a common goal

When Katie coughs, Brooke shrieks. It’s a visceral, reflexive, heartbreaking response. It looks, for all intents and purposes, like a reaction to a physical attack.

It’s been a challenge for years. So long now, in fact, that I don’t remember a time when it wasn’t a part of our lives – the elephant in the room around which we often contort ourselves in order to get through the day as a family.

Five years ago, I wrote the following:

The night before last, I took Katie out for ice cream. It was a school night. It was cold. I was toast after a long day of work, fighting off the beginnings of the same cold whose tail end continues to dog her. We had no right, nor any real desire, to be going anywhere. But we had no choice.

She had been coughing through dinner. She couldn’t control it. And her sister, no matter how hard she tried, could not control her reaction to the cough. She finally melted down completely – crying, screaming, and shaking.

I did everything in my power to make it better. But it wasn’t in my power to make it better. Katie had to cough and Brooke’s wiring simply couldn’t process it.

With all of my energy focused on trying to calm the little one, I missed it at first. I might have missed it completely had I not heard the sniffle. Katie was crying too. “What, baby?” I asked.

She shook her head.

“You know it’s not you, sweet girl,” I said. Please remember that it’s not you.”

She shook her head again. “It IS me, Mama,” she said. “Of course it’s me. I’m the one she’s afraid of. I’m the one making her miserable. How could it not be me?”

For those of you who are new around here, Katie is my neurotypical twelve year-old. She is bright as a whip. She’s more insightful and intuitive than most forty year-olds. She gets the joke. She gets people. And still, she can’t internalize the idea that her sister is afraid of her cough and not of her. And why? Because the message is clear. The cough doesn’t exist without her. The cough doesn’t walk into a room under its own power and upset her sister. But she does. Katie does.

And right now, simply the sight of her scares her sister because she is the one coughing.

Very little has changed since then. In some ways, it’s gotten worse with time and wear.

Over the years, we’ve tried everything we could think of to make it better, from giving Katie medication for her seasonal allergies to giving Brooke a thousand and one strategies to handle the cough. I promise that whatever you’re thinking right now, we’ve at least researched it and likely tried it. Nothing has worked.

But as we know, while strategies might not change over time, our kids do. We all do. They grow and develop in ways both seen and unseen, filling their toolboxes in ways we might never have imagined possible. And so we circle back to things that didn’t work before. Because the fact that they didn’t work for the us we were then doesn’t mean they won’t work for the us we are now.

Yesterday, I approached Brooke with an idea. I told her that I’d asked one of the therapists at school to help me write up what’s called a desensitization program. “A whuh?” she said. I couldn’t help but chuckle.

I explained, in words that I thought would be accessible to her, that it was a way to make something that’s very hard for someone less hard by exposing them to it a little at a time. I reminded her that we had used this kind of program when she was struggling with the fire alarms at school. “Oh, yeah!” she said. “And I’m not scared of them anymore!” She added, “But I still don’t like them.”

I told her that, just as she had with the fire alarms, she would watch YouTube videos,  but this time they’d be of Katie coughing. I told her the part that I thought was most important and that I’d stressed to the therapist who’d help me devise the plan — that Brooke would have complete control over the videos and their volume. That no one but her would control the sound and that she could turn them off or walk away absolutely any time she needed to, for any reason whatsoever.

I asked if she was on board. “I guess,” was the best I got.

I told her why. Why I think it’s so important for us to keep trying. I told her that Katie really wants to be able to spend time with her, and that all of us really want to be able to spend more time together, as a family.

“And then we could be funny together,” she said. “And because of she loves me.”

“Exactly!” I said. “Because we all love each other. So we really want to get to a place where when she coughs, you ..”

I stopped myself. I wasn’t sure how to finish the sentence. I didn’t want to say, “don’t scream” or “don’t cry,” or “don’t hurt her feelings.” I wanted to frame it differently, positively, to make her understand that we weren’t trying to “extinguish a behavior” but rather address the challenge that created it. But I didn’t have the words.

” … can be okay” she said.

I took a deep breath.

This kid never, ever ceases to blow me away.

“Yes,” I said, “That is EXACTLY it. We really want to get to a place where when Katie coughs, you can be okay. So what do you think?”

“I think that too,” she said.

