Christmas/end of year

The end of the year always gets me thinking about progress, and wondering what kind of year it was for Janey. I can't say that overall she made much progress this year, which is probably why I am feeling pretty low today. Her talking isn't better---it's maybe a little worse, except for the rare times she goes on one of her talking frenzies, which is usually when reading a book to herself (she doesn't read, but she tells the story) or when singing to herself. She isn't that much happier, although we are getting better at knowing what is bothering her, or at least we have a list of things we check now---is she hungry? Bored? Tired? Constipated? I think I figured out she is tired much more easily than we realized, and she is going to bed between 6 and 7 most nights. She is in a wonderful classroom and getting a lot of very good support, but I don't think it has really shown itself yet. One area that seems a little positive to me is her interact with other kids. A few mornings when we got to school early and she was playing with kids outside the school, she seemed much more at ease, smiling and laughing and obviously very happy with them. I observed a few other kids there I know are on the spectrum, and the difference was quite obvious. It goes along with me sometimes thinking she isn't really autistic, but something similar. We had a lot of testing done through a study we joined, and that was very depressing in terms of showing her abilities on a testable scale---she is most certainly at least moderately retarded according to that. She hasn't learned letters, numbers, colors, shapes...all the things I've been wanting her to learn for years.

Christmas brings sad feelings to me in a way. Every year I tell myself that maybe next year, she will be able to anticipate Christmas, will be eager to hang her stocking, will understand what presents are, will ask for things....just doesn't happen. But she was mostly delightful this year. She loves carols. I played a carol CD in the car every day for a month and a half, and she learned most of them. One day, when I played the Halleluiah Chorus, at the end of it, she clapped loudly. I would look at her in the rear view mirror during the songs and see such sincere happiness in her eyes. I felt like it was a time we really connected on the same level. On Christmas eve, she came up to me and said "I want to go to the streets of Bethlehem". I know she didn't understand what she was saying, but I think somehow she connected the holiday with the songs, and heard that Bethlehem was a theme. It certainly brought tears to my rather non-religious eyes.

I think we got a little more accepting this year. I think we realize she isn't ever going to be exactly like other girls, but she is a wonderful girl, and if we work on figuring out what makes her happy and on understanding her needs, all of us will be happier. Best wishes to all for 2010.

Surprises from Janey's mouth

We have to be so careful with everything we say, because although Janey doesn't say the things we want on command, she listens to whatever we say to find words that have a ring she likes to them. The other day, Tony was telling a story about what some women said when he went out with a bunch of people from his high school class. They were describing themselves in high school, and used a colorful phrase. Janey was somewhere around, but gave no indication of listening to the story. However, this morning I was still in bed, and she came over and looked me in the eye and said "Crazy b*tch". It was a bit startling, to say the least. At first we felt worried, like perhaps she had heard that from someone talking to her being mean, but then we remembered that conversation. But how she realized it was a phrase that could shock, and why she decided to use it on me---who knows? Yesterday she made it through about half an hour at the buffet restaurant we went to for Thanksgiving, then I drove her home before she could freak out and ruin many people's meals. On the way home she was crying, and I asked her what was wrong, more just to make conversation as she never will say. But this time, she said "Willy is a naughty boy". I've never heard her call William Willy before, and I've never heard her say naughty, and I don't think William did a thing naughty during the meal, or really interacted with her at all, but somehow, that was her answer.

Long Week

The last week was fairly tough. Janey was having a bad week---awake in the night crying, not talking much, upset all the time. Things weren't going well at school either. Finally Friday I kept her home, just to give the teachers a break and to let her do nothing all day. It seemed to break the cycle a little. The school called mid-day, actually the woman who is her ETF, to talk about how she was doing. They all had been concerned about her mood swings, and I had finally mentioned something about it in a note to school, and now they all wanted me to call Dr. Marshall, her pediatrician, to ask him about having her evaluated for bipolar disorder or manic-depression. I did call him, although it was a hard call to make, and I have numbers to call tomorrow of two psychiatrists. I have thought deep inside for a while she might have something like that, but it's along with the autism and the retardation, so it's going to be hard to diagnose and treat if she does, and I am still not feeling very up on medication, which confuses everyone as I've always been someone that believed in medication. But Janey is only 5, and I have had some bad experiences with drugs I felt were carelessly prescribed, including the Aldomet during my pregnancy which I truly feel is the cause of many of Janey's issues, if I might be totally honest. Also Freddy's racing heart and possible drug induced Long Q-T syndrome after his bad asthma attack. So I am not going to trust a doctor on medication unless I really look into it quite a bit first. And I also don't know how it can really be separated---does she get upset because she can't explain what's wrong? Can she not explain what's wrong because she's upset? I feel sometimes like people want other people on medication because it's a way to feel like something is being done, and if you don't do it, they can kind of say to themselves---"Well, she won't let them give her medication, so she has only herself to blame if Janey is that tough"---which is hard on people, but as I've said lots of times, here is the only place I pour out my heart about autism issues.

Then yesterday we got a Fex-Exed report from the Mass General study we have been in, about Janey's testing. Talk about a downer. Pretty much, she tested as low as you can test on almost every aspect they tested--- less than the 1st percentile. I think they were using a test for "normal" kids her age, and it really couldn't even test her, she was too low functioning. Even areas like her receptive language that I had thought she did fairly well on, she really didn't. It was a little bit of an eyeopener. It is making me think we need to rethink how she is being taught and what our goals should be. I am starting to think her learning things like colors and numbers and so on is not really a realistic goal. I've thought for a while that her speech is a little deceptive---because she does talk, but mostly in set phrases and delayed echolalia, people think she has more potential than she actually does. I think she talks as much as she does because we are all huge talkers, and that is where she gets constant stimulation---verbal areas. If it weren't for the residual speech she has, I think she would be seen more realisticly---as a child that probably is moderately retarded and needs to mostly learn life skills. And I think she could do well learning those, and perhaps someday some very basic academic skills.

I am facing the things that are toughest for me---being sure of my own convictions and not being swayed by the disapproval of others of the routes I might choose to take with Janey. I know that I know her better than anyone, I love her more than anyone except Tony, and I want what is best for her. So why is it so hard for me to just be sure of myself in terms of what I choose to do with her? No-one else lives with her day and night. If I ever have enough belief to say prayers, it will be prayers for the courage of my convictions.

When we really connect

I love it when I feel like Janey and I really connect, really share a moment together. The best time for that is in the car, when I play music. I made up a CD of Christmas songs, even though it's a little early for that, and prepared for her to freak out the first time I played it, as she usually does, but instead she was so happy. None of the songs were totally new to her, which helps. I look at her in the rear view mirror when she is enjoying music and we look right at each other and smile. I feel like it's one of the few times we connect with each other without having to talk. When we got out of the car, she was already singing "Hark the Herald Angels Sing". Of course, tonight she got singing it again and got "stuck" on it, something that hasn't happened much late, when she is singing something and can't stop although she obviously wants to, and she get more and more upset.

The other night, she asked me for a necklace,which surprised me as I didn't think she knew that word. I gave her one and she put it on and said something like "Oooh..." which doesn't sound like much, but she said it in such an engaged tone, exactly like a woman would say that if she put on a dress that looked just right or something. She was so happy in such a "normal" way. She went and looked at herself in the mirror for a long time. That is an area where she is probably more mainstream than me. She loves to check out her clothes, hair, accessories, in the mirror, and turns around to see how it looks from all angles.

She gets very upset every day right when she gets home from school. I remember my mother saying my sister used to do that too, like letting out all the tension of the day. I try to be understanding and have food ready and give her all my attention, but I think she needs to freak out a little anyway. I would not think of school as being tension-filled for her, but I guess it is.

Steps forward, steps back

Janey is doing a lot of screaming in the mornings again. I have no idea usually what in the world is wrong. Something sets her off and she just cries and cries. I try the whole routine of asking if she wants different things, holding her, etc, and finally just try to ignore it, which is what I have been told to do. It goes against my nature but seems to work better than anything else does.

She has done some good talking off and on lately, though. Yesterday in the morning she said "I want my coffee and I want my whipped cream" I don't think I've heard her use a compound sentence like that before. In the car after school yesterday, she was looking at some book and I said "What are you reading?", the kind of question I ask a million times and she never answers. This time she said "What are you reading? You can say 'I'm reading a book'" Then said "I'm reading a book" It was in a rehearsed voice, and I am sure she learned that kind of response at school, but it was nice to hear.

