Eating

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.

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.

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.

Start of school

Janey started school a week ago. For the most part, it's been good. I hated leaving her the first day---she had such a "where am I? What's going on?" look on her face. But we got good reports that day and the next few. The special ed teacher is out on maternity leave, but the long term sub seems great. Janey is really in love with the aide (who is more like a teacher in terms of education and experience), and she seems to be making friends with the new students.

However, on Thursday we got a call at noon she had a high fever. About 2 weeks ago, the same thing happened---she spiked quite a high fever off and on for a few days, we took her to the dr., no strep, nothing wrong. I took her again last Friday, and again, nothing wrong but the fever, which at that point was not even there either. My sister used to do the same thing---just get a high fever with nothing else. I hope she's okay, and I hope she doesn't have to miss any more school. Today was like starting again. She had the same look on her face---Why am I here? What's going on? Routines seem very hard for her to grasp. I think most kids with autism like routines and schedules, but Janey doesn't seem to, or doesn't get them, anyway. She seems always very surprised by what comes next, even if we've done it the same way for years. She likes new things. I don't get any sense that picture schedules or verbal prompts about what comes next mean a thing to her.

On another note---my older son William turns 16 today. I am so proud of him. He was a preemie, and when he was younger, diagnosed with Aspergers. I don't think he ever really had it---I think it just took him a while to outgrow the preemie-ness. He's been tested several times in the past 4 or 5 years, and no longer meets the "qualifications" of Aspergers, and he hasn't been on an IEP for 5 years now. He's quirky---all my favorite people in the world are quirky. He's one of the main reasons I don't believe in miracle cures. He could be held up as one---at age 2, he was diagnosed as (but we weren't told) having classic autism. But he didn't, and aside from loving him and using school services and just waiting it out, we did nothing extreme---no special diets or therapies or so on. And in knowing him and knowing Janey---there is no comparison. You can be with Janey for half a minute and you know something is up. She never passes for "normal"---he always could, because, well, aside for some oddities, he was. I'm sure we have some kind of gene which pre-disposes us to traits that fall along a long spectrum, from slightly socially awkward to full blown autism. Or, in Freddy's case, to being extremely at ease socially and quite a leader. Anyway, I am so thrilled with the man William is becoming. He's very talented musically, he is tall and handsome and interesting and bright. He is more devoted to the study of Latin and history than almost anyone. He's fantastic, and I am so lucky to be his mother (as I am so lucky to be Freddy's mother and Janey's mother---I am lucky all around)

Not proud of myself

Sometimes I don't like how I feel my personality has changed since facing autism with Janey. Today was an example. I was in a Borders book store, getting books Freddy needed for school. Tony wanted to look around a little, so I took Janey to the kids section. There was a very pregnant lady there with twin toddlers, about 2, a girl and a boy. The girl was extremely advanced (or very short) and was eager to show Janey a book she was holding. Janey of course showed no interest. The girl toddled over and got another book just the same to show Janey. Janey took it, but then decided she wanted the little girl's copy, and tried to grab it. I of course stopped her. The mother had a look on her face like "what a little brat, and dumb to boot" She said in a fake cheery voice "Let's say goodbye to this book area---not everyone likes to share" I felt as I always do like grabbing her and telling her all about Janey. The little girl didn't want to leave---she wanted to interact with Janey. I could almost see the mother thinking "why is she wasting her time with that girl?" Finally she told them they had leave. The boy had no said a word this whole time. I went to pay, and she was behind me in line. All of a sudden, things went to hell with her kids. The boy just started screaming, a wordless scream. I thought instantly---autism. It had ever crossed my mind just looking at him earlier. Of course, who knows, but I think you develop a sense for that. The mother talked to both kids in a very "I've read all the latest parenting books" way "Can you tell me what's wrong? I need you to be quiet. We are in line for a few minutes. Oh, look at that book there!"---you could hear her thinking "Use 'I' statements! Give a time limit. Distract!" None of which work well with you are faced with an autistic meltdown. And I thought to myself---I need to let her go ahead of me in line. There is no need for her to wait any longer. She is in a tough situation, regardless of how she acted earlier. She has a long road ahead of her, whether she knows it or not. But until the very last minute, I felt...smug. I felt glad she was having a hard time. I felt mean things. Finally, I told myself to be a little Biblical about this. Do unto others, and all. So when it was my turn to check out, I waved her in front of me. She was very grateful, and, I hope, a little chagrined about her behavior earlier. I don't know that last part. I still felt angry, but I tried to tell myself---no-one understands, until they do. I don't want to feel mean and angry because people don't understand Janey, because people think that textbook parenting can work on all kids, because people live in their own self-satisfied worlds a lot of the time. I want to be a kind, understanding person. Is that going to be another thing lost to the realities of autism?

Toilet Training..of a sort

I recently got asked to review a book for Amazon about toilet training autistic children. I'm only half way through, but it got me thinking I should really give the whole toilet training bit another whirl. Janey is in no way at all trained. She has never ONCE used the potty for urine (or once, at school, but I didn't see that and it was years ago). She seems to be to have next to no awareness of when she needs to urinate. She can hold it for half a day, so I think she must have some control, but she doesn't seem to know how to let it go at will. I gave up for a while after a few years of no success. I don't mean I was trying hard every second of that time, but at least as hard as I tried when training the boys, and they were both trained fairly easily. But I know at some point, it just has to happen. So I decided to put her in underwear during the day all the time, and take her to the bathroom every half hour or so. We've been doing that for a couple days now. Still zero success. She wets herself about once a day---she's dry the rest of the time, and she will sit on the potty for a minute or two fairly happily, but never, ever actually pees there. I'm partly motivated by how much pullups cost, and how much she seems to hate them now---we were running through them like crazy as she took them off constantly, whether they were wet or not. That's a lot cheaper with clothes, and I don't mind washing them and cleaning up. So I guess it's worth a try.

The other full court press I've been trying is teaching Janey to talk about feelings. That one is going a little better. When she cries or is upset, I right away rush over, say something like "Oh, no!" and then say "Are you sad or angry?" She picks one or the other, I think probably at random, and then I ramble on about the one she picked "Oh, you might be sad because you wanted Mama to snuggle with you and I was doing something else!" or "You might be angry because I said no more videos right now!". I'm trying to teach her that she can express why she is upset, and that being upset usually has a reason, even though I'm not always sure it does for her. I'm trying to talk a lot about happy, surprised and scared, too. I point out my own feelings to her a lot "Mama felt happy you picked out your own shirt! Mama was scared when you screamed really loud like that!" Like so many things with Janey, it's almost impossible to know what's getting through, but often months later she surprises me with knowledge of something I said long ago, so I can hope.

9 days till school starts!

Another little note

Tonight I heard a loud bang from the other room where Janey was playing. I called out "what was that banging sound?" There was a little pause, and then Janey said "None of your business!" I was thrilled! Of course not at the freshness, but that she answered and gave a typical fresh 6 year old answer! I have no idea where she got that. It was her second question answering of the day. The first was after we went to the town pool for a bit. I asked her when we got home if she had a good time, and she said "It was so fun". I'm really happy with the slight increase in answers lately. We've done little all summer but hang out and have me talk at her, so maybe a little is sinking in.