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Action, not ideas, brings change

I think the first time I heard a version of “the difficult is that which can be done immediately; the impossible that which takes a little longer (George Santayana) was when I was stationed at the NCTAMS LANT DET GTMO in Guantanamo Bay, Cuba. Back then I didn’t understand it could also be applied to parents of children with disabilities, because I hadn’t experienced first-hand how challenging it can be. For the first twelve years of my son’s life, my wife handled everything on the homefront, I was the provider. This worked for us because of my operational schedule. 


I believe the split in roles is common to all families, I don’t think it’s unique to those with disabilities. To me, it makes sense, knowing who has what responsibilities frees up brain space. You don’t have to worry about whether something is getting done or not, you can focus on what you are responsible for. At least, in theory. 


But as I learned this system is not without its flaws. If something happens to one of you the other could be left holding the bag. In my case, it was the loss of my wife. I got a crash course in how to take care of my son, as well as what needed to be done to manage the household. To put it mildly, it sucked. After ten years I like to think I’ve gotten the hang of things, but I still miss having the backup. 


One of my biggest regrets was not planning what to do if something happened to either of us. We did a will and durable power of attorney for me, but we never talked about life insurance or anything else. It was all we could do to keep up with the demands of our lives. I’m sure if my wife suspected there was something more to be done she would’ve found a way to do it, but we didn’t know what we didn’t know.


To add insult to injury, I didn’t know what she did. Oh, I knew the bills got paid and we ate dinner every night; but I had no idea of all the other things required to keep the trains running on time. In hindsight, I wish we’d had a family meeting every so often to talk about what she was doing; or at least kept a folder with information like the name of doctors, dentists, etc. Again, I think this was further exacerbated by my operational schedule. Being home would’ve allowed me to participate. 


Why am I bringing all this up now? After all, it’s been ten years. I feel there is a change coming. The world of disability planning is expanding beyond selling life insurance and telling parents to get a Special Needs Trust or open an ABLE account. There are more and more organizations popping up to help families like mine not only plan for the future of their children but also live the best lives they can now. 


The last 2 years of podcasting have made me even more certain of this. I’ve barely scratched the surface of all the companies I’ve found, and I’m adding more every day. Now is the time for parents and caregivers to change their paradigm. Build in time to talk with each other about what’s going on, what the future could look like, and what gets them excited. I can guarantee there are already plenty of discussions about what’s not going right. 


Start building your team. You don’t have to rely just on what’s been done in the past. Not ready to talk to anyone yet? That’s okay, start a Google Sheet. Put the company name and a link to their website on it. As you find companies that interest you add them to the list.


I would encourage you to put a deadline to start on the list, otherwise, time will slip by and nothing will get done. I’d also pick an “accountability partner, someone who will challenge you. Knowing about resources is useless if you don’t do something with them. Maybe use the accountability partner to help you screen the resources. I think this model could work great, especially if you’re a member of a parent group – divide and conquer. Share what you find, what you like and don’t like. Best of all, Google Sheets can be shared!


What are you waiting for? Let’s get out there and take over the world!


Originally published as Action, not ideas, brings change at Special Needs Navigator

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