Tuesday, February 26, 2013

Words on the Blackboard

My brother is 30 years old.

My brother cannot read. He cannot write without someone holding his hand. He, to my knowledge, never engaged in pretend play. He's never told anyone he loves them.

I love my brother with all of my heart. I pray that he continues to learn until the day he draws his last breath. I will never give up on him.

But there have been times when my brother's lack of ability has frightened me. And no more so than when Ethan was diagnosed with autism.

I've written of this before. Sitting in a small room, listening to two strangers confirm that, "Yes, we think your son has autism" when your son is just 22 months old is scary enough. Hearing those words and already having a picture of autism cemented in your mind is even more frightening.

When Ethan got his diagnosis, I couldn't help but wonder. At the time he spoke about 5-10 words regularly, and didn't combine them. I wondered: would he ever talk? Would we have conversations with him? Try as I might, I couldn't conjure a picture of him in my mind a year down the road, two years, five. I could only see where we were right then -- that, and see the only other autism I had ever known. And so even though the kind doctor who had given us Ethan's diagnosis said right then and there, knowing my history, "Ethan is not your brother," I just didn't know. None of us can ever know definitively how these things can play out. That is one reason today I still carry hope for Andy, when I think of him not speaking for years and years and then suddenly singing "Happy Birthday" in the car when he was maybe 10 years old.

Of course, over time Ethan has showed us he is Ethan. He is not Andy, he is not a savant, he is not "just a little quirky," he is not on the severe end of the spectrum, and he doesn't have Asperger's. He has decidedly mild classic autism. At least right now. He loves traffic lights. He loves board games. At times, he really loves people. He isn't obsessed over video games, but speaks of them and plays them often. He can be extremely affectionate. He is a whiz with numbers. He often prefers things over people. He is just one more person helping to make up the wildly varying composite picture of what autism is and what it looks like.

I'm amazed sometimes at how different, yet similar Anna and Ethan are. He adores numbers while math brings her to tears. They both have quirks and would rather be playing on the computer than at a party with people they don't know...yet both have their moments of pure joy with friends. Anna is intense while Ethan is more laid back. They both hate cleaning their rooms (okay, what kid doesn't?). They both love swimming up in Maine more than almost anything. Anna adores reading and learned to read by the time she was four, heading toward five. I was six and in first grade when I read my first sentence, back in the Dark Ages. And Ethan? Here he is now at 5 and 1/4 years and...oh my...he's learning to read.

Like many kids, I'm suspecting, Ethan learns in fits and starts. There are explosions of growth and more latent times. A year and a half ago, we got him a tracing toy that taught him his letters, and how to write them. He still struggles with writing some letters, but he's known upper and lowercase since then. Thanks to big sister having spelling tests and his affinity for memorization, he's picked up some words over time, and more importantly, has picked up the concept that letters make words. Lately when I've been reading to Anna I've caught Ethan leaning over my shoulder, trying to find words on the page he knows (mostly "no," "of," or "go").

The other day Anna and I were goofing off on the little chalkboard we've had kicking around forever, and she started writing simple words and sentences, things like, "Pat sat on a bat" or "a cat is on a bed."

"Ethan, I want you to read the sentence," Anna said in her best teacher voice. After some cajoling, Ethan came up to the board. He couldn't read Anna's sentence (among her many good qualities you will not find neatness) so I wrote one. And then, as I pointed to each word, I watched as, for the first time, my boy read all the words.

Every parent, any parent would see this as a milestone. Anna learned to read so fast we almost felt as if we didn't have time to enjoy, to savor it. She picked up reading so effortlessly, we blinked and she was reading paragraphs.

And here was Ethan, putting words together.

Sitting in that room at Connecticut Children's Medical Center more than three years ago, I just could not see it. There is no way I could fathom this boy, this one reading words on the blackboard.

We must remember this. I pray we can remember this. When things seem darkest...when our minds can't conjure something positive...when our thoughts and feelings tell us something completely contrary --

there is always hope.


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