When my son was very young and newly diagnosed with Autism, everyone was sure he would be “just fine”. In an effort to put my mind at ease, I suppose, they would offer similar statements.
Don’t worry. One day, you’ll just wake up and he’ll go, “Hi, Dad!”
Before you know it, he’ll be a chattering adult and you’ll look back on all this worrying and think it’s silly.
He’ll talk. He’ll be just fine.
So you wait. You wait for that “fine” moment. Every morning, I would walk into his room and hope, in the back of my mind, that he would greet me with a nod, a wave, and a “Good morning, fair father.” I pictured him with a little top hat and monocle.
Well, it’s many years later and that still hasn’t happened. After writing that initial intro, it would seem that an outcome short of full language would be a letdown. It certainly reads that way. After all, he’s six now and, by the standards that I along with so many others put on the future, everything is still not “fine.”
Yet, somehow it is.
When I say that things turned out fine, I’m not kidding myself either. It’s not a situation where I’m standing in a burning building and pouring shot glasses of water on the ensuing flames while repeating “everything’s just fine” through dead eyes. I mean it. If anything, I might even say that our lives have exceeded fine.
It’s a confusing reality when I think back to the limitations that were put on that word so early on. For years, Lucas had certain restrictions on what would be seen as a positive outcome by this age. Things would be “fine” only if he just suddenly hurdled his developmental obstacles. Anything short of that would miss the mark. He needed to eradicate all of those issues and, the day that happens, we’d all finally be content. When it started to become clear that wasn’t happening anytime soon, the scale for “fine” started to slide.
It became about his speech. If my son could just emulate a few words, we’d be good. How many sounds does a kid need to make? Five? Six? String them together and he’s on his way to giving a TED Talk. That’s it. That would be the day that everything would be fine. Yeah, well, as of today, that too still hasn’t happened.
So it shifted once more. This time over to “receptive language”. That’s the most important thing, right? It’s not about whether he can say the words but whether he can understand the words. However, although he’s made some pretty impressive strides through the years with his understanding, there is still quite a lot of miscommunication to go around.
Although it may sound strange, one of the funniest things we all do is when Lucas wants to put a show on, I will make him bring me the remote. I point into the living room and, with a double tap of my own chest, say “please give me the remote.” He then proceeds to come back with every random thing he can find in that general area – a slipper, a pillow, a toy ball, and others like it. I start laughing and repeat, “No, Lucas. The remote.“ I pantomime the buttons and he goes back out to bring me a coaster or a book. Pretty soon Olivia is laughing her head off and he follows suit. As he wobbles back in and out of the living room with the objects he genuinely thinks I want, he’s in hysterics. We all are. It may last a while, but he eventually gets the remote control and brings it over.
Now, if I could go back in time to when Lucas was two, the me of 2013 would think this was a terrible story. How can we be laughing together when he’s not able to decipher what we want? Shouldn’t we be fixing this somehow? Why is that happening? Who’s to blame? This entire situation is the exact example of a future that wasn’t considered “fine” by my early standards.
Yet, here we are and it is. In fact, it’s beyond fine. Things are great.
It took a real journey of understanding in order to reach that point, but I’m glad I did. For too long, it was the expectation that an idyllic scenario existed in the not-so-distant future which kept me from enjoying my life as it was happening in real time. I remember being hesitant to take videos of him at a young age because, in my mind, I should “wait until he’s talking.” I would make silent promises to myself about where he would be by his next birthday, even though I knew that his personal progress was largely out of my control. I lived on hope and dreams, but missed all the happiness that was in my present reality. It was as if life was in a holding pattern while I waited for this “fine” that everyone kept talking about.
It’s like how many of us wish our weeks away. Back at work Monday and all you can hope for is Friday. You drag yourself through the five work days until you make it to the weekend, where you blaze through it until it all begins again on Monday. Before you know it, you’ve wished away months and then years. The same type of thinking can apply to your own family while hoping for things – Autism related or otherwise – to change. The truth is that the best days of your life might not be ahead of you. They could be happening right now and you’re too busy dreaming for a false future to appreciate them.
No one can promise you a better tomorrow because no one can promise you any tomorrow. Your life could end as soon as you finish reading this sentence and the moments that you wished yourself past will be the only ones you had.
Most people want to know that everything will be fine. The good news is that it will be. It might not match that blurry image of perfection that you’re projecting into the future, but it will better than you’re imagining when you get there. You just have to make sure you take the time to notice and appreciate it when you do.