Feeling Empowered in My Health Journey Now that I've been diagnosed with ACC and ASD, going to the doctor for my physical needs is way better. Before I knew what was going on, I never really got around to asking questions about my health or working well with the medical system. It was like I was just floating through appointments, not really sure what to ask or how to express my concerns. But now that I know what's going on, I feel so much more empowered! I've taken the time

Finding Clarity in Diagnosis I've touched on this a bit before, but now I really want to dive in. Getting diagnosed with ACC at 46 was honestly a huge relief for me; it felt like someone finally handed me the missing piece of a puzzle that I had been struggling with for years. It was like, "Aha! This is why I’ve felt so out of sync with everyone else!" All those years of confusion and uncertainty just melted away as I started to connect the dots. I had spent so much time fee

Working While Disabled While everyone's experience having a DCC and working, or trying to work, is unique, this is my story. You know, it’s kind of wild how each person’s journey can be so different, yet we all share some common threads. I've touched on some of my past jobs in other posts, but let me tell you, every single job I ever landed came with its own set of challenges. I was always pretty good at selling myself during the interview process—like, I could charm the sock

My Journey into Emergency Medical Services As a teenager, I had high hopes for myself, even amidst all the issues I was having. I was totally obsessed with Emergency Medical Services and wanted to become a paramedic. I remember the excitement I felt every time I saw an ambulance rush by with its lights flashing and sirens blaring—it was like a calling for me. At 18, I entered the County's EMT training school, which was a big step toward making my dreams come true. The progra

Reasons for Writing This Blog My reason for writing this blog is several fold. First and foremost, I want to share my unique perspective as an adult living with Agenesis of the Corpus Callosum (ACC). This condition shapes my daily experiences and understanding of the world in ways that I believe are worth sharing. By opening up about my journey, I hope to shed light on the nuances of living with ACC, which may not be widely understood. Secondly, I aim to reach out to other ad

There's this thing going around in neurodiverse communities where people say, "I wouldn't change anything about myself because then I wouldn't be me." I have a bit of a problem with that. Considering all the heartache and struggles I've been through, and what my parents had to deal with because of it, I'd definitely want to change some things. Reflecting on Life with ACC You know, I often find myself daydreaming about how different my life might have been if I hadn’t been bo

Discovering My Neurodivergence Later in Life Hey there, fellow DCCers and neurodivergent friends! Let’s chat about something that’s been a real game-changer for me. So, I found out I have Agenesis of the Corpus Callosum when I was 46. Now, you might be thinking, “Why does that matter now since you’re older and have lived your life?” Well, let me tell you, that diagnosis was like a light bulb going off in my head. It was honestly the start of my life in many ways. Making Sens

One of the most frustrating things I've come across as someone on the autism spectrum, , is when people casually say, "but you look normal," or brush it off with, "everyone is a little autistic." These comments, even if meant to be nice or supportive, can really hurt because they show a big misunderstanding about what it's like to live with invisible disabilities. Invisible disabilities like autism and DCCs aren't obvious at first glance. They're beneath the surface, which of

We live in a world where, sadly, if you’re not being productive, people think you’re a burden or selfish and not really contributing. I want to push back against that thinking. We’re all just being ourselves and living our lives, and that’s what being 'productive' is all about. Why Self-Care Matters Self-care is super important, especially for those of us who are neurodiverse. A lot of us have our limits—like how much stimulation we can handle and how we interact with the wo

The Positives Social media definitely has its upsides, right? I mean, it's like this magical portal where I can connect with people who totally understand me and see a wild mix of opinions that I might never encounter in my everyday life. Seriously, I can soak up so much knowledge just by typing away at my keyboard, and it’s pretty awesome! Plus, there’s something so satisfying about expressing myself and getting creative with what I share. And let’s not overlook the practica

Journey to Self-Discovery: Navigating Adulthood and Personal Responsibility Maturity didn’t come easy for me. When I turned 18, I got kicked out of the house, but honestly, I wasn’t ready to take care of myself at all. There’s this saying about DCCs that you should “expect their teens in their twenties.” For me, it was more like my thirties, but whatever… My parents even gave me a big chunk of cash to help me 'settle down, get a job, and face the 'real' world.' At the time, I

My First Connection One of the key things I did when I got my diagnosis was to look for others who were going through the same thing. The first people I connected with in the NODCC community were parents of a little kid with ACC. They were awesome and really helped me get to know this amazing group of folks dealing with DCCs. Meeting Renee So, I met my late friend Renee Rose Oliver one day. She had not only a DCC, but hydrocephalus and epilepsy. We initially connected onlin

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 th

Finding Balance in Connection You know, people often ask me how I manage to live life to the fullest. Honestly, it’s a bit of a journey for me, and I’ve learned a few things along the way. One of my biggest 'tools' is connecting with a friend who lives nearby. We chat almost every day, and let me tell you, it makes a world of difference! When I spend too much time alone, I start feeling a bit 'buggy'—you know, that cabin fever vibe kicks in. It’s like my brain starts to spir

Where do I start, hmm... Some people comment, “You can’t have ACC—you look like you’re doing so well.” My answer is: DCCs are often invisible disabilities. You usually can’t look at someone and immediately know how their brain works or what challenges they deal with every day. It affects me personally, even when it isn’t obvious to other people. Sometimes I may seem completely fine, but I could still be struggling to understand what someone means, keep up with a conversation

Understanding Meltdowns: A Closer Look So, let's talk about meltdowns for a minute. They're something that a lot of us with a DCC and/or ASD (Autism Spectrum Disorder) deal with, but honestly, they can be pretty misunderstood by folks who haven't experienced them firsthand. Low Stress Tolerance First off, many of us have a low stress tolerance. It’s like we’re walking around with a tiny little stress bucket that fills up way quicker than it does for most people. When life t

For about half of my 64 years, I experienced couch surfing or homelessness. Receiving my diagnosis felt like a lightbulb illuminating above me. I finally understood why I was different. Throughout my life, I believed my parents' claims that I was 'broken,' a 'misfit,' 'lazy,' or 'manipulative.' Truthfully, I did learn to manipulate my surroundings to survive, believing I lacked the personal power to change my circumstances. an MRI of my brain and a 3D image of a normal Corpus