Monday, September 20, 2010

Start of school


Janey started school a week ago. For the most part, it's been good. I hated leaving her the first day---she had such a "where am I? What's going on?" look on her face. But we got good reports that day and the next few. The special ed teacher is out on maternity leave, but the long term sub seems great. Janey is really in love with the aide (who is more like a teacher in terms of education and experience), and she seems to be making friends with the new students.

However, on Thursday we got a call at noon she had a high fever. About 2 weeks ago, the same thing happened---she spiked quite a high fever off and on for a few days, we took her to the dr., no strep, nothing wrong. I took her again last Friday, and again, nothing wrong but the fever, which at that point was not even there either. My sister used to do the same thing---just get a high fever with nothing else. I hope she's okay, and I hope she doesn't have to miss any more school. Today was like starting again. She had the same look on her face---Why am I here? What's going on? Routines seem very hard for her to grasp. I think most kids with autism like routines and schedules, but Janey doesn't seem to, or doesn't get them, anyway. She seems always very surprised by what comes next, even if we've done it the same way for years. She likes new things. I don't get any sense that picture schedules or verbal prompts about what comes next mean a thing to her.

On another note---my older son William turns 16 today. I am so proud of him. He was a preemie, and when he was younger, diagnosed with Aspergers. I don't think he ever really had it---I think it just took him a while to outgrow the preemie-ness. He's been tested several times in the past 4 or 5 years, and no longer meets the "qualifications" of Aspergers, and he hasn't been on an IEP for 5 years now. He's quirky---all my favorite people in the world are quirky. He's one of the main reasons I don't believe in miracle cures. He could be held up as one---at age 2, he was diagnosed as (but we weren't told) having classic autism. But he didn't, and aside from loving him and using school services and just waiting it out, we did nothing extreme---no special diets or therapies or so on. And in knowing him and knowing Janey---there is no comparison. You can be with Janey for half a minute and you know something is up. She never passes for "normal"---he always could, because, well, aside for some oddities, he was. I'm sure we have some kind of gene which pre-disposes us to traits that fall along a long spectrum, from slightly socially awkward to full blown autism. Or, in Freddy's case, to being extremely at ease socially and quite a leader. Anyway, I am so thrilled with the man William is becoming. He's very talented musically, he is tall and handsome and interesting and bright. He is more devoted to the study of Latin and history than almost anyone. He's fantastic, and I am so lucky to be his mother (as I am so lucky to be Freddy's mother and Janey's mother---I am lucky all around)

Friday, September 10, 2010

Not proud of myself

Sometimes I don't like how I feel my personality has changed since facing autism with Janey. Today was an example. I was in a Borders book store, getting books Freddy needed for school. Tony wanted to look around a little, so I took Janey to the kids section. There was a very pregnant lady there with twin toddlers, about 2, a girl and a boy. The girl was extremely advanced (or very short) and was eager to show Janey a book she was holding. Janey of course showed no interest. The girl toddled over and got another book just the same to show Janey. Janey took it, but then decided she wanted the little girl's copy, and tried to grab it. I of course stopped her. The mother had a look on her face like "what a little brat, and dumb to boot" She said in a fake cheery voice "Let's say goodbye to this book area---not everyone likes to share" I felt as I always do like grabbing her and telling her all about Janey. The little girl didn't want to leave---she wanted to interact with Janey. I could almost see the mother thinking "why is she wasting her time with that girl?" Finally she told them they had leave. The boy had no said a word this whole time. I went to pay, and she was behind me in line. All of a sudden, things went to hell with her kids. The boy just started screaming, a wordless scream. I thought instantly---autism. It had ever crossed my mind just looking at him earlier. Of course, who knows, but I think you develop a sense for that. The mother talked to both kids in a very "I've read all the latest parenting books" way "Can you tell me what's wrong? I need you to be quiet. We are in line for a few minutes. Oh, look at that book there!"---you could hear her thinking "Use 'I' statements! Give a time limit. Distract!" None of which work well with you are faced with an autistic meltdown. And I thought to myself---I need to let her go ahead of me in line. There is no need for her to wait any longer. She is in a tough situation, regardless of how she acted earlier. She has a long road ahead of her, whether she knows it or not. But until the very last minute, I felt...smug. I felt glad she was having a hard time. I felt mean things. Finally, I told myself to be a little Biblical about this. Do unto others, and all. So when it was my turn to check out, I waved her in front of me. She was very grateful, and, I hope, a little chagrined about her behavior earlier. I don't know that last part. I still felt angry, but I tried to tell myself---no-one understands, until they do. I don't want to feel mean and angry because people don't understand Janey, because people think that textbook parenting can work on all kids, because people live in their own self-satisfied worlds a lot of the time. I want to be a kind, understanding person. Is that going to be another thing lost to the realities of autism?

