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As I sit here on this singular couch in this way too small living room, I rub my son’s head as he rests against me. I think of how hard his 15 years on this Earth have been. To walk it’s dirt with no speech in a world that covets language that springs naturally from tongues. And not just any language, language they feel to be “proper.”
I stroke his head and he stirs a bit, turning his body away from my embrace and letting out a screech. With his eyes closed he feels where he will land with his hands. A new spot of comfort, still beneath my arm and pressed into my side.
I stare at him a bit and then the tears fall. He WANTS to communicate. I see it in his eyes, the sounds he’s making, and how his mouth is trying to form words. I am just staring at him, and I cry. I haven’t been still enough to feel. And right now I feel it all.
The guilt. The anger. The sadness. The failure. Nothing in what I am currently feeling is positive. It wasn’t meant to be. This is the release of all the things I hid when trying to present as strong in spaces that needed people to be “warriors” for their causes.
I am strong. And there is such strength in allowing yourself to feel all the soft things. However, I get stuck in this loop that vulnerability is something that I don’t often think I have the luxury of being.
I mean, there is still so much work to be done. Is there anything I can do to forgive myself?
Not that I know of. Not right now.
Aidan has no reliable form of communication. He uses an iPad with Proloquo2Go and is learning Spelling to Communicate. But he is not 100 percent proficient in the former and I am struggling with the latter, which means he will struggle with it as well.
I am on my own here. Just as I was at the beginning of his AAC journey. I don’t have the emotional cash to travel the path or recounting the dozens of speech therapists who turned their backs on us. This forced me to help my son when I didn’t have the first clue about what to do.
And here I am, stuck in a similar spot. Lost on how to work S2C but not without the assistance of those I know and trust.
I am taking this leave from social media to reconnect with my son. To research more. To read more. To learn more. I am restarting this journey with him. Not from the beginning. He hasn’t regressed. He just hasn’t progressed.
And that is on me. Equal parts not knowing what I am doing and being overwhelmed by that, spending too much time distracted by my work on social media, and not having the funds to pay for the lessons that he would need.
This will no longer be something I don’t understand, neglect, or cannot afford.
I will document this journey here. As best I can. And when I do, I will share as much as I can. In the spirit of transparency, much of those shares I will place behind a paywall not only because of how much I will share, but the amount of energy that will go into it, and I intend to use the income I make with this newsletter to fund his lessons.
I truly hope you understand this.
I know that when I stop crying, I will be excited for this journey. I know it will be an amazing one. I just needed to take a step back and prioritize things.
I will share the things we are doing, who we will work with, what resources I am tapping into, working definitions, and more. I am hoping to have some nonspeakers stop by and write for the newsletter or do a Q&A for us.
He is starting to be more open with camera work so maybe he will join me on a weekly video. Don’t count on that though. But don’t rule it out.
Thank you for being here.
Your paid subscriptions will go towards Aidan’s S2C lessons, as well as materials and resources to help me learn how to help him on his spelling journey.
Hi, this is Steph. I followed you on social as @risingphoenixcomics. Once my finances are back in my hands, I plan to become a paid subscriber so I can help you and your family out more.
Also, I love your writing and your perspective. You are helping me to broaden my understanding of issues that mess with everyone, but disproportionately so when a person has multiple intersections. (I think that’s the term... I’m sleep-deprived.)
Please don’t give up, your words are worth it. Please take time to rest, so you can live to write another day. Please know that I have hope, for you and your family and autistic people of all backgrounds.