On and off day

We drove out yesterday to meet my friend Judy, who I had never met on person before, just on the internet. It was wonderful to meet her. I was worried about how Janey would do, as she was going to meet Judy's 3 year old granddaughter Jamie. Overall, it went well. Jamie was a wonderful talker and very advanced, which is nice to see but also always a little hard to see, but she had an outgoing personality and just refused to take "no" for an answer in playing with Janey. They ran around together, danced together, did well without Janey really talking. It was good to see. But then on the ride home near the end she went into crazy mode. She didn't like what we got for dinner, and wanted "cheesecake" which can mean many things---sometimes really cheesecake, other times little packets of cheese and dipping crackers. She just started screaming for it, and I mean screaming so loud you could not even hear yourself think, and thrashing in her car seat and having one of the worst tantrums I've ever seen her have. I really thought she would hurt herself badly. It was awful. We did our best to ignore it, as anything we tried to do just made things much worse. Eventually she wore herself out and was okay. I think being social tires her out so much and makes her so taxed that she has to decompensate. It was a long drive.

Planning skills

Janey loves whipped cream, and we sometimes give her a little mug full (like an espresso cup). Three times today, she got the whipped cream out of the fridge, found a little mug and found a spoon, and brought them all to me. I was impressed---it seems to me like that requires fairly complex thinking and planning ahead, which I wouldn't have guessed she had as much of as that shows.

Sunday was very exciting, as Janey ASKED to use the potty, sat on it for quite a while, and actully finally did pee in it! First time EVER she has peed in a potty. And it was more impressive it was her idea. Maybe I should have followed my instincts and let potty training be more driven by her. However, I certainly wouldn't call her ANYWHERE close to potty trained, but it's a step in the right direction.

We never know where she thinks these things up

When Janey does speak in a clear sentence, it's often something we have no idea where she gets. This morning she said "Don't stick your thumb in the ice cream---it's NOT funny!" She also said "I want to go on the merry-go-round". The other day she said "I can't see the far-away things. Please help me" These sentences comes out of nowhere and are in such contrasts to her usual talking, which is often just sounds---lately she likes GaGaGa. Or how she talks when we ask her a question and insist on an answer and she takes the rare route and does answer---often then it sounds garbled and like someone with speech articulation problems, which she really doesn't have, at least usually. Her talking is so mysterious. And then there's the snatches of songs---often songs I've played in the car. Last night, over and over she sang "Making lazy circles in the sky" from Oklahoma. Her taste in music is very specific. She likes show tunes usually, but not super emotional ones, she likes songs with a clear voice and a clear beat, she likes dancing type songs but NOT disco---she can spot disco a mile away. Sometimes I think she likes a song so much she just can't take it. Last night I was playing "On the Road Again" and she was thrilled, clapping and happy and smiling, but then started to scream. I turned it off and she was saying "On the Road again ON! On the Road again OFF!" I figured out she liked it but it was just too much excitement right then. She is interesting to figure out, but when you live with her all the time, it goes from the theoretical to the practical and gets very tiring.

School not bad

Janey is doing fairly well starting kindergarten, at least in terms of not crying all day. Everyone seems pleased with how happy she is at school. Tony and I went to the open house last night and her teachers went over the class schedule. It sounded great---an amazing amount of terrific learning centers, lots of music, etc, but both of us were sitting there thinking---great, but how much of this is Janey going to understand? Very little of it. But she actually is out of the room a lot, getting speech, OT, PT, ABA and soon music therapy. So she gets the regular class situation but lots of extra help too. The question is, does she learn anything? I have to admit to myself that her speech is not improving---I would say it's worse than 6 months ago---very few sentences lately, mostly one or two words. Some things are better, what I would call self-help skills---she jumps into her car seat easily, she is so good at using her hands to play with things, figure things out. Her eating is pretty good. But talking...not so much. It is discouraging. Sometimes it would almost be easier if she had never talked much. But there are those long sentences we've heard at times, and complex ones. I know when she was 2, she said something along the lines of "I was scared by that Sesame Street show on the internet Freddy showed me" (Elmo's got a gun parody) It kills me to think of that. How did I let her slip along without realizing it? Was it our long trip? Did something physical happen? Does she have that Landau-Klippel syndrome even though no seizures showed up on the EEG? What is wrong?

Worrying

I didn't sleep well last night, just worrying about things. Janey got mixed reviews on her first day. The special ed teacher said things went well, some crying, but not severe. The ABA woman wrote that Janey had a rough time, though, lots of tantrums and screaming and biting her clothes. She seemed spacy when she got home. That is what Tony and I were noticing lately---she seems more out of it than usual. I couldn't sleep and finally woke tony up and we had a good talk about all of it, about how we are going to try even harder to engage her. It's easy to say we will just put everything else aside, but then there's the little matter of having 2 other kids who need us too. Freddy is just starting at Latin and the homework is starting to pile in, and William has his usual anxieties and oddities. The housework is building up, and our finances are tough---back to school was VERY expensive this year---the school supplies the boys needed were not cheap. Yesterday I saw in Janey's class almost everyone is wearing a uniform (blue or white top, blue or khaki pants) and I just don't have that for Janey. She is actually low on clothes, to my amazement. I had to finally last night make a Lands' End order of some different blue tops. She doesn't need to stand out even more than she already does. But she eats her shirts now---chews holes into them within minutes. I can't afford new clothes every day. It just all starts to close in after a while.

Off to kindergarten

It's the big day, the day I must admit I've been waiting for since December 26, 2003 (when we realized we would have a 3rd child!)---all three kids are in school all day! The morning went fairly smoothly. Janey had some cranky and upset moments this morning, but that's not rare. When we were getting in the car, she said "I want to go to Christine's house", a place she loves to go and I guess something she wanted to do more than go to kindergarten. I said "Are you a little nervous?" and she said "A little nervous, Janey". Once she saw the school, she seemed happy, though. We met 3 kids who are new (weren't there for K0 or K1) who will be in her class (all seemed regular ed) and talked to lots of old friend teachers. This marks the start of my 10th year with a child at the O'Hearn (except for now it's the Henderson). It was great to be able to drop Janey off with no qualms. We barely even stayed in the classroom---I thought I'd make room for new parents who didn't feel as confident as I did. I am excited and nervous for Janey. I know she will chew her shirt, get wet or dirty from her diaper, freak out about things, etc...but I know it will all be handled by the school, and that she's in a place she is loved and cared for.

Other autism blogs

I was reading a few other autism blogs, and it was depressing. So so so many kids that are diagnosed with autism seem so much higher functioning than Janey. It almost makes me mad---I want to say "That isn't autism! That's just a quirky kid! I HAVE one of those---it's nothing like having a kid that REALLY has autism!" But of course that is mean and unnecessary. I just felt upset reading about kids that can read at 5 and have interesting insights and so on. Janey doesn't have any interesting insights. I really wonder if she will ever read, or even learn her letters. Her latest hobby is spreading the content of her diapers on things. She is talking mostly in Kipper dialogue. She is not getting better.

The other thing that bugged me is how literary the blogs all were, like they were a contest to seem intellectual. I can write as prettily as the best person, but that isn't what I see this being for, but I have to remind myself---that's just me, and I am writing this FOR MYSELF mainly. I just wish I could find someone like myself, with a girl with autism who is fairly low functioning. Or a boy. Someone who hasn't bought totally into any one philosophy and is skeptical of all treatments, someone who knows the difference between mild Aspergers that might turn into no Aspergers (which was my son William's story) and hard core autism.

This is a nasty post. But it's how I'm feeling right now.

Kindergarten tomorrow

Janey starts kindergarten tomorrow. We went to an open house on Thursday and as always after spending time at the O'Hearn (now the Henderson), I felt very happy. Everyone at all who is involved with Janey came in Room 5 to see us, and to welcome Janey back, and to talk about their plans for this year. I couldn't ask for more in that way. It's one thing that's good about inclusion. If she was in a class of all autistic kids, she would not stand out as much and not get as much attention and positive interactions. Of course, she would be getting more specialized education, so it's so hard to know what is best. But I love the feeling of knowing that she is with people who adore her all day. In my gut, I feel like that is the most I could want. I know there are at least 6 or 7 people there who love her like a daughter. I like her new room. Most of the kids from K1 I wanted to have with her are there, and a few that I didn't, aren't. It's just a nice room. She will have Ms. Samuels as her regular ed teacher, who Freddy had too and who I really like, and Ms. Elmaus as her special ed teacher, who I don't know well but I met and liked a lot too. Still, I have so many worries. I hope she learns. She hasn't learned much yet, in terms of things concrete that you could test for, like colors and numbers and letters and shapes.

She did some good talking today. She wanted us to play catch with her cat, a cotton knit cat we tie up into a ball and throw, so she said "I want to play catch with my kitty, Janey", a nice long sentence. She almost always adds Janey at the end, sort of her own tag to let us know the sentence is about her.

