It’s been a while …


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 Planner examplehome 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.

Nearly over …


I refer, of course to the “Home alone … yet again …” experience in my last post. Well the week has sometimes flown by and then at other times it seems to have dragged a bit. I suppose the hardest part about the week was notAlone having anyone to talk to. S**** and partner came round on Thursday, but they only stopped for a meal before going for their Thursday swim. I went to the quiz-night at the local pub on Tuesday, but it’s been that long since I last went, there was nobody in that I knew. Seems that the pub in the next village that used to do a quiz-night has closed, so all their regular ‘quizzers’ descended on my local. I didn’t stop.

R*** has been marvellous! An absolute star. It looks like the fact that we told him K*** was going on holiday with his grandad Starworked. He was home by 5pm on Friday, and it took him until 10pm on Saturday before he asked where his mum was. I told him again and he hasn’t mentioned it again. I was quite amazed really, as it was K***s biggest worry. It goes to prove a point we have been making for a while. That is, if he knows what he is doing then he seems to accept it. Autistic people like routine and can get distressed if their routine is changed. With R***, it seems that his routine is able to change as long as he knows about well in advance.

Break over …


Well we all managed to get through the week without any major upsets. Some of the family were going home one way and the others were going a different way. K***, S**** and me decided that we would just go straight home. We called in Aldi and were going to have lunch at Ask Italian, in Wetherby. However S**** had found out that his house having a viewing and he just wanted to get back. So we left it at that.

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R*** was home a bit later than usual, and he didn’t look too happy. He was droning a lot and then started shouting and banging the furniture. He was also getting quite violent. We gave him some of his medication that calms him a little,but it took quite a while to work. Eventually he did calm down. We have no idea what caused the melt-down, but I think it may have been some issue with some YouTube videos that he was looking for. Often when new ones that he likes are added, some of the older ones drop off the suggested list. He slept all night without a problem, and whatever it was was no longer an issue. It has been a long time since he was like that. We have had the occasional angry outburst every few days or so, but have not needed his medication for months.

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I think there has been an update the the web version of Outlook.com and I’m not sure if I like it. formatting the afore mentioned break, there was a button in the Spam folder, that allowed you to block an email address. This button is no longer there. I liked it, because you could select three spam mails, hit the Block button and Outlook.com would display the senders address. That way you could make sure that the emails were really spam before you blocked\deleted them. Now the only viable option is to delete. I feel that Microsoft is taking away more of my control and I’m not sure I like that.

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I’m still learning how to use this BlogPad Pro app. Each time I use it I find new things about the software. For example, I prefer to have my posts full justified and using Open Live Writer, that kind of formatting is easy. This was a tad more difficult to find the formatting button, but I got there in the end. Think it may be a long haul to fully master it.

 

An interesting weekend …


In fact, a very interesting weekend. So interesting for us, that I feel it is worth posting about. As I mentioned earlier, K*** has had a problem with her eyes and this has led to her spending much of the weekend trying to rest. She threw a sickie today as she didn’t think she would be able to cope at work, and it was probably a good idea. She is still in pain and and is still seeing the ‘floaters’ at the side of her head. She is going to ring the hospital tomorrow to find out if this is normal. She tells me that it seems to be improving, but only slightly and we don’t appear to have a time frame for improvement.

Now comes the interesting bit! R*** has been a real help. We rarely get a weekend where we do not have an issue with him. The usual issues range from a shouting episode to a full blooded melt-down and we always have a least one issue each day. But not this weekend. There has been nothing. He has been laughing, smiling, singing and generally having a good time. Of course there has been the odd time when he has been a little ‘grabby’ and squeezed my arm, but that has been when I’ve done, or attempted to do, something he did not want to do. And, the squeezing has been a kind of warning squeeze rather than the usual forceful type.

We have come to the conclusion, that he is somehow aware that his mum is not well and this has had some kind of ‘compliance’ effect on him. It maybe that he is just in a good mood, and that nothing has upset him this weekend, but it does seem very unusual, albeit in a good way.

He is on respite tomorrow and will be back on Friday and we will have to see how that goes. It is usually ‘okayish’ and there doesn’t seem to be too many issues, but it will be interesting to see if this current mood continues.

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That’s all for now. Just a little update that I had to share.

Labels … and other things


To be more precise … clothing labels. Wash-care labels, sizing labels and any other label that is on the inside of the clothes. Why do they always seem to have sharp edges and corners? It maybe the type of clothes I buy, cost , make, whatever, but I always have to remove the label before I wear them. If I don’t, then they scratch and boy does that scratch irritate. I think this the reason my youngest son R***, who is Autistic, cuts out the label from every item of clothing he has. The difference between us is where I cut out the label with a few (not so mild) expletives and hurl them in the general direction of the waste bin, he carefully stores each one in a mug on his computer desk. Last count he had over two hundred. We dare not throw them out.

