what I would tell you

I have so much to tell you, yet the clock ticks its disapproval as I sit down to type. I don’t have time. Somehow there’s just never time.

If there were, I’d tell you how excited I am that Brooke wrote a book for us. That’s right, for US. I would tell you about how I’ve been trying hard to make sure that both of the girls know that if they ever want to write anything that the keys to Diary are theirs, always, and how yesterday, I had the incredible joy and honor of watching Brooke create a book and how, just a page or two in, she said, “Are you going to put this on the blog?” and I said, “only if you want me to,” and she said, “Maybe, maybe a little,” which is her latest version of yes, but I’d tell you how I wanted to check and make sure because, well, language is language and spoken words are not always reliable nor meant to be taken at face value in our world and so I said, “Are you making the book to go on the blog for everyone to read?” and she said, “I am.”


{image is the cover of the book, The Turtle King, by Brooke}

And I would tell you how awesome the book is and how it has something for everyone from a princess to a cop to a superhero turtle who uses magic powers to get the princess out of jail and how when Luau looked at the book this morning, he said, “Hmm, it seems to be lacking a single thread,” and I smiled and said, “Actually, the thread connecting it all is inclusion,” and how I went on to explain that she had created the character list before writing the book and had, despite the vast diversity of the cast, managed to get each and every one of them into the book in some meaningful way. Yes, that’s definitely what I’d tell you.

And I would tell you that I had a moment last night, in the vortex somewhere between midnight and two a.m. when I began to frantically write and what I wrote made about as much sense as one would expect (which was not much at all) but how there was this kernel of truth in the words that went something like this:

And I need you to know that I don’t take what I have for granted. I want you to know that to be true even on the days when it feels like I do because I have the audacity to ask for more. More for my child, more for my family, more for the entire human family who so richly deserve the participation of each and every last one of its members. Every one.

And how I went on to say, 

We’ve got to start at the beginning. I say it again and again but we’ve got to start prioritizing innovation in communication. If AAC is the infancy of alternative communication, of technology as a gateway to a common language, then by God, what does the science look like as it matures? What are we not thinking of yet?
What are we not thinking of?
And I would tell you how I rambled on and how I started thinking some of the fabulously outlandish things that one can think in the midnight vortex like, “Why don’t we have a reality show?” There are talent competitions for singers and rock bands and chefs and cupcake bakers, there are shows to find love and not-really-love but close-enough-to-love, and there’s So You Think You Can Dance and America’s Got Talent and I Want to Marry a Millionaire (yes, that is actually a thing) and for the love of God, why can’t we have a competition to find ways to help people to communicate? Why can’t Ryan Seacrest hand out golden tickets to Silicon Valley, where a lucky few will compete for the resources to build a common $%#@ing language?
Yes, this is the stuff that happens after midnight.
And I want to tell you how, speaking of common language, my friend Barb posted the meme I’d made out of her precious, life altering words:
{Image is a graphic with another quote from Barb. Barb is non speaking. And has a lot of pretty amazing things to say.“We are not hiding. You search with limited senses and therefore our humanity is camouflaged to you.

Be still. Be quiet. Be. We notice you on the glacier. We observe you completely. Language presentation is the barrier to our friendship — not sentience or intellect.

We do not speak your language but you can speak ours. Be still. Be quiet. Be. And now be with us. Our silent and invisible language is that easy to learn. Feel it?

Welcome. Our friendship has begun.

Barb Rentenbach”}

And how she’d done that thing that she does where she goes and adds the perfect morsel, like a beautifully wrapped gift, that makes you think and hope and believe and damn it all KNOW that more is possible and how when I asked if I could share her words she said, “That’s why I write,” and how, for the millionth time I just wanted to hug her. I would tell you that this was what she’d said:
I often write that I study history to know what is probable. I also study history to know what is possible. Consider Lewis and Clark’s boundary mission, “Corp of Discovery”. They were able to circumnavigate great falls by the Shoshone Chief Cameahwait connecting with his sister, Sacagawea in Shoshone who then spoke to her French Canadian husband, Charbonneau, in Mandan who then talked in French to Jusseaume (another interpreter), who communicated to Lewis and Clark in English. Gifts were exchanged and everybody got what they needed.
And we’d all sit here with our jaws on the floor repeating, “Gifts were exchanged and everybody got what they needed,” and we’d be trying to figure out how to make this the theme of April, with all of its fear and anger and hand-wringing electric blue for boys angst, how to make this:”Gifts were exchanged and everybody got what they needed,” the theme of all that we do,  every day, always. 
The clock looms large and the time has slipped away.
But if I could, that’s what I would tell you.



8 thoughts on “what I would tell you

  1. And, I would tell you in return that I hear you and that the world you and your family (and the one extended by commonality) have opened to this old woman grows daily…and I am constantly amazed at how little I knew and how little I still know and how much more there is to learn and I thank you for that.

    Inclusion….I very much like this word. I will tell you I wish it had been part of my mental vocabulary as I struggled with an “out of the box” child who, though not autistic, had challenges of his own that often have made him not quite fit. It was not until he was in grade school that I began to wonder why the children also like him were forced to fit the box rather than finding ways to reshape that box even just a bit. It was not until then that we (he and I and a very, very few teachers in his school) began to look for ways to stretch that box into something with fewer hard edges. Often over the years he has had to mentally realign that box when it could not be done externally. He is still different but struggles less with that as an adult than he did as a child. For him, perhaps, it was enough and he learned to appear to fit without completely submersing the beautiful (to me) differences that make him who he is today.

    As a parent, I wish the awareness had been there then, but I am grateful to see what HAS changed in the decades since he was small that now benefit my own grandchildren as well others who don’t fit into the neat little pigeon holes society has constructed.

    Thank you, once again for your words and those of the bright souls with whom you share space.

  2. That story about Sacagawea is great because it reminds us how precious communication is. We take it for granted, that we can talk and other people will understand, and at the same time we spend a lot of time not really communicating. Sometimes we talk just to hear ourselves, to assert what we believe. Sometimes when we don’t immediately, easily understand other people, we give up. And we still call it all communication because people are talking. But being able to really understand what someone else is thinking and how they see the world, is incredibly valuable. It’s something that we have to carefully build and protect, even when we already speak the same language. It is a miracle and a blessing, in the way that a seed growing is ordinary and natural but also a miracle.

  3. my own language of no words is most familiar to me, of course… But it is no use to feel a word entirely if I can’t reshape it to a spoken word for others to hear or read. When I jumped into this advocacy stuff, not knowing all it would become, I did so with a mind to bridge that translation gap. I have learned so much in the six years, and most importantly I’ve learned that I need to spend much of my time in my home base view and with my autistic community. But… I still have a heart not just for parents but for families. There is so much, so very much my family didn’t know and still doesn’t, because it is arduous at best to figure out what things my spoken words have failed to convey and then finding the typed words to connect their interpretation to my intention–here is what you saw, but here is what I really meant, thought, felt. As much as I cannot speak for any population, being one person, my goal is one thing that hasn’t changed. There are many times I cannot understand the NT view of a thing. There are other times, rare occasion but it does happen, that my patience for an autistic person’s attitude or behavior wanes. But there are still plenty of times I can help in building a bridge. Maybe, with the OT and the teacher and the siblings and any number of others, we form a train like Lewis and Clark had to be able to understand those crucial words. No one was failing, they just lived through different languages. We aren’t failing either when we don’t understand from either Nt or autistic perspective. We just need to open up the common ground to understand each other. That’s what translating does.

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