Autism

Not been in the mood . . .

/ Tony / 1 Comment

I’ve had a cold since around the 16th of the month. I started with a bit of a sniffle on the previous Wednesday and I did a few Lateral Flow Tests (LFT’s) on the basis that the new Omicron variation had cold-like symptoms. All showed negative thankfully, but by the afternoon of the 17th (Monday), my cold was in full flow. So bad that I decided to ring in sick on Tuesday, which was probably the best idea. I spent the whole day in bed, sleeping which was very unusual for me.

By Saturday, I was beginning to feel much better and was almost looking forward to returning to work on the following Monday. I duly went back, but by Tuesday afternoon, I was beginning to feel bad again. More LFT’s followed, but again all were negative and I had to give in to the fact that either my initial cold had not gone, or that I had a new version. It’s just coming to the end now, ready for work tomorrow. Oh, joy!

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Wednesday is not going to be a good day. The trust that funds R***’s placement has decided that they don’t it to be fully funded by them. It has been for the past 10 years, but they now think that the funding should be shared between them and the Local Authority. I find it very wrong, that people make decisions about people, without even really knowing them. But apart from him getting older and becoming more tolerant, he still has the same diagnosis. He has not been ‘cured’ of Autism or ADHD. His medication has been reduced, but that is down to the team he works with.

So on Wednesday, we are having a Zoom meeting with the Social Worker that has been allocated to him. It’s going to be very stressful, especially as he’s been in lock-down since he went back to his residential place at the end of December. Hopefully, he can get home for the weekend, but much depends on how the virus spreads over this next week.

Fingers crossed . . .

/ Tony / 2 Comments

© Nottingham Post

Well the youngest went off this morning. His lead care worker and another care worker picked him around half past ten. We hadn’t told him where he was going, only that his flat wasn’t finished (he knew it was being decorated) and he was going on an ‘adventure’. K*** told him last night, and we were on tenterhooks regarding his reaction. This was another change to the plan. People on the Autistic Spectrum often don’t react favourably to changes to a routine. But it surprised us both. He just looked up from his laptop with a bit of a confused look, smiled and carried on searching You Tube for his favourite videos. I went up later and asked if he was excited about his ‘adventure’ and he said he was. We now just have to wait and see how the two carers go with it. I’m not sure if it is his medication or the care staff, or a combination of both that means things can change without too much upset. A year ago, any slight change would often result in an autistic meltdown, but these days, he just appears to accept things better.

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New phone arrived today. It’s the same make, just a later model. The price on eBay was £142.99, but for some bizarre reason there was a discount of £28.60 on the deal, but I had to buy that day. It was the phone I wanted, so I went for it. I was just about to go through my Cashback site for another 1% off when K*** explained that if I went through her Cashback site, I could get another 10% off. After a bit of ‘umming and ‘arring I bit the bullet and bought the phone. It now looks as if the phone will cost me £102.99. Not a bad saving!

Beyond belief …

/ Tony / 1 Comment

Sometimes, things happen that are quite honestly “Beyond Belief.” Our youngest son sometimes proves that. R… is 28 and Autistic. We are gradually phasing him in to full time residential. At present he goes on Monday morning and returns 11 days later for a weekend visit. He gives us the impression that he really enjoys  his life there.

ppeHe has a regular care-team, his own flat and his own motorbility car. During the ‘lock-down’ he went on the 23rd March and did not return until 10th July. Then again he went on the 19th October and was not allowed home, under the rules until 11th December.

All this, he seemed to take in his stride. In fact, we were more stressed and traumatised than he seemed to be. His care team kept us well informed  and rang everyday to let us know what he had been up to and with a weekly FaceTime we just about got through it.

White-one.jpgNow the interesting thing is that his daily life there is different to here. He does things there that we could never even dream he would do. When he is here, his daily routine is to sit in his room, with his laptop and TV. He will come downstairs for his lunch, then goes back to his room and that is it. Occasionally he will come back downstairs and use my laptop for a while.

Whilst in his flat, and this is the thing that amazes us, he takes on household jobs. We have photos of him mopping his kitchen floor, cooking his dinner (usually beans or sausage rolls) loading the washing machine and various other tasks around the place.

