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It’s human to change your mind. To look at new information or old information in a new light and decide you no longer feel the way you once felt or add additional layers to what you currently feel.
We have to allow each other the opportunity to grow into better versions of ourselves and that includes…changing our minds.
I shared something, was informed it was wrong for reasons I respect and understand but then I questioned the entirety of something that was so very important to me and based wholly on my life.
I reacted quickly and swiftly because that is what I felt was necessary to do. In hindsight, it’s important that we sit on heavy things (not forever though) to gauge the appropriate response. However, we live in a time where ppl expect accountability to be quick and right now. Including myself.
I didn’t even know if what I did was actually wrong, I just knew that the perception of my hurting anyone was more than if I was actually hurting anyone.
I even mentioned in a comment that if I hurt even one person, that would be too many, that would be too much, and I would do what I did. I would admit my wrong, apologize profusely, make the commitment to not do it again, and then work on myself.
For one person.
In a world of billions and in a world where I am advocating for more than one, with more than one story…I was going to change my whole self, disregard my own feelings…for one.
That is good in theory. That’s that stuff you talk when you want to run big game. Sound good. And I sounded damn good.
But it ain’t sustainable. Balancing tending to the needs of the many versus your own feelings is difficult in advocacy. Yet I am trying to perform this dance daily. It’s not feasible for me, at all times, to give my all to one over the many. No matter how good it sounds and how good it feels.
But I have done it. And I will probably do it again in the future. I am just saying that there are times when I can’t. Or won’t. And shouldn’t.
If I ever doubted my writing abilities, after that apology post, I don’t doubt them any more.
I knew I was a hell of a writer when I not only convinced myself I messed up royally, but I convinced my audience I did as well. I literally twisted myself into a pretzel trying to justify why it was okay that I enter my son’s world the way I do and others could not.
I neglected another real life example of my doing what we do in real-time and didn’t share it because I didn’t feel like it was worth it anymore.
Like it didn’t matter. Like we didn’t matter.
And then I sat in community with friends. And family. Shared a lot of tears. A lot of pain. Anguish. I was distraught and depressed. I cried all night. And the morning held nothing but tears for me as well.
And with those talks and those tears I learned, I matter. My story matters. There was a reason I shared our life this way. There was a reason I wrote this book.
Because it is real and it based on our lives.
I had 600 words, one title, pictures, and a one page Author’s Note to send a powerful, nuanced message. That was it.
I had to challenge the reader from the start, entertain them, open their minds to the diversity in our human bodies, give little readers something think about and something tangible to do, highlight that Autism exists within Black bodies without making it a Black book (experiences of Blackness but not being about Blackness), and more.
I’m real life, I invite others in our orbit to meet my son where he is. I am constantly having these days with the public. I am always handing over my iPad and teaching someone how to use the app to communicate with my son. I am in conversation with these ppl. I tell the ones who question if my son knows words, “does anyone question if you know words because you often send emojis over text?” Or, “do you not know words because you use gestures, point, or wave hello to another?” Followed by, “why do you assume he doesn’t know words. Here, these are words on his app. But it also has pictures. He taps these pictures and it says these words. From this device to your hears, he speaks.”
And then I show them how to work it (Aidan’s app). I am always watching Aidan’s reaction. I am noting the appreciation, which always follows the apprehension he has at first that this stranger is fumbling their way through their Mama’s ipad to converse with him. But I notice those smiles he gives. I see the understanding on that stranger’s face. And I see them smile back. They almost always smile back. It’s not those uncomfortable “I don’t know what to do or say” smiles we get a lot. It’s not those standard stock smiles strangers often give each other in passing.
It’s a smile that knows they did something incredible. They learned something new. They held the patience to sit with ppl they didn’t know and get to know them. They found a connection they didn’t know was possible and they will walk away a better informed human.
I don’t know what they will do with that information once they are gone. Just as I don’t know what a someone on the street with a sign would do with the $30 I gave them. Maybe they will really go buy lunch with it like they said. Or maybe they will buy beer and cigarettes. I don’t know.
But I do know what I did. This person may not ever use what they learned with my son and I. Or, they may carry the experience with them always, allow it to inform future interactions with people, and spread it to another.
As I mentioned in one of my more recent posts, I am not asking people to try on my son’s disability. I am asking them to expand what they already do when they communicate nonverbally, they consider all the ways in which they communicate with no spoken words, note how they are treated versus those like my son, and open their minds to the reality that speech is not something to be leveraged and all forms of communication are valid. Because every way in which they communicate is valid, extend that thinking, caring, and concern to my Aidan.
