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 certainly hope so, and here’s the story.
Yesterday, our youngest son was admitted to St James’s Hospital in Leeds. It was a planned procedure called Cross-Linking. Basically it involved ‘scraping’ a layer of the cornea of both eyes to reshape it. It is not a pleasant procedure when you hear it, but it apparently the least invasive. However, because of R***’s autism, he needed full sedation and all the risks that come with that.
All the time before, and after the procedure we kept reassuring him, by telling him that he was a star. We didn’t have to wait too long for his theatre slot which was a blessing, as he doesn’t cope well with waiting. He is still getting over the anesthetic and it is difficult trying to stop him from rubbing his eye, which could lead to infection.
So now the coincidence! Today, at Wetherby racecourse is a horse running called “St James Star”. It is running in the first race at 14:10, which is about the time that R*** went into theatre. As Wetherby is our local racecourse, I got to thinking it is worth have a small wager.
I shall update after the race. Fingers crossed.
** Update – the horse came second **
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 not 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 worked. 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.
Bit of a sh*t start to 2019. My wife’s mother died of pneumonia in hospital last night. She had been poorly for a while and went into hospital on Boxing Day. It had been fully expected to happen for a few days, but you are never prepared for the emotions that hit you when it finally does.
I just telephoned my mother to break the news and it was really hard, especially as she is not well either. In fact they were both in the same hospital at the same time, just on different floors of the same wing.
That’s all I can say really.
On a better note, the eldest son and his partner are having a baby. It will be June sometime when it’s due, and its a weird thought. I’m going to be a grand-dad. We never thought it would happen as his previous, just wasn’t interested and it would never be possible with our youngest. With people with his level of Autism, it just isn’t a thing that happens. So I’m going to be “Grumpy Gramps”, which I kind of like.
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.
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.
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.
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.
So it’s 10 minutes to midnight and you may be wondering why I’m posting about an ‘uneventful day’? To be honest, I have no idea why! I’m struggling to find something new to moan/rant about and it feels a little weird. Of course, it being now 5 minutes to midnight, I may possibly be a little over my usual drinks limit (limit!! That’s a laugh) but I feel quite lucid and sensible. So what’s happened since my last post?
Well very little really. Eldest son has started the process of re-communicating with his ex-partner and it seems to be on a quite civilised level. It seems to me that there are four levels to a relationship break-up:
- the disbelief
- the anger
- the bitterness (aka bitching) and then
I think they have just got to level four. They have a lot to discuss and I think if they do not get too much outside interference, then it should go relatively smoothly . Fingers and other appendages crossed!
I think I’m going through a ‘snoring’ period. Well I hope it is! Mrs Me has for the past few nights been waking up and going to the spare (Sh**es bedroom) room to sleep. It often happens, when R**s is at home that one of us ends up in the spare room as he sometimes likes to sleep in our bed. We have got used to and have accepted it as being part of his Autism, but it is a bit of a ball-ache some times. However, for the past week, whilst he has been away, K**h has ended up in the spare room. She seems to go there at around 1:00 am and her reason is usually that she is feeling too hot (the spare room is a lot cooler). I have an idea that the real reason is that I’m snoring! I have to admit, that on occasions, I have woken myself up with a snore. So that’s the reason I’m sticking to.
Time to try and sleep now.
Have you noticed, that this the second post that does not have any ranting! I think I’m on a roll here
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.