He was able to come here for Christmas, although there were times when it looked impossible, but his care-manager and all the teams put enough precautions in place for it to happen, so on Christmas Eve he came home. He would have had to come here anyway as he has a hospital appointment on Tuesday at which his legal guardian (horrible phrase) has to be present.

Now, on Christmas morning, we witnessed first hand something Lichfield Cathedralthat completely amazed us both. In fact, I still cannot get my head around it. My wife and me were downstairs getting things ready, as you do when I that he hadn’t had his morning drink of milk. I took his cup upstairs.

There was some typical Christmas church music playing and I assumed that my wife had not turned the radio off. How wrong I was. Normally, he would have one of the children’s channels on his TV , and he would also have a children’s YouTube video playing on his laptop.

CanterburyNot today. The TV was turned down and he had on his laptop a video of a Christmas church service. This played for an hour and a half before he started another similar video. I later found out that the first one was the Christmas Eve service from Lichfield Cathedral from 2000 and the second one was the previous nights service from Canterbury Cathedral.

By lunchtime he was back to watching old episodes of The Telly Tubbies as if nothing had happened. He did used to go to the local church to see the Christmas service when he was a school, but how he made the decision to watch that kind of video at that particular times, amazed us both

Difficult day tomorrow …

/ Tony / 1 Comment

The youngest goes back to his residential place tomorrow. He has been home for the weekend which he does every fortnight. He knows he is going and we think (you never can tell) that he is looking forward to it. He sits at his computer desk with his legs crossed and waits for his transport to arrive. Then it’s a quick flick through a couple of YouTube videos and he comes downstairs to go.

He has a diary/calendar that shows when he goes away and the day he returns, as one of his Autism traits is that he needs to know what is happening. If he knows, then he seems to accept things better. It’s basically an Excel spreadsheet with different coloured cells for different events.

Tomorrow is different. Tomorrow he goes, and because of the restrictions, he will not be coming home until mid-December. This is different from the last time, during lock-down. Last time we didn’t know it would happen and there was no other option. This time, we do know and we could have had the option of him staying here with us. It may sound harsh, but he is better off in an environment that we know he enjoys, with staff that enjoy looking after him. When he is home, all he wants to do is be in his room. He will not go out unless it is on his planner, so it becomes very frustrating all round. He had to go for his flu-jab yesterday, and it took us nearly an hour to get him to go. Thankfully, the nurses at the surgery know him and were aware that he might be a little late. But they got there on time and all was well. The staff at the surgery are quite amazed that he just lets them do the injection, although he is like me (another story), he has to watch the needle going in so it doesn’t make him jump.

He does not know that he will not be coming home in ‘11 sleeps‘ as his staff will explain on Tuesday. He accepted it then, and it was felt that he may not want to go back if we told him. Very difficult decision.

It’s been a while …

/ Tony / 1 Comment

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.

Are coincidences real . . .

/ Tony / 2 Comments

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 **

Nearly over …

/ Tony / Leave a comment

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.

Can only get better … can’t it?

/ Tony / Leave a comment

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.

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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.

Break over …

/ Tony / Leave a comment

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.

 

Been an uneventful day …

/ Tony / Leave a comment

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:

  1. the disbelief
  2. the anger
  3. the bitterness (aka bitching) and then
  4. sensibility

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!

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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.

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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

… and then it was over …

/ Tony / Leave a comment

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 …

/ Tony / 2 Comments

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?

A Long couple of weeks …

/ Tony / Leave a comment

Just over two weeks ago, my father-in-law went into hospital for a hip operation. He is in his early eighties and he had been going through a lot of pain prior to going in. He was also very very apprehensive about the aftercare for both him and his wife.  His wife is really quite frail and forgetful these days, so the whole thing had been quite traumatic for him.

Between them K***, my wife and her sister have taken to sleeping at their parents house so that they can help them and gradually ease them back into some kind of normality. The big worry for me and K*** was how our youngest son R***, would cope with his mum not being at home every evening. R*** is Autistic and does not cope with changes to his routine. Amazingly, he has coped really well. He seems to have accepted that mum is sleeping at grandads house and that she would be home the next day.

