Autism

Glad that’s over . . . hopefully

/ Tony / 3 Comments

The past ten days or so have been a bit stressful, to say the least. It started on the Monday when my father-in-law was rushed into hospital with suspected pneumonia. My wife stayed with him until 3am on Tuesday, in the A & E department, hoping to get him onto a ward. That didn’t happen until Tuesday evening. Then on Wednesday, in a bizarre twist, my Mother was rushed into the same hospital with the same suspected condition. She too was left in A & E for over 19 hours until a bed could be found. The staff, what little there was, were brilliant and did all they could with the limited resources available, but unfortunately, they tend to bear the brunt of patient and visitor frustrations.

They are both out now and on the mend, hopefully.

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Another bit of stress came when our youngest came for a home visit. He has an obsession with Mickey Mouse and his flat, at the care home has many pictures and wall stickers of this cartoon character. Towards the end of July, he came for a visit. He came with a request for “51 Mickey Mouse stickers!!” He was able to show me the ones he wanted. They were located in South Africa and at a price of 1900 Rand (plus postage), but I managed to explain that they were too expensive, as it worked out to around £100. He accepted this, but almost immediately ask for “4 Mickey Mouse stickers.” He then showed me the new ones, and I agreed to get them.

That’s when the problem started. The seller was on holiday and wouldn’t be back until the 16th of August. He seemed to accept this, but then the nattering began. He was asking everyone for “4 stickers.” We managed to order them eventually and told him that they would be arriving at his flat on Monday 22nd. All was going well but then a new phase came in. He started asking for “16 stickers on Tuesday!” Nobody had any idea about these new stickers, but he kept mentioning them.

The stickers finally arrived on the 23rd and he is very happy with them. It was later that day when it suddenly struck me where the “16 stickers on Tuesday” had come from! I had told him about the seller being on holiday and had said I would order the stickers when he came back … the 16th of August, which was also a Tuesday. I am convinced, that in his Autistic mind he was checking that the stickers had been ordered on Tuesday the 16th!

Hello COVID Year 3

/ Tony / Leave a comment

R**s came home for the weekend on Friday. We have not seen him since 30th December. He likes to be in his flat over the New Year as fireworks upset him, and at his care home, they are able to minimise any startling noise. So it’s a lot calmer for him.


The home went into ‘lock-down’ on the 2nd of January, when one of the staff tested positive. As per the Government guidelines (sic) they were not allowing home visits until there was 28 (?) clear days without any new infections. That changed about a week ago to 14 days, and so he was able to come and visit for the weekend

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Leeds Civic Hall

We had his assessment on Wednesday, which was very traumatic. The Social Worker went through everything with us, and noted everything about him. This should have been done before the funding meeting, but there was nobody available at such short notice, except for the Duty Social Worker. He had little or no knowledge of R*** or his case, so could only go on what he was being told.


The case now has to go to a panel, who will decide if it is an appropriate placement. If it is, and I think we all made a good case, then it goes to a Financial Assessment to see if some of the funding needs to come from R***’s benefits, before going to yet another panel for financial approval.
It’s just more worries on top of more worries, especially as this is likely to happen every year.

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Work is turning into a bit of a chore at the moment. The Assistant Manager left, and it seems that people are jockeying for the position. To be honest, I don’t think any of them are capable. There is more to a managers job, than simply telling others what to do. The boss has her favourites though, so it is down to her as to what happens.


I’m still half-heartedly looking for something else. This job is getting a little too strenuous for me these days. But I don’t want a job that has any form of responsibility. I had enough of that over the past 50 years. I’d love a job, where I can sit at a desk and tap details into a computer system. I wouldn’t want a phone as I’m not very good with people on the telephone. In fact, I’m not very good with people full stop.

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.

No excuse this time . . .

/ Tony / 11 Comments

The title refers to the Christmas staff night out. Just after the last night out in September, I ‘predicted’ that the date would be the 18th of December, which is the last Saturday before Christmas. The manager confirmed that the 18th would be the night. Over the past years, our youngest has been at home on the nights they have chosen, which gave me the perfect reason not to go. As I have explained before, I’m not one for social events and dislike eating out with a number of people, that are not family.

