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Thursday, July 9, 2009


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!

Sunday, July 5, 2009

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.

Friday, July 3, 2009


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.