As an extra trial, we have had the rendering on our house replaced. This entailed drilling all the IMAG0446old rendering off and putting new on. So for just over three weeks (it went last Saturday) we had scaffolding all around the house. One consequence of this was that we lost our satellite connection for the television. I may have mentioned before that one of the things R*** likes is to have his television on all night. It is on with the sound very low, but it is on all the same. We were expecting serious problems. However, he simply played two of his DVD’s over and over again.

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Still no news on the job application. I’m beginning to think I may have missed out, but then again, they simply may not have filled the interview quota. I’ll have to look out to see if it gets re-advertised. The project I’m currently on shuts down at the end of May, and it looks like I may be moved back to the main team. Something I’m not looking forward to for reasons I won’t go into here.

The job I applied for seems to be along the lines of the work I’ve been doing for the past 18 months, but in a more formal and structured way. Although I don’t have all the IT knowledge they ask for, I think it is something I could pick-up reasonably quickly.

The fingers are most definitely still crossed.

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I have always been a knitter. It is something I learned how to do when I was very young. During the early years, I tended to make baby clothes (my parents were pre-adoption foster carers at the time) so I became quite skilful in knitting complicated lace-like patterns.

Now, I have begun to take an interest in crafting as a whole. It was really sparked when we were visiting a small craft exhibition, and I saw a handmade Valentines card. It was simply a piece of card folded in half with a variety of small coloured buttons stuck oMy versionn the front in the shape of a heart. Price was £1.99 for a single card and envelope. A quick trip to our local £1 shop and I had a pack of blank cards and envelopes and a pack of small coloured buttons. Price? £2.00 for enough to make ten cards. I was almost hooked. The thing that finally convinced me that I could do this crafting as a hobby was when I saw how to make a small bow using a four pronged dining fork.

Since then, I’ve been collecting a variety of bits and pieces that I think will be able to make some ‘craft type’ thing with. It has now got to the point where I have subscribed to a crafting magazine that comes with a small beginners sewing machine as a free gift. There is no stopping me now!

Worrying day, going well …

/ Tony / Leave a comment

I was going to have a go at with the new Writing Prompt app today (might still do later) but things that we were expecting to go bad, didn’t. I shall elaborate.

Mrs H*** decide, some time ago, that she wanted the rendering on the outside walls replacing. It has become damaged somewhat, and the last paint job did not work well at all. The issue has DSCF0167been that the paint is flaking off and exposing the ‘bare’ render. It is not a small job and requires that the old render be chipped off and a new render applied. My personal view was P1010864that it just needed the rest of the paint removing and the render skimming. As ‘Master of The House’ I was, of course out voted and we went for the a full re-application. Whatever we had decided on, it meant that the house needed scaffolding erecting. Today was the day that the scaffolders arrived. We were both worried that the noise would upset R***, as because of his Autism, anything out of the ordinary can cause him a problem. He was brilliant, and it did not seem to worry him in the least. He skipped from room to room looking out of every window, just watching everything that was going on.

Then, just we thought that we had cracked it came the the ‘big hit’. One of the guys knocked on the door and explained, that because of the position of our satellite dish and the positioning of the scaffold around it, we would lose the signal. Now whilst (whilst or while … which would you use?) this was a bit inconvenient, me and Mrs H were not too bothered. But R***! He watches (at least it is on all the time) the same programmes every day. From around 8am until 10:30pm it’s ‘Nick Jnr Too’. He then switches to ‘BBC2 NI’ until 8am the next day. This happens all the time he is at home with us. Never changes. So how will he cope with this? He seemed to be okay when he was having his lunch and when he finished, I managed to load up Thomas the Tank Engine DVD. Surprisingly enough, he accepted this without any issue. We were both amazed. He is now on his 4th DVD and has even picked his own choice. This certainly not what we were expecting at all. There is a lot of finger crossing and hoping at the moment, as he could just turn at any time. We will know when  it gets to BBC2 NI time!

