Tough days

Janey was sick over Christmas, mostly Christmas eve, she was getting better after that, and today I think was mostly better physically, but TERRIBLE in behavior. She whined all day and threw many, many tantrums. They are getting more destructive---she does things like trying to break things we are using like computers, trying to smash on the TV, biting on everything she can and sometimes biting holes in things, and when she was really losing it, trying very hard to bite me and succeeding in scratching my face quite badly. It is so hard to deal with. I keep telling myself she is a little 4 year old girl, small for her age even, and I need to keep that in mind, but sometimes I feel almost scared of her. I love her so very much and want her to be happy more than anything on earth, but I don't know how to keep her happy. She said in the middle of one of her fits that she was scared, actually she said "The crocodile scared me". The crocodile was in a pop-up book and did startle her, but that was about a month ago, so I think she just was remembering a phrase with scared in it to use for this situation. I tried giving her a bath to calm her down but it didn't work. She is asleep now. It doesn't hep that Christmas vacation started 3 days early, so she suddenly wasn't going to school and didn't know why although of course I tried to explain. Oh, well. I hope 2009 brings me more hope.

School vs. Home

Yesterday was something. Janey fell asleep on the way to school, so I carried her in and stayed with her in the classroom as the other kids and teachers were lining up in the hall. She woke up pretty quickly and I was worried as sometimes she freaks out when she wakes up in a different place than she fell asleep, but when she saw she was at school, she was THRILLED. We put her stuff away and went into the hall to see the other kids. On the way there, the aide that is with her at afterschool saw her and ran over to hug her. The look on Janey's face was that of pure bliss. She jumped up and down and hugged the lady (Donna) over and over and was so happy it was incredible. Of course I was glad but of course I was also so hurt in a way. She truly is happier at school than home. I've thought that was probably the case for a while, from the reports I get and the blank look on their faces when I mention how tough she is at home sometimes, but I am sure now. Then we walked down with the kids and walked back to the room, and she grabbed both her main teachers' hands and danced around with them. Then to throw me a bone she took my hand too.

I don't mean to sound like I am not happy she loves school. But I wish I could make her feel that happy about home. I sometimes feel so jealous of people whose kids love to homeschool. Both boys have always been very horrified when I mention anything like that. They like school, and I guess Janey is like them. They are all extroverts to different extents, which is so strange as I am certainly not.

The Bad McDonalds Trip

Yesterday was really something, but I am hoping perhaps it gave me some insight into Janey. I took her with me to two stores Christmas shopping. Usually she loves to shop, and I have tended to stay home too much with her in the morning before school, so I felt good about taking her out. She asked me at the second store "you want chicken nuggets?" which meant SHE wanted to go to McDonalds, and we have done that before and it's gone quite well. So we went there. I think the first problem was we couldn't sit where we did the 4 or so other times we have gone. Also, there were kids at the next table, nice kids but talkative and Janey kept hearing them. But who knows what really was happening---she kept getting more and more upset. Finally she crawled under the table to me, and just FREAKED OUT---started biting the back of the chair, the table, anything within reach, and then tried her hardest to bit me. I had to hold her coat between me and her mouth, and she bit so hard on the coat her lips was bleeding. I was truly a little scared. I knew I just had to get her out of there, and talked to her as calmly as I could and got her out as quickly as I could. She didn't say a word in the car, but as we got home, she said one of her longest statements "I heard a clicking sound, and the clicking sounded like BOOM! I heard a footprints sound". I really don't know if this was about the McDs, but I think it was---she heard some kind of clicking sound that sounded really loud to her, and maybe like someone was walking over to her. She kept repeating that same phrase many times. I tried of course to ask her more about it, but to no avail.

A long time ago I read a book, I think called "The Sound of a Miracle" about a girl diagnosed with autism that is "cured" by something I think is called auditory training. I thought it was pretty foolish, but now I do wonder how much sounds and extra-sensitive hearing affect Janey. I know William also has very sensitive hearing, and Tony sometimes too. And I know Janey is very bothered by things that sound wrong---songs sung in a silly way, and even things like a burb noise. A few nights ago she went crazy because I was singing "Away in a Manger" to her and said "The stars in the BRIGHT sky" instead of how I usually say it, "The Stars in the Sky". I really don't know what to do about this all, but I might try to do some more research. I know I think the expensive "training" the book talked about is a huge scam. I actually went years ago to a talk about it and was extremely underwhelmed.

