All The Light We Cannot See*
(*with apologies to Anthony Doerr for blatantly plagiarizing his book title)
Everything you think you know about my kid is probably wrong.
I can say this with confidence, because so much of how we used to see Alex has been proven wrong.
We all see this autistic teenager who talks constantly, but he's usually just asking a lot of repetitive/nonsense questions. He can express his most basic needs verbally (what he'd like for lunch, for example), but he cannot tell us any insights into how he feels or thinks. This leads many people to think that he isn't thinking or feeling much beyond what they hear him say outloud, and they treat him accordingly.
It turns out, he is a brilliant, funny, articulate, sweet, empathetic kid. He has been paying attention and learning his whole life, against all odds. And he can finally show us this side of him, thanks to some amazing therapists who taught him how to spell to communicate.
This post is long overdue. I have shared some of these videos and transcripts with family and some friends, but I'm at the point where I need people to understand my kid isn't what he seems. And if this helps one family out there struggling to communicate with their autistic kid, it will change their lives forever. Seriously. It has changed ours beyond measure.
In the fall of 2015 we started going to Growing Kids Therapy Center to work with Elizabeth Vosseller (the therapist in the video below). She is a modern day Annie Sullivan. This video was filmed back in the spring of 2016 (he has come so far since then!). In this video he is pointing to letters on a stencil board with a pencil; he eventually moved to pointing with his finger on a laminated board with the alphabet on it, and now he types on a keyboard. He is much faster now than in this video, but this will give you the idea:
(This video was filmed in April of 2016. April is Autism Awareness Month, and his therapist told him she thinks it should be called Autism Acceptance Month. She then asked him what acceptance means to him. Watch to see his answer. I've included some transcripts of other things he has told us and a link to more videos at the end of this post.)
stencil letter board
laminated letter board
bluetooth keyboard. I assume you are already familiar with these.
I will write a post soon to explain in more detail how this method works if people are interested, but I am a parent, not a professional. For this post I'll just try to explain the basics as I understand them.
Kids with autism struggle with motor control. The fine-motor control necessary to grip the pencil (or point or type), combined with the gross-motor control necessary to use his arm, help him to slow down and focus. Because his mind is constantly racing, he has a hard time breaking through the distractions. (I heard one autistic explain that his brain's engine revs like a Ferrari while neurotypical people have brains like lawnmower engines!). Spelling his thoughts out, letter by letter, gives him the ability to slow down and focus on what he wants to say.
Alex recently told us that it's like he's standing on the side of a busy freeway; he can see the target on the other side but he has to dodge all the distracting cars to get to it. Because it's so hard to get to that target, the therapist says each letter aloud as he points to them, helping keep him on track. She often keeps her hand raised in his peripheral vision to remind him to keep his eyes up and on the board. After 4 or 5 words he typically stalls out, and then she pauses to write down what he says while reading it aloud (although now that he's typing, we don't need to write it down; we just pause to re-read what he's just typed). This process is slow and it exhausts him.
The other major hurdle Alex has to overcome is extreme anxiety. We are realizing now that SO much of his behavior stems from his anxiety. Autistic people tell us that their autism pervades every aspect of how they experience the world. They are constantly being bombarded by visual and auditory stimuli, in ways that we neurotypicals simply cannot comprehend. This isn't the "I always have to take a Xanax when I fly" variety. This is often debilitating, overwhelming anxiety.
Often when he's scripting, saying the same nonsense phrases over and over again, he is trying to self-soothe because he is feeling extremely anxious. The reasons for the anxiety might not be clear to you or me. This anxiety, combined with the effort needed to concentrate on each letter, is why he cannot just keep a keyboard with him all day and type his thoughts as if he were simply mute. He's not mute, as anyone who has spent 30 seconds with him can tell you. He's autistic.