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Now, talking about R***, his room at home has, and I may have mentioned this previously, a laptop, a TV (now new) a Sky box, a DVD player, a CD/Cassette player, and until yesterday morning a faulty VHS video player. It’s been faulty for about six to eight months, maybe more and had an old VHS tape stuck inside. He tend to want to use it when the Sky connection fails. But it does not work. We had in the other bedroom a further five players that had been given to us when his previous player broke back in November 2014. A friend heard about his breaking and kindly let us have all the ones she had. There were no guarantees with them, but one of them did actually work. The issue with that was no handset. Without the handset, there was no tracking and without tracking, the tapes were unwatchable.

The failure of his TV and his weeks respite gave us a great opportunity to remove the VHS player and hope that he either did not realise it or did not care about it. They are now stored, for the foreseeable future in the garage. As with the labels, we dare not throw them out!

… and then it was over …


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.

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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.

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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.

It had to improve …


It started when I got home Friday afternoon. I left early as K*** was taking her mother to an appointment and I needed to be home in time for R*** coming home. He’d been on respite since Tuesday and has been getting home the previous week at about16:40. So I needed to ensure that I was home in good time to allow for problems on the motorway.

The guy who had done our rendering was supposed to have been to clear up, but he can’t have done much because it was hardly noticeable. What I did see though was that he had dumped some of the rubble he had cleared in the garden waste bin. Working for the Councils Waste Management, I know that he should not have done that and that we could have our garden waste collection stopped. I managed to get most of it out and into an old compost bag which I can get rid of later.

So back to being home early for R***. What a waste of time! It was 17:40 when the taxi finally dropped him off with the drivers excuse that there had been a ‘serious accident at the roundabout.’ Now this was a blatant lie. When I got home, I checked the travel details on the BBC website, which showed that traffic on the motorway was running fine with no delays in our area. I continued to check as it can give an indication of the time that R*** would arrive home. There were no issues at all. It was a lie. K*** is going to check what time he was picked up, and she will take it from there.

The thing with R*** is that when his routine is compromised, the effect comes out in his behaviour. It’s one part of his Autistic condition that we always try to prepare for. Doesn’t always work though. He started to get a bit tetchy at around 21:00, shouting and playing his computer at full volume. We gave him some medication to settle him, which seemed to work. He became more his usual self. Went off to bed at the usual time and it was all as it should be.

Then disaster! At about 01:00 we heard him shouting, not too loudly, but loud enough to realise he was not dreaming. K*** went to see him and called me to look at his computer. Now I think I have mentioned this before, but R*** sleeps with both his TV and computer on. His TV is on a specific channel and his computer has some YouTube videos on a loop. Both are very quiet, but he always has them on. What happened was that his computer was not working. It was completely dead with no power at all. I checked all the other power connections and they were working okay. So I changed the fuse in the plug for the computer and tried again. Nothing! Then without warning, his computer kicked back into life. All happy again. I could only surmise that the computer battery had completely discharged. It was either the fuse or more likely that the power cable had come loose from the machine.

By this time though R*** had gone into partial melt-down and K*** had given him some of his PRN medication. This really calms him down, but sometimes effects his sleep pattern. It was about 04:00 that he finally settled to sleep. A long night for all of us.

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Now after ‘The Curious Incident of Laptop in the Night’ to paraphrase, I began to worry about what would happen if his computer had not restarted and was broken. He does have another laptop that he takes when goes on respite, but that is for there. He just would not accept that he could use it at home. I began to think that my ‘old’ laptop could be upgraded to Windows 10. I bought a new one when Microsoft started to push Win 10 and reduced the mainstream support for Win 7. I did not want to upgrade my machine as there was some core software that I use, that was reported not to work in Win 10.

So, I bit the bullet and decided to upgrade the old machine to Win 10 and use it as an emergency machine. I knew it as going to take a couple of hours, but what I was not prepared for was the actual time it would take. It was 10:30 when I clicked the ‘Upgrade’ button and I sat for the next hour watching what was happening. I had been told that there was very user input, and that was correct. It finally finished installing leaving me with a workable system, just under eight and a half hours later!

I am now in the process of un-installing all the software that nobody would actually use. Could be another long day.

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A quick update on my early retirement bid. On the 7th, I emailed the pension company asking for a copy of my 2015/16 pension statement. The reply I got back was short and sweet telling me that the ‘… statements were being sent out everyday, in alphabetical order and I should hear in a couple of months …’ I was going to wait until Saturday and write a more detailed email to point out why I needed the statement now. So it came as a bit of a surprise when the post came on Saturday morning to find my 2015/16 pension statement had been sent. Date of printing … 7th June. Coincidence?