Afternoon better

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

Unbearable

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

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

Last day of school

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

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

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

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

Ideas for the summer

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

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

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

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

Tougher days again

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

Thoughts at the ice cream shop

I took Janey for ice cream after school today, partly as a treat for going back to school and partly to keep her out of the house so Tony could fully concentrate on the World Cup match with Italy playing. As I sat watching her eat her big bowl of chocolate chip, lots of other kids came in and got ice cream. I had some moments of just being very proud of who Janey is. Although I wish more than anything she could talk more, be "normal" more, socialize more, the kids that were there that day made me think that she's got some pretty good points. First a couple of bratty little boys came in with their snobby looking mother. She ordered them junior cones---they screamed because they didn't want a kids size. They said they wanted strawberry, and as the scooper began scooping, they decided they wanted to know all the flavors. Mama had them read them all themselves, although it took forever, surely to impress us all that her kids who appeared about 4 and 6 could read. Finally they picked a flavor, and then had a fit again about the size, freaked over the wrong kind of cone and finally took the ice cream with nary a thank you to the scooper or their mother. I thought about how Janey was happy to be there, happy to have ice cream of any size, the flavor I picked for her, happy although she didn't have options. I wish she could pick. But seeing them, I realized being able to pick, and talk, and read, and argue, didn't necessarily make them too happy (or pleasant). Then a man came in with a girl that looked just about Janey's age. She didn't want ice cream at all. She wanted to stand in the door and let the AC out, to run out toward the street despite her father saying no over and over, to put her grimy hands on the window despite the owner asking her not to, to generally make everyone in the place annoyed. Another girl that seemed bright, seemed "normal" but wasn't happy or making anyone else happy. I know a few days ago Janey would have been screaming. But a few days ago, I would not have taken her in public for ice cream. I know better---she wouldn't enjoy it, I wouldn't enjoy it, no-one in the place would enjoy it. However, those "normal" kids weren't enjoying themselves or letting others enjoy themselves either (except Janey, who engrossed in her ice cream didn't even notice them). I don't know what the conclusion is here. I guess it's partly a reminder to me---be grateful that Janey can eat, can walk, can have happy moments. Don't always feel envy for others with more standard kids. Sometimes, I'm the one proud in the ice cream shop.

Back to school

Janey went back to school today, after her appt. with the psychiatrist. The appt. was okay---I know that psychiatrists mostly just talk about medication these days. I can't really picture any kind of therapy with Janey anyway, with her limited talking. It was interesting---she cried hard for the first time in a few days when we walked into the waiting room. She really doesn't like doctor's offices. It was kind of good in a way to see her that aware of her surroundings. The doctor said we don't have to continue the medication full time---maybe we should try it for a month and then try without it for a month, which I am down with. We didn't increase the dose last night as there was really no need---she's enough better and calmer, and is sleeping. It's been wonderful to have her not cry all day. She was happy to be at school and it was great seeing how happy everyone was to see her. I could have stayed there all day just seeing her happy face with the other kids, and how sweet all the teachers and staff are with her. I do realize how lucky I am that she is in the school she's in, full of people who truly love her, and people I have known for many years now, from before she was a twinkle in our eyes. I hope the day went well. I will pick her up today, although Tony usually does on his days off, as it's World Cup time and Italy is playing---an event of supreme importance.