When Alex first started expressing independent thoughts in these sessions, I would take video and share it with family members. Eventually I stopped taking video and would just save the notes from his sessions, sharing them when he said something particularly funny or poignant. I've shared some of those notes below. I have SO many to share, but I'll try to limit them because this post is already too long! Recently we have had some amazing heartfelt conversations where we've learned how Alex truly feels about a lot of things in his life. I will share some of those insights soon, because they're important for people to hear, and because they are going to lead to some big changes for our family.
I don't want to make this blog post too video-heavy, so I've uploaded some videos to YouTube if you'd like to see them. There aren't a lot, and they're mostly from the early part of this process; like I said, he's gotten much faster using a keyboard. You can find those early videos by clicking here. I will try to get some video of him spelling on the keyboard so you can see how far he has come.
I'll end by saying this: throughout human history, autistic people have been completely and tragically misunderstood. Each generation thinks it has figured out the autistic brain (It's a form of schizophrenia! It's because of "refrigerator mothers" who didn't properly bond with their children in infancy! They are like robots who have no empathy and prefer to be alone!). So far, the experts have been completely and tragically wrong. There is so much we don't yet understand. But this experience with Alex has shown us something that I now know for sure: He is filled with all the light we cannot see.
Things Alex has communicated by spelling (some videos of him spelling these statement are at the link above):
-In case you couldn't watch the video above, Alex answers the question, "What does acceptance mean to you?" He answered, "Acceptance means offering me the same opportunities as the typical kids."
-Alex did a lesson on glitter (really! Glitter dates back to the Egyptians and has had uses throughtout history besides getting stuck in your carpet for ever!) At the end of the lesson, his therapist asked him, "What makes you sparkle?" His answer: "Definitely my sparkle is my Alex charms. Not everyone is delighted by my charms. I am an acquired taste. My Alex charms light up a room if you have the retinas to see my charms."
-When asked why someone might willingly rebel against authority, he said, "Brains need to have a purpose. When my brain has nothing to do, my body rebels."
-After doing a lesson about Chuck Yaeger breaking the sound barrier, his therapist asked him, "What barriers would you want to push?" His response: "I would like to push the barriers to my own limitations. I would want you to help me get control of my insane, horrible clumsy body. Routine things are tough for me. Need to have better control of my body. My best hope is you."
-"My growth in RPM is making my rowdy haphazard body have a purpose."
-After a lesson about superblooms in the desert, he was asked, "What would your superbloom be and what conditions would you need to blossom?" He said, "What is laying dormant in me is self control. I need a fierce lot of patience. I need patience by some firmness as well. I can do this and it will be the most lovely superbloom."
-Would you survive Death Valley? "It's called Death Valley for a reason." (LOL!)
-He did a lesson on friendships using Harry Potter as an example. I told his therapist he has two friends, Jack and Johnston, who come over to our house every week. They've known each other since 5th grade, and they started coming to our house to be part of a social skills playgroup (they don't have autism so they were "peer models"). As they got older we dropped the playgroup, but they still come over every week to just hang out with Alex. They are two of my favorite people on earth and give me hope that the world will be a more compassionate place for my son to live in. Here's what Alex said about their friendship: "My friends are way better than Ron and Hermione because there are so many things that make me unlikeable, but they see past all that. I know when someone hangs out with me out of pity and when they have no interest in me. Jack and Johnston are not like that. I feel their acceptance and their respect for me and I really want them to know my existence is much better because of their friendship."
-When asked, "If you could send a message in a bottle, what would your message be?" "I would like to ask the world to see autistics as thoughtful, intelligent, emotional and capable beings." He then put his head down and looked away, so she asked how he was feeling and he said, "A little sad." She asked if he wanted to talk about it, and he said, "No, it's okay."
-"Are you a master of tactical deception? Explain." He said, "My mouth deceives people. I say wild things but don't want to. It makes me look stupid. The secret is that I am smart."
-After having a rough morning before arriving at therapy, and then him having a hard time settling in, we asked him what was going on. He said, "That bad behavior needs to stop, I know, so bad. But it's hard because my body does no listening, for me it's like they're not connected, and I'm stuck inside banging on the glass in the cockpit."
