"How was school today?"

Shortly after Janey started K0, which here in Boston is what they call public preschool for 3 year olds, I asked her one day after picking her up how school was.  She said "We did music with Mr. Tim.  We sang a snowflake song"  I was a little doubtful, as it seemed early in the year for songs about snowflakes, but I asked her to sing it and she sang a little.  That's all I remember about that conversation.  I wish I remembered more.  It was the only time Janey was to ever tell me about her day in school.

Writing that, I'm crying a bit.  I don't like that much to think about Janey pre-regression.  Her regression was late and severe.  It started a bit before she started K0, a class she was in not at all on an IEP or in special ed, but that she got into because Freddy was at that time in 5th grade in the same school.  The first day of school, I mentioned to the special ed teacher in the classroom (as it was an inclusion school and each room had both a regular ed teacher and a special ed teacher) that I was starting to have some concerns about Janey, and I asked him to let me know if he saw anything that made him share those concerns as he got to know her.  It was only about a month into the year when he said he did, and it was a couple months after that that Janey was formally diagnosed as autistic.  During those months, she lost nearly all her speech.  It has never returned to the level it was when she was two.

I am very grateful that Janey does speak verbally at all.  I know it's something never to take for granted, something that so many mothers of children like Janey would love to hear, to hear a single word ever from their child.

It's still hard, though, to think about when Janey talked more.  Usually, I just don't.  I don't watch, ever, the few videos we took of her talking.  Even though I don't watch them, I wish we had taken more.  You don't think about that.  You don't think that the chattering of your two year old might be something you never really hear again.

During our cross country trip, during which Janey turned three, just before starting the K0 class, we stopped at the Custer National Battlefield in South Dakota.  In the gift shop, Janey saw a family with a girl about her age.  She walked up to them and said "Hi!  I'm Beautiful Janey!"  We still laugh often at that.  She had been hearing from relatives we visited on our trip all the time how beautiful she was, and I guess she'd internalized it pretty well.  I remember that moment so vividly.  It was another last, the last time I remember her ever introducing herself.

Another time, shortly before the trip, Janey started singing "Elmo's got a gun..."  I asked her where she had heard such a thing, and she said "Freddy showed it to me, on the internet"  There was a Sesame Street parody video featuring that song, and Freddy owned up.  That was the one and only time ever she told on her brother.

For a long time, I thought Janey's speech would some day come back to where it was when she was two.  It ebbs and flows, but it's never come close to that level.  Sometimes I read old blog entries and realize that it's not as good now as it was when she was around 6 or 7.

Janey knows a lot of words, words that seem stored and that come out only on rare occasions.  A few days ago, I was reading her "Go Dog Go", her favorite book, and for some reason I asked her what the dogs on the boat on one page were playing, and she said easily and quickly "A banjo" which was completely correct.  I had no idea she knew that word, or other words she's used in that same context, to answer a direct identification question---"raccoon", "drawbridge", "crab", "volcano"---to name a few I can think of.  But in daily life, she uses mostly one sentence, modified slightly for what she wants..."I want cheese.  I want soda.  I want snuggle on Mama's bed"

Every day, every single day, when Janey gets off the bus, I ask "How was school today?" Every day, she doesn't answer.  I don't know if she ever will again.  And I wish, like the old song, I could have saved time in a bottle, and could hear again that one time that she did tell me how her day was.  I wish that a lot.

Weekly Work-ons

The last few weeks, I've been posting on the fridge a list of things for us to work on with Janey. We have a color, number, letter and emotion of the week, a command of the week (for example, this week is "be patient"), a body part of the week and a verb of the week. I'm hoping it gives everyone ideas for something to work on Janey with when they have a minute. I've noticed some good results---I've been saying "be patient!" a lot and Janey is starting to mimic it back appropriately, and she seems to like the body part---this week is "leg". I might add a few items---like an animal of the week, a opposite of the week, etc.

Something I think would be extremely helpful, and something I've searched for without success, is a list of skills and ideas to work on with Janey---something like an autism curriculum. Regular preschool curriculums don't work. They assume kids learn just by absorbing things around them---they do project based learning, books with the concepts to learn mentioned, self directed exploring of toys, etc. Janey needs to be specifically taught things. She isn't going to learn just by picking up things here and there. So I would love lists---here's the words she should understand, here's the animals a 6 year old should know, here's some verbs all kids need to learn. I try to make up my own lists, but it's not easy to do. It's something I might try to do someday, and make a web page about, just by winging it, but I am sure there are people that really know how to do that kind of thing. This is all of course to compliment what she learns at school---I'm not her primary teacher, I'm her mother. I don't want to be her primary teacher---if I did, I would homeschool her. But she needs more practice and reinforcement than typical kids, and I want to do a good job with that.

I think this is an area where all the focus on "autism recovery" and similar concepts takes away from educating the kids right here in front of us with autism. I could find a million pages on the web about how to "cure" Janey, but very few about how to work with the "uncured" Janey. What specifically does she need to learn? How can I best teach her? That is what I want to know.

Inclusion

Janey is in an inclusion classroom. She was there originally as one of what they call community members---kids without any IEP or disabilities that act as models to the kids with them. Now she is one of the kids on the other side. I love inclusion. My sons both went to the same school, and I think everyone involved benefits. I love seeing how the other kids love Janey. She is mobbed as she arrives. I wonder sometimes what she gives back. She doesn't talk much, or join into their games. But there is always someone holding her hand, someone wanting to play with her. The teachers tell me that all the parents they have spoken to mention Janey as a friend. It makes me feel like she is part of a group---and I feel very lucky that she is at the school she is. When she was diagnosed this past Saturday, we were told that we should put her in another school---that inclusion doesn't work well for kids with autism---they need more intensive services. I am inclined to ignore this advice, but like everything else lately, I am struggling with self-doubt. Is Janey missing out? Is she some kind of classroom pet---everyone loves her because she doesn't demand much? Is inclusion just cheaper for the school district? When I see her at school, I am sure, but when I am home, I'm not sure. Yet another tough decision the next few months has in store for me.