My daughter was just shy of three when her brother was born. Without her being so close in age, it would have made spotting his initial delays so much harder.
All of the things he was supposed to be doing, she had just done. All the milestones we had just finished celebrating, we were awaiting with bated breath. Every missed crawl and every late movement was first and foremost in my mind. All I kept thinking was, “Don’t think it.”
But I did think it. I thought it every single day. I wondered if those around me were just lying to themselves or if they were just unobservant to a ridiculous fault. After all, I couldn’t be the only one seeing that Lucas wasn’t sitting up at the same time his sister did just two years earlier. It was like we were all play-acting for each other.
It wasn’t just the delays that were making me worry either. It was all the little “red flags” that we have been taught through the years. It was the flapping of hands when he was excited and the aversion to eye contact. He didn’t look up when you entered the room and rarely noticed when a new person was around.
The biggest obstacle of it all was the waiting. With physical things, you can tell right away. A doctor examines them and says, “Oh yeah. There’s a problem with his leg.” Then you brace yourself for the good or bad news and accept whatever comes next.
With autism, you get a lot of shoulder shrugs. No one knows anything about anything and you’re told to wait it out. Anything can happen. We’ll just have to wait and see.
You meet arrogant specialists who speak to you like a child as they give you advice that you’ll later learn is completely wrong. You’ll meet people who assure you that there’s nothing to worry about, as you worry your brains out. You’ll find “therapists” who make you feel worse than you ever imagined possible.
And after all that, you still have no answers. You still wait and see.
We waited and saw with Lucas for years. People would ask us too. They’d say, “Is he talking yet?” It was one of the hardest things to reply to because, as the months ticked by, their replies to my reply were less hopeful. The worst response they’d give:
Don’t worry. Everything will be OK.
Maybe you’d get a story about a distant cousin they had who said their first words at seven. There would be anecdotes that didn’t help and words of wisdom that didn’t feel wise. Everyone just spoke for the sake of speaking. You eat a lot of word salads when you’re worried that your child might have a disability.
How that statement hurts is unique. Telling an anxious parent that “everything will be OK” feels good in the moment. It’s a year or two later, when they think back, that it becomes a dagger. It did for me. After all, what does “everything will be OK” mean? It means, “Don’t worry. He won’t have autism.”
But then you find out he does. Now what? Inadvertently, this loved one has given you a slow-simmering time bomb that forces you to realize that your life is not “OK.”
If you’re in that boat right now, I can’t begin to explain how much I can feel your anxiety. I remember it in my soul and feel it in my bones. Nothing hurt like that worry. Nothing – especially the eventual reality.
The reason why the reality doesn’t hurt is because “OK” isn’t measured by autism spectrums or words spoken. My son is, in the words of many, “severely autistic.” He has never spoken a word and there are life skills that we take for granted in our own lives that he might never do. He will require chronic care and there are aspects of his life that I know will never become a reality.
And believe me when I tell you, we are most definitely “OK.”
It didn’t feel that way when he was struggling to crawl or when we first heard the word “autism”. In fact, it felt like my world had ended. I started crafting worst-case scenarios in my brain and playing them out like home movies that hadn’t happened yet. My life was over. It felt that way.
Feelings aren’t reality. Reality is reality and, as the years went by and we lived that so-called worse-case scenario, I learned that my boy is more unique than I ever dreamed possible.
Is he a lot of work? Sure. Do I sometimes flash-forward and bit my nails with concern? Absolutely. But I do the same for his neurotypical teenage sister. I do it because they’re my kids and I love them.
Speaking doesn’t guarantee greatness. Great parenting does. If you raise your child to be the man or woman you want them to be in terms of morals and character, that’s all you need. My son might never marry or drive a car, but he will love with all his heart. He’ll be gentle and kind and appreciative. He’ll be all the things I wanted from a kid. He’ll be all the things that I worked so hard to make sure his sister became too.
That’s what “OK” means. That’s all you need.