Follow-up

I was thinking about my post today while playing with Janey tonight. We were playing with her Ni-Hao Kailin doll---silly games like having the doll sneak up on her, the doll dance on her, etc. She was very, very happy. Then I had an inspiration---have the doll "talk" to her and ask her questions. I had the doll ask "How old are you?"---something she will occasionally answer. But not tonight. So I tried being persistent, pretending the doll didn't want to play unless she said how old she was. And I saw something I've seen so many other times---the light go out of Janey's eyes. We had been connecting, having fun, and in trying to teach, I put pressure on her. She stopped playing at all, got her faraway "autistic" look, and then asked for a video. Whey do I do that? I guess it's because I still in some way hope that she will not be retarded. I hear about how important the early years are, and I feel like I'm missing some vital chances. I need to listen to my own words---if we are having fun, connecting, that's the kind of learning she needs from me. I need to keep her out of the closed-down zone as much as I can. That is more important than reviewing facts with her. But I can talk a good talk, but not always walk a good walk.

Retardation

That word, retardation, and the related one, retarded, are not well liked these days. Lately, though, I've been using them more, and trying to reclaim them as acceptable. Why? Because they say something clearly that seems to be like the Voldemort of special needs talk---it that can not be spoken. Autism is fine, but people often say to me "She's autistic, but she's very bright, right? She's probably going to be a professor or a musician or something? She's not...slow...is she?" Well, I can't predict the future, but I can say as of right now, Janey is retarded. It's not a evil word. It means she is behind intellectually. I think at one point it was probably the politically correct way to say it---it meant she might catch up some day, she's just slower. But that's not how it ended up being used, and when I say it, I mean it as it's usually thought to mean. I don't think Janey is ever going to catch up. I've never been told her IQ outright---she's been tested several times during studies, but they generally say it was hard to complete the test, or her non-cooperative nature makes the results hard to say, etc. But I know if they did say them, they would be very low. She is functioning in most ways about like an 18 month old. She talks a little, she understands simple commands, she knows familiar people, etc. But she can't consistantly identify any shape, color, letter, number, word, she can't understand concepts like "yesterday" or "Christmas" or "surprised" or "farm". At school and at home, we have been working on those basic concepts for 4 years at least. She hasn't learned them. She might someday, but I am unsure.

So why do I say all this? To put her down, to be depressing? Not at all. I saw it because I prefer to work with the truth. Janey being retarded doesn't lessen her worth as a person, doesn't make me love her less, doesn't make me try less to help her. On the contrary, if I know what can be reasonably expected, I will work all the harder to make sure she accomplishes that. If I know that it's unreasonable to expect her to get concepts like "wait a minute!" I will find another way to get that point across. I won't frustrate her with workbooks that are far beyond her. I won't ask her questions she just can't answer. I will find a way to encourage her strengths---her singing, her love of rhyme and poetry, her dancing. I will love the real Janey, not my dream of a different Janey.

Frustrating

Echolalia is what is frustrating me lately. Janey is a master of it. About 3/4ths of the time, when we talk to her, her reply is a full or partial echo of what we said. Example from this morning---Me: "Do you want some bread?" Janey"Do you want some bread?" Me: "Yes or No, do you want bread?" Janey "Yes or No" Me: "Which one, yes or no?" Janey "which one, yes or no?" And on and on and on. I've tried all kinds of strategies---just presenting her with actual samples of the choice (hard to do with non-concrete or larger things), putting out my hands and moving one to represent yes and one for no so she can just pick, not answering at first but just waiting until she gives a choice---lots of strategies that don't work. Other times, she answers questions that involve two choices with "YES!"---"Do you want to have a bath first or brush your teeth first?" Janey---"YES!" or sometimes "No!". After a while, I give in and use my usual rule of thumb, that she is doing the best she can to communicate, and just try to figure out the answer, or give her the bread or the bath or whatever and see how she reacts.

The other frustrating thing lately---snow days and bad weather. It's been a tough winter all over, I know. It's really hard for Janey to not have a regular school schedule. She hates being home---she is bored to death. I think of about 20 activities we could try, none of which interest her for more than a minute or two, after which she starts crying, or demanding a video, which then after about 5 minutes she wants to change. I've been trying a new rule---if she is watching a video and starts to cry, I say "This video isn't making you happy" and turn it off, and don't put on another one. I can't stand videos in general. But they often seem like the only thing Janey does like, and one of the few things that teach her easily. About half of the non-direct echolalia talk Janey has is delayed echolalia, from videos. But it's not random, it often is very well used, and relevant to the situation and with vocabulary that at times gets integrated into her rare totally non-echolalia talk.

In writing all this, I am strongly keeping in mind my thankfulness that except for a few days, we haven't had much crying all day time. Wonderful!

Always learning

I read a book to review it for Amazon recently about ADD. I don't have any children with ADD, but I still felt like I learned from it. Janey is restless---she has a much higher need for physical activity and novel happenings than the boys do. I think that's different than some kids with autism, or at least some kids with Aspergers. Vacation week after Christmas was very tough. The boys wanted to do nothing---to stay home, play games, play the guitar, read, etc. There had been a big snowstorm and I certainly wasn't inclined to go out a lot either. But Janey wasn't at all happy. I tried to keep her entertained, but it wasn't until the end of the vacation when Tony was home that she was happy. I've always known the two of them are a lot alike, not in autism, but in personality---they both need to be moving, need to be going places and doing things. He took her over and over to the store and she was thrilled, and much happier once she was home. I need to try harder to keep her engaged in that way when I'm home with her, or find programs for her to keep busy (much, much, much easier said than done)

I also thought about how I handled something last night. Janey, to put this in a non-graphic way, used the floor as a toilet and then used what was on the floor as Play-Doh for the hands and feet. This was all within a minute, as she was in the next room watching a video and I was on the computer working. She came over to me and said "I need a wipe". It was quite apparent she did by that time. So things flung into high gear. I screamed for Tony, grabbed Janey before she could decorate the house, carried her to the bath, all the time saying "WE NEVER DO THAT! WE TELL MAMA WHEN WE NEED A CHANGE, OR WE USE THE POTTY!" There was all kinds of excitment, and Janey seemed to love it. She was laughing happily, while I uselessly said "It's not funny. It's not at all funny". And I thought about the book I'd read, how when you really crave action, you don't care if it's brought on by negative actions and attention. I wonder how I could have handled it differently. Perhaps a very calm, boring approach would be best. Pick her up calming, give her a wordless bath, dress her, then have her "clean" where we have already cleaned. Make it dull and no fun at all. But that kind of goes against instinct, and my usual feeling is that parenting ideas that go against instinct have a flaw to them. It's such a never-ending challenge with Janey.

An unrelated story that made me happy---yesterday Janey was determined she was going to wear her beloved My Little Pony raincoat to school. It was too cold for it, and not raining, which I pointed out to her. She went and stood by the window and then quoted a Kipper line "LOOK at all that rain! It's POURING out". Actually it was sunny, but I loved it---it was one of the first times I've ever seen her try to trick me, or else just talk wistfully about what she wished. Nice.