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 daughter and I were sitting at the kitchen table filling out back-to-school paperwork, and she mentioned that she had had a dream in which her brother didn’t have Coffin-Lowry Syndrome. She 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 my daughter tentatively in the middle of the allergy form if she ever wishes that he didn’t have CLS. She 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 she 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 her steady, matter-of-fact tone, I heard and understood that she 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 she 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 she knew I didn’t.

Outwardly, I continued filling out yet another form. But inside, my synapses fired as I realized that my daughter, 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. 

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Playing out on the street

The two little girls next door ran towards me as I watched my son ride by them on his truck out on the street last night. Nearly out of breath they asked, “What kind of sickness does he have?”

A searing red heat flared up in me. I never know exactly what to say in these situations, but I do know enough not to answer right away, to take at least one deep breath while the adrenalin rush subsides. When I get in full Mamma Bear mode I want to lash out at these girls who I had never even met, but from experience some voice in my brain reminded me that while tempting, shaming them would serve no purpose than to leave me feeling like a jerk later on.

After a moment, I said, “Well, he doesn’t have an illness, but he does have a syndrome.” (Not my best response, but they have been way, way worse, let me tell you.)

They asked what that meant. Shifting gears away from the genetics lecture, I told them that just because someone is different doesn’t mean that they’re sick. And besides, we’re all different in some way. “But we tried to talk to him. We asked him what was wrong with him…” (seriously, doesn’t anyone teach their kids manners anymore?) “and we could hardly understand what he said. He just talked about the bus coming.”

“Alright, buddy!” I thought to myself. You know you’re not a typical mom when you’re psyched that someone can understand your child, even if it’s his response to a conversation he had with someone else three minutes earlier. And then my heart broke realizing that he was really trying to have a conversation with them but that they couldn’t connect.

We hobbled along through the rest of the conversation, me pointing out that we just moved here from the US and that my son, like the rest of us, was still mixing Swedish and English words, tossing in that weak platitude about everyone being different once more like a Hail Mary pass, before the girls had had enough and returned to their part of the street.

The fire that flares up isn’t directed at these girls. Possibly a little bit at their parents, I’m ashamed to say. But mostly at the reality that my son is growing up different in a world for which differences of many kinds means “sickness.” Where different means “I don’t have to see you as a person.”

I’m not suggesting we shouldn’t notice difference, that we shouldn’t be curious about it, try to understand it, or even to appreciate it. That’s not diversity, that’s denial. But what if we could look at others and notice the similarities first? “Here is a person,” we would say. “She has loved like me, bled like me, struggled like me, laughed like me. And by the way, her hair is curlier than mine.”

The fire isn’t just an anger. It’s a sadness that my son is growing up in a world in which the main question it is asking him is “What is wrong with you?”

What will it take for this to change? How many years or even generations of retail, one-to-one conversations will we have to have? If last night is any indication, we will be waiting a long time. Is there any way to speed this along? Where do we find the energy and courage to keep at it, when it would be so easier to go inside and never come out to play again?