Been another long day …

/ Tony / Leave a comment

INR blood test day today. Now that the footbridge over the Wharfe in Tadcaster has been installed,Damaged bridge going for the test has got a whole lot easier. Instead of a  20 miles detour, it’s now more or less back to the usual 8 mile trip. The old road bridge was severely damaged in the floods in December. So badly damaged that it partially collapsed and has had to be closed . For the past two months or so, the town of Tadcaster has been virtually split in two. It has had a lot of television coverage, footbridgebut it is only when you see the damage and what it has done to the town that you really appreciate the new footbridge and the near normality it has brought back. So back to the blood test. It was my favourite phlebotomist that was in today, so it was a quick ‘in & out’ and the job was done. Well almost a quick in and out. The usual vein proved to be rather obstinate and it took a couple of attempts before she got a flow. But I was still in and out, before half past 8 and was on my way to work in good time.

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Work proved a little stressful. It was ‘go-live’ day for part of the project I’m working on. It should have gone without a problem, but as is normal for this project, it all went wrong. We had to get the engineer for the software house out, who after a few tests decided that a part of the equipment was faulty. So that was the end of that. The part has been ordered and we will start again on Thursday of Friday. I’m hoping for Friday, as that would mean having to miss the team meeting (sad face, tears, depression etc etc.) Hopefully, that will fix the issue and I will be the hero of the day!

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Serious Autistic melt-down from R*** tonight. We had been concerned since he got in that all was not well with him. He was ‘droning’ which is basically him walking around with his fingers in his ears humming loudly. It sometime is indicative of him having a headache, but this has never been proven. We gave him the usual 20mils of liquid paracetamol, but we knew that it was probably not going to work. Ninety minutes later it went downhill really quickly. He completely lost all control. K*** managed to give him his ‘come-down’ medication, and eventually he started to settle. We are now two hours on, and he is still a little distressed, but at least the violence has stopped.  

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This was supposed to be the start of my ‘short and often’ posts, but it still has gone over 450 words. Maybe 450 words is becoming my norm, or maybe I had a lot to say today …

Difficult evening – more to follow I think !

/ Tony / 2 Comments

R*** has been on respite for the past two nights. It’s usually a bit tense when he returns, but for the past six or seven occasions, everything has been fine, with no issues to speak of.

However, tonight has been different. Tonight was the night when he decided that he wanted to watch a VHS video (anyone remember VHS?). He has many many VHS tapes, both pre-recorded and self-recorded ones. You may remember me blogging about having to buy a refurbished VHS player on-line last year. Well tonight, for the first time in over six months, he decided he wanted to watch a video. Now I do not know what has happened, but it seems that the tape is now stuck in the machine and will neither play nor eject. This has of course caused him, because of his Autism to become very distressed. There is no way he can understand that the video has a problem. He just wants it fixed. Fixed now! I will of course give it a try to fix it, but I don’t hold out much hope.

* * * Update * * *

Immediate danger has passed. At some point, between writing this post and 09:30 today, the little devil has somehow managed to release the jammed tape and the VHS player is now working again. All is good, but I have no idea what he’s done with the tape!!

The Times they are changing .. of sorts

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It has reached that time, when my phone contract is just about to expire. For the past two years, I’ve been using a Sony Xperia T. It is not a bad phone on the whole, although I have had a problem or two. The main issue seems to have centred on the microphone. Mrs H has always said that she cannot hear me when I call, and I, being a male, have always thought that she must be holding her phone incorrectly. It never occurred to me that it might be my phone that was the problem!

So the contract is ending and I can now get an upgrade. The problem is that if I upgrade the phone, I have to take on a new contract, or Price Plan as the provider likes to call them. This ‘Plan’ is quite different from the one I currently use, but I think I can live with it.

The new phone is to be a Nokia 735, which is a Windows phone, as opposed to my usual choice of Android. How different this is going to be, only time will tell.

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I think I may have mentioned this, but our youngest son R*** (we have two) has Autism and sometimes getting him to comply with things that need to be done, can be a trial. One of the hardest tasks is shaving. It is not something he can do for himself, so it is down to me to tackle it whenever necessary. For a number of years we/I have relied on either disposable razors or the much more expensive multi blade jobs. Now, I have never liked shaving with an electric shaver. I have never found it gives a close enough shave. So, like R***, I have tended to utilise the same razors that we get for him. That is until just under a year ago. I had been browsing eBay for razors, in the hope of finding a razor with good reviews at a reasonable price. It was not going well, until I spotted what everyone calls an ‘old fashioned’ safety razor. The price was very cheap and I thought why not? If it is no good, then I would have only lost a couple of pounds (it was that cheap), and it could not be any worse that the ones I had been using.

