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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Show me love

Everyone shows love in different ways. Children with special needs are no different in that regard, maybe even hardwired to be more different than usual. While Williams Syndrome is associated with a “cocktail party personality,” one of the defining characteristics of Autism Spectrum Disorder is a challenge to make typical social cues. Down Syndrome literature is full of descriptions of bubbly personalities. Not to mention individual personalities that create an endless rainbow of lovey-dovey possibilities. When it comes to showing love, these kids are all over the map just like the rest of us.

My son has a developmental disability described in the literature as being associated with “a gentle personality,” but he’s not very affectionate. Not that most nine-year-old kids are, but the frequency and ease with which my daughter can wax poetic on how much she loves her family provides a stark contrast at times.

Mostly I’m fine with that, despite my hallucinatory desire for parenting to be one long version of “Guess How Much I Love You.” There are small, subtle signs and I take them where I can get them. Like holding hands on the sidewalk because he’s nervous about falling. Like the 16-step hug I get when carrying him up to bed at the end of a long day. Every once in a while he’ll climb into my lap after dinner and lean back for a few seconds, letting his body sink into mine; I sit so still, not shifting, barely breathing, soaking it up.

In my needier moments, I flat out ask for affection, sometimes with success, most often not. In the minutes before he falls asleep, when he sometimes seems so clear and able to recall details about his day or ask questions that reveal an inner world much richer than I give him credit for, I’ll take a chance and ask if he loves me, hoping that in this moment of quiet and clarity he’ll indulge me. Last night, as we lay in the dark after reading the Best Buy flyer for the 100th time, I gave it a shot.

“Do you love me?” I asked. “Yes,” he sighed. “How much?” I prodded greedily. “One more minute,” he replied. I was confused and a little disappointed. Then I realized that in his life, “one more minute” are often the best words he can hear — words of permission to continue with a favorite activity after his protest over my request that we stop. As in: “Time to turn off the TV,” I’ll say. He’ll whine. “OK, one more minute.” Like that.

Pushing my luck, I asked, “You love me one more minute?”

“Yes,” he said, sighed, turned his back, and fell asleep.

Dear sweet boy, I love you one more minute…and back.

No big whoop?

The special needs blogosphere and social media outlets are abuzz about this recent Target ad featuring a boy with Down Syndrome. This kid is cute. Really cute. It’s great to see him there.

The big news isn’t the fact that he’s in the shot; what people seem to be focusing on is the fact that Target didn’t make a big deal about it.

I wonder, though, how they could have “made a big deal” if they wanted to. Send out press releases? Add a little arrow pointing to him with a label, “Check it out, we’re really cool”? I don’t think so. They didn’t make a big deal about it because simply including him is a big deal. Enough said.

I don’t mean to sound cynical. I am glad to see all kinds of people portrayed in media, there not because they’re a token representing a particular slice of the market, but because they’re just there. And if it gets folks talking about and encouraging true inclusion (like this great post by Shannon Dingle about the ad and creating inclusive religious communities), then I’m definitely satisfied.

We can celebrate this milestone. But let’s not say that we’re done, OK?

Here’s how we’ll know when we’re done: when all children are included, not only in photo shoots but in schools and communities and in real lives all around the world, when no one makes a big deal about it, and no one needs to point out that we didn’t make a big deal about it.