fair, redux

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The plan for today is the Radio City Christmas Spectacular with Uncle Paul and his family. When he first suggested it, we were just coming off of our success at Godspell and I felt emboldened to try. But anxiety is running HIGH this morning and Mama’s confidence is waning. *gulp*  ~ Diary’s Facebook Status, Saturday at 7:36am 

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For nearly 2/3 of the first act it was great. And then it, well .. wasn’t – summed up by Brooke shouting, ‘It killed me!’ and Katie sobbing while saying, ‘I just feel like everyone thinks Brooke needs you more than I do and it’s just not true’ (at the same time). Good times. #Don’tKnowUnlessYouTry ~ Diary’s Facebook Status, Saturday at 3:02pm via mobile 

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I’m trying really hard not to live in anger tonight, but truth be told, I want nothing more than to take autism and its best buddy anxiety out to the woodshed and beat the crap out of them both. ~ Diary’s Facebook Status, Saturday at 5:59pm via mobile 

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My friend Carrie likes to say that there are no accidents. That everything happens – precisely as it happens and when it happens, for a reason.

A couple of months ago, my friend Alysia asked for submissions to a site that she manages, the Sensory Processing Disorder Bloggers Network (SPDBN). She was looking to plan for December, which, at the time, seemed like a lifetime away.

I dug through my archives to find sensory-related stories. Heaven knows there are plenty to choose from around here.

The one that Alysia chose was called Fair. I wrote it just after Christmas, two years ago. It’s the story of (yet another) failed attempt to bring Brooke to a movie and all of the emotion that came with it – the sadness, the frustration, the anger – at autism, at anxiety, at myself.

And then I completely forgot that I’d sent it to her. Triage, my friends. If it’s not dying, I’m not remembering it. 

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This weekend, my dear friend, Paul came to visit with his family. On Saturday morning, we would all head out to the Radio City Christmas Spectacular.

I worried hours before as Brooke’s anxiety was already running dangerously high. A week of holidays and back-to-back guests were taking their toll.

I prepped her with pictures and videos of the Rockettes, a video preview of the show, even a picture of the theater we were going to be in. We stocked the bag of tricks – Cheez-Its, ice-cold water, the iPad.

We did everything we could do.

For nearly two-thirds of the first act, it was wonderful. She sat on my lap and wrapped my arms around her when she needed a squeeze. She pushed her face and head into mine when she needed pressure. She used my hands to cover her ears when it was too loud. She munched on cotton candy and a soft pretzel from the concession. It was working.

And then it wasn’t.

Brooke needed out. Quickly. We retreated to the hallway where we would stay through the intermission.

I lured her back in for the beginning of the second act, but we didn’t last long. We headed for our now familiar spot just outside the door.

Three more times we would try. Three more times Katie would tell me that she really needed me to stay. Three more times my heart would break because I couldn’t. Three more times we would head back to our spot.

By the last attempt, we didn’t even try to make it to a seat. We perched on the stairs where I bounced her up and down then side to side. She was desperate, so desperate for input.

Finally there was nothing that would help. She began to cry and we pulled the rip cord for the last time. The family would meet us in the lobby.

As I rocked her on the floor outside the theater, listening to the music build into a crescendo for the grand finale on the other side of the door, I flashed back to all of the other times we’d been there.

It was these words that came to mind,

I suggest going back in to try again. Her mouth opens into a tortured ‘O’. The tears stream down her little cheeks again.

We sit down on the floor to the side of the door and listen. How many times have we been here – just outside a door – listening to the world on the other side? Birthday parties, movies, kids’ shows of all shapes and sizes – too many to count.

They were the words that I’d written just after Christmas, two years ago.

And then these,

Three hours later I am still sitting up in bed. I want to scream. Or throw something. I want to know why it has to be so hard –  why the simplest things – like a movie – have to be out of reach. Why every little thing has to be such a PROCESS for my girl. Why a theater full of kids and their parents can sit happily through a movie without having to plan for every possible contingency. Why my baby’s life has to be HARD. I want to know WHY. She shouldn’t have to struggle. She simply doesn’t deserve hard.

