I call this moment my “number one reason to love autism moment” because, truly, it was the first time I ever fell in love with autism. This was the first time I realized there is some crazy magical stuff inside of autism and just when you think you understand it all, it will knock the wind out of you.
In the beginning, in those newly diagnosed moments, autism is every bit of 100% scary and overwhelming and your moments of hiding in the bathtub become more plentiful as you try to hide from the thing you don’t understand and the thing that is slowly taking over your life. In some deeply defining life moments, autism becomes either a dark pit to fall into or one to pull yourself out of but, honestly, in those very beginning moments, there is no light, there is no positive and, clearly, there is no magic or wonder to be found. It is mostly black and sopping wet from the tears that seem to be continually clouding your eyes and racing down your face. And no, in those early days, there is no way to stuff down those tears because there is no happy place to hold on to. There is only black and wet and no matter how much you love your kiddo, you might still be sinking because, mostly, you are lost in uncharted territory.
And you roll along like this, locked inside your tears and your pity, concentrating on all the wrong things until, thankfully, one day it happens. One day, in a moment you aren’t expecting, life reminds you that sometimes, life is not what it seems and sometimes, even the grown-ups get it all wrong.
One unexpected day, while lost and wandering in your uncharted territory, autism sneaks up in the middle of the wooden blocks you and your son are playing with and sparkles right out loud. While you’re hunkered down tight inside the blackness and the slipperiness of your sobbing, autism rises up and you don’t even notice what’s happening until the sparkle wallops you hard and leaves you utterly gobsmacked.
Autism can do that to grown ups.
It can reduce you to this pitiful mess until that one little moment when the spark and the sparkle rise right up in front of your face and you see autism for the very first time. That’s when you stand back up, crawl out of the black pit and realize there is so much more to see outside the blackness if you open your eyes. In that sweet moment when your eyes do finally open, you are able to see that first beautiful glimpse of the crazy magic sparkle that tells you to hold on to your hat because autism is going to be a wild ride. As I discovered, it is so much more than you every thought it could be and, sometimes, the ‘sign’ you’re looking for will start off as one tiny spark.
That’s where my son and I were when it happened.
He was playing blocks on the floor in our Ohio living room as the snow fell outside and the fire roared a few feet from us. It was one of those profound moments that etches itself forever into your memory so that, a decade later, the details feel like yesterday. I’d like to say we were playing together and enjoying a precious mom and son moment but, really, he was stacking the blocks and I was trying to be with him. That is how autism rolls. Socializing, pretend play and together play are just not our best skills. Side by side play and tolerating the existence of someone else is the kind of play we were involved in. That morning, he was tolerating my existence near his blocks in the living room with the fireplace when it happened.
I remember him stacking the blocks and grunting his sounds that morning. He was, according to all the bench marks, non verbal. He made sounds here and there and grunted a lot but words were simply a dream we still longed to hear. Grunting and stacking and then stacking and grunting. It was a bit on the monotonous side but he was at least interacting with the blocks and, for us, that was a step in the right direction. So I watched him stack and I listened to him grunt and I thought of the other things I could be doing. I thought this was me being present but, as that sparkle stood up in front of my face, I realized I’d been anything but present on that floor. I had mired myself into my own frustration and dreaming about all the things I did not have until that sparkle left me pretty gobsmacked. I was so busy getting lost in the blackness, I wasn’t seeing the brightness that was sparkling up around me. I wasn’t seeing the autism right in front of me because of the fear of autism that surrounded me down in the black pit.
I almost couldn’t see the autism sparkle because of the blackened and wet wall of autism that I was letting take over me. Yes, he was stacking and grunting. He was. But, when I came out of my own black pity fog, when I really looked at him and heard him, I realized he was counting the blocks as he stacked them and he was s-a-y-i-n-g the words, one to ten, as he stacked. Because he could not enunciate words well yet, his words were hard to catch and I had truly almost missed them. If I listened closely, he was saying the words! He was speaking in a whisper and his words were not spoken perfectly but he was saying them.
My boy was counting to TEN!
Autism is sneaky and quiet like that.
Sometimes if you blink you miss the good stuff and I almost missed it that day. That day I got the wind knocked out of me. I let out an audible gasp as I reached for the phone to call my folks and tell them about the sparkle in my living room. That was the moment when I threw the black and the wet out into the snow and realized how much my own pity party was crowding my ability to see my son clearly and to appreciate the brilliance that was sitting right in front of me.
That is the moment when the sparkle opened up another side of autism to me that I had never understood. If you choose to let autism be a game-ender then …well, it will be. Game o-v-e-r. But, if you choose to open your eyes to the sparks that are there, you can take those sparks and build on those strengths until they sparkle right out loud. The sparkle didn’t mean the autism game was over and we had won. Not a chance. It didn’t mean my boy was suddenly cured. It meant there was hope and it meant that autism is a huge mystery and if you check out emotionally, you may miss the very moments that are the mile markers of your journey. In every child the strengths are there but you have to look for them. They won’t always show up as a prodigy. Sometimes they just peek out for a mere second and you have to be vigilant in your observations to see them because, I guarantee you, there will be NO neon signs announcing skills. I promise.
After that day, I decided autism might just be the most scary brilliant thing I’d ever come to know in my life. There could be so much radiance sparkling just under the surface if you looked closely. I vowed right then we would not seal our fate because of the lack of expectation others held for him and I would never again hand him over to the dark side of autism that gave up before it ever got started.
Truthfully, just because you can’t immediately see the skills or the ability on the popular bench mark day…doesn’t mean it’s not there. It might just still be forming, more slowly and more thoroughly because, sometimes, that’s how autism is. It has its own calendar and sometimes it runs s-l-o-w-l-y. From that day on, I was all about the sparkles and making sure I was open to every one that came our way because if I was open enough to see the autism sparkles, I could build up every weakness I found. And from the bottom of my sparkling heart, I will tell you the greatest gift you can ever give your child is to keep your own eyes peeled because you never know what sort of surprise might happen your way and you have to be ready for it when it comes :).