With the youngest (RH) now only coming home every fortnight instead of weekly, the 18th falls on his weekend away. Hence ‘no excuse this time.’ It was okay last time, but this time it will be a little different. Two of the people that I got on well with, have now left and won’t be going, but the three people that I cannot stand are still there and will be invited. All the others, I can take or leave them.

It looks like we will be going to the local Italian for their Christmas menu, then on to a local function hall for a ‘Disco’! I think I can just about manage to cope with the meal, but dancing !!! Not these days.

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DST

Thursday was a difficult day. It was the day of the youngest son’s funding review. For the past 10 years his placement has been fully funded by Continuing Health (CH). It’s part of the NHS that provides social care for adults who need full time care and assistance. There are now question that are being asked is whether CH should be fully funding this or whether the Local Authority should part fund the placement. This meant, that we had to got through a process called the Decision Support Tool or DST to identify who funds what.

It was very distressing, as RH has not ‘got better’ he is still Autistic and still needs the support he has been getting. What is different is that since the pandemic started RH has become a lot more receptive to changes that have occurred. This has been mainly down to the core team that work with him. The things he has done with them would not have seemed possible five years ago.

He has been to Centre Parcs for a few days, then a week ago he was at LegoLand, Brighton and walked the street of Central London, which was amazing.

Not lackadaisical honestly . . .

/ Tony / 2 Comments

Bored

I tend to write blog posts when something comes to mind. It could be on a trip out, or something in the news, and even an event at work. This leads to a rather haphazard approach to my musings. So there are times when I may post a couple of times in a week and then miss a week or two before my next post. This has recently been the case. There has just not been anything that I felt a need to express an opinion about. I could have possibly had a groan about the fuel crisis, but that is of our (their) own making and it will sort itself about.

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Our youngest son is Autistic and lives for 11 days out of 14 at his residential care home near Barnsley. He has his own flat, decorated the way he wants it and is very happy there. He comes to us every other weekend and he looks forward to that. Equally, he looks forward to going back on the following Monday. Yesterday was one of the regular “Multi-Disciplinary Team” meetings and we are always invited. It is basically a way of us getting to know what is happening in the future with his care and to get to know his support team more.

Only went for a carrot

Afterwards, K*** decided that there were a few things we needed, so a trip to Tesco was the next order of the day. We didn’t need much as I had done our usual weekly shop on Monday, but there were a few things we needed for the weekend. Of course, without a list (I always have a list of some kind) things kept appearing in the trolley. In the most, they were things that we did need only we didn’t know we needed.

New hat

I did get a new hat though. It was half price, and I do like to wear a hat sometimes.I have a number of caps, an extensive collection of beanies (homemade), a couple of Panama’s and a couple of fedoras. But this one was a little out of the ordinary for me. It should have been £10.00 but at half price and K***’s staff discount, it brought it down to £4.00. Bargain! As soon as it was paid for, I wore it and I have to say, for the first wear, it was quite comfortable and I think I will get a lot of use out of it.

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!

It got better . . .

/ Tony / 2 Comments

On Tuesday, our youngest was due to have a dental procedure. Because of the way he could react, due to his Autism, this procedure had to take place under a general anaesthetic. He has had general’s before, so it’s not so much of a deal for him. However, COVID-19 has changed everything. My wife was taking him to the hospital, so she needed to have a C-19 swab test on Saturday. That was done in the morning. In the afternoon, she received a phone call saying that the test was ‘inconclusive’ and she have to have another on the Sunday. It’s a 25 mile round trip to the hospital, so it does take a little time out of the day. Of course after the test, she had to isolate, so was unable to work on the Sunday. Fortunately, the second test came back as negative.

Forward to Monday, and the youngest is due his swab. As he was still at his residential care home, his lead carer volunteered to take him for the test. This guy is a bit of a hero. It is nearly 50 miles from the care home, but was quite happy to take him, be with him when tested, before bringing him to us. thankfully, his test was also negative, so we were all geared up for Tuesday.

It was an early appointment, he had to be at the hospital for 9 o’clock. We got him there and my wife got him booked in. I went home to do some shopping, as it was thought he would be there all day. We found out later that the dentist only had the theatre for the morning.

