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From my wife, in honor of Autism Awareness Month.
Four things parenting a child with autism has taught me:
File this under Stupid Things People Say
Yesterday my wife hosted a playdate with a couple of neighborhood kids and their nanny. It wasn't all fun and games: my wife felt the nanny's eyes on her as she changed C's diaper (yes, he still wears diapers), and when she was comforting him when he bit his lip (sometimes small things really set him off, while bigger things do not).
The nanny also asked probing questions: does C ever play with other children? (Well, yes, his brother.) Does he speak much? (When he's comfortable, you can't stop him from talking!) Did we do genetic testing when we were pregnant? (Uh…)
But the best was this little gem: "And you love him? You really love him?"
My wife, nearly dumbstruck, answered simply, "Yes, I love him."
To which the nanny, reflective, replied, "I don't know if I could. I think I would just cry all the time."
Sigh.
This is the same nanny who often remarks how sweet C's twin brother is. It's true: M is happy, polite, and enthusiastic. He's genuinely appreciative of the littlest things. Maybe this is what happens when you love a brother whose magnificence seems small to others.
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When the evaluator finished telling us that, yes, C definitely had autism, I asked what this meant for his future. She sighed, said that was a common question, and then offered us the best advice we've received so far: "Don't try to predict where your son will be in ten years, one year, or even a month. No one knows, and anyone who tells you they do is lying. These kids can surprise us, both for the better and the worse."
Seems a million years ago that we received this pearl of wisdom, but lately I've needed to remind myself of it a little more than usual. It helps me get through particularly trying moments, those moments when I wonder, "Will it be this way forever?" or, "What will become of my son?"
No one knows, and there's a sort of paradoxical peace to be found in that mystery.
Here's a moment of pure, unadulterated joy. The twins (C on the left, M on the right) seem to be growing closer lately. Part of it may be more intensive group play during C's ABA therapy, but I suspect another reason is that we've begun to explain to M what is happening with his brother.
We've identified it simply as "C's ASD," and it's a label we use to explain things both confusing and wonderful. In some ways, M seems to be adopting the role of big brother (even though he's actually four minutes younger): he's become more affectionate and attentive toward C and, at times, intensely protective. Giving C's autism a label, without going into too much detail, seems to be demystifying it for M, turning a frightening unknown into an understandable known.
It raises the question, of course: how and when do we introduce this label to C? When would he even understand it?
In an excellent and provocative post entitled, "Wondering if you should have children or not?" Emily Willingham attempts to help prospective parents — primarily prospective mothers — answer that question by asking them a question in return.
I'll summarize what I think is the thrust of her post: While the chances are your child will be fine, a not insignificant number of parents will have a child with a lifelong disability, and there is no way you can control that. If you're not ready to commit every last bit of energy and time to that endeavor on the off-chance that this will be your future, don't have children.
In her words: "Parents are an accident or a developmental milestone or a virus away from having their lives change in ways no one can predict." She continues, "It's not a question of 'If I become a parent, will I still be able to work?' It's a question of, 'If I become a parent, am I prepared to be nothing but a parent all day, every day, if a sudden change, infinitely unpredictable, requires it?'"
Blunt, uncompromising, perhaps unpleasant, but true.
I don't know how I would have answered her question before becoming a parent. I think I knew it would be hard, largely because of my own experiences growing up (e.g., losing two brothers, etc.). All I know is that now that I'm in this life — like most parents in the same situation — I'm doing my level best.
That said, the fact is that the majority of this burden falls to my wife. I try to be the best, most engaged father I can. And still…her shoulders carry more of this weight.