Life On The Inside is an email newsletter about life with my son who has autism and who has been under house arrest since April 2023. You can sign up here:
This partially dry January stuff has its benefits. For the most part, I’m sleeping better and, despite being exhausted in every way one can possibly be exhausted and maybe some others no one’s thought of yet, I wake up feeling clear and relatively ready for the day. Last Wednesday, in fact, I woke up feeling particularly clear headed. I was even smiling when I went to my desk to turn on the light.
And that’s when I saw it.
The yellow, lined sheet of paper covered in black sharpie. A note from my son.
Another note from my son.
I’ve collected several since last April. Each one as heartbreaking and painful as the last. Each one reeking of frustration, sadness, and profound loneliness. Each one proof of how little progress I’m making in helping him.
I know that his progress is not all on me. It’s on him. And it’s on his therapist. And it’s on him to do the work his therapist gives him to do.
But I’m telling you, people, we’re getting no place. I can see him suffering. And I’m suffering. Even Mr. Rugby is suffering. He’s taken to asking me several times a day if I’ve eaten and has twice stopped short of asking if I’ve showered.
I cut him off with a quick - but truthful - “Yes, I showered. I know I still look like shit.”
The note Mr. Happy to Be in His Own House and Not the Big House left me on Wednesday was as crushing as all the others. As I always do, I shared it with this therapist and with Rob, and I talked with my son about it.
Our “conversation” went as it always does, in circles, and then on a long, meandering path through his memories, some good, most not. And it ended, as it always does, in nowhere land. In nowhere land, at the close of his sixty minutes of nonstop, heartbreaking, misery-reliving meandering, he needs a nap. But at least he goes off to take one happy.
“Good talk, mom. Thank you. I love you.”
In nowhere land, I unpin myself from my chair. Cry as I get myself a glass of water. And wish I could take a nap, too.
Then I take a deep breath, grab my phone, and swallow my guilt. I call the Medicaid office in Florida. I have to get him situated somewhere safe, somewhere he’ll be with people like him.
Somewhere I won’t be.
I love him, but I cannot fix him. And if I don't take my life back this will become my life. And God forgive me, I don’t want that.
Thank you so much for subscribing to Life On The Inside. I appreciate you being here with me. If you’d like to read parts 1-29, you can do so here.
If you’d like to check out my newest book, BOUNCE: A Memoir of Resilience, you can read the first two chapters here.
My heart breaks for all of you. Finding a way to get back to your life must be your first priority. There is no fixing. ❤️
I can't help but admire your honesty and vulnerability in sharing such a personal struggle. It's a heartbreaking situation, and it takes immense strength to acknowledge that you can't fix everything for your loved one. Taking that step to seek help and ensure your own well-being is a difficult but necessary one. Sending positive thoughts and support to you and their son during this challenging journey. 💪❤️