The problem starts when they explain it to you.
It’s a laundry list of “nevers”. For my son, at an early age, “special needs” were all about learning what he might never do and things he might never be. Of course, they tempered all of these daggers with sugar by prefacing it with how sweet he is and how “anything is possible.” To this day, when they give us a report on his delays, they begin with “Lucas is a sweet and caring boy who…”
Honestly, I have no issues with that. Lucas is a sweet and caring boy. He’s also non-verbal with autism, that some might term “severe”. His disabilities are immediately noticeable and the areas he needs improvement in, according to many, are vast. I can say that out loud and I’m glad I can. Acknowledging it, without making it the only thing that defines him, is what allows me to help identify what he needs to overcome and helping him do just that.
My son’s areas of improvement are areas that we all consider important and – don’t get me wrong – they are. The need to maneuver eating utensils or properly hold a pencil are major skills that any person needs to master at some point. While he hasn’t yet mastered them, I know he will. And if he doesn’t, he’ll be okay. That said, with enough effort, I’m sure we can at least make some headway in any direction we go in.
How do I know this? Because when we first sat down for that list of nevers, I never thought he’d do anything. Given his young age and the words of experts, my expectations were on the floor.
Seriously. Sounds terrible to write, right? How could any parent say that? I should pretend so that those around me feel more comfortable, right? Make them a chai tea and flick a scarf from around my neck. Then, my hand on his shoulder, I stare off into the sunset, adopt an affected accent, and assure you that, “I never had a doubt in my mind that one day my boy would soar. Soar with the eagles, young boy.”
That, however, would be nonsense. I had nothing but doubt. After all, I watched as milestones turned into gravestones and the birthday candles began to multiply before my eyes. I waited for him to do so many things and more often than not, they didn’t come to fruition. I saw so many other children grow out of things that we kept on hand. I worried for him every day and, when your kid is under two and you’re hearing them talk in terms of “for the rest of his life”, you start to wonder if they’re telling you to not get your hopes up.
I had therapists and teachers assure me that he would do things that he never did. Sit-down meetings at the start of the school year saw eager therapists explain that, “By the end of the year, I am going to have him tracing the letters in that ABC Elmo app. We are going to work every day!”
That was five years ago. I’m still using hand-over-hand to help him navigate those letters on Elmo and his freakin’ app.
So to say that I never had a doubt would be a lie and it would be unfair. Who would it be unfair to? Lucas, because it would downplay the progress he made and how monumental it truly has been. It would say that his successes since those early years were all assumed and, of course, he did them. It makes it seem more than easy, but expected ahead of time. I expected nothing.
There’s no “of course, he did” in this story. My kid busted his butt from day one and, today, he still does. Nothing has been easy for my little man and any help I’ve given him is nothing compared to the work he’s done himself. I watch him in awe as he has pushes forward each and every day.
Does he talk? No. Pencils, forks, and Elmo apps still give him trouble too. In fact, there are a number of skills that most would point to and say, “What about that?”
Well, what about that? Sure, he’s a work in progress, but the things my boy has mastered have all blown me away. From his ability to communicate his needs via iPad device to the way he can run up and down the stairs with ease to the way he’s able to get my attention through a gentle tap on the shoulder as opposed to turning my face at the chin, like he did early on, Lucas has made strides that I never thought possible.
In fact, he made strides I never though about period. Who thinks that? You think about the big things – talking, reading, pee-wee football. You never consider the steps that don’t make it to the parenting books.
Had I done that, I’d still be waiting and still be wringing my hands in agony. I’d be disappointed and complaining. I’d be sad for no reason.
And I’d be missing out on one of the most amazing boys I’ve ever had the honor of knowing. I’d miss out on my son and how he’s learning every day. I’d miss out on all the good that so many in the world don’t even notice.
Life isn’t about expectations. If you go into it with preconceived notions about who your kids will be, what you’ll accomplish, and where you’ll end up, you’ll never be happy. You’ll doom yourself to a lifetime of “almost perfect, but not quite.”
My kids are perfect. My life is perfect. Every day I wake up is perfect. I expect nothing and just witness what happens around me. What happens around me is stunning and Lucas, the boy who started his life out surrounded by “nevers”, has been a huge part of that. In fact, he’s one of the main reasons I try to think like that. He showed me that perfect is what you make it.
I watch in astonishment as he does all he does today and eagerly anticipate all he will do tomorrow. It doesn’t have to check anything off a list. It just has to be culmination of his own effort. Because of that, I know whatever it is will be amazing.