Forgive My Ranting, But Please Stop Staring!

forgive my ranting but would you please stop staring? Image of Jack Nicholson from The Shining

I wrote and rewrote this column, and then read and reread it – and guess what? I think I may actually be having a small rant! So, consider that a bit of a disclaimer and a warning.

Let me first tell you about two recent outings with Georgia.

1. A few nights ago we went to the grocery store much later than we normally would. We stopped in on our way home from an evening event – something we don’t generally do – but hey, we needed cereal and milk. Stuff happens. Of course, when you’re dragging Georgia along with you, she is far less nonchalant. Her reactions appear, from the outside, to be worry or anxiety. Really, it’s just a way for her to figure out what’s going on. We’re doing something different from our usual routine, and she simply wants to know if the rest of the night is going to be equally as askew.

Her way of doing this? Repeating questions and statements loudly. Loud Repetitive Talking.

Picture us in the dairy section. She’s in her Marley T-shirt and jeans, pushing the cart with me. I’m still in work clothes and looking the typical Thursday night working mom: dark circles under eyes, slightly frazzled, cartoonish hair.

She’s repeating over and over and over loudly: “Nearly done, right? We’re nearrrrrly done! Nearrrrly done. Yep, we’re nearrrrrly done!”

Now picture the shoppers around us. One woman abandons her shopping cart to walk down the dairy aisle to get a better look at Georgia. Others pass by (looking for longer than is … let’s just say, polite) with furled brows and grouchy expressions. People peer across soup can displays and glare at us over piles of vegetables to check out who was daring enough interrupt the otherwise obviously much-sought-after pleasant muzak’ed ambience of the urban windowless sterile grocery store with Loud Repetitive Talking. It’s the stuff of horror movies.

Forget chainsaw-wielding dolls! Let’s make horror movies super scary and add Loud Repetitive Talking!

*cue ear-piercing scream*

STOP STARING

2. Last week Georgia and I decided to spend a rainy Saturday at the movies. The theatre is on the fourth floor so we used the elevator. When the movie ended, Georgia really (really really) wanted to know what was happening next, as is her way. Were we going to the car? What would come after that? There was also some disappointment that the movie was over and the popcorn was all eaten, so we talked about that. You know, Loud Repetitive Talking.

This is normal for us. I’m used to this kind of reaction from her; I expect it and have developed ways to (try to) deal with it and not lose my patience. I engage her in other kinds of conversation and less repetition. But guess what? Sometimes this seemingly ceaseless stream of Loud Repetitive Talking happens.

And it happens in public. Shocking, I know. If you ever hang out with Georgia it is very likely you’ll experience this. And you know what? It’s okay. It’s simply okay. It isn’t scary nor is it cause for alarm.

On this particular rainy Saturday it wasn’t so okay. We were in a very crowded elevator with about ten other people. Silent people. Rainy-day, not-happy-looking people. All standing stiffly and trying not to touch each other and occasionally shuffling in their two square inches of space, the way people do on elevators, in complete denial that their elbow is resting in someone else’s midriff. Cue Georgia, more than a few shades too loud, repeating tenaciously and just slightly melodically, “The movie’s allll done. It’s all done now. All done. The movie’s all done, right Mommy? It’s all done, right!? The movie’s alllll done. Done, right?”

It’s absolutely amazing how fast twenty eyes can simultaneously lock on a kid repeating herself. In a split second, we were locked in the collective unfriendly glare of the crowd. I was surprised I didn’t hear a ‘click’ as their eyes shifted into place.

The elevator was slow. Slow as in I-feel-as-if-I-lived-a-lifetime-and-then-some slow. I met most of the glares and tried to match them, but you know what? I was tired. I was simply too tired to either open my mouth and try to educate the crowd [“She’s fine – just a bit anxious right now. She has autism and this is her way of working things out. It looks like anxiety to you, but she’s actually just fine”] or reassure them [“She’s fine, not in any trouble, just wants to talk about the fact that the movie’s all done”] or berate them [“Seriously? You need to stare at her? You’re okay with demonstrating this kind of behaviour to your own kid standing there?”] or be sarcastic [“Maybe you’ll figure her out if you stare long enough. Keep me posted”].

But I didn’t say any of these things. Instead I just replied to Georgia every single time and put my arm around her.

