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.

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.

Three hardest things, three best things

I got this idea from another person's post I read recently---what are the three hardest things and the three best things in my life?

The three hardest---well, number one would be autism. I hate autism. Autism is not Janey, any more than diabetes is Tony or thyroid disease is me. Autism for whatever reason hit my little girl hard, and won't let go. I hate it.

Number two would be not having the funds to do everything I'd like to do for Janey. I don't crave money for myself much, I can honestly say. I'm not someone who wants or needs what money can buy much---I've often thought if I had money for a mansion, within days it would be run down and messy and I would like it no better than my house now. But when I can't do something for Janey because I can't afford it, or worry about the co-pays, or just know it will stretch the budget to breaking point, that is hard.

Number three---tiredness. How I'm always, always tired---partly a result of Janey so often waking in the night, partly because I'm on edge so often, partly due to a thyroid that doesn't work much at all, some because I have insomnia often, partly because I'm overwhelmed. If I had more energy, I could do a lot better for my family.

And the three best things? Those are easier than the worst things!

First, my family. My husband, who is 100% totally a family man, my sons, who are two of the most amazing kids in the world and my beautiful, fascinating daughter.

Second---life's little pleasures. They don't get enough credit. That first cup of coffee in the morning, the word games on Facebook, a comfy bed when I'm tired, the first feel of fall in the air, good television, of course and hugely books and reading, a great lawn sales, a long talk with a good friend on the phone---lots more. At this point in my life I'm not going to be having a lot of life's BIG pleasures---fancy vacations, brand new cars, elegant meals out---but I've got more than my share of the little ones.

Third---the luck of living in this place and time. I know how lucky I am compared to so many people in this world, and so many time periods in history. Even 50 years ago, Janey would probably not be able to go to school at all, instead of going to the amazing school she does. Heck, 100 years ago that wouldn't be a problem, as I would be long dead from my first pregnancy, Tony would be dead from diabetes, Freddy would have died from the terrible asthma attack two years ago---we'd be a whole section in the cemetary. I try hard to keep in mind that chance of time and place have made me very, very lucky.

And now to try to sleep!

What does Mama say?

Just a little anecdote--- tonight Freddy was asking Janey questions like "What does a cow say?" For fun, he threw in some people, and got to "What does Mama say?" Janey thought a while and then said "Great job, Janey!" and clapped her hands! I was pretty touched---either she thinks I am encouraging her a lot, or else she just didn't want to answer and was saying what she hoped I would say. Either way, it made me happy. It was a lot better than the other day when I got upset that she was pulling stuffing out of the couch, and said "We never, NEVER take the stuffing out of the couch!" and she got all upset and said "JANEY! You go in time out and STAY THERE!" I really don't think I've said that very often to her, maybe 2 or 3 times, but it shows---she remembers.

Out of the house

Lately Janey is really wanting to be out of the house a good deal of the time. She gets very bored and antsy, and gives us subtle hints like bringing us her shoes, trying to open the doors and getting extremely thrilled at the suggestion of going someplace like the grocery store. Yesterday was the last day of Tony's vacation, and we hadn't done much, mainly due to a lack of funds. So yesterday we went out more, mainly to thrift stores. At night we decided to go to Savers, and took Janey. The place was pretty dead, due to it being rainy and a Monday night. Janey was happy, and showed it by laughing up a storm. You could hear her all through the store, loudly. She laughs in, well, a little bit crazy sounding way. And people noticed. One old biddy kept looking at her, and obviously wanting to say "What's wrong with HER?" Others just looked annoyed. I thought to myself---"Hey, you'd all like it a lot less if she were screaming!" And really---a 6 year old girl laughing? How much can that really bother anyone? Later I put her up in the carriage and we looked at tops together for her. She got her heart set on a ugly cheap plain blue top that was a girls size 16. She kept trying to put it on, and I kept trying to sneak it back on the rack. There was no explaining to her that it didn't fit, and it was, well, horrible. But the whole interchange between us was one of my favorite moments as her mother so far. It was so normal in a way---mother and daughter fighting over clothes. It was something I enjoy---clothes shopping at a thrift store, and something she enjoys too. We had some laughs together, and eventually I managed to distract her from the Wonder Shirt. I left the store feeling very happy, despite the odd looks. I hope I have a lot more times like that---our very own version of normal.

Janey is Six

Janey turned six on Monday. It's been a nice week. Tony is on vacation, we are all relaxed and pretty happy, and Janey has overall been a joy. I don't want to credit the medication, but maybe I should a little. She just seems a lot more relaxed. It's also probably just her getting older, and us modifying ourselves. I think my thinking changed this summer at some point. It might have happened over a few day period when three different people I respect all said pretty much the same thing in different ways---it probably makes no sense to spend lots of time and energy trying to teach Janey a lot of academics right now. We've been trying for a long time, and she hasn't learned and all of us get upset and worked up. I'm not giving up on her learning, I'm giving up on it being on our timetable. I have faith she will learn a lot, when she wants to. Just like she will be toilet trained, when she wants to. It doesn't work that way with "regular" kids, but I have to accept it is the only way it really works with autistic kids. The big difference is that they are not trying to please you. Almost anything you teach other kids has an element of having them do what you want to please you---to make you proud they get an "A", or go pee-pee in the potty, or tell you their shapes, or what have you. Janey doesn't live to please anyone. So when she decides herself she is going to do something, she will do it. I'm not saying you can't control her behavior at all. But the way it is controlled is by making HER happy or upset by what she does. So when we get mad at her for spilling all her Nestle Quik powder on the floor or playing in the litter box, we are making HER feel unhappy, and that is what she remembers. It's harder to think of a way to make HER happy she knows a letter or a shape. I guess I could get mad at her for NOT knowing them, but that's cruel.

And in making that connection, and giving up some of my expectations, she seems so much happier. And we are enjoying her---especially sometimes in contrast to her teenage brothers. It's fun to have someone that can get extremely happy over a bowl of oatmeal, or a 100th viewing of a video, or a trip to McDonalds, or a hug. It's sweet she wants to snuggle me when she's tired, and hear the songs I've sung so many times. It's exciting hearing what she chooses to say---if we aren't trying to make her talk in a "normal" way, every word can be a surprise treat.

