Friday, February 7, 2014

Do Me a Favor

Christine Stephan
daysixtyseven.blogspot.com


I don't like to advise people. I don't like being in a position of telling others what to do. But I am a person of strong opinions. And just this once I'd like to tell you to do something. And by "you," I especially mean those who love and support non-speaking autistic people of all ages.

I want you to promise that when you find yourself explaining to someone that you have no idea what your loved one knows or understands that you will also quickly explain that you believe he understands everything and just hasn't yet found a way to let the world know.

When you observe your loved one behaving in a way that you don't understand and he can't explain, promise me that you will believe that he is trying the best he can and that he is as frustrated -- probably more so -- than you.

When you see that she can't master skills that come easily to others and that dark fear that it will always be this hard creeps into your heart, promise me to believe in her ability to learn and achieve.

Please, just believe.

It's the most important thing you will ever do for the person you love.

Believe, because if you don't that's just one more hurdle for this person to overcome. And believe me: they have it hard enough already.

Only 18 months ago I was working on 1:1 correspondence with my son, who was nine. When I asked him to hand me 4 plates each night before dinner to set the table, he would hand me plate after plate, counting each as he went: 1....2....3.....4....5....6.....  He would have kept going if I didn't stop him along the way. Each night was the same. I assumed, wrongly, that Oliver didn't fully understand the 1:1 concept.

Now that Oliver can communicate I see that his difficulty was in another kind of processing. He couldn't simultaneously process the counting and the physical actions. I cringe now when I imagine the pressure he must have felt to get it right when his body and brain weren't working together. I understand now that his true challenges were masked by how hard he works to compensate for a body that doesn't cooperate. And even though my boy and I are pretty much inseparable, and I like to think I'm pretty observant, I had no idea that he had so much trouble controlling his body. If you're ever lucky enough to see this boy on a bike you'll know why. On two wheels he is grace personified.

It never occurred to me to load his iPad with math apps geared towards fractions, decimals, and algebra but now that I see how easily he navigates them I regret that they weren't there to explore alongside the colorful counting apps that I thought he needed. I regret that I didn't give him the opportunities to display an interest in things that I assumed he wouldn't understand. I regret that my assumptions limited him when they should have been expanding his world.

I regret.

So now promise me that you won't also feel this deep regret at some point in the future.

Go now to that person you love and tell him that you believe.

Even if this person you love can't eat with a utensil. Even if she hasn't yet mastered toileting. Even if she can't manage the simplest communication system and even Yes and No are hard. Even if he never seems to be paying attention and can't sit still for a second. Tell him that you believe. And keep saying it until you are both convinced.

And on the days when it's hard, say it even louder.

Fill this person's life richly with thoughts and ideas. Read aloud what interests you and share your thoughts and opinions as though your words are a life line because they very well may be what is feeding his spirit. Play audio books before bed, choose classics that appeal to people of any age. Listen to the news together, NPR, TED talks, documentaries, and then talk about it at dinner time, even if yours is the only voice. Both of your lives will become richer.

Only 18 months ago I wasn't sure my son knew his last name or understood, exactly, the concept of birthdays or anything abstract.

Two months ago he wrote these words: "I couldn't tell people that I understood everything. People treated me like I just didn't think but that is all I did."

So promise me that you will believe this also to be true of the person you love. Sustain your belief even on the hardest days -- because yes, it seems impossibly hard some days -- and say it loudly for everyone to hear.

Because by making this promise the only thing you risk losing is regret.

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Previously published at daysixtyseven.blogspot.com.