I am so grateful for your love and support for my girl yesterday. I tried to read all of your comments – all 741 of them as of this morning – but eventually it was just more than I could manage, both logistically and emotionally.
I agree whole-heartedly with so much of what you said, first and foremost that as parents we need to not just talk to our kids about acceptance but model it. I was particularly touched by the Muslim mom who pointed out the hypocrisy of so many non-Muslim parents who kick and scream for acceptance for their autistic or otherwise disabled or different kids and then ostracize her son because of his religion. If we are outraged by what we are perpetrating only when it lands on our own laps, we are desperately missing the mark.
But there was something else in the comments. Something that I saw time and time again. I had begun to respond to it, to try to explain, but I eventually ran out of gas and had to simply scroll by with a mental note to address it later. It was this: many of you, undoubtedly trying to protect me from hurt, which I appreciate, assured me that the ‘good’ part of this was that Brooke didn’t know what was happening. That she was, as some said, “blissfully unaware of the cruelty of those girls.”
I love you for what I know are the good intentions behind that sentiment, but respectfully, I’m calling complete and utter bullsh-t.
I talk ad nauseam about how important it is to presume competence. This, my friends, is where the rubber meets the road. To suddenly assume that she doesn’t get it, doesn’t see what’s happening, isn’t taking in the cruelty, the mockery, the exclusion, the hurt just because it’s painful to contemplate the alternative is doing her a grave disservice.
Years ago, I wrote about an incident in which a little boy was teasing her at a birthday party.
The kids were happily crammed into a crowded table at their classmate’s birthday party. They were carefully painting their plaster sculptures, chattering and bustling, sharing paints and cups of water for cleaning brushes.
Brooke was hard at work painting her plaster clown. From the looks of it, not a single color on the palate had escaped her brush.
From a couple of seats away, Katie glanced down at her sister and called out encouragement. “Brooke, you’re doing a great job!”
A little boy across the table from Brooke chimed in.
“Yeah, you’re doing a great job making a mess, Brooke. Nice mess. What a great job. You’re just dumb.”
He barely finished the last sentence before Katie angrily shot back.
“Stop making fun of my sister.”
“But she doesn’t even pay attention,” he said. “Watch this.”
He looked right at my baby girl, diligently painting her project and he shouted, “Hey Brooke, DOYNG!”
She didn’t flinch. She kept painting.
“See?” he said, looking around the table at his captive audience. He looked smug, having proven his point. “She doesn’t even pay attention.”
I took a step closer, but a clear, determined voice from across the table stopped me in my tracks. I know that voice better than I know my own, but there was an anger in it that I didn’t recognize.
“STOP IT!” said the voice. “STOP MAKING FUN OF MY SISTER.”
“She doesn’t even know,” the little boy said flippantly.
She was six when that happened, SIX when I said:
He may be right; she may not know. She may not understand. I’m not convinced. She sees so much more than we think she does. But even if she doesn’t know now, she will. Then what?
Can I protect her from the sting of ignorance?
She’s thirteen now, and I can say, unequivocally, that she sees EVERYTHING. That she takes in everything around her like a non-stop camera, recording it and stowing it away for processing, if not in the moment, then when she’s ready – in her time, in her way. There is nothing – NOTHING – that she does not see, hear, and file away.
In the moment, it’s easy to argue that she’s “blissfully unaware.” It’s easy to convince ourselves that because she’s not reacting in the way that we might expect a neurotypical person to react to the situation, that she’s not watching it unfold. It’s easy to build a tower of evidence that she’s “in her own world” – scripting, laughing, behaving exactly as she was before it happened.
But she’s not neurotypical. Her brain doesn’t work the same way that mine does or yours might. It works the way HERS does. She reacts the way SHE does. And when we start to apply all of our knowledge of HER brain and HER reactions, that tower of evidence comes crumbling down.
My daughter has come to me YEARS after things have happened, things she never mentioned before, things I’d been convinced had simply rolled over her head, to talk about them, to dissect them, to get help in understanding them, or, even more often, to offer insight into them.
In 2014, I wrote:
[I]t doesn’t mean assuming that she understands all of this right now. What I am assuming is that she’s taking it all in, absorbing it, holding onto it in her steel trap of a brain until the time comes when she’s amassed all the tools that she needs to peel back the stored layers and extract her truth.
I’m presuming that even if she’s not yet ready to connect all the dots now, she is capable of learning, growing, evolving, tool-collecting and ultimately layer-peeling – in her time and in her way. That, to me, is what presuming competence is about.
About ten minutes after the incident yesterday, once we knew that Becky would be along later, Brooke all but demanded that we leave the pool immediately. It was only 11:30, far earlier than she would normally eat, but she began pleading for lunch. She might not have known exactly what was wrong, but she sure as heck knew that something wasn’t right.
As we made our way back up to the apartment, I said, “Brooke, honey, those girls in the pool weren’t being very nice to you.”
I explained that they had been teasing her. That it wasn’t about her, really, but about their need to feel better about themselves by being mean to someone else. That I’d rather have a friend like her than a pretend friend like them any day of the week.
Throughout the conversation, she continued to repeat scripted lines that at least appeared to be wholly unrelated to what I was saying. I indulged them, responding in kind before returning to what I was saying. Again, to the uninformed observer, it might have looked as though she wasn’t listening.
When we got to our door she asked, “Why were they mean?”
I circled back and repeated my earlier explanation. Her response was, “Want some SARDINES?” It’s a line from Oswald and the way she says it is purposefully hilarious. She waited for me so that we could answer, “Nnnnnnnnnno, thank you!” in unison. She had no further questions about the girls, so I dropped it.
Back in April, we talked to Brooke’s neurologist about a particular seizure detecting technology for her bed. “It’s not reliable,” he had said, ” so it might help you sleep through the night, but it won’t actually make her any safer.” Those were the words echoing in my head yesterday as I made the decision to talk to Brooke about what had happened at the pool.
It might make me feel better to pretend that she doesn’t get it, but doing so doesn’t help her. It doesn’t arm her with the tools she will need when she encounters people like those girls or the boy at the party or far worse: those who want to manipulate her, coerce her, or do her harm. It doesn’t equip her to deal with the real-life situations that she will need to navigate as she gets older. It doesn’t teach her to listen to her gut when something feels off – or to recognize that it should.
It might help me sleep through the night, but it doesn’t make her any safer.
Yes, my friends, I talk ad nauseam about how important it is to presume competence and this, right here, is where the rubber meets the road.