And the OCD, don't tempt fate part of me has to temper all of this. I don't know how school will be, when it starts. I don't know how much of her happier attitude is medication induced. I don't know if this is just one of those unexplained good stretches, to be followed by an unexplained bad stretch. But I hope we are getting to really know Janey, and that is helping.

Distrust

Through a long complicated series of events, I've been forced back into thinking about Why. Why Janey has her issues. I got a skin infection and was put on a sulfa drug. From the minute I started taking it, I didn't feel good. After a few days, I knew HOW I didn't feel good---I felt like I did when I was taking the Aldomet, when I was 12 weeks pregnant with Janey and had a near fatal reaction. If I had been smart, I would have stopped taking the drug right when I realized that. But instead, I tried to do the right thing---I called my health plan and tried to explain how I was feeling and ask for a different medication. The nurse I talked to shut me down---basically said she was sure I had no reaction to the medication and I should keep taking it. And I did---right until after a dose I took last night sent my throat into a closing up feeling, and I wound up having an ambulance ride to the emergency room, where I had quite a fever, chills and blood tests showing my liver function was being compromised---AS WITH THE ALDOMET. And even then, the first doctor I saw said he was sure there was no connection---JUST LIKE a doctor said the day after the awful Aldomet reaction. Finally the second doctor did acknowledge what I had already read many places on the internet---that sulfa drugs often cause a fever reaction and coughing similar to mine, and I should stop taking it and not take sulfa drugs again.

I don't know if the Aldomet caused Janey's problems. I can never know for sure. But I think a lot about the day they were prescribed for me, when my blood pressure was rising fast early in the pregnancy. I saw some substitute doctor that day, and she was so casual---"Oh, Aldomet's the safest drug around, very good for pregnancy...." And I guess it often is, but my later research has shown it often causes horrible side effects, almost every one of which I experienced. That, and other experiences, like the neurologist who sort of off-handedly said Janey's MRI wasn't normal (while a further one said it was normal, and still, who knows?) and the recent few bad experiences with taking Janey to doctors, has left me with a distrust. Not of all doctors, and not of medicine in general, but of taking what doctors say as gospel. I'll never have that faith again. I need to always verify for myself.

And it comes back to WHY? The useless question. If I had gone to a big hospital for my medical care with Janey, rather than staying at the smaller clinic where I was comfortable, if when Janey's heartbeat started lowering to almost nothing, they had done an immediate C-section and the cord had not been strangling her, if I had not taken the Aldomet, if somehow my pregnancy was like the one with Freddy, healthy---would Janey be okay? Or should I think the other way---that it's a miracle she's here and as relatively intact as she is? Should I have gotten the message with William that my body is not cut out for pregnancies, and stopped there?

None of these questions have any answers, and I should not ask them. It doesn't do anyone any good. But I do need to keep a lesson in mind. I know my body. I know my kids. If something feels wrong, I need to respect that feeling. The consequences are possibly too much if you don't.

Really?

I startled Janey last night. It was interesting---I don't think I've ever startled her before. She doesn't startle easily---she gets scared, but sudden unexpected things don't usually faze her. But she had fallen asleep maybe 15 minutes before I walked in the room and put on the computer. She jumped right up and started screaming and crying. She said "I scared you! I scared you!", reversing the pronouns as she usually does. I went over and held her and talked to her, and she started saying "I'm a scarecrow! A SCARECROW!" I realized she had watched an episode of Bob the Builder, and I think there's a scarecrow-like weird pumpkin head guy on that. Maybe she was having a nightmare, or she just thought scarecrow meant a scared person, or who knows what. I said "Scarecrows aren't to scare people. They are just to scare birds." Then she did the most unusual thing. She leaned in very close to me and said in a very low voice, in a tone I've only heard her ever use once or twice, what I would call a "normal" tone, a tone that sounded non-autistic, "Really?" It sent shivers down my spine. It's moments like that which can make people think somehow there is a "normal" kid inside every autistic kid---little moments of, I don't know what, clarity, or coincidental perfect timing, or something. I can't explain just how the tone was---it was just very, very different than usual, and had the body language along with it---the way she was asking was like "You can give it to me straight here. I want the truth" And then it was over, and I don't want to make that much of it. Mostly she's been pretty much as usual. Fairly happy most of the time. We've been home and I've been letting her do a lot of what she likes to do, and trying to do my own modified "floor time" about 4 or 5 times a day, just gathering a bag of toys she might like and interacted with her as much as she will allow, and trying to sneak in a lot of little bits of knowledge like counting or colors. Which I know you aren't supposed to do with floortime, but I said it was modified. I've been reading to her a lot too---pretty much just nursery rhymes, which I have a large collection of now. She likes to know what to expect to hear next---just the different pictures in the different books is enough surprise for her.

Two weeks until six

Janey will be six two weeks from today. Birthdays always bring up a nest of feelings. Every year, I think to myself "Maybe next year she'll know what a birthday is, look forward to it, get excited about it". I think this year I'll stop thinking that. I get with her like people get about getting older---I don't want her to get to be older, because that's just putting her further from where she "should" be mentally. That's a bad thought, but a truthful one.

Presents are another nest of bees. She already got one present, from the very wonderful lady who has volunteered to work with her this summer. It was so nice---a fairy wand that is perfect for her, and wooden bears you can change the expressions of. And of course Janey had the typical gift reaction---freaking out, screaming, throwing it around. And the woman was hurt, despite trying not to be. And I was mortified. And of course within an hour, the fairy wand was her favorite thing ever---she's loved it right to death already. But presents are tough---they aren't expected, they require a reaction she doesn't understand, they are nightmares for her in some ways. As would be a typical birthday party. And that's fine---for her. For me, it's harder. I still hold onto the dream of giving her a little girl party, with some special presents that she will be thrilled about. I dream of getting the American Girl catalog and going through it with her page by page, talking about what we would order if we could, and maybe picking out a few special thing to get, and some Christmas blowing all my money and buying her a doll and furniture and it being something she remembers always....and it's never going to happen. And I need to get over that.

