the message it sends

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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 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.”

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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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32 thoughts on “the message it sends

  1. You had to do this. It was absolutely the right thing to do. It was, in this case, the only thing. Next time, take a picture of the place and the exit and….

    Love you,
    Mom

  2. If it helps we have them at the grocery store here in the same bags. Let me know and I will be happy to send some to you.

    • Thank you, Karen. Now that we know what we’re looking for, I think we should be able to find them. If not, I’ll be back ;).

  3. Yes. Kylie loves her Goldfish crackers too. Another favorite is Tostitos chips – but only the bite size ones in the blue bag. It was a terrible thing when they tried changing the bag design in lieu of “New! Now with whole grain!” Had to check every grocery and convenience store in our area for the “right kind”. Thank goodness they have reverted back to original packaging and texture!! I know what you mean. 🙂

  4. As we cling to a very fine thread here on day 798 of our four week “break”, I sobbed with recognition as I read this. The loss of routone and predicatbility…the struggle to find words and stay connected. So hard for our kids.

    I’ve been contemplating a road trip just to find elevators for my boy to ride (as he carries his oxygen mask, stethoscope and blood pressure cuff along). But I, too, worry about the rigidity which sets in, the associations he forms after a single experience, and the very long and accurate memory he has.

    It’s a hell of a balancing act we do, eh? School starts in two days; I’m not sure which of us is more excited. And relieved.

  5. Wow. I could have written this exact post. All of it. I can relate with this. Heck, I have DONE this…just to find the right juice boxes. Because, like you, I ask my son to do so much all.of.the.time. It was the least I could do to bring him some joy during a time when it all became too much. So glad you found her goldfish. 🙂

  6. As a parent who just packed up 40 – yes 40 – Stoneyfield yogurt smoothies to take with us on a week vacation for fear of not finding a store with the right smoothies…I totally get this. And personally I think it sends a message of love and respect. I know you find comfort in routine and maybe they do taste different to you so I respect that.
    Any parent that tells you that she should have sucked it up or you shouldn’t have indulged her – ask them if they’ve ever driven to more than one store to find the “right” Christmas present. Not all that different in my head.

  7. I stumbled across this post while on facebook. I absolutely loved reading it and it brought tears this morning while I went on your journey of finding the right goldfish. Keep cherishing those moments, even the ones you want to scream about at that moment, but this is a great lesson not only for parents with children with autism, but any parents. Thank you for posting this.

  8. Boy can I relate! We can only have the rainbow goldfish, and they can’t be in the “noisy bag”. I have noticed some stores changing from the original type paper packaging to a plastic type bag. If they change all of them we are in big trouble:/

  9. Yep cried reading this…this is a HUGE issue with Jacob the “right” food..and everything he eats has to be a certain bran..no pulling fast ones on this kid he knows he always knows..my husband always looks at me like I’m nuts when I grocery shop and literally have to go to all 7 of them cause they all can’t carry “Jacobs food” so happy you found the right goldfish!!!!!

  10. I love you! Love your writing talent/gift…..the words you write just get me every time. Can so relate to this post…..
    Thank you!!!!!

  11. Since reading some of the comments on FB throughout “Mission Goldfish,” I developed a suspicion. I suspect that those who chastise are most likely pointing out the speck (that they perceive in YOUR eye), while ignoring the plank in their own eye. I understand EXACTLY why you launched a Mission Impossible-worthy effort to find the darn things. If all behavior is communication, then your girl needed to feel some control. I was feeling the family-wide panic, and the misery inside your vehicle. It was visceral. When things come unhinged inside of me, I want to read a book, or play a computer game and escape and gain some control. And I am a grown-up, and I do what I need to do. Why can’t she? Remove the autism component completely. As human beings, don’t we ALL do the things we need to do when we are stressed? I can think of some far more destructive things that adults do to manage stress (smoking, drinking, eating a dozen Krispy Kreme donuts, etc.). So, she needed the right goldfish…get over it people! Personally, I applaud the success of Mission Goldfish. I think, perhaps, you and Katie and Luau deserve medals of valor!!!

