Things had gone downhill quickly. We’d made a gross tactical error, deviating from the plan. Sometimes Brooke can handle it. She can evoke the F word – Flexible! – but this wasn’t one of those times.
We were on our way to Toys R Us in search of a video. Katie suggested we stop into Five Below first. “They’ve got videos too, Brooke, but they’re cheaper than at Toys R Us. That means that we’d be spending less money if we found one there, and spending less money would be better.”
Brooke protested, but we pushed through, promising it would be just a quick peek and then onto Toys R Us.
The store was a nightmare. The music was loud and the shoppers were louder. It was crowded and chaotic. Anxiety bubbled up and boiled over within seconds. We couldn’t stay.
Brooke was still crying as we got into the car. Not good.
As I drove, I reached a hand back to try to soothe her. I knew that words would add fuel to the fire, but perhaps my physical presence might help. She looked at my hand, unsure of what it was doing in her space. She touched my palm with two fingers.
The parking lot traffic began to move again as cars made their way through the stop sign up ahead. I had to take my hand back to drive. I felt helpless. And miles away from my girl.
I heard a sudden movement, and the pull of a seat belt stretched to capacity. I looked in the rear view mirror, ready to hit the brakes and jump if that’s what I had to do.
What I had to do was watch.
Brooke had pulled herself as far across the back seat as the seat belt would let her go. She had looped her arm through her sister’s and had laid her head on her forearm, which was all that she could reach.
“Brooke, what are you doing?” Katie asked.
“I’m giving you a hug,” Brooke said.
“Are you okay?” Katie asked.
“Not really,” Brooke said through tears.
Katie slid over to meet her sister. She put her arm around Brooke.
“It’s okay, Brooke, we’re on our way to Toys R Us, okay?”
“It’s so very far away!”
I assured her that it was right around the corner.
“Katie, we would do the rarararararavs.”
Katie balked. The rarararararavs are a script – Magenta and Blue talking to each other in doggy voices. She hates it. She said, “I’d rather not do that, okay, Brooke?”
I cringed. Katie has every right to say that she’d rather not do something, and she said it nicely. But damn, right now? The kid is on the edge of Chernobyl. A little help? I kept quiet. It’s not her job. She can’t carry the weight of being the one who bends every single time.
“Please will you do the rarararararavs, Katie? It will make me cheered up.”
And there it was.
We tend to think of self-advocacy as group advocacy. We think of political agitation and legislative action. Of writing blogs and books and changing thought processes about disability. But you know where self-advocacy starts? In a car. With a kid who, for the very first time, has turned to her sister to say, in her own way, “I’m losing it, Sis. But I know what I need. A hug and a script will offer comfort. Can you help me please?”
And a sister who advocates for herself too and says, “One time, okay?”
And who does the script. And who doesn’t let go of her sister afterward, but instead tells her, “I love you, Brooke. Remember that, okay?”
Politics matter. Changing perceptions and laws and hearts matter.
But they all start with the not at all small step of recognizing and asking for what we need from those closest to us.
My kid did that yesterday.
And I couldn’t be prouder if she’d testified on Capitol Hill.
(And just to be clear, I’m pretty damned proud of her sister too.)