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.

Another Year Ending

I glanced at Janey from another room today, and saw suddenly how big she is getting. She's turning into a school age girl, not a preschooler or toddler or baby. It's amazing and scary.

I'm trying to sum up this year with her, but it's hard. It was a year of ups and downs, as they all are, more extreme this year than in some cases. There was what I will always think of as "the terrible time" when she cried day and night for about a week, screamed like she was being tortured, more accurately. There was the giving in and putting her on medication, there was the adjustment period, and there was September, an incredible month of progress for her, the amazing start to school, the happiness and socialness and friendmaking. There was the regressions since then, there was this recent week which was tough. Overall, the big progress she has made this year is social. She sometimes greets people now, she is happy to see people she knews, she is more affectionate overall. Her talking is better in some ways, although still very limited. I think her vocabulary grew a good amount, but much of it is still buried and only comes out at the perfect prompting. She is showing very slow progress toward toilet training, and I am able to believe that will happen some day. Her emotions are a little more under control, but she still can and does have days where everything sets her off. I think Tony and I are feeling more positive in general about our life with her, but also more resigned. It was another year without a miracle breakthrough, not that I reasonably expected one, but I'm gullible enough to sometimes half believe the hype and think they sometimes happen. We know this is for the long haul. The day by day triumphs don't change the fact that for whatever reason, fate has dealt her a tough hand, and us too. I'm not going to say what I'm supposed to say, that we have realized she's a blessing and she has made every part of our life better. Of course she's a blessing---she's a beautiful, fascinating kid. But she has a disorder, a disease, if you will, that is going to keep her from living the life she would live otherwise, and it would be paternalistic and wrong to say I'm glad of that. Sometime, somewhere, something happened that robbed her of the potential she should have. It's not fair to her, much more than it's not fair to us. That's maybe not too uplifting for a New Year's Eve post. Let me try again. The best we can do for her is to accept her, accept what she is right now, use it as a starting point and do what we can to give her the best life we can with the limitations imposed. Not to accept her as some kind of canvas to try to work cures on, or some kind of reflection of some point about mankind, but accept her as a child with limitations, and love her.

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.