I ordered her presents from a web site I should give a shout-out to, for other parents of autistic kids. It's officeplayground.com They are aimed at little toys for use in offices, but they realize a lot of the same toys work for autistic people. They have all kinds of "fidget" toys, things you can play around with using your hands, like stress balls, Tangles, those toys with water inside that looks like waves, etc. Their prices were good and I ordered her about 10 little toys. I hope she likes them. It felt like a realization. I didn't try to get her typical 6 year old toys, because that's what I wanted to get. I tried to get her something she'd love. I need to do that with as many aspects of her life as I can. She fights such an uphill battle just fitting into this world; I don't need to add to it.

Her birthday is also Freddy's birthday---he will be 13. Maybe that all was arranged somehow---that I'd have another birthday the same day. Who knows? Freddy wishes he had his own day! He's ready to be a teenager---he's been one for a while. It makes both their birthdays very special to me. I'm so lucky to have them both, and their brother William.


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Waited a day

I waited a day to write about something that happened yesterday, until I'd had a chance to calm down. I have now, and it's not as fresh and hurtful, but still very much so.

Janey had an appointment to see the psychiatrist that prescribed the medication for her a few months ago, to check on her. We went in by train, which is a whole story in itself for another time. The appointment was in the Internal Medicine department, as the psychiatrist is not at that office all the time. So we went in there to wait after checking in at the main desk. Janey was crying. She is scared of doctor's offices or anything that looks like one. I was holding her and trying to comfort her. She was a little loud, but in my eyes, no terribly so. It had probably been only 3 to 4 minutes when one of the three receptionist there came over to me and said (I'm trying to recall the exact words) "You'll have to wait in a different place. We have patients here and they can't have that kind of noise---she's too loud. She can't be here" It was one of the very, very rare instances I was so upset that I didn't use my internal censor that usually keeps me from saying close to what I think. I said "SHE is a patient here. She is here to see a psychiatrist BECAUSE of her anxiety and crying. There is no other place for me to wait. She is severely autistic, and I can't totally control her crying". Or mine either---by that point I was crying hard. The woman and the other two receptions jumped all over themselves to say they were sorry. I am assuming they thought that I was the patient, and I had just brought along my bratty kids for fun. I really hope they didn't know JANEY was there to see a psychiatrist. And even if they did, I can't possibly imagine how her crying would disturb patients, who were behind heavy doors and in their own rooms. And even if they did want her gone, they could have handled it a million better ways, like saying "Poor thing, she's having a hard time. Can I find you a place to wait where she would be happier?" What they did do is take us to a couple chairs far, far into the bowels of Internal Medicine, like a tiny waiting room for the psychiatrist. I sat there and cried and cried. I couldn't stop. I am sure I looked crazy, but I've always felt like a doctor's office was one place where I would be exempt from the stares, the angry looks, the judgements that keep parents of autistic kids from leaving the house much. I guess I was wrong.

I am trying to figure out if I should write a letter or make a call about this. Everyone says I should, but honestly, I don't think it would make much of a difference. It's how life is. What made me cry, I think, is realizing this is my life from now on, and worse, Janey's life. She is going to live her whole life in a world that has little understanding of people with mental illness or retardation. Maybe some parents would see that as an incentive to take on that world, but that's not me, at least not directly. I will protect her, keep her as happy as I can, but I'm not going to fix the world.

The Good Part

There aren't that many good parts to autism. There are MANY, MANY good parts to Janey, but these are despite the autism, not due to it. Yesterday, however, was a small rare exception. We were all tired out from all the heat and didn't feel like cooking, and it was getting late, so Tony decided to get Burger King for dinner. We almost dreaded asking the boys what they wanted---everyone in our family is passionate about food and highly opinionated, and usually any food-related decision results in lots of arguments and fierce debate. I guess this time they were just too hungry to do that, though, so they fairly calmly just told us what they wanted. Then we told Janey we were going to get her chicken nuggets. You would have thought we said we were giving her a million dollars---she literally danced around the house with excitement. She came with us in the car and just was so thrilled the whole way over to the Burger King. We had been talking about cheeseburgers and she said "Want cheeseburger!" Tony said "You want a cheeseburger AND nuggets" and she echoed "Cheeseburger AND nuggets!" When the order came, she yelled out "I want KING NUGGETS" I don't know if that was from Burger King or if she remembered they were shaped like crowns there. We gave her them in the car and she was on a total high---it was like Christmas for her. I got thinking---this is nice. She doesn't expect the minor treats in life---she's not able to think that far ahead. But when they arrive, she doesn't modulate her feelings---she can get just as excited over the nuggets as she would over some major present. She doesn't argue with us over what we are going to do---she really can't. She certainly is often unhappy, but like the happiness---it's in the moment. I'm not going all "trip to Holland" here, but after dealing with boys who are highly verbal, extremely interested in debate and emotional, it's at rare times kind of nice to have Janey---thrilled to just have chicken nuggets.

Never know when it will hit you

Today was mostly a very nice day. Janey and I went to the library, where she played for a bit in the children's room while I looked for books for her (and only freaked out when I showed her a book by the Maisy author that wasn't a Maisy book---that was a bit much for her, but I took it out secretly anyway), and then we went to Chipolte with Freddy, and Janey was an angel there, after it being such a horrible scene a few weeks ago---she was as happy as could be, and ate well. She was even happy when I went to the Savers after that to get Freddy some school clothes. She has been a sweetie.

