well now they know

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{image is a photo of Elsa and Anna from Frozen, arm-in-arm.}

As many of you know, Brooke has some sensory triggers that can be extremely challenging for her. Crying babies, smoke / fire alarms, and her sister’s cough have always topped the list.

For years, we’ve worked to help her to minimize the trauma of each of these triggers. We’ve tried to help her to contextualize them: for instance, to see what it might mean when a baby is crying or what we might be able to do to help calm them.

We’ve helped her to understand that smoke / fire alarms serve an important purpose and help to keep us safe. We’ve given her access to noise dampening headphones at school and ensured that she knows that she can always leave the building immediately with an adult if necessary. We found smoke alarm videos on YouTube (because you can find anything on YouTube) and given her full control of the volume, encouraging her to raise it ever slowly in order to desensitize her to the noise.

The cough has been more challenging. We’ve tried to explain it. We’ve written short stories and created entire books, pictures and all, talking about why Katie might cough.

Over the years, we’ve brainstormed a thousand strategies to make it better: Katie leaving the room to cough (which is not exactly feasible if we’re, say, driving) and Katie coughing “Ho Ho Ho” like Santa to try to make her cough funny (yes, seriously, we were desperate).

We’ve tried teaching Brooke to cover her ears, hum, cough WITH her sister to block out the noise, say, “All done cough.” There’s more, but please just take my word for the fact that there isn’t much that we haven’t tried.

Nothing has worked. My baby girl feels like she’s under siege when her sister coughs. And Katie feels shunned and hurt when Brooke runs out of any room that she walks into. As their mama, I’m desperate to make it better.

Recently, we turned to Brooke’s school team for advice. (We’ve asked every team every year, so one more couldn’t hurt, right?) They came to the house and got a feel for what was happening, then came up with a suggested plan for us to consider. I read it quickly last night.

I’m going to stop here and say that I need to read it more closely. That Luau has a different take on it than I do. That there is a good possibility that I’m overly sensitive based on a whole lot of history and that my concerns are actually addressed within the plan. All of that is possible, so by no means is what follows meant to be an indictment of the plan or of those who thoughtfully and carefully created it. But for the purpose of this post, it kinda doesn’t matter. Bear with me, okay?

I talked to Katie about the plan. I told her that I wanted to discuss it with her because I wanted her to hear my thought process. I told her, as I just told you, that my reaction was preliminary, but that the plan itself wasn’t the point. The way that I was thinking about it was.

I told her that as I’d read it, something hadn’t felt right. That it appeared to me to be focused only on eliminating Brooke’s response to the cough, rather than on giving her the tools that she needed to manage the effect that it had on her. I told her that I was concerned that it looked as though the plan was designed to reward Brooke for making our lives more comfortable without making HER more comfortable.

“I’m telling you this,” I said, fighting a losing battle with the tears that were now starting to fall, “because I need you to understand how important it is to look at any therapy with a critical eye – whether it’s for yourself or maybe someday for your sister, if something in your gut doesn’t feel right, listen.”

I paused to gather myself, then realized it was pointless.

“I’m going to need you to look out for her,” I said. “So heed your inner voice. Ask questions, figure it out. Don’t ever, EVER be afraid to tell any doctor, therapist, or so-called expert that something, no matter how small it may seem to you, doesn’t feel right.”

“Yeah,” she said, “it sounds like we’re saying that her disability is more tolling on us than it is on her. That’s messed up.”

“EXACTLY!” I said. “We all deserve to be comfortable. You do and she does. One shouldn’t come at the expense of the other. And they don’t have to.”

“Cause neither one is more important than the other,” she added.

“YES!” I shouted before I realized I was shouting. “And tolling isn’t really a word int his context, by the way, but YES!”

“Takes a bigger toll,” she said, the roll of her eyes barely visible to the untrained eye.

“The thing is,” I said, “we need to figure out how to make Brooke feel safe. Not just ignore the fact that she’s terrified while we train her to stuff it all inside.”

“Like, Conceal, don’t feel, don’t let them know,” she said. “And we all know how THAT worked out. She froze the whole friggin country.”

“Oh my God,” I said. “Exactly.”

 

 

 

 

 

 

 

10 thoughts on “well now they know

  1. Oh Jess! I so needed this today! My son and I have been at each other’s nerves for weeks and I just could not get this gut wrenching feeling out of my head, something is wrong! You reminded me that his actions are telling me something is off inside HIM and I need to figure out what that is. He is trying to tell me something! Now I need to find a way to HEAR it. Thank you, yet again, for sharing your families lives with us!!!! I feel my own blog post coming on!!!!! Thank you!

  2. I love how well Katie just gets it. She always gets it. You’re raising a couple of amazing kids, Jess. They are going to change the world one day (even though I kinda feel like through you, they already are). 💗

  3. This is the skirmish I’m having with our school team right now. How to make my kiddo feel safe and heard while giving him the tools to deal with the triggers. “Suck it up” just isn’t going to work, hasn’t worked.

    Is it just Katie’s cough that bothers Brooke or all coughs? For my kid, it’s sneezing. Any sneezing.

      • I want to start off saying that I do not have an autistic child and am hoping that my comment doesn’t come off as insensitive or rude. NOT my intention at all! Is it possible that your coughs bother her because she feels that you all are “hurt” and she can’t help you get “unhurt?”

  4. It is nice to see that you are so concerned about your daughters feelings. Sometimes, I do think changing a behavior first can change the way you feel about something. For instance, I “run” every other day and about half way threw it I am not absolutely hating it anymore. 😉. Seriously though, sometimes looking at something threw a purely behaviorist stand point can help.

  5. I love it when I go back and re-read your posts. I learn something from each one, and not just from you. Katie is such an old soul(I say this with utmost respect and it is meant as a compliment) and understands things many adults don’t! I tend to over-analyze things but she just gets it! That’s awesome! I learn from Brooke as well. She has taught me that one general diagnosis from a Dr is not written in stone. She does so many things her earlier Drs said she never would. You and Luau make a great team and have 2 amazing daughters. Thank you for sharing them with us. I
    don’t known your religion, so this comes from my heart. I hope you and your family have a very Merry Christmas, (Happy Hannukah?) and Happy New Year. Please give your Dad a big hug from all of us adopted kids that he didn’t even know he had! May I add one more thing? I will be saying some extra prayers for you all as I know you will be missing Grandma Noe even more during this holiday. She will always live in your hearts but I know you won’t be able to help but feel the empty seat at the grown-ups table. Try to enjoy your family time. You all deserve it! 🎄✨🌟✨🎅🏼

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