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.

Summer's almost over

I haven't written much this summer. It's been a tough summer in some ways I won't get into, but not terrible. I do have to say (but I've said this before and not done it) that I will NEVER have a whole summer without camp/work plans for the kids again. It's way too long. I think everyone is ready for school.

Janey has mostly been happy lately. Not as much crying as some times in her life. The boys think she is talking more interactively. I am not sure, but maybe. Much of her talking is about what video she wants to watch, and where she wants to watch it, or telling us she wants an M&M or chocolate milk, and where she wants them. She loves being around the boys most of the time, and a few times lately when we were all just sitting around doing not much (which I do think we do more of as a family than almost any families out there) it just struck me that she really seemed just like one of the family, which of course she is, but before she always seemed first like a baby, then like a toddler, then like an autistic sensitive preschooler, and these few times she just seemed like one of us hanging out. That was a good feeling.

I have been thinking a lot about if she doesn't "get better". I still have hope somehow this whole autism thing is a big mistake, and some day she will just decide to talk more and learn easily, and then we will all laugh over how everything thought she was autistic. But it might not happen. And it will be okay. She will be who is she, and we will figure out what she likes to do, what makes her happy, what she can do. She will live with Tony and me, and the boys will hopefully help out and watch her sometimes so we are not totally landlocked, and that will be it. And I will be glad she is verbal and beautiful and can walk and is healthy. That's me at my most positive. I am not always thinking that way.

Mania

One thing Janey does that I haven't seen mentioned in anything I've read about autism----she has manic spells. When she is in one, she talks non-stop while running back and forth around the house. It's when we hear the most talking, but it's a long monologue without any connection to much. She tells stories, sings whole songs, recites nursery rhymes, lists things, and just never stops. It's very, very odd to see. Last night she was in one. She started out talking about candlesticks, she is a little obsessed with Jack Jump Over the Candlestick. Tony put down a little candle for her (not lit of course and not in a stick!) and she jumped over it about a million times. She sang the entire patriotic sing-along the Pops did for the fourth, she talked about Ravenpaw a lot (Maryellen's cat that she is also obsessed with), she told Kipper stories, she jumped around crazily, on and on. She does more talking during one of the those times than she does the entire rest of the week. It makes me know the words are in there someplace, but just don't come out on demand.

I have started pointing my finger in rhythm to certain sentences she needs to use, like "I want to watch Maisy", with a point for each word. It seems to help her to say them.

A phrase she often adds to the end of sentences about things she wants is "to feel me better", for example, tonight she said "Daddy, I need a blanket to feel me better".

Everything I read says talking at all at age 4 with autism is a good sign. But her talking just really never seems to progress, it often goes backwards.

One encouraging time today---she wanted an M&M and I said "what color?" and she said right away, "Blue". So at least she understands the category of colors.

Getting tired so this is getting random!

Tale of a tantrum

Janey has so many tantrums and crying spells, they all blend together. So I thought I'd pick a random one and describe it. Tonight she asked to watch Kipper, one of her favorite videos. I had just turned off another video because she kept crying during it. I have decided to do that, to take her crying as communication she doesn't like something and tell her that---"Oh, you are crying, you must not like that video, I will turn it off for you". I gave her lots of attention and talked to her about things, and she calmed down and asked for Kipper. I put it on, and she watched it happily for a bit, then got to a certain part and went and asked Tony for "a green flashlight". She had been playing a lot today with her flashlight, which has a princess theme and sparkly things. We don't have any green one, so we assumed she meant her regular one, and gave it to her. That set things off---somehow that was very wrong. She immediately started screaming and stomping her feet hard, and it escalated to hysterical crying and biting of the couches, and pounding her feet so hard I am sure it hurt. We all stayed calm as we try to, and tried to ask her what was wrong. I tried "interpreting" a little and said "That wasn't what you wanted. You didn't like that flashlight. Something was wrong. You are very angry". I don't know if that does any good but I hope it gives her words. She cried for quite a while, and finally I lay down with her on my bed and told her it was bedtime. She seemed to relax some, then got up and asked Tony for a bottle. Now she is lying with her and hopefully on her way to sleeping.