The stares felt palpably threatening in a way that’s difficult to describe. It’s the taste of something not unlike mob mentality, when you’re not part of the mob. The fact that each of these ten people had the same reaction and were seemingly unaware their behaviour had a negative effect on us was worrying and almost frightening to me.

I imagine this is what it might be like in the future to be the only non-Borg, the only one not in the collective, on the elevator. 

Borg

The eyes on me made me feel hot. I started to sweat. I felt claustrophobic. And I went into full-on protective mom mode: arm around Georgia, I hugged her and I talked to her the way I always try to do: with patience and calm. I wasn’t in the mood to educate but I was not going to miss an opportunity to demonstrate basic human compassion, and try to show people that everyone should have the chance to just be in the world the way they are, without constantly being judged or evaluated by others. Especially those without all the information.

* * *

I went home, poured a glass of Chardonnay and sat down at my computer to do a few Google searches. I got 734,000 hits for the keywords “staring, autism.”

There were a number of hits for T-shirts that read, “Hey, keep staring — you might actually cure my autism!”but mostly they were questions in from parents — and some from people who have autism — who deal with this every day and are baffled and tired of it. There were lots of answers that cited cultural differences in eye contact and social norms. There were some answers suggesting that those who stare may simply be unsure how to ask if you need help.

Uh huh. I’m sure that sometimes it’s an issue of cultural norms, or merely a helpful stranger. But it happens too often to write it off as an altruistic phenomenon.

I don’t know what to do about this. I’ve read about mothers who carry business cards with information about autism on it to give to others. Or mothers who take the time, every single time someone stares at their child, to stop and calmly educate them on the spot about autism spectrum disorder. Good on them.

And I’ve done it occasionally.

But you know what? Some days I’m tired. I work hard, I parent hard and I’m tired. I just want to buy my butter and milk and double-stuff Oreos and cheesies (okay, and my vegetables) like everyone else and go home. I want to go to the movies with my kid and talk and eat popcorn and laugh and get on the elevator to go home, like everyone else does. Believe me, I am used to the fact that my experiences in public will differ from those with neurotypical kids. I’m okay with that.

I don’t worry about it — but the rest of the world seems to worry about it for me.

ranting

I notice those who stare far more than Georgia does — which makes me very happy for her and less happy for me. It bothers me that people can’t come to grips with something one degree off what they consider “normal.”

Normalcy, in a world of wonderful diversity is actually an outdated and unhelpful guiding construct.

Here’s what I want to say to them: At the end of the day, there is no impact upon your life, as an absolute stranger, to ride the same elevator as a kid with autism for 30 seconds. I don’t feel sorry for you if you have to experience this: If that’s your biggest problem, you’re doing pretty well.

Okay, done.

Breathing out.

Old Repetition; A New Lesson

new lesson

Not to repeat myself here, but I’m going to talk some more about repeating.

Late last night I devoured a great little book called The Reason I Jump. I turned out my light at 2:20 am and I lay awake. I was feeling pretty humbled by what this smart and reflective kid wrote at the age of 13. The author is Naoki Higashida, a non-verbal boy with autism who is now 21 years old.

He used an alphabet grid to painstakingly write what it means for him to have autism in a world in which autism makes you an outsider. His reflections are heartbreakingly honest, occasionally discouraging but always enlightening.

The book is written as a series of questions directed at him, which he answers. Some are the exact same questions I would love the answers to – e.g. Why do you repeat certain actions again and again? Why don’t you do what you’re told to do, even after being told a million times? Why do you need cues and prompts? Why do you ask the same questions over and over again? Why do you like being in water so much? 

new lesson

(The answer in a nutshell: It’s the one place a person with autism might feel free and not constantly bothered. Yeah, I can see that.)

It’s important to realize that every person with autism is, of course, different and experiences the world around, differently. But the interesting part of this book is that the questions are so spot-on the questions that have, as a parent.

And the answers actually make sense and fit with some of our own hypotheses about why Georgia does the same kinds of things. In particular, the repetition. Repetition of questions, phrases, expressions and actions. And in turn, the repetition that’s required of us.

Georgia requires verbal prompts and cues for most everything and can be easily put off-task by just about any distraction. She has difficulty with motor planning so helping her through a more complex set of actions for a single outcome, such as making a sandwich or having a bath, requires multiple repetitive verbal prompts. Every single step and each activity is broken down into small parts and steps. Leave a verbal prompt out? The step might well be skipped.

