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 Brooke yesterday. It was a delightful picture of Brooke conquering the world. Brooke 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, Brooke?”

 

“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 Luau 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 Brooke 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.

 

Katie had a friend over for a play date. They came down to say hi. As soon as Katie’s friend came over to her, Brooke 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 Brooke 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, Katie 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 Brooke 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 Brooke 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 Brooke 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 Brooke 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.

 

Brooke 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.

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14 thoughts on “the kandinsky is painted on two sides

  1. You’re not a fraud. You’re the Mama who loves her baby–with or without Autism and you’re doing one hell of a good job. Sometimes, crying has to be part of it.

    You and Brooke are loved.

  2. Hey lady. it’s never a good excuse to say i am busy, but i think of you lots and always mean to write… I am sort of keeping in touch from this end by reading your brilliantly articulated experiences; and by the way, i honestly don’t know that anyone can be authentic 100% of the time unless that person were say a very old tibetan monk. anyway, my love to you and the family.

  3. Sometimes I feel like I can say that punkin has autism till I turn black and blue and the people closest to me will still ask me whats wrong with Punkin when she is having a bad day, which is most days (even my son who is 21 years old still do this too. You would think he would know better). But yes we as parents need to educate our children that we are all different. Even though we have been dealing with this for 15 years, it still surprises me how children will stare and make rude comments and the parent just sits by and say nothing

  4. Oh, honey… Don’t you know? That’s how it is for most of us. It truly is. I spent an hour SOBBING after watching “Autism the Musical” because apparently at some point I had secretly convinced myself that Foster doesn’t have autism. And then I saw those kids… And Foster SO has autism.

    The thing about these kids is that we want their highs to define them, and not their lows, or even the in-betweens. We feel like we need to convice the whole world – and sometimes ourselves along with it.

    Brooke is still amazing – even without the rose-colored glasses. And so are you!

    xo

  5. First, please don’t feel like a fraud. I think it’s important that we celebrate the highs, because as we all know, there are plenty of lows.

    I too find myself getting lulled into that false sense of security, that things are getting better, that the worst is behind us, then BOOM there is a new “challenge”.

    Kate starts kindergarten in the Fall too, so I can totally relate to your anxiety. Hang in there!

  6. You expressed beautifully what I feel on a daily basis. I just tell myself no peaks without valleys. No success without failure. She’ll get there. Devin will get there. You and I will get there. Oh and ummm our control issues will be along for the ride. I think you are winning the war.

  7. Thanks for your honsety. Thanks for articulating so well what we go through on those days when autism really shows up… eventhough we’ve known for years, the shock is fresh and the pain is still raw somehow. Thanks for offering us another slice of your world – it’s just as tasty, jess. You know. It makes the sweet days that much sweeter and the triumphs that more glorious. The Brooke I have come to know is going to BLOW OUR MINDS. Look out, kidnergarten.

  8. After reading blog after blog about the joys of parenting children on the spectrum this morning, I was feeling more alone than ever. I know that we all want to share our proud moments, our insights, our gratitude, yadda yadda yadda. But sometimes, pretty Kodak moments are not what I need. I need to know that I am not the only one who struggles and grieves and makes mistakes… lots and lots of mistakes. You are my hero today. Keep it real.

  9. Jess – I have read this post a few times and I am still taking it all in. It swells emotions like the ocean swells tidal waves. I am reading people’s reactions to your post just because their wise words help me sort through my own feelings as well. Mara’s comment above makes baring your soul reason enough but I want to know that I hear you. I hear you loud and clear and you can be DAMN SURE that I will continue to speak to my children about never teasing, ignoring or excluding any child. I pledge today to join you in your mission to educate people. I will never, ever remain quiet if I can help a child and I will look for opportunities to educate anyone and everyone who will listen. You may not be able to control the world but let me assure you that you are changing it. Hugs, April

  10. Some days I never want to leave that lovely little school our daughters attend. There there are no “weird” kids. Where everyone gets psyched about the little baby steps they take which look like absolutely nothing to the outside world. I have left there a few mornings and wondered how great inclusion really is. I don’t mean the kind of 50/50 inclusion we have the preschool, but the kind of inclusion we have at the elementary schools–where there is one or two “different” kids in the class.

    I really adore your daughter. I often find myself falling in love with the kids my children love, and that has happened with Brooke. Sometimes, I read your blog and think that “weird” girl happens to be the kid my daughter calls “my best friend, Brooke.” For a long time, I think I saw Brooke as just a little different. Sometimes I still do and sometimes I really see the autism too, and think, “wow, they are up against a lot.”

    But I still think she will do well. I refuse to believe anything else. The doctor who told you guys she would lead a lonely life. Hah! This is someone who can find love in the world. I know because Lolli loves Brooke. The ability to find love in the world is really, really big.

    So, think of me as someone who is holding hope for you. On days when you feel like you are running out, I have plenty for you and your girl.

  11. Well here’s what I think. [not that you asked as such]

    Firstly, you’re not a fraud. You’re merely doing what many of us do, practice seeing the glass full, concentrating on the positive, acknowledging and celebrating their achievements.

    I felt very similarly [I think] a few years ago after an IEP. They were [and are] doing marvelously but the truth of the matter was there in black and white, the gap between them and their typically developing peers was actually getting wider the older they grew. It was quite sobering at the time.

    It dawned on me that I needed to adjust my focus.

    It is very hard to ignore ‘people’ and what they ‘think.’ I shall willingly lend you my Rhino hide and fake plastic tusk to wave at them in a non threatening manner.

    Best wishes

  12. Look at that date. Four years later see how far you’ve come. A fraud would never have made it this far. Godspeed to the brighter side of today.

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