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Tuesday, October 26, 2010


I know a lot of kids with autism have food issues. I wouldn't say Janey has issues, because she's always eaten pretty well and with a lot of variety, but she likes strange things to eat. She often asks for condiments wanting to eat them on their own---ketchup, mayonaisse, things like that. She also loves garlic and onions. She will eat a peeled onion like an apple, and she sneaks garlic cloves out of the fridge any time we leave it un-bungee-corded (which we had to do because of her random fridge raidings) and eats them, papery outer part and all. But she also likes some regular kid things a lot---pizza, chicken nuggets, french fries, juice. She loves chicken, in almost any form---she'll go crazy at a Chinese or Indian buffet. She adores peanuts more than almost anything. I can't think of a lot of foods she won't eat----at one time or another she's eaten almost everything.

One of the common side effects of the medication she is taking is increased eating and weight. I have seen that Janey is hungry all the time lately. She might have gained a little weight, but not that much. Part of that is that because Tony is diabetic, we generally don't have any desserts or sweets in the house. You can't gain that much on apples (although don't ask me why I'm not thin!) and part of that is just what she likes to eat---you can eat a lot of onions without gaining much. The rare time we do get things like cookies, she thinks about them a lot, although for her, cookies pretty much means Oreos.

Yesterday after school she wanted peanuts for the car, so we stopped at the CVS to get some. She spotted a huge bag of Doritos and wanted that instead. I said no, but she found a smaller bag near the register and I gave in. She eat it all on the way home. I have to be careful to make sure the foods she has around the house aren't like that, because I can easily see her getting a little obsessed with junk food. Or food in general. Part of that probably has nothing to do with her autism---she's a lot like the rest of the family when it comes to food. We like to eat, to talk about eating, to think about eating, to plan to eat...we enjoy food. We all get craving for various weird things, and so we are pretty accepting of that in people. It makes me think how what aspects of autism upset people most probably has a lot to do with which are more foreign to a particular family. If you are a family of huge extroverts, the lack of true social skills might be the thing, if you are very invested in your children being academic or "smart", the retardation might be it, if you are concerned with how your children appear in public to others, it might be the weird things they do like sleeve chewing or flapping hands. If any of those areas aren't a big thing for you, then that part of autism probably doesn't bother you a lot, and I am thinking that's how it is with food. Janey's food likes might be a huge issue in another family, but in ours, it's not.

Wednesday, October 20, 2010

Language notes

Janey's language, when I can remove myself from feeling upset over it, can really be fascinating. I bet someone could do a whole study of how she talks for a graduate thesis, but that just might be a mother's perspective. It seems that interesting to me, though. It's very hard to describe to people. What I usually say to people who don't need the whole story is "She doesn't talk much". And that's true---she is often just silent. But she CAN talk, and does talk. A great deal of it is echolalia---repeating what she's just heard, but usually for meaning---for example, I'll say "Do you want some juice?" and she'll say "Do you want some juice!" to say yes. Some of it is random things she remembers, like lines from videos or parts of songs or nursery rhymes. It's her original speech that's the hardest to get a grasp of. Most of it is asking for things, and some of that is straightforward "I want cheese. I want water. I want Maisy on" But then there's the rare kind, when she observes something and talks about it. That's where I think there's word retrivial issues. On the way to school the other day we saw a big building under construction. Part of it had a temporary grid over it that hadn't even been there before. Janey noticed it, and said over and over "Cage! Cage!" It did look like a cage. It must have gotten her attention enough to want to share, which is unusual, but she didn't know how to really explain. If I hadn't happened to notice the building, I would have had no idea what she was talking about, and I bet that happens a lot---she says words that seem random, and I just think "What is the world is she talking about?" but she's really trying to tell me something. I think also if she gets the wrong word in her head to start with, it stays there. For example, she always calls knives "cutters". She talks about them a lot because she often wants me to cut her a piece of cheese, and she'll say "need a cutter". I always say knife back to her, but cutter seems to be implanted pretty hard in her head.

She is showing that she knows a lot more names than we had thought. She's finally saying "hi" to people, and often by name. Usually there's a little autistic twist---yesterday she said "Say good morning Ms. Thornton" to her teacher. But she knows the names. Or some of them---she thinks all the cats are named Tommy, and often she will call William Freddy, or use Freddy as shorthand for "brother", although she certainly knows William's name. Once in a while she still calls me "Daddy".

