• Kelly

Our Autism Story – Day 28 – “The ‘F’ Word”

The “Future.” This is the toughest topic to write about.

When Brahm was diagnosed, one of our first questions was what the future would look like. Would Brahm go to college? Would he be able to get a good job? Any job? Would he have a family or get married? Would he have a really good friend? Would he be able to live on his own? Would Brahm be happy?

We were told that there was a huge range of possible outcomes for Brahm. He might be on the high end of that range – going to college, getting a job, supporting himself and living on his own. Or, he could be on the lower end of that range – requiring much more assistance and care. There was just no way to know at that time what the future would look like. Our goal was clearly to work really hard to try to make that higher end of the range happen.

Over the past several years, that big wide range seems to be narrowing. The higher end of the range is appearing less and less likely. New questions have popped into our minds. Will Brahm be able to handle activities of daily living without assistance (bathing, dressing, etc.)? Will he have hoarding tendencies? Will Brahm have issues with law enforcement? Will he be able to drive a car?

So, where are our heads at? We are still hoping for and working towards the best. But, we are more realistic about what we need to be planning for in the future. Our two biggest concerns are…

  • Financial planning – Most couples need to plan for two people retiring. We need to plan for three people, one of which will likely outlive us by a whole bunch. I often joke I will work forever – this is the source of that joke.

  • Caretaker – This is the toughest part. Who is going to take care of Brahm when we no longer can? Who is going to protect him, help him, and advocate for him? Helena will likely be the one to take care of her brother (assuming she’s willing). How can we not feel guilty about putting that on her? And then, what happens when she can no longer take care of Brahm?

The good news about the future is that it’s not here yet! Until then, we’re going to stuff all these crazy thoughts away and live each and every little moment to its fullest!

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