Last Sunday, Brooke and I went to the beach. It was just the two of us, and it was awesome. I wrote about it HERE.
On the way home from the beach, Mama was tired. Tired enough that I began to worry about myself on the highway. So I told Brooke we were making a pit stop. I veered off at the nearest exit and we pulled into the closest gas station. We went into the minimart and searched for a snack for each of us and, most importantly, a soda for Mama. I don’t know what it is about soda, but I just can’t get sleepy while ingesting bubbles.
We grabbed our stash – a Sprite Zero and a hundred calorie bag of veggie sticks for me (oh yes I did) and a bag of Pepperidge Farm Goldfish and a water for the little one. And we were off.
The stop was inconsequential. There was nothing about it that made it particularly memorable. If you’d asked me later, as would become EXTREMELY relevant, I’d have (and did) say, “I have no idea what exit it was nor even which highway it was off of,” as there are two major thruways between the beach and home. But so what, right? Um, no.
The next night, Brooke wanted more Goldfish. So I handed her some from the pantry. No. No, no and no. They were no longer the “right” kind of Goldfish. Despite the fact that I could discern no apparent difference between the ones I was handing her and the ones she’d eaten the night before, she was adamant. The bag was “wrong.” Wrong, wrong and wrong. Offensively wrong. Unthinkably wrong. Just wrong.
I tried to cheat. I snuck the Goldfish out of the offending bag and poured them into a baggy. I pretended I’d just found it. “Look, honey,” I said, “I found these in the drawer. Are these the right kind?”
She wasn’t sure. She was willing to give them a shot, which was big. I held my breath as she ate one. And then another. And then she declared them … wrong.
I asked what it was that made them wrong. Her answer? They’re not right. Duh.
She burst into tears. “We will go back to the store from the beach,” she said. “We will get the right ones in the right bag there.”
I was exhausted. It was rush hour. An hour drive each way (minimum) to a gas station that I may or may not be able to find that may or may not be open to find Goldfish that they may or may not still have just seemed like an exercise in stupidity, even for me, who specializes in wild goose chases. I took a deep breath and calmly told her that we would work on finding the “right” Goldfish later in the week.
I felt like it was the right thing to do. To tell her that we would accommodate her but that it wouldn’t happen rightthatverysecond just because she wanted it rightthatverysecond. Somewhere there’s got to be a balance between supportive parenting of an autistic child and ordering a factory full of workers to search a crapton of Wonka bars to find a golden ticket lest precious Veruca stomp her feet. I was fairly sure that I was successfully treading the middle ground. This time.
She eventually bounced back that night, but it wasn’t easy. It took time. I assured her again and again that I wasn’t saying, “No,” I was simply saying, “Not rightthisverysecond.” I promised her that we would look later in the week for the “right” Goldfish in the “right” bags.
And we did. I snapped photos from the grocery store and sent them home to Luau. “Are these the right ones?” I asked via text. “Or these?” The answers came back – a resounding No. And a resounding No.
On Sunday, we went back to the beach – this time as a family. As soon as we piled into the car to head home, Brooke began to cry. “Can we stop and get the right Goldfish?” she asked. My sweet girl is a creature of associations. The beach now means a stop for Goldfish on the way home. Period.
The week had been hard on my girl. ESY ended last Friday. There’s been no structure. No stability. No predictability. She’s been clingy and fragile. She loses words. She scripts for survival. The damned Goldfish were the last straw on the camel’s nearly broken back.
I promised her that we would try to find the store, but I was worried. I told her that I wasn’t sure where it was. She cried harder. And then she screamed.
Luau asked the obvious questions.
“Do you know which highway it was off of, babe?”
Um, not really.
“Will you recognize the exit when you see it?”
Um, probably not.
“Do you know what town it was in?”
“Is there anything that you can give me here that might possibly in any way shape or form be helpful, oh dearest wife?”
Um, apparently not.
And so it was that we got off of EVERY exit between Ipswich and wherever the hell this place actually was. EVERY one. And so it was too that I said, “I don’t think so,” and “No, definitely not,” and “Oooh, maybe. Wait, no” at least seven hundred and forty-two times.
And so it was too that Brooke lost her words entirely and began to moan and hoot and gesture wildly because it was all she had left. And then she pointed at her mouth like a bird, starving for a worm from Mama bird. I ached to be able to give her the damned worm.
