04 August 2010

There are bad days, and then there was today. Awful! Totally understandable. And some very good lessons. But whew, we made it through.

First, Cheshire left late this afternoon. She is flying back to NYC tomorrow. She has been my rock, my incredible support for the last week. I so appreciate her selflessness. I miss her badly already.

But on to the day.

We did a lot of walking again today. It was not the beautiful sunny day that we thought was promised -- it dripped, it drizzled, it rained, it stormed. We broke down and bought two umbrellas. We got wet. We had put most of our warm clothes -- to the extent that we brought warm clothes -- into a laundry because we needed clean stuff, and so were a bit chilly for most of the day. Julia hate being wet, doesn't like being chilly, and is not a big fan of walking.

And there we begin.

I tell you, I can always look back and see how Julia's melt downs are triggered. I see it clearly here and now for today, but minute by minute, it is hard to keep her life regulated. And actually, my best job is not to keep like regulated around Julia but to teach her to regulate herself when life gets mucked up and she has to deal with it.

But what a job.

So, we took our time getting out of the B&B this morning hoping that the clouds would clear and the sun would come out. Cheshire wanted the beach so badly today. So did I. But the sky stayed overcast and it was not going to be warm. We decided to walk to Schanklin which is two towns away -- about an hour's walk. We walked along the beach walk again and I was having a pretty good time. Julia was a bit bored and cold. Not good. It started raining and although we wanted to make the town before we stopped for lunch, we stopped in a cafe, ordered tea, chips and a bowl of pasta for Julia to wait out the rain. The rain won.

But when we went into the cafe, Julia took out her collection of dinosaurs. She has been carrying her backpack everywhere. It is usually stuffed with dinosaurs, a squirrel family, pencils and paper. Today, she took only dinosaurs and so took them all out to play with. One big problem is that she just pushes the dinosaurs away when the food comes. Sometimes they fall on the floor, sometimes they get mixed with dishes, silverware, etc. So, the change of losing one of the dinos, especially the little ones is pretty good. I have tried to balance keeping everything together for Julia with giving her responsibility for what is in her backpack. A fine line.

We left the cafe, bought umbrellas and made our way to get our laundry, to buy a few things to bring home for others, and to find a place to have lunch. As we were looking at the new menu, Julia discovered she lost a dinosaur. Losing toys is always hard -- hard when it is at home and the toy must be somewhere, but impossible when we are out and Julia's knows that the toy is somewhere that we have left. She lost it. She insisted that we go back. I said no (it was far away and it is not clear that she would find this tiny dinosaur) and had to go to the bathroom. She kept insisting with Cheshire and then started crying and melting down. Cheshire took her outside, tried to calm her down, and came back into the restaurant. She started again when she say me and I took her outside and held her on a bench in the beer garden. Oh, once again, I was disturbing others, but we sat, Julia in my arms (some strong holding, but much of the time, she had her arms around me wailing). It took a long time to calm her down, and we had a tough lunch and bus ride to our B&B.

But the up side of this awful time is that Julia was able to find regulation for herself in some way. She did finger pulls and presses when she began to calm down. She did jumping. She knew she was angry and when she was sad. And maybe most important, I have been lax about her medication. I have let her get away with not taking her fish oil for the last week and a half and she has missed a few doses of guanfacine. Add to that all the stresses and of the day and the trip, and I see some pattern.

All hard, but not out of nowhere.

I don't know if I've said what I wanted, but I am tired and need sleep.

A note to my commenters: Thanks for thinking and taking the time to write. I am thinking. You are all correct. I will go on thinking. There is more leave taking that must happen before I will know anything.

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