I don't like summer. I've never liked summer, although growing up in Maine, I couldn't totally hate it, as a Maine summer is the most glorious thing there is. But a Boston summer? You don't often hear that praised, and for good reason. Summer here tends to be muggy, almost every day. Boston feels like a place you get away from in the summer, if you can. But with Janey, we usually can't. Summer feels endless to me, every year. I feel like I just survive until September.
I try every year to have a better attitude about summer. When it's not actually summer yet, I plan in my mind how this year is going to be different. I will take Janey some great outdoor places, early in the day before it gets too hot. I'll take her great indoor places in the afternoon. I will think of activities she might like at home. I will try to do workbooks with her. We will play with water a lot. I will spend long days just being with her, doing whatever makes her happy.
Well, it worked for Monday, the first day of what I see as summer---a day without school where Tony is at work. Monday was a great day. Janey was cheerful all day. We were outside a lot, playing with a bucket of water toys. When we were inside, I did as she wanted me to do---we did a lot of snuggling, she watched a reasonable amount of videos, and we actually read about 10 books. That is new, that Janey will have enough interest in books to sit and listen to them, and often want them read again. We went to the drug store, and Janey actually asked me before we left for a shovel "Want shovel?" and then when I asked her to repeat it, thinking I might be confused, she said "Want to shovel some things?" and made a shoveling motion. Of course I got her a pail and shovel beach set. Later in the day my friend Maryellen came over, and her daughter Julia. Janey said "Julia" for the first time in many, many years, and talked a lot to both of them, and was just a delight. I kept thinking that night that maybe we had turned a corner. Maybe things would be easier from now on.
Then Tuesday. A day from hell. Janey woke up cranky, and then I had to drag her with me to take William to work, which she objected to by screaming the whole way there and back. And she pretty much screamed the rest of the day. I tried all the same things that had worked so well on Monday, but Tuesday was no Monday. By about 2:30 I was feeling completely overwhelmed. I actually asked Tony to come home a little early, something I haven't done in a long, long time, because I was at the end of my rope. Freddy was holding a party for 20 of his most intimate friends on our 3rd floor, so I couldn't leave the house with Janey, even if I would have thought of attempting that with her in that state. Of course, when Tony got home, a little early, Janey was having a rare calm moment in the back yard, and she was much better all night with him home.
It's possible that Janey realized on Tuesday---"Hey, this is the second day with no school and no Daddy. This could be the start of a whole stretch of days like that. I am not going to like this" So this morning, I did my monologue talk to her about summer. I explained that summer is when Janey doesn't have school (I didn't get into summer school just then) but Daddy still has to go to work (and I didn't get into the two separate weeks he is taking off), but that he still comes home at night. I told her William and Freddy are sometimes at work in the summer and sometimes home, but that Mama is home with Janey always (to which I bet she was thinking "wow, how did I ever get THAT lucky" in a sarcastic way). We were snuggling on the bed as I talked, and at the end, I said "it's like right now. Mama is right here..." and she jumped in "next to Janey!" which made me think she was listening.
I then tried to make today as much like a Daddy day as I could. Tony spends a big amount of the day cooking with Janey. It's something they both enjoy. So I went out while the boys watched Janey and got ingredients for two fairly complicated recipes, and I spent a lot of time in the kitchen, talking to Janey about what I was doing and having her "help" when she could. The day was better than Tuesday but not as good as Monday. There were certainly some screams, but overall, I didn't end the day feeling desperate.
I still think, in a small way, that things are turning, are getting better. I have to believe that. Janey's screaming moods don't last as long as they did, and she just seems more connected. I loved the reading, and I loved her asking for the shovel. I guess part of the problems is that I tend to be very influenced by the here and now with her, not the big picture. It's hard to live in a big picture mode with a child that is so very in the moment. When Janey screams, it's hard to think "well, at least it will probably not be for days". But luckily, I guess, when she is precious and engaged and happy, it's hard to picture just how tough it can get. Maybe that is a gift that being an autism parent brings after a while---short-sightedness. It's like how mothers forget childbirth or the very early non-sleeping days with a baby. You have to forget it, or you would never have a second child, to say nothing of a third or more. I have to live in each day with Janey, because looking at all the days to come for the rest of my life (and the days she will live when I am gone) is too much, too overwhelming.
So here's hoping for a summer that is much more like Monday than Tuesday. But I'd settle for Wednesday.