Saturday, September 4, 2010

Toilet Training..of a sort

I recently got asked to review a book for Amazon about toilet training autistic children. I'm only half way through, but it got me thinking I should really give the whole toilet training bit another whirl. Janey is in no way at all trained. She has never ONCE used the potty for urine (or once, at school, but I didn't see that and it was years ago). She seems to be to have next to no awareness of when she needs to urinate. She can hold it for half a day, so I think she must have some control, but she doesn't seem to know how to let it go at will. I gave up for a while after a few years of no success. I don't mean I was trying hard every second of that time, but at least as hard as I tried when training the boys, and they were both trained fairly easily. But I know at some point, it just has to happen. So I decided to put her in underwear during the day all the time, and take her to the bathroom every half hour or so. We've been doing that for a couple days now. Still zero success. She wets herself about once a day---she's dry the rest of the time, and she will sit on the potty for a minute or two fairly happily, but never, ever actually pees there. I'm partly motivated by how much pullups cost, and how much she seems to hate them now---we were running through them like crazy as she took them off constantly, whether they were wet or not. That's a lot cheaper with clothes, and I don't mind washing them and cleaning up. So I guess it's worth a try.

The other full court press I've been trying is teaching Janey to talk about feelings. That one is going a little better. When she cries or is upset, I right away rush over, say something like "Oh, no!" and then say "Are you sad or angry?" She picks one or the other, I think probably at random, and then I ramble on about the one she picked "Oh, you might be sad because you wanted Mama to snuggle with you and I was doing something else!" or "You might be angry because I said no more videos right now!". I'm trying to teach her that she can express why she is upset, and that being upset usually has a reason, even though I'm not always sure it does for her. I'm trying to talk a lot about happy, surprised and scared, too. I point out my own feelings to her a lot "Mama felt happy you picked out your own shirt! Mama was scared when you screamed really loud like that!" Like so many things with Janey, it's almost impossible to know what's getting through, but often months later she surprises me with knowledge of something I said long ago, so I can hope.

9 days till school starts!

Wednesday, September 1, 2010

Another little note

Tonight I heard a loud bang from the other room where Janey was playing. I called out "what was that banging sound?" There was a little pause, and then Janey said "None of your business!" I was thrilled! Of course not at the freshness, but that she answered and gave a typical fresh 6 year old answer! I have no idea where she got that. It was her second question answering of the day. The first was after we went to the town pool for a bit. I asked her when we got home if she had a good time, and she said "It was so fun". I'm really happy with the slight increase in answers lately. We've done little all summer but hang out and have me talk at her, so maybe a little is sinking in.

Three hardest things, three best things

I got this idea from another person's post I read recently---what are the three hardest things and the three best things in my life?

The three hardest---well, number one would be autism. I hate autism. Autism is not Janey, any more than diabetes is Tony or thyroid disease is me. Autism for whatever reason hit my little girl hard, and won't let go. I hate it.

Number two would be not having the funds to do everything I'd like to do for Janey. I don't crave money for myself much, I can honestly say. I'm not someone who wants or needs what money can buy much---I've often thought if I had money for a mansion, within days it would be run down and messy and I would like it no better than my house now. But when I can't do something for Janey because I can't afford it, or worry about the co-pays, or just know it will stretch the budget to breaking point, that is hard.

Number three---tiredness. How I'm always, always tired---partly a result of Janey so often waking in the night, partly because I'm on edge so often, partly due to a thyroid that doesn't work much at all, some because I have insomnia often, partly because I'm overwhelmed. If I had more energy, I could do a lot better for my family.

And the three best things? Those are easier than the worst things!

First, my family. My husband, who is 100% totally a family man, my sons, who are two of the most amazing kids in the world and my beautiful, fascinating daughter.

Second---life's little pleasures. They don't get enough credit. That first cup of coffee in the morning, the word games on Facebook, a comfy bed when I'm tired, the first feel of fall in the air, good television, of course and hugely books and reading, a great lawn sales, a long talk with a good friend on the phone---lots more. At this point in my life I'm not going to be having a lot of life's BIG pleasures---fancy vacations, brand new cars, elegant meals out---but I've got more than my share of the little ones.

Third---the luck of living in this place and time. I know how lucky I am compared to so many people in this world, and so many time periods in history. Even 50 years ago, Janey would probably not be able to go to school at all, instead of going to the amazing school she does. Heck, 100 years ago that wouldn't be a problem, as I would be long dead from my first pregnancy, Tony would be dead from diabetes, Freddy would have died from the terrible asthma attack two years ago---we'd be a whole section in the cemetary. I try hard to keep in mind that chance of time and place have made me very, very lucky.

And now to try to sleep!