3. Roles

A cursory scroll of social media today will show you all you need to know of the culture wars raging around gendering or de-gendering of the roles of men and women in society today. And while sometimes it doesn’t seem like there are up sides to the special needs parenting journey, this is one of the times that there are. I get to sidestep this discussion all together. It’s not that I don’t have an opinion. I just live in a world where no one cares. In the special needs parenting world, there’s only one role. And that’s the role of a special needs parent.

Parenting a special needs child is a full time job on its own. Sometimes, depending on the severity of the condition, it’s more than one person’s full time job. And it doesn’t stop when they get to all-day kindergarten. Which means that if your family has anything else it needs to spend time on; work, other children, running a household…eating, we’re already below the resource water line and it’s time for a different sort of roles discussion; one that only cares who is on the team and who isn’t.

In your head, when you started this whole fathering thing, having your role may have meant that men do some things and women do others. And maybe that’s still true in your house. But there’s more in a special needs household. In our world, knowing your role is being clear about what your family can count on from you. And then being flexible enough to respond to the reality that often, you’re going to have to do more. Sometimes much more. There’s no easy way to say it. Buckle up. You’re in for a whole lot of work. And none of it is optional. That’s the deal. I don’t make the rules.

In the tech world that I work in, we often speak of what’s called a “lean start-up mentality”. New companies don’t have an abundance of resources. Which makes sense because they don’t make any money yet. Like special needs families, they start the day below the waterline too. The smart new companies understand that their biggest risk to success is not having the resources to make a fully baked product that the market doesn’t really want and survive long enough to just go make another. So the pattern of resourcing they use is to move quickly to get some version of what they’re doing, a minimum viable product (MVP), out to the market. Then they use agile resourcing processes to adapt it to what the market wants. And when that adaptation comes, the members of the team need to flexible enough in their roles to respond.

Refusing to make slightly more blue widgets because you’re the type of person that makes slightly less blue widgets gets you voted off the island. And so does not leaving a little early to pick your other kid up from school because the other one has a medical appointment. Yes your job is important. And yes it may funds everything and provides the health insurance. But nobody cares. That appointment has to happen. And that other kid has to get home from school. So figure it out. Yes, it’s hard. Important things usually are.

Every day of life as a special needs parent is a minimum viable product. We get out the door and on our way with barely any margin. And that means that I often have to pivot and adjust my role. May as well go ahead and get comfortable with it now.

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