no more than a hiccup .. on SPDBN

*

It all started when my friend, Alysia mentioned that she was looking for submissions for the Sensory Processing Disorder Blogger Network (SPDBN), a wonderful community page full of stories, resources and support for families who live with SPD. That’s all it took.
.

Suddenly I was on a train, zooming through the backwoods of memory, blithely admiring the greenery just before the wreck.

Words flew by my window, pulling me back to the places they were formed.

Brooke loves the beach

The water

Salty and heavy and thick

The sand

Warm and gritty

She lays down in the sand every chance she gets, extending her arms and legs

Making angels of a sort

The mud

Soft and wet and dense

Clumpy on her hands

Her legs, her shoulders

Everything has its own wildly different consistency

She loves the variety of textures

Rubs them into her skin

She runs through the dry sea grass

She shimmies into the middle of it and lets it scratch her skin

Like a cat

(from Diary, August, 2008)

It’s funny, but the train flew by the more obvious depots – the restaurants, the headphones, the screaming babies, the wildly failed attempts at family breakfast – none were even visible from where I sat.

Instead, I watched incarnation after incarnation of the beach scene – a tactilist’s wonderland each and every one – with their glorious textures, wide open spaces and intense temperatures. My girl is never freer than when she is at the beach.

My heart ached with the sweetness of the those moments.

And then, without warning, a God- awful screech and the train lurched to a stop in a heap of twisted metal. My heart raced as I struggled to look around and take stock of the wreckage.

i sit on the floor of brooke’s room

her head is cradled in my lap – her long, lean body sandwiched between my outstretched legs

i look at her upside down, searching her face helplessly

i desperately hope i’m not hurting her

but she keeps pressing my hands harder, harder, then harder still into the sides of her head

she is shaking

i impulsively wipe a tear as it slowly drips down her cheek

she screams

panicked

“NOOOOOO!”

wiping the tear took my hand from her ear

she grabs it and swiftly replaces it to its station

“YOU WOULD HOLD MY EARS!” she yells

the tension in her voice is palpable

i press my legs around hers

“sorry, baby. i’ll hold them now. don’t worry, i’ve got you little one”

i hold her body in mine

it’s all i have

to protect her from the demons

**

katie stands on her sister’s bed and peers behind the headboard

she shakes her head as she calls out to us in a sing-song

“nope, she’s not here!”

she is trying to help her sister find the latest stuffed animal to have been swallowed whole by our house

katie is so eager to help

her selflessness nearly kills me …

To continue reading this post, please click over to the Sensory Processing Disorder Blogger Network.

I’ll see you there.

(Don’t wait too long; train’s leaving ..)

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8 thoughts on “no more than a hiccup .. on SPDBN

  1. I wonder if she doesn’t like the uncertainty of hiccups in herself and she doesn’t like the uncertainty of knowing when/whether Katie is going to hiccup or not. Or even the feel of hiccups – perhaps she had some at some time that scared her and that is what she is remembering. (the empathy thing again)
    With our son, we spend a lot of time saying “M has gottttttttttttttttttt hiccups”, trying to catch the hiccup with the word hiccups and he laughs and seems to forget about the hiccup, or starts to look forward to it coming.

  2. Cymbie loves the beach too! Anything with texture. it’s often the best way to calm or distract her. This blog was tough to read. Painful. It reminds me how vastly different all our kids are. Cymbie does not struggle with sensitivity to sound or touch…but her challenges are equally difficult and painful for me, if vastly different from Brookes. It’s the worst feeling in the world…to be helpless to help take away their pain. Cymbie doesn’t have the verbal skills to tell me what’s wrong, and I (who should be able to fix everything) am helpless when she screams and cries and I have no idea why.
    I feel for you, and for your baby…so deeply. I share your pain as a Mommy.

  3. I swear I should know by now to keep a box of kleenex close by when reading your blog!! You tell it with such vividness that I find myself there with you willing the overload to be overwith…. Thank you.

  4. I finished reading on the SPDBN and commented there, but I had to comment here, too, because this is so beautifully written. Thank you for providing perspective. Sending warm energy your way.

  5. This breaks my heart, I’ve been there in a way, battling the panic behind the hiccups. For us it is when he gets them and when they won’t stop, the panic, the worry, the chest pains as he seizes more air in than his lungs can handle. Or the times when his big brother gets a really bad case of them that seem to last forever and he hides in his room begging my oldest to stay out until they’re gone. Truth is no matter what we’ve dealt with here so far, we have nothing on this and it tears at my soul that something like this spirals her world out of control. I agree with joeysmommy, I really do need to be close to the tissue box and yes, I too felt I was there next to you, helpless. It’s crazy that everyone here can feel the pain, to know this many people who can identify is comforting but sad.
    My friend I can offer you no more than online support and ears to listen, I do hope that’s enough…

  6. I love the poetic quality to your posts and am interested in following you on twitter & this blog! I am a special Ed teacher with experience with children on the autism spectrum and need help spreading the word. There are many tips and strategies for parents of special needs children. Check it out, subscribe, and share! My newest post is all about SPD and deep pressure ideas. http://www.tips4specialkids.com

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