Remember all those times I said we'd had the toughest night ever with Janey? Well, forget all those. Last night holds the new record.
It really started night before last, which I wrote about here. She slept very little that night, and woke up for good at 5:30 in the morning. She wasn't extra upset or screaming a lot, just awake. And Sunday wasn't a bad day at the start. We went to our favorite thrift store, where she was cheerful, we had a good lunch, and then I played with her a lot while Tony watched the Patriots lose. We were a little surprised she hadn't napped at all, with the very little sleep she got, and I assumed once the second football game was on at 7, she'd been asleep for most of it. Tony went up to watch the 2nd game with Freddy, and I worked on getting Janey to sleep. By 10, when she was still going strong and starting to get cranky, I asked Tony to take over. I slept a couple hours, and was woken up around midnight by Janey's screaming. She hadn't slept at all. Then the fun really started. From midnight on, Janey screamed almost non-stop, the scream that is so incredibly loud and frantic and awful to hear and I am sure, awful to scream.
I can't imagine how tired Janey must have been at that point, but I know how tired I was. I made coffee three times, in a desperate bid not to give into sleep. She didn't even drowse off for a second---just screamed. A few times, she put on Netflix and flipped through shows, watching them for a minute or so and then changing them. She asked me over and over to snuggle with her, and would stay with me for a brief moment and then jump up and scream. I took her over and over to the screaming room, got her calm enough to leave, and then had to take her right back.
Tony got up about 4. By that time, we were both in a state that is hard to even describe. It was bad enough we talked briefly about going to the emergency room, although we know from everything we've read and heard that would do exactly no good. But she had been awake so long and was so frantic I just started to worry about how much of that the heart and mind can take. We kept counting the hours she had been awake. Finally, at 5:30 in the morning again, exactly 24 hours after she had last slept, she closed her eyes, although we could see she was still fighting it. I don't think she really slept until about 6. And she slept...2 hours. Until 8. She has been awake since then.
Today has featured a lot of screaming, with some quieter moments. She is still edgy, still obviously in some kind of manic type mood, still upset and tough enough that I think 99% of the parents out there would call today the worst day they'd ever had with their child, but for us in the very very exclusive 1% club, which I think most of you parents reading belong to, it was just a regular bad day.
Where do we go from here? I have no idea. She is on medication, several kinds that are commonly prescribed for autistic kids to help them calm and sleep. I am starting to feel like they do very little. We are giving her melatonin, which we have not found to do much of anything. We finally gave in last night and tried Benedryl, which our pediatrician has said is fine to give her in cases like we were in, but it also seemed to have exactly no effect. As much as I was possibly able, I was consistent in my approach to her. We can't let her scream it out in a room alone---she is too unpredictable and self-destructive for that. Our friends and family are not up to taking her for a night. The only respite we've ever found was a bust---not able to provide enough care for Janey. I really, truly don't know what can be done to help her and help us. I guess we just keep going.
Last night, in my desperation, I looked on Google for "autism" and "screaming". Most of what I found said in one way or another the same thing "You need to figure out what your child is trying to communicate by the screaming". I am trying not to swear here. I'm not a swearer. But @)#&%#)$(, what do they think anyone with an autistic child tries to do, day and night? They try to figure it out. What do the "experts" think? That we just say "Boy, I can't stand that stupid screaming and crying. Obviously it means nothing, so I won't try to interpret it!" Maybe the most telling thing was that in my searching, I found several of my own blog entries from here. It's a little scary to me to think of some other parent searching and finding something I'd written, when I have so few answers. If you are one of those parents, I'm sorry. I know what you are feeling, but I don't know what to do. I don't think anyone really does, for what that is worth.