There has been overwhelming support and love for my family, myself, and my book. I should focus on that. I should put my energy into that. I know what I should be doing. But I just see red when someone comes for my work, my life, my children, my family.
I don’t see anything else.
And I don’t know if this is an area I am looking to improve myself in. I really don’t. But sometimes, I do want my “ignore game” to be a bit stronger.
3 or 4 people shouldn’t stop no show. Definitely not mine. Why give them the power to take up residence in my head?
Because I have far more to lose than I used to. I feel like one person can topple my shit.
Over some bullshit.
I don’t know how true that is, but that is where my head is at.
The criticisms that have come my way these last few weeks have been ridiculous as fuck. And I am good with someone disagreeing with me on the positions I hold. I will listen but the decision to modify and/or change my positions I reserve to be fully my own.
But lately, the hate I am getting lies within those who haven’t read my book at all but decided it was in their best interest to check me for things I have not said, intimated, or support. There is a racial undertone to all of this. This feeling as though I have grown too large for their liking. I have many reasons (and receipts) as to why I feel my being Black is a threat to them, but we will discuss those in another post.
Last week someone stated that I wrote a book that was rooted in Rapid Prompting Method. And they referenced this image from the book as proof:
This was fucking ridiculous. One of the biggest arguments surrounding RPM is that the Communication Partner is guiding the individuals to hit specific letters of their choosing. That they are the ones that are really typing. This page, at the top states, “Then Mama turns to me with a smile and taps on her screen…” this would mean that these are literally her (mine, really) thoughts. They are not supposed to be her child’s (my son’s) thoughts. They are hers.
And besides, every single robust AAC app contains a keyboard for typing, as they all should. So, even within those apps endorsed by ASHA, there’s a damn keyboard.
This person was arguing for the sake of fucking arguing. Rants filled with all the things my son shouldn’t be capable of doing because they didn’t believe in the validity of a communication method my son doesn’t fully use (though he is learning through Spelling 2 Communicate). Rants that devolved into the claims on my parenting. Again, ridiculous.
Yesterday, I sat with the assertion that because my son does not speak that any and all stories about him should be written by him. They assumed that my son wasn’t cognizant of a book that was not only about him, but about me. It was about the both of us. Simultaneously. Together. They stated they were Nonspeaking as well as if that granted them automatic access to my son’s person. It does not. I listen to all people and their experiences, but listening doesn’t mean give authority to. I still have dominion over my actions and my thoughts. I take deep consideration of what another has to say and I see how that fits with my life and what I can do to help them even if it doesn’t.
Are there parents that speak for their children in a way that I don’t like? Yes. Absolutely. Are there some that don’t understand the dynamics of a healthy parent child relationship and how our lives are entangled within one another? Fuck yes. And this was one of those times.
I am tasked with preparing him for this world, caring for him, protecting him, guiding him, advocating for him and teaching him to do the same for himself. This was a story that explored the bond we hold with each other and how this world will imprint on the both of us. I won’t get into repeating the same things I wrote in a Facebook post about this, instead, read that here:
Aidan is nonspeaking. Aidan uses a tablet to communicate. On that tablet there are pictures that he can press that verbalize what he pushed. All facts. That is what it is. That’s his story. That’s what I know. That’s what I see. I help him where he needs the help. I took all of that, made this: “I was born like this, no voice from my lips. I am Autistic. I use a tablet to be heard, pushing buttons with pictures that speak my words.” Aidan does not speak but he responds to all these voices around him. He can hear everyone. But the overlap can be overwhelming. And no one really listens to him, even when he uses his tablet. That’s Aidan. That’s a fact. That is what it is. That’s what I see. I feel his anxiety radiating off him. I watch his face. I study his movements. I am mindful of both the buttons he presses and those next to the ones he hits on his tablet because of his apraxia. I took all of that, made this: “All these voices around me, diverse and unique. I hear them all, but they do not hear me. I do not speak.” He loves the park and he loves the swing. But he can become overwhelmed in the crowd. I know the best times to go. Because I am his mama, and I will do what I need to make sure he is comfortable. That’s a fact. That’s what it is. This is what I see. This is what I know. This is what he tells me so. I took all of that and turned it into: “Mama taps 'park now no crowd?' I love the park and quickly tap ‘yes’ with no crowd, I’ll feel less stress. Mama knew this, she always knows, when I feel comfortable and when my anxiety grows.” I wrote a whole story, 600 words, 48 pages, like this. Sitting in the spirit of my son. Taking in his lessons. Hearing his voice on his tablet. Documenting our life together as Mama and Son. Seeing how this world imprints on his person. Seeing how it will impact me as his Mama. And I wrote a story based on the culmination of these days in a song like way because my son cannot get enough of music. Our lives. The recitation of what we did together. Of how this world treated him. Of how I had to respond. Of how he responds. What I know of him. What I know to be true. What I see in him. What he shows me. What he tells me. An introduction to a device that society didn’t want to introduce him to. A device that ppl saw as weapons. A device that ppl don’t understand when he uses it. An iPad my unprofessional self had to teach him to use because he was written off long ago by so many teachers and therapists. I know my son. He knows me. This is a story I wanted y’all to relate to, but it is our own. Together. To have someone posit that our story cannot be real because it did not come from my son is infuriating and hurtful. It assumes my son isn’t cognizant of the book he is in. It assumes that I am not an important person in my son’s life. It assumes that this a only a story about him and not the bond he shares with me. Too many over the years be they parent or Autistic have thought my son incapable of discerning his life and the nuances of it. They think because he does not speak they should save him. Their ableism is not something I am going to take on. And he ain’t wearing that mess either. I won’t let him. Hence, this damn post. I wrote a story based on the love I have for my son and the love he has for me. I wanted to introduce this world to Black joy and passion and thirst for life in this incredible human who just happens to not speak. It is his story. But it is mine. And it is ours.
