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Tuesday, September 30, 2008

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.

Monday, September 29, 2008

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.

Sunday, September 28, 2008

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.

Tuesday, September 23, 2008

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!

Thursday, September 18, 2008

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.

Friday, September 12, 2008

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.

Thursday, September 11, 2008

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.

Wednesday, September 10, 2008

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.


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.

Wednesday, September 3, 2008

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