I'd say most of what she says is still single words. It's like she has to pay for each word, and so keeps things to a minimum---"Apple! Olivia! Snuggle! Outside!" and we know what she means. I probably should pretend not to, or insist on a full sentence, but for me, communication is the key. If she is communicating, I don't want to put up stop signs or act like it's not good enough for me. She is very easily frustrated. Times when I have said something like "Say 'I want an apple, please'" and she's tried a few times, she will break down entirely, cry, and I'll lose her for an hour. I guess there would be a school of thought that I should do that anyway, and after a while she'd learn, but in my mind, that's a precious hour lost and also sending her a message "I know what you are saying, but it's not good enough for me. It's not enough you're trying to communicate when it's so hard for you---you have to do it JUST RIGHT" I also always use what I did with the boys as a template. I "spoiled" them much more than Janey even---I know I did a lot for them that they could have done for themselves, but now they both are very good communicators and excellent students, and very independent. I would never have insisted they get their requests just right before helping them, and they COULD have done that, so why should I do that with Janey, when it's so hard for her? My goal is for her to feel loved, cared for and understood.

Monday, October 11, 2010

No news good news?

I haven't written in a bit, and mostly, that has been because things have been going pretty smoothly, which shouldn't keep me from writing! I know I should write about the better times too! Janey has been very happy so far at school this year. She seems to fit in very well with her new class. I loved the kids in her old class, but I think they saw so much of the tough Janey times that they were a little wary of her, and also tended to treat her like a younger sibling. These new kids are mostly a little younger than HER, and haven't known her right along, and Janey is actually making friends! She's always had kids be friends to HER, but she is being a friend back! She actually walks off down the hall to her class with other little girls, and plays with them from all reports, and even says their names when prompted, and sometimes when not, at home. It thrills me. She is talking more about school, or more, answering questions about school. She will say what room number she is in, and say "Ms. Allie" when we ask her teacher's name (Ms. Allie is the para that works with her the most, and she is so wonderful with Janey). Ms. Samuels, the regular ed. teacher, says Janey has asked her to play Miss Mary Mack all her on her own (another wonderful sweet person in the room) and the sub. special ed teacher seems great. It's all coming together so well. Ms. Janet, the speech therapist, is just thrilled with what she sees Janey doing this year. It's great to see the happiness she brings to the people she works with, as I think they can see the fruits of a lot of years of frustrating and sometimes non-rewarding word. And at home, it's so exciting to hear actual sentences now and then. Today, when Tony didn't jump up to fill her request, she said "Daddy, I WANT some PASTA!" Later, when the phone rang, she said "That would be the phone" I think she got the wording from Kipper. When I tried to put some pants on her she doesn't like, she said "NO, I don't want the pants!" All three just examples I can remember from today.

Of course, all is not perfect. This weekend, along with the great talking, we were seeing a return of the tantrums and some crying. It made us realize how smooth things have been for a few months. We went yesterday to dinner at my friend Christine's house, and Janey usually loves it there and is well behaved, but last night she was not. She kept demanding things, crying, and at one point threw a toy hard across the room. I am coming down harder on her for things---making her pick up the toy, put it away and say "sorry" to Christine. I think now that I am feeling she is understanding things a bit more, I need to work on the things I have sort of neglected. We for a few years now have gotten her pretty much what she asked for, in terms of food or drink. This is because she talks so little that we wanted her to learn that asking for something verbally is worth it---that it actually has a result. But I think she understands that now, and I am more often saying "Not right now" or "no". Maybe this is bringing on the increase in tough behavior. I am also working more on trying to get her to tell me why she is crying. Mostly I just try to get her to say "angry" or "sad". Last night at dinner I took her outside and asked her if she was sad, and she said "ANGRY" and then added on her own "Angry at MAMA". I asked her why, and she actually answered, and said "NAILS!" I don't know what she meant, though, I hadn't cut her nails recently and I don't know what other nails she was talking about, but it was something to hear anyway.

She is looking older and getting taller. Often now people who don't know her ask her questions like you would ask any six year old. I am never sure what to do. Sometimes I answer for her, sometimes I try to repeat the question in a way she will understand (although it's a shot in the dark to hope she answers at all) and sometimes after a few questions I say "She is autistic and doesn't talk much, but you never know!" just to not make them feel silly for having asked or anything. Sometimes it's a little sad thinking that they are asking perfectly normal questions to ask a child her age, and to me they seem impossibly difficult---like someone asked her yesterday "Do you have school tomorrow?". She has no clue what days are school days and what days aren't, to say nothing of holidays. Or they ask what she likes to do at school, or if she likes school. I look at the 1st graders who she used to be in class with, and it just astonishes me that they can chat away about all kinds of things, and are starting to read and write and add. Even though I had two kids who did those things at that age---it seems seems almost like a miracle that any child can. But we can celebrate her little steps.