Christmas week

I had a tough time with Christmas this year. I'm not sure why. I never really got in the spirit---I would have been just as glad if it had somehow just not happened. I did all right in the end---I got the boys presents they liked, I put up a nice tree, we all had good food and a good day, but I did the bare minimum. No presents outside the family really, no cards, nothing major. I think Christmas depresses me more each year as somehow it really hurts that Janey doesn't understand it. That's my problem, not hers---she's perfectly happy not understanding it. She doesn't ask for toys, or wait up for Santa, or count the days. She knows carols and songs, and that's Christmas for her. I guess that's what we are all supposed to want---a child without greediness---and I have that. But I dream a little of her asking for a special toy, or being excited Christmas morning. As it was, she was completely uninterested in the toys I carefully picked out. She didn't even want to look at them---they were too new. She found an old Barbie and carried it around all day. Today she looked at the box of toys a bit more, and it was interesting watching her. She looked at one at a time, very carefully turning it to all angles to look at, and touching every part of it. Not playing with them, but I guess getting used to them.

This week is tough, though, after a mostly very good fall. Not having school is very hard on Janey---she very much needs that routine. She has fallen into her "wake up crying" routine instead, which is so so so so so hard. Once she gets crying, it's next to impossible to calm her down. She cries out requests---"I want Kipper! I want Oreos! I want milk! I want snuggle on Mama's bed!" and I try to help her, but she doesn't really want any of those, she just wants to feel better, and I can't do that. We got a lot of snow a few days ago, and we are essentially stuck in the house---the boys don't want to go anyplace, and I can't take Janey out in public on my own anymore much---it's just too scary, with her bolting ways and her sudden tantrums.

Janey's 3 year re-eval IEP meeting was wonderful. What a great bunch of people work with her. I was in tears of happiness after the meeting. I truly feel they all care about Janey, and want the very best for her. She is making some progress---painfully slow, as Janey's progress always is, but some. I felt like the woman who does ABA with her now REALLY gets her---she said Janey's vocabulary is very good, but it's actually getting the words out that is the problem, and I am glad she understands that, and is going to work on that. If you can catch Janey in the right mood and just ask her to name objects, she's a whiz. She can't tell you what they do, or show you how to use them, or use their names in a sentence, but she can sure name them.

I think what I need to deal with soon is my own depression. I don't like to admit it to myself, but I don't think I face each day lately with much vim. I dread each day, really. I am becoming more housebound, partly due to lack of money, because most anything I can think of that gets me out costs money, and partly because I'm so damn exhausted from doing all I can for Janey and the boys that I just collapse in my free time, or play Scrabble on Facebook, or read. I am not sure what I can do about the depression. I feel like it's reasonable depression---it's not out of no-place, and no therapist is going to be able to fix things---to give me money or to help with Janey. On the contrary, they will cost money. I feel like I do okay day by day, but when I stop and think about things, I fall apart.

I will include a picture here of Janey by the tree.

It's not a puzzle game

A thought flashed into my head the other morning. It was a very tough morning, as many have been lately. Janey woke up upset, and spent the first hour of the day crying. She would ask for something, then not really want it, ask for something else, scream, get hysterical, calm down enough to ask for a video, I'd put it on and it would somehow upset her....on and on and on and on and on. I was trying to do dishes. The dishes were in terrible shape, the laundry was piled up, and I was at my wit's ends. And something in my head said "You can't win this. There's isn't a solution". I don't mean that in a negative way. I mean I realized---there is no right way to do this. This isn't a puzzle game, where if you work at it, you will find the solution and be able to make it all work---Janey happy, the housework done, the money issues gone, the balance achieved. It's a rigged game. It will never all come right. I've been given a deck without some of the cards, or a slot machine with the odds against me. I've been feeling always like I somehow just wasn't playing right---that if I knew the right way to manage my time and money, the right things to do or say with Janey, it would all somehow finally come together. But it won't. And that was a strangely calming thought. I stopped the dishes, picked up Janey and held her. She still cried, still demanded, still wasn't happy, the dishes stayed undone, the bills stayed unpaid, but I was calm for a few minutes. I accepted that no amount of brainpower was going to solve this one.