Oh, well.

Janey's meeting

I broke down at Janey's meeting today. It was just a little parent teacher meeting, not an IEP meeting. I like her teachers a lot, but it's an integrated class, not an autism class, where she probably should be. She is not learning anything, and she is making no progress, I must admit. Although we have all tried to teach her colors, numbers, shapes, for years, she makes no progress. I wish I knew what she is capable of learning, so I would not hound her to learn things she just can't. I cried in front of them out of my frustration that other kids are given better services because their parents threaten the school district. I need to learn to do that. But first I must be sure what I want them to do, and I am not.

I am trying to remember to see Janey when she cries or is upset as a scared little 4 year old, in a world she doesn't understand well. It's ironic that when she needs me to see her that way, and when she IS that way more than most 4 year olds, it's harder for me to do that than if she were more able to talk. I talked and still do talk to the boys for hours about their fears and concerns,but with Janey, after an hour or so of crying I just want her to not cry any more. I love that little girl so much, and I feel like I am totally not up to this task.

Word Retrieval Problems?

I am thinking more and more that Janey has real word retrieval problems. I think it's why she can be very verbal in made up songs that go on and on, but when she has to find a specific word, it's very hard. For example, for days whenever she was asking me for something, she would call me Daddy..."I need a chocolate milk baba, Daddy!" when he was at work. I said I wanted to be called Mama and wouldn't give her things if I was called Daddy. She has solved that by asking for everything by saying Mama AND Daddy---"I want a juice box, Mama and Daddy"---as if it's just too hard to figure out who to ask so she will make us happy by covering both bases. It's almost painful to watch her find the words when she really wants something and can't use a set phrase to get it, like in the car when she wanted a specific talking toy and finally said "Need my froggie computer" in a slow, labored voice, to get her LeapPad toy. But the words are up there, and in songs or in lists she talks to herself they all come out easily. I can't understand it.

She is getting better at choices. I show her two choices, in either hand, and she will pick quickly and easily---for example, cookies or crackers, a doll or a cat. She KNOWS what she wants, but it's so hard for her to put into words. I tried yesterday making Yes and No cards, so she could pick the card. I asked her if she wanted chocolate in her milk and she picked the No card, although I know she wanted it. So I said "Okay, I won't put chocolate in" and that prompted her to actually say out loud "I want chocolate", so even if the cards didn't work as they should, they got her to talk.

She's a mystery that goes on and on.

No fun with stickers

I tried hard today to make a fun activity with Janey. I have lots of stickers, all different cool kinds, some that I have gotten at craft stores as parts of big grab bags, with special textures and so on. I took a big book, spiral bound, that I bought for us to color in, and tried playing stickers with Janey. I wasn't directing her---I let her do whatever she wanted with the stickers---but I put some in the book and talked about them. I thought it would be a vocabulary time and a sensory time and all kinds of good things. But like so many times with Janey, it turned instead into a crying time. I don't know why. It seems like she doesn't like to be focused on---she knew I was there to play with her, and that is too intrusive I guess. It's one of those days I feel at such a loss.

Last night seemed better. I was thinking how some parts about Janey are so easy. She loves good food. She was thrilled last night to eat lots of raw carrots and cucumbers, and homemade chicken soup. She is in no way a picky eager. She is also, knock on wood, a good sleeper. She is ready to sleep about 7:45 each night and sleeps until about 7:45 each morning. Some nights she does wake up, but usually it's not that hard to get her back down. She was doing some good talking last night too. She said "I will give Danny (the cat) a carrot". We said cats didn't like carrots much, and she said "It is NOT silly to give Danny a carrot!" although we hadn't used that word.

I feel so alone much of the time. In a world that's supposed to be filled with autistic kids, I feel like the only parent of one on earth lots of times.

