I am no longer sharing my son's communication journey...

not in the way that I wanted to.

When it’s said that someone has little control over their body, what do you think that means? When a parent says their child has trouble controlling their movements, what do you think that means? When a Nonspeaker says that they struggle getting their body to mind their brain, what do you think that means? 

How do you think that looks? 

Do you feel it’s something like running away when they want to sit? Or how about laughing when they really want to cry? Or the opposite crying when they want to laugh? Is it trying to say something but nothing comes out? Perhaps you think it's a lot of stimming on their fingers when they would rather their hand stay still? 

It could all of that. 

And it could also be gripping the sharp end of the knife and walking around with it because something HAS to be in your hand, doesn’t matter what it is. It could be not knowing how to let go, even when you want to, even when you KNOW YOU HAVE TO. It could be wanting to give your mama a hug and hitting her instead. It could be literally knocking the hair out of your head because there's too much dead space and time when you are sitting still, doing nothing, and your body has to be doing something.

It could be standing in the middle of the busy street, trying to tell your brain that you need to continue walking but the order from your mind isn’t reaching your legs. It could be fingers that tap the wrong thing on your AAC because you don’t have the motor control to choose what it is you really want. It could be sticking your hand in hot liquids or boiling pots because you really wanted to grab the spoon to stir beside it. 

There’s so much that can harm a person who lacks the motor control to do what it is that they know they need and want to do. There’s so much harm that can come to a Nonspeaker who is frustrated with not being able to do what they want and not having the support because it’s believed that they don’t understand and/or simply misbehaving. 

Those frustrated slaps to their head that cause bald spots and bloody bumps when they mess up on something they know that they are trying their best to do. The pulls of their skin until it tears from their body because they can’t communicate something. The shutting down because their body is too tired to continue but their minds aren’t. 

This is such a hard existence for them. 

And you know who else it is hard for? 

Their parents. 

We watch them. Those same hands we fell in love with the moment they were born now take aim at their face, head…body. Nails that slice through skin like hot knives on butter. The constant supervision and danger that they are often in through no fault of their own is exceptionally difficult to navigate. 

And we live in a world that offers little to no support and understanding. A world that either labels our children delinquent, unaware, unintelligent, in need of heavy medications and institutionalization or it will claim that they understand and only go so far as their own experiences will take them. 

They don’t know. Not truly. 

I shared a tiny portion of Aidan’s session the other day in my stories because I know there are many who were curious about it. There are so many that want to know more about this journey. I am willing to share this part of our lives with others if it would help them with their own children or themselves. This video wasn’t something that was going to live on my grid. Nor is it something that is going to stay in my stories forever. Something about it didn’t sit right in my spirit (not the video itself) and I didn’t realize why I wouldn’t want to share it more permanently…until now. 

My body was looking out for me. And you gotta listen to the vibes that lie beneath your skin. They be onto something. 

Aidan spelling is a journey. One he is at the very beginning of. One that I am very aware might take years. At times, it's going to look messy, chaotic, disorganized, etc. He’s not going to appear as my good Nonspeaking friends do when they share, be it online or in person. He is still learning. He is still going to have someone coach the hell out of his body. And it’s going to look off to many of you. 

And for many of you, it’s “harsh.” It’s “triggering.”

And it fucking pissed me off. Even the ones I knew didn’t mean anything by it. Even the ones who didn’t fully understand our lives. But I can’t be held responsible for their ignorance. Not when it comes to my children. I extend a lot of grace to people. I swallow a lot, not only because it’s expected of me to do so, but because I know that I have to make hella sacrifices to accomplish the things I want to accomplish. My children tho, when it comes to them, I don’t have as much patience. So, the messages were angering. Because it’s infuriating to have to respond to each and every single message that centered their feelings on something that involved a body outside of theirs. One they knew so very little about. Whose experiences they haven’t taken much time to get to know. And one who they would not actually know intimately. 

You got three minutes out of almost two hours. Just three. 

My son’s body does what he doesn’t want it to do. My son, if left to sit within vacant space with nothing to do for too long, will do things that will either prevent him from acquiring new knowledge or engage in behaviors that are not safe to himself. Or others. Many times, it is both of these things. 

Soma wasn’t misunderstanding my son and his body. She worked her way up to knowing him and his body. She started slowly. She gauged his movements. She learned when he needed breaks. And she knew that if he held that pen for a moment too long, he would not have advanced further. 

