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. I could tell you all about how Lindsey sketched Schuyler’s mantra “No more hiding” in lovely script on her arm, and copied a 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. 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, that fact most of all was extraordinary.

I’ll tell one last story with a photo.

Community of Souls

“I thought I was the only one.”

It was a surprising thing to hear from Schuyler. It never occurred to me to think that she really believed she was all alone with her Polymicrogyria, and on an intellectual level, I know she understood that she wasn’t literally the only person in the world with it. But it wasn’t hard to understand why she would feel that way, or why she now understood just how very untrue that feeling was.

She quietly made that statement to me as we sat at the Polymicrogyria Family Conference in Denver last weekend, listening to the keynote address by Australian writer, speaker and life coach Natalie Roberts-Mazzeo. Natalie has been writing about her daughter Chiara online for a number of years at Chiara’s Journey and Miracle Mama, and her keynote address to the conference was powerful and deeply moving. More to the point for Schuyler, however, her story of her five year-old daughter with PMG felt very, very familiar.

All the stories we heard felt familiar. And it was in that familiarity that the real value of the conference could be found.

I’ve written about PMG a great deal over the years, so I won’t go into it too much here. It’s not as rare as we believed it was back when Schuyler was diagnosed in 2003, when her doctors found fewer than a hundred confirmed cases, but it’s still rare enough that we are unlikely to even meet professionals who know about the disorder, much less another person with PMG, unless it’s at an event like this one. Schuyler’s sense of uniqueness and perhaps even isolation has grown out of having friends with their own disabilities like CP or autism that come with a community. It’s hard to be different; it’s more challenging to be different even among the different.

But this weekend, almost two hundred Polymicrogyria family members converged on Denver, including about thirty young people with PMG. And just like that, Schuyler was among her people in a way that she’d never experienced before. She was the oldest with PMG, if I’m not mistaken, and honestly, the one with the most subtle impairments. I think she noticed that. I watched her empathetic nature bloom as she played hard with the younger PMG kids. They adored her, and she loved them right back. She was everyone’s big sister, in a way that was a little bittersweet.

It was bittersweet because we always thought Schuyler would be a fantastic big sister. When we were warned that there was likely a 1-in-4 chance that another child would have PMG and that it would almost certainly manifest itself less gently if it recurred, however, we made a hard choice not to have any more kids, and we never discussed it again. That was thirteen years ago. And that was that, until the doctor who diagnosed her casually mentioned during his video presentation on the ongoing research into PMG that for kids whose PMG manifests itself like Schuyler’s, the cause isn’t genetic.

That was hard to hear. That’s all I think I want to say about that.

We gave our presentation on the last day of the conference, and while I think my part went pretty well (aside from a Marco Rubio-style dry throat moment), it was Schuyler’s presentation that landed with particular impact. It’s not hard to understand why. The word “inspiration” is problematic at best in the disability community, and I try to use it sparingly. But when families and people with PMG looked up and saw a formerly non-verbal kid like theirs sharing her experiences and her thoughts and dreams using speech technology, and when they met her and saw how well she communicates now and the promise of her future, I think they were reminded of possibilities that have been perhaps hard to believe in.

We’re not the only ones who have felt isolated and alone with Polymicrogyria. We’ve all sort of marinated in the dire predictions and the dark prognoses that come with a PMG diagnosis. We’re not the only ones who had this mouthful of syllables attached to our children and then sent out into a world that wasn’t prepared for them or for our questions and fears. There’s no promise inherent in Schuyler’s manifestation of PMG, no suggestion that her fate is going to be anyone else’s. But it’s important to remember that all the dark predictions that most PMG parents seem to get upon diagnosis were the same ones we received all those years ago. Schuyler doesn’t represent the future to anyone, but perhaps she suggests possibilities, and that’s not a small thing.

I’ve presented at many conferences and gatherings over the past decade, and they’ve all changed me, made me a smarter and more empathetic person. I’ve been profoundly fortunate to have these opportunities. But this was special. This was family. I met devoted parents, including a bunch of extraordinary fathers, and I was privileged to meet their beautiful kids. And it is my most sincere hope that the growth and the community that we all felt for one summer weekend in Denver won’t dissipate as we return to our lives, the ones we all lived before but which now seem transformed.

There’s work to do. I have no doubt at all that these families, this one newly minted large family, will get that work done.