Confronting the future with sweaty palms

Handling transitions

Recently I attended a special needs parenting conference to prepare for my son’s transition to adulthood. Although Jack is only 15, and legally entitled to 6 more years of schooling, I figured I should go.

Why? Because I am scared. Well, that’s an understatement. I’m actually petrified in the “awake at night staring at the ceiling at 3 a.m.” sort of way. And over the last few years it’s hit me harder, because he’s in high school now. We’re approaching the end of Jack’s childhood. And I’m at a loss for what’s to come.

What plays havoc on my peace of mind? Here are a few of my “greatest hits”:

What will happen when he ages out of school?

How he will spend his days meaningfully when there aren’t a lot of day programs for the developmentally disabled?

Where will he live?

Are we doing enough to plan for 3 retirements, Jack’s and our own, that keep him eligible for public programs, but allow his financial stability, no matter the budget-cutting whims of elected officials?

And how do we do all this so my typically developing child won’t be too burdened after we’re gone?

These are the scary thoughts that I could suppress while I deal with the crisis du jour. It’s so tempting to do. I could just hit the snooze button on my fears for another 6 years. There’s plenty happening now to distract me.

But here’s what I’ve learned: as disturbing as it was to have some of my fears validated by the conference (budget cuts are no joke!), there was actually a larger sense of relief. For I faced my fears and stared them right in the eye. Their hold over me has loosened. And I’ve begun to gather information. By preparing for Jack’s next stage, it allows me some control.

During Jack’s transitions to preschool, elementary school, junior high and high school, I tortured myself with “what ifs”. What if there aren’t enough aides in his class? What if his teacher doesn’t get him? What if he doesn’t have what he needs in the classroom in order to be successful?

Each school transition we faced seemed more daunting than the last. But Jack survived and thrived. And honestly? They were much worse in my imagination than anything that actually happened.

And the whole time Jack was growing, developing and transitioning to new stages, we were growing too. We became parents who prepared, yet adapted to life’s twists. We’ve collaborated with many professionals, but have spoken out when something wasn’t right. Each set of skills practiced, only better prepared us for the new transition. So looking back on years of special needs parenting gives me the confidence and optimism to believe we will handle this too.

As I ponder Jack’s future, I breathe deeply and pray for clarity. I’m only starting the process. Visualizing his adult wants and needs and knowing what to do won’t happen in an afternoon. This is a project best taken in steps. Knowing what is out there is one. And knowing what we want for him is another. And then if what we want isn’t supported by what currently exists, we have time to figure that out too. How liberating it is to imagine Jack’s later life as one filled with love, purpose and meaning, even if my hands are damp with fear.

Posted Under: Blog