And wouldn’t you know it, those words were from the very post that was scheduled to run on the SPDBN *today*. No accidents, Carrie. No accidents.

PLEASE CLICK –> HERE <– TO READ THE POST IN ITS ENTIRETY.

While you’re there, I hope you’ll take some time to poke around the site. Whether your kiddo is (or you are) a sensory seeker, avoider, or, like mine, a mixed up, mashed up combination of the two, I promise you’ll find something you can relate to. I’ll see you there!

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12 thoughts on “fair, redux

  1. It’s not the least bit fair, Jess. I, too, ‘want nothing more than to take autism and its best buddy anxiety out to the woodshed and beat the crap out of them both’. Yes, you have to keep trying. Yes, sometimes it will work (and often magnificently) and often it won’t. I know, how hard it is for all of you and I hurt for you when it’s hard. It’s not the least bit fair!

    I love you,
    Mom

  2. DOAM, I wish there was something I could say to help you through this, but I am afraid I have nothing more than, One love sweetie.

  3. I have been there so many times, sitting just outside the door with a child in pain. I get it. I especially relate to not being there for my NT son because his brother demands my attention in a different, inescapable way resulting in parental pain for me. Hope today the demons of yesterday can be forgotten. ((Hugs))

  4. I think it’s wonderful that you were selected to submit and be featured on SPDBN! It’s also wonderful that you share so much of your lives and what you go through with so many people – I am sure your posts are a HUGE help to other families out there who feel like they are alone in the battle against Autism.

    The battle that rages inside the head of a child like Brooke is so unpredictable, so you have to be prepared for anything. You definately do the right thing – what’s best for her at all costs. If that means sitting outside the door and listening, so be it! Well done, Mom! Even many parents of children with Autism don’t fully understand the battle that rages inside their little heads – one day the battle could be quiet and you can get through movies/shows with little to no issues… and other days the battle rages so violently loud that the only thing that will do is snuggle on the sofa while watching the menu screen of their favorite Teletubbies DVD…. and YOU get that and I commend you!

    Keep doing what you do!

  5. No accidents. Absolutely.

    Thank you for once again opening up your experiences for all of us to share and nod and say, “Yes. I know this all too well.”

    Love you.

    Proud of Brooke – she made it through quite a bit of the show. That’s huge this time of year with everything else going on. Huge.

    xo

  6. It isn’t fair. Our kids try so so hard…especially this time of year. Like the person above said, Brooke did great, considering all of the other things that bombard our kids this time of year…

    I, too, know what it’s like to feel your heart splitting as you try to handle meltdowns, pleas for your attention from siblings, and maintenance of your own sanity at the same time…and I can offer another, “me, too”. It doesn’t help much, I know, but it’s what I’ve got…oh, and some hugs…I have plenty of those, too.

  7. I am right there with you. Many times we don’t even bother to try…bc we already know how it will end. It isn’t fair. It sucks. And I wish I knew why the world has to be so hard and so hostile to our kids, when it’s just so simple and easy for every one else. I HATE it.

  8. It was the Christmas parade that reminded me once again how hard this Autism life is.
    My daugher wanted to go as a family. My son said he was too uncomfortable (yes, I am thankful for him able to voice his anxiety). He said he didn’t want to hear the loud noises (semi-trailers blaring their horns), it was at night (he hates to be away from our house once it gets dark), and the people Mama (so many people, crowds overwhelm).
    I went with my daughter. As we walked to the parade, we held hands and shed tears together as she so wished that her brother would want to go to the parade as a family.
    I looked around at all the families laughing and shouting “Merry Christmas”. My wish to Santa – please make lives easier for the siblings, for the Mamas, for the Dads and for our delicate, sensory-overloaded autistic children.
    Merry Christmas – may we all find some peace this holiday season.

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