We try to figure out what triggers these tantrums. Sometimes it's hunger, but she ate well today. Sometimes it's tiredness, or a stuffy nose, or our lack of understanding what she wants. I know it's frustrating for her, but it is for us, too. We all walk on eggshells so much of the time, and the boys so often just have to wait for what they need while we try to keep her sane. I am getting more and more tired. I am too old for an 1 year old, but that is what I have, essentially.

ABA---progress?

We are a couple months into ABA now. I am really not sure what it is or isn't doing. I love Christina, and Janey is more cooperative during the ABA than I ever thought she would be, but I don't know if much of it is carrying over. She is talking about the same amount as ever, I think, which isn't that much. She has started using more long phrases copied from videos, probably because she has gotten much more interested in videos. I do see that as progress a bit, as I think before she couldn't follow them enough to be interested. She uses the phrases appropriately often, such as coming up to me when she wasn't sure where I was and saying "I was looking all OVER for you!", or, when she was upset and wanted comforting, "I will read you a story" as Kipper does to a gosling that gets stuck in his house. But it's still so hard to get her to ask for things she wants, and she still almost never answers questions. Her basic knowledge is still so limited---I am not at all sure she really knows any colors or shapes, consistently anyway. She still has days when she cries all day pretty much, but also a lot of days where she is fairly happy. She has been asking to go to school a lot since school ended. I think she has absolutely no concept of time, and it's impossible to explain to her that it's summer and we will go to school again after the summer.

She often anticipates my answers and puts them in herself---like she will ask me for a cookie and then will say "We ran out of cookies". I think that is a a good thing---she is thinking about what someone might say back to her, but also it could just be repeating a phrase she often hears.

When she is happy she laughs non-stop. It's almost like the non-stop crying in reverse. It's less hard to hear, but still sometimes quite inappropriate.

She is so beautiful. It shouldn't matter to me, but it does. She is just stunningly gorgeous.

Crying off and on again

Janey went a while without the awful crying spells, but they are back a bit this week---just endless crying for no reason we can figure. She is waking up in the night again too. The first month with the ABA seemed really like a breakthrough---she was talking more and more social and happy, but the last week I hope is just a little break in the progress. She is repeating lines from videos more. I wish I could get a handle on her talking, understanding it. It's very odd. She says very little original when talking to people, but there are times when she is playing on her own or reading a book to herself that she talks tremendously well, with stream of consciousness long sentence and lots of expression. So there is a way she can do it, but just not socially or on demand. It is painful to watch her when she really wants to tell me something that can't be said with a set phrase. Often she will just resort to "hold my hand" and will take me where she wants to go. Today she said "I want to go to the ice cream store and get an ice cream cone". She meant Ron's, down the street, and we never get a cone, always a dish, but it was a good original question (I didn't have any cash so we didn't go, usually I do try to do what she asks if it's possible at all). I guess it bothers me as she gets bigger how it's so obvious she has some sort of disability. When she was littler it was acceptable not to answer people and to act a bit differently, but now it isn't. At the school, although I've certainly never told all the parents her diagnosis, they all seem to know she's autistic. That shouldn't bother me, but it does.

IEP, ABA

Janey had her IEP meeting today. I guess it went well---as always, everyone loves her, all her services are staying the same or getting a little more, etc. But it seems like she is making so little progress. Any progress they mentioned was so tiny---learning the routines a tiny bit more, sometimes talking a little bit more. They try hard to be positive but do have to mention things like how her mood can vary wildly and that has a huge effect on how she does each day, and how no-one can tell what will make her happy or sad. They all mention the music, and they are going to try to get her music therapy. I know they all love her, and that is great, I just wish she was learning more.

The ABA is better than I had thought it would be. Christina is just wonderful. She is really gifted. She is so firm but caring, and really expects a lot of Janey. But hearing her report was a little discouraging as things I thought she had pretty much mastered it still sounded like she had a long way to go on. I know it's all a slow process. But the years are going by. Janey is almost 5 now.

Janet, the speech therapist, noted all the things she sometimes does well saying---lots of pronouns, plurals, vowel tenses, etc, when she is in the mood. But when she isn't, she can be basically mute.

I wish I understood her. Sometimes I think I am starting to, but then I am not. Tonight when she was upset, she said crying "I get sad. I get tired. I get angry. I get hurt. I get jealous" I guess that covers it.