The first is the raw one. How's it going? Not well, really. I am feeling more overwhelmed than usual lately. This is probably directly related to Janey's sleep. It's been awful lately. Last night she slept from 1:30am to 5am. That was it. She is understandably crazy today, but still won't sleep. We are to blame for the extent of this particular night's insomnia, probably, due to a lack of chocolate vigilance, but overall, her sleep has been awful. A lot of days have passed in a haze that is caused by sleeping very little at night, for her and for us.
Her behavior has been volatile lately also. It's the tough time of year, between regular school and summer school, when there is no rhythm to the days. Both boys work, so sometimes they are home, sometimes not, Tony is now on vacation for a week (thank goodness) but last week, with the boys in and out and Tony at work during the days and Janey and me at loose ends---it wasn't good. Janey freaked out regularly, and her freaking out is tougher and tougher. It involves a lot of biting of herself, flailing around that often accidentally or not hits me with elbows or head, flinging things in anger, trying to break things, all that fun. And of course screaming---loud, insane sounding screaming.
I could do better with her, but frankly, a lot of days I'm too tired. If I don't sleep, I am not in a good way. This is the case for everyone, but I have a thyroid that barely functions, even on close to the highest dose of thyroid replacement given, and without sleep, I seem to exist in a zombie state. I just try to get through the day. So we do little things---a walk to the store, playing outside in water, watching YouTube, reading to her when she lets me. The other day we went to a movie that the local autism agency, TILL, hosted. It was the first time Janey had ever been to a movie theater, and she did fairly well---she lasted about 40 minutes. That didn't exactly eat up the day, but I felt better having done SOMETHING with her.
I think I've reached a point, after about 7 years of the autism parenting life, that I am depleted. I am out of enthusiasm, at least for now. I am not as able to rally any more. I love Janey more than ever, and that love makes it even harder, because I am sad for her. I am sad that she is so unhappy. I am sad she is not making progress. I am sad at the limits autism has placed on her life.
However, the second answer to the How's It Going question is the one I need to focus on. The boys like to talk about first world problems, and they are so right. We have enough to eat. We have a place to live. We have medical care. We have schools. I have a wonderful husband with a steady job. I have two sons that anyone on earth would be proud to have, sons with an unlimited and bright future. I have books and word games and thousands of movies and TV shows I've never seen and would like to see. I have my cats. I have some amazing friends. I have so many things that many people in this world will never have. And to quote the kids again, YOLO. You only live once. Despite it all, I am extremely lucky, and that is the answer I should give when asked how it's going. I can't say I always will. I can't say I always remember how lucky I am. Especially when I am bone tired, I forget, and I need to try not to.