the perfect addendum

In September of 2014, I wrote the following post. It was hard to write then and it’s hard to share now. Not because I don’t believe it to be true – I do, fervently – but because I worry that I’m not the one who should be saying it. But I am. Because this time of year more than any other I’m asked, “If not on chasing a ’cause’ or a ‘cure’ for autism, then where would you spend our research dollars?”

This, among other places that I’ll detail at another time, is where. And the addendum at the end of the post? That’s why.

Screen shot 2014-09-23 at 6.45.21 AM

{image is a photo of Brooke standing on Luau’s shoulders on the beach in Newport, RI. She looks as though she is flying. Photo courtesy of Connerton Photography’s magic lens. All rights reserved.}

During the talk, Dr Draper asked a ten year-old girl to come to the stage. She asked her her name. The girl said her name was Alex. She asked her to get up and walk around in a circle. She did. She asked her to do some simple addition. She did.

“Clearly,” Dr Draper said to the crowd, “Alex is very bright.”

And then she whispered some instructions to Alex. She told her that she was now unable to move on her own or speak. She folded her arms and her legs in front of her, as Melody’s would have been.

She asked her her name. Alex smiled up at her in response. Dr Draper looked at the crowd and said, “Oh, isn’t that sad? She doesn’t even know her name.” She asked her to walk in a circle. She didn’t. She asked her some simple addition questions. Alex made the same noise each time. The audience giggled.

And Dr Draper said, “Nothing has changed except Alex’s ability to tell us what she knows. But now, she has gone from being a bright kid to someone we laugh at and whom we feel safe to assume knows nothing.”

It was an extremely powerful moment.

From Listening, October, 2013

I’ve been struggling with what I’m about to say for a while now. I know what I want to say, but I really don’t know how to say it. Or, better said, I don’t know how to say it in a way that I could have heard it when we were beginning this journey.

You see, when we started on this road, all I wanted – all I could imagine wanting – was for my daughter to be able to use words functionally. I yearned for her to tell us what she needed and wanted. I dreamt of her telling us what she felt and feared and loved and hated and hoped for and what SHE dreamt of.

I could imagine no other way of her doing that than by talking to us. Because that was all I knew.

Eight years later, Brooke is held up as a success story because she is, at eleven, talking .. and talking and talking and talking. Her speech, while still predominantly scripted, is ever more novel, ever more creative, and ever more functional outside the sphere of those who know her well enough to connect the dots.

Able to better express her needs, she is less anxious trying new things. It makes sense. If you know you have the ability to be understood when you say, as she did at a fundraiser this weekend, “I need to go outside of here. It’s too overwhelming,” then you’re far more willing to give it a shot.

So yes, Brooke is absolutely a(n ongoing) success story.

I understand completely when parents new to this road say that she offers them inspiration and hope. She should. She has defied expectation at every step. She has shattered every, “won’t,” and “can’t,” and, “we just don’t see these kids … ,” that we encountered along the way. She has taken the air out of nearly every negative and limiting stereotype we’ve heard.

So great, let her inspire you as you refuse to allow your own kids to be boxed in by those whose limited imaginations prevent them from seeing what’s really possible.

But I need to say a few things. A few qualifiers, as it were.

Firstly, Brooke is no less autistic than she was before the words came. She is no less autistic now then she was when she was chasing cobwebs in the corners and I was chasing my tail, not knowing how to help her. She is no less autistic than she was when she was first diagnosed.

And that’s okay. It’s even more than okay because there are parts of autism that are pretty amazing for her. Her singular and abiding love for the things that make her happy. Her unmitigated and uninhibited joy. Her unabashed ownership of her own space, hers to fill with laughter and life, no permission needed. Her view of the world as it truly is – raw, unvarnished, authentic. Her ability to make us all see it that way too.

The hard stuff remains — the stuff that I feel less and less comfortable talking about as she gets older. She is autistic. There will always be hard stuff. And yet, still just as autistic as she was before, her life looks – and, in many ways, is –  entirely different now than it was so many years ago.

She can ask for help.

She can say, “I’m scared.”

She can say, “I need to leave.”

She can say, “I don’t understand.”

She still struggles mightily. She still, and may always, need a lot of support. And yet, she is happy more often than she’s not. She likes herself. She likes being autistic. The two are not separable. She is autistic. She is herself. She likes herself, therefore she likes being autistic. It’s a pretty simple equation.

That last paragraph? That’s the success. Not the fact that she’s gotten there by communicating verbally. The fact that she is happy.

Being able to communicate effectively and reliably changes everything. But that doesn’t necessarily mean talking.

And this is the part where I know that I need to tread really carefully, because I know, I know how hard it would have been, how angry and indignant I would likely have become, had someone told me eight years ago that Brooke might never speak to communicate and then had the audacity to follow that up with an insistently hopeful, “But that’s okay because it might not be her road to success.”

And I get that I’m probably also not the best one to deliver this message because, well, I talk and my kid talks so what the hell do I know? And I get that. But I’m saying it because I worry that a lot of new parents out there are so convinced that Brooke’s is the only path to communication that they’re missing opportunities to help their own kids find theirs, whatever it might be.

My friend Barb is non speaking. She has written two books, blogs, and has just started, of all things, a radio show.

