Dichotomy of life as a mom of a son with autism
An article was shared with me recently that was one of those things that’s powerful – when you read something that just resonates with you, and you feel connected and thankful someone else found the right words to even begin to explain how you feel. A concept that seems so simple and understandable and explainable when someone more eloquent than you puts it into words, but that you’ve been wanting to try to relay to people forever.
So, the essence of it, for me, comes down to, how I feel about Luke’s autism in general. There are two main ways of thinking that are basically polar opposites schools of thought, and yet I feel strongly connected to both.
The article I read was more from the point of view of what causes autism, and did she even really care. Her first claim was that she didn’t and that it was simply the fact that her son was born that way. Whether that the actually the case or not, and whether it was preventable or not mattered not to her, because she had spent her life trying to foster an environment of acceptance of differences, both with her other children, as well as out in the real world. “He’s perfect just the way he is – he is the way he is meant to be. He doesn’t need to change to fit the rest of the world’s idea of what’s normal.” Sure, those mantras make a certain sense and I can agree with them to a point, also.
But they also boil down to a bigger philosophy and way of thinking – that even if a parent could wave a magic wand to take autism away from their child’s life, they wouldn’t. Ummmmmm. Yeah, well I can’t say I am a subscriber to that particular theory.
Do I think Lucas is a valuable part of the world just as he is? Of course. Do I find some of his idiosyncrasies endearing and shareable and smile-worthy and amusing? Yup. Do I work hard (harder some days than others) to find the brighter side of things and the silver lining in the cloud? Definitely. But if someone magically gave me the ability to remove his autism and make all the rest of his life not as hard as it will be, and I jumped on that opportunity, would that make me a bad mom? Okay, as I think about it – when I say make the rest of his life not as hard as it will be, I guess in a way, HE might be not view it as a burden or making his life tougher? But for me, and the worry of what will come of him when the time comes that I am unable to care for him anymore and make sure his life is just the way it should be… so, maybe it really IS all about me and not him at all and I am essentially a horrible parent and just want things easier for me.
I know all of us worry for our kids even after they get “all growed up” and launch into the real world. but the worry and amount of time I devote to thinking about building a positive future for Lucas as compared to the rest of the “kids” doesn’t even come close. And some of his siblings have had their struggles, for sure. So maybe it’s essentially that – that he doesn’t have the ability to worry about or really even consider his own future, and so I need to do it for him. And it’s not that I begrudge that, but it’s such pressure and worry and a weight, wondering if you are setting up the right thing – the things that of course allow him happiness, but also push him to a certain point beyond what he would do if you just gave him a choice. Balance in all things. Plus, it all becomes so much simpler if I just could predict how long I will be here to be “the one” to handle things for him and be the backup and safety net and over-seeer of things. That would make all planning SO much easier. But you have to hope for and envision the best, while preparing for the worst. And that’s just a heavy load to bear some days…
So, yes, whatever that makes me – if I had the ability to wipe autism out of the world, or at least out of Lucas’ life – I would take that opportunity and happily let him make his own mistakes just like all of his brothers and sisters have. But it sure is an interesting question to ask yourself if you’re a parent of a special-needs child, and what your answer means about how you are looking at the overall world and your child’s future and your role in it…