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.
He looked up.
"What are you doing?"
"Are you going to eat that cookie?"
"You're not going to eat it, are you? You're just goofing around!"
"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.