Care Review

When you see somebody everyday, and during lockdown 24/7, you tend not to notice subtle changes in them. So it has been fascinating to read a document , created by Joshua’s Social Worker in summer 2019, so that it can be updated in a meeting that we are due to have this morning. It will be an online meeting, whereas the 2019 one was held in our home, and I am expecting both respite and daycare to be represented today as well as the epilepsy nurse. The meeting is due to take up to two hours and the purpose is to update the 2019 Care Review. I found it on my laptop last night and scanned it then, and have just read it more thoroughly now. There are significant changes that have taken place since 2019:

  • At that time Joshua attended school and had another year to run, but of course his school career ended abruptly in March 2020, and his weekend respite provision around the same time. Yorkshire Grandma attended the last Care Review, before taking Joshua out for the day, but she retired as his caregiver also in Spring 2020, due to Covid-19 when she moved away to live with her daughter. At the time of the Care Review we took all of this support rather for granted and we could have had no idea that the pandemic was going to remove it all so abruptly and leave us as his parents, as sole carers.
  • The 2019 Care Review talks about behaviour problems, in particular his kicking. Joshua no longer kicks doors in frustration, this was a habit that developed at school in the 6th Form and he was clearly communicating, with the benefit of hindsight, that he was not happy there and he was ready for a different form of input. I suspect Daycare would be surprised to hear that the happy, smiling young man that they have got to know since February 2022, used to have behaviours issues like that and that school had developed a Behaviour Management Plan for him.
  • Joshua has much more language now than he had back in 2019, which is delightful. He expresses ” Thank you” when he arrives at Daycare, showing how pleased he is to be there and he has called it “Play” on several occasions and even recognising a day at home with Mum constituted “No Play”. Daycare heard his voice from day 1 , whereas there were staff at school who did not realise that he could speak there. In 2019, he would point and gesture more than ask for things, whereas on a daily basis Joshua is asking for ” mash”, “Bix”, “Crisps” and “Giant” – meaning bed where he listens to The Smartest Giant in Town. Joshua is finding new words all the time at the moment which I find thrilling and I celebrate every new word that he adds to his vocabulary.
  • In 2019 we made much more use of his wheelchair than we do now, in fact his wheelchair lives at Daycare for them to use. There are three main reasons for that : firstly, we are more confident of how far Joshua will walk when out shopping for instance, and we do not ask him to walk further than he can manage without a break – inevitably in a café! Secondly, the wheelchair was a safety net for when he had seizures, to know we could get him back to the car. But now he is having clusters of seizures every week to ten days, so they are less likely to happen when out and about. Thirdly, Joshua behaves better when out in the community so we are more confident that he will oblige and go where we want him to go, without objecting and having a tantrum when he does not get his own way or trying to run off. We can now rationalise more with him and explain that we have one more shop to go to and then we will go to a café, and that appeases him as his understanding has improved.
  • In 2019, Joshua wore a helmet at school and respite to protect himself from head injuries with seizures. Now he never wears it – in fact it is too small! His seizures have changed nature and they are no longer tonic clonic violent seizures that send him crashing to the ground, which is where the risk came from. Now they are more likely to be a prolonger cluster of seizures that involve tensing and relaxing of muscles, like spasms, and he would tend to be seated or lying down.
  • Now in 2022 Joshua is much more able to express himself and to make his own wishes known and he more often dictates what he would like to do. He will now ask for “Car” or “Pod” when he wants to use them and this preference has developed over lockdown. Rather than objecting in 2019 when he did not want to do something, he is much more likely to tell us what he would like to do, which is a brilliant development and makes for a much happier Joshua, if he gets his way. It is not always possible straight away but I am now more able to negotiate with him – lets go to the Post Office first for example, then we can play in the Pod. This seems to appease him, most of the time but it is wonderful to see him exercise his own freewill and wherever possible I try to reward a request. of course this is now more possible because I am no longer working, so I am more likely to have the time to be able to allow him to get his own way.

Now I knew that Joshua had developed and improved over the last two years when I have been his main carer, I knew that Lockdown actually suited him, but it is only now that I compare how he is on a range of aspects, with how he was when he was 18 years old, that I can see how much he has improved in so many different ways. I knew that he was happier now than he has been for sometime, but now it is a revelation to me the reasons for that contentment and I am thrilled. Onward and upwards Joshua.

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