The sudden rages are getting more and scarier, though. She will be perfectly happy, and then something happens that isn't what she wanted or expected, and she screams, bits things, cries---all this happens within a minute. I think it will help if she can tell us what is wrong, although we might not always be able to fix it.

I am glad for little things. For years, she would bring me yohgert to have me feed her, and I would say "I need a spoon, get a spoon" and of course she wouldn't. Just the last few weeks, she brings the yohgert WITH a spoon. It finally clicked.

Summer is STILL almost over

It seems sometimes like summer will last forever, which in my mind is NOT a good thing. I really have never, ever liked summer, and I still don't. I don't like the heat, the unstructured time, the isolation it seems to bring, any of it. I am always happier when things are in a routine.

William started high school on Thursday, and Freddy will start Boston Latin School (7th grade) this coming Thursday, and Janey will finally start kindergarten on the 14th. I hope the year goes well. She is in the class I wanted her to be in. More and more I can't really picture her fitting well into a classroom routine, since K2 will be a bit more structured than K1 or K0. Maybe she will surprise me. I worry about her biting at school, or crying until they don't know what to do and call me, or wetting through her pull-up, or all sorts of things. I hope she learns and has fun. I am very much looking forward to days to myself, getting more work done, etc.

Janey used the regular potty today, not to pee of course. We have more warning of the other bathroom need. Tony got her a insert seat and she used that well, but of course we put her on the potty, it wasn't like an independent use.

She has starting eating all her clothes, like William used to a long time ago. Her tops are full of holes.

She has gotten into Barney now, and likes him more than Kipper. I am already tired of the few videos we can find from when the boys were little. I guess it fits into her likes---lots of singing and dancing.

Summer's almost over

I haven't written much this summer. It's been a tough summer in some ways I won't get into, but not terrible. I do have to say (but I've said this before and not done it) that I will NEVER have a whole summer without camp/work plans for the kids again. It's way too long. I think everyone is ready for school.

Janey has mostly been happy lately. Not as much crying as some times in her life. The boys think she is talking more interactively. I am not sure, but maybe. Much of her talking is about what video she wants to watch, and where she wants to watch it, or telling us she wants an M&M or chocolate milk, and where she wants them. She loves being around the boys most of the time, and a few times lately when we were all just sitting around doing not much (which I do think we do more of as a family than almost any families out there) it just struck me that she really seemed just like one of the family, which of course she is, but before she always seemed first like a baby, then like a toddler, then like an autistic sensitive preschooler, and these few times she just seemed like one of us hanging out. That was a good feeling.

I have been thinking a lot about if she doesn't "get better". I still have hope somehow this whole autism thing is a big mistake, and some day she will just decide to talk more and learn easily, and then we will all laugh over how everything thought she was autistic. But it might not happen. And it will be okay. She will be who is she, and we will figure out what she likes to do, what makes her happy, what she can do. She will live with Tony and me, and the boys will hopefully help out and watch her sometimes so we are not totally landlocked, and that will be it. And I will be glad she is verbal and beautiful and can walk and is healthy. That's me at my most positive. I am not always thinking that way.

Mania

One thing Janey does that I haven't seen mentioned in anything I've read about autism----she has manic spells. When she is in one, she talks non-stop while running back and forth around the house. It's when we hear the most talking, but it's a long monologue without any connection to much. She tells stories, sings whole songs, recites nursery rhymes, lists things, and just never stops. It's very, very odd to see. Last night she was in one. She started out talking about candlesticks, she is a little obsessed with Jack Jump Over the Candlestick. Tony put down a little candle for her (not lit of course and not in a stick!) and she jumped over it about a million times. She sang the entire patriotic sing-along the Pops did for the fourth, she talked about Ravenpaw a lot (Maryellen's cat that she is also obsessed with), she told Kipper stories, she jumped around crazily, on and on. She does more talking during one of the those times than she does the entire rest of the week. It makes me know the words are in there someplace, but just don't come out on demand.

I have started pointing my finger in rhythm to certain sentences she needs to use, like "I want to watch Maisy", with a point for each word. It seems to help her to say them.

A phrase she often adds to the end of sentences about things she wants is "to feel me better", for example, tonight she said "Daddy, I need a blanket to feel me better".

Everything I read says talking at all at age 4 with autism is a good sign. But her talking just really never seems to progress, it often goes backwards.

One encouraging time today---she wanted an M&M and I said "what color?" and she said right away, "Blue". So at least she understands the category of colors.

Getting tired so this is getting random!

Tale of a tantrum

Janey has so many tantrums and crying spells, they all blend together. So I thought I'd pick a random one and describe it. Tonight she asked to watch Kipper, one of her favorite videos. I had just turned off another video because she kept crying during it. I have decided to do that, to take her crying as communication she doesn't like something and tell her that---"Oh, you are crying, you must not like that video, I will turn it off for you". I gave her lots of attention and talked to her about things, and she calmed down and asked for Kipper. I put it on, and she watched it happily for a bit, then got to a certain part and went and asked Tony for "a green flashlight". She had been playing a lot today with her flashlight, which has a princess theme and sparkly things. We don't have any green one, so we assumed she meant her regular one, and gave it to her. That set things off---somehow that was very wrong. She immediately started screaming and stomping her feet hard, and it escalated to hysterical crying and biting of the couches, and pounding her feet so hard I am sure it hurt. We all stayed calm as we try to, and tried to ask her what was wrong. I tried "interpreting" a little and said "That wasn't what you wanted. You didn't like that flashlight. Something was wrong. You are very angry". I don't know if that does any good but I hope it gives her words. She cried for quite a while, and finally I lay down with her on my bed and told her it was bedtime. She seemed to relax some, then got up and asked Tony for a bottle. Now she is lying with her and hopefully on her way to sleeping.

We try to figure out what triggers these tantrums. Sometimes it's hunger, but she ate well today. Sometimes it's tiredness, or a stuffy nose, or our lack of understanding what she wants. I know it's frustrating for her, but it is for us, too. We all walk on eggshells so much of the time, and the boys so often just have to wait for what they need while we try to keep her sane. I am getting more and more tired. I am too old for an 1 year old, but that is what I have, essentially.

ABA---progress?

We are a couple months into ABA now. I am really not sure what it is or isn't doing. I love Christina, and Janey is more cooperative during the ABA than I ever thought she would be, but I don't know if much of it is carrying over. She is talking about the same amount as ever, I think, which isn't that much. She has started using more long phrases copied from videos, probably because she has gotten much more interested in videos. I do see that as progress a bit, as I think before she couldn't follow them enough to be interested. She uses the phrases appropriately often, such as coming up to me when she wasn't sure where I was and saying "I was looking all OVER for you!", or, when she was upset and wanted comforting, "I will read you a story" as Kipper does to a gosling that gets stuck in his house. But it's still so hard to get her to ask for things she wants, and she still almost never answers questions. Her basic knowledge is still so limited---I am not at all sure she really knows any colors or shapes, consistently anyway. She still has days when she cries all day pretty much, but also a lot of days where she is fairly happy. She has been asking to go to school a lot since school ended. I think she has absolutely no concept of time, and it's impossible to explain to her that it's summer and we will go to school again after the summer.

She often anticipates my answers and puts them in herself---like she will ask me for a cookie and then will say "We ran out of cookies". I think that is a a good thing---she is thinking about what someone might say back to her, but also it could just be repeating a phrase she often hears.

When she is happy she laughs non-stop. It's almost like the non-stop crying in reverse. It's less hard to hear, but still sometimes quite inappropriate.

She is so beautiful. It shouldn't matter to me, but it does. She is just stunningly gorgeous.

Crying off and on again

Janey went a while without the awful crying spells, but they are back a bit this week---just endless crying for no reason we can figure. She is waking up in the night again too. The first month with the ABA seemed really like a breakthrough---she was talking more and more social and happy, but the last week I hope is just a little break in the progress. She is repeating lines from videos more. I wish I could get a handle on her talking, understanding it. It's very odd. She says very little original when talking to people, but there are times when she is playing on her own or reading a book to herself that she talks tremendously well, with stream of consciousness long sentence and lots of expression. So there is a way she can do it, but just not socially or on demand. It is painful to watch her when she really wants to tell me something that can't be said with a set phrase. Often she will just resort to "hold my hand" and will take me where she wants to go. Today she said "I want to go to the ice cream store and get an ice cream cone". She meant Ron's, down the street, and we never get a cone, always a dish, but it was a good original question (I didn't have any cash so we didn't go, usually I do try to do what she asks if it's possible at all). I guess it bothers me as she gets bigger how it's so obvious she has some sort of disability. When she was littler it was acceptable not to answer people and to act a bit differently, but now it isn't. At the school, although I've certainly never told all the parents her diagnosis, they all seem to know she's autistic. That shouldn't bother me, but it does.