So what hit me? I started reading a book called Not My Boy! by Rodney Peete, an NFL star whose son was diagnosed with autism. It was about how he came to terms with that. There is of course all the awful early scenes with people saying his son is unteachable and low-functioning autistic and it's all so upsetting. Then gradually as I was reading, I realized that his son, who was 4 in the part of the book I got to, was FAR ahead of Janey---answering questions, writing letters, reading some, explaining what a fire engine was used for in one pivotal scene, etc. And I thought---and they think HE is low functioning? And I started thinking about how little Janey really can do---she's about as far from answering a question like how a fire truck is used as she is from flying to the moon, if she ever wrote a letter, it would be a day of all days...and I got thinking about her, and my friend's daughter, and all the other kids out there with autism who don't even seem to fit into the autism world anymore---the non-success stories, the kids who have "got it bad". And yes, I'm not supposed to think like that. And I'm not sure why it hit me so hard this particular day. I don't read a lot of accounts about autism, and this is a well written nice one, but I don't think I'll read any more for a long time. I start thinking not nice thoughts like "what have YOU got to complain about?" and that is not helpful to me or anyone. And I'm just thinking---autism really is a rotten thing to have. I don't mean Janey is not a joy, a wonderful girl who many times a day makes me very, very happy. But it's not fair to her. Why should she be autistic and retarded? Where is that fair? And the grownup voice inside always says something like "Life isn't fair. Think of people who have lost children" And I do. And I can't even think about it, it makes me so sad for those people. I haven't lost a child, I have her. But life is going to be hard for her. Now is probably the easier part. She is a beautiful girl, and I live in terror of that---of the world out there that takes advantage of beautiful girls, the world that values smart and self-assured and hip, a world that pays a lot of lip service to including all, but can't even find the funds for a single bit of respite, or after school care, or can't field a camp that can handle her. And I need to stop crying.

Wasted money, discouraged

I did a lot of research the last few days, trying to get ideas about good toys for autistic kids. Janey has very few toys that engage her, and I would love to find some. I read a few places how some kids like the Vtech V-Motion. She's interested in video games, at least in trying to get in on ones the boys are playing, although she can't figure them out. I thought it was worth a try, so bought her one and one game (Wonder Pets). The console wasn't that much---$40, but the game was another $15. She had less than zero interest. She didn't get how the motion sensor worked at all. You can set it to use the joystick, which I tried, but she wasn't into it much that way either. Part of it I think is the horrible graphics. I don't know why that kind of system is about 20 years behind "real" systems. And part of it is just that all of a sudden the game demands you do something like figure out what letter or shape to use, and she can't do that. I wish there was a game JUST FOR HAVING FUN for her age---one with decent graphics, where she could move a controller to drive a car around, or explore. I think she's be able to figure it out. Oh, well. I also got her a big mushy ball with pocky rubber spikes, and she likes that, and I got a bunch of Mister Potato Head stuff, which engaged her for about 15 minutes (with me right there of course, egging her on). And there went most all of the money I managed to make working all week on ebay. I wish I had more money. Don't we all. It just seems so unfair sometimes thinking there is ANYTHING out there that could help Janey that I just can't afford. I know that is life, but sometimes I wish life wasn't like that. I would love to get her an iPad. I think she'd be able to figure that out easily, with the touch screen. I'd like to get her a whole huge amount of sensory type toys, fill a whole room with them (if I had an extra room). I'd like to find the perfect camp for when she's a little older. I'd like to be able to even afford after-school at her school. I'd like to be able to get her extra nice clothes. I wish I could afford a babysitter, but with that wish I also would have to wish I KNEW someone would would babysit her for pay. As you can see, this is a dreaming session. I just felt so fed up today with how I chose to spend the little money I had on something that seems like a waste now. It might work for her someday. And it's just money. I'm just indulging myself in self-pity here. Hopefully anyone reading has given up on this post by now, so they don't have to hear all this! But if you didn't, I should say Janey was quite sweet today, good at the ToysRUs, cheery even if she didn't want to play anything, looking precious. So I can't blame her for my rotten mood!

Summer

The last week has been fairly tranquil. Janey is calm most of the time. I'm not asking much of her---I'm getting into my default hot weather mode, which is going no-place and doing nothing. I HATE hot weather and it's been a hot summer. Janey has been watching more TV than I'd like, but she likes it and is really reacting to it---not just sitting there staring at it, but laughing and playing close attention to her favorite parts. We are working on workbook pages and papers the school sent home a lot. Janey will try if I have M&Ms. She is getting pretty good at tracing paths, like when the paper has a little maze to follow (but not really a maze, as it's all the right way). I am trying with letters, but I don't think she gets them at all. Numbers are a little more promising. Shapes still a struggle. Her best area is naming things, like when there are pictures on a page. IF she knows she might get a reward, she'll name all kinds of things. She often just uses the name of the last thing I showed her, though, if she's not really trying---like I'll show her a pig and name it, and the next thing is a table or something and she'll say pig. It's frustrating. It makes me feel like I'm trying to get her to do a party trick she really doesn't get. Her talking has lessened again lately. It's mostly all the old mold---"I want...." She fits everything into that mold, creating sentences like "I want turn off the light" "I want I will get you that"---meaning she wants me to turn off the light or she wants me to say "I will get you that". Sometimes she emphasizes the "I" part with pointing to herself.

I think she does a constant monitoring of the areas she wants to explore. If I leave the fridge un-bungee-corded for ONE SECOND, she is there taking things out. She checked the door to the hall many times an hour, as she does the bathroom door---she very much wants to start a bath for herself with her clothes on.

We had a very delightful day last week. I had everything locked, and I knew she couldn't get away, but I looked away and couldn't find her when I looked back. I checked everyplace (and we have a sadly small apartment) and didn't see her. I was starting to panic, although there was literally no-place she could have gone. I looked again and found her where I hadn't looked the first time---in the cat litter box. Like it was a sandbox. I admit I screamed at her. I think it's the first time I all out screamed at her. I am not a screamer. But I was so worried at not seeing her the first time, and so sickened by her thinking that was a place to play, and so annoyed as I had just given her a bath. She was very upset by my screaming. I was surprised it affected her so. She looked so sad. I gave her another bath, of course, the bath of a lifetime. During the bath I asked her more times than I needed to to tell her she was sorry, which she did. Afterwards she wanted me to hold her for a long time. I talked to her about not going in the kitty litter box, how we NEVER EVER EVER go in there, etc. She hasn't been back. I hate screaming like that. But I guess it was a natural reaction and probably did make an impression.