What bothers me

I have sort of put my finger on what bothers me about people telling me to try ABA (or dairy free diets, or vitamins, or anything they tell me). If I tell someone that Janey is autistic, they can have know me 5 seconds and Janey just as long or not at all, and they are saying "How much ABA does she get? Is she getting ABA? What kind of program is she in at school? What diets have you tried?" And then feeling free to tell me EXACTLY what I need to do---"You have to force the schools to give her ABA---you have to try diets, you have to this and that..." JUST IMAGINE someone saying that about a "regular" kid---"You have to put her in dancing lessons, you have to send her to private school, you have to make her eat pumpkin every day, you have to teach her phonics...." It just wouldn't happen. Most of us allow others to make decisions about how to raise their own kids, or at least don't presume to know what is best for a child they don't know or barely know. I find it sort of biased to assume EVERY child with autism needs the exact same things.

Silly eyes

I was taking a bunch of pictures of Janey with Tony and caught this one of her doing one of her eye things---looking up and somewhat out of focus. She's not looking AT anything, just enjoying playing with her vision.

The lights

I have been upset lately by some of Janey's new habits. She is more and more into looking at lights, and getting totally caught up in them. A few days ago she came home from school and started playing with a toy she has that plays music and has lights that flash. She put her face right straight down on the lights so they were flashing in her eyes. I pulled her away but the minute I wasn't stopping her, she was back doing it. She is finding sunlight filtering in and playing in it with her hand forever if I don't stop her. It is scary to see---I always feel like she is slipping away from me, like she is falling off a cliff and I am holding onto her hand but losing grip. She is also calling people by wrong names more and more. It's like she knows people have names, but they are starting to be interchangable to her. I am called Daddy half the time, when Carrie was here she called her Nana, she calls her teachers whatever teacher name comes to mind.

I called the TILL autism support center today to see when there was a support group. I have resisted support groups with every ounce of my being, as I felt like I wasn't really in need of one, that Janey was different and I didn't need to talk to people with REALLY autistic kids. But I am being knocked out of that feeling. I do need to talk to them. There is one next week and I will go.

I have been very very depressed this last few days. Lots of things, but a lot of it is worry and fear and terror over what will happen with Janey.

My autism philosophy

Slowly I am trying to figure out just what my philosophy on autism and raising Janey is. I think it's something I have to do, so I don't just feel like I am doing all the wrong things, or not following all the advice out there. I need to be confident that I am doing what I think is right, and I have to look at William and see that I already did it right once---there was a time it would have been impossible to think of him in a regular 8th grade classroom, not on any IEP, happy and doing pretty well, a fine young man really. I don't know why I feel so useless sometimes when I have already done what many strive to do. I have to feel like I do know something. But there is so much more about autism out there now than there was then, and everyone has such strong opinions. I am not a fighter or a warrior or anything like that. I can't be. But I do know Janey. So I am going to try to figure out what I want to do for her.

Here is my first priority---love her and surround her with other people that love her. Make that my number one priority in terms of everything she does---her education, her surroundings, who is near her. If she isn't loved, adored, I don't want her there. She is a sweet, beautiful four year old girl, and that comes before any autism or anything else. It is why I am at peace with her school. Her classroom might not be winning any prizes for academic achievement or being on the cutting edge of autism treatment, but boy, do they love her. Both teachers and the aide have known her since she was two weeks old. They are some of the most loving and caring people I've met. The other kids seem to adore her too---especially a few of the boys, who fight over who gets to hold her hand! The girls run up to her to say hi. The therapists all beam when they talk about her. Even the subs are people that know her, and are so thrilled when she remembers them. THAT is what I want for her in a school. She certainly gets a huge amount of love from Tony and me and her brothers, from her aunt Carrie and her Nana and Grandpa, her cousin Zeben and from special friends of the family. I never want people to see her as a challenging case, or a little girl with odd behaviors that need to be taken away. I too want her to stop looking at her hands or repeating odd phrases or not answering questions, but much more than that I love her and that including for now loving things she does.