At around 12 o’clock, I got a call from my wife, asking me to come and pick them up. It seems that the person who was due to go for surgery before my son, who also had some kind of special needs, was refusing to cooperate with the dental team. He should have been in theatre for around half past 9, but they just couldn’t get him to go. As the theatre was set-up for his needs, it couldn’t quickly be changed for my son, as the theatre slot was running out of time.

He has now got another appointment, but all the C-19 testing will have to be done again. Thankfully the youngest took it all in his stride. A few years ago, he would have had a complete melt-down at the plans being changed, but we were so proud of the way he reacted or didn’t react in fact.

It seems to have had no effect on him at all, and he was his usual self the following day. At the moment, his flat, at the care home is being redecorated, so he would have had to be with us for the week anyway. However, the job is going to take longer than expected, so two of his care team are taking him away to Centre-Parcs for a few days until the work is finished. He doesn’t know yet, and we are hoping that he will just accept it without any upset. We wait and see.

More up and down …

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downloadThis week has been a bit up and down again. The dishwasher was fixed. It seems there was a small piece of plastic stuck in the pump. It was only about the size of a small child’s fingernail, but was jamming the pump and stopping it from working. A local person came Tuesday lunchtime and fixed it within about 30 minutes, and that included having a look at our oven which hadn’t worked properly for a couple of years. That’ll be fixed over the weekend. We are going to keep this guy’s number.

Then came the downer! Our youngest son is Autistic and is in the ASDprocess of being phased in full-time residential care. He had been going on a Monday, sleeping 11 nights in his own flat and then coming here for a weekend visit. They test him on a weekly basis for C19 and unfortunately, he tested positive. They let us know yesterday morning. It’s a mystery how he got it though. His care team haven’t tested positive and being Autistic he doesn’t socialise with anyone else in his unit, so who knows. He seems to be okay and not showing any symptoms, but they are keeping a close eye on him. All very distressing. He was supposed to be coming home next week to have dental surgery, but that’s all put on the back burner for now. Looks like he’ll be on ‘lock-down’ until the end of March. The amazing thing is that for a person, because of his condition doesn’t accept changes easily he seems to somehow understand what is going on. We are very proud of him.

On the upside though, my father-in-law received his 1st vaccine jab on Tuesday. Which was a great relief for everyone.

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Then this morning we awoke to this scene:IMG_20210114_104851004_HDR It was expected, but not the amount that we have. At the time of writing (12:15) there looks to be about 4″ to 5″ at least. It seems to be getting a bit lighter and may even turn to rain later in the day. Not sure when it started.  I had to get up for a drink of water at around 5:00 and there was nothing then, so it must have come down quickly after then.

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.

Difficult times for all here …

/ Tony / Leave a comment

Our youngest son R***, as you may know, is Autistic. He has a placement at a residential care centre and for the past 5 years, we have been increasing his stays there, from 1 day a fortnight to now 4 nights a week. He has gradually accepted the increase and we believe the reason was that we took it slowly. On the 23rd of March, he went off as usual. He has a Motability car and the staff at the care centre, pick him up Monday morning and return him home on Friday afternoon. Because of the issues caused by this virus, the care centre did not want their staff to bring him home, which we understood.

The plan was that K*** would take him back on Monday and she would pick him back up on Friday. It was thought that this would be the most practical solution. However, it all changed the day after. When it was announced that the country was going into almost full ‘lockdown’ with some restrictions on movement. The care centre rang and said that it would wiser to keep him there, as if he came home, he couldn’t go back until it was all over.

This caused K*** and me a fair bit of distress, but after a lot of deep thinking on the ‘pros and cons’ we decided that it would be in the interest of all, including R*** that he stayed put. It has always been the intention that he goes to live there on a full-time basis, but we wanted to build it up slowly, so we all gradually got used to it. This virus has changed everything. His care workers explained that there were problems and that he could not go home on Friday as usual. This immediately led him to ask about the next weekend, and when he gets something into his head, he will just keep repeating the question until he gets an answer. On Monday this week they changed his planner and explained that he could not go home for another two weeks. This of course led him to start asking (nattering) about going home on the 17th April.