Worn Out

The screaming is still mostly not happening lately, which is wonderful. It's been replaced, though, by a sudden desire to escape. Janey is drawn to any unlocked door. She wants to go up and see her uncle, who lives upstairs, every minute of the day. We have to keep the doors to our apartment, one of which leads to front stairs and one to back stairs, locked at all times, with chains also. Janey is studying the locks and chains, and I think will soon figure them out. We have put hook and eye bolts all around too. It makes getting out of the house a long process for all of us. We are lucky our doors don't open directly to outside. That would terrify me. She also is drawn to the bathroom---she wants to go turn on the bath water or the sink water and play in it, so we are bolting that door too. Even with just the rooms she has left, she finds many ways to keep the day hopping---she will take everything out of the fridge, so we bungie cord that shut, she likes to take silverware out of its drawer, and we need to figure out that one, she turns on and off lights all day, she tries to use the remotes and leaves them all around the house with the TVs and video games in a state of random on or off and with all sorts of reconfigurations. She still sometimes puts random things in her mouth. She woke me this morning by ripping the pages out of a book in my ear. I literally have to watch her every, every, every second. I would be reading this if I had a "regular" kid and thinking---every mother should do that. Well, you don't have to in the same way. You can read a book while they watch TV, you can let them play with toys in one room while you are in the other, you can doze a minute on the couch if you are very tired. I know---I had two more or less "regular" kids that age. It's nothing the same. It's a constant state of alert. I've taken Janey to friends' houses in the last week or so and they have admitted they are exhausted when I leave, and that's with me AND them watching her. I've been lying in bed worrying about school. I picture her opening the door constantly and taking off down the hall. I know that she is watched very, very well at school, but I still worry, as I do any second she's not right next to me. I think part of it all is that she'd rather just do something for herself than ask me---that's usually a lot easier for her. She is better with her hands than the boys were at her age, because they were askers---they asked me to do what they needed done, probably more than most. Janey just goes ahead and tries to cut cheese up, or spread butter on bread, or go for a visit upstairs---asking is too hard. I am so tired. I need a break. But my mental state is still much better than it was during the "screaming time". So somehow I'll get through the summer.

Beach Time

I'm up early, and was browsing around the internet and reading some blogs that other blogs linked to and such. Sometimes this gets me down. I feel like a lot of bloggers that write about their children with special needs have it all so together. Maybe it's because a lot of them are religious. They are very confident it's all part of God's plan. I don't have that comfort. I wish I did, sometimes. I know it might make things easier to feel like it's part of plan, like there is someone guiding me through this. But at this point in my life, I don't feel that way. I feel like all decisions are mine to make, and if I make them wrong, it's not because there was a reason for that in someone's plan, but just because of poor decision-making or bad luck or just random chance. Anyway, that's more of a side note.

As you can see from the picture, we went to the beach yesterday. It was a great time! I was comparing it to other beach days last summer or before with Janey that were very tough. She has always enjoyed the beach, but in the past showed her enjoyment by running away from us as fast as she could over and over. This time she actually stayed with us and calm enough of the time so that we could enjoy ourselves without watching her intensely every second (just every other second or so) Freddy watched her for a bit and both Tony and I got out in the water and swam, which we both like a lot. Janey dug some holes, and walked around along the edge of the water and generally had fun. At one point she said "I want to jump in the puddles!" which is something she says a lot, but she meant jump in the water, and it was nice to be able to say "You can jump in this big puddle ALL YOU WANT!" She picked up sand and held it and felt it in her hands, and dropped it and picked it back up and all the things she likes to do with dirt but usually can't. The beach is really an amazing place that way.

And of course I'm thinking about and wondering if it's the medication that is helping her be able to enjoy things. And why should it matter? But I feel somehow like it's the easy way out---like if I had done a better job making her happy without it, she wouldn't need it, and all the possible bad side effects on her growing brain. And I curse myself for thinking that---she is most certainly happier the last week or so than in years---not a frantic manic happy, but just able to in general enjoy things---and I think more open to learning, using a little more speech, making longer sentences---so what's the problem? It comes back to that feeling of responsibility, and also my own OCD type feelings that something good has to cause something bad. Like if it's easy, it must be wrong---that you don't get real help from a vial of medication. And of course I don't know if that's all that is working. It could be other things---she is out of school, and maybe school was harder on her than I realized. She is spending more time one on one with me. We are adjusting our lives more to her needs---the things we are doing are based on what she can handle and enjoy---not that we always didn't take that into consideration, but I think now it's the key factor in everything we do. And things certainly aren't perfect---she still has meltdowns quite often when she's tired, or overwhelmed, or who knows why.

So I should probably stop writing and get sleep while I can. And just be grateful for nice days like our day at the beach.

Holding my breath

I haven't written in a few days, because of my extreme fear of jinxing things. The last 5 days or so have been pretty good! Janey hasn't been screaming or crying much at all. I think the higher dose of the medication is working, or something is working. She just seems happier. When she starts to get upset, it's much easier to get her back and calm her down. It's so wonderful to have a day without extended crying times. Along with the medicine, it might also be partly just adjustments we have made. I'm backing off some on taking her out many places---I think she needs some time mostly at home, very predictable routines. Not totally, but a lot of the day very low key. My parents were here yesterday and got to see a calm Janey! (and hear our stories about the awful time a few weeks ago) We went to see my friend Fab a few days ago and Janey was happy almost the whole time, and saw my friend Amy a bit ago also and had a very good time, and got to see Janey playing with her daughter, and actually talking back and forth a bit (with her confusing reversed pronouns---they were playing with a water squirter and her daughter said "Do you want me to squirt you?" and Janey said of course "Squirt you!"---which reasonably the daughter replyed "She wants me to squirt myself!") The nights have featured pretty good sleep, and overall it's been a nice stretch!

