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?"

"Djon!"

"And who is going to clean it up?"

"Mommy!"

"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.

Molasses cookies

Something unexpected has happened to John. In November, he tried out a voice-output communication device for three weeks in a limited way and he started talking. Not with the device. With his mouth.

To reduce any unmet expectations, I had taken a break from thinking that he would ever be able to speak intelligibly. The break started sometime over a year ago when, after several attempted discussions with a speech therapist about exactly what his difficulties were and how we should approach them, including detailed information provided by me, said therapist concluded, "You know, I'm beginning to think this is more than a simple speech delay." I had other things to work on after the hair I tore out healed, and so I took the break, well except for two other speech therapists, but really it was a break, and when the year was up we focused solely on voice-output augmentative communication.

Before Christmas, he was sick with a cold. He wouldn't eat and I was worried about where that would take him. I now know that eating at 50% capacity for three weeks with five strenuous therapy sessions on the last week, can land him in the hospital and I know what the lab values looked like. (Well, hypothetically, since we don't really know that not eating caused the crash.) I wasn't sure what eating at 30% capacity for ten days but still drinking well, with resting protocol, would do. (Note: since this episode we got labs and came up with a new formula for just these occasions.) He had a sore throat and I was letting him eat ice cream and whatever else I could get in.

John was sitting in his highchair scribbling with markers, a super-favorite new pastime, and I had just made dough for my grandma Lucy's amazing molasses cookies, rolled the balls in sugar, and baked them, all in front of him. He showed no interest. I took the tray out of the oven and set it far away from him on the table while I went to get the spatula. That is, I wanted to get the spatula, but I was stopped by a sudden storm of protest from John. "Uhhhhnnnn! Uhhhhnnnn!" Maybe there was something wrong with his marker. I tried to step away again and got the same thing. Frustrated, I considered ignoring him but I stopped and paid attention. With little patience, I said, "John, what is it?"

"Cook-ee!" He actually wanted one of those brown things. Then I remembered that I had made them once, months before and he had loved them. These cookies are very soluble in your mouth, and that is John's favorite thing. Chewing for him ranges between challenging and impossible. The cookies are not pale colored and lightly vanilla flavored, though, like everything else he likes, and I can't explain that part.

He ate three that night, a caloric miracle. I was thinking about how adding some vitamin drops would probably make the cookies superior to the liquid nutritional supplements out there but as I started on the question of how you would increase the protein I had to stop and search for a tin to mail the cookies.

The next night he was sitting on the floor in the kitchen doorway. He ate one or two cookies. I gave him another. I was working in the kitchen again. He started breaking the cookie into bite-sized pieces. After a few minutes I looked and the cookie was in tiny pieces and he was intensely fingering and working the chunks with a combination of the enjoyments of ripping paper and squeezing Play-Doh.

"John!"

He looked up.

"What are you doing?"

"Cook-ee!"

"Are you going to eat that cookie?"

"Uh."

"You're not going to eat it, are you? You're just goofing around!"

Pause.

"Goo - ih a - RAO!"

"Did you just say goofing around?"

"Goo - ih a - RAO!" (cute smile)

"Hey everybody, John just said goofing around! Come here! Listen to him!"

He must have said goofing around ten more times that night, and twenty more times each day that week. Many of the times were with that cute, attention-loving smile. Two weeks later when his new speech therapist asked what he did for the holidays, he looked down with a new, shyer smile and diligently said, "Goo - ih a - rao!"

I get worried about him, of course. I was kind of thinking that his not eating would lead to us spending a day or two in the hospital just before Christmas and I made a half-neat pile of our clean clothes that could be scooped up easily later, in case we were at the doctor's office and they said that thing, "Well, I'd like to admit him," that I now know they just say sometimes.

I worry, and worry, and then he does something like this, and he just shines past it all. He is so . . . shiny.

About four days after the cookie-mushing incident, he started eating again. I know this may be normal for his system, and I have the comfort of having read stories from other families about many types of not eating, half much more severe than this. I don't know what John's comfort is when he doesn't feel good enough to eat, but I suspect that when he has the energy, that it is - goofing around.