Yesterday morning we had Katie’s parent teacher conference. It went amazingly well. My heart swelled with pride upon hearing, “She can strike up a conversation with anyone in the school! She is helpful and supportive with the other students without ever seeming condescending! She is a delight to have in class!”
As if to prove that she is indeed the angel in the picture we were all painting, she spent most of the 20 minute conference pushing her sister around the room on a little cart to help keep her entertained (and out of trouble). Brooke was having a ball.
At one point, they got a little overzealous and Brooke fell off the back of the cart. She was startled, but no worse for the wear. Katie helped her up and, once on her feet, she looked (almost) at Katie and said, each word painstakingly and individually articulated, ‘Thanks, Katie. You’re so sweet.” and then awkwardly ‘hugged’ her, meaning that she moved into her space with the side of her body and Katie responded by gently patting her arms in a tentative version of a hug.
It was warm and sweet and touching and each of us responded to it enthusiastically. So, of course, she did it again. In EXACTLY the same way. With EXACTLY the same intonation. Punctuated again with the same awkward hug. And then again. And then the hug. And then again. And then the hug. And then again. And then the hug. We watched it unfold, smiling the whole time, simply thinking what a sweet and wonderful moment this was.
Later that night, I was struck out of nowhere by the following thought: “What did that scene look like from the outside?” And I started to recreate it in my head. I replayed it on my mental DVR (preceded by a warning, “running out of space! please delete any previous recordings you may not need”) and some other details came into focus. The first graders streaming into the room, the teacher watching the scene (I had assumed that she was nodding and smiling along with us, and then I realized that she wasn’t in the shot from this camera angle).
What must they all have thought about this odd interaction between two sisters? Why did they look almost like strangers unsure of how to approach each other (while I saw so much intimacy in the embrace that it almost hurt)? Why did Brooke keep repeating the same sentence over and over (and over) again? And when she did, why did it sound like a tape recording? Why did the words sound so precisely scripted, so unnatural? Why did the scene look so odd?
This is the school that Brooke will be entering in the fall. These are the kids that will be the second graders down the hall. This will be one of the teachers she will pass every day in the halls. What must they be thinking about her?
So many people that we know and respect put a lot of effort into ensuring that no one learns of their child’s diagnosis. They are smart, thoughtful people who adore their children and who desperately want to protect them from discrimination. And I get that. I totally get it.
Even after Luau and I had told our story publicly, I still had my reservations about ‘outing’ Brooke to those in her immediate world. I didn’t want her labeled. I never wanted her to be limited by others’ ideas and misconceptions about autism. More importantly, I never wanted her to limit her own expectations of herself.
And then we took a vacation last spring when Brooke was 4. We were down in Florida and I was watching her drift around the pool in a floaty, aimlessly wandering around the shallow end, like her own little island among various groups of kids playing with each other. She came upon three 5-6 year old girls who were enthusiastically pretending to be swimming princesses.
Brooke is a child who is incredibly (and, relative to her diagnosis, somewhat a-typically) socially motivated. It is heartbreaking for a parent to watch her attempt to approach other kids, particularly those who don’t know her. She obviously wants to engage other children, but she has no idea how to do it effectively. A year ago, she had even less of an idea than she does now. And so, what she did in order to try to join in the reindeer games was to tell the girls their names.
I’d imagine that it goes without saying that she didn’t actually know their names, but that didn’t deter her. She floated on over to them, insinuated herself right into the middle of their circle, and, with an outstretched little arm, she pointed at each of them in turn. “You’re Maya. You say, Hi, I’m Maya.” “You’re Fooey. You say, Hi, I’m Fooey.” And so on.
I sat paralyzed at the edge of the pool. I had no idea what I was supposed to do. Do I smile and pull her away from them without explanation? Do I try to explain? What exactly would I be explaining to a group of 5 and 6 year olds? Do I jump in and somehow try to reshape this misguided attempt at conversation (which is what I would now do, but I wasn’t then prepared to do)? How do I save my child from the hurt that I see coming at her like an oncoming train? What the hell do I do?
