Sunday, December 15, 2013


We sat in one of the empty classrooms, nearly three years to the day when Ethan started in the public school system. I've gotten to know Mrs. D. and Mrs. M. well in these three years -- and more importantly, they've gotten to know Ethan. Each year around parent/teacher conference time, I make an effort to meet with them, the speech and special ed. teachers, in addition to Ethan's regular classroom teacher.

"We're running out of things to talk about," one of them joked, as we briefly discussed his IEP, of goals met and new ones developed.

"Seriously," the other said, her voice quiet. "He's all set for this year - but when we meet about next year, I don't think (the principal) is going to want to keep him in special ed."

We went on to talk. Next year, they both felt, he'd probably be discharged from OT. In his social skills group it's hard to keep him on board with the other kids because he's picking up concepts so quickly. His only current behavior problem is acting silly in line. His academics are nearly at the end of the year level across the boards.

I sat there and listened, and I didn't know what to feel. Or maybe I felt too many things. Maybe I was thinking of that day three years before when we met about his placement and were told he needed to start in the special ed. classroom, that he couldn't handle the preschool setting. Maybe I was thinking of Dr. Milanese and the day he was diagnosed and that little stark room with those God-awful toys and clipboards. "Ethan is not your brother," she had told me, but I still felt angry enough to hit something, because what did anyone really know except the future is unknown?

This must be said: This does not mean Ethan is "cured" of autism. He may very well grow up, as a fellow autism mamma blogger was told about her autistic daughter when she was diagnosed, "to lead a solitary kind of life." He still often prefers objects to people. He still doesn't have great play skills. He still has "interesting" obsessions and has trouble relating and responding to other people at times.

This also must be said: Leaving special ed. doesn't magically erase his issues. It may actually complicate things. We may have more trouble accessing services, if he needs them later on as the demands of school become more complex. It's tempting to look at this way, but going this route is not necessarily the holy grail.

But our son is treading a much easier path than many who have received the same diagnosis. I'd be lying if I said I wasn't tremendously relieved, and thankful, and grateful.

I'd also be lying if I said there weren't many times I throw my eyes skyward and ask, "Why?" Not in a demanding, whiney way. Just in a human way.

I know there was nothing we did to "deserve" this. That's the hard thing to get around. Despite what many believe, I don't see there being a natural formula here, a 1 + 1 = 2, a I Did This So I Got That. I can't stand on a pedestal and say, well I just know it was this treatment or that therapy. A friend once asked, "Do you think that Ethan would have made the strides he's made anyway, with or without early intervention?" The question gave me pause, because at first I was so sure the answer was yes. But...I don't think it's as cut and dry as it seems. There are plenty of kids who receive plenty of intervention, much more than Ethan had, and do not make much progress.

Is this really "deserved?" My son was diagnosed with moderate autism at just 22 months old and now has autism that is not usually distinguishable to a stranger's eye four years later.

My 31-year-old brother with autism has never been able to communicate more than his basic needs.

It's interesting, this whole concept of fairness. Life is so incredibly unfair. I think that in sorrow and also in joy, when I see gifts that have been given, and those that have not. It's natural to do this, when we are looking at life through human lenses.

People live with cancer diagnoses, with pain that dehibilitates, day after day, year after year. A young mother just getting her life together dies and leaves two boys essentially alone to grow up. Infidelity out of nowhere detonates a marriage. Good people die; some wait patiently for miracles that don't seem to come; evil rules in unlikely places like elementary school classrooms, and wicked people live long lives and seem to get away with every wrong they've done.

In an interview awhile back, Bono from U2 talked about the concept of karma vs. grace.

"You see, at the center of all religions is the idea of karma," he said. "You know, what you put out comes back to you: an eye for an eye, a tooth for a tooth, or in physics—in physical laws—every action is met by an equal or an opposite one. It's clear to me that karma is at the very heart of the universe. I'm absolutely sure of it. And yet, along comes this idea called grace to upend all that 'as you reap, so you will sow' stuff. Grace defies reason and logic."


So what to do with this idea of grace vs. deservedness, this concept that turns our way of thinking upside down? I think there comes a time when we can't continue to think and reason and search for explanations to the unexplainable.

To God's grace, to good that seems undeserved, what can we do, but open our arms and receive?

And as for the bad -- to do the same. Maybe not embrace the pain or the wrongs or the disease or the heartache, but receive the grace and strength to walk through it.

So I will look at Ethan and resist the urge to question or apologize or predict the future...

...and will just whisper to the One above, "Thank you."

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