Putting television to use

I've always felt that it's not a big problem for kids to watch TV some. I get a lot of this attitude from my sister, who always let her son watch as much as he wanted. I can't think of a much smarter or better adjusted boy than her 17 year old son, and now he doesn't watch much TV at all, and neither do my 14 or 11 year old (Freddy never did, William did at times).

For a year or so, Janey wouldn't watch any TV. It was too unpredictable for her, I think. Lately I've tried having a routine for TV. Every day we are home, we watch Sesame Street and Word World. She likes both of them a lot, and I watch them with her. They have pretty predictable routines (Sesame Street a lot more now than in the past, with Elmo's World and so on) and watching them day after day,she is getting very happy with them,and saying letters along with them. I think it's a non-threatening way for her to learn, as opposed to drill or flashcards. I know many would disagree. But slowly I think I am developing my own philosophies about her, and having more courage to believe in them.

New words

I am trying to introduce Janey to a new word each day, by saying it over and over again in conversation and trying to really emphasize it. I am starting with feelings words---yesterday was "worried" and today is "excited". I don't know if it will work---I haven't heard either word used by her yet---but I think she could really use some feelings words. The only thing she says now about her feelings is once in a while when she is crying like crazy she says "I'm pretty sad, Mama" which I think came from me saying "You're pretty sad".

Last night I was half asleep and Janey wanted me to read a book. By that she means actually don't read her the book, don't even look at it, or she will freak out, just listen to her talk about the book. So I did, and she talked and talked about it, with all kinds of word variety and sentences, I can't remember anything exactly but things like "and then the bunny hid and no one could find him"---with the sound of a child's book. I wish I could unlock the kind of talking she does when singing or when talking to herself once in a while.

Pictures

I wasn't sure how to label the pictures! I haven't put on pictures before but I thought if anyone was reading this that didn't know Janey, they might like to be able to picture her. I love the picture of her in the sweater. It shows her in her really happy mode! The one of her looking up was taken at my sister's house, looking at her ceiling fan! It shows her sort of out of it but happy look,when she is looking at things that are visual but not really tuned in. The outdoor picture is older, and shows her quiet sort of mode, which is her mode a lot of the time.

A few pictures of Janey

Hard on a marriage

I know they say a lot of marriages break up after having a disabled child. I guess I can see sometimes how that would happen. Last night we had an awful fight. Janey was crying for hours as she hasn't done much lately, but was so happy to see Tony when he got home. He had to go to a drs. appt. at 6 ( he has many, many appts to check on his diabetes and insulin and they are quick appts). He said at first he would take Janey if William would go too, then changed his mind a couple times. I said whatever, leave her if he wanted to, but William wanted to go and they were about to when something annoyed him and he started to leave (at 5:30, the appt. is 2 minutes away). I called him back and asked him to take William and Janey, and he was FURIOUS over it and was yelling in the driveway as he took them, things I am sure he wishes he hadn't said about me. I was quite hurt and when he got home we were fighting a lot. I get so burned out by Janey sometimes and it seems like he doesn't get that I have to deal with her NO MATTER WHAT if he's at work, but when I am trying to work or make dinner or anything, he deals with her IF there is nothing else he feels comes first. I know taking her to a drs. appt. is not the best situation, but William is 14 and easily capable of watching her in the waiting room, and Tony did offer. Oh, well, of course the silly details are the tip of the iceburg, we are both just in over our heads lately and overwhelmed with financial problems and not really knowing how to help Janey best and our falling apart house and all. I shouldn't complain but sometimes I do anyway.

Feeling better, good talking days

After last week feeling so depressing in the middle, the last few days have been better. Janey has had a few good talking days. They are few and far between but I do love them. On Friday she got a notion that she wanted a chocolate bunny. She adores them, but I had thought she had stopped asking for them a while after Easter, but something reminded her. It was really no use trying to explain seasonal merchandise to her. She was full of suggestions "Let's go to the CVS! Let's go to the chocolate bunny store!" That night,when Tony asked her if she needed help with them computer, she said "What the heck..."She's been singing more little songs too, mostly about Sonic. She really has no idea who Sonic is, I don't think she's ever seen him in a cartoon or video game, but she loves him. She sang a very,very long song at the grocery store about Sonic flying high in the sky like a butterfly. All made up by her.

