the kandinsky is painted on two sides

“Oh, this is a Kandinsky!” 

“A double – one painted on either side.”                  

“May I see?”                  

“Yes, of course.”                  

“Extraordinary.”

“What makes it exceptional is that Kandinsky painted on either side of the canvas in two radically different styles. One wild and vivid, the other somber and geometric.”  

“My God!”                   

“We flip it around for variety.”                    

“Chaos, control. Chaos, control.” 

“You like? You like?”

~The Kittredges showing their prized painting to Paul in Six Degrees of Separation

 

Here’s the thing about a blog. I bring you these little slices of our world. I try to make them pretty or at the very least entertaining or provocative so that they might keep your interest. Of course I only write what I want you to see. Sometimes I think the rest of it is extraneous. Sometimes I think it’s too emotional. Sometimes I think it’s too personal. But the point is that, by definition, you’re only seeing the part of the picture that I show you. And you, as a dutiful member of the Us Weekly generation (oh, admit it!), you happily go along for the ride. Just like you pretend that the photos of Angelina Jolie are always that closely zoomed in just so that you can see each hair on the heads of her beautiful, multinational brood and certainly not because they are cropping out the multitude of nannies and bodyguards in the background. Heavens no!

 

But just like the photo of Angelina, the smiles sometimes fade once the flashbulbs are gone.

 

I spent last night feeling sorry for myself. Feeling like a fraud. I’d given you – given myself – the gift of this very one-dimensional picture of Kendall yesterday. It was a delightful picture of Kendall conquering the world. Kendall scoffing at the labels, beating back the doubters, bursting through any and all limitations. In four sentences I showed you her beaming, balls-to-the-wall Mama who wouldn’t, couldn’t be discouraged. It was a pretty picture. It was downright inspirational. It was heady stuff. And I was flying high off of it, not to mention your praise and encouragement. How I adore you!

 

The higher we fly, the harder we fall.

 

I came home ready to see that take no prisoners kid. The one who wouldn’t be defined by this thing that we wrestle with daily. The kid who could beat anything.

 

Turned out that kid was on hiatus. Pooped I guess after a long and stimulating day. Climbing mountains and slaying one’s demons can take a lot out of a kid.

 

I came home and I was forced to confront the rest of the picture. I wasn’t ready for it. I didn’t handle it well. I got frustrated when I couldn’t find a way to break her out of her loop of perseveration while she sat moving one sticker at a time from its package to a sheet of paper.

 

“They are going to bed. They are wearing their pajamas.”

 

“Are they tired, Kendall?”

 

“They are going to bed. They are wearing their pajamas.”

 

“Are they sleepy? Did they have a long day?”

 

“They are going to bed. They are wearing their pajamas.”

 

“Is someone going to sing them a lullaby? Who is going to tuck them in?”

 

“They are going to bed. They are wearing their pajamas.”

 

And on it went.

 

I couldn’t get us out of the Carousel of Confusion, so I sulked and walked over to Matt in the kitchen. The timer on the oven beeped its notice that it was done.

 

It broke my heart and opened the floodgates when I looked over at the table to see Kendall hunched over, rocking, hands clamped tightly over her ears saying, “No noises. No noises.” Over and over and over again.

 

I fought back tears but I lost.

 

Darby had a friend over for a play date. They came down to say hi. As soon as Darby’s friend came over to her, Kendall squealed with delight and YELLED, “A, do you want to do the Mambo?” And then in what sounded like a VERY loud impression of a Spanish speaking dolphin she YELPED “Aye Yay Yay Yay Yay.”

 

A stood there looking stunned and confused. Increasingly so as Kendall repeated this overture the second, third, fourth and fifth times. She finally walked away.

 

A stayed with us for dinner. We went around the table asking each child to tell us about their favorite part of the day. A talked about making a picture book at her camp, Darby told us how the music teacher at her camp (whom she adores) told them a story about a giant dragon, larger than our house (and the supermarket too .. big as the MALL!) who befriended a boy named Jackie and then .. “Do you see where this is going, Mama? It turned out to be Puff! Puff the Magic Dragon and Jackie was Jackie Paper like in the song!” I asked Kendall what she did at school. She said, “I liked playing with you.” (I wasn’t there.)

 

She needed breaks during dinner. She asked three times to go upstairs. We walked around the house (office, dining room, back to the kitchen) to give her the minute to clear her head that she obviously needed.

 

And I watched it all through the lens of our guest. What does this look like? The squealing, the phrases repeated ad nauseum, the covered ears, the LOUD requests to Mambo? Did I mention the pretend Oreo that Kendall was trying to shove into A’s mouth for a good three minutes?

 

It hit me like a ton of bricks. My daughter has autism. And even the fabulous days and the incredible victories and the kick @ss top of the world moments don’t take that away. They eat away at its import, no doubt. But they don’t take it away.

 

I most often see Kendall in the bubble of our family and friends. When I see her interact with peers it’s often facilitated. Even when it’s not, the peers that she’s interacting with are neighbors who get it or they are the kids from her school. Her glorious, safe, aware, integrated school where half the kids have some kind of special needs of their own and the other half are so used to everyone having those special needs that they don’t know the difference anymore. (Note the subtle plug for inclusion.) They get it. The people who I see her with get it. They know very well that Kendall might ask them to Mambo, that the stickers are all going to bed and that squealing is a happy sound.

 

But it’s very different when the world gets bigger and the people in it don’t know that they may need to adjust their expectations.

 

Kendall starts kindergarten in five weeks. She will attend our neighborhood elementary school with a full time behavioral aide. But her world will be much, much bigger. What will happen when she starts nicknaming the kids? What will happen when she runs around the playground squealing? What will happen when she asks them over and over (and over) again “Are you a boy or a girl?”

 

What happens when the boy down the street is too cool to say hello to the weird little girl who runs around asking everyone his or her name?

 

I worry for my baby. I worry when I am forced to see her through the lens of that bigger world. I worry that I can’t educate everyone. I worry that I can’t teach them to be understanding and patient. And I can’t. So I need your help. Please, teach your children. I implore you. Talk to them. Tell them that not everyone is like them. Teach them that it’s never ok to tease or ignore or exclude the kids that are different. Kids don’t get this stuff intuitively. It’s up to us.

 

I can’t do it alone. I’m not good at admitting that. That there’s something – heaven forbid – OUT OF MY CONTROL. But this is desperately out of my control.

 

So, I spent the evening feeling like a fraud. I felt like I sent you a close up photo of a soldier rescuing a puppy in the middle of a war. It’s real and it’s wonderful, heartwarming and inspiring, but when you widen out the lens, you see the pain and the destruction in the scene.

 

I still see the soldier, but sometimes the war creeps into view.