Planning skills

Janey loves whipped cream, and we sometimes give her a little mug full (like an espresso cup). Three times today, she got the whipped cream out of the fridge, found a little mug and found a spoon, and brought them all to me. I was impressed---it seems to me like that requires fairly complex thinking and planning ahead, which I wouldn't have guessed she had as much of as that shows.

Sunday was very exciting, as Janey ASKED to use the potty, sat on it for quite a while, and actully finally did pee in it! First time EVER she has peed in a potty. And it was more impressive it was her idea. Maybe I should have followed my instincts and let potty training be more driven by her. However, I certainly wouldn't call her ANYWHERE close to potty trained, but it's a step in the right direction.

We never know where she thinks these things up

When Janey does speak in a clear sentence, it's often something we have no idea where she gets. This morning she said "Don't stick your thumb in the ice cream---it's NOT funny!" She also said "I want to go on the merry-go-round". The other day she said "I can't see the far-away things. Please help me" These sentences comes out of nowhere and are in such contrasts to her usual talking, which is often just sounds---lately she likes GaGaGa. Or how she talks when we ask her a question and insist on an answer and she takes the rare route and does answer---often then it sounds garbled and like someone with speech articulation problems, which she really doesn't have, at least usually. Her talking is so mysterious. And then there's the snatches of songs---often songs I've played in the car. Last night, over and over she sang "Making lazy circles in the sky" from Oklahoma. Her taste in music is very specific. She likes show tunes usually, but not super emotional ones, she likes songs with a clear voice and a clear beat, she likes dancing type songs but NOT disco---she can spot disco a mile away. Sometimes I think she likes a song so much she just can't take it. Last night I was playing "On the Road Again" and she was thrilled, clapping and happy and smiling, but then started to scream. I turned it off and she was saying "On the Road again ON! On the Road again OFF!" I figured out she liked it but it was just too much excitement right then. She is interesting to figure out, but when you live with her all the time, it goes from the theoretical to the practical and gets very tiring.

School not bad

Janey is doing fairly well starting kindergarten, at least in terms of not crying all day. Everyone seems pleased with how happy she is at school. Tony and I went to the open house last night and her teachers went over the class schedule. It sounded great---an amazing amount of terrific learning centers, lots of music, etc, but both of us were sitting there thinking---great, but how much of this is Janey going to understand? Very little of it. But she actually is out of the room a lot, getting speech, OT, PT, ABA and soon music therapy. So she gets the regular class situation but lots of extra help too. The question is, does she learn anything? I have to admit to myself that her speech is not improving---I would say it's worse than 6 months ago---very few sentences lately, mostly one or two words. Some things are better, what I would call self-help skills---she jumps into her car seat easily, she is so good at using her hands to play with things, figure things out. Her eating is pretty good. But talking...not so much. It is discouraging. Sometimes it would almost be easier if she had never talked much. But there are those long sentences we've heard at times, and complex ones. I know when she was 2, she said something along the lines of "I was scared by that Sesame Street show on the internet Freddy showed me" (Elmo's got a gun parody) It kills me to think of that. How did I let her slip along without realizing it? Was it our long trip? Did something physical happen? Does she have that Landau-Klippel syndrome even though no seizures showed up on the EEG? What is wrong?

Worrying

I didn't sleep well last night, just worrying about things. Janey got mixed reviews on her first day. The special ed teacher said things went well, some crying, but not severe. The ABA woman wrote that Janey had a rough time, though, lots of tantrums and screaming and biting her clothes. She seemed spacy when she got home. That is what Tony and I were noticing lately---she seems more out of it than usual. I couldn't sleep and finally woke tony up and we had a good talk about all of it, about how we are going to try even harder to engage her. It's easy to say we will just put everything else aside, but then there's the little matter of having 2 other kids who need us too. Freddy is just starting at Latin and the homework is starting to pile in, and William has his usual anxieties and oddities. The housework is building up, and our finances are tough---back to school was VERY expensive this year---the school supplies the boys needed were not cheap. Yesterday I saw in Janey's class almost everyone is wearing a uniform (blue or white top, blue or khaki pants) and I just don't have that for Janey. She is actually low on clothes, to my amazement. I had to finally last night make a Lands' End order of some different blue tops. She doesn't need to stand out even more than she already does. But she eats her shirts now---chews holes into them within minutes. I can't afford new clothes every day. It just all starts to close in after a while.