As for talking and so forth---I feel like it's been reasonably good. But I think I only compare Janey to herself. When she says something I haven't heard before, or does something new, I get very excited. Sometimes the people around me seem a little perplexed as to why I'd be that thrilled to see her doing something most 2 year olds probably do with total ease. Yesterday she asked for water "in a glass"---she always adds that, I'm not sure what she thinks we usually give her water in---and then glanced at the fridge and added "ice---want ice" which I thought was a great sequence---asking for something, and then adding on an appropriate phrase. But I realize that's the kind of talk probably most 18-24 month olds would handle with ease. The other day I asked her to draw a circle, and she drew something definitely round. I was so happy. I realize lately after the horrible crying times, I think something changed in me. I stopped thinking as much at all about her delays and autistic behaviors. Not completely, of course, and I will think about them again many times, but for now, if she's happy and making even very minimal progress over her own past marks, I am happy. I'm only holding her up to herself. Tony is feeling the same way. It must be a landmark for a lot of parents of children with retardation---the moment you realize that your kid is your kid---they have their own measuring stick and it's not the same as other kids, but you can still feel happy about the tiny steps they take, and laugh with them at funny things, play with them at their own level, find joy in what they enjoy, etc. I'm being uncharacteristically cheery and maybe a bit Pollyannaish, but for once I will let myself be that way.

Highs and Lows

Yesterday was a perfect example of the highs and lows of life with Janey. During her non-screaming times, she was quite a joy---engaged, smiling, cuddling, resourceful and happy. She asked for things in a complete way "I want some big yogurt right now" "I want some Ovaltine milk in a baba with strawberry" "I want to watch Bob the Builder" (which she's never watched before that I know of, and which she had no interest in once I found it on instant Netflix). She brought me everything she thought I needed to get her wants met (the yogurt and a spoon, assorted remotes, etc) She said several times "I want to cuddle on Mama's bed". She talked about her love for the legendary rainbow shirt "I love the beautiful rainbow shirt". All nice stuff. And then, we'd let our guard down---and the other Janey would emerge.

The boys wanted to go to Chipotle for lunch. That's not news---they would eat there every meal. Janey was having such a nice day, and she usually like it there a lot. So off we went. She was good in the car, we were all having fun. We pulled into the parking lot and suddenly it hit her we might be having a notion to go to a restaurant. She started screaming. We kept telling her it was Chipotle, her favorite place. She kept screaming. We went in---there was a line. She screamed her signature scream---so loud and intense that every single person in the place was starting. That wasn't my imagination---that was the truth. The man ahead of us in line gave me a look like he wished he could kill us all on the spot, and simply walked out. That's the power of Janey Scream. The boys were very upset. I said I could take her out, but I had the plastic to pay, so they would have to use their own money. They didn't have enough. I decided to last it out until I payed, and take everything to go. The next 5 minutes were hell. She lay on the floor, kicked, took off her Crocs, tried to bite herself---loads of fun. When I was paying, the cashier tried to give her a bag of chips. That happens everywhere we go when she's screaming---people try to give her things. It's a nice impulse, but it never works---she throws the things, or pays no attention. The people almost always react the same way---they shrug their shoulders and say "I tried..." For some reason that bugs me. It shouldn't, but it does. So we finally got out of there, got to the car, she screamed most of the way home, but calmed down in times and we had a good afternoon. But because I'm a glutton for punishement....I wanted to go to the Savers (thrift shop) last night. Tony decided to come along, and that meant Janey too (William can babysit, but we are avoiding that lately as she's so tough). Usually the Savers works out---but guess what? Not this time. She screamed the minute she got in there. Tony tried walking around with her, keeping her busy, but there was no way I could shop hearing here, and thinking about how all the parents there were thinking "Why in the world do they bring that girl in here?" and I'm saying to them in my inner dialogue "Okay---you want me to never leave the house? You want her behind closed doors at all times so you don't have to hear her?" and getting myself all worked up. Tony took her for a walk outside, but I couldn't shop much more---I checked out and left. This time she screamed all the way home, at home, for about an hour. At one point, she actually said "I want my crying medicine" which is what we have been calling the Risperidal. I think she hates that out of control feeling. Once she calmed down some, she said "I am angry!" And she is, I am sure, and sad, and lots of other feelings she can't explain.

Today Tony is going with William to the orientation for a summer transportation program William is in. So another day to try to get through. I think today I'm staying home.

Why I don't think much about why

Why is Janey autistic? That's something that of course I wonder about, but not something I give a lot of time to thinking about. Why not? Because at this point, it doesn't make a lot of difference. The only exception would be if whatever made her autistic is still harming her, and I don't think that is the case. If she had continued the downward spiral that hit her so suddenly, then I would think that that something was still happening. But I think whatever caused her to be autistic happened during my pregnancy or at the time of conception, when genes combined, or at birth, when the cord was around her neck and her heart rate kept dropping. I don't think it's diet or a vaccine or mercury. I'm not sure about that. But to devote myself to figuring it out, when that provides little current help to Janey, would be a waste of time, in my opinion. I've read a lot of accounts about children with autism. Something I've noticed is that when the parent becomes obsessed with "why", and picks a theory they believe, and starts devoting themselves to that theory, suddenly the account stops talking much about their own child. And I can almost understand this. If I had the means, the help, the way to have someone else take care of the tough day to day parts of caring for Janey, I am not proud to say it, but I would probably spend less time with her too. I think sometimes the only way a parent can let themselves feel this is okay is to decide it's important to help the wider autism community, to devote themselves to helping ALL children with autism, not so much their own specific one. And I don't blame them for it. But I think if I had the help, the support, I would use the time for other things---to sleep, to get out the house, to get a job that has nothing to do with autism. I would try to admit to myself and the world I need a break from autism, and sometimes, a break from Janey. Then when I had had my break, I'd come back refreshed and able to better help the one person with autism that it's my responsibility to help the most---Janey.

My morning so far

4am---Tony's radio alarm goes off loudly, but not loudly enough to wake Tony, although it wakes Janey and me. Janey luckily goes back to sleep after a little crying

6am---Janey wakes for good. She is not happy. I give her milk, oatmeal and an apple. She eats them, is happy for a bit, and then starts the daily screaming spell. She screams for an hour. Most of this time, I have her stay on the "screaming couch". My head pounds. Finally, she stops as quickly as she started.