As I sat there trying to figure it out, the little leader of the pack piped up and said, “My name’s NOT Maya, you weirdo! Come on you guys.” And with that, she and her little swimming princess posse turned their backs on my baby. I consider myself a good person. I love children. I’m an organ donor. I like rainbows and musicals and cuddly little bunnies. Yet it was all I could do not to drown that little %$@&*. I am not exaggerating when I say I actually felt my foot twitch (Step on her head! Do it!).
Do I think that girl was raised badly? Not necessarily. Do I wish her parents had helped make her aware that some children may have some behaviors that look a little odd to her? That she should respect other people’s feelings even when they seem ‘weird’? Yes and yes. But let’s be honest. We can’t expect the rest of the world to accommodate our children without understanding them.
My daughter does not always act the way the world expects her to. Her attempts at conversation can sometimes put other children off. But if they get past that, they’ll discover the most wonderful little human being that they will ever have the privilege of knowing. I believe that it’s part of my job to make sure that they know that.
In order to better understand Brooke’s experience, I search to find parallels in my own life to what she goes through. I think of how I feel when I travel to a Spanish speaking country. I have a decent Spanish accent, and I remember just enough from high school Spanish to be able to start a conversation sounding fairly competent. The problem is that’s all I’ve got. I know just enough to make people assume that I am a fluent speaker.
So they speak the way they normally would, which is extremely fast, words melding together and peppered with idiom. I am almost immediately lost and I start to get panicky because I can’t possibly keep up. My lack of vocabulary will always betray me in the end. My decent accent has done me a disservice.
One day after kindergarten parent orientation, I worried aloud to Luau about how the alpha moms at the elementary school might react to Brooke if they were aware that she has autism. “What if we tell them?” I asked. “What if we don’t?” he answered.
And it all came together for me. If your child were wheelchair bound, would you say, “I don’t want people to treat her differently, so I’m going to carry her to the playground and sit her on the swing so that she’ll look ‘normal”? By doing so, have you helped her? What happens when recess ends and it’s time to go inside? She’s stuck on the swing because she can’t walk. The gig will be up pretty quickly. That child needs a wheelchair to function. Brooke needs understanding, patience, and tolerance. She needs awareness.
A couple of years ago, I was with the mother of one of Brooke’s first friends from school. He is this wonderful little boy who has Down Syndrome. As we sat watching the kids play, I was amazed to find myself envying her the visibility of his disability. I was thinking that they had the luxury of people managing their expectations upon meeting him. People give themselves the gift of getting to know the truly delightful child behind the physical manifestation of his challenges.
Unlike her friend, Brooke does not wear her challenges physically. She looks like a beautiful, typical little girl. For her, autism is not a physical thing (coordination disorder notwithstanding). She doesn’t flap her hands or spin in circles, and although she loves being rocked, she doesn’t rock herself. Her lack of eye contact might send up a flag, but you’d have to be looking for it. She no longer sits in the corner playing with cobwebs (like she did for nearly 2 years, seeking them out in almost every environment and becoming consumed with them). She just looks like Brooke. But, like my Spanish accent, her appearance can do her a disservice. Her autism ultimately betrays her.
Awareness will always be a double edge sword. It is imperative to us to avoid saddling Brooke with a label. We don’t ever want her to feel that we think her autism is what defines her. But it would be far worse than naïve to think that it isn’t a part (a big part) of who she is. Autism colors everything for her (for us). We all look at the world through the lens of our own experiences, challenges and abilities. Like it or not, Brooke interacts with the world through the filter of her autism.
Do I think this will always be the case? No, I don’t. Adamantly, passionately, viscerally I don’t. All of our efforts are designed to give her the tools that she needs to thrive in the world (world(s)? hers? ours?). As she gains proficiency with those tools, she should (and will) be increasingly challenged to function with decreasing accommodation.
But where we are now, I want her to be as comfortable and secure in her world as she possibly can be. And that’s going to take some work. It’s going to take tolerance, understanding, patience, and love - all of which are the fruit of awareness.