July 30, 2018

The Few Things

There’s a lot I could tell you about Schuyler’s trip to Gold Coast, Australia for the 2018 International Society for Augmentative and Alternative Communication (ISAAC) Conference, where she took part in the Dare to LEAD workshop for selected participants who use AAC technology to communicate. There are a great many stories to tell about our trip.

I could tell you about the sense of adventure that accompanied a trip to the other side of the planet, or about Schuyler’s joy in discovering all the differences both tiny and significant between the US and Australia.

I could tell you all about how she finally got to meet my friend Lindsey Paden, and how in an instant, Schuyler didn’t just have a new friend, but family; Schuyler fell hard for Lindsey, and the feeling was mutual. I could tell you all about how Lindsey sketched Schuyler’s mantra “No more hiding” in lovely script on her arm, and copied her own symbolic speech bubble onto my finger, and how the next afternoon, we celebrated Schuyler’s workshop by having both these sketches made permanent by a very cool Maori tattoo artist.





I could describe the conference sessions we attended and the talented professionals we met.  I could tell you my own feelings of renewed advocacy and my own continued commitment, already fired up, to helping build an inclusive, meaningful and authentic advocacy movement.

I could even tell you about Schuyler’s first legal drink (18 in Australia).

There’s a lot I could tell you about our week in Australia. But there’s one thing I can’t tell you very much about at all.

I can’t tell you about Schuyler’s leadership workshop itself. I wasn’t there.

It wasn’t for me. I didn’t have a place at that table, one where AAC users were discussing ways in which to advocate for themselves in the world. And Schuyler, my darling little baby girl who has inconceivably transformed into a young adult, didn’t need me there. She was able to handle herself entirely, and contribute and participate, without my help. I watched her improvise her way through an introductory speech she didn’t realize she needed to give, and then they broke for lunch. And I was gently shooed away.

Which is absolutely how it should be.


Schuyler’s advocacy has been growing over the past few years, although in a sense I suppose it would be impossible to really mark its beginning. She’s always been the most qualified person to tell her story. But this trip changed things for her. Suddenly it wasn’t me pushing her gently from the nest. There were other hands waiting to catch her when she took flight. A week after finding her Polymicrogyria family, she found her larger community, too.

She was ready.

So of all the stories about this past week I could tell, I think I’ll simply leave you with this. We went to the other side of the world and had a transformative experience, one that filled and grew our lives and our hearts. And I had that experience not with a child, not with the little girl who has inspired so much worry and so much wonder, but rather with a confident young adult. And that is not a small thing. In a week full of the great things in my life, a week where I found once and for all the few things I could build my world of, that fact most of all was extraordinary.

I’ll tell one last story with a photo.


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