7am---Janey tries to sneak upstairs to see Uncle Pino. Her new thing is opening the door to the hall and going up on her own. She did this yesterday for the first time---I was turned away and she was up the stairs before I turned back. Now we are using the lock and the chain on the door. She is working on figuring them out. Tony went last night to buy lots more chains.

7:30am---pull-up is off. Janey sits on the potty---which she likes to do occasionally, although NEVER ONCE has she actually used it for its intended purpose. But it's good to see her sitting there.

8am---I put in place my summer plan of getting out of the house early, and we drive to Houghton's Pond, a park and swimming place a few towns over.

8:20am---out of the car at Houghton's. Janey is very happy and the weather is perfect. We run over to the playground. Janey stops short. I wonder if she's overwhelmed. In a minute she takes off her Crocs, which I notice are wet. She has peed into her pull-up. She holds her urine forever, and then pees so much it soaks everything. We head to the car and change her shorts and pullup.

8:45 Ready to finally start the fun at Houghtons. We walk toward the water. I notice Janey is walking oddly. I check---she has filled her pull-up the other way---something she does about once every 2 days. I am out of fresh clothes. We head back to the car

9am---we drive home.

9:15am---change all of Janey's clothes, have coffee, try to think what to do the rest of the day.

Splash Park

I took Janey this afternoon to a splash park near us, a really nicely done one that used to be a wading pool and now has lots of fountain type things to cool off in. My friend Maryellen got us to go---she is very good at helping out with Janey and encouraging me to try things with her. It went pretty well. Janey was quite happy there. She seemed to like seeing all the kids, and she didn't mind the water. I think if we hadn't worked to get her in the water, she would have mostly walked circles around the edges, waving her arms around, but with a little encouragement she went into the water areas. It's interesting how other kids react to her. Kids her age or younger seem to have no clue she isn't totally mainstream. A boy ran up to her and tagged her and said "You're it!" and a girl brought over a Toy Story Pez and tried repeatedly to show it to Janey. Janey pretty much ignores them, but they don't seem to notice or mind---maybe a non-interested kid is less threatening if you are a little shy or something. Older kids seem to see there is something odd about her, but I haven't yet seen one making fun of her---I hope I never do, but that's too much to hope. Adults almost always now seem to know either that she is autistic or that something is odd about her. She gets some stares---mostly when she is yelling with anger or with happiness, or just really getting into circling and flapping. I don't mind the stares as much as I thought I would before I had a child like her. She's who she is, and usually I am concentrating so much on making sure she's okay that I don't have a lot of time to worry about it. She did a cute thing at the park---for about 15 minutes, she put her thumb in the "thumbs up" position to show she liked being there. The crying today was limited to the morning scream. I will have to see how things are tomorrow with Tony at work. She has no sense of work or why he should sometimes be home and sometimes not. I think that must be scary---the boys are sometimes here and sometimes not, as is Tony. It's why I don't go many places---I need her to have someone she knows will pretty much always be around.

Daily Scream---but okay!

The last few days have been okay. Janey seems to have a need for a daily screaming time. It's occuring in the morning hours, including that awful lawn sale scream. The afternoons have been much more tranquil. This morning we almost saw it coming. We told her she needed to scream and kick on the screaming couch, one of our couches. She stayed there pretty much, and seemed to get the idea. It was about a half hour of intense hysteria. Now she is calm.

The strange thing Tony and I have both noticed during this tough time is that we think she's actually making a lot of progress lately. Her talking is better---we are hearing more fairly long ideas expressed ("I love that rainbow shirt so much", "No, YOU are a camel") and she is following simple one or something two step directions a lot better. She is remembering things I ask her to say instead of screaming except for when the real storm is going on, she says things like "I am ANGRY!" "I need ATTENTION" "I want to CUDDLE YOU RIGHT NOW!" She is being very sweet and lovable when it's not screaming time. I think if the screaming was just an hour a day or so, and fairly predictable, I could handle it. I wish it didn't have to happen, but I can handle it. I wonder if as she understands more, she realizes more how apart from other kids she is, and that is hard. I don't think she's quite at that point, but you never know.

Afternoon better

When I write a very depressing post like that last one, I start feeling guilty---like I am painting too bleak a picture and upsetting people. Things really are better this afternoon. Janey calmed down and is quite cheery. She ate a good pizza lunch with us, and now is watching the World Cup US/Ghana match with her father. Her good moods come as unpredicably as her bad moods---they both come on a dime and leave on a dime. If I knew what made her sad or made her happy, I would do whatever it took to get the happy more of the time.

Unbearable

It's silly to say unbearable because, of course, what choice do we have? None. But it felt like the word for this morning. Janey cried much of yesterday---by crying I mean screaming---the horrible, top of the lungs, inconsolable screaming. She did get happy for a few hours in the evening. She woke up happy, and we were planning on going to some lawn sales for the first time in about a month, as that is how I make my living, and we haven't been able to. She started screaming just before we were going to go. We had planned to have William babysit,but we don't leave her with him in that state, so we took her. Huge mistake. She cried less intensely for the first few, got a tiny bit happy in the middle. Then the last one. It was on a dirt road, which you would not think there would be one of in the middle of Jamaica Plain, but there is. It was very hard to get to. As we went down the road, Janey started screaming. I don't think anyone could picture what her screams are like unless you've heard them. They are the scream of someone being tortured, someone in horrible pain, someone insane in an asylum. They are impossible to ignore, impossible to stand, but we have to, many hours a day lately. I tried to get out and go to some of the very good sales. Tony stayed with Janey. She was screaming so loudly I heard her all the way down the road. I came back, to say we just needed to go. Tony had her out of the car, trying to calm her down. Her screaming was so distressing that people were literally crying, trying everything to help her. They offered her water, milk, candy, anything she wanted from the sale. We explained (over her screams) that she was autistic. They wanted to help. I wanted out of there, I wanted to go home and never leave the house again. We got her in the car and came home. She is screaming now, while I write this. This in ON medication, the useless medication that has not helped a thing I can see.

