heard, “Oh, don’t worry, it’s just a phase” expression scares me far more than it reassures me. It suggests a kind of interminable state of being and an almost outright denial of the Groundhog Day kind of existence these behaviours, not addressed, can pull you into. It also suggests we can just ignore these behaviours until they pass, like a spat of bad weather. Lots of smart and intuitive people have told me that they can’t believe that she would behave in the ways I’ve described. “Oh no, not our Georgia!” Over the last six months, her teacher, her tutor and her babysitter have now, for the first time, witnessed and experienced this new behaviour. In honestly, I’ve felt a perverse sense of giddy relief at their incredulous recounting of the behaviours to me.
“See?” I wanted to say, “See?”
I think that much of it has to do with choice. Choice is, a wise person told me, pretty scary for some kids with autism. It’s so incredibly counterintuitive to think about that within the whole wanting-to-be-a-good-parent-thing though.
As our kids get older, we want them to choose, to have preferences, to have things that bring pleasure and are rewarding. And then, as a parent, we get to do that wonderful thing where we can provide something to our child that we know she’ll love. That is one of the privileges of parenting: to see inside this lovely little person a bit more than the rest of the world, and know what makes her tick. And most of all, know what dinner you can make after she’s had a long day that will make her happy. Know what her favourite band is and surprise her with tickets. Take her to the ball game on a Saturday afternoon and buy her a t-shirt. Make sure her favourite cookies are in the cupboard.
Choices, however, can be a source of anxiety. And consequences of choices are way harder to sort out. I mean, I still haven’t quite come to terms with the whole “Nancy, your choices result in consequences” concept in my own life (that’s a whole other kind of blog topic), so for Georgia it must be so much tougher.
It takes all of my strength to ask humbly for help – and the wonderfully frustrating part of it is that, most people don’t really believe me when I ask for help. “Oh no, you’re such a good mother! It will all be fine!” And then I retreat, smile, mumble and hit autopilot as many parents do, I suspect. And worrying secretly – or not so secretly – that I have no idea what to do as a parent right now, that I’m barely keeping it together and that I do not have the luxury of a few years to just take time to figure it all out.
We finally told Georgia’s doctor that we do need help. I drafted an email in three minutes, didn’t bother to reread it and I just hit send. We’re two PhDs in our house, one a health care professional, and we can search the literature for autism, aggression and adolescence but we have no idea how to cope with this vast rumbling loud unhappiness driven at us from this person we love so much.
My pithy but pointed email to her doctor, who has become a friend of sorts, wasn’t just a whiny complaint about my inability to get her dressed without a fight. It was not a casual request for a brochure or some journal articles. It was a hope we don’t start each day in tears. That every other night doesn’t end with anger and frustration – and that there might be a way for us to learn to let her make just a few choices and cope with the consequences of those choices in a way that we can all live with. It was an expression of a deeply held worry that we are going down a road that leads us to a place we don’t want to be. She answered almost immediately, didn’t tell me “it’s just hormones!” and gave us a referral to a behaviour and communication therapist who we’ll try out and see what happens. And offered to see us the same day, if it would help.
Tonight, on a hot muggy post-rain evening, Georgia came downstairs wearing two winter-weight hoodies over two t-shirts and carrying two more hoodies in her arms, while wearing a goalie helmet and a toy NASA space helmet firmly on her right leg (yes, on her leg). I ignored all of this – even though one hoodie was still drip-drying on me from the wash as she walked by. I simply rolled my eyes to myself a little and smiled at her calmly. In spite of it all, I kind of liked the whole outfit. She had changed into her filthy flowered tights and stopped by my chair – surprise! – to make fluttery fish lips to kiss me on the cheek as she walked by.
Oh, she still likes me!
Today was a good day. A very good day. I’ll take them as they come – soaking wet hoodies, goalie helmets and all – thank you very much.