So poor Sarah has been stuck at home for the best part of a month at the worst possible time of year for her.
It's her Birthday a week before Christmas. It is very hard for Sarah to cope with the trappings of her own birthday, she understands the whole cards, gifts, telephone calls, birthday cake routine and likes it applied to other people, and she is damned useful to have at hand when you need to be reminded of an exact birth date coming up, since she asks everyone she meets how old they are and when their birthday is and then amazes them by telling them what day of the week it is going to fall on next and if she's in the right mood what day of the week they were born on and some how never forgets these facts. But when it comes to her own birthday she just wants to get it over and done with, you can see the discomfort of the whole event in her face and it takes a lot of parental clowning around and tomfoolery to lighten her up!
Christmas just means more presents, dinner at the wrong time, and little sister home for a few days, great for all concerned except Sarah who is just going along for the ride. She already knows what is in the presents wrapped up under the tree because she has been very specific all year about what she wants, the list has started already for next Christmas. These are not all big expensive items, she will hear a song on the radio and say she wants it so I make a note of it, download it, save it in a special Sarah play list on iTunes and then burn a few Cd's come December. If you ask her what she wants it is always practical stuff like nighties and pyjamas, she had a red handbag this year that she was very specific about, but I don't think she would have even considered such a thing but for the fact that a strap came adrift on the bag she had been using. If something breaks or goes wrong, regardless of the time of year, if it can't be replaced immediately she always says she'll have it for Christmas or her birthday, and yes, I admit to taking advantage of this as the year progresses. Watches are the only exception, but they are a blog post all of their own, in fact I'm pretty sure I did one with photos last year! She doesn't actually cope to well with surprises so we avoid them and as long as she has a pile of presents to unwrap, she knows what she is getting and no one has more than her, she is happy.
What she isn't happy about is the breaks in routine and the cancellation of events because of the weather. This latest run of cancellations started in late November when a birthday disco was cancelled because of torrential rain and a hurricane blowing making the venue impossible to get to, we did get to the regular monthly service users disco in early December, but the Christmas disco was snowed off. Regular disco snowed off in January, along with the re-dated Christmas disco, and of course the Day Centre had been closed more or less completely since 21st of December until Monday this week. Sarah doesn't like the snow, she can't walk in it with any confidence. So she has been stuck at home getting cabin fever! When Monday and the transport arrived we foolishly thought we were headed back on track but no, she changed her mind about going the minute I opened the door and took a lot of persuading to get on the bus. I get a phone call at 9.30am from the Day Centre saying she wants to come home, can I come and get her.
I don't have a car, I explained to them that it's a two bus journey to get to them and I would be at least an hour getting there. She must have been giving them a really hard time because I was told to hold on for a second and then told they would bring her back in one of the centre's mini buses. She was back home by 10.00am. I don't think Sarah, for all our efforts at preparing her for a return to normality, was able to cope with what had become a change from what had become the norm. Once she had settled back to being at home and calmed down we had a bit of a chat and decided that what we needed to do was lay down some rules for getting her up and out with as little stress as possible in the morning from now on. We went through it step by step with her, inserted a bit of humour and as of yesterday we have a new routine which Sarah likes (but unfortunately requires getting up an hour earlier!) and things do seem to have returned to normal. There is some good come out of all this, not the snow, the being stuck indoors..
As far as reading and writing goes Sarah has never been interested, I don't think she saw a good reason for bothering and she does not like to be told how to do things, she tends to learn from watching and then having a go, which is a long slow process because she will not accept help. This is very frustrating but the way it is. We used to get messages back from school saying her reading was improving, but what was improving was the number of words she recognised, not her reading. But during our snow lengthened Christmas and New Year holiday Sarah has been occupying herself with matching the names of channels on her TV with the TV listings magazine and then writing them down in a notebook, she is making some connections she's never made before and I think she's quite pleased with herself. We don't interfere with what she is doing and she's not asking for help, we only found she was doing this by accident and haven't spoken to her about it. My guess is that she will come to us with the knowledge she has gained at some time, probably when we are least expecting it. She does bring Cd's and the like to us to tell her what some words say, song titles and names of course and alternative or just plain bad spelling, they are all being added to her lexicon. She is really putting a lot of time and effort into it and seems pretty pleased with herself about it. All this adds to her communication skills, she has started to use more appropriate words in conversation and we are left wondering if being snowbound for a couple of weeks every now and again might not be a bad thing after all...