A friend of mine suggested I try to write down more of the smart cute things Janey says, to help me feel better on low days. At first I felt annoyed by the suggestion, like it was sort of Pollyanna-ish, but it actually was a good idea. So many days feel like treading water or going backwards, it's really good to remember she does make progress.

Depressed

I have been depressed lately. Usually I do pretty well not letting things get me down, but not lately. I am feeling like I am no good to Janey, that I don't do the right things to "cure" her, even though I don't believe in cures. But the people who do, who have faith in lactose free diets or ABA or Floortime or anything, at least feel like they are doing something. I see Janey making her hand circles, or obsessively pushing buttons on a play phone, or getting hysterical when I sing a song that might make her "stuck", or ignoring the 2 sweet girls from her class that run over to her and say "It's Janey! Janey's here!" when I know in a few years if she doesn't ever respond, they will just stop trying. I just don't get sometimes why this has all happened. I KNOW she wasn't autistic from birth. I KNOW something happened, starting around June 2007. But what? What did I do or not do, or what happened in her brain, WHY? Why can't I have a girl like it sometimes seems there are a million of, so talkative and cute and lively, or even shy and clinging and just wanting to be with Mama, but talking to Mama and her family, or even a brat who is smart as a whip (no, I don't really want that). Most days I am good at the unconditional love, but other days it's not that it's conditional, but it's just harder to feel an outpouring of it. I feel someone else could do such a better job than me.

More hands in front of eyes

Janey is really getting into the visual stim type thing. It upsets me a lot to see---it interests her more now than most anything. I find her often when I am not completely engaging her off in a corner with her hands over her eyes like glasses, looking at things that way. It's scary that she loves to do it so much. But on the other hand, some good talking lately. Last night she walked all around the house saying what she saw---"I see my computer, I see the TV, I see the cram-raw (camera)" etc. The way she says things she doesn't usually say is so different than how her usual talking is, it's slowed down and in a whole different tone, that is how the "cram-raw" was said. The other day I put new sheets on my bed, and she wanted so much to comment on it. You could also see the wheels turning, and finally she said "you have a snowman blanket". Actually, it was sheets with snowflakes, but I certainly got her point. It's nice she does still try to communicate.

Hands in front of eyes

Janey is doing something I guess is technically called "stimming" a lot. She holds her fingers in front of her eyes and looks at them, moves them around and looks at light and dust through them. She also makes them into circles and uses them like telescopes. It's more and more of the time. I hate to see it---it's like she is fading away in front of me when she does that. I don't know how to keep her from doing it. Today I tried doing it with her, making it a game and talking to her about it, but I don't think that did much. I am resorting now and then to pulling away her hands and saying "don't do that" but I doubt that does a thing.

She did today remember I told her days ago that one of her toys needed new batteries. She brought it to me and said "It's broken. It needs batteries."

I tried toilet training stuff a lot this morning---putting her in just leggings so she could pull them down easily, putting her on the potty a lot---nothing. She did run into me after wetting all over the kitchen floor and her leggings and said "I can't pee in the potty"----yup, I noticed that, Janey. Probably a very encouraing connection but sometimes I get tired of encouraging and just want actual results!

Reading differently

Today a caseworker from the Department of Mental Retardation came to see me, just to introduce herself. She was very nice, and gave me some good info to look over. I noticed how well Janey responded to her when she asked Janey things in a very animated and sort of insistent voice. Later this morning when I was reading a book to Jane, which can often be hard as she gets upset if anything seems amiss in the reading, I asked her about some animals in the book in a loud and excited way "Janey, what's that there? What is it? What is it? What is it? WHAT IS THAT?" which I would not think would have been good, and Janey did look at me like I was crazy, but then answered excitedly too. I guess I can learn new tricks.