We had said to his care workers, who know him well that it would be better coming from on how to progress this. So they took the decision yesterday to tell him that he was going to stay until the 7th of August. He appears from what they tell us, that he has more or less accepted this. He has written the dates in his diary and has got one of his care workers to add the words ‘Home’ to the weekends from the 7th August.

At the end of all this, he/we could have benefited from all this, as it might now be possible for us to create a planner for him that shows him to be away for however many days we feel necessary. It is what we want for him, and this virus has pushed us a lot further than we had pictured.

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No pictures today as I could not find any that I felt were appropriate.

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.

Nearly over …

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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 …

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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 …

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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

/ Tony / 1 Comment

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 …

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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?

Worrying day, going well …

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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!

Do they really understand …

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Autism, along with its related spectrum disorders, has become a bit of a ‘buzzword’ at the moment. We have had World Autism Day, British television programmes such as the drama ‘The A Word’ and the documentary ‘Employable Me’ seek to show the some of the issues surrounding ASD. Even the Lord Mayors Charity, here in Leeds is supporting Specialist Autism Services this year.

Now whilst all this ‘awareness’ is to be praised and very welcome, it can lead to some misconceptions. For example, in The A Word, the child with Autism has an obsession with music and is nearly always seen wearing a pair of headphones. My son R*** like music and does wear headphones. However, these headphones are noise cancelling headphones which wears when external noises become too much for him. I was asked by a colleague, how he was doing these days and I showed them a recent photograph of him at his day services. His was digging in the service allotment, and wearing his headphones as he does. The person I was show the pictures to said that he “looked liked the boy off the TV” and “what does he listen to?” It was very difficulty to get across why he wears them.

So, pleased that I am, that this awareness is now being pushed forward, I think there is still a long way to go before many people can begin to understand ASD.

Been another long day …

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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.

 

I hate wallpaper designers

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I am going to have a bit of a rant, so you are forewarned. I shall endeavour to explain the reason for my rant.

For the past two days, I have been decorating my youngest sons’ bedroom. Now it’s not a large room by any standard, but he seems to like it. R*** is Autistic and with that in mind we had decided to redecorate the room using the same wallpaper as before. We just wanted to refresh the décor, but not to change it as change can upset him. I had measured up and estimated (and this is where the title of my post begins to show its face) that “depending on the pattern” I would need three rolls of wallpaper. As is usual, we bought four rolls with the intention of returning one roll un-used.

Our house is fairly modern. It’s around twenty years old and one of ten built by the same builder. You would expect that the height of the rooms would be of some form of national standard and I understand from the brochure, that we received with the house that this is the case. So to my simple mind, it should be blatantly obvious to wallpaper manufacturers that this ‘standard height’ exists. However it would seem that this is not the way wallpaper designers/manufacturers think, as my rant below will show.

To the job in hand. I measured and cut the first length of wallpaper, leaving a two centimetre trim at both ends. The said length was pasted and hung to the wall without any issues. This is where the problem began. I again measured and prepared to cut the second length only to discover, that because of pattern repeat I would lose over 1 .2 metre of paper before the pattern matched. A quick calculation on the smartphone app, showed that I could only get three full lengths of paper, with a length that was twenty centimetres short. More smartphone calculations showed that I was not going to get away with only three rolls. At £12.00 per roll, it is not a cheap option to use four rolls. I guessed that had the pattern been, say ten centimetre shorter, three rolls would have been enough. Or if the roll had been another thirty centimetres longer, three rolls would have been enough.

I am now angry about this! Surely I shouted, to nobody in particular, it would be a simple enough task to ensure that wallpaper sizes complement standard wall sizes. But of course, if that were to happen, then I would have only spent £36.00 rather than the £48.00 that the wallpaper designer/manufacturer wanted me to spend. So it is my belief, that these people design wallpaper, so that we mere mortals have to purchase more than we really need. Thus increasing their profit and thereby causing me grief!

Rant over!

(I suppose I could always use plain wallpaper and add my own designs……hmmm food for thought there!)

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.