The hardest days, the hardest decisions

This is a hard post for me to write. I've been putting it off and even thinking about just giving up this whole blog thing. But I want to be honest and tell about the last week or so.

Starting about a week ago Thursday, Janey entered some kind of incredibly tough phase. She was literally screaming all day and most of the night. I don't mean fussing, crying off and on, I mean screaming, hysterically, all day, all but a few hours of the night. She would stop only to say things like "I WANT MAMA" even if I was right there, "I WANT A BABA" only to toss it aside if we gave her one "I WANT A VIDEO" only to cry at anything we put on. We were getting no sleep. We were literally in despair, trying to figure out how to make her happy. It got worse and worse and worse as the days went on. Finally on Wednesday, we got a call from the school that they thought she was sick. I knew she wasn't sick, physically anyway, but I knew how it could seem that way. I picked her up early, and that was the worst day of all. She was so upset that whole afternoon and night, and slept almost not at all. Tony and I were just looking at each other without a single idea what to do next. The boys were unable to do homework, we were not able to have even a minute to talk as a family, and meanwhile Janey was in such mental pain it was heartbreaking to watch. Tony stayed home from work Thursday---he hadn't slept. We called her pediatrician first thing---to rule out anything physical and to just ask for any help he might have. She was so upset in the waiting room that nurses kept coming out to reassure us we would see the doctor soon, even though it was only a few minutes wait. When her doctor saw her, he was visibly shaken, and he's been a doctor for about 30 years and has known our family since the day William was born. He did an exam---as I thought, her ears and mouth and lungs were all fine. He said he thought it was possible she was hearing voices---based on how she was holding her ears and just based on a hunch, from being a doctor for a long time. I've never, ever seen him go out on a limb like that, and I am inclined to think he might have been right. He put in a call right away to a psychiatrist, and said he didn't want it to be more than 24 hours before she was seen. We went home and tried to comfort her, without success. Finally, we got a call from him that evening---he'd talked to the psychiatrist, who will see her Monday, and the psych. recommended we start her on medication---Risperdal. I knew a lot about Risperdal---it's the drug I figured would be recommended if one was. And it was exactly the drug I was completely opposed to for a long time. But the week in what could only be called near-hell, for both Janey and us, made me realize that it was my own reasons, and not the best interests of Janey, that was keeping me from being open to it. No-one, NO-ONE, could live long term the way we lived that week. And so I said, yes. We will try it.

Tony picked it up that night, and we gave her her first dose that bedtime. She went to sleep after about 45 minutes, and slept 6 hours---much longer than any recent night. Then she woke up, but didn't scream, for about 3 hours. The next day was mixed. She had a long time without crying in the morning, but by afternoon was back to a great deal of screaming, and the evening was very tough. We gave her the second dose that night. She slept from 8pm until 4am, then woke up screaming. She cried for about 2 hours. Then....no crying all day. NONE. In fact, a great deal of smiling--a happier, more relaxed Janey than I think I have ever seen. I was holding my breath. I really deep inside did not WANT the medication to work, so I could say I tried it and it did no good. But it would be impossible not to notice the change today. We even went to dinner at fast food Mexican. Janey was happy the whole time, and happy to go to a store afterward, and happy in the car, and talkative, and answering questions, and just plain RELAXED. I have never really seen her relaxed.

I don't think it will last. It's too much for a medication to do. But Tony and I both said it has taught us something valuable---to see that autism, or retardation, is not the thing to fear. If Janey can be happy, can enjoy life, can have normal emotions and can feel what it's like to be relaxed, then all the rest we can take. It doesn't matter much if she ever reads, or "passes" as normal. If we can all be together as a family and enjoy each other's company, then all the rest is icing on the cake.

I still don't like the idea of giving her medication. But I know people sometimes need medication. I would be very unhealthy without daily thyroid replacement, and Carrie would not probably be around at all. Tony can't live without insulin. Freddy would be gone without his asthma medication, quite literally and heartbreakingly. And so perhaps Janey too has something missing in her makeup which medication can help with. I'm not sure yet. But I can almost hope so.