I felt happy dropping Janey at school today. She was actually paying attention to another girl, who was twirling around, Janey laughed at her and tried to imitate her (but called her Janey and not her name!) Then when that girl's mother was asking her to think of other people in the class whose names started with J, Janey spoke up and said "Roxie!" who IS a girl in her class, but not a J one---can't have everything! Then when it was time to go in, the little boy who is so good to her took her hand and walked her down the steps and she never looked back. It was a day that I felt like inclusion IS the answer.

Hello Kitty again

Janey never tells me about school. I live for the little scraps I hear from her teachers, as otherwise the day would be a total blank to me. When she does talk to me after school, it's to say something like she did today "Hello Kitty hurt me!" I assume it's part of the fantasy life that the other day involved Hello Kitty's restaurant, but I always wonder-----did some kid with an Hello Kitty backpack hurt her? Is she trying to explain something else to me that I just don't get?

We visited friends after school, with a 3 and 2 year old---extra bright kids, and it was hard to see how very little Janey interacts with them. The 3 year old kept wanting to show her things or have her talk to him, and unlike adults he wasn't subtle---he would just yell in her ear "JANEY! LOOK AT ME! TALK TO ME!" but she could completely ignore him. She is sure good at ignoring at times.

What does it mean?

Janey woke me up this morning in one of her favorite ways---repeating a phrase. This time it was "Look at that Hello Kitty restaurant!". She must have said it 100 times, in a loud ringing voice, using exactly the same tone. I tried hard to branch things out a little and ask questions---where is this restaurant? What are you going to order there? Do they have pasta there? Is Hello Kitty the waitress? I tried just playing along, that we were at an Hello Kitty restaurant and were ordering. I tried getting her Hello Kitty books and toys and playing with them. But nothing really engaged her. She just kept saying the phrase. It's a good example of how she uses language. She talks clearly and mostly grammatically, but usually without much meaning anyone can figure out.

Screaming night

Janey had one of her screaming crying nights last night. About 6 she started to whimper, and then it turned into full blown screaming and crying for hours. Her nose was running a little which sometimes makes her crazy. She kept saying "Don't push Jhondell" (a boy in her class) so maybe she pushed him or he pushed her, and it kept flashing back,but it's hard to say. After a couple hours of crying my patience is just gone. Tony finally took her in her sleepers for a ride in the car until she fell asleep, and she slept all night well and is still asleep. I can take almost anything but the non-stop crying.

Today she starts after school. It's hard because I can't really explain it to her. I did the best I can but I am sure she has no clue. I hope it's not a disaster. We get it for free, one of the few benefits ever we have gotten from the state, mainly because I never apply for them, just another form of denial, but also because we are above poverty level, but don't make enough to actually afford anything on our own.

Oh, well. Janey's talking isn't bad lately. She has started using people's names a lot when talking,like saying "Mama, I want cheese-its!". yesterday she was talking about a snowman, and I asked her where it was, and she actually SHOWED me---it was painted on an advent calendar thing we have!

Manic Crazy Times

The last few days have been tough with Janey. She has been happy at school, that's the good part. But she is really being crazy other times. We went to a friend's house a few days ago. It was going fairly well---we went for a long walk and she played (or ignored) the 3 and 2 year old. Then we had supper there---I should have known that was too long to stay. During supper for no reason at all Janey got up and started strangling the 3 year old in total fury. She didn't of course have strength to hurt him really but it made me sick to see. I yelled at her and grabbed her and put her in time out, which she enjoys because it's just sitting there. Then when I said she could get up she went right back to the boy and did it again, but this time yelling "I'm sorry!" I didn't really finish dinner, just got out of there.

Last night was awful too. She cried for hours without stopping, except now and then to relive me yelling at her "STOP! You are in TIME OUT!" in my tone. Then she got manic and was dancing around the house, jumping up and down and singing very loudly. Finally I did get her to sleep but neither Tony or I got much sleep.

Sometimes I just don't know how we are going to handle her when she is bigger. I guess I just live on hope it will get better. I have told so many people that 4 is the hardest year, based on William and other kids I have known. I hope it's true.

