Friday, November 27, 2009

Surprises from Janey's mouth

We have to be so careful with everything we say, because although Janey doesn't say the things we want on command, she listens to whatever we say to find words that have a ring she likes to them. The other day, Tony was telling a story about what some women said when he went out with a bunch of people from his high school class. They were describing themselves in high school, and used a colorful phrase. Janey was somewhere around, but gave no indication of listening to the story. However, this morning I was still in bed, and she came over and looked me in the eye and said "Crazy b*tch". It was a bit startling, to say the least. At first we felt worried, like perhaps she had heard that from someone talking to her being mean, but then we remembered that conversation. But how she realized it was a phrase that could shock, and why she decided to use it on me---who knows? Yesterday she made it through about half an hour at the buffet restaurant we went to for Thanksgiving, then I drove her home before she could freak out and ruin many people's meals. On the way home she was crying, and I asked her what was wrong, more just to make conversation as she never will say. But this time, she said "Willy is a naughty boy". I've never heard her call William Willy before, and I've never heard her say naughty, and I don't think William did a thing naughty during the meal, or really interacted with her at all, but somehow, that was her answer.

Sunday, November 22, 2009

Long Week

The last week was fairly tough. Janey was having a bad week---awake in the night crying, not talking much, upset all the time. Things weren't going well at school either. Finally Friday I kept her home, just to give the teachers a break and to let her do nothing all day. It seemed to break the cycle a little. The school called mid-day, actually the woman who is her ETF, to talk about how she was doing. They all had been concerned about her mood swings, and I had finally mentioned something about it in a note to school, and now they all wanted me to call Dr. Marshall, her pediatrician, to ask him about having her evaluated for bipolar disorder or manic-depression. I did call him, although it was a hard call to make, and I have numbers to call tomorrow of two psychiatrists. I have thought deep inside for a while she might have something like that, but it's along with the autism and the retardation, so it's going to be hard to diagnose and treat if she does, and I am still not feeling very up on medication, which confuses everyone as I've always been someone that believed in medication. But Janey is only 5, and I have had some bad experiences with drugs I felt were carelessly prescribed, including the Aldomet during my pregnancy which I truly feel is the cause of many of Janey's issues, if I might be totally honest. Also Freddy's racing heart and possible drug induced Long Q-T syndrome after his bad asthma attack. So I am not going to trust a doctor on medication unless I really look into it quite a bit first. And I also don't know how it can really be separated---does she get upset because she can't explain what's wrong? Can she not explain what's wrong because she's upset? I feel sometimes like people want other people on medication because it's a way to feel like something is being done, and if you don't do it, they can kind of say to themselves---"Well, she won't let them give her medication, so she has only herself to blame if Janey is that tough"---which is hard on people, but as I've said lots of times, here is the only place I pour out my heart about autism issues.

Then yesterday we got a Fex-Exed report from the Mass General study we have been in, about Janey's testing. Talk about a downer. Pretty much, she tested as low as you can test on almost every aspect they tested--- less than the 1st percentile. I think they were using a test for "normal" kids her age, and it really couldn't even test her, she was too low functioning. Even areas like her receptive language that I had thought she did fairly well on, she really didn't. It was a little bit of an eyeopener. It is making me think we need to rethink how she is being taught and what our goals should be. I am starting to think her learning things like colors and numbers and so on is not really a realistic goal. I've thought for a while that her speech is a little deceptive---because she does talk, but mostly in set phrases and delayed echolalia, people think she has more potential than she actually does. I think she talks as much as she does because we are all huge talkers, and that is where she gets constant stimulation---verbal areas. If it weren't for the residual speech she has, I think she would be seen more realisticly---as a child that probably is moderately retarded and needs to mostly learn life skills. And I think she could do well learning those, and perhaps someday some very basic academic skills.

I am facing the things that are toughest for me---being sure of my own convictions and not being swayed by the disapproval of others of the routes I might choose to take with Janey. I know that I know her better than anyone, I love her more than anyone except Tony, and I want what is best for her. So why is it so hard for me to just be sure of myself in terms of what I choose to do with her? No-one else lives with her day and night. If I ever have enough belief to say prayers, it will be prayers for the courage of my convictions.

Friday, November 6, 2009

When we really connect

I love it when I feel like Janey and I really connect, really share a moment together. The best time for that is in the car, when I play music. I made up a CD of Christmas songs, even though it's a little early for that, and prepared for her to freak out the first time I played it, as she usually does, but instead she was so happy. None of the songs were totally new to her, which helps. I look at her in the rear view mirror when she is enjoying music and we look right at each other and smile. I feel like it's one of the few times we connect with each other without having to talk. When we got out of the car, she was already singing "Hark the Herald Angels Sing". Of course, tonight she got singing it again and got "stuck" on it, something that hasn't happened much late, when she is singing something and can't stop although she obviously wants to, and she get more and more upset.

The other night, she asked me for a necklace,which surprised me as I didn't think she knew that word. I gave her one and she put it on and said something like "Oooh..." which doesn't sound like much, but she said it in such an engaged tone, exactly like a woman would say that if she put on a dress that looked just right or something. She was so happy in such a "normal" way. She went and looked at herself in the mirror for a long time. That is an area where she is probably more mainstream than me. She loves to check out her clothes, hair, accessories, in the mirror, and turns around to see how it looks from all angles.

She gets very upset every day right when she gets home from school. I remember my mother saying my sister used to do that too, like letting out all the tension of the day. I try to be understanding and have food ready and give her all my attention, but I think she needs to freak out a little anyway. I would not think of school as being tension-filled for her, but I guess it is.