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?
(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 I 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.
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.