My friend Amy is non speaking. She is a beautiful writer and a respected and renowned activist / advocate and world changer. Among myriad other positions, Amy sits is on the boards of the Autistic Self Advocacy Network and the Florida Alliance for Assistive Services and Technology

I hate to go here because, cliché, but, well, this guy doesn’t speak either and I think it’s pretty fair to say that he’s made an impact on the world.

What they all have in common is the ability to express themselves in ways other than verbally.

It’s not always easy to find the method that will work for each individual. Sometimes it appears to be impossible. Or we find something that works but it’s infuriatingly limited. “I want …” with a list of one’s most commonly consumed foods is a great place to start, but it’s not going to mitigate the frustration that comes from not being able to reliably convey everything else. Including, “the food I really want isn’t even on this list.”

It’s heartbreaking. And the more I see and the more people I spend time with who struggle with severe communication challenges, the more I believe that not being understood is one of the most pressing root causes of what we stubbornly call “maladaptive behaviors.” (Physical pain, sensory overwhelm and emotional dysregulation being others on Billboard’s Top Ten.)

When we can’t make ourselves understood, we become frustrated. When we become frustrated, we “act up.” We may become aggressive. We may scream. We may hurt ourselves or others. When we then get reprimanded (or, as is often the strategy in behavioral therapy, purposefully ignored) in response to our frustration, the cycle escalates and can ultimately becomes unbearable.

Every human being deserves a way to communicate. And I believe – truly, down to my toes believe, that everyone, and I mean EVERYONE, can. I also firmly believe that there are both high and low tech solutions yet to be imagined that will change the game completely for many of the folks who have yet to find a method that works for them. The potential is limitless, but we’ve got to prioritize the search. Now.

If I were Queen of the World, I’d be yanking MITs graduating class out of Silicon Valley and shoving em into tech labs, then incubating the crap out of AAC start-ups. What haven’t we thought of yet? It’s tantalizingly close. And we have to find it.

Because our autistic friends and loved ones, whether or not they have words, have thoughts and feelings and opinions and hopes and fears and likes and dislikes. Because they have nightmares and dreams. Because they deserve a means by which to share them. And because we are all better for it when they can.

Because being able to ask for help, to convey, “I’m scared,” to ask to leave, to say, by whatever method you might “say” it, “I don’t understand,” changes everything. Because to be understood, to be heard, to have choices in life, a say in your destiny, a voice in your own advocacy … is everything.

Talking is one means of communication, but it’s by no means the best.

And it sure as hell ain’t the only path to success.

Today I add the following, from my friend, Jeneil and her beautiful daughter, Rhema.

And then I asked her, “Rhema, what do you pray for? Can you tell me?”

I really don’t have words to describe what happened next. It’s a moment that has changed me and changed our family forever, I am shaking and laughing and crying as I write this. Four words. The first sentence she has ever spelled for me…

And I wondered if anyone would believe me when I told them about Rhema’s prayer. I wondered if I would believe me.

So I grabbed an iPad to record her. I asked her to spell it again, and she did.

This is her prayer.

This is His answer.

“I HAVE MY VOICE.” ~Rhema, age 11


10 thoughts on “the perfect addendum

  1. So happy to see Rhema writing via RPM. If you are interested in observing Soma working on Long Island, she will be here May 21 & 22. It really is life changing.

  2. I have been following your page on facebook now for a few months, after stumbling upon it from a shared post from a friend. I first want to say that the way you share the ups and downs, the highs and lows, the biss and the struggles of day-to-day life is truly remarkable and I am sure is so powerfully impactful to all of your readers. I am not a parent, but my day-to-day involved working with families closely to see the strengths in their beautiful children while helping them do even more. I am SLP in a startup company where we all are trained and passionate about implementing the proper tools and supports for children with severe communication needs; AAC is what we live and breathe but we could not have said it better than you. We all believe that all of our children DO communicate, even before they walk through our doors for their first evaluation; their mode just may be a more unique or less mainstream than the expected “speech”. Thank you for sharing, thank you for accepting, and thank you for being so insightful into the many ways our kids are amazingly awesome!

  3. I have been following your blog for years now and remember what you have written about beautiful Rhema from time to time. The video that you posted was just beautiful and it just really made my morning. Thank you for sharing that.

  4. I am a huge fan of your writing, and have followed your blog for a little over a year now. Inspired by you and reading blogs written by autistics, I posted the following on my local Autism Awareness facebook support group Autism Walk conversation. “I don’t feel comfortable supporting Autism Speaks or wearing blue. There are other great organizations such as ASAN or Autism Canada. Can we wear other colours?” I am struggling with how to respond to the response I got. One of the organizers said that I was getting hung up on politics. She did say I could wear another colour, that it was about local awareness, not fundraising, and that they would appreciate my input next year. The local walk has a blue puzzle piece logo. I am unsure how to move forward. Am I being too political? How do you maintain positive relations with other autistic parents who don’t understand where you are coming from?

    • I think it’s great that they said they’d like your input next year. That’s an inroad. And sure you’re being political – politics are that which concern a community. Too political? No. You are championing autistic people. Keep at it. 😉

  5. I could barely watch this through my tears. Tears of joy for Rhema and Brooke, as well as hope for my boy. Your words are so powerful and ever so inspiring..

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