It’s been three weeks since my last post, and there have not been any real reasons why. I’ve just been a little bit lazy I suppose. I don’t like writing when there is a chance of being disturbed and with the problems we are experiencing with our youngest son, sitting and putting fingers to keyboard has not been the top of my to-do list. I think I’ve explained here before that Rh*s is Autistic and has several other linked conditions. One of the issues many Autistic people have is routine. Things have to be the same with little or no variation. Rh*s likes to know what he is doing, where and when he is doing it and who with. Changes, even the slightest can lead to anxiety and stress, which often manifests in his behaviour. He currently lives at his residential placement for 4 nights and 5 days a week. He is picked up from home Monday morning and returns Friday evening. It’s taken a long time to get to this stage, and he appears to be happy with the arrangement. He has his own flat and many staff to support him on a daily basis. However, it is now the time to plan his placement for the next year, and this is causing some issues.
I create a planner that shows the nights he sleeps at his flat and the nights he doesn’t. This planner is on his bedroom wall at home and one of his walls at his flat. The current planner ends on the 31st December this year. Since the middle of June, he has been ‘worrying’ that he is not going to his flat next year. Before he can see his dates we have to run it past the representative, of the people who funds his placement and this is where there has been a stumbling block. We believe, that as his placement is fully funded for 24/7 care, that the funders are going to insist on him going 24/7. We, as parents, and the support team do not think he is ready for this yet and we may have some arguments to overcome in the next couple of weeks. The uncertainty has come out in his behaviour, to the extent that he is not wanting to do some of the activities that we know he enjoys. He has also taken to ‘chanting’ about his dates. Every so often and at the moment it seems to be every hour or so he will recite “Friday, Saturday, Sunday” for every weekend up until the end of 2020. This is basically, we think is his way of asking “What am I doing next year?” We think he can actually picture his calendar in his head, rather than actually remembering the dates.
We were supposed to be meeting with the representative for a review of Friday, but the person had got some crossed wires and did not turn up. The meeting has now been rescheduled for early October, but this does not resolve the issue we have. What we and his care manager are now thinking, is that we just go ahead with the dates we are looking at, and if the funders are not happy with that, the issue will be taken to an advocate to speak for him in what they call “Best Interest”. From what I understand this advocate will look at what each party thinks is his best interest and make a decision. Could go either way, but I think that parents and carers know what is best for him more that someone sat at a desk with a financial spreadsheet in front of them. Gong to be a stressful couple of weeks.
I’ve heard a bit about Gutenberg, the new WordPress editor so I thought I would give it a go. “Be bold.” I said to myself, “Don’t get in a rut” and a few other motivational phrases that I don’t want to go into.
My first impression was that it had a quite confusing interface, and I found switching from what they call “Block” and “Document” to add a tag or category, very frustrating. I like to add tags as and when they appear in my text. Then there is the text formatting which seems to be missing ‘full justify’ which is how I usually format my words. Embedding an image within a paragraph does not seem to work. There may be a way to do it, but I could not see how. I didn’t seem to be able to post my words as a draft post. Although I selected ‘pending’ as an option the post went live (now deleted). All in all, unless WordPress are prepared to give us a full tutorial, then I’m going to sit in my rut like the cowardly lion and stick to what I know. It’s the same feeling I had when Windows Live Writer was withdrawn (before I found Open Live Writer) and I tried using Microsoft Word to write a post. I would possibly get used to it, but in the end, is it worth the stress of change?
I can quite see, that WordPress might want everyone to eventually use Gutenberg, but until then, I’ll stick to Open Live Writer.
It is just about a year since the last time K*** went away with her sister. She said then that it was a ‘one off trip’ and I thought at the time, that it could not be a one off because of the pre-holiday costs. You may remember (and I forgive you if you don’t) that I posted my feelings about it at the time. However, it all went very well, better than I thought and a lot better than I posted. R*** seemed to accept it without any issues, apart from asking every day where his mum was. Well the time has come around again. R*** went off on respite until Friday and K*** set off to her sisters soon after. So I’m “home alone” so to speak. Again, I have a list of jobs I want/need/have to do before R*** gets back and a couple more before K*** returns. For now, I’m just calming down a little. I have been a little stressed about it during the build-up, but I think I’m okay.
Got to go out later. We’ve bought a storage cupboard for the garden. We usually keep compost and the like in the garage, but it is a bit of a bind when you’re working in the back garden and have to keep going to and fro to get stuff out of the garage. So K*** has bought one of those Keter storage boxes. I’m just hoping that I can get it in my car. It is quite a big thing and I’m a little concerned that it won’t fit in the boot, even with the seats down. We shall see, but I’m not sure of the options if it doesn’t fit.
After the problem, I had buying that drill from eBay, I ended up getting one from Aldi. I have had some of their tools before and they seem to be quite good. It’s being delivered today and when I last looked at the tracking site, there were two deliveries before mine, so anytime now I suppose. In fact, it’s just been delivered.
The holiday came to an end on Friday. Was it a success? In many ways it was. The celebration lunch on Thursday was great and everyone enjoyed the meal and general get together. However, it did have an effect on me that I will come to later. Some of the family went home Thursday, which left room for S**** and A**** to stay over for one night, which was nice. They were off early Friday morning as they were having a day in York. K*** and me and C**** and J*** (‘the in-laws’) visited a nearby garden that was open to the public and had a pleasant time.
