Monday, November 14, 2011

Hope in the Unseen

Ethan has been doing great lately. Ethan has been doing fabulously well. The other day his speech therapist sought me out on the school playground just to say how amazed she was at his progress.

"He was pretending to make a screwdriver blast off like a rocket!" she raved. "He's such a model for the other kids in the ABA room on Mondays." Her face was beaming. The other day I watched him trot off with the typical kids in the three-year-old class, no aide in sight. The special ed teacher nearby gave me an amazed glance, as if to say Well, would you look at that?

At home that little imagination is starting to take shape. His ideas are simple and repetitive but HE is generating them. Ethan is the one deciding the retractable tape measure is actually Swiper the Fox's house. Ethan is putting his creatures in a line and pretending they are waiting to go down the big tunnel slide. This is a big deal, people.

And I have absolutely no idea why.

The old saying about autism being a puzzle ain't kidding. If autism wasn't such a mystery, we'd have a cure by now. If any of us knew that all we had to do was A plus B to automatically generate C, we'd obviously we doing just that.

We haven't increased his therapy. In fact, it's decreased. I haven't done the one-on-one play dates I've wanted to plan for him. He hasn't had less technology/screen time to focus on more explorative and imaginative play. During the power outage he lived on a steady diet of DVDs and Angry Birds. He had an unscheduled week off from school in the dark and slipped back into the routine without blinking an eye.

It's hard not to wonder.

A year ago he was having 10-plus hours of therapy a week while making steady but certainly less significant gains.

Many, many others who have children with autism do everything possible to get their kids the most expensive therapy and latest treatments, they move heaven and earth to rearrange their schedules or their family's diet or their jobs, they get down on their hands and knees and they work and they pray and they play with their child and in the end only witness their child make the smallest of gains.

My own brother spent years at a school for children with autism and yet has never learned how or cared to play...never expressed an emotion with words...never said "I love you."


I know I could rest in my laurels and believe it's something I've done, or it's some testament to my faith and belief in Ethan's ability, in God coming through for me. There are so many people out there who believe if you just do enough, just believe enough, just (hold onto the illusion that you are completely in control) then everything will work out the way you want it to.

Or I can take the more difficult path. I can choose to trust when the why questions can't be answered. I can thank God for the gift of my son and the gains he's made, without the guilt of wondering, "Why us and not someone else?" I can choose not to be bitter about those who continue to struggle greatly, about a life that doesn't always have pat or logical answers.

I can believe that God has a plan for every single person with autism, for every person with special needs.

I can do my best as a parent and then throw myself back into the arms of His grace, a place where I don't have to make anything happen. And neither does He -- because He already has. Amazing things are happening in each life touched by autism, and sometimes those things have nothing to do with words spoken, or letters on a paper.

We had a guest speaker at church awhile ago who has a grown son with disabilities. I believe his son is in a wheelchair and is blind. He told a story about being on the beach one day when he saw a group of guys his son's age playing volleyball. He sat there in awe for a moment, watching the strength of their muscles, the way they were laughing and interacting with each other. And then he heard the vilest of voices whisper in his head, "Your son never got to play volleyball with you. You've seen other people healed, but not your son."

He gathered himself, and then he spoke back.

"Oh, I know," he answered. "But I see us playing volleyball. I don't know if it will be next year or 10 years down the road, in this terrestrial realm or in the celestial realm. But there will be a day when my boy and his daddy play volleyball. Maybe we'll have perfect heavenly bodies. Then we won't run, because we'll be able to fly."

I rejoice at Ethan's progress, but my hope cannot be in Ethan's progress. My hope, or my doubt, can't spring from cold, hard facts.

There is something beyond facts. There is Truth. There are miracles everywhere, in this world and in the world to come. If only I can see. If only I can remember.

Look beyond the window there
To the sky above to the open air
Look beyond what you can see
Close your eyes and just believe

The lion roars and the lamb lays down
They live together in a whole new town
They're calling me and they're calling you
From the cold hard facts that we're on our own
To the age old truth that we're not alone

- From the song "Emma (You're Not Alone)," by Jason Upton


Cheairs Redefining Typical said...

Oh.....I am so proud of your little Ethan and you! You are correct there is not an answer to the Why.....just Hope and Faith...beautiful post!

Anonymous said...

i love everything about this post.