Feb 11, 2014 2 Share

Predicting the Future

Tarot cards on table.

I recently celebrated my birthday, with a long weekend in a warm, sunny place, accompanied by a long-time friend who shares my birthday. We were born on Groundhog Day, and we both endured the childhood jokes about whether we had seen our shadow, because, of course, the groundhog is the official prognosticator of spring's arrival. 

So it was maybe fitting that, after we watched the sun go down over the spot where the Atlantic Ocean meets the Gulf of Mexico, we decided to visit the psychic who had set up shop at a card table in the square near the pier. We opted for both the Tarot card and palm readings and took turns having our fortunes told. It was generic and largely unmemorable, but fun. 

I returned home to a colder and darker place and immediately faced my own prognosticating task, one not so fun. We are (finally) applying for Social Security Disability Benefits for Reilly, and I have to write a letter describing his disability and its impact on his future. It's a daunting and depressing job to put into words your fear that your son might not be a self-sufficient adult. At the same time you are doing everything you can to make him independent, and to make him see himself that way, you are forced to write your most dire predictions for his future. And you have to get his therapist and current and former schools to do the same. Suddenly, people who have been nothing but encouraging in the past are doing their best to convince someone that your child will not be able to make his own way in the world. 

It has to be done, I know that, particularly because eligibility will mean access to Medicaid, when he is too old to be covered on our insurance plan. But this isn't a thing I want to have to do. It feels like declaring defeat in a battle I have waged his entire life. I know it isn't, really, and that it won't change how I see him and how he sees himself, or his prospects for an independent, productive, meaningful life. But he will find out (after all, he often reads this column). I don't want him to think I don't believe in him, or that there is anything he can't do. So I probably shouldn't write about it, yet I am, because that is what I do. I try not to hide things, or gloss over the challenges. It's a fine line I walk, wanting to talk to him about autism and his future, while not making him feel different, or less than, anyone else. 

Reilly's eligibility isn't assured. He's likely a close call. But we feel that we have to make the case, just in case. And that's part of the problem. There are no easy answers, no black and white; there’s lots of uncertainty. As a relative of mine said recently, “The unknown zone is a very uncomfortable place to be.”

I think Reilly is in a pretty great place right now. He seems to be happier and easier than he was in his middle school and high school years. Living away from home, at school, earning college credit, navigating a social life—these are all things I don't think he knew he could do, and was afraid to find out he couldn't. When we dropped his older sister off at college during Reilly's sophomore year in high school, he asked, “Will I get to go to college some day?” We assured him he would, but he was skeptical. “I mean a real college,” he countered. That was harder to answer. He's not in a regular four-year college program, but he is taking some college courses, and he's learning a lot of what he needs to be independent and self-sufficient. College life is no longer an “unknown zone” for him. That has given him a huge shot of confidence. 

But while he basks in his successes, I can't help but slip back into that “unknown zone.” What comes next? I know we'll take it as it comes, and continue to look for ways to get him the supports that he needs. I know we aren't throwing in the towel with this SSI application. Maybe it's the midwinter blues that make it feel that way. 

I just really need to get that letter written. I can't seem to get past the first sentence: “Reilly Donovan's disabilities will have a lifelong impact on his ability to function independently in the world when he leaves a supported school environment.” 

And I think I need to write a second letter that starts: “Dear Reilly: You will be just fine. Don't worry. Ignore the shadows.”

Comment Options

Gina B (not verified)

Thanks for sharing

As the mom of two kids with disabilities (autism and Down syndrome), I can relate to this. In fact, I just wrote about how I have to admit the truth of their future prospects, which don't look good. They are 8 and 11 and I feel time is evaporating under my fingers as we still work on basic life skills that they need as adults. Living on their own was once a hope of mime - well, it still is, I'm just aware now of how little chance they have. Thanks for sharing your journey.

Beth (not verified)

Heartbreaking and true.

Following your journey with a blend of anxiety and hope. Keep writing.