It was a revelation! It was the best shave I had had in a long time. I quickly realised though, that I would need to get a shaving brush and soap. Squirty foam from a can, did not look right at all.

So this brings me round to the point of this part of my post. Two weeks ago, I was giving R*** his weekend shave and I was having real problems. The multi blade, disposable just was not shaving. It was dragging on his face, and I could see he was beginning to get upset, as it must have been very uncomfortable and possibly, quite painful. I was at a loss as to what I could do. I needed to complete his shave, but was not going to do it the way was doing. You may know where this is going, but I thought I would try using my razor. What was there to lose? Guess what? Revelation time again! It was so smooth and easy to do, and it was all over in 5 minutes, rather than the usual 10.

We now each have our own Weishi (that’s the brand name) razor and all is happy in the mens toilet procedures now.

 

Just give up now ….

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I don’t know why I do it. It’s never going to happen. It’s just a waste of money. I am of course talking about the National Lottery, or Lotto as we now call it. The chances of winning even the lowest prize are so poor, that it beggars belief why anybody does it. I have a couple of pounds left in my online account, and I’ve decided, that when that’s gone, it’s gone. Mind you, I have said that before and I’m still losing money!!

Earlier this week, I signed up for a WordPress blogging course. Now, I don’t really know what I’ve let myself in for, but if it improves my postings and increases traffic, I’ll be more than happy. My blog tends to just random posts, whenever I feel like it. This one is a prime example. The main reason for posting just does not exist. It’s just a random post about nothing in particular. Just musings from the day and the time since my last post. Random.

Here’s something that is quite random: since my operation, I’ve been trying to eat a little more healthily than before, and I’ve taken to eaten a lot of foods that I would not have opted for before. For example, I’m now eating more salad leaves than I have ever eaten in my life. Practically every day I will have some food that has a portion of salad leaves. Today, seeing as we had a few tomatoes that needed eating, I suggested to K*** that we have them, sliced on some fresh bread drizzled with olive oil. I cannot think of any occasion in the past, when I would have even though that would be an option for lunch. In the end, K*** turned the idea in a kind of bruschetta, which was absolutely delicious.

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R*** has been okay today. He has been having problems with a build up of earwax, which can be quite painful. He had his ears washed out on Thursday and he was great afterwards. Last night, at around 8pm, he suddenly lost it. He was crying and shouting and stamping his feet. I went to see what the problem was and he went for me. It was the usual nipping and grabbing. He is a very strong lad and when he grabs your arm and squeezes, it really hurts. He eventually calmed down after K*** administered his PRN (http://bit.ly/1y4eRZW) but we have no idea why it happened. Today he has been as different again. I suppose it’s just part of his Autism. Something upset him and he dealt with it in the only way he knows. But it is difficult.

Back to sort of normal ….

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For the past few posts, I have been concentrating on my “Life changer” thread. That thread is now being wound down and I’ll continue with my normal postings.

So where are we now? Well because of the operation, I’m currently on sick leave whilst I build up my strength again. As I mentioned before, I should be off work for about 3 months or so. Given the job I do, it may be a little shorter than that, I don’t know yet and I’m not going to push for an early return to work! It’s been 4 weeks to the date, since I had my operation and apart from a response to an email I sent, nobody from my team has been in touch at all! I’m not surprised by that, but more than a little disappointed that I’ve not even had a ‘Get Well soon’ card. I did not expect anything from my previous team, but I thought there may be something from the new team.

I have for many years (at least 40 if I’m counting) had a small health insurance plan that I pay into for K*** and me. This plan pays for dental and optician treatment and also pays a daily fixed amount for hospital inpatients. I have claimed for K*** before, but this was the first time for myself. It’s not a massive amount considering what has been paid in, but it’s a nice little some as bonus.

