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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.

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