IEP, ABA

Janey had her IEP meeting today. I guess it went well---as always, everyone loves her, all her services are staying the same or getting a little more, etc. But it seems like she is making so little progress. Any progress they mentioned was so tiny---learning the routines a tiny bit more, sometimes talking a little bit more. They try hard to be positive but do have to mention things like how her mood can vary wildly and that has a huge effect on how she does each day, and how no-one can tell what will make her happy or sad. They all mention the music, and they are going to try to get her music therapy. I know they all love her, and that is great, I just wish she was learning more.

The ABA is better than I had thought it would be. Christina is just wonderful. She is really gifted. She is so firm but caring, and really expects a lot of Janey. But hearing her report was a little discouraging as things I thought she had pretty much mastered it still sounded like she had a long way to go on. I know it's all a slow process. But the years are going by. Janey is almost 5 now.

Janet, the speech therapist, noted all the things she sometimes does well saying---lots of pronouns, plurals, vowel tenses, etc, when she is in the mood. But when she isn't, she can be basically mute.

I wish I understood her. Sometimes I think I am starting to, but then I am not. Tonight when she was upset, she said crying "I get sad. I get tired. I get angry. I get hurt. I get jealous" I guess that covers it.

ABA

I want to feel hopeful about ABA, but so far I don't really. I know it's early in the process, but I feel like it's not really going to work, that is my gut feeling. Part of it is how rigid it is. Christina, the woman who does it, is great and it's not that she is rigid, but the whole set-up is. Janey has to sit, has to do trials 10 times, has to do just as she is supposed to, to get credit, and it's like pulling teeth. Janey has tremendous stamina to not do things she doesn't want to. She'll just sit there staring into space for ages instead of asking for an M&M like she is supposed to. Or she will sing a song instead of looking at the cards she is supposed to match, or she'll just toss the cards down any old way to shut everyone up. I think she could do many of the tasks just fine, but she won't on command. Christina said too she thinks Janey knows far more than she lets on, it's just getting it out of her. She hasn't thrown any real tantrums during the ABA yet (she has had it about 4 times now) but today she was not at all cooperative and I hope Christina wasn't discouraged. Janey will giggle and giggle to try to distract people, or will climb in their lap, or sing a song, or act very cute. I realize she's figured out all those ways to get out of having to do things. I think it works a great deal of the time at school, and probably at home too. It's just all so tiring. WHY is it so hard for her to say the words she knows, or to show the knowledge she has? What makes her not want to cooperate? What have I done wrong?

Depression

I think maybe I am really getting depressed. It's probably lack of sleep, and just the daily grind which isn't just Janey, but many things. I am crying at the drop of a hat and just feel completely overwhelmed. I found this link which explains part of what I am feeling.

http://autism.about.com/b/2007/04/30/depression-in-mothers-of-children-with-autism-whats-your-take.htm

and has a lot of other mothers talking. If it were just Janey I think I could handle it, but it's also money issues, dealing with Freddy who isn't happy lately and can be very tough at times, making sure William gets the time he needs, worrying about the house, even worry about Schemer the cat who is not doing well. I really don't think most people know how hard life is feeling for me. I don't like to say how hard it is, that is probably why. I believe in being cheerful and making the best of things. I don't even know what would help at this point. Nothing would help, I don't think. No-one can watch Janey, no-one feels up to it and I don't blame them---it's too hard even for a whole school to watch her sometimes. Tony is at work so much of the time. I don't like to give in to self-pity this way. But this is my place to write, I guess, if others read it it's because they want to, so I will try not to feel guilty about even expressing my depression here. There is no-one to talk to who understands. People can say "Oh, I know how hard it is for you, I wish I could help" but none of them really can help. People have their own lives. Seeing a therapist is not going to help, unless they plan on coming here and giving me a break now and then, and on giving me some money to get us out of debt. Bills yesterday and a new $300 worth of medical bills just for Freddy's last illness, plus a hit of $70 at the pharmacy yesterday for his drugs. I think a lot of people would be stressed just by Freddy's asthma, and that doesn't even merit much thought, except to make sure he's okay each day. Just one extra thing.

Oh, well, have to get Janey to school.

Trying things

We are trying hard with Janey to work out a strategy about the crying, which is just out of control and totally awful. I bought some M&Ms, and I tried all morning to catch her not crying, and give her one when she wasn't, and comment on how proud I was of her not crying. It's hard to even find a time when she isn't crying. We went to some lawn sales, and she held it together if Tony was in the car with her, but he tried to take her out at one, which she used to love, and she just went hysterical. Of course everyone talks to her and tries to help, but that just makes her madder, and it is so embarrassing and awful. It's why we take her out less and less. When she is home, we are going to try that if she cries, she has to go in a certain spot and just cry there. It's instinct to comfort her and that is what we have done for years and years, but it's not working and we are so frustrated we just have to try anything. For the first time ever, William said he was fed up with her and how she ruins everything. He has never once even gotten impatient with her before. I felt for him and told him I did understand how he could feel that way. I just hope things get better soon and this is not the start of a huge regression.

Bad days

The last few days have been really awful with Janey. I am having a very hard time staying positive. It's been vacation week, so her routine is off, and we didn't have a lot planned---the boys really like to do nothing and relax during vacation which I can understand, as they work hard at school. Tony was home the first 3 weekdays, but again, we didn't do much, not even with him home, he needs to relax too and he was doing just that. Janey started having real fits, I mean worse than ever, and it's always been bad when she has a fit. But these were like 2-4 hour fits, just banging her feet and screaming and tensing all up and crying without stopping. Last night was the very worst, she screamed from 8pm until at least midnight. I think some of it was gas pains as she kept wanting her diaper changed. But a lot of it was just being upset about being upset. She repeats phrases like "It's not dark in here" which I have no idea what she means. I see no light at the end of the tunnel. I am tired all the time, so tired I could collapse. I am getting nothing done, I've practically given up on ebay and Amazon and things, I just don't have the energy. And we got a letter a few days ago saying basically the state is no longer going to offer any autism services, they have no money for it. So the little thing we were getting, free after school, might end in June, and the swimming. And no hope of any respite money ever, not that we were getting any. I think people like to think if you just look, there is all this help out there. That isn't true. Most of the money and foundations and things you hear about for autism are for research or for very focused things, and not for really helping everyday schmucks like us. I dread the summer. I dread most everything the future holds, I feel like. I have no help at all, and Janey has again today cried a huge part of the day. I try so hard to be cheery and nice and upbeat. I bought her some Fisher Price toys today, I had to make myself get out with her and we went to ToysRUs. I opened them a bit ago and of course they made her scream and cry. She might like them some day but for now it just feels like I threw the little money I have into the trash.

Just had to vent here where no-one really sees it much I don't think.

Tantrum and then talking

We had a strange time with Janey today. She was having a severe tantrum, mostly because we wouldn't let her watch her Maisy video when she wanted to, William was using the TV and he never gets a chance to, and we decided not to give in. She went completely crazy, banging her head, pounding her fist, screaming over and over "What the heck is going on?". We tried everything, and finally Tony said "Life must seem pretty awful for her at times" and he just started saying back to her "I know, what the heck IS going on? Why is everything like this? Why?" and really sympathizing with her. She stopped crying and looked at him hard, and then when all was quiet she started to talk in a way neither of us has ever ever heard her do---no repeated phrases, long sentences, like she really wanted to tell us something. It wasn't totally understandable (the words were, but the meaning wasn't). She said something like "That lady out on the street, she said GREEN, she talked about PINK, I got stuck, she said BLUE, she was telling me it, I was so stuck" things like that. I think maybe she was talking about when they tried to test her, or maybe tried ABA type things with her. We took it as her telling us she KNOWS those things, but gets stuck and can't say them. It was definately something about learning colors. Then she was very calm for quite a while, until she did get upset again later. It was very affecting to see.