Off to kindergarten

It's the big day, the day I must admit I've been waiting for since December 26, 2003 (when we realized we would have a 3rd child!)---all three kids are in school all day! The morning went fairly smoothly. Janey had some cranky and upset moments this morning, but that's not rare. When we were getting in the car, she said "I want to go to Christine's house", a place she loves to go and I guess something she wanted to do more than go to kindergarten. I said "Are you a little nervous?" and she said "A little nervous, Janey". Once she saw the school, she seemed happy, though. We met 3 kids who are new (weren't there for K0 or K1) who will be in her class (all seemed regular ed) and talked to lots of old friend teachers. This marks the start of my 10th year with a child at the O'Hearn (except for now it's the Henderson). It was great to be able to drop Janey off with no qualms. We barely even stayed in the classroom---I thought I'd make room for new parents who didn't feel as confident as I did. I am excited and nervous for Janey. I know she will chew her shirt, get wet or dirty from her diaper, freak out about things, etc...but I know it will all be handled by the school, and that she's in a place she is loved and cared for.

Other autism blogs

I was reading a few other autism blogs, and it was depressing. So so so many kids that are diagnosed with autism seem so much higher functioning than Janey. It almost makes me mad---I want to say "That isn't autism! That's just a quirky kid! I HAVE one of those---it's nothing like having a kid that REALLY has autism!" But of course that is mean and unnecessary. I just felt upset reading about kids that can read at 5 and have interesting insights and so on. Janey doesn't have any interesting insights. I really wonder if she will ever read, or even learn her letters. Her latest hobby is spreading the content of her diapers on things. She is talking mostly in Kipper dialogue. She is not getting better.

The other thing that bugged me is how literary the blogs all were, like they were a contest to seem intellectual. I can write as prettily as the best person, but that isn't what I see this being for, but I have to remind myself---that's just me, and I am writing this FOR MYSELF mainly. I just wish I could find someone like myself, with a girl with autism who is fairly low functioning. Or a boy. Someone who hasn't bought totally into any one philosophy and is skeptical of all treatments, someone who knows the difference between mild Aspergers that might turn into no Aspergers (which was my son William's story) and hard core autism.

This is a nasty post. But it's how I'm feeling right now.

Kindergarten tomorrow

Janey starts kindergarten tomorrow. We went to an open house on Thursday and as always after spending time at the O'Hearn (now the Henderson), I felt very happy. Everyone at all who is involved with Janey came in Room 5 to see us, and to welcome Janey back, and to talk about their plans for this year. I couldn't ask for more in that way. It's one thing that's good about inclusion. If she was in a class of all autistic kids, she would not stand out as much and not get as much attention and positive interactions. Of course, she would be getting more specialized education, so it's so hard to know what is best. But I love the feeling of knowing that she is with people who adore her all day. In my gut, I feel like that is the most I could want. I know there are at least 6 or 7 people there who love her like a daughter. I like her new room. Most of the kids from K1 I wanted to have with her are there, and a few that I didn't, aren't. It's just a nice room. She will have Ms. Samuels as her regular ed teacher, who Freddy had too and who I really like, and Ms. Elmaus as her special ed teacher, who I don't know well but I met and liked a lot too. Still, I have so many worries. I hope she learns. She hasn't learned much yet, in terms of things concrete that you could test for, like colors and numbers and letters and shapes.

She did some good talking today. She wanted us to play catch with her cat, a cotton knit cat we tie up into a ball and throw, so she said "I want to play catch with my kitty, Janey", a nice long sentence. She almost always adds Janey at the end, sort of her own tag to let us know the sentence is about her.

The sudden rages are getting more and scarier, though. She will be perfectly happy, and then something happens that isn't what she wanted or expected, and she screams, bits things, cries---all this happens within a minute. I think it will help if she can tell us what is wrong, although we might not always be able to fix it.

I am glad for little things. For years, she would bring me yohgert to have me feed her, and I would say "I need a spoon, get a spoon" and of course she wouldn't. Just the last few weeks, she brings the yohgert WITH a spoon. It finally clicked.