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.

Bigger than expected …


The new “Garden Cupboard” is built and in place. It is a lot bigger than I expected and not as stable as I think it should be. The location where I The Cupboardsited has a slight gradient to it so I thought that I needed to raise one end up on bricks. That might not be the case as it seems that the floor has a bit of give in it. This means that with being raised up a little at one end, it is a little difficult to close the lid properly.  I have a shelf to fasten in yet which should help with the stability, so we shall see what happens then. The shelf that I’m using is the side  of an old cabin bed that the eldest used have in. He grew too tall for it and we had to get him another and as I’m a bit of a wood-nerd, I refused to throw any wooden parts away. I knew they would come in useful someday.

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The youngest is back from his midweek respite this afternoon. His usual lead carer has left to work elsewhere and this could have serious repercussions for everyone. K*** is quite worried about it. The lead carer he had was very good with him and knew all his quirks and ways. One of his ‘quirks’ is when he is asked if he wants to do something. They are big on personal choice, but with R*** you have to expand the choice range. For example it is no good saying “R*** do you want to go shopping?” as he will invariably respond with No shopping!” That “No” response would mean he never actually take part in any activity as it would always be ”No…” We found out over the years that you have to give him a choice of two things. So instead of saying “… do you want to go shopping?” the question would be something like “R*** do you want to go shopping or go for a walk by the river?” That type of question will always receive a positive response to either one of the two choices. So in actual fact he is getting more choice not less.

It is that kind of thing that they don’t all seems to get their heads around, and it is a worry. The next few weeks are going to be a challenge, especially as from the beginning of July his respite days are to increase. There is going to be a lot of crossed fingers in this house!