the message it sends – the reprise 

Two years ago …

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{image is a screenshot from Facebook reading, I know with every fiber of my maternal being that going to the ends of the earth every single time that Brooke asks for something (or, say, driving 50 minutes each way right now to take her to the store that has the goldfish in the “right” kind of bag that she is in tears begging for) is not really doing her a service in the long run. But damn, it’s hard to find the line. #ThisCloseToDriving50MinutesForGoldfishInTheRightBag}

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?”

Um, no.

“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 a 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.”

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{image is a screenshot from Facebook reading, “Katie: Brooke, are you happy you have your Goldfish now? Brooke, eating said Goldfish: Yeah. Are you happy too that I have my Goldfish, Katie? Katie: I am, Brooke. I mean, to be honest, I’m mostly happy that you’re not screaming anymore, but I’m glad you’re happy. Brooke: Thanks, Katie. #NoBSHere}

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.

Goldfish?

Meh, not so much.

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 {image is a screenshot from Facebook showing a photo of Brooke holding a 36-bag box of Goldfish along with text reading, Because when you finally find the ones in the *right* bags, you take whatever they’ve got.}

***

Last night ..

Katie came out of her doctor’s appointment clutching three bags of Goldfish. Given that she doesn’t even particularly like Goldfish, I was confused. Seeing the look on my face, she explained that the receptionist had had a box of them. “I was pretty sure they were the right ones,” she said, “so I asked if it might be okay for me to take a bag home for my sister. She gave me three!”

When we got home, Katie called Brooke. She showed her the bags and asked if they were the right ones.

“They are!” she exclaimed.

“Well, they’re all yours,” Katie said.

Brooke wrapped her arms around her sister, then ran off with her loot.

“Don’t forget to say, ‘Thank you,'” I said.

“She already did,” Katie said, grinning.

Love.

That’s the message it sends.

20 thoughts on “the message it sends – the reprise 

  1. Magic space. I swear. And not just because it now overfloweth with Goldfish.

    One of my (many) own versions of this has been adding a lot of extra ridiculous to my life of late. Because once upon a time I needed water and so I bought a bottle of water somewhere. Who knows where. And since all they had was Dasani bottled water, that’s what I got. Now, however many months later, not only am I going on excursions in grocery stores looking for those specific-shaped bottles amid entire aisles of bottled water, but I also end up kicking myself mentally each time because I’m buying Coca-Cola Co. brand…water.
    Hence why yesterday I ended up having to mumble-splain to the very sweet pharmacy tech ringing me up that yes, out of all the water in the entire giant grocery store, I really did want to buy one child-sized Dasani bottle that cost like four flippin’ dollars. I couldn’t find the regular size. In the aisle there was only giant and tiny. I did not want a giant water.

    Anyways. This is beautiful and I feeeeeeeeel itttttttt.

  2. I love this. LOVE it. My son has the “right” kind of fruit snacks (Market Pantry mixed fruit flavors). We cannot substitute anything else..and we don’t even try to do that anymore. His teacher (who’s the most amazeballs person) has also taken to stocking her snack troves with the “right” fruit snacks…because he works so dang hard to earn those treats…and he deserves to have the “right” ones.

  3. Jess,

    Been there done that with Jim. Too many times to count. My advise/suggestion for you is if you get the barcode off the bag you should be able to find them on the internet and order them sent directly to the house. I know that you life is frantic, so if you email me the barcode I will find it for you, or try as hard as i can. I have become damn close to an expert doing this with Jim.

    Either way hang in there, you are doing a great job and maintaining what is left of your sanity at the same time. No one can ask for better than that.

  4. Thank you for writing this. I have been told by well meaning people that if I “give in” on everything I will be raising a spoiled child. How hard is life for my son? I will not be able to know that myself. So if I can do what outwardly appears to be a small thing for him, I feel like it’s well worth it. That’s what love looks like to me.

  5. I struggle with that fine line as well. My son has feeding struggles and we go to a feeding clinic. I get why they want me to not be “brand specific”/ certain flavors/ bag type, but I also want him to actually get food into his body since there are not many he even eats. I have been through the goldfish bags situation where I buy the huge box of them because I know he will eat them. About halfway through the box he says they don’t taste right anymore. I know if it is frustrating to me, it is so much more for him.

