This week H will be co-presenting with me at the BCTELA (British Columbia Teachers of English Language Arts) Provincial Conference. He says he feels good about doing this – as do I. It is going to be wonderful adventure and I am almost at a loss to express how very proud I am of my son. Together we are making a difference.
It seems timely to be revisiting this story of H’s presentation at Arizona TASH in January 2013:
In front of the entire conference stood a 14-year-old boy. He’d eaten little during lunch – perhaps it was nerves – but more likely it was the lack of anything the least bit palatable or familiar to his tastes. However, he had taken multiple bags of chips from the lunch buffet, and had them placed around his spot at the table like a small crispy fortress. I considered admonishing him that this was not a healthy lunch – that he couldn’t eat all those chips.
Instead I leaned in and whispered, “You are going to be fabulous!” and he favoured me with a glance and a shrug and then returned his focus to his iPad. I somehow convinced him to wipe the tiny traces of dorito-red from around his mouth without heightening his anxiety – or revealing mine; a layering-in that is never helpful.
Then it was time for the keynote address. He rose… and headed to the podium where he was being introduced by his good friend, mentor, and fellow self-advocate, Laura Nagle. I wondered fleetingly if he would change his mind… but up he went.
Now he stood there – tiny white remote in hand – waiting for just a moment – before he plunged right in. He caught my eyes right then – and I gave him my barely perceptible you-can-do-it smile and nod combo. In that moment… the room was silent – waiting.
Then he began, with a voice a little deeper than it was 5 months ago, reminding me that adulthood is perched on the horizon. He spoke with a growing confidence as he gained momentum, and clicked his way through the slides of his presentation.
H opened with:
Dear Teacher: A Letter From H
Sometimes I make mistakes…
I need you to help me…
He shared about his sensory experiences
Sometimes I hear everything at once… and a lot of noise is overwhelming
When I listen to music I hear everything at once… that is great for listening to music
– but it can be hard in a classroom.
Hearing everything in the classroom means that:
Sometimes I could hear everyone in the class breathing and it went over the sound of the teacher speaking
This makes me anxious…
I need you to understand that this doesn’t mean I wasn’t listening… or that I was misbehaving.
He explained the intensity of his emotions, and talked of anxiety, resilience, communication, friendship, special interests, and more. He talked about his experiences and perspective and expressed what it is he needs from others in terms of support.
I need you to encourage me to stick with it… this gives me the message that I can do it and that you believe in me.
Your actions give me messages that teach me about resilience
I need you to notice the little things I do right instead of the little things I do wrong
His message was powerful:
I am a kid right now… but someday I will be a grown-up
Please help me build understanding in our world…
As he finished there was a huge applause…
And then, as H looked about a little uncertainly, the room entire went astonishingly quiet…
He sat down again behind his crispy fortress – perhaps not quite understanding the full measure of his message and the almost reverent response to the enormity and power of his offering.
And too… I recognized his quiet stance of pride and empowerment.
The silence was expectant – and his unassuming response perhaps almost anticlimactic. Clearly people wanted more: to talk to H, and interact, and share their appreciation… but he was done. People were sensitive to this and gave him the space he needed.
I again leaned in, “You did it! Wow! That was wonderful!”
H seemed a little taller than he had just minutes before, as he single-nodded his head in silent agreement… and he focused once again upon the iPad.
~
Yes – together we are making a difference… but we are not alone in our efforts. There are so many many others who are doing similar work.
This post is part of a blog hop with an amazing group of advocates/activists, and others in the autism, DS, and greater disability community. I encourage you to please check out the other marvelous posts that have been linked up here by clicking on the Down Wit Dat image below.
My friend Jen at Down Wit Dat shares that the blog hop is open to all blogs in the disability and special needs communities: self-advocates, allies, parent advocates, and others.
You are invited and encouraged to share your posts, read the others, and give some comment love.
This blog hop brought to you by:
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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
©Leah Kelley, Thirty Days of Autism (2013)
Wonderful. Leaves me teary as I see and sense what is revealed by the window on our world which you and H here open for us. Situating H in a community has been your work of parenting. Having H work that situation of community is his own magnificent doing. This means so much.
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((Colin)) Thank you – both H and I appreciate your encouragement and support!
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Wow, that is so brave of him! I am a bit jealous and hope that I will be able to help spread the word in similar ways as well. For now, I stick to Twitter and my colleagues.
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Thank you, Petra.
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Yes, Wow from me too. Great work.
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Thank you, Mardra… just three more days! We are pretty excited 🙂
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We are most definitely not alone! Thank you for sharing your post!
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Thank you for sharing your post. I hope someday my son can articulate how he is feeling as eloquently as your son.
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