She had two requests: that Katie make the recordings in the car and that they be voice memos on my phone, not videos. Since I’m a little slow on the uptake, it took me a minute to realize that the location request was to ensure that she wouldn’t have to hear her coughing in real time. As for the voice memos vs. videos, I can only assume that they are less overwhelming and easier for her to manage without the added sensory onslaught of the visual piece. She wasn’t able to tell me why, but no matter the reasons, I was happy to oblige.

Later, we talked to Katie. Together. She told Brooke that she’d be happy to make the recordings. She asked if she wanted her to add in some silly sounds, just for fun. Brooke said, as she often does, “Surprise me.” Katie promised that she would and proceeded to make a horrible noise as though she were vomiting. It was gross. And Brooke laughed.

“I’d really like it if we could hang out together, Brooke,” Katie said.

“And be funny together,” Brooke added.

Katie smiled at her sister. “Yeah,” she said, “We could definitely be funny together.”

It might not work. Or maybe it just won’t work … yet. But no matter what the result, the conversation itself is staggering. The idea that we could talk about it, that we could come together around a common goal, that we could tweak the process to make it more comfortable before it even began – my God, y’all, I still can’t believe that this is where we are, lifetimes away from where we began.

“I have a sister named Katie,” Brooke said. “Sometimes Katie needs to cough.”

I smiled. “Is that from the social story Ms Jennifer wrote for you in preschool?” I asked.

“I do not like when Katie coughs,” she continued. “It is okay to not like the sound of Katie coughing. Maybe Katie has a cold, maybe she has a scratchy throat, or maybe she swallowed too fast and she feels like she needs to cough.”

“You remember ALL of this?” I asked, incredulous.

She went on, undeterred. “Coughing is a good thing,” she said. “It can make Katie’s throat feel better. It is okay if Katie coughs. I do not need to worry or be afraid of the noise. It is okay if I don’t like the sound of Katie’s cough. I know that when Katie’s throat feels better, she will stop coughing and the noise will be all done.”

I marveled at my girl. At every word of a story written eleven years ago, preserved in perfect order in that beautiful, steel-trap (or, if you prefer, autistic) brain.

“If I do not like the noise,” she continued, “I can whisper, ‘All done cough,’ I can still do what I was doing. Maybe I was playing, or maybe I was eating. Soon Katie will stop coughing. Mommy and Daddy will be so proud of me when I am quiet when Katie coughs. They can give me a hug or a kiss or a high five. Hooray for me for being such a good girl.”

Along with the words she recited, I now heard, in stark relief, the ones that we hadn’t yet written.

“I can’t believe you remember that whole story,” I said.

But of course I can.

How many times do I have to relearn the lesson that my daughter hears and sees and remembers EVERYTHING – and that she always has? That she’s recorded this process of evolution and development, both hers and ours (neither, I’d argue more dramatic than the other) since day one. That she sees the patterns we miss, the respect we misplace, the mistakes that we make, time and time again.

That she gets the joke and can tell it better than any of us in the end. And that while she doesn’t always have the words to tell us what she knows in our language, she’s always waiting patiently for us to catch up, and, in the meantime, teaching us hers.

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{image is a photo of Katie and Brooke on the Fourth of July}

8 thoughts on “a common goal

  1. Brooke and Katie are amazing. Now might be an opportune time to add to the social story, beginning with something like ‘Katie wants to be able to spend more time with me because she loves me and we can be funny together. I am trying to learn to be ok when she coughs even though I don’t like her cough.’ I’m anxious to hear how the desensitization attempt goes. Baby steps!

  2. I still struggle with the sounds of someone clearing my throat. I’m 34 and it’s still something that makes me feel the need to leave the room.
    It sounds like such a small thing, but it sets every bit of panic going, and every nerve ending stands on end. Good luck Brooke

  3. Jess, I’ve really missed your blog post but I know that you have so much on your plate. I remember the original post about the cough. It is so amazing how our kiddos grow and change even if it is at their own pace. I hope this works out for Brooke and Katie. Pinky hug to Brooke.

  4. Hi Jess! My autistic 11 yo reacts the same way to coughing (and other sounds, too). It’s called Misophonia. Sorry to say there’s pretty much a concensus among people w Misophonia that exposure to the offending sound makes it worse. The thinking is that the usual mechanism for habituation is somehow impaired. Thought you might want to know in case Brooke is dealing with Misophonia. It’s quite different than SPD or a phobia and is not treated the same. I’d gladly provide more info if you want to look into it!

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