11.13.2013

This is autism (for us)

There is an uproar happening right now in the autism community. I seldom get involved in uproars, I'm more of a pacifist than a revolutionary. But, even this pacifist has limits. After reading the latest release from Autism Speaks, an organization which proclaims to represent autistic people's interests, I literally felt as if someone punched me in the gut. What is this I am reading? Thinly veiled anti-autism propaganda, feigning sympathy with the caregivers (never the autistics themselves) the piece broke up each fear-mongering paragraph with the sentence "this is autism".

Well- it isn't. You know that meme "if you met one person with autism, you met one person with autism"? Same can be said for each autism family. So I thought I'd write a bit about what autism is for Sophie and her family.

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Every morning we are greeted by a footsie pyjama-clad bed-head standing by our bed gently tugging at our pillow, urging us "up, up, up". We pull her in between us and relish in the warm preschooler cuddles until we are ready to get up (she could lie like this for a long time).

This is autism

She herds us toward the living room and looks at the tv expectantly. We oblige putting on Thomas the tank engine (we have long given up trying to switch it up). She plops into her zebra-print chair and we go on to get her and her siblings' breakfasts ready. Peanut butter and jelly sandwich eaten in front of the tv. We would love her company at the table and try to encourage it gently, but ultimately allow her to have her breakfast alone (or with Thomas). We will work on it gradually.

This is autism

After breakfast I dress her and wait for her bus to come pick her up. Unlike her siblings, she goes to a special school and gets picked up by the bus. Also unlike her siblings, she absolutely loves her school and runs out happily to meet the bus. Her school is a "different" school, but her unique needs are met there and she is thriving. While we might have been a bit sad she won't follow in her siblings footsteps we realized she is embarking on a path which is solely her own.

This is autism

Twice a week she goes to more therapy after school. She has had more doctor's appointments, hospital visits, EEG's, MRI's, blood work, specialist consultations and so on (and on) than all her 3 siblings combined. Her bravery and ability to roll with the punches and enjoy these visits leaves us amazed and swelled with pride every time.

This is autism

She is different from most kids. She doesn't play with toys in a usual way. She loves to sort through sensory bins and look at the world upside down. She looks through the window and at the trees for a long time with an absolutely serene expression. She teaches us to see the beauty in everyday sights and sensations- wind, trees, water, sky... and bubbles.

This is autism

She might not speak. But she will communicate. She is learning PECS (and rocking it!) and will be transferred to a digital device when ready. I believe she has the ability to learn to read and type and I will shift the earth trying to make that happen.

This is autism

Yes, we worry. We worry because she is at the risk for developing seizures. We worry whether she is treated well at school and anywhere else we are not with her. We worry if she will be able to connect with others, be fulfilled. We worry if we will be able to help her reach her potential. Mostly though, we worry that the damaging portrayal of autism in the media will cause people to turn away from her, judge her. Or worse yet- be afraid of her.

This is autism

She isn't missing. She isn't gravelly ill. She isn't a burden. She is one of four siblings, not more or less important, or more or less difficult than any of them. She is loving, cuddly, silly, active, stubborn and amazing. We will not break, our family won't fall apart and we will support her as long as she will need us to - because she is ours.

This is autism

Thoughtful, quiet, dreamy, kind, autism

 

 

6 comments:

  1. love to you- well put, and as always, sounds very much like Nathans days :)

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  2. Love this! Hate the toxicity of the other post from autism speaks.

    -Angie

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    1. I know. Spreading love and positivity to banish that- maybe that's why I like your blog! :D

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  3. you are so right - love your post and love your sweet dreamy child
    Cannot believe what Susa Wright said

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    Replies
    1. Some people can't see beyond their own misery and its their choice. Projecting their feelings as the universal experience is wrong though. Love you guys too - there's a lot of beauty in the world.

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