SPELLERS is Breaking Nonspeakers Out of the Prison of Misunderstanding

I finally got to see the award-winning documentary that so many people have been raving about. SPELLERS is mind-blowing and heart-opening.

Based on the JB and Jamie Handley’s extraordinary book, Underestimated: An Autism Miracle, SPELLERS offers us a long-awaited introduction to Aydan, Evan, Sid, Maddie, Jamie, Vince, Cade, and Elizabeth - eight nonspeakers who found their voices through a groundbreaking communication process using letter boards called Spelling to Communicate (S2C).

Bring tissues. Skip the mascara. And prepare to let your heart break open - you’re going to need to make space for these miraculous new voices.

SPELLERS demonstrates just how capable these nonspeakers are, now that we finally have access to their wisdom, compassion, humor, observations and dreams.

Behind the stimming and the silence, are intelligent, alert and capable human beings, who hear everything we say and have keen observations about the world around them. It would serve us well to listen and learn.

Staying on the Learning Curve

We got it so very wrong about the non-verbal autistic community.

Thankfully, some of the world’s most underestimated human beings are also among the most patient, resilient and forgiving.

We were the ones who didn’t get it. They understand… they’ve always understood. And they are willing to spell it out for us and pave the way for other nonspeakers. These people are gifting us with the opportunity to know them better and giving us yet another chance to do better for them.

And we must.

Here’s is my friend, Alexandra Ponsica, explaining how the “experts” got it so wrong and why we need to revisit our approach to supporting our non-verbal autistic community.

You see, speech and language are two very different things. Language is 100% cognition and speech is 100% motor. Receptive language takes place in the part of the brain called Wernike’s area, where information is absorbed and comprehended. Expressive language takes place in Broca’s area, where thoughts and ideas about the information being absorbed are formed. Both of these areas of the brain are fully intact in our non-speaking children with autism and other complex diagnoses – meaning they have no issues comprehending language.

This means our children do NOT have a cognitive disability. Our boys are intelligent, thoughtful and capable of learning.

Instead of a cognitive disability, our children have sensory-motor differences that impact their ability to communicate reliably through speech along with other varying difficulties with motor function. We call this apraxia. Apraxia, often interchangeable with dyspraxia, is a neurological disorder characterized by the loss of the ability to execute or carry out skilled movements and gestures, despite having the desire and the physical ability to perform them. Apraxia makes it hard for people to tell their bodies what to do – often called a brain-body disconnect.

We have grossly underestimated our non-speaking population and we are inherently harming them by treating them as if they have a cognitive disability and aren’t intelligent.

The issues begin with testing. The testing done in the school system to determine intellectuality requires motor – often motor on demand.  For our children with sensory motor differences, this is equivalent to giving Stevie Wonder visuals for an IQ test and then deeming him unintelligent.

from left to right: Noah, Alexandra, Caleb, Jen, Dominique and Me

Alexandra is mom to Caleb and Noah - twin 11 yo boys with Autism who are nonspeakers and spellers. For the last 3 years, she has been sharing the progress they have been making on their letter boards and it has been magical watching their story unfold. She has carefully unwrapped a inspirational gift for all of us, sharing some of the thoughts and feelings of two sensitive, clever, insightful and funny individuals.

And seeing my friend delighting in the fruits of her labor at long last? Priceless.

Alexandra is now on a mission. She is determined to give nonspeakers an opportunity to be heard and seen using Spelling to Communicate (S2C), an alternative means of communication for individuals with autism and other motor challenges. She and other S2C practitioners are revolutionizing the way we interact with nonspeakers by giving them a voice, and she’s starting right here in the Garden State.

Alexandra and her partner, Natalie Vitone, are opening their own S2C clinic, See Me Speak, in Vernon, New Jersey. According to their website:

All forms of communication require motor. This method takes the fine motor out of speech and brings it to gross motor by teaching purposeful motor skills necessary to point to letters to spell. As motor skills improve through consistent practice, students progress from pointing to letters on letter boards to spell to typing on a keyboard. Communication moves from concrete to abstract as motor skills progress. 

Let the healing begin!

Cultivating Miracles

There’s another angle here. One that really struck me, since I have witnessed a number of these journeys. Many of the families who have been engaging on this new communication adventure are also revolutionizing advocacy by integrating the idea of keeping an open mind, focusing on solutions, and engaging in a day-to-day practice of healing.

You can watch more about Alexandra’s transformational journey in this CHD.TV interview. From the interview:

It's not magic… It’s not overnight. It took me about close to three years, because I got pregnant in between… so it kind of stunted our progress at some point. But it is a skill. It’s like learning to play the piano. You can’t play Mozart right away. You have to build up the motor skill.

…so you’re never, never teaching or coaching cognition. You’re presuming competence, that the child understands everything you’re saying and wants to and can learn, but you’re focusing solely on coaching the body and coaching the motor to be able to express themselves.

…And when they finally started to say things for the first time, and express themselves and tell me how they were feeling, it changed everything. EVERYTHING. And I feel like my relationship with them has gotten so much better and it’s just like we can take over the world right now because they are getting autonomy over their own body and their lives back. And I get a chance to get to know them for the first time.

Advocates Who Do the Heart Work

Alexandra Ponsica, JB Handley, Kevin Barry, Susie Olson Corgan and parents like them are also advocates, working hard to spare others from the suffering they have witnessed. They have been bringing awareness to vaccine injury, calling out corruption and fighting to protect our parental rights and religious and medical freedom. They have been writing books, sending letters, giving testimony and reaching out to legislators. But it’s the internal work, the community-building and the heart work they’ve done at home that have brought about the most profound changes.

These parents have been on this path, trying everything in every direction, falling down and getting up again… for years, sometimes decades. They are regularly challenged to transform anger and grief into something that serves a higher purpose. They are constantly revisiting their “why” - checking their intentions, rooting back into their hearts and their families. They have learned to be grateful for small wins and recover from big losses. Their lives are immersed in the sometimes excruciating work of tempering the fight for their lives with the loves of their lives. This requires hope, perseverance and endless patience. It’s cultivation.

And now they know that it’s a labor of love that their children have witnessed and understood every step of the way.

The reciprocal gift of being seen and the hope of finally being understood. The opportunities for redemption and forgiveness. That’s what Spellers tapped into. It’s what these parents have spent years and decades trying to access. And it’s the kind of healing we need to be cultivating in every realm.

If you want to find or host a SPELLERS screening, visit https://spellersthemovie.com/

If you want to support Alexandra as she continues to cultivate miracles, visit her website here.