I came across a comment on Reddit earlier today that I just can’t shake…
The discussion was related to vaccines and autism.
Now, I can usually only handle reading a certain amount of comments on this type of thread… Between people correcting other posters’ grammar, posts that ramble on with seemingly no point related to the topic and people insisting that anyone who disagrees with their strongly worded opinion doesn’t know the difference between their own rectum and a hole in the ground, I just get worn down too quickly to subject myself to that kind of torture for long. But before I abandoned this thread, I stumbled across a comment that hit me hard.
Most of the commenters were pro-vaccine, and one of the common themes among the comments was, “I’d rather have a child with autism than lose a child to a preventable disease.” I’ve said this myself hundreds of times. It’s sort of my go-to response when someone asks me if Nolan is vaccinated. (This reminds me of a discussion for another time: Things I’ve been asked as the mother of a child with special needs that are really none of anyone else’s business…)
I’m just going to paraphrase the response that I can’t seem to get past… The commenter (we’ll just refer to them as Redditor for the sake of keeping this easy) basically said that they disagree in some cases. Their sibling has a child (early elementary school aged) with severe autism (her broad description reminded me of Nolan at that age—non-verbal, a very uncertain future, etc.), and that if this child had died young of something preventable, he would be remembered lovingly. Instead, the parent’s life has been ruined by a monster of a child (the words ruined and monster are the commenter’s words, not mine). The parent has given up their career to stay home with the child, their marriage is crumbling and daily tasks are only getting harder as the child grows.
After my initial, “Woah… hold up there,” the first thing in my head was that if the child is that young, things will get better. That child is slowly going to get a better idea of how the world works and how their own brain and body work. Eventually the child and their parents will learn tactics to make things easier for everyone… We were told that when Nolan was younger, and it was true. That doesn’t mean things will ever stop being more challenging than they might be for a different family, but they do get better. And it doesn’t mean that things just get better on their own—it takes a lot of work… but it’s worth every bit of work the three of us put in.
Another thought was that my Nolan is an amazing human being. That will never stop being true. And I’m sure Redditor’s nephew is also amazing if Redditor is willing to take the time to see both the good and the bad. It broke my heart to think that Redditor may never have a positive relationship with this nephew. I hope that as their nephew grows and matures, they come to appreciate him as a person instead of dwelling on what they expect based on his behaviors at such a young age.
But mostly I wonder if this is how people think about us.
I mean, we’ve got our challenges. Our lives have changed drastically since Nolan’s diagnosis. And a lot of days are yucky. Okay most days have their yucky bits. Did I say most? I meant all.
But are our lives ruined? Absolutely not. Is Nolan a monster? I mean, he’s a teenager so he has his moments, but he’s no monster. He’s an amazing kid, and our lives are better because he is in them.
I sincerely hope that no one in the world feels like our lives have been ruined by Nolan or his autism. Even at our very lowest points, I don’t think we would have said our lives were ruined. We might not have argued if you’d said our lives were horrible in those moments, but we knew we would figure out a way to make things better. And while I can't speak for Kirk, I know the idea that my life was ruined never crossed my mind.
I mean sure, he’s ruined his share of toys, pants, blankets… you get the idea. But he could never ruin our lives. That’s just not who he is.
Anyone the time to see the whole person will understand that.