So with some of the money, I bought myself a new camera. I have wanted an SLR (Single Lens Reflex) type camera for a long time, but I did not want one of those huge things that need multiple lenses, that I used to have before. So I settled on what they call a ‘Bridge Camera‘, a camera that is between an ‘SLR’ and a ‘Point-and-Shoot’. It appears to work very well, but I need to get some kind of bag, and possibly a better neck strap. A trip to Amazon or eBay is required now.

One of the downsides to having this new valve (or maybe an upside depending on your point of view) is that I am now limited on the amount of alcohol I can take. I’m supposed to stop all together or have a maximum of 3 units per day. Very slightly went over that limit yesterday, and I’ll explain why. You may recall, that our youngest son is Autistic. One of his obsessions is to have the VHS video player playing a video all night long. We think that it might be some kind of ‘security blanket’ for him, and to be honest, we have now got used to it. Last night there was a problem! One of the tapes he has been watching seemed to get jammed. I thought that the tape had stretched and that the player could not read it. Now for most people/kids that would not be a big problem, but for R*** it was a major disaster. As usual, this caused him a great deal of stress and this started to come out as violence. That is when the limit was breached! It was only a very small whiskey, but still it was a breach of the limits I was working to.

We gave the medication he has, to calm him down and he seemed to accept that I would sort out the problem the next day. However, the medication had the effect of giving him a new lease of life and he was up and down until around 3am. This meant that both K*** and me only really dozed during that time. I tried the tape in another machine and it seemed to work okay, so I’m thinking that it may be the machine that is at fault rather than the tape. So I have now managed to swap out his VHS machine for the one we had downstairs. We never really watch VHS videos anymore, so it will not be too much of a problem.

Fingers crossed for a better night tonight.

It gets closer …..

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    I don’t need to tell anyone, but it just over a week to go. Then we can get back to some form of normality, whatever that may be. Just a couple of presents to get, (last minute hints from Mrs H) and I should be done. So I’ll be nipping off to the White Rose centre tomorrow, and I also need to pay a visit to Aldi too. I need to get some Parmesan, and it seems to be one of the best places to buy it. We also bought some ‘mini’ mince pies there last year. They came out top in the Which Best Buy.

     This week will see the usual Christmas Fuddles start. Ours is on Friday, but I’ve also been invited to the one at my previous office, on Wednesday. I made the mistake of saying I would go there on Monday or Tuesday and was told that I was invited. I now have to find an excuse not to go. I never liked it when I worked there, so I’m not going to like it now. I think D*** will get it, but the rest of them won’t.

     K*** and me went to R***’s college on Friday. It is just outside Barnsley, and we (replace the with ‘I’) had to drive through dreadful weather. It was icy, foggy, and rainy at the same time. There had been numerous accidents on the M1, and it had been closed in parts, so we opted to travel the A1 instead. I think, if the weather had been better, it would have proved to be the more suitable road. It certainly seemed a lot easier to find his college this time, and I don’t think it was anything to do with the fact we have been three times before.

     It was a good day, and it was nice to see the flat where R*** has his base, and to meet the support staff he works with. I have just thought though. He currently uses this flat just as a day base. He does not sleep there when he is on respite, because it is/was a shared resource. The person who shared with him, will be based in another flat in the future. I wonder if they have given any thought to R*** using this flat as his respite flat now. To me it makes sense, although there may be many reason why the management cannot put this in place. However, it is worth a phone call next week. I shall let you know.

     His psychiatrist and the community nurse, that works with us, told K*** that they wanted to have their next meeting at a different place from usual. They tried to sell it to me as a way of getting him used to different places. However, it came out in Friday’s meeting, that this place is some kind of secure unit/place of safety. It did not click at first, but his psychiatrist want to get him on to an anti-psychotic drug to help manage his behaviour. Now we had this before, when he was put on a drug, and it completely disagreed with him. It made him worse. He was depressed, sobbing and weeping often, and also self-harming. The self-harm was only minor, hitting the side of his head and nipping himself, but the specialist wanted to increase the drug, bur we said we wanted to stop it. After a day or too, he was back to ’normal’ or as normal as he was before.  So what this new psychiatrist want to do, is to take him into ‘hospital’ so they can observe and monitor him whilst on this drug. This secure unit is the ‘hospital’ they want to use. We are going to have to be very careful here. I don’t want him on any anti-psychotics, and I think K*** feels the same, but I feel that there may be plans that we are not party to. A year ago, he was a teenager with Autism and challenging behaviour. Now it seems that he some kind of psychopath and a danger to the community !!!!! When did that all change.