  6. When my kiddo was small (less than four), she would beg for extra time before bed, i.e. “one more minute.” My worry was that i was being played, with infinite one more minutes, since she never did want to go to sleep (and had used other tricks, hunger, water, etc. to avoid going to sleep). So, I felt like saying yes would be giving in to her machinations (and, yes, spoiling her), and, teaching her the lesson that I wouldn’t have boundaries or rules. I thought I had to say no, to teach her that there were rules. One day, I asked her how she felt when I said yes to the one more minute. I thought she was going to say that she’d “won”.” But, she said “that you love me, mama”. We made a deal. She could ask for one more minute, and I’d always say yes, and she wouldn’t ask again. So glad I learned that lesson.

    I am perseverating on what the right goldfish were :-).

  7. As a kid who was regularly punished for asking for the “right” something and then punished for the ensuing meltdowns (as if I would just happily stop being autistic one day if my parents just said “no” enough times): Thank you for this. Thank you thank you thank you.

    Because, as bj noted above, it wasn’t about winning for me. It was about knowing my parents loved me enough to give me what I needed, even (especially) when I couldn’t explain it in a way they understood.

  8. I saw the orange circle cheese last week. While I wasn’t sure it was the *right* cheese bc there were only 8 different choices, it still made me think of Brooke. And I smiled. And anytime some thing can remind you to smile about someone else, well, yeah.. that’s love.

  9. This post was total therapy for me! Thank you thank you. As a parent to two children on the spectrum, and counsellor to many more, your words are so refreshing and filled with love and wisdom. Can I just say thank you again? 🙂

  10. Lol I remember when I was seventeen, I was obsessed with the breakfast cereal Sugar Puffs (don’t know if they are called that in America), this was way before I found out I was autistic (that was when I was fifty).

    I remember once the factory workers went on strike over pay conditions or something and the shops started to run out of them, it was like a nightmare to me. I can remember going from one shop to another searching for the last boxes on the shelves and then walking down the street just eating them dry out of the box.

    My friends nicknamed me the Sugar Puff Kid, and I really didn’t care so long as I could get my fix, I just had to have my sugar puffs, no matter what! I can look back now and see the overwhelmingly autistic element to that, but at the time it just seemed like a very eccentric thing to do

    Although I don’t think it applies here, there is a flip side to being too accommodating. My social worker has an autistic son, who has just gone to college. Growing up he hated going to the shop, and if there was for example no bread, she would say ‘well pop over to the shop and get some’. He would go hungry rather than expose himself to the shop environment, and his mum would leave it be for the sake of a quiet life rather than force the issue.

    Which meant he went off to college, in a different town, with absolutely no idea how to go shopping for himself, which was very worrying for her. She now regrets not being firmer with him when it came to socialisation issues, but there is nothing she can do about it now as he is fiercely independent and won’t allow her to help him with anything now.

    Apparently he comes home with big bags of coins because he uses automated tills but does not have a clue what to do with the change.

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  12. I love this. I love this because love comes first, and even thought people won’t understand we go extra miles on certain hills because there is SO much that isn’t fair for our kids. That “real world” you talked about. I get it. It’s “real world” all the time, and there are times when you just want your child to be at peace.
    We don’t do ABA therapy, what we do is at home and greatly modified ABA, however as you say an autistic child meets with difficulty every day of their lives – even on an hourly basis. Today my poor son wanted to be outside but today he happened to be bothered by the lawn mower two doors down, and then his sister was bouncing a basketball – so yeah, we do spoil our kids sometimes, or maybe a lot, and it’s okay.
    I also loved that statement about association, that’s so my son, and I feel so many other autistic people. If we do something and he likes it, he wants to do it every time. But then that’s my neurotypical daughter too – so who knows.

  13. Thank you for this – I honestly never thought how wonderful it is to reciprocate something nice for my own daughter, instead of seeing it as a consequence of her pickiness. You are so, so right in that we expect and want our asd kids to push themselves and grow in so many ways, which is exhausting to them. We can give them this little bit back.

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