I am at the end of my rope, but I can't let go, as there is nothing there under the rope. We have no choice but to keep on. We love her, we would do anything for her. But nothing works. Nothing. Nothing.

Last day of school

Today was Janey's last day of school. Not much will be different next year---she will be in kindergarten again, in the same room, same teachers, same therapists. Which is a good thing---I love her room, her teachers and mostly her therapists. I hope next year is the year it all comes together and she starts learning. We have been getting a lot of progress reports, and they do get a little depressing, although everyone tries to be cheerful. She met really none of her goals. The main progress this year has been that she will wave or say bye and once in a long time, hi, when greeting or leaving people. She can do fairly well tracing a straight across line or an up and down line. She counts pretty well, at home more than at school. She will spell her name, again, more at home. Sometimes we think she knows the letter "A". But the other things, that they call Readiness, are not really there---things like naming body parts, naming colors (although she will choose a color correctly when she is given two choices, sometimes), knowing letters and numbers, knowing shapes---well, it's very slow progress. Her talking goes up and down. Sometimes it seems like she's making progress, because when it goes down and then goes back up, it seems like all of a sudden she's talking more, but usually it's a return to baseline, or slightly less. The crying was pretty severe all year, at school and at home.

Her teacher gave her a big packet of worksheets we can work on this summer. I also bought a huge pile of workbooks, and we are going to have school time every day. Sometimes I see glimpses of the "other" Janey---the one that somehow would exist if she wasn't autistic, and I think she would be like me at that age---she seems to enjoy worksheets and structured homework. By this I mean she doesn't cry too much during it, and she caught on quickly to the table and chair I set up for her workplace. It think it's predictable and one-on-one attention. Teaching her can often feel like pounding my head against a wall, though. It can be very frustrating. The ABA she's gotten has been inconsistant and plagued with personnel changes, but her current ABA guy seems very good, and still, she didn't meet any of her modest goals there, like responding to her name 80% of the time. I don't think ABA is going to be her ticket out of all this. I have to hope, and I usually do think, that she is learning things we aren't realizing. There are those glimpses when she is rewarded with M&Ms or something when she can name amazing amounts of items, if she's in exactly the right mood. It's the analogy I've heard a lot---it's like she has a disorganized file cabinet or card catalog in her head. It's all there, but just almost impossible to access, and most of the time, she's isn't very motivated to try.

The medication seems to be a mixed bag. She is still crying a lot. When it got hysterical, we tried the higher dose for a few days, but that made her extremely tired and a little zombie-like, which is not at all what we want. So we lowered it back down to the lower dose. She still seems tired and quiet (she went to sleep at 6pm tonight) but not quite as much. Overall, I can't say it's been a huge success, except for those amazing few days.

Wish me luck with the summer. I dread it in many ways. But then again, I've dreaded summer my whole life, so I can't put that all on Janey.

Ideas for the summer

I turned down any kind of services for Janey for the summer, because it's easier in a way to have full days free to do as we want than to have them broken up several times a week for therapies. I'm hoping it's a good summer, but I've hoped that almost every summer of my life, and very few have been. I have never liked summer---it's my own little autism-spectrum thing---I don't like the lack of routine. I also hate the heat. So every summer I think up things to try to make the summer go well, and every summer they don't really work out. But I forget easily, and I'm an eternal optimist, so I'm doing the same this summer.

The main thing I'm thinking is to get Janey out of the house every day as early as possible. There's a lot of reasons for early---I do much better in the morning than the afternoon, it's less hot, it's less crowded, and I think Janey is happier if she's a little tired out for the afternoon. I was thinking a lot of outdoor things---the wading pool which is newly renovated near here and is almost like a mini water park, various parks, beaches, walks, etc. I think if it's just the two of us, I can follow her pace and she will be more relaxed.

However, this Sunday I gave it a try and took her to a big open park. I let her take the lead and do what she wanted, but she wasn't very happy. She was halfhearted on the playground equipment, although we were the only ones there. Then she asked to go back to the car. On on the way there, she did finally get a little interested---I took off her shoes, which she always wants, and she sat down in a grassy field and just looked around. Then she ran a bit, and went on an empty soccer field and walked on the white lines like they were tightropes. We picked a few clovers, and just sat around. I hoped it would relax her and let her know I wasn't pushing for any certain activity. She never really seemed to relax, but maybe next time.

There were those few days after she first started the medication that she seemed connected and relaxed. She would smile and look actually happy. Now, again, not much. Tonight she was a little happy lying down for bed. She has a quilt she calls her special blanket now, and I sang her a song to the tune of "Clementine" about her darling blanket, and I saw a bit of smiling. I wonder if the world just seems so overwhelming and perplexing that she feels she has to be on guard at all times. I hope someday she makes enough sense of it all that she can relax more.

Tougher days again

Either the medication only worked for a few days, or Janey is just having a tough time enough to overcome its effects. Today there was a lot of the hysterical, screaming, ear-covering crying. There were also some good times when she was calm for a while, but by the end of the day, it was all the screaming. She had done very well through Wednesday. Thursday her cousin was visiting who I rarely get to see, and I think she was upset she didn't get my total attention, and she was fairly fussy, although when I told her we would walk to get ice cream in the afternoon, it was really nice---she cheered right up in anticipation even though it was about a half hour before we got out the door. Yesterday there was some of the severe crying, and today the lots of it again. We gave her the doubled dose tonight as we have been told we could if the smaller dose stopped working. But I'm not going any higher than that, so if this stops working or doesn't work, we are back to square one---I won't keep her on medication that doesn't help. It was great the few days it worked---seeing her smiling, calm face so much of the day. She seemed in despair tonight. I can't reach her when she's like that---I try everything on earth---singing, rubbing her back, talking in a calm monologue, distractions---nothing helps. Ignoring her works not at all. I feel so helpless when she cries so hard and I can't help.