Songs that get caught

Janey often has a problem with songs getting "stuck"---she will start singing a song to herself very happily, but after a while she just can't stop and she gets more and more upset, all the while singing through her tears. It's awful to see and very hard to help. Tonight was the first time she told me she was stuck. She wasn't singing, so I guess it was stuck in her head---she said "I am stuck! Itsy bitsy spider! Help me!" I wish I knew how. I sang other songs out loud which sometimes helps, but basically she just finally fell asleep unhappy. Also earlier tonight was the first time she said "upset". Tony was worked up about something and talking loud, and I told her to stop or Janey would get upset, and she said "I upset".

Overall she had a cheery day, but in the car driving to school I decided to try playing one of her CDs. She used to love that, but lately gets hysterical if I play them. She is fine with news radio or even my stations like country or rock, but her kids CDs drive her out of her mind. I put one on for just a second and it turned a happy day into a horrible crying spree. I wonder if she worries about the songs she likes getting stuck. Music ties in so much to all her issues, and I wish I understood her mind and could help her use it constructively.

Some great talking

Janey was talking up a storm tonight. It's not really conversation, but it's so fun to hear. She was talking about Tommy, the cat, and patting him. She said "I love Tommy. He's not a bad cat. I love Tommy most in the whole wide word. He is purple and green and blue, and he has more ears" It wasn't all at once like that, but along those lines. It made me so happy just to hear her talking a lot. All morning she kept coming up to me and saying "Hi, Mama!" and then this afternoon she said "Good morning, Mama!", not the right time but still so nice. She was extra happy after school again. I am feeling more upbeat than some days.

better morning

This morning seemed better than the last few. I was watching a lot of MSNBC coverage which was replaying 911 events as they happened, and it seems like Janey does the best if I am there in the room, talking with her off and on but not directing her play. She never pays the least bit of attention to adult TV, so I didn't worry about watching the upsetting things. It made me think of 7 years ago, when Freddy was exactly the age Janey is today. He paid more attention, but still not a lot, but could tell me about talking to Mr. Paul at school about "buildings being hit with planes" and he told her what Mr. Paul said "they are far away and you are safe here". It's light years from anything Janey could tell me or say. Freddy has no memory of 9-11 any more.

Janey ironically played a lot with the stickers that I tried to get her to play with yesterday. I left them out (not surprisingly with the state of my house) and she picked them up and had a great time with them on her own. Often it seems like my role with her is just expose her to things, even if they make her crazy at the time, so then they aren't as unfamiliar and she can feel comfortable doing them later on.

School and talking

The start of the school year is going incredibly smoothly for Janey---it's making me knock on wood and hold my breath all the time. She is eager to get into the room and happy when she comes out. Today she was so happy she was almost giddy. I haven't heard much from her teachers yet, and no news is good news I usually feel.

Her talking was interesting today too. At one point she said something along the lines of "I have 20 dollars. Go to McDonalds, chicken nuggets and fries" I guess she has heard us enough times tell the boys they can get McDonalds if they have their own money! Tonight she was patting the cat Schemer and said "I love Schemer dog. Don't die"

The mornings are long sometimes before she goes to school. I get frustrated as almost any activity I try with her gets her crying and upset. I feel guilty if I don't try to do anything with her, but she's happier if I don't. I tried a big sticker project, and reading books, and playing Wonder Pets and lots more, but she either just likes to walk around the house talking to herself or she likes hanging off me crying or laughing. I should go someplace in the car each day, just to kill the time, but I feel like that's not too interactive. I should take her to things like library times, but she runs off and screams and ruins it for every other kid. Should I just not care if she does this, as she has a right to be there too? I can't do that. I don't think she's getting much from things when she is running and crying, and I sure aren't, and why should the other kids not get anything from it either? It is so hard to know what's best to do. I feel guilty day and night about everything.

