If I Could Go Back In Time

If I could hop in a time machine, there are so many things I’d want to change! Back in the 1960s, people really didn’t have a clue about the brain, and when it came to Disorders of the Corpus Callosum, forget about it! It was like a black hole of knowledge. Then, in the 70s, I got smacked in the head by a foul softball ( not my best moment), and they decided to give me a CT scan. The doctor looked at my parents and casually said, “Well, he

walks, he talks, he must not need that part of his brain.” Can you believe that? If that happened today, I’m pretty sure it would be considered malpractice, but back then, it was just how things were done.

Sometimes I can’t help but think about how different my life might have been if my parents had access to the knowledge and interventions we have now. Honestly, when I first got my diagnosis, I was carrying around a ton of bitterness. It felt like I was running into a brick wall for over forty years before I finally learned about Agenesis of the Corpus Callosum. It’s wild to think about how much has changed and how much more understanding there is today. If only we could rewind the clock, right?

Reflecting on the Past

You know, there’s just so much I wish I could have shared with my parents while they were still around. It really weighs on me sometimes. They carried a lot of burden, and I can’t help but think that if I had been able to show them what the problem was, maybe it would have made things a little easier for them.

Mom the Tiger

My mom was like a tiger when it came to IEPs and all the resources out there. She fought tooth and nail to get me the help I needed. I mean, she was fierce! But as my ACC symptoms became more obvious, it felt like the walls were closing in. There just weren’t enough tools or support systems available, and I could see the frustration building in her. It was heartbreaking to watch her give up, even if I understood why.

The Closed Classroom

Eventually, I ended up in a closed classroom, which was a whole different world. Mainstream schooling? Yeah, that was a disaster for me. It’s like I was trying to fit into a mold that just didn’t work for me at all. I often think about how different things could have been if I could have communicated better with my parents. They were doing their best, but I wish I could have eased their worries and helped them understand what I was going through.

It was a bit of a double-edged sword. On one hand, it helped me concentrate without all the stress. overstimulation, and distractions. But on the flip side, I kind of feel like my real learning stopped when the classroom closed up. Plus, they just tossed a bunch of kids with all sorts of issues into one room together, which could get pretty chaotic. They labeled it a school for the "emotionally disturbed," and honestly, I really hate that label. Sure, I was a mess emotionally, but that was more of a symptom than anything else.

The thing I hated the most was the use of restraints and a padded room. I still have CPTSD from the experience

Wishing for Change

Oh, how I would have loved to make things different for my parents! If only I could have found the words to explain my struggles and let them know that their efforts were appreciated, even when things got tough. It’s a tough pill to swallow, but I hold onto the hope that they knew how much I loved them and how hard they fought for me.