no more than a hiccup

July 12, 2011 by in Anxiety, Autism, Avoiders, Siblings, SPD with 26 Comments

**

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

‘don’t worry, brooke, we’ll find periwinkle!’ she says

so sweet, so sincere

god, i love that child something fierce

there could not be a better sister

for all her foibles

(and yes, she has foibles)

she is a wonder

i don’t want to hurt her

i don’t want her to carry the weight on her shoulders

ever

i don’t want her to know that getting her out of the room is the one thing that can ease her sister’s distress

but i’ve got to separate them

she hiccups again

and hell breaks loose

a hiccup – something that should be so small

hell, the word’s secondary definition is ‘a minor difficulty, setback or interruption’ – no worries, it was just a hiccup

yet not to brooke, whose entire sensory system is under siege

she jams her knuckles in to the backs of my hands, trying to force more pressure onto her ears

i wince

she is hurting my hands

i don’t care

**

“we’re ok babe,” i say, “it’s ok”

i say it to myself. i know better than to say it aloud

she hates, the “it’s ok”

for years, it was what i said

without knowing

YEARS

now it’s a silent mantra

it’s as much for me as it it would have been for her anyway

it always was

she needs me calm

so calm it is

i stuff the fear and the sadness and the rage

it’s all i can give her

all i can do

and i’ve got to do something

**

katie hiccups again

brooke kicks against my legs

her whole body tensing against the attack

she lets out an involuntary shriek

and presses my hands harder into her head

**

luau is getting ready to go run an errand

he’s got to go pick up the car from the shop

“hey, katie”

i’m trying to sound cheerful

it rings false

i sound like an overly enthusiastic host on a kids’ variety show

katie’s on her belly on the carpet now, searching for periwinkle between brooke’s mattress and the trundle-bed below

her solicitousness is almost more than i can bear

“sweetie, why don’t you get dressed and go with daddy?”

she cranes her neck to look at me

her nose is scrunched in pre-teen disdain

“to the car dealership? ewwww”

“it’ll be fun,” i say

she must know i’m full of crap

but i keep trying

brooke is breathing hard. her face is red. she looks as though she’s just run a marathon

“you’ve been saying you’ve wanted some alone time with daddy! you can – um, be alone in the car with him!”

god, i’m lame

luau comes running in, having heard the latest scream

“you guys ok?” he asks, breathless

i will him to understand

to see the desperation behind my casual words

“honey, i was just telling katie how much fun it would be for you two to go pick up the car together!”

he looks at brooke

he looks at me

it all makes sense

thank god he gets it

he nudges katie into her room

“c’mon, kiddo, come with me! it’ll be fun!”

i mouth a silent and grateful ‘thank you’

**

after they are gone, i carry brooke into my room

she’s exhausted

and so am i

i let her turn on the tv

we settle in to watch together

diego is saving a lemur, or a tree frog, or something

i can’t manage to care

she lays across me, her head nuzzled into my neck, an arm across my shoulder

finally, calm has come

the storm has passed

**

hiccups

nothing more than god damned hiccups

i want to scream for my girl

i want to shake a fist at the sky and ask how on earth any of this makes any sense

i don’t

i look down at my baby

i stroke her hair

i wrap both my arms around her and squeeze

she says one word

‘love’

‘yes, baby,’ i say in return

‘love’

and silently i add

‘we’re ok’

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About diaryofamom

Jess can be found at Diary of a Mom (http://adiaryofamom.wordpress.com/) where she writes about life with her husband Luau* and their beautiful daughters - ten- year-old Katie*, an utterly fabulous typically a-typical fifth grader, and eight- year-old, Brooke*, a loving, talented, hilarious third grader who has autism. ** not their real names ** She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit 'Like' and probably now wonder what they got themselves into.

    Comments

  • Cat


    This is absolutely beautiful. Thank you.

  • Spectrummy Mummy


    This is so moving. For a long time my son was the defensive one, and I had to protect him from his sister who can’t control her volume. Now the roles are reversed, another mystery of sensory processing dysfunction. I’m sure things will switch up again at some point, another hiccup to deal with. Thanks for lending your voice here.

  • dawn


    Wow. Beautiful… and a page right out of our life and our home. Thank you so much for sharing this ~ oh insightful, powerful, calming mom!

  • Y'vonne


    Heartbreaking and lovely all in one. Thank you for sharing…((hugs))

  • nikki


    This post touched me. I’ve never met you but I could hear your voice through your writing. Your story brought to mind times that similar (albeit much less severe) instances have occurred in my own home. Thank you for giving a voice to the vulnerability, as well as the strength, that we parents all share.

  • Jaimee


    So wonderfully written…I was practically holding my breath as I read. I’ve had that “we’re ok” mantra silently through my mind many times, desperate and pleading, and the sadness that simple things, like a hiccup, are not so simple for our family. Thank you for sharing this.

  • Stephenie


    Thank you for sharing this. Watching a child meltdown from sensory overload is so hard. What a great mom you are to handle it so well.