Autism acceptance

Yesterday I had an experience which made me think a very lot. We went to a medical study at Mass General, and Janey was tested all day. These were IQ type tests, and also autism assessments. I felt like crying all day long, as I could tell Janey was "failing" badly. She refused to answer things I know she knows, she pretended not to understand anything said to her most of time, she wanted to just do laps around the room and chant things. After the day was over, I finally realized what bothered me most about the day. It wasn't Janey's "failings", it was the fact that I don't think anyone, me included, was appreciating what a wonderful kid she is. I wish she had been able to show her many amazing qualities---how she can sing so many songs, how she can melt people's hearts in a minute, how she is amazing and interesting and fun. She tried---she started the testing by going up to each person in the room in turn and hugging them and getting on their laps. It's something she does a lot, to connect with people, I think, to compensate in her way for her lack of being able to talk easily. She does what she can do. She enjoyed one of the tests, where they were having a pretend birthday party, and putting pretend candles in playdoh. She kept trying to go back to it all day, when the testing had moved on. I felt like crying later thinking about how she enjoyed that so much, and instead of enjoying it with her, we were hounding her to say what stupid pictures were, or make block designs or the like. When we got home, I spent hours just playing with her, hugging her, making her laugh at silly jokes only she and I understand, just looking at how beautiful and interesting she is.

I was prompted to do a search to see if there are other parents out there who just believe in acceptance of their kids. I found this website

http://www.taaproject.com/

I don't think it's exactly my philosophy, but it says a lot I like, especially how autism should not be viewed as a tragedy, and how they are very skeptical of the vaccine connection.

I have a lot to think about.

Not being positive

Not a good past few days, awful really. Janey and Freddy have both been sick. Janey seems better, but is incredibly fussy all day long. Yesterday she pretty much cried all day. I was at MGH for the autism study I enrolled in, doing testing, and she was with Tony. He didn't take her to school as she was just screaming and crying at that point in the day. She fell asleep for him and slept all afternoon. Never happens to me. I am more worried about Freddy. He missed the last 3 days last week, went back yesterday but it wore him out to the extent he can barely move. He is so pale it's very scary. He will probably stay home today and I will take him back to the doctors. There are days like yesterday I feel like I can barely make it another minute. This winter has been so hard. Janey is so tough so much of the time, and I feel like I can't be with the boys like I should, and Tony's hours are so long and he's so tired or pre-occupied when he is home. The house is turning into a pit of mess, we are financially practically going under and I have just not been happy for a long time. I try hard to stay positive but I am not positive and I can't see when I will get positive.

Crying at school more

Janey has had day after day of hysterical crying at school. Hopefully today she didn't, I didn't get a report. I went in to her room with her today, which they don't usually encourage but were nice about me doing. She seemed fine while I was there---I just wanted to see if there was some object or noise in the room that might be upsetting her. I was there for the circle. She was very tuned out except when they sang songs she knew. Then I went to talk to the nurse, who had called me a few times concerned about Janey. I re-assured her that Janey wasn't sick, just fussy, and that she was eating and sleeping fairly okay. Just all so discouraging. It was nice to be in the school a little and see all the people I like and know, but who knows what is going on. I was feeling better for a while but now again feel very low and depressed. The boys are hyper, the house is too small, we have no money, I am late on bills, Janey cries all the time---etc. I try so damn hard to stay positive all the time but it's very hard to do at times.

Crying at school

Janey had a pretty good morning, but got fussy at school time, however, not severely so. She was cheery heading off to school, and I decided once not to just go home and collapse but to check out a new nearby yarn store. I hung out there about an hour enjoying the yarn and people talking about knitting. When I got home about 2:15, there were all kinds of messages. The school had tried to call my cell phone and home phone, and then called Tony---Janey was hysterical at school, having a fit, and so they thought she was sick and wanted us to come get her. Tony had to leave work and was on his way to pick her up. When he got there, she was calm and fine, and they all said they were sorry.

I think she probably had the kind of fit there she often, often has at home, but not at school. It can be set off by most anything, but most often if you try to push her a little to do something she doesn't want to do. I had met the OT today, Miss Heather, and she was going to be working with Janey. We talked a little about how hard it is to teach her. I need to ask more questions about the incident, but my guess is that Miss Heather tried to get her to try a little harder with some task, and Janey freaked out.

I am feeling depressed over this, mostly because I simply can't survive if I can't count on a break while Janey is in school. My cell phone didn't ring somehow, and Tony can't be leaving work all the time. I feel like crying over this. I am sure it's not going to be the last time she loses it like that completely at school. I am sure they really did think she was sick, and the nurse even said she had a low grade fever---I bet she did, she works herself up so much. She was fine at home, perfectly happy. I feel funny taking her to school tomorrow as they think she was sick somehow, but I am going to, I think. Maybe now that they have seen her like that, they will know they can handle it.

Blocks

We've had blocks around since Janey was born, but I think today was the first day she ever noticed them. She has been building structures on the windowsill all day long, including houses with roofs and what she calls stations, and "big buildings". Just now she came over to me and said excitedly "You made a big building, Janey!" and was obviously eager for me to look at it. I got a picture of her pointing it out. It's wonderful to see her engaged like that. I have to use every ounce of self-restraint not to build with her, as I know that will be the end of it---it would set her off crying. I think I will try to get the boys to build with her tonight, as that seems to be more acceptable to her.

Random thought

Yesterday was a snow day, so I didn't get to see if they really did start ABA right away. Janey doesn't care for snow days or days off. I think she has a little bit of an idea what days are supposed to be school days, and she wants to go to school on them. It's similar to how the teachers say she knows what days she sees therapists at school.

Random things---we had to figure out a system to tie the refridgerator shut, as Janey opens it constantly and rummages for food that she eats a little of and then throws around.

Janey's new phrase to repeat all the time "Wait for the milk!" It's a quote of Tony when she was throwing a complete fit when she wanted chocolate milk and it was taking him longer to get it than she liked. It's funny how she picks up on emotion laded phrases and repeats them. She says the milk one now when she is getting upset and annoyed.

Janey is ending every sentence now pretty much with "Janey" ie "I need dinosaur cookies, Janey", "Teletubbies is coming up next, Janey". (Teletubbies being one of the many things she talks about but has no interest in, the biggest of which remains Sonic, who comes into nearly every conversation)

Janey's singing has picked up lately to a huge extent again. She is learning more songs all the time. It's always startling to hear her sing Black Sabbath ones she learns from William..."All that I can ask from you is a love that never ends..." sung just in tune. She knows the theme song to any TV show she's ever seen. It's not something I can show off as she doesn't do requests---the songs just come to her when they do. Certain ones do mean certain things---when she is very upset, she sings "When you walk through the storm" as I sing that to calm her sometimes. I think "When you're happy and you know it" means she's happy.

Janey is waking up, so I will stop randomizing.

ABA

Well, there is some news for all my faithful blog readers (of which I am not really sure if there are many, let me know!). On Friday when I took Janey to school, her teacher stopped me as I was leaving and gave me a paper, and told me to come in for a minute. It turned out the paper was the long-awaited ABA evaluation, and that one of the special ed coordinators wanted to talk to me about it. I went down to talk to her before reading the paper, and found out it was recommending 6 hours a week of ABA for Janey, and they wanted me to sign an amendment to her IEP approving it. So of course I did, before even reading the report. Once I did read the report, I found it to be both extremely accurate and quite heartbreaking. The woman who observed her is I think the head of ABA services for Boston schools. She really seemed to understand Janey well with just an hour of observation. Basically it said that despite 1 1/2 years of school, lots of therapy,supportive teachers and special ed placement, Janey is "not accessing the cirruculum in any meaningful way". So what I knew to be basically true, she is learning nothing. It listed all the things she couldn't do, which are all goals on her IEP---body parts, shapes,numbers, letters, etc. It said she seemed driven by inner stimulation. They tried to get her to respond to her name and she failed, responding 0 out of 10 tries (that is an ABA type thing to do).

I guess the services are supposed to start right away. I really don't know how they will fit in 6 hours of ABA in a 12 1/2 hour week of school which already includes 6 other hours of therapy. It shows how ridiculas a half day of school is for her.

The nice part was how thrilled everyone was she was finally going to get more help. The special ed lady, the teachers, the secretaries, everyone seemed close to tears over how they love Janey and how they want her to get more help. It really made me happy but also made me feel a lot of other emotions, like that I should have fought to have it be sooner, that they should have helped it be sooner, that I still don't think ABA is the way to go for Janey, but she needs SOMETHING I know, that I am so tired of all of it.

I also found out yesterday that Janey could go to a swim thing each Sat. now at the Hyde Park Y. They call it a social swim, but you have to be in the water with your child, and I can't see her socializing much while she is swimming. Regardless, we went today, and the whole family is invited so the boys get to swim too. It's a great chance for us all to get a swim even if Janey doesn't get socialized, and it's free. She swam today with 3 floaties and holding a barbel type thing "by herself". She does love the water as do all of us. The boys swim like fishes now. They look so graceful in the water.

Janey is singing more again. She sings all the words of Black Sabbath songs that William plays, and sings show tunes I play, and most any songs she's ever heard. She might not answer to her name, but the girl sure can sing.

