The day after? A day that feels like a lost day. Janey wakes at 7 am, ready to go. She is a little grouchy, but not severely. She has a cheery ride to school, listening to her favorite song lately, The Battle Hymn of the Republic, at least until we get to a version she doesn't like, which causes her to scream like she's in agony. We are almost at school anyway, thankfully. I warn her teachers about her lack of sleep, in case she gets sleepy, but I know she probably won't. I go home, and through sheer force make myself do the minimum I need to do---some laundry, some dishes, some packing things to mail. I wouldn't even do those, but the boys have activities all the time that require certain clothes, and when I slack off, they have desperate mornings looking for what they need. I try to keep my nap at a minimum. Napping lately makes me depressed. When I wake up, I feel disoriented, like someone has stolen time from me. Tony picks up Janey and brings her home. She is in a bad mood. She eats a lot, as she has been lately, but as of right now, 7 pm, doesn't seem sleepy. I don't know how that is possible. She was up from 11 pm to 3 am. My mind is a hazy cloud.
When we have days and nights like this, the task of raising Janey feels almost impossible. It feels like it will defeat us. I have to make myself keep the good times in mind, the times that Janey is happy and fun to be with and although vastly different than most girls her age, not necessarily tougher to be a parent to than any other child. Those times are great. But when we are sleep deprived and Janey is crying or hysterical or manic, those times fade in our mind and all we can see the present and the future, the present so tough we can barely go on, the future looking far from bright.
I don't like to be discouraging here. I know people read this that are just starting their journey of autism parenting. My story, our story, is not everyone's story. Sometimes I am tempted to leave out days like this in telling our story, but that is not honest. I don't think it's fair to Janey, or to the other families out there, to pretend or to be a Pollyanna. Hopefully, the truth tomorrow and in many days in the future will make for more upbeat reading.