Sunday, March 8, 2009

Eating rice with words on a moving sidewalk

I got to eat my old words a couple of weeks ago. The aug comm representative whose product line we don't plan to use sent a nice email to check in and see if he could be of service. By hitting reply, he happened to include the text of my very first email to him (to any aug comm rep), where I had described John and asked a lot of questions.

On October 24, 2008, I had written:

If I was to guess I would guess that within 18 months he would be able to 
combine words and that eventually he would have sentence ability and more.

If we assume that the 18 months would begin after acquiring a device (and we haven't acquired one yet, so perhaps they would begin around May 7, 2009), that would put him at combining words into phrases on November 7, 2010.

So why John? Why did he get a miracle talking cure?

Or is it a miracle talking cure, if the public can't understand him and I am still translating half of what he says to several intelligent people who he loves?

Communication with the public is undetermined for now. A mommy's translation is high- quality but not omnipresent, including across time. But to me, the team leader, and the vessel of mommy love poured in from some universal source, this talking is substantial and miraculous.

Some people's efforts did set my estimate straight, -er along the way. Just days after I wrote that guess email, a new speech therapist who specialized in aug comm took over John's case. Being both experienced and judgmental, I don't expect too much from younger professionals who don't have kids. But she sat John down with his 9-button talking machine that he had back then, played for a few minutes, and said that he was too smart for the 9-button device and that she would like him to trial a more advanced device that I had coincidentally been reading about the night before. I perked up, like someone who has been camping for days on a nonfunctioning moving sidewalk at the moment when the power comes back on.

The next time we walked in, there was the device, a Vantage Plus, and in three weeks with about nine practice sessions, John was saying some single words. They were the words from the Vantage, by the way. We stayed with this sprinkling of words until a doctor came along and started up another broken moving sidewalk, and soon the words were a torrent.

I was frustrated the past couple of weeks, about not being able to reach Dr. Sidewalk, about the nonanswer I got when I did reach his office, and for a little while, about the 9 months that passed waiting for this amazing treatment. I mentioned it to a mom I know who works in the medical field, and who has no doubt seen a lot of both healing and death. She calmly pointed out, "At least you found it sometime." Oh yeah. 9 months, as opposed to never.

That little sentence was so well delivered that I even got completely out of my progressive disease funk for the time being.

We have found so many answers that have taken John so far. Why us? Is this related to some future assignment for me? I hope so. Or, is the present assignment enough --stop, and accept it honorably.-- ?

I sat down at the computer this morning to order more of the magic maroon gelcaps. John wanted something fun to do, so I gave him his large container full of rice, with scoops, a Jeep and some tiny people to play with. It took a long time to check the products and place the order, but it was okay because John was being so good in the other room with his rice. When I was done I got up and came into the living room. The container was empty. Rice was everywhere: the living room, the kitchen, the bathroom, in every toy, on the piano. A thin layer of white rice was evenly distributed over the entire play area.

I made the involuntary noise that moms make when they discover this sort of thing.

"Who made this mess?"


"And who is going to clean it up?"


"Um, I think you are going to clean it up."

"No. I am gonna make another, big, mess!"

Yeah. Let's make another mess while the sidewalk is still moving.

1 comment:

  1. I'm glad you've found some augmentative tech that's helping John, and so glad he's talking and it's having a positive effect.

    The end of this piece is so cute and funny and true and touching.