Welcome to Special Need Navigator’s ABC’s of Disability Planning podcast. I’m your host Eric Jorgensen. I’m also the Founder of Special Needs Navigator. Like many of you, I’m a parent. In this episode, I am going to share what led me to start Special Needs Navigator and what you can expect from this podcast.
I was supposed to retire on 30 June 2012. My wife and I were finally reconnected, moving back in together in 2010. Prior to this, I had spent five years as a geographical bachelor, coming home every 3 – 4 months for 2 – 3 weeks. My family stayed in Connecticut while I was stationed in Virginia and Cuba. We felt it best given my son is on the Spectrum and my wife’s family only lived about an hour away.
In 2010 we moved to Maryland, planning to go back to Connecticut after I retired. The evening before I was starting my terminal leave (final vacation in the Navy) I woke up to find my wife having an altered mental state in the living room. When I got her to the hospital, I found out she had had six strokes, and there didn’t seem to be much the doctors could do. They didn’t know why her heart was pumping out clots. She lapsed into a coma.
The week that followed was like an episode of House. I was meeting with at least 7 – 10 different specialists every day as they tried to diagnose what was killing my wife. They determined it was an extremely rare auto-immune disease that normally occurs in children – HLH. I don’t remember the proper name, but I will never forget how helpless I felt.
I took her off life support after it became clear there was no brain activity or hope for recovery. This remains the hardest thing I’ve ever done. I was still learning how to be a dad again; I wasn’t ready to be a single father. My son was twelve and completely dependent on my wife. I didn’t have a clue how to provide for my son – my wife literally took of everything in the house. I looked for help online, I was hoping to find someone or some organization who could tell me what I needed to do.
I didn’t find anything like this. Don’t get me wrong, I did get help – just not what I was looking for. My son’s teachers connected me with the local chapter of the Arc. I relied heavily on the Arc of Montgomery County in the first year, it gave my son a safe and constructive place to go after school and over the summer. They also helped him gain confidence and start self-advocating; a trend that has continued to today.
I wanted to be this resource for families. Someone who would not just help them connect the dots and give advice, but also someone who could give ideas they may not have thought of. So many of us are reactive, which just adds to our stress. What if we didn’t have to be. What if there was a way to light the path ahead without piling even more “to do’s” on your plate?
So I went into financial services, I naively thought a financial advisor just gave advice. I learned a LOT – both about myself and about planning for the future. Then, in March of 2020, I was diagnosed with cancer. It occurred about the same time as the Covid-19 epidemic was ramping up in the US. It was an aggressive and rare form of cancer – a nodular melanoma. Talk about a wake-up call.
I had surgery at Johns Hopkins in Maryland at the end of March. The surgeon literally removed most of the left side of my face. As I recovered, I thought about what I wanted from life and where I was. I decided it was time for one more change. So I launched Special Needs Navigator. I became the resource I dreamed of. Over the years I’ve built, and continue to add to, a Google document full of resources and connections around the country. I spend at least an hour of every day looking to add to the list, so families like mine don’t have to.
Every week I will introduce you to someone from my list of resources. Some of the topics, like special needs trusts and guardianship, you may be familiar with. Some, like Nestidd and SimplyHome, you may never have heard of. And some, like a professional organizer or a family law attorney talking about collaborative divorce, may wonder what has to do with disability planning.
Our lives are not, nor should they be, just about a diagnosis. Many of us have the same hopes and dreams as our peers without disabilities. Life doesn’t stop happening because we ourselves have, or we care for someone with, a disability. The last thing you should be doing when a crisis hits is trying to figure out what’s available. I’d much rather expose you to a wide variety of professions and solutions, so should the need ever arise you will know help exists.