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Friday, September 25, 2009

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?

Tuesday, September 15, 2009


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.

Monday, September 14, 2009

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.

Sunday, September 13, 2009

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.

Sunday, September 6, 2009

Summer is STILL almost over

It seems sometimes like summer will last forever, which in my mind is NOT a good thing. I really have never, ever liked summer, and I still don't. I don't like the heat, the unstructured time, the isolation it seems to bring, any of it. I am always happier when things are in a routine.

William started high school on Thursday, and Freddy will start Boston Latin School (7th grade) this coming Thursday, and Janey will finally start kindergarten on the 14th. I hope the year goes well. She is in the class I wanted her to be in. More and more I can't really picture her fitting well into a classroom routine, since K2 will be a bit more structured than K1 or K0. Maybe she will surprise me. I worry about her biting at school, or crying until they don't know what to do and call me, or wetting through her pull-up, or all sorts of things. I hope she learns and has fun. I am very much looking forward to days to myself, getting more work done, etc.

Janey used the regular potty today, not to pee of course. We have more warning of the other bathroom need. Tony got her a insert seat and she used that well, but of course we put her on the potty, it wasn't like an independent use.

She has starting eating all her clothes, like William used to a long time ago. Her tops are full of holes.

She has gotten into Barney now, and likes him more than Kipper. I am already tired of the few videos we can find from when the boys were little. I guess it fits into her likes---lots of singing and dancing.