Janey's physical and my talk with her pediatrician

Janey had her 4 year physical yesterday (about half a year late). All the health things were fine, she is growing slowly but steadily. But I decided to pin down her doctor a little more about his opinion of her---I asked him what he thought I should be doing that I wasn't, whether she seemed typical of children with autism to him, what his impressions were. He spoke carefully and said to him she seemed like a child with global developmental delays, with some autistic characteristics, such as her speech patterns. In layman's terms global developmental delays means basically that she is retarded, to use an old and now not correct term. And surprisingly, even though he said that on my birthday, I was not really sad to hear that opinion. It is pretty similar to my own opinion. She certainly might be autistic, but she is also quite delayed in many ways. She seems to have a great deal of trouble learning some concepts, and does not catch on naturally to things like routines or natural flows of life. I asked him about ABA and he said he wasn't really the person to ask, but usually it is not as effective with kids that are globally delayed. That went along with a good book I had read about how children with autism learn, that in some cases you just can't push a child to learn things they are not ready to learn, and often the only way they have of reacting to that kind of pushing is to act out, as they can't explain "hey, this is just beyond me right now, don't push me" She does have her areas of strength, certainly music and perhaps auditory memory, and they might really help carry her far, but I think she might always be delayed to some extent.

Another thing I did was insist he give me the report from her seeing the neurologist a whole year ago. It wasn't that illuminating, mostly it was just her observations of Janey and what we told her about her, but at the very end it gave her guess as to the diagnosis---Landau Klippel syndrome, or acquired epileptic aphasia. That was later ruled out by her totally normal EEG and MRI. But it upset me to see it there. I had asked the neurologist right out if she thought Janey had Landau Klippel and she has said no, all the while, that was exactly what she thought. L-K is a serious disorder where all of a sudden a child loses the ability to communicate and starts having seizures. Sometimes it's self-limiting, and stops at in the teen years, after the damage has been done, but sometimes not. I'm glad that isn't what Janey has, but there are still so many unanswered questions and probably always will be.

When do the compensatory rewards start rolling in?

I think for many years in life I really did feel like if something went very wrong for you, somehow there would be rewards or treats or compensations to balance out the wrong. I think it's because when you are a kid, that sort of happens---if you get very sick, you get some treats like soda you wouldn't otherwise have, if you miss a party at school, you might get a treat at home, if you cry because your sibling gets to go someplace you don't get to go, you might get to do something fun at home. I don't know why I thought adult life would be more that way. I guess it still hits me all the time that it just isn't. Maybe that is where the whole stupid Holland story comes in---you have a child with a disability, and things won't be what you expected, but you will get this whole OTHER bunch of great rewards----meeting all kinds of interesting new people, taking joy in every little achievement, etc. Well, I'm here to say right now I don't feel like I ever made it to Holland. Maybe I am still on the ship or airplane that will take me there some day.

I just felt so tired of being the mother of an autistic child today. We had my friend Fab over and it was great to see her, but I kept being struck by how I could not just ever relax and assume Janey was okay. I let my guard down for just a minute when she was in the kitchen alone, and she smeared her diaper all over. I let her play with the kids and something upsets her and she grabs hold of Fab's daughter and scares her, and me, I hope her daughter didn't realize that Janey was probably about to bite. Janey was happy to see Fab, but called her all kinds of random people's names, including my favorite for her to call other people, Mama. When Janey was upset with me today, she kept calling for Miss Heather, the OT at school.

I don't think Janey being autistic is making my life more rewarding. I probably am supposed to make myself think that, but I don't think it. I love her just how she is, but I can certainly picture a different Janey, one without autism, not that I would love that one any more than this one, but my life would be a lot, lot, lot, lot easier.

What is ABA?

I wanted to write about what ABA is, from my flawed and less than totally knowledgable perspective, and why I am not really pulling out all the holds to get Janey involved with it. It's short for Applied Behavioral Analysis. In the pure form, it consists of something called Discrete Trials. It works on teaching a child a piece of knowledge in a very small form---for example, if you wanted them to learn the shape circle, you would put a circle on a table and ask them to pick up the circle. If they did, fine, if they didn't, you would help them do it. You do this something like 10 times and record how well they do. Then you move on to another shape or another skill. The next day or whatever, you ask them the circle question again, and again record how they are doing, so you can see progress. You work your way up to things like giving them 10 shapes to choose from, or having them say the name, or them finding the big circle vs. the small one, etc.

It sounds pretty good, and of course most all parents and educators use versions of that. My problem with it is more the formality and the insistance on a certain routine, and the narrow focus. It's not a natural way to learn, I don't think. I also know with Janey's personality, we would spend many many hours with her rebelling, crying, running away, throwing things around, while the worker patiently just kept bringing her back and asking her the questions. I think it would involve a great deal of wasted time. And I don't think the knowledge would transfer. Janey DOES know a lot of things like what a circle is or what colors are---it's bringing out the knowledge in a natural way that is her issue. It's why I something think her problem is partly more one of word retrival than really of classic autism.

This all could be a bit of sour grapes as I can't seem to get things going with the schools for ABA. This is partly the cost. I have looked up lots of sites about ABA and many of those are run by autism moms who will stop at nothing to help their child (as if we all wouldn't) and who have what seems like unlimited funds to do so, or who live in rich school distracts. ABA costs a LOT to be done by trained people, and it takes a lot of time, and there is a shortage of people who can do it. It all adds up to much like so much in the US---we have graet health care, but access is the issue, and I am sure there are other parents like me who simply can't access the top notch help.

But I also feel that natural learning works better for Janey. And I think many kids with autism or related disorders get better as time goes on ON THEIR OWN, and it's hard to say whether many, many hours of drills helped or not. Sometimes I think they actually push the child into a peg---define the autism for them and make them more rigid. I am a bit of a rebel about the whole thing. I am still not sure Janey is really autistic. Maybe it's just a defense mechanism, but I don't know. I have seen William's progression. I have seen Janey make some giant steps. I have no idea how much more she can do.

Just a bit of morning thoughts and ranting!

Various thoughts

Janey and I are both sick today. When she is sick, she sleeps for hours. I am realizing today how much I miss her company. She has been talking to me so much more, and although it's often random talk, I look forward to hearing what she has to say!

She got her first real report card, at least as real as preschool report cards go. It was a bit of a downer, of course. Most categories were a "NY" grade, which means "not yet". Some were D, which means developing, and a just a few were S, which means Secure. Her strongest area for sure is the arts, in which everything was an S, and so luckily, her school heavily emphasizes the arts. Her worst area was mathematical thinking, in which almost everything was an NY. I am not that upset over it, as it's a realistic report and they wrote such nice things in the comments section. But I am starting to worry about kindergarten. She won't be able to keep up, I don't think, and I don't want her just to be entertained by aides while the rest of the class learns. I think she can learn, if reached the right way, but what is the right way? How kids with autism learn academics is something I am having trouble finding info on, besides ABA which just isn't going to happen. I want her to learn all she can, while still being happy at school. I guess I will do a lot of it at home, just by talking and reading to her.

She is so lethargic today. In a way it's almost nice, because she wants to be held a lot and we can snuggle, which she usually isn't a bit fan of, but I hate to see her sick.

Gearing up for Easter candy

For some reason, Easter seems to be Janey's favorite holiday. It's funny because I do very little for it---the Easter Bunny doesn't visit, we no longer go to church, I don't make much of a deal of it at all. The real draw for her is the chocolate bunnies. They are showing up in stores around now, and she craves one at all times (including the parts of the year where they are no-where to be found!) Today she also was asking for candy eggs. I think Easter seems like a holiday she can understand (from a secular point of view of course), involving lots of bunnies, chicks, candy and treats. It's a part of parenting I really enjoy---seeing how my kids pick their own interests and obsessions. It keeps life interesting.

Reports and questions

I got reports from Janey's 3 specialists today. The speech one was mixed---fairly positive, saying a lot that Janey was talking more in the last few weeks, which is true. But it's hard to measure and quantify her speech issues. They said she talks in an average of 5 word utterances, which is probably true, but those 5 words often make very little sense, or do in such a cryptic way you have to be a mind reader to understand them. They said she is starting to greet known adults by name and with a wave, which is once in a while true, but not consistantly at all. I love the speech therapist, it's not that I don't like what she says, more that it's just so hard to put on paper what is so off about Janey's talking. A good example today was her yelling out "I made a big Itsy bitsy Spider". I turned and saw she had wrapped yarn around her feet and was all tangled up, like a spider web. It's that round about way she often expresses herself. She also wanted her little cloth chair off her crib today, so just kept saying "Everybody sit in their seats" without motioning at all to the chair, I just figured it out by chance. It's like the connection that allow people to say things in a straightfoward way just aren't there.