When I sat with all these feelings and felt as though, “I don’t think this is at all what I was doing,” I questioned whether it was even appropriate to state as such. Like it was bad form to change your mind? To go back on an apology that you didn’t fully think through when you gave it? From the moment I was informed it caused harm to the moment I wrote that post, was like 15 minutes. I gave myself no time to think. I just acted.
But would the audience understand that? My frustration grew at the comments and the shares and the likes. The comments were infuriating because it was the twisting of my intentions and the perceived lack of value the impact of the foundation of our story would have.
Intent versus impact. We see this a lot. And general consensus here is that impact matters over intent but we do it to the extent that intent appears to not matter at all. Or many don’t think about what one’s true intentions are or the actual impact of what they are doing.
I didn’t write a Black book. But I am raising a Black, Autistic, Nonspeaking teenager who will grow to be a Black Autistic Nonspeaking adult male who as not known the benefit of innocence nor the innocence of childhood since he was 5.
My intentions won’t always align with the large majority of my audience but I didn’t write a book for just this audience. This was for those in the communities we reside. The impact means the world to me. Because I want to reduce the harm that will come to my child. I want ppl to look at his iPad as a mechanism for communication not a weapon.
The general public does not value their own nonverbal communication because they do not sit with the realization of how much they do it. They don’t sit with the knowledge of how much they need to do it.
How can this world understand that my son’s communication is valid when they cannot even recognize it in themselves? Humans communicate without speech all the time. How do I get them to recognize this and use it to understand and care for one another more deeply?
And this isn’t just for Nonspeakers. My son is Nonspeaking, but he has not cornered the market on Nonverbal communication. I am going to tap into what it is all humans do and see if I can get them to understand my child more.
However, this isn’t just for NTs to figure out how to talk to Nonspeakers.
How many times have you witnessed a young child struggle with saying something or they are shy and a teacher or parent will go “use your words”? “Speak up”?
Even with adults, “How am I gonna know what you want if you don’t tell me!!!”
Speech is leveraged everywhere with all ppl. Regardless of neurotype. Let’s normalize being able to just shoot someone a text from across the table and someone not side eye you. Or writing a note to the waiter cause you have a headache.
Do you know how many cashiers at McDonald’s or any other fast food place that look at you funny cause you ask for the adaptive menu? The one with the pictures and whatnot?
They offer this but they don’t actually recognize how to use it or communicate with someone who does.
I once had a woman tell me that because she saw what we did for Josiah during the Scripp’s Spelling Bee that she was going to do the same for her daughter. Jojo never spoke at school. He would air write, or just write notes but he did not speak. But he could spell. His teacher entered him into the Spelling Bee and I knew he wasn’t going to say the letters out loud. So I asked for accommodations.
He was able to spell the letters on paper. They gave him a board the higher in the competition he got. He beat out the whole school and district. In third grade. He made it to Regionals. This Mother had an amazing child speller as well. And now that she knew of a way to participate, she could tell her daughter.
But this was not without its challenges. Jojo didn’t talk in school or to students, but he would talk to us. It wasn’t loud but we could hear him. Others would see this at the competition and think he was faking. Or somehow cheating. Thankfully nothing came of this.
Thing is, people should be allowed to communicate in the way they feel most comfortable. This isn’t just a book for this community. It is a book for all.
I am going to close this out by saying that, I stand by the apology I gave with the information I was given and considering at the time. I am going to use what I learned of simulation to inform my future work.
One of the biggest things I thought about when writing this is, should we have something like this in schools? What would that look like and how do we do it in a way that draws their attention to the multiple ways in which all humans communicate, highlights that speech should not be prioritized, challenges the perceptions surrounding those who do not speak and does it in a way that doesn’t cause harm?
Because I truly believe there is a way to do this. I feel I already do this well. I want people to get this, understand this, challenge themselves, think more deeply about their own communication and how that applies to those like Aidan but you don’t want to do it in a way that will alienate them further. That is what this situation has taught me. To be more mindful about the resources I create surrounding this. I don’t believe what this is, is simulation, but I believe that it can go that way if not administered properly.
How my son communicates is valid. And it’s a modality of communication that should be taught just as French is taught in schools. Or ASL (which is not taught at all schools but should be). [this marvelous thought came from my good friend, Dr. Mari aka Autie.Analyst on IG when we were talking about how to implement the foundations of this book into schools and keep harm at a minimum or better yet, nonexistent]
I will not discontinue what it is that I do with my son and the offerings and teachings I provide to my community while on these days. It is important that I be mindful of how I do what I do, think about others, but also think about us. Which I did no such thing when I penned that apology. I literally did not think we mattered anymore.
And we do.
Thank you for reading.