Will there ever come a time when I do not find each and every decision that we make on Brooke’s behalf agonizingly difficult? Will there ever come a time that I can simply choose an option, walk away and lay my head down to sleep? As a parent, will I ever stop second guessing myself?
In most of the other aspects of my life, I have found that although self doubt can be very difficult to live with, it serves a productive purpose. It has propelled me to be better at a lot of things than I might have been had I been more sure of my decisions.
That is not to say that I am particularly insecure, or at least no more so than the next guy (or gal). I never questioned my ability to make the right choices, but I haven’t always trusted my first instinct when making them. Because of that, I tend to do a lot of research before choosing a path. Like .. a LOT. As my dad likes to say, I do my ‘due diligence’.
I insist on making informed choices. When I buy a car, I consult Consumer Reports and then call friends who drive the models I may be looking at (and their comps). When we moved, I hired a school consultant to help us research the school systems in the area in order to decide where we would live. When we got Brooke’s’s diagnosis, I dove head first into comparing and contrasting methods of teaching and various treatments. There’s nothing I can’t overanalyze.
I’ve been reading a wonderful book called , The Curious Incident of the Dog in the Night-Time, by Mark Haddon. Like so many other things these days, it’s at once a torment and a delight to read. The story’s hero is an autistic young man named Christopher who speaks with an incredibly convincing voice about how he experiences the world. By way of explaining why he doesn’t lie, he says the following:
“A lie is when you say something happened which didn’t happen. But there is only ever one thing which happened at a particular time and a particular place. And if I think about something which didn’t happen I start thinking about all the other things that didn’t happen.
For example, this morning for breakfast I had Ready Brek and some hot raspberry milk shake. But if I say that I actually had Shreddies and a mug of tea I start thinking about Coco Pops and lemonade and porridge and Dr Pepper and how I wasn’t eating my breakfast in Egypt and there wasn’t a rhinoceros in the room and Father wasn’t wearing a diving suit and so on .. “
Reading that passage made me think immediately of how I feel when we’re trying to make every day decisions about what will be best for Brooke. For every path we choose, I think of the scores of others that we are necessarily dismissing. For every single situation, there are infinite scenarios left behind.
We go back to soccer every Saturday morning and we walk through what has come to feel like an elaborate farce. Last week, we got as far as getting Brooke onto the field on Luau’s shoulders. They waited on line together so that she could take her turn at kicking the ball into the unattended goal. Together they towered comically over the little preschoolers on the field. When it was Brooke’s turn, she protested, but she climbed off of Luau for just a moment, kicked the ball, and then ran away. She left the field long before the game actually began.
That’s the closest we’ve gotten so far to getting her to join in. Forty-five seconds on the field and fifty-nine minutes, fifteen seconds wandering around avoiding the field, waiting for the game to end so that we could join the team for snacks.
The nagging question is, are we doing her any favors with our persistence or are we engaging in a pointless (at best), anxiety producing charade that will ultimately teach her little to nothing (other than, perhaps, that she hates soccer)?
Brooke has been attending a ballet class at a local dance studio. Although she doesn’t always follow along, she really enjoys the class and looks forward to it each week. She likes the predictability of the routine, and when she gets overwhelmed, they are happy to let her wander off and do what she needs to do. There is a box of tutus in the room that she climbs into. She finds comfort hiding her whole body in the sea of colorful tulle.
But now it’s time for the recital, and once again, we have to make a decision. Unfortunately, the recital is not a casual affair. It takes place in the auditorium of a local college and the studio’s entire dance troupe is involved in the show. It is a ticketed performance, on a full size stage with a huge audience. Quite frankly I think it’s absurd in its scale, but it’s somewhat characteristic of the town in which we live. I’ll leave that editorial for another day.
So the little ones are expected to gather together, in all their costumed regalia, about thirty minutes before the show. They wait in a room where they are expected to color quietly while the last minute preparations are completed. When it’s time, they are marched in a line out into the hallway to await their cue. Eventually, they hit the stage for their dance – the twinkle twinkle, Brooke’s favorite song, of course (it’s about a star!)). Then they march back to the room where they stay for over an hour while the rest of the show goes on and then they come back onstage for a final bow with the entire (meaning upwards of a hundred kids) ensemble.