I sat in so many discussion groups with other Nonspeakers thankful for someone who kept them from getting caught in their motor loops. I sit and listen to the people that call this woman harsh and never met her. Never did anything with her. And then I sit with those who feel as though they owe her their lives. 

I get to learn what they truly felt about her and how she worked with them directly from them, because she taught them how to communicate. So, I made the decision to take my son to see her. And she explained everything to my son. From sharing the pens, to why she takes them back, to listening to his body, to giving him the breaks in the moments she could tell he was tired. She talked to him as if she were in deep conversation with him. 

She teased him and he teased her back. The most engaged I have ever seen him be in any of these sessions, including the ones he has with me. I shared that he told us his favorite color. It’s yellow. I am still in shock over that. 

And some of y’all are triggered by the pen. 

Some of y’all didn’t like how her voice sounded. 

Some of y’all didn’t care for what she said or how she said it.

She took the pen because she needed to take the pen. She needed to keep moving because to stop would have resulted in my son finding a loop and getting stuck. Or poking himself with that pen. The faster pace didn’t allow for him to establish that loop. The walks from him to the other boards provided respite, short enough for rest, quick enough for him to not get involved in a loop. He kept up. And when he could not. He stopped. And so did she. 

Far too many of you will claim to understand that not being able to speak is an issue with motor planning but don’t actually understand that this is a whole body experience. So many Nonspeakers, including my son, need help initiating and stopping a motor action. The sharing of the pen, the taking of the pen, the giving it back, etc. is part of not only preventing any motor loops that will discourage learning and/or cause harm but also helping to initiate a motor action, the pointing to a letter and spelling. 

Most of the time he gripped the pen, he would look at her and laugh. She would say something funny, he would laugh even harder. Then give it back to her. When he would grip it and bring it close to him for a certain amount of time, she was like “your hands are tired, we are going to break.” And he stopped spelling, but he kept listening to her talking. 

The biggest things I noted between his time with S2C practitioners and Soma, who does RPM (rapid prompting method) is that she prompted a lot, but she also sounded out the letters. For every word, she sounded out how they sounded…and even just hearing the sound he was able to find the letter. This further let me know that my son listens. He knows. She explained what words meant, she sounded out the letters. Sometimes she didn’t even spell a word, instead opting to sound it out or even letting him do his thing. She didn’t allow him to get stuck in loops and he helped him to keep his momentum up. 

Nothing bothered me. 

Because I was there. 

Because I actually talked with her. 

Because we laid out our expectations. 

Because I watched my son.

No one is going to harm nor disrespect my son right in front of me. That won’t happen. 

But it seems that what many Nonspeakers I have talked with say is true, that people want to control how they get to where they are. Every step of it they want control over without actually seeing what it is that they need. My son will literally grip a sharp knife and walk around like it’s nothing. Everything I have to pull from his hands looks harsh. Everything I take from his hands can look bad. That’s one of his things he can get stuck on. And it will keep him from doing anything else, not just spelling. Or he can hurt himself. 

Soma reminded me of my grandma and in that moment is when I realized that a lot of what my amazing, beautiful, strong grandma did with me, to teach me the write, to teach me to share my thoughts with the world in a way that would command they listen, these same people would find harsh. 

I thought it would be a good idea to share this part of our journey as well. That isn’t happening again. I promise you that. Cause I don’t want to put out something like this every single time I get comments and messages like the ones that had me writing this. I feel they don’t actually want to see the progress. They want to see the end. They ain’t in it for the journey. 

And I don’t much honor the wants of people here, but I am going to honor this one. 

Y’all will know the end of this journey. Not the beginning. Not the in-between. 

Just the end. When he’s fluent. However long that takes. I will share about his communication. But surface level. I will share what I feel to be the differences between S2C and RPM. I will share the programs I have participated in, and will continue to participate in. I will share some resources. I will share groups to join, people to follow, organizations to look up, etc. but that’s all I will have. That’s all I am going to give. 

Cause really, I ain’t trying to trigger none of y’all. Lemme keep this to myself. For real.

I apologize to those who benefit from these shares. I have to honor my feelings here. There’s absolutely no way I am going to respond like this to these comments/messages that will inevitably keep coming…and I know me, I am going to want to respond to them. So, I am just gonna fall back.

My son won’t catch me slipping like this again. Ain’t no apology I can give big enough to let him know how sorry I am. 

Y’all be easy.