The Grocery List

Tony told Janey this afternoon he was going to take her to the grocery store.  She was quite happy, as she loves going to the store.  A few minutes later, she brought us the little notepad Tony uses for grocery lists.  We told her that was great---she had made the connection between the list and shopping.  But then she found a pen and grabbed the pad, and looked like she was going to try writing on it.  That was unusual---at home anyway, she has little interest in drawing or scribbling or any pencil to paper activities.  Then she stopped, put down the pad and started to scream.  She'd been having a banner weekend, and had been cheery for days, so we were startled.  She yelled for a bit, and then said "GREEN CANDY!"  Green candies are those striped round mint hard candies---she loves those.  And we figured it out, or we think we did.  She wanted to put "green candy" on the list.  Tony right away wrote it on the list, and drew a little picture next to the words, and showed it to her, and she seemed a bit calmed down.

The whole episode brought up a lot of questions and emotions in me.  First, did we interpret correctly?  Figuring out what Janey is trying to say is often a puzzle.  Did she just say green candy because she was trying to comfort herself when she was upset, maybe because she wasn't on the way to the store yet?  I guess I'm a natural skeptic, but I often default to assuming Janey isn't meaning to convey the more complex meanings that some of her actions could be interpreted as.  But assuming she was wanting to write green candy on the list---well, that's a little heartbreaking.  It would mark the first time we were aware of her being aware of her own disabilities.  She knew that people can write things down---the kids in her class write all the time.  And she knew that Tony wrote things on that paper to remind him to get them at the store.  So she got the notepad and then, boom, it hit her.  She couldn't write.  She had no idea how to put green candy on the list.  And that would be a sad moment for anyone.

Or I could do as I would like to do more often---see this as an opening, see it as a good thing.  She was making a cognitive breakthrough---getting what writing is all about.  That's a much cheerier way to look at it.   But it would be more cheery if I felt she was within any kind of reach of being able to write.  She has very few even prewriting skills.  Once in a while, she can make a J, or try at a circle or line, but that has taken years and years to get to, and it's pretty hit or miss.  I should, if I were being less of a negative person, think about technology---how she could use her iPad to make a list, how we could take a picture of the green candies and use them to start teaching more more iPad communication.  But she has shown huge resistance to any attempts at that.  Her calm, happy state lately has come about partly because of my realization about how much she gets stressed by my attempts to teach her---I'm going to write about that soon.  She is much more willing to learn at school, but even there, it's slow, slow going.

So I'll say honestly my main feeling today at her frustration was sadness, because she was sad, and because it seemed like she realized what she couldn't do.  Tony and I talked about how we had almost hoped that day would never come---the day when she realized she was different than other kids, and couldn't do the things other kids can do.  And it might not ever come fully, but today felt like a little bit of that knowledge had hit her, and it's hard to for me to see that, and I am sure, harder for Janey to feel it.