“When the day of the nativity was passed, the Star ascended up into the firmament, and it had right many long streaks and beams, more burning and brighter than a brand of fire; and as an eagle flying and beating the air with his wings, right so the streaks and beams of the Star stirred about.” And we are told that the three wise men, named Melchior, Balthazar, and Gaspar, are the kings of “Ind, Chaldea, and Persia.” They only meet on the outskirts of Jerusalem having traveled from their own lands “in great haste” and without stopping. And so they reach Bethlehem and present their gifts.
~ Adapted from Historia Trium Regum
In 2008, this is what I wrote on Christmas day:
They met in the desert and continued on their journey together – From far away lands, they spoke different languages, had different customs, carried different gifts. But they shared one thing – an unshakable belief that a child would change the world.
To all of the incredibly wise men and women that I have met since this journey began -
I cherish our new-found friendship. I have learned so much from each and every one of you. I have been carried to new heights by your love, your support, your understanding. These have been the greatest of gifts.
My heart is full. Not just with the joys of the season, but with the knowledge that we will continue on our journey together.
The words hold, but their meaning is different now. In 2008, I thought that it was us – the mothers, the fathers, the siblings, the ones who love our autistic children and sisters and brothers – I thought it was us who would lead the world to understanding. Who would tell the story of autism and reveal the truth. I hadn’t yet seen the star that would guide me – that would take me on a long and winding journey right back to my child – to all of our children.
Last week, my copy of Loud Hands – autistic people speaking arrived in my mailbox.
In truth, I bought it mostly for Brooke. I wanted her to have it someday, when she is ready. I wanted her to know that there is a community that awaits her with open arms, a community of strength and love and support and down-to-the-marrow understanding of her experience.
Over the weekend, I began to read the book. I got no farther than Julia Bascom’s foreword before I couldn’t breathe.
When we first started exploring the concept that would grow into The Loud Hands Project, we knew a few basic things. We knew that the autistic community is comprised of terrifyingly brave and resilient people; that the autistic community has many things to say and is perfectly capable of saying them in our own ways with our own voices; and that there is something beautiful and powerful about a community of people who are routinely silenced, abused, neglected and murdered, yet who continue to survive, finding and nurturing one another and growing in strength and purpose, year after year. We knew that there was a need to honor this collective and individual strength, beauty and voice, and project it out further into the world to reach those who didn’t yet know that other people like them existed, and tell them that they were fine.
I quickly realized that I’d need to order a second copy for Brooke. This one was – needed to be – mine.
As parents (no matter what flavor), we have a sacred responsibility to our children. We are charged with arming them for the world they will face. With filling them to the brim with love and self-confidence and the tools to be good people in a not always so good world.
But when our children are autistic, that responsibility takes on a whole other life. How? How do we give our children the message that while we want to help mitigate their challenges, allow them to communicate with a world that nearly always refuses to meet them halfway – a world that consistently dismisses their voice in a conversation ABOUT THEM – how do we make sure that they know that while they may be in need of help and patience and accommodation, that for the love of God they are WHOLE and PERFECT and HUMAN and CAPABLE and TALENTED and LOVED and LOVING and worthy of RESPECT? I know, that was barely English. I don’t care. Because, well, HOW?
We have to figure it out. There’s no choice. We have to because this, as Julia makes so painfully clear, is the truth …
One of the cruelest tricks our culture plays on autistic people is that it makes us strangers to ourselves. We grow up knowing we’re different, but that difference is defined for us in terms of an absence of neurotypicality, not as the presence of another equally valid way of being. We wind up internalizing a lot of hateful, damaging, and inaccurate things about ourselves, and that makes it harder to know who we really are or what we can and cannot do.
If no one ever acknowledges that we have a voice, we can forget how to use it. We might even decide not to.
This is the truth that we are fighting when raising our beautiful autistic children. The internalization of the message that they are not whole - that their wiring and their experiences and their feelings and their thoughts and their very humanity are somehow less than. Less than what? Less than they could be? Less than ours? Less than what? But isn’t that the message? That they are LESS?
My fellow travelers, we’ve found our star. Our guide. And it starts with this …
We are complete, complex human beings leading rich and meaningful existences and deserving dignity, respect, human rights, and the primary voice in the conversation about us.
I’m going to be blunt. I know that many of you will dismiss these voices for one reason – the same one that I did early on. The one that I recently heard crassly articulated thusly: “If they can write their thoughts, then they can’t know my child’s experience. If they can communicate in such a way – any way – so as to make themselves understood, they might as well be telling me what’s it’s like to have a paper cut while my kid is a double amputee. It’s not the same.”
The voices in this book are spectacularly diverse. Some of the writers speak orally; some do not. Some could, if they so desired, pass as neurotypical; for some, that is an outrageous impossibility. They are as different from one another in gender, ethnicity, perspective and ability as .. well, as you and I are from each other. They occupy vastly different spaces on the spectrum. And they each have something different to say – Gifts to bring – To our children. And to us.
The star that will guide us- it is the autistic community. It is their voices, their perspectives, their experiences. Above all it is their humanity, in all of its brilliantly full dimension reminding us of our children’s. It is right many long streaks and beams, more burning and brighter than a brand of fire; and as an eagle flying and beating the air with his wings, right so the streaks and beams of the Star stirred about guiding us as we guide our babies, helping them to build that impenetrable wall of self-esteem that will carry them through the storms.
This is what I wrote to Julia yesterday,
I can’t tell you how grateful I am for this book — for all of the work that went into it and for all of the perspectives shared within it. I am incapable of expressing how much it means, as the mother of an autistic child, to have so many voices guiding me along the path as I do everything I can to raise her into a proud, confident adult who knows and loves exactly who she is. And for her — the gift of knowing that this community – this brilliant, vibrant, loving community awaits her — well, that’s everything.
This book is long overdue.
And it came at just the right time.
Merry Christmas, my friends.
To order the book, click HERE.
Excerpts used with permission. Thanks, Julia and Ari!