The OT had a more discouraging report. Basically it said all Janey wants to do at OT is play with shaving cream, and she has little attention span for anything else, shows no pre-writing skills or drawing skills, etc. It made me want to say...put the damn shaving cream away for good, what does she need it for? She's not tactilely defensive, she is FINE with touching anything. I have never met the OT and hear only wonderful things about her, and I'm not trying to put her down, this is just frustration talking.

The PT was very positive and I agree there. I've seen so much progress in that area.

Janey says "I'm stuck" a million times a day. I think it's her description of how her mind feels when she gets upset--like the words are stuck, she's stuck in a feeling she doesn't want to have, a tune is stuck in her head, she is just stuck. Then she usually says "Body help me" (somebody help me). I wish I could do so better.

Hopeful

I have been feeling hopeful about Janey the last week. It's mostly her talking---it seems to be picking up in frequency. It's often not about anything in particular---a lot of it is still stories she tells to herself or random talk about Sonic or Sylvester or other characters she has never really seen but is interested in the sound of. But sometimes it's about slightly more concrete things, like more readily asking for what she wants to eat and more often picking up on what we say. Like tonight Tony said he was making pasta for dinner, and she perked right up and ran over to him and said "I want pasta!"

Also, today the after-school aide said she used the potty at school! That is the second time at school (vs. NEVER at home). She told Tony and I don't know all the details. I hope she asked to use it, that would be great to hear.

I've read a lot of places that autistic kids talking before age 5 is a very encouraging sign. I hope that's true in Janey's case.

Janey's cats

These cats have been Janey's favorite toys for a long time. Today we made some doll clothes for them, with my usual slopping workmanship. It was a lot of fun for me---like so many things I do with Janey, I am not sure if she really cared less. But she loves having her picture taken, so she looked happy for the pictures anyway. The first picture shows her in her manic sort of laughing face we see a lot. She looks happy, but she is not really engaged, more just laughing to herself at her own inner jokes. She was singing a made up Scooby Do song (another thing like Sonic she has never actually seen, but she likes the sound of). The second picture shows her a lot more engaged, and actually looking at me, which is always nice. It's the elusive state I like to see but have a hard time getting from her---calm and engaged, not crying or manic or zoning out.

How to read a book to Janey

My vision of motherhood, before I had kids, involved a GREAT deal of reading books. I pictured us spending huge portions of each day with a big pile of books in front of us, reading them for hours, commenting on every picture, discussing them, having to go to the library all the time to get more, my kids learning to read very early and discussing my own childhood favorites with me...it was a lovely fantasy. And of course, it never happened. The boys somewhat tolerated being read to, but certainly not all day long. Neither of them read extra early. However, both read well now, and William at least reads for pleasure a lot, although it's almost all books about trains---but scholarly complicated ones!

Janey is a whole other challenge. I will go through how it is to read to her...

Step one...Pick out a book I think she will like, one we haven't read before. Start reading it.

Step two...Janey freaks out, grabs the book and throws it, cries, screams, bites the book, the couch, tries to bite me, has a fit for a long time.

At which point you would guess step 3 would be give up, but I can be a determined little cuss when I want to be. So I go on...

Step three....Since I really do think she will like this book in the long run and since I believe reading is probably about as important as breathing, I read the book out loud anyway, ignoring Janey's fit and yelling. I don't comment on anything, I don't editorialize, I just read it and get it read.

Step four...Leave the book lying around where Janey will see it.

Step five....Janey finds the book, brings it to me, and asks me to read it as if she loved it the first time.

But it doesn't end there, of course...

Step six...I try to read to the book to her. She listens for perhaps a page, then starts turning the pages rapidly and shuts the book.

Step seven....repeat steps 5 and six about 50 times over the next few days.

Step eight...at last, when Janey's comfort level with the book is high, I hang onto it hard and actually read the words of at least half of it, and comment on pictures.

Step nine...Janey "reads" the book to me many times, with my same tone, and comments herself a little on the pictures---not using the text words but her own stream of consciousness talk.

Step ten...the book falls apart from overuse, after having a few pages ripped out and the binding broken, and of course the dust jacket taken off and lost (that step was also followed by her brothers, they all hated dust jackets!)

Is it worth it? I think so. But I do still wish it were easier. What I've had a bit more success with is reading her non-picture books, like fairy tales from treasuries, so it's just the story, not the physical book or the pictures. I don't know what she gets from them, but she seems to be able to listen to them with less distress.

Someday I do hope and dream she will love books.

Janey loves the sunlight

Janey loves to be in patches of sunlight, and see how the lights and shadows look. Sometimes it bothers me as it brings up the image of many autistic kids looking at their hands and getting self-absorbed, but other times I try to just let her enjoy it. Streams of sunlight are pretty amazing, when you stop and let yourself enjoy them!

Happy moments but also asthma

Freddy's asthma has been acting up a little. He is the only one of the three that's never had an autism spectrum diagnosis, and not co-incidentally I am sure the only one I had a normal pregnancy with. He nursed for 2 1/2 years also. But despite all that, his physical health is much worse than William or Janey. They are both rarely sick and seem to have strong immune systems, but Freddy got sick all the time as a little guy, and now has fairly significant asthma. We learned to really take it more seriously this past summer when he wound up in the hospital for two nights with a terrible attack. Now he is on 2 daily medications and 2 more as needed. He needed them lately when his peak flow meter showed he wasn't moving air well, and he was coughing a lot. I kept him home from school for two days which made him very angry. He is very sociable and hates to be kept home. But he couldn't promise me he would take his medication every 4 hours at school, although it's there and he has blanket permission to use it, so I couldn't let him go. I think he doesn't like to be set apart by having to take it. I talked to his advisor about it yesterday and I think we have a handle on it, and his peak flow was better today. I have probably gone from not taking it all seriously enough to taking it too seriously, but that is what an extremely scary time in the hospital watching them trying to help him breath will do.

But yesterday felt happy too. Janey had a show at school, their school does a very lot of music shows starting with the littlest kids. I didn't want to take Freddy out, so Tony came home to take her to school and see the show. My happy moment was dressing her up for it. It was somehow one of those moments where parenting is exactly how you once pictured it. I put her in a jumper dress and a turtleneck and tights and cute shoes, and her hair is long and with no bangs, back in a pony tail, and she looked so wonderful. She was in a very happy mood, and just the last week or so she seems to have changed from a toddler type to a little girl. I couldn't stop looking at her and crying a little. In some ways this is all my dream life, having a sweet little girl and two interesting and fun and smart boys and just watching them grow. I have to let myself forget all the not good parts sometimes and just be grateful for what I have.

Why is autism so polarizing?

This morning I was trying to look up methods of teaching autistic kids to read. It was so frustrating, as everything that I found was connected to one fanatical school of thought or another---how to teach using ABA, how to teach while eating a special diet (what does that have to do with reading?), how to teach through floor time...what if you just want to teach them to read, and you don't follow one of the strict regiments? Then I thought of looking at homeschooling autistic kids, not that I am thinking of that---with Janey's love to school, that would be cruel! All I could find about that was other fanatic sites about how much better homeschooling is, and how your child being autistic shouldn't keep you from homeschooling and how the system tries to force you to send your kids to school---nothing about HOW TO TEACH THEM. There must be research or methods out there of teaching a child with autism things like colors and shapes and numbers. Or I am starting to wonder---is there? Is everyone so focused on "curing" the autism and getting credit for that, that no-one just accepts---okay, they are autistic, and now how can we help them learn what they need to know? That is how I feel. I don't think Janey is going to suddenly become non-autistic. I've accepted that. So where do we go from here? How do I help her learn? Is anyone going to help her learn?

Janey's brothers

I was thinking a lot today about how Janey's autism affects her brothers. They are playing Guitar Hero right now, that they got for Christmas. Something about the game completely sets off Janey, and so they have barely played it. They love it, and I know they'd be playing it all the time if she didn't hate it so. A lot of what we do is guided by what upsets her and what doesn't. They don't complain much, they probably can't remember that well what it was like before it was that way, and William especially is very understanding of Janey. Freddy played SO well with her yesterday, and got her talking like she very rarely does. They don't object much to watching her while I do housework now and then. They are good brothers, but it can't be that easy for them at times. And we don't hesitate to say to them that someday it's possible they will be the ones to take care of her totally. I know a lot of people say they don't want their kids to feel that way, but I think family has to think that way, and it doesn't hurt kids to know there are some things we just do because we are family. Carrie's boyfriend Joe is such a wonderful example. I do think I need to keep trying to make sure they each have some time with Tony and me doing things they enjoy without Janey around at times, and that we all need to find things the whole family enjoys we can do WITH her around.