Over time, Georgia has learned some activities without verbal prompting but for the most part, much of our waking time with her is spent reminding her repeatedly, to do teeny-tiny small parts of tasks.

This can be exhausting.

For those of us who can make a sandwich without thinking too much about it, perhaps even while having a conversation and listening to music, or while stirring something on the stove, the complexity of the motor planning involved isn’t a problem.

For Georgia, it’s so tough. Think about opening a package of bread to get two pieces to make a sandwich and closing it up again. No problem, right? For her, this is an actual activity that requires a few minutes and a great deal of concentration. For Georgia to grapple with a bread clip to open a bag of sliced bread, take two pieces out and then re-close the bag requires 5 or 10 verbal prompts. And actual hands-on assistance and reminders of the end goal in order to keep her engaged and moving forward — “on-task.”

So today I sit down and feel a mix of sadness and regret after reading this fabulous little book. I also feel like giving myself a bit of a kick. I’ve been impatient with Georgia all week. There’s this incredible tension that every rational part of my brain tells me shouldn’t exist. She’s in high school now and this is an opportunity that most parents would take to raise expectations and to demand more of a child. I’ve said it to Georgia myself: “You’re in high school now, so you need to remember to do that all by yourself without me helping” or “You need to stop repeating that over and over – you’re more grown-up now.”

I’ve been impatient and demanding about getting dressed, being more independent, more grown-up. I’ve been frustrated and asked her to do more and be more. But I know it’s tough to raise the bar all at once. And according to Naoki, it’s both unfair and unrealistic. And I also realize it comes out of an entirely selfish why-does-brushing-teeth-always-take-twenty-minutes? kind of frustration.

Many parents with kids now in high school are likely thinking, “Where did the years go? She was just in kindergarten yesterday!” They are more likely to wish that their little girls wouldn’t grow up so fast. I get that. I look at Georgia and see the toddler, who disappeared too quickly.

Yet, I want her to grow up. I want her to make her own sandwich and get dressed independently. I would love her to get herself out of bed, to know the steps to take her from bed to breakfast to bus — and do all those steps without innumerable prompts and cues from me. I would love her to have a conversation that isn’t the same question over and over again while we think of different answers and responses as part of moving the question to a dialogue.

While many parents are looking at the changes in their kids with a bittersweet pride and some desire to slow things down, I seek out the change. I celebrate change and growth in Georgia and yes, I want more change.

Maybe though, it’s time for me to change a little too. (A lot.) It’s time for me to be more patient, to slow down. It’s time for me to better balance the tension I have between expecting a lot of a kid who is growing up, and who has fantastic potential in a big picture kind of way while realizing the day-to-day limitations that seem to put up barriers and obscure the big goals.

It’s time for me to change – to remember Naoki’s advice every day and be more thoughtful about repetition — why Georgia needs it. To remember that it’s much more difficult for her. To remember that those around her don’t always understand that need.

To change by stopping feeling sorry for myself during those moments of exhaustion and frustration, and remember the inevitable exhaustion and frustration involved in having autism in our not-so-autistic world. In a world that is easily irritated and impatient with repetition.

To remember that the repetition may underpin and assuage the constant anxiety of autism, of never really knowing what the next moment will hold.

Sad Girl

Everyone should buy and read this little book. Not just parents of children with autism.  Not just grandparents, aunts, uncles and cousins. Everyone and anyone.

Anyone who has seen a kid on a bus with autism, who has watched someone act differently in a public place andwondered, what’s up? Anyone who has a friend or friend-of-a-friend with a kid with autism. Read. This. Book.

David Mitchell, the author of Cloud Atlas who translated Naoki’s book from Japanese into English, is also the parent of a child with autism. His forthright and revealing foreword is incredibly meaningful to me — and familiar. I read it once and then again after I had finished the book.

Mitchell says: it was “the kick I needed to stop feeling sorry for myself, and start thinking how much tougher life was for my son and what I could do to make it less tough. Virtuous spirals are as wonderful in special-needs parenting as anywhere else: your expectations for your child are raised; your stamina to get through the rocky patches is strengthened; and your child senses this and responds.”

He’s absolutely right.

new lesson