A Confession

(Inspired by a writing exercise in my special needs writing group.)

 

Domestic pain can be searing and it is usually what does us in. It is almost indigestible. ~ Anne Lamott

Dear God, 

Hear my confession! I was here last month. Same story, second verse, much the same, an not much worse. But not much better either. 

"Sign the book," Ben demands in his non-verbal way by putting it on top of my bowl of oatmeal, pen attached. 

"No," I repeat. "Ms. K. Said she was out Thursday and Friday. Today is Friday, there will not be anything to sign. Put the communication book back in your backpack, we need to go, or you will miss the school bus." I push the book across the dining-room table. 

He pushes the book back towards me. 

"Ben," I says, "it is time to go." I shove the book in his backpack, yank up the zipper. Then I guide his reluctant footsteps out the door, down the stairs, and into the car -- his face, downcast, scowling, refusing to look at me. 

"It's the OCD, it's the Down's", I think to myself. "Every morning has its routine. One of the routines is for me to sign the school communications book during breakfast, then I hand it to him, he reads what I write to this teacher, nods with a smile, and puts the book in his backpack -- but not this morning..." 

We wait at the school-bus stop in silence. No hugs, no "I love you"s or goodbyes when the bus pulls up. 

"Poor sub in his class room today," I think to myself as I drive down the road towards Lakewood. But... Why did I pick this battle? I could have just signed the #@%& book. I could have written anything in there, even if the teacher did not write any notes to me yesterday. If I had done so, our morning would have turned out differently. Why didn't that even occur to me? 

And then... the usual conflict in my mind -- the familiar spat where half of me wants to accommodate his OCD habits and the other half of me wants to stretch his flexibility -- begins to run in its familiar grooves. When to push, when to yield? For the next twenty-three minutes, as I stop-go-stop- go down Wadsworth Parkway, I feel like a louse. As Anne Lamott says, "Domestic pain can be searing and it usually is what does us in." 

Fast forward to Saturday night ... Ben opens his backback after a weekend sleep-over, and the first thing he hands me is the $#@$& communications book. 

I sigh, but this time I am prepared to sign. After all, it really doesn't matter, does it?

Ben flips through to the very last page, and holds it up to my face -- close, very close. I grab my reading glasses and pull the book out till I can focus.  

Entry -- Thursday: Ben had a great day, we made muffins. Signed Ms. Miller (substitute teacher).  

Entry -- Friday: Ben enjoyed frisbee and a math sheet. Signed Ms. Larson (substitute teacher).

Yes, my son has OCD and he has Down syndrome. He likes routines. But ... He is so much more, and I do not always believe or remember that. When Ben acts, sometimes I see OCD acting, or I see Down syndrome acting. 

When he looks at me, what syndrome does he see? What label can explain my inflexibility, my blindness?  

God have mercy on me, and help me 'see' -- really see -- so I don't inadvertently inflict pain where none is needed, not for him, and not for me.   

--- Amen. 

 

Art is Ben

It has been a while since I blogged. Benjamin is finishing high school tomorrow, and subsequent to this, all art from this school year came home this afternoon. 

I loved what he did in his painting class this year:

Splashes of color, some abstract, some drawing. Here is his master piece on canvas "Under the Sea":

Then there is a bit of nature:

... and some favorite cartoon characters, including ANGER from "Inside Out":

Mosaics and abstracts,

And here is the artist -

Benjamin - the artist

Did you know that Ben is an artist?

Ben is 18 years old, and not only is he an artist, in many ways his life is a work of art. He has his own special style of dressing, his ties and bow ties, his shirts. He loves hats, It is very important to his self-expression and daily functioning that he wears the pieces he puts together, so he looks the way that he best feels expresses who he is.

His life is a mosaic, it consist of fragments--some with sharp corners-- of health, illness, ability, disability, joy, sorrow, comfort and pain. Some events on their own may not make sense, the pain is too intense, the loss too severe, but as a whole, when we step back and look at his life --- well, this piece of his, which I call the wheel of life, may express it best:

I ain't no art critic, but to me the balance of colors, the subtle pastels and the grays, the big fragments, the little pieces fit together in a beautiful whole that inspires hope with its beauty. I love this wheel and it hangs in our livingroom right next to Mirabel's Stair Case in Provence. Perhaps you can see why.

Ben's first major introduction to art in high school has come from a wonderful pottery course he has taken a couple of times at Broomfield High School:

We put tea candles in these and use them on our dining room table.

I think the fruit bowl is my favorite, handy, useful, and beautiful all at the same time.

We keep our Holy Water in this pottery basket.

Ben's own tea mug, It is huge.

Pandora's Box - so named by Nikolas Jaqua, who received this for Christmas last year.

The pinnacle of his pottery work -- Ben's teapot.

Watch the colors in this mosaic:

There is both storm and calm in this paint on canvas:

Colorful and large, water, sky, and tree. This one is in Ben's room.

Ben also took a graphic arts course:

Animals in the Arctic

The MOVIE poster, and ...Yes, he is ONE IN A MINION :)

The artist's self-portrait in quadruple.

Self-expression is extremely important for those who struggle to communicate with the mainstream of society. Ben has a strong need to express himself. Art is, perhaps, his most effective medium. He is meticulous with his art and can spend hours on details. He will not quit until it looks the way he wants it to look. Yes, he also has the frustrated artist's temperament that growls and throws his hands up in the air when the medium will not comply with his intents, but he sticks it out, and you see the result -- Beautifully done, thoughtful, detailed, meticulous, expressive pieces that bring out, not just the almost-non-verbal young man that most of the world smiles at but often ignores. Here is a deeply-feeling, compassionate, and alive human being whose works in clay, color, and on the screen give us a glimpse into an intricately artistic mind and soul.

Thank you, Ben!

The best shot of Ben, ever!!

[Michelle took the top and bottom pictures of Ben at school and sent them to me. I took the others with my iPad (next time, I will use my camera instead for higher quality)]