An interesting, if tiring week.

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After all the fuss R*** made last Saturday and Sunday, about not going away with school, come the day, he went off with no problems at all !! Mrs H had gone off to the hospital, for her operation earlier,so the only issue was him wandering around saying “Where’s Mum?” As soon as the bus arrived he was off with smiles. I got into work around 09:20, which was earlier than I hoped. Mrs H sent me regular updates, on what was happening to her. She went down to theatre at around 2pm, and she sent me a txt at about 5pm to say that it was all done. I drove down to the hospital to pick her up. There wasn’t much point in me going before, as I would have only got in the way. So I had the rest of the week off. I am applying for Special Leave for the four days. Nobody seems to think it will be a problem.

Her arm, or more to the point, the wound, looks quite okay to me. She is very worried that it may get infected, but it’s not going to happen. There has been a bit of blood leakage, but the practice nurse (nearly called her the District nurse – showing my age there) changed the dressing again, and this time put a few steri-strips on, which seemed to do the trick.

Work is beginning to get more interesting. I am now occupying a different desk whilst the usual person is on leave. I am now more or less in the centre of the office. But it is a small space !! There are 14 people in a quarter of the space I am used to. Hopefully, I will begin to feel a little more integrated as the week goes on. It will be good to get my own space though, although, I get the impression, that ‘hot-desking’ may be the norm in this team. Team !!!! Now that’s a new concept !!

R*** was back on Friday. Both his support worker and his ‘intervener’ were on the trip, and both sent regular txt messages to K***, throughout the week. I went to pick him up in the late afternoon, and all of the staff that had been, said he had had a fantastic time. There had been no problems and he had eaten well. They were so proud of him. It seems that he is also being a star at school this week, with no problems there either. That’s one of the things with his Autism though. One moment he can be really happy and good fun, then the next moment, he can just turn. It is strange when he comes down for his tea. Usually the same, either baked beans or tinned spaghetti with toast (not on toast!!) He’ll flick through Nick Jr 2 channel, checking out what is on for the next 12 hours. Then he walks round , droning, with his hands over his ears. The volume on the TV is down, and the only noise we can hear is him. He can hear something though, and it is very disturbing to him. This will go on for ten to fifteen minutes, then he will settle down and eat. Then it’s back to his computer.

Awful afternoon

/ Tony / 1 Comment

I was about a hundred metres down the road, when I spotted the Police car behind me. A quick look at the speedo’ showed me I was under the limit. Just! So I drove the whole road at 58 miles per hour, with the police car 20 foot behind me. Now, will he turn into the village, or is he going straight on? Nope, he’s sticking with me. Should I go along the main road, or up the hill? Main road, I think? Bloody cop is still with me. He’ll be on to Clifford, I thought as I turned into my street. Oh dear, an ambulance. I wonder who has died now. Just a minute….. it’s just moved, then stopped outside our house. There’s a police car there too. What the fuck is going on? I parked and got out of the car. The police that had been behind me was now parked outside our house too!!!! What in God’s name…..

“Alright mate?” asked the police officer that had been behind me.

“Er…..yeah. Thanks. What er……”

I went inside, and the scene that greeted me was bizarre to say the least. S**** was sat on the floor, holding onto R***. K*** was trying to explain to the two paramedics, what R*** and his Autism was about. R*** was looking very pale and shaken, and sobbing a little. The two paramedics were trying to talk to R*** to see if he was okay, but getting no response as usual. The two police officers were stood around, looking genuinely concerned but clueless (not their fault, probably never dealt with someone like R*** before).

Apparently R*** had had an ‘episode’. Not the usual, type of ‘episode’. This time the medication did not work and he had completely lost it. Both K*** and S**** were concerned for theirs and R***’s safety, and that’s why the emergency services had been called. It must be standard if there is any kind of violence that the police attend, which is why the ambulance had parked up before our house first.