  12. we have our own versions of when to accommodate v. when to push for flexibility, but it looks very different from yours so I had thought I was just listening and learning today. But, I keep finding myself thinking of the image of her holding the “right” bag up to her cheek and that for me just feels so universal. I feel like we can all relate to that feeling of your world spinning out of control in a way you can’t manage and then finding that talisman, maybe it’s a bag of goldfish for her, maybe it’s a hug for me, but whatever it is the thing that for a moment centers you and helps you feel more okay. I don’t know the answers either, just that when I am in that spinning out of control place I would want to be treated with the care that you showed Brooke.

  13. My son is nonverbal, so this a tough post to read. Sometimes, I just can’t figure out why he’s so upset. I have been on similar missions, when I know what it is he needs, but sometimes, I just have no clue.

    • Oh, Becky, I get this. Over time Brooke has become able to tell us more and more. I never would have dreamed we’d be here when we were constantly playing Encyclopedia Brown, trying desperately to connect the dots, just a few years ago. It’s so damned hard when you don’t know. Hugs.

    • Becky, I am totally there with you. After 19 years, I have become very in-tune with my non-verbal son but there are still those things that you can’t figure out and they can’t seem to put into words. You become Sherlock Holmes, reading all the clues, trying to solve the mystery. Sometimes, I just have to offer up to him that I am there, I am calm, and I will do anything/everything to try and make it better. When the world is chaos, we keep to routine, familiar foods, items, to help offset some of the chaos.

      • “Sometimes, I just have to offer up to him that I am there, I am calm, and I will do anything/everything to try and make it better.”

        Love defined.

        Amen.

  14. They have the same bags at Costco! I bought a big box for our week at the beach! And I remember you writing a while back that you now have a membership there, so just pop on by and you’re set for life!

  15. I laughed as I read this (once I saw it resolved satisfactorily) because we have gone to similar lengths for the “perfect pretzel” for Justin. Sometimes I think it’s okay to go that extra mile for them just by virtue of the fact they’re kids, and if there’s any time to accommodate a preference or just an outright need, it’s childhood. So happy you found the place (I wouldn’t have remembered it initially either!).

  16. I can so relate… Davis loves bananas – but, he wants his banana completely peeled, taken out of the skin, with no strings, and the bad, yucky bottom piece off of the banana. I once went through 4 bananas because they were so soft they kept breaking in two – which is completely unacceptable to this 4 year old! He wants it whole, with no bruises! On the plus side, my potassium went way up that day! (I don’t think we are giving in any more than most mom’s out there… we just have a little bit of a different battle.) You did good Mom – and just for the record, I’m sure you have your eyes peeled at every grocery, convenience and gas station for more goldfish to replenish the “right bag”. Because I would too!

  17. Totally understand this. You’re such a good Mom! And yes it’s hard to find that line between always giving in and helping them learn to self regulate. It’s a daily battle for me. HUGS.

  18. So beautifully written. So much I can relate to. You are a fantastic mama for your girl and she is precious; both of them are – I love Katie’s honesty and her commitment to her sister. It is a roller coaster of an incredible journey and we do what we have to do. 🙂

  19. Reblogged this on Roy F. McCampbell's Blog and commented:
    This is a story that has a moral, a moral that most school districts do not understand. It is best explained in the words of this writer in this reblog post : ” 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.)”

  20. Out of curiosity, what IS different about these bags? Is it the size, texture, sound?

    I wouldn’t be able to bear having my little one in such obvious pain, you did the right thing Jess. Katie deserves something amazing because she truly is the BEST big sister on this entire planet, what a patient, selfless, understanding, all around incredible kid. You and Luau are a great team, who have brought great kids into this world. Congratulations, Jess and Luau, you’re two of the few who really are doing it right.

    • we can’t figure out anything about them that’s different, but she won’t eat the dang things any other way. and i *may* have even tried to trick her to see. and um nope. and thank you 🙂

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