My morning so far

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

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

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

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

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

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

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

9am---we drive home.

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

Splash Park

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

Daily Scream---but okay!

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

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

Afternoon better

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

Unbearable

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

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

Last day of school

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

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

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

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

Ideas for the summer

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

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

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

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