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.

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.