At one wrong exit, we saw a Shell Mart. Katie and I jumped out like advance members of a Swat team, checking the premises for any sign of the “right” Goldfish. it seemed worth a shot. Wouldn’t all the gas stations have the same ones? It turned out that we’d found the only convenience store in Greater New England that didn’t carry Goldfish at all. Go us. I refrained from making a crass gesture at the sky and got back into the car, where things were only getting worse.
Brooke looked like she wanted to crawl out of her skin. She crashed into me, then pulled desperately on her seatbelt. She pinched my arm, then her own. Finally, she thrashed against the back of the seat. She had nothing left.
Katie tried to distract her. “Hey, Brooke,” she asked, “wanna play the repeating game?” Brooke loves the repeating game. Katie hates it. Brooke screamed as if she’d been seared with a branding iron in response. We were long past games. Or words.
I mouthed, “Thank you,” to Katie.
She mouthed back, “Sorry; I tried.”
Six hundred and eighty-one more exits and lo and behold, there it was – the holy grail. It looked different than I remembered it. I’d be an awful witness to a crime. “It was huge and white. Or maybe small and pink. Hmm, then again, it could have been polka-dotted or striped. Or um, argyle?”
But it no longer mattered how we’d gotten there. We were there. Katie and I ran in and circled the tiny store. “I know this was it,” I yelled to her, leaving her where she was and running to the other side of the display to cover the most ground in the least amount of time. Navy seals have nothing on an autism mom on a mission for the right Goldfish.
“They have to be here,” I yelled.
“Mama!” Katie shrieked, “I found them! I have them! They’re right here!” She couldn’t have been more excited if she’d found Katy Perry tickets on the street.
I can only imagine what the clerk thought of all this, but his face betrayed no reaction. Breathless, I brought a bag to the desk and asked how much it was. “69 cents,” he said. I threw a dollar and the counter and said, “I’ll be right back, I just have to .. well, I’ll be right back.”
I ran out to the car and held them up to the window. “Brooke, honey,” I asked, “are these the right ones?”
“Yes,” she said, taking them from me. Within seconds, her breathing slowed. She put the bag up to her face, touched it to her cheek, then looked right at me and said, “I feel happy.” I left her still nuzzling the bag as I walked back into the store.
I went in and bought the remainder of the display box, along with some crap for Katie that she really shouldn’t have been eating along with the disclaimer that I was only buying it out of overwhelming guilt that she’d just been on this wild goose chase and had somehow managed to remain so caring and generous about the whole thing even when her sister was screaming at her.
She laughed at me, as she is wont to do. “Perfect,” she said smugly. “I’ll take it.”
It’s a tough call sometimes, knowing when to accommodate versus when to stretch. Knowing when it’s worth the risk of institutionalizing rigidity versus insisting on encouraging flexibility. Okay, it’s a tough call
a lot most of the time.
But for me, this is what it comes down to …
We push Brooke, and more importantly, ask her to push herself, well past her comfort zone ALL. THE. TIME. Every time she leaves the house on a weekend, she’s out of her comfort zone. Every time we bring her to a new place, encourage her to try a new thing, introduce her to new people, ask that she interact with the world on its terms, we take her out of her comfort zone. Three weeks with no camp or school leaves her way, way, WAY out of her comfort zone.
So if finding the “right” bag of Goldfish helps to make her feel safe in a world that largely does the opposite, well, damn it, this family is headed to the ends of the earth (or every exit in between Ipswich and Boston) to find it.
There’s always going to be the concern about the message that all of these machinations send to my kid. Questions about the long-term lessons that she’ll take from our efforts. A debate about whether or not we’re coddling her, or not preparing her for the “real world,” whatever that might be.
But at the end of the day, here’s the message that I see in this story … that she’s so desperately loved that the people around her will go to ridiculous lengths to make her happy (just as we do for each other, because, ya know … family.)
And the lesson? That it’s okay for her to do the same for herself as an adult. That we can’t always get what we want exactly when we want it, but that we can, with enough patience and determination (and perhaps a little help from those who care about us), find what we need in order to feel comfortable in a world that doesn’t offer a whole lot of that for free.
Those, to me, are messages and lessons that far eclipse any of the others.
My daughter is autistic. There are certainly places where rigidity will be disabling for her.
Meh, not so much.