I have started a collective poem recently hoping that it might help other people have a small window into what it may be like to experience the world as a child or a person with neurological differences. I cannot understand but I can try… this is only what I imagine it may feel like… I hope that others add to this, their experiences with their child or for themselves. When I watch my son move through the world and see the look of confusion and sadness on his face when he understands he is missing something… a nuance of a social situation, when he sees the look of frustration on my face or on the faces of the adults around him my heart breaks a million times over… wanting for him to feel connected, to understand… longing for others to take a moment to want to reach across the divide and understand with patience and compassion what is happening for him.
I invite anyone who would like to add to this, add lines to the poem, moments of reaching across the divide…
Can You See Me … Hear Me … Listen To Me … Understand Me?
Salt shaker lid falls off in the sauce… eat it anyway…
Perfume isle at the department store…
New plaid wool shirt…
Cheap new sheets…
Burnt popcorn…
TV section of an appliance store on a Saturday full of customers, all TVs on full blast…
Your child calling your name while you are on the phone…
Rubber cement on your hands…
Moments after a new haircut on the back of your neck…
Sunset in June in the woods without bug repellant…
One mosquito in your tent… at night… all night long….
Someone brings you coffee and adds or leaves out the sugar/ cream…drink it anyway…
Eat a food you dislike most in the world…
Spend 6-7 hours a day in a language immersion program… the cashier at the drive through misunderstands your order and is annoyed with you…
At a party where you know no one and everyone speaks a different language…
You wake up relieved you were just having a dream and then crash into the memory that this may be a small glimpse your child’s world…
Alicen Willis, 7 y.o. son, ASD
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A Wild Child
Burst of energy into the room
Sparks of excitement flying from my eyes
Playful banter
“I ‘m here!”
“See my pose!”
“La la la, I’m singing now.”
“Do you see me?”
“Are you there for me?”
“It’s too noisy!”
“Stop talking!”
Emotions boiling over
Like a pot of pasta on the stove
Loud, sticky, messy
Decrease the heat
Take me to a calm, quiet place
And hold me
Sing to me
Until all is calm inside me again
Joanne Giacomini, 7 Year old son, ASD
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I want to be me
I got to move
I got to stand
Why do i have to sit
I got to move
I got to stand
so I can be
So i can learn
So i can eat
Why do i have to sit
I want to be me
Lise, mother of 2 dyslexic ADHD great kids 23 and 10 y. o.
friend, wife, president, employer, coach, desperate for support
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Shadows, shadows on the wall
I love you all, big and small
Doors, doors they open and shut
To me, they look like little huts
Poles, poles tall and short
I wish I can hide them in a fort
Numbers, letters I love them all
I just want to be loved and never fall
Naureen, mother of a 3 year old with ASD