How do so many carry the very ableist thoughts they accuse so many others of having? How would I in my right mind ever take a backseat to the relationship I have with my son to give weight to someone my son wouldn’t even glance at twice?
This person was having difficulty understanding that while this is a story produced for mass consumption that it is a story that is ours. Not theirs. It is about us. Not just my son. This is about an experience that we felt would be relatable, this story ain’t about this specific person or any others (though I hope you find it relatable and inspire you to want to act to make this world better for those like Aidan).
They did not read this story. And was okay with speaking on it as if they had. Someone says that our story isn’t real because Aidan didn’t write it. Aidan has been writing his story from the moment he drew his first breath. If they had read this book, they would have known that it’s:
-Not just about Aidan.
-Didn’t speak for Aidan once.
-and they didn’t have the authority to tell me that our story isn’t real.
I get it. Every story ain’t for everyone. But what’s with being so damn loud and wrong about stuff you ain’t read????
Damn, if you gonna hate it, can you do that after you have read it? Not before.
There are other comments but it’s like you read one, you read them all. It’s all starting to be the same at this point.
Wash. Rinse. Repeat. Times infinity. Which is why I need to channel my energy into the things I can control. They gonna feel how they feel but I need to tune that out. I am not responsible for their healing or their anger. I know who I am and what I do. My family knows who I am and what I do. To include Aidan.
Like we just saw Jordan Neely lynched to death on a subway. I have read that he was Autistic but I am gonna wait for confirmation on that. But he was Black, unhoused, in crisis and this white man saw fit to murder him because he “annoyed” him.
Like you know how many times the cops have been called on my son because his noises annoyed ppl? Or how his iPad looked like a weapon?
You think that doesn’t impact me as his Mama? You think I ain’t dealing with the trauma of that alongside my son?
We were kicked out of last home because of how management didn’t care for our son and his needs. You think that didn’t impact us? On the verge of being houseless several times over the years.
But I can’t write about my son??!!! And our relationship??!! And how he is treated and how that impacts me as his Mama??
I can’t write a story that celebrates who he is in this skin while also educating others and hoping this inspires others to act to create tangible, meaningful change?
I am wicked good with this pen. Period. It is a something I have been working on since I was a child. It is the strongest tool in my arsenal. I have done so much with just words. Far more than I have done when I was sleeping on the steps of the Capitol so I could have mere minutes with some legislator’s staff member. More than when I was running online classes on how to advocate. More than when I was staying up until 3 in the morning helping parents prepare for their child’s IEP meetings.
I have changed people’s hearts and minds with this damn pen. I see my influence everywhere I turn. Because I want my child to step outside and not be harmed for existing. I want him to be happy, healthy, and safe within his skin…as he is.
And we ain’t there.
And if it weren’t for me sharing our story the way I do, so many would still be out there harming us with their actions and their words and not even recognize they were doing so.
I am so careful about how I share my kids. But I do share my kids. Because regardless of whether we leave the house or not, this world is gonna treat us as they know us. It is gonna look at our existence as a message to them. I want to control as much of that message as I possibly can. I have done so much press these last few weeks. And it would have been even more if I didn’t actually care to honor my children and their stories. They didn’t want to do the press that required they be on camera for extended periods of time or answer questions. So, we didn’t do those.
Part of how I change this world for them and for myself is that I have to make ourselves more visible to y’all. That is how you see us. That is how you learn to care for us. And for what it is that we require. We hid in our home for over a decade.
I ain’t doing that no more. My children deserve better. And they don’t need to be saved by strangers who think they are in trouble because they are in a story I shared. Stories they know about. Stories they are good with.
Break some systems. Don’t attempt to break me.
Try these systems. Don’t try me.
Truest your instincts. I do. Nothing more needs to be said.
The most incorrect and ignorant are nearly always the loudest. But something that's brought me just a wee bit of hope this last little while, and I hope just might bring you some hope, too, is this - the more power you take (back), the more you do to challenge the systems that folks cling so damn tight to, the louder and stronger your voice, and the more impact you make in this world, the more hate you will have. Because you stand so fully in your beautiful, powerful, knowing, and honest self - you anger those that wish they could be you. You anger those who would like your silence on everything that you speak on; all of the extremely important and world-changing things you speak on. Your shine is so bright that those who won't do the work to unburry their own little flame, need to dampen yours, too. But dampening *your* shine? These folks got more chance of turning off the sun on a sunny day. Your light will shine, like the sun in the summer, and no amount of whining and accusations that they only hurl at you because they know the impact their words will have, will hide your shine. They can wear sunscreen, or get burned.