Search This Blog

Tuesday, June 16, 2015

Number Thirty Four: A Special Needs Parent's Biggest Fear

While we were on vacation, and I was lounging in languid splendor on a wicker chair by the pool, I watched an elderly woman come in with her son. They must have been regulars, because the life guards all seemed to know them.

She walked with a cane and a very pronounced limp, and by the time she crossed from the gate to the pool area, she'd had to rest a couple of times, and she was very short of breath.

She was also leading her son, who was blind. And as she talked and interacted with him, it was clear he was disabled in other ways as well. His communication skills were child-like, and he had a few bouts of disruptive behavior that she quickly settled each time. But when she helped him into the water....oh, the joy on his face! He loved it. And it was clear to see she loved him loving it.

I wanted to go up to her and ask "What's it like? Getting older? And having someone you still have to look after? What should I be planning for, just in case? Do you have other children? Do they help? Do you want them to?

But I didn't, of course. I didn't want to offend her or make her or him feel like they were being stared at and talked about. But I watched them.

With a great big lump in my throat, I watched them.

And I was reminded of this article that I saw just a few weeks ago, titled "38 Signs You Might Be An Autism Parent," courtesy of They polled their readers and put these together, and some of them are humorous and had me nodding my head and smiling. A few made my stomach tighten up, and one of them just plain punched my guts out. That would be number thirty four, courtesy of reader Raelene Beruschi:

34. “You stay awake every night worrying about the future and who will watch over your child when you’re gone.”

Yeah, that's us. The ones who wonder what happens as we grow older, and then after we're gone. What happens to the boy who gets worried every time I close the bathroom door for some privacy, after he's had a lifetime of depending on me  - when he realizes the finality of death?

What happens to his sister, whose kind heart will no doubt compel her to take up where his father and I leave off? How will that curtail - or worse - derail her life? Or his? What will they both lose when we are no longer here to be his keeper?

And on the heels of that panic comes the quiet assurance that this child has always, always surprised me. I could very well be worrying over nothing. He could have a full and rich life that he's handling all on his own, and my passing, while personally devastating, won't keep him from living the rest of it.

I hope.

I hope and I work for it, and I encourage him to reach for every bit of independence and resilience and self-sufficiency he can manage. I'll never stop doing that.

But I also know I'll never stop being afraid.


Ellie's journey with her son David has been one of joy, patience and discovery - one that changed the very framework in which she used to view autism. Through David's eyes, she's learned that an autism diagnosis isn't the end of the world - it's just the beginning of an interesting new one.
Available at Amazon for Kindle - and Smashwords for all e-reading device.

No comments:

Post a Comment