Crying

Janey cries a very lot. Usually I have little to no idea why she is crying. I always try to figure it out, but sometimes this seems useless---she never tells me, and often it's very unclear what if anything is bothering her. It's the very hardest part of her autism to me. I can take almost anything, but crying I can't fix really upsets me. If I just ignore it, it gets worse and worse and worse, and that's not really my way anyway---I want to help her feel better. I think if she could talk more, or talk about meaningful things more, it would help. She talks a lot now, but it's usually almost nonsense---yesterday on the way to school she said "I don't want any chocolate cheesecake" over and over and over. This morning she repeatedly said "Someone stepped on William's tongue---it's a serious day". Her most useful phrases are things like "I want a juice box" or "I want yoghurt"---all want sort of phrases. When she is upset, sometimes she will say things like "It's okay, my little sweetie" or "What feels wrong?", repeating what I have said in the past. I take that as her wanting me to say those things, but who knows? Some days I simply don't feel up to the task of being her mother. I feel like she needs a mother with more financial resources, a better advocate, a stronger, more creative person. I love her more than anyone else could, but is that enough?

Starting school

Janey started K1 (4 year old kindergarten) on Monday. It seemed to go very well. Her "boyfriend" JJ was right there to hold her hand going into the room. I was thinking she has a weak sense of time, and perhaps the summer seemed like nothing to her, and it just seems like this is another same old day of school (she is in the same room with the same kids mostly, and the same teacher).

It's an integrated classroom, with about 12 regular ed kids and about 4 special ed. Janey was supposed to go full day this year, but they decided 2 other kids needed the spot more. I was upset but I am okay with it now---we don't have to be at school until 12:50pm and that gives me a relaxed morning for the first time in years, and I won't have one again until God knows when. Janey's brothers William and Freddy both walk to school now. I was sort of eager to see if these other 2 kids really looked like they needed the spot, and I think they do from what I saw. I know all the hard core advocates out there are horrified I didn't push my way into getting her the spot. I did get offered a full time place at another school, but I like her where she is and I didn't want to make a change I would have to live with for years. She will be going to after school some this year, and that will extend her day some, so I think it will be okay.

The aide in the room (not for Janey, just a general aide) seems like a sub, as the regular one is out a lot with back problems. She seemed nice, and yesterday told me that Janey stood up in the middle of circle time and yelled out "What's going on here?" which cracked everyone up. Janey of course has told me nothing about school, except last night saying "I will see Ja-chi" (a boy there). I think she lives for the flirting already! She is the littlest and (in my opinion) the prettiest there, and I guess that still works for something.

What scared means

I am trying to teach Janey what scared means, to help her understand how she often seems to feel. Anything new makes her scared---including a new episode of a TV show she likes, a new word inserted into a book she likes and of course any new store or person. I have tried talking to her about her tantrums and upsets after they are over, and telling her she was scared. She said it to me today---after a crying spell, not a few sentence but just the word---"scared". I wonder if she is getting it?

I am trying too to figure out a way to get her unstuck when she gets stuck with a song. She sings to herself all the time, but if one song goes on too long, she gets stuck in it and can't stop, and sings it through her tears with the most horrified look on her face. Today it was the ABC song. I tried singing another song loud at her, which sometimes works but didn't today, and tried distracting her which almost never works, and finally sang 3 loud notes in a row over and over and over, different than her song and repetitive. It upset her of course but did finally get her off the song.

I feel like I am making up parenting techniques as I go along, with no help or credit for already having 2 older children.

Today in the spare minute I wasn't watching her she went into the bathroom and started playing in the toilet. After I locked that door, a few minutes later she climbed into the cats' water dish to play. It's like having a 1 year old with a 4 year old's mobility. Extremely tiring sometimes to my 42 year old body.l

Silence in the car

When we drive home from preschool, Janey never talks. We are all talkers except her. We drove cross country last summer and there was barely a moment without talking. So it's hard, that 20 minutes without a word from her. I chat away to fill the silence. The other day I was tired of it, and just stayed silent too. She didn't notice or care, in fact, she seemed happy about it. I stayed mostly quiet at home, and she played in the driveway for a long time, seeming to be happy I wasn't bugging her with a lot of questions. She says her little things now and then, but if I don't talk, mostly, she doesn't talk. Should I do more of that? Do I just chatter on to fill the quiet for my own good? Does it help her?