More kitchen table talk

Is it possible to be a good student but a poor learner? I think so, based on my own personal experience. During my school years, good grades came easy. I was eager to please and to be praised, but unless the learning process happened simply through the mere act of being present in the classroom, I really didn’t know how to learn. It wasn’t just in the classroom that things were like this; life too dished up plenty of lessons about happiness, gratitude, generosity and the true nature of things, but unless they came with no effort on my part, they remained a mystery, like quantum physics or ancient Greek.

Lucky for me, parenting a child with special needs has helped make some great life lessons accessible to me, the poor learner. Lessons about the beauty of difference, the tyranny of ego, the gift of this precious moment, and the impossibility of permanence. Without the particular life circumstances that come from being my son’s mother, I don’t know that I would have ever really learned them. It doesn’t mean I don’t forget them sometimes (most of the time) but without him, they would be beyond my grasp completely.

When interviewed by Andrew Solomon for his book Far from the Tree: Parents, Children and the Search for Identity, (watch his wonderful TEDMED talk if you haven’t seen it), Karen Robard, whose son David has Down’s Syndrome, was asked if she wished her child didn’t have DS. She answered: “I would cure it in an instant to give him an easier life, but speaking for myself, well, I would never have believed 23 years ago when he was born, that I could come to such a point, but…it’s made me so much better, and so much kinder, and so much more purposeful in my whole life, that speaking for myself, I wouldn’t give it up for anything in the world.” It may be hard for some people to understand Karen’s perspective, but I do. Like me, Karen has a teacher in her son.

So last night my 10-year-old child and I were sitting at the kitchen table filling out back-to-school paperwork, and they mentioned that they had had a dream in which their older brother didn’t have Coffin-Lowry Syndrome. They proceeded to tell me of the zany antics that can only ensue in a dream world. I’ve had a couple of dreams too in which he is neurotypical and I have woken up feeling shaken. I had just watched the Solomon film earlier in the day and Karen Robard came to mind, so I asked them tentatively in the middle of the allergy form if they ever wish that he didn’t have CLS. They replied without hesitation yet without insistence: “No, if he didn’t have Coffin-Lowry, I would wish that he had it. He is perfect the way he is.”

I continued to scribble away in order to keep it safe for her to keep talking, as I try to do when the subject of her feelings about her brother’s disability come up. (My friend Susan calls “periodic check-ins,” and you never know when they will happen.) After a few more fields and a signature I casually mentioned that it’s pretty cool that they felt that way, because some people might not see that. Not exactly knowing where I was going with my next sentence, I simply said, “I mean, it’s kind of…” “It’s not hard, Mom. You can’t blame him.”

And in their steady, matter-of-fact tone, I heard and understood that they meant that not only could we not blame him, we could not blame anyone. And the reason we could not blame anyone was that there was nothing to be blamed for. Just as they said, he was exactly as he should be. Our family was exactly as it should be. Life was exactly as it should be. And furthermore, I learned that I didn’t always really believe that, and that they knew I didn’t.

Outwardly, I continued filling out yet another form. But inside, my synapses fired as I realized that my 10-year-old, with far less life experience than me, had already attained an acceptance that I was still struggling with. And finally, I was reminded of the biggest lesson yet: that life hadn’t put one great teacher in my family, but two.