The paramedics were great. They asked what we wanted to do with R***. Did we want him to go to hospital or what. Well, I thought that if he went to hospital, the first thing they would do would be to get a psych doctor, and sedate him. That would not solve anything. The paramedics stuck with us, and were there a good hour, testing his blood pressure, SATS and everything. The police were being looked after by S****, doing his ‘coffee shop’ thing.

He calmed down, enough for them to leave, but he was still very hyperactive after they had gone. It is now 23:45, and he is still up. Quite calm, but it is like living on an knife edge. We just don’t know if he is settled or if we are going to have some more.

I have to say though, I felt that the paramedics did a brilliant job. What did get me though was the paperwork they had to fill in. That took over 20 minutes to do. C’mon, give them some technology!!! I mean, in this day and age, they still have to fill in paper forms. Dear Health Secretary, if those forms were electronic, and on a Tablet PC or an iPad, then maybe less time would be spent filling in  paper!!!!

Weekend over ???

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Yes it is over, and to be honest, I’m quite glad about it. It wasn’t the painting that was the problem, although that was stressful in itself, it was the problems with R. It must have been the new medication. Sunday was just as bad as Saturday. It just was not him, and he was so distressed. Mrs H rang his consultant on Monday morning, and explained just what he was like, and that we were very concerned. He did not settle down to sleep on Saturday, until gone half past one, and it was the same Sunday night. The consultant said that it was not a usual side effect, and to halve down the dosage, He was better last night, although still a bit agitated. He did settle to sleep earlier though. Mrs H says he was a ‘bit bouncy’ this morning, which usually means he was he was running up and down the room on his toes. If he is smiling or laughing, then we are fine. If he is holding his ears, then it indicates that he is getting upset,

I cannot help being a bit bemused at the comment “….not a usual side effect….”, He has never had that medication before, and ALL Autistic kids/people have different reactions to different things, how can anyone know what the side effects will be. Still, they appear to be listening to us.

Back to work

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     Well not really ‘back to work’ in the sense that others may say. It was back to work after the New Year. Of course, the IT system failed again. Lost a couple of network drives over the weekend, so the automatic program that should have run at 5 past midnight did not run. That put me back a couple of hours, so some of today’s work will have to be done tomorrow.

     Big problems with the youngest last night. Screaming and shouting and intense anger  at around 10pm. Nothing seemed to calm him down at first, then he was awake up until about 2am. Tonight, much the same. At around 9pm, we got the screaming and shouting and the anger, but tonight he was crying and saying he was so unhappy. Now, he was probably reciting a DVD or video that he has remembered, but it was very upsetting, and had me convinced it was him trying to tell us what is going on !! Who knows. This could be the side effects of the small dose anti-depressant that he has been prescribed, or it may just be another development is his Autism !!! It is now 11pm and he seems to have settled down, but he could turn at any moment.

     Christmas cards are now beginning to get me down !!!! Just want it all to be over. I know, I know, only a couple of days to go, but it is not soon enough. If I had my way, the decorations would go up on the 24th, and come down again on the 26th !!!! I know what you’re thinking …… and I have been expecting a visit from the three Christmas ghosts for many years.

Scary times…..

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   Well the title of this post could mean a number of things …… the economy, the public sector cuts, the terror threats, even the Ryder Cup !!!!! But no, this post relates to my offspring(s). The youngest is 18 tomorrow, and three weeks later, the eldest is 21. Now that is scary !! When S**** was 18, it was not so bad. I felt like a proud Dad. However, R*** being 18 seems to make me feel really old. A strange feeling and I don’t know if I like it at all.

   Moving on … As a birthday treat, we took R*** to see the new Thomas the Tank movie yesterday. We have not taken him to the cinema often, as with his Autistic condition, he does not like crowds, especially crowds of children. However he was a star. Singing and laughing along. Of course, most of the time, he spent with his fingers in his ears, but that is normal for him. Yes Thomas’s Misty Island Rescue is a must.

   Now, the gripe……… why does the sound in cinemas have to be so loud? It was too loud for me, so for anyone with a noise tolerance condition, such as R*** has, it must have been painful. We were sat 2 rows from the back of the cinema, and it was loud. I do not understand.