  • Patty


    This brought tears to my eyes. It was especially timely. Yesterday morning, I took my son (with SPD and autism) for an EEG (we’re starting neurofeedback and they have to do this test first). All he had to do was sit there with a cap on his head and little clips on his ears.

    Every part of this experience was like torturing the kid. He detested the ear clips (which I knew would happen–he can’t stand anything touching his ears), he said the cap hurt his head, and when the nurse had to get cream inside the little holes of the cap (using a stick, which she gently probed with), he screamed in pain. The nurse was shocked. She said she could tell he actually was in pain, even though she barely touched him. I gave her a little lesson in SPD.

    Anyway, then he had to keep his eyes closed and stay still for 10 minutes. That was the worst part of all. He cried and cried.

    And on the way home, I cried. Can’t anything just be easy, once in a while? Normal?

    Thanks for sharing this!

    • Meghann Baynon


      Patty, my lil SPD boy has epilepsy. We have to sedate him for his EEG’s. We tried, once, not doing sedation, but it was a nightmare. : ( I can totally empathize with you. *hugs*

  • Meghann Baynon


    To echo what everyone else said: moving and beautiful. You truly captured what and overload feels like, not just for Brooke, but for us parents as well.

  • Aimee Velazquez


    Welcome to the SPD Network! So nice to see you here. Such a touching piece you have here, as always. I find it so hard to protect all of my children as well when those times arise that simply require space between them. It’s particularly hard with two kiddos that just love on their brother so much physically that it sends him into a tizzy of screams. And it seems that no matter how much I explain and model, that brother/sister dynamic just emerges and ends in shrieks. It’s a continual battle.

  • Rachel


    Oh, the hiccups. Large and small. They can cause a brief disruption or bring the world to a halt. I am so sorry that your precious babe was in such pain over something so uncontrollable and otherwise benign. Your strength is undeniable. Your love is UNDENIABLE. Your girls know this. They KNOW YOU and THAT is what makes the demons go away and lets peace return :0)

  • Mom


    I remember this post as though you had written it yesterday. It is so poignant and I still find myself reacting in the same way.

    I love you,
    Mom

  • Chris


    This is beautifully written, and heartbreaking. Thank you for putting to words an experience that so many of us will never understand. You provide perspective for the rest of us in that way. My child has different needs, but to all the parents here who know all too well what Diary of a Mom has described here, I send my love.

  • Joy


    Heartbreaking but beautifully written. Thank you for capturing an experience where I’m sure many feel frustrated and alone. And having read this, they will know that they’re not…Thank you.

  • Heather


    Beautifully written. Thank you for sharing.

  • Kristin K


    This post brought tears to my eyes and to my heart. What beautiful writing of such an amazing story to share with us all.
    The ‘siblings’ in our house struggle as well and its so hard when we don’t want to frighten them or make them feel bad for simply being children, but it happens without us realizing we are even doing it.

    Thank you for sharing your story with us… it certainly has motivated me…

  • The Informal Martriarch


    This post made me cry. So many times I’ve been in Their room with them, Isaac so small and Silas a mess. Holding Silas tightly, trying to keep Isaac away from his brother. Trying to get him out of the room.

    Grabbing Isaac and running to the bathroom to lock Silas out, knowing everyone is safer this way.

    It sure gets ugly sometimes.

  • Kristen F


    This brought tears to my face. I have had similar experiences and it touched my heart to read that I am not the only one who wants to scream alongside my daughter and shake my fist at the sky but instead I paint on my brave face.

    Thanks for writing this!

  • Lisa


    Hearbreaking because it’s true and beautiful because it’s a shared experience…

    One thing that helped my SPD son when he was 6 & younger was to hold his backside against my my chest and then put my arms under his knees and then draw his knees up so that he was in a kind of fetal position with his body pressed against mine. I got this tip from an OT & it saved us multiple times from complete & utter chaos.

    Now that he is 9 and only about a head shorter than me, it doesn’t work but he verbalizes his discomfort much better so we can be even more proactive.

  • Jenny


    You are amazingly strong. I know we’ve all been there–holding it in to help our children make it. My son screams at his brother, but for louder noises than a hiccup! I am so sorry. I don’t know what else to say, tears are running down my face. Thank you for sharing so maybe others not in our shoes will get just a glimpse. And I’m glad he understood. ;)

  • swatee borkar


    Thank you for sharing. You have a gift.

  • martianne


    This is a powerfully written snippet of the real life so many might find unreal if it were not shared. Thank you.

  • Paul


    Thank you.

  • Erin A.


    I cried as I read this, I could see clearly the picture you painted. I prayed hard for your daughter, you and your family and will continue to do so. My little girl lives with demons, too, and it breaks my heart day after day. May God be with you always…

  • Trackbacks

  • Trackback from hope, meet reality « a diary of a mom
    Friday, 29 July, 2011

    [...] buddy from school. Thank God it had been her. . Baby girl was struggling. Julie explained that Katie had gotten the hiccups. Brooke had melted down. It had been hours, but the effects were far from gone. The night had been [...]

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