It got better . . .


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.

Difficult day tomorrow …


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 …


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 …


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.