Back and Forth

Janey's regression has backed off a little, but she's not back to what I would call "The Golden Month", September. She's been doing a lot more crying still, and just being unhappy. She seems to now have about one second's reserve of patience---she'll say "I want juice!" and then a second later---I WANT JUICE! I WANT JUICE!---and then the full-blown tears and tantrum. It can be tiring. But she's also doing some great talking and responding. On Thanksgiving she gave me a huge Thanksgiving treat. We were at a buffet meal and she said she wanted milk. None of the milk they had there seemed right, and she was starting to melt down when Tony remembered she'd had those little cups of cream for coffee there in the past. So I got her some, and she said, right away, unprompted "Thanks, Mama!" I cried. It was huge. Then I realized I might have mishead Mama and she might have actually said "Thanks, Arnold" which they say in a video, as the rest of the day she said that a lot, but who cares? The thanks was there. She is doing more of that answering. Sometimes when you ask her how she is, she says "Good!" This can be even if she's in the middle of crying. Or when I say something like "Let's get ready for school, okay?" she'll say "Okay!"

One of the things I've been realizing is how bored I think she gets. At school, she has pretty much one on one attention all the time, and if not, tons of kids around who are interested in her. At home, we do all we can to give her a ton of attention, but we have 2 other kids, housework, etc. There is very, very little that interests her on her own. I've tried every kind of toy I can think of, and none hold her interest. She likes videos sometimes, for a while, mostly Kipper, but that is not the way to spend all day. We try hard to include her in all we do, like having her "help" us wash dishes or do laundry, but that only goes so far. I think most 6 year olds can interest themselves in something for a little while---coloring, looking at books, playing dolls, etc, and most 6 year olds have friends they play with. Janey however needs us every minute. Add to that the fact she doesn't enjoy a lot of what we try to do with her (I'd sit all day reading books to her, or playing make-believe, but it just isn't for her), it makes it very hard to keep her happy all day. I'm so grateful for school.

We've had some very nice moments lately, though. One of Janey's favorite things in the world is Christmas music. She adores it. She welcomes all the old carols and songs back like old friends. I hold off until early November, but since then, it's all Christmas all the time. It's wonderful to hear her sing back a full carol, completely in tune and on beat, sometimes one she's only heard once this season. She did that with O Come All Ye Faithful. I've been making CDs of some of her favorite songs, all the same song on each CD but different versions. I do that so she doesn't get stuck on one song, but feels comfortable with the changes. She has strong tastes, which I am happy are usually like mine---she doesn't want things overly jazzed up. At the end of a song she particularlly likes, she will clap and scream in delight. I love that. I love it when I can share something with her on an equal level---it's amazing.

So it's a 50-50 thing. I think we are enjoying her more. She's developing more of a real personality, and finding her place in our family. However, we are also coming to terms with the fact it's never going to be easy. There is always going to be a struggle to keep her happy, she is not going to all of a sudden learn what a 6 year old usually knows, she is not going to suddenly get "unlocked" and be "normal". Not that I really thought that, but God knows I dream of it.

Some regression

Lately Janey has been regressing some. It's not severe, and I think it's less noticable at school than at home---she's only had a few tough days at school, but at home, it's been tough quite a bit. I think it started about 3 weeks ago. We had a weekend with a lot of worries about her brother's health (still ongoing) and she got less attention than usual. William babysat her a few hours, and she was fussy, and it seemed to set something off. That started a week with tons of crying at home, and not nearly as much talking. She had had such a great few months---happy, smiling, talking, just being a joy. Lately she is just unhappy more of the time, and I notice a real difference in engagement. She wants to be with me all the time, which is nice, but it's a lot of things like banging heads with me or poking her fingers in my mouth or other semi-aggressive things. She's doing tons of asking for food constantly, but not really wanting what she asks for---a pattern I see during her tougher times, as if one of the only things she can remember how to say is "I want...(food type)" She does it with videos too, as if she is looking for something that will comfort her. I've been trying hard to get her to play toys with me, or listen to books, or sing, and nothing keeps her interest for long.

All this, if someone with a "normal" kid talked to me about it, I would say was just a stage, or that every kid comes and goes with their behavior. But it's not like that with Janey. Every regression reminds me of THE regression, when she went from slightly quirky to completely autistic over the course of a few months when she was turning 3. It's been up and down since then, but then there was the "dark time" last spring---the few weeks of almost total screaming and crying all day and night, that led us to medication. And the medication seemed to help a good deal...until now. We have been doing what the psychiatrist wanted us to do, and trying to wean her off the Risperidal, but that has been gradual and doesn't really explain the regression. Tony often thinks her behavior is seasonal, with fall and spring being the toughest, as it used to be with William, and that might be the case. It's just impossible to say. A month ago I was feeling very hopeful. I allowed myself to think about things like her reading, her making good enough friends to be invited to people's houses, us living a life somewhere close to normal. After days like today with on and off tears all day, interest on nothing for more than a minute, eyes looking unfocused and vague---I don't think that way. I feel like I can never let my guard down for a second.

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.