School starts tomorrow, and I must say it's not a moment too soon. I don't like summer. I never have, and I don't think I ever will. These last few weeks of summer with Janey have felt brutal.
I of course feel right away I must modify that. There have certainly been worse times with Janey, many times, times when she was a lot more unhappy or manic or angry. But in terms of sheer endlessness, these few weeks have few equals.
I have been taking the advice of a lot of my friends I've met here, and I thank them for it. I've been trying to be easier on myself in terms of what gets us through the day. TV is what gets us through a lot of days, and I realized lately I have a tremendous amount of guilt about that. TV equals bad parenting, in my mind. But in some ways, that is a selfish view, because for Janey, TV equals happiness, often. She adores her shows. Her default position in the house is in front of the TV, standing up and dancing and jumping. She has strong opinions about shows, and even episodes of shows. It's not random watching. She'll get an idea she wants to see some certain episode, and she uses every bit of her available communication tools to let me know which one---a combination of phrases, pointing, and sometimes screaming. I am pretty sure she knows all the dialogue of her favorite episodes of shows by heart. She knows when the scary parts are coming up---she'll start screaming in advance (and by scary parts I mean often very, very mild scary, about as scary as Kipper or Angelina the Ballerina or the like gets). She interacts with the shows, more than with people. So---I am trying to relax and accept that. But I'll admit it. I feel like a bad mother when the day is mostly TV, often.
I think what most frustrates me is how hard it is to go anyplace outside the house with Janey. It's partly that I get cabin fever, although I have a large tolerance for going no-place, but I do have my limits. I want to get out of the house, but with Janey, it's so hard. It's a tough thing to admit to myself that it just really isn't safe for me to take her most places on my own. It might be fine for 95% of the time, but the 5%, when she gets upset and starts to freak out, and screams and bites her arms and sometimes, once in a while, lashes out at me or at possibly even someone else---that is not a good scene. Taking Janey places is a two or more person job. If there is backup, it can be great. I'm thinking about our trip to Ohio, or the wedding, or visiting Maryellen. If there's two people around or more, we've had some very successful outings. But these weeks, it's been just me, and that's tough. Again, I'll admit that makes me feel guilty. I have an overactive inner voice, one that says "You are just lazy. You aren't trying hard enough. You just want to stay home and sit around" I think it's time I told that inner voice to shut up and look at the facts.
We do one trip every day---the short walk to the "ice cream store", the convenience store near us. I've been remembering the wise words of many of you, and realizing that to Janey, this is a special thing, a routine she loves, even if it might not seem like one to me. She loves all the steps---getting shoes on, me talking about what I need to do before the walk, the short walk to the store, during which she only needs to hold my hand a little, the time in the store, making the choice from the rows of chips or the freezers of ice cream, going to the counter, getting attention from the cashiers (they seem to be an extended family from Bangladesh, and they are very sweet to Janey) my prompting her to say "thank you" or "goodbye", the walk home, the time in the back yard eating her treat---when I think about it, it's a lot of social skills and self-help skills tied up in a short time.
So, when I think about it, these weeks have probably been harder on me than Janey. I think Janey is okay. It's me that is stir crazy and sick of kids' TV and wanting to be able to go into another room without fearing toileting accidents or food thrown all over. That is why I think of the first day of school as Mother's Christmas---forgive me the sacrilege. I talked to Janey's teacher for the year yesterday. It's her first man teacher, and the same teacher she had over the summer, the husband of the ABA supervisor who has been one of the most wonderful people I've worked with in the schools over the years, and he seems like a wonderful teacher. I am looking forward to Janey's 6th grade. I think she is too, as much as she looks forward to things. So I say goodbye to the summer of '16. I won't say good riddance, but I will say I'm ready for that goodbye.