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.