(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.
