Saturday, 25 January 2014

Another day, another worry

Its 1 am here, and I am wide awake. Full of cold and so bunged up its unreal. So when I cant sleep, I do something else. Like think of whats going on in my life. Anxiously waiting for replies to various emails and letters. Planning what I need to be saying to people. Wondering if I am alone in my views. So I turn to the wonders of facebook to ask around. Then I am waiting for replies, to see what others have to say.
We had a good boxing day. We saved a main present each for the children to give to them. They didn't need more on Christmas day, and as they didn't complain of being bored, and were happily joining in family games and fun, so we left a main present each until this afternoon. They were over the moon with their presents. And, we spent a whole evening at friends, with both of them playing well and no complaints of 'I'm bored'.
Two little words that can cause so much damage. You see, daughter cant cope with being bored, or cant entertain herself as son can. She doesn't have the mental ability. So when she is bored, she needs stimulation. If we cant sort something out, she starts being difficult, immature, repeatedly singing silly songs, louder and louder, or just repeating 'I'm bored' again and again until she has driven everybody mad.
Any families of children with PDA (Pathological Demand Avoidance) type autism will totally relate to what I am saying. Its hard to go out to pubs, restaurants and often hard to visit friends. Because when 'I'm bored' kicks in, its best to make excuses and leave.
We have friends visiting tomorrow evening. They are a lovely family and we always have a lovely time, but their son and our daughter can clash. When they get on, they get on very well, but you never quite know which way its going to go until we get together. Makes for an interesting evening.
The petition to get PDA recognised is slowing down on signatures. If you have not done so, please sign and share the link. Its so important families get a diagnosis and support.
We have been amazingly lucky these last few days, despite the stress of Christmas and changes to routine, daughter has coped well, and has not had any major meltdowns. She has had a few incidents where a meltdown was looming, but we have managed to defuse. As we are becoming more aware of what causes her anxieties, we are more able to manage them for her. She is clearly not able to manage them herself. Our last big meltdown was Sunday. On a normal school week, we would have had many more by now. The demands the children have placed upon them at school cause daughter to come home a total stress ball. I am pleased she is well behaved at school though, I know of many PDA children who can not cope and misbehave at school which puts even more pressure on the parents. Especially when they cannot get a diagnosis. Having said that, there are times in previous years where I have wished she would explode at school. Just so I could say 'I told you so'. Until recently, the school really didn't understand the issues. I was always told 'she is fine at school'. (I didn't know about PDA then otherwise I would have fought harder). This last term, she really hasn't coped with the pressure. Its meant most mornings, the teacher, or senco or receptionist (or sometimes, all 3) have had to come and take her off me to get her into school. On some occasions she has been violent towards me, because she doesn't want to go. So far she has managed to avoid hitting anyone from the school and clams down as soon as I have gone. She has tried sitting down and refusing to move for them. But she soon gets bored and co-operates! She tells me she doesn't like her teacher and that's why she is so bad. If I am totally honest, I think she is just not coping. Her immaturity is showing through and she is beginning to find the work difficult. I think the teacher gets the blame and which ever class she is in would not change a thing.
We went to friends for boxing day night. We left at 9. Despite the nexus tablet, daughter started getting bored and tired. That 'B' word again....She was becoming anxious. Time to head home before it gets out of hand.
This is the second night the kids have been on blow up beds in our room. First was Christmas night as we had guests spending the night in daughters room.  Second was because we got home late and its the quickest way to settle them. Tonight its going to be back to normal, which will probably be back to meltdowns. Daughter doesn't like her own room. When it suits her.
Its now 3 am. I think I will post this tomorrow. When I have checked it to make sure it makes some form of sense! Bed time now. Night everyone.

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