At around half past two, we went our separate ways. K*** and me needed to get some shopping from the supermarket. We did that and then went on to Tadcaster and that cycle shop/bar/café that I may have mentioned before, for a drink before home.
R*** was home a little earlier than expected and there had been ‘issues’ in the taxi. He had been picked up a little early and the driver had had a problem with her ‘sat-nav’ which resulted in them taking a route different to his usual routes. This caused all sorts of problems and both the driver and the escort suffered for it. I’ll not go into too many details, but many will know that people that are Autistic do not cope well with change. I shall leave it at that. K*** is taking him and bringing him home on Monday, and we will await what the transport company make of it.
Now to the ‘effect’ I referred to earlier in this post. The pub we went to was (as I’ve been told) the same pub we went to for my birthday back in April this year. I had no recollection of the place! Granted, we were in a different room, different time of day and we approached the place from a different direction, but I could not remember any of it. Apparently we had our order taken by the same waitress that took the order on my birthday. Nothing! I got the usual “Don’t you remember blah blah” and “You must remember blah blah blah.” But I didn’t. Even when someone said “You’ve ordered the same as last time … remember?” I had to say that I did not.
At first, my memory issues were put down to my operation and what is commonly known as ‘Pump-head’ but this usually clears up after a few months, and it’s been over two years since the op’ so it seems an unlikely cause. So what is left? One immediately thinks of Alzheimer’s and the worry starts to creep in. It is certainly something to mention at a future meeting with my doctor, and at times it can be extremely stressful and worrying.
Back to work tomorrow and it’s getting close to the close down of the project that I’ve been working on for that past eighteen months. After this it will be back to being a ‘senior application support officer’ and all that that entails. Not something I am looking forward to.
I hope to hear something regarding my Voluntary Early Retirement (VER) application this week. It goes to the Corporate Panel on Thursday and as I understand, it is merely a rubber stamp procedure. I intend to chase up my Head of Service first thing on Friday morning for an answer and then the real planning can start.
A stressful evening and a bad night. Don’t know what was going on, but at about half past 2, the bl**dy dog wandered into our bedroom. I’m thinking it might have been poorly, and K*** had left the door open with the idea that it might be cooler. That was never going to work. What with that and the “nasal trumpets” sounding most of the time, it led to about total is about 3 hours sleep.
Let’s see what today brings.
Update: no news on our ‘Curious Incident … etc’ dog seems fine, and I’m the only one that appears to be the worse for wear … is it me?
That is what I was going to talk about. The ‘interesting’ weekend! But, after writing the first couple of lines, I decided that the weekend was not about me, and that it was not fair to write about it. So you may not get to get to know … yet.
Instead, it’s going to be an interesting week. Well that maybe pushing it a little. I have another INR test tomorrow, only a week after the last one. I cannot believe I had got up to six weeks between tests. I still think that stress plays a part, but maybe I’m just kidding myself and it is really too much alcohol. I was going to have an alcohol-free evening, but it has been a poor day at work and that and the small issue with R***’s computer, meant that a glass of wine was required.
It was the slightest thing with his computer. We had somehow switched off the power to the 4 way adapter and his laptop was running on battery power. Unfortunately, the battery had got to 2% power, before it became clear what was happening, so he got a little stressed when his machine told him about his battery needing charging. It took a good 30 minutes before the pop-ups stopped, but things like that seem to linger in his autistic mind and worries him. Still, he seems to be calmed now, so we may have got away with it this time.
Then, the ‘interest’ continues when I have my hospital appointment on Friday. I am supposed to be at a ‘team away day’ on the other side of Leeds and I was going to take the afternoon of as ‘flexi-time’. But I’m not happy with having to increase my journey time by an extra 30 minutes, just to satisfy someone’s managerial ego. My current line manager, totally agrees (but only because she doesn’t want to go) that I would be greatly inconvenienced by this. I may have to take the decision not to go and possibly invent some excuse why it would be not a good idea.
I was sat at work, chatting to one of the IT partners when I got a text message. By the time I had finished talking, I had almost forgotten the text. It was from the doctors confirming my next INR test date. Strangely, they had simply sent a previous message which was stating that I was booked in for a test on the 9th February.
I rang the wife and asked her if she had booked me an appointment and I explained that the date was wrong. She told me that the anticoagulation clinic had left a message and that I needed a test on the 8th March.
The shock was that my INR, which should be in the range of 2 to 3.5 with a target of 2.5 was actually 4. This is the highest it has ever been and was strange because my last test was back to around 2.6.
Now I’m putting this down to a combination of stress and the fact that I had drunk a bit more alcohol (although not much more) than usual. The doctor has said that he has not heard of any research into stress and INR levels, but it was quite feasible given what stress can do. However, I think it may have more to do with the alcohol!
Here’s a question for you. The clinic should have rung me on my mobile as that is my primary number, and the phone did ring at around 10:30. However, there was no number and the display simply said ‘Private Number’ which means nothing really. I tend to ignore calls like that, on the grounds that if it is important, then they will leave a message. I don’t like the fact that callers can hide their number and given that I already have 2 numbers for the clinic, I would have thought they would have used one of them.
I’m wondering how many of you answer calls from people that hide their number?