Home today, ups and downs

Mostly things lately have felt positive with Janey. I managed to contact someone about a big autism study at MGH, and will most likely be part of it, which will result in Janey (and the boys) getting some very good evaluations. Janey has been talking a lot. One day especially on the way to school she impressed me. She said "There's the Dunkin Donuts!" (which is right across the street but which she has never commented on before). Then a bit later "The ice cream place is gone!" Actually, they had a new sign so they looked quite different, but were still there! I told her that, and she said "The ice cream place is OPEN!". Then I pointed out the Chinese place, and she said "The Chinese restaurant is OPEN!" I hadn't said restaurant, so I was happy with that! For years she has been totally quiet on the ride to Dorchester, so it was wonderful to hear her talk.

Today I kept her home as it was so cold. It's been off and on. She explored her diaper which was dirty---that hasn't happened in a while. She also was getting obsessed with reading a book about The Three Little Kittens. I got out a book of fairy tales she got for Christmas and read a story while she screamed. By the end she had calmed down and was sort of listening, so I read another later with less screaming. I also played catch with her for a while, again, ignoring her protests until she calmed down. I guess I have to accept she is never going to WELCOME new or changes in activities, but she still needs them and likes them usually after a while. It's just hard to make myself do something which I know will make her cry. I've always been a sucker for crying. I overheard Freddy telling William when they were about 8 and 5 "Just cry about making cookies and you know Mama will make them if you cry!" Guilty as charged.

It is hard when she does bizarre things. Today I caught her taking dirty corn chips out of the trash and trying to eat them. She just doesn't catch on to things that you would not think you would have to explicitly teach, like that food in the trash is yucky. I always have to be on guard. But I have more hope most days she WILL learn.

Nights from H-E-Double Hockey Sticks

Janey's sleep used to be one of the easier things with her. Lately, however, she has taken to getting tired about 6pm, and extremely cranky, and nothing we can do can really keep her from going to bed that early. Then she wakes, around 11 or 12, and is totally awake for hours. We are early to bed people, but not that early, and if we go to sleep about 9 or 10, we get about 2 hours of sleep before she's up. And she isn't just up, she's either crying her eyes out or laughing hysterically or singing at the top of her lungs or requesting things "I want ice cream" "I want chips" "I want carrots". Our house is way too small, and we just don't sleep. Last night was so terrible. She was up from 10 to about 2. I got more sleep than Tony, as I slept from about 2-7, but he went to sleep about 8 and got 2 hours then, then slept from 2-4 when he has to get up. I don't know how he drives an hour to work, and I don't know how I take care of Janey. I am like a zombie today. She on the other hand is perfectly happy. Luckily she is in a TV mood, or I would be unable to cope. But it will all start over, as she does need the normal amount of sleep. She will fall asleep in the car on the way to school, or fall asleep about 5 tonight, and it all starts over. I am at a loss about what to do. It is like torture to keep her awake when she wants to sleep, and when she wants to be awake, any wishes we have to the contrary are of no interest to her. I have such fears of Tony falling asleep at the wheel on 128.

Janey singing

I've been trying today when Janey starts singing a song to resist the temptation to sing along, and just listen to how she sings. I think I always feel like I have to be in teach mode, and I should sing along to help her learn. But it was great today just listening. She sang her version of Hush Little Baby, with lines like "Sonic's gonna buy you a knockingbird" and "When that dying ring turns grass", instead of Papa's gonna buy you a mockingbird and When that diamond ring turns brass. She loves to sing Frosty the Snowman lately, and sings most of the words to that the conventional way, in rhythm and tune, even when it changes tempo with the Thumpity Thump Thump part.

Good times

I had some great times with Janey the past few days. I feel like we really were connecting, after feeling for a while like she liked everyone else better than Mama! The other night, Tony was working out with the ski machine, so I took her into the bathroom to keep her out of his way. There was a big My Little Pony in there, an oversized one. She showed an interest so I ran with it, and we gave the pony a bath and shampoo. Then we played with him (her?) for such a long time! Janey was really playing some nice pretend play and we both were having fun. She told me to kiss the pony, and actually held it up to my lips and said "MAH" like a kiss. Then today I was playing show tunes on the TV, one of the music channels, and they played "Let's Go Fly A Kite" She was in the sunlight and started to dance to it, her wonderful dancing which she must have gotten from her grandfather Amara as I sure can't dance and Tony doesn't much either. I got up and danced and sang with her, in the light, and it just felt like one of those perfect moments, like at the end of a movie or tv show when the music swells and you get that Happily Ever After moment. I have to remember moments like that. I love her so much just the way she is---she is an amazing girl---beautiful, creative, graceful, endless fascinating. Certainly challenging, but also just an amazing daughter.

The morning with Janey

Morning started about 2am---Janey woke up ready to have fun. There is no getting her back to sleep when she gets like this---she is sort of manic. Tony and I took turns sleeping and trying to get her to sleep. She fell back asleep about 6:30, and slept until about 10. So I had a restful time which I needed after the short night. When she got up, I let her wake up gradually, as sudden wakings are not her thing. Once she was all the way up, I gave her breakfast. Then I tried to sneakily read her a book, by reading it "to myself", but she caught on and threw a fit. She hates to be read to. Then we played kitties for quite a while. Mostly this is her saying things about them "The kitties are awake", "The Kitties woke up". I did something that upset her, so it made Stripe Kitty upset, and I had to hold Stripe Kitty for a long time. Janey makes sure I am holding her right, with 2 hands. I do to kitty what I would do with Janey when she is upset---sing her songs, especially When You Walk Through the Storm, and pat her. I take this chance to talk to Kitty about things that might be upsetting Janey, and Janey does listen but who knows what gets through? Then I tried a show on Disney Channel, but that was not in Janey's plan so she threw another fit. TV off. Then we had lunch. Janey then noticed a boxed present from Christmas, a Calico Critters kitchen. It has been making her upset looking at it for days. I finally decided to just open it up, as it couldn't be worse than how upset just looking at the outside of the box was making her. She was not pleased, but paid attention as I took out all the adorable pieces. A dumb present from me, I guess, but it's the kind of thing I wish she liked, and she does like the fuzzy Critters, but not the furniture, I guess. She tried to eat the play toast, I think it's not that she thinks it's real but it's a way of showing how mad she is. After a while with me playing and her whimpering and watching, she started saying "I'm stuck! I'm stuck!" which means she is upset about something and it's stuck in her head. I put all the toys away. Now she is playing with some of the furniture I just put away. Often it's that way, I have to almost force her to try new things, and then later she likes them.

It makes me think reading this that it sounds like I am always trying to get her to do something she doesn't want to. But if I just let the day go except as she liked, it would either be (if it's a TV day) her watching TV for a long time, or more often, her repeating phrases and looking at her hands and crying. She is upset either way, so I do try to give her something new to do. It makes me so upset that I can't make her happy. I don't know what to do a lot of times. Now she is saying "Somebody stole my sock drawer! It was you! It was Ja-Cai (a boy in her class she talks about a lot"

Time to get ready for school, where she is almost always extremely happy.

Happy and Sad New Year

The new year has started off in such a mixed way. New Year's Day was great. Janey was at the best I've seen her in a LONG time. She was talking so much, playing pretend play all day with her cotton cats from Peru, making them hug, talking to me, being so engaged,using words I haven't heard her use in a year, asking for her Care Bears movie which she has had no interest in for a long long time---it was truly wonderful. When she has a day like that, I think it will last. I guess I am an optimist at heart, and I always think the good times will last and the bad times won't last long. It isn't always true. The next few days were awful. She was angry and upset all day, lashing out, trying to bite a lot, crying, etc. Yesterday Tony was up with her early, and I woke up to her having an extremely severe fit---and screaming "I'm NOT CRAZY!" I have no idea where she heard that word applied to her. It all started when Tony let her turn on the coffee maker. He had no idea why that set her off. Later, I broke my vow and tried to go to the Chinese buffet with all of us. She was okay for a while, eating french fries with ketchup, but then got upset and smashed her hands into the ketchup in a bowl, screamed so loud there was no question of keeping her in there. I took her out to the car and spent the end of yet another restaurant meal calming her in the car. Never again. But she started talking about the morning, and said "I broke the coffee maker! It made a sound! I'm sorry!" I think she thought the turning on sound was the sound of it breaking, and she was scared by it. I guess it's progress she did talk about what happened, but there are so many sounds out there and it's so hard to keep any of them from scaring her. It just goes on forever and ever.