As my son’s 18th birthday approaches I find myself reflecting on the significant independence he’s gained over the last (5) years. I remember when we were first told he had Autism, the doctors and teachers made it a point to ensure we understood he would likely plateau – and not to get too upset. Full disclosure – this happened over 12 years ago and I’m coloring what was said with what I heard/remember, so I own the fact this may not have been what they were trying to convey. But it’s what my wife and I took away, and it set a tone.
In the following years my wife and I allowed this to color our perception and interactions with our son – at first by doing things for him at the first sign of trouble, and eventually just outright doing it for him – not even letting him try. When my wife died my son was 12, and he literally did next to nothing for himself – to include toileting and bathing. This year he’ll turn 18, and he’s quite the independent young man. He makes his own dinner every night, puts laundry away, cleans up after himself and gives me a grocery list weekly – in addition to toileting and bathing himself.
I allowed a similar influence to shade my perceptions when I was in the Navy. I had been assigned to manage a shop of around twenty people in Air Department, and I was told nothing but negative things about them. Rather than ignoring these opinions, or at least taking them with a grain of salt; I went in fully convinced I’d been given the worst bunch of people in the Navy. Needless to say I turned into the worst boss I could imagine, I don’t think tyrant is too strong a word. To make it worse, I didn’t learn until it was too late – after I had transferred to another duty station.
My point in these trips down memory lane is this. I think we’re all guilty of acting on incorrect assumptions based on information provided. As a parent of a child with disabilities I struggle constantly to remind myself the diagnosis isn’t a rule book – it’s an identification for why he may have certain behaviors and challenges. It doesn’t mean every possible manifestation will apply, and even those occurring are definitively not able to be worked around.
Technology and medicine are advancing at an incredible rate. People who may have once been trapped inside their bodies are finding new ways to communicate – through organizations like VocaliD and devices like the Surface and iPad. They have wheelchairs allowing people to stand upright; and are developing exoskeletons to provide even more mobility.
Yet some of us still latch on to the worst possible scenario, telling ourselves nothing will help our child – they’re different. I challenge you to change this narrative, instead of focusing on what your child can’t do – celebrate what they can. And never stop trying, even if they’ve failed in the past. If you had a child without a disability I don’t think you’d give up, I think most of us would continue looking for tools to help them be successful. So why have a double standard?
Yes, there are things my son cannot do right now – and I will concede he may never be able to. The biggest example that comes to mind is driving; but self-driving cars are no longer the stuff of science fiction. Will they be affordable and commonplace in his lifetime – I have no idea, but I certainly hope so. I challenge all of you to revisit everything you don’t think your child/sibling can do; and think outside the box. What can you do to get around these limitations? I bet there is at least one thing you can change! Good luck.