Tuesday, 19 April 2011

Just Another Day

Just thought it might be interesting to write up a random day and what I do.

7am Wake up. When I say wake up it's actually the forth time of the night but time to get up.

8am Had breakfast and a shower. Jr still asleep so have a mooch through the newspapers online.

9am Jr still asleep so a cup of tea and decide to catch up on some paperwork.

10am Give Jr a knock as he has a drop-in group at 11am. He comes downstairs 10 minutes later asking what time we're leaving. He looks pretty zonked and I know he's having terrible trouble with his sleeping patterns right now. A few minutes later he's back and says he can't manage it today which is no surprise.

11am Jr asleep again. Need to nip down to the local shop for a couple of bits and pieces but decide to put it off a little to give him a chance to either wake up or be 'well asleep'.

Mid-day Friend has just phoned to invite me to dinner tonight but with Jr being a bit at sea sleep wise it's going to be impossible so I sadly decline. Luckily my friends are not only used to that, they're also understanding. That's important.

1pm Been to shop for bits and pieces and switch on telly for news. Jr still asleep.

2pm Had some lunch after news and now doing some washing. Jr still asleep.

3pm Bored. Can't be bothered to watch telly and not in the mood for reading. Decide it's time to sort summer/winter clothes out. Jr still asleep.

4pm Clothes sorted and Jr still asleep. Switch telly on – Noel Edmunds. Switch telly off. Spend some time looking at things I can't afford on ebay.

5pm Hear Jr stirring upstairs. Start on dinner, or for Jr breakfast.

6pm Dinner ready so call Jr and he comes down for it a few minutes later. Muffled thanks and he takes it back to his room.

7pm Plates just come down so doing washing up. At least he's eating ok this week.

8pm No doubt Jr is by now engrossed in an online game in his room. I'm bored again. Also wondering when he'll be going to sleep tonight.

9pm Watching DVD. Pause it to make cuppa and whilst I'm in the kitchen Jr comes down and asks if there's enough water in the kettle for him to have coffee. There is so he goes back upstairs and brings down his mug and coffee. We kind of chat for a minute but he's a bit tetchy so I go back to the front room and leave my tea to brew. A few minutes later he brings the made cuppa through to me which, as it turns out, is the highlight of my day. I thanks him, and he almost smiles.

10pm Feeling tired but can't go to bed yet so put some music on.

11pm Jr has just come down and isn't feeling too well. It's going to be a long night.

Mid-might I can still hear noises from Jr's room so I knock and ask if he's ok. He says he is.

1am Jr is pretty settled now and I go to bed. Don't sleep.

2am Still awake. On edge. Going to be one of those nights.

3am Looking at rubbish on youtube. Jr still awake.

4am Bump into Jr again in kitchen and he says going to sleep now. I go back to bed but still can't sleep.

5am Knackered. Awake. Gently knock Jr's door but no reply so he must be asleep now.

6am Sleeping fitfully. Maybe 20-30 minutes at a time before waking up with a start.

7am Knackered but wide awake. Another day. And people think this life is easy?


Wednesday, 6 April 2011

Good Week

They do happen – not that often but...

Firstly my son's benefits. 1 week short of a year his DLA is finally more or less sorted. The appeal has gone through and the care component has been rightly put back up to the top rate, although we will be appealing the mobility section as they have, with no reasoning, left that at the minimum rate. The care component is the more important of the two but after all the trouble they've caused for us I won't give up until we get every damned penny that he's entitled to. Before I gave up work to look after him I was pretty much always on a high tax rate and I also didn't claim (for myself) for the first few years as I had ample savings so whilst I don't think that entitles us to anything extra it bloody annoys me that after trying to do things the right way we've had to go through hell to get anything.

Also we found out about a pop-in centre in a local church hall for mental health service users. Last Thursday we went for the first time and frankly I wasn't hopeful that he would want to go again. It's virtually impossible to tell what he's thinking when we're out as his mutism and social phobias make him seem totally locked into himself, even though he is actually incredibly attentive to what's happening. He can communicate with me when we're out, but it's only really basic and through tiny, almost imperceptible hand movements. Anyway, we stayed about half an hour whilst I chatted with the woman that ran the group and then left as I didn't want to be there two long and for him to get stressed. When we got back to the car I asked him if I'd got anything I had said on his behalf wrong (a check we go through after every appointment as whilst I can answer most questions regarding him I do like to make sure that I haven't got anything wrong) and he said there wasn't. I then asked him what he thought of going again and was pleasantly shocked when he said he'd be willing to go again. Little things like this will be so important to him as every step to be able to cope with society face on is a massive step for him. Hopefully this could be a start (yet again).

So all in all a good week!