For a five year old little girl with serious anxiety and sensory issues, I don’t even know where to begin to explain how close to impossible this would be to navigate. There aren’t enough visual prompts, social stories or token boards in the world to get her through that mess right now. The waiting time, the tight spaces, the noise, the lights, the inevitable confusion that accompanies a group of four and five year olds, the audience, the clapping, the music, the hustle and bustle and then the crowd on the stage would be harrowing at best and catastrophic at worst.
And so, along with her ballet teacher, we have decided that she will not participate in the show. Which leads to the questions, How much of this does she understand? Does she know that her class has been working toward this big event? Does she have any idea that it’s happening? How do we effectively explain our decision, or do we?
Luau took her to a dress rehearsal yesterday with just the little kids. She put on her costume and was generally happy, though she wandered on stage quite a bit and had some moments of pretty serious frustration and anxiety (read melt-downs), even in the small group with no audience and none of the waiting time, essentially convincing Luau that the bigger situation just wasn’t going to be doable. He explained to her that this was to be her show and that ballet would be all done after the dress rehearsal.
After it was over, Brooke looked at Luau and said, “I did a good job at my show.” And then she said, “I want to do ballet again sometime.” Success? Well yes, contextually, I suppose, but I’m having a lot of trouble accepting that from the place I’m in this week.
Luau was torn apart by the whole thing. I felt terrible for him, because most of this was on his shoulders. As the stay-at-home parent, he’s the one that was there, in the trenches, and could see what was going on and how she was handling (or not handling) it all. I had no choice but to say that as much as I could offer my guidance, I just wasn’t there, which is one of the hardest things for me to have to say.
I hate that I’m not there. I hate it. I hate that I never got to see my baby on stage, I hate that I can’t BE THERE, I hate that I can’t make it all right. All right for Luau, all right for Brooke, all right for all the kids for whom these things are so damned hard.
The truth is that I’m angry and I’m sad this week and I hate that I’m angry and sad, and so, of course, that makes me more angry and more sad (because that’s just so productive). I’m angry at heredity, I’m angry at the anxiety that is the coughing, crowded, noisy, unpredictable elephant in every room in my house.
I came home from a business dinner last night (sorry, Rob, that’ll be its only mention) and I went into the girls’ rooms and watched them each sleep for a while. When I went into Brooke’s room, I reached out to touch her face and she rolled in such a way that she landed right on top of my arm, essentially trapping me under her. I couldn’t have been happier to not be able to move.
I cradled her sleeping head and watched her breathe and I thought about how peaceful she looked as she slept. Sleep had taken the anxiety that wracks my beautiful girl day in and day out and left peace in its place. And I sobbed as I held her because I realized just how much of a difference that made.
I thought back to an essay I read some time ago by a man named Roy Richard Grinker, the author of Unstrange Minds: Remapping the World of Autism about his teenage daughter with autism. He wrote:
“Sometimes, at night, Isabel has a hard time falling asleep. It helps her if I sit in a chair in her bedroom. Looking at her then, from across the room, I see two different Isabels. There is Isabel awake—often hyperactive and isolated—and Isabel asleep, a beautiful child drifting into a calm night.”
I wish I could find a way to bring the two Brooke’s that I see together – to bring that peaceful, relaxed, sleeping child into the world of the daytime. To meld the laughing, loving, vibrant child with the one that I see at ease in her sleep. More than anything, I want to find out how the sleep thief does it. How does he steal the anxiety that the daylight so jealously guards?
I have no neat wrap up this week and I haven’t yet figured out where the lesson lies in all this. The anger and the sadness are moments in time. They will likely be gone (or at least largely replaced) by next week. They will serve their purpose of driving me forward, as they usually do, to find ways to make things better.
In the meantime, I’ll be here questioning every choice I make and smacking myself over the head for losing sight of the little victories. But mostly I’ll be trying to figure out how to get past those damn guards.