A Day Off from an Off Day

I had already been anxious about Joshua’s behaviour while at respite, when I had a call mid morning that confirmed my fears. While out on a walk, he had stamped hard on his footplate , like he has started to do, and he sheared the bolt off and the footplate  broke off. He had got back using one footplate with his legs crossed, but they had wanted to let me know that it was broken. I explained that given how rough he was with it, I was not at all surprised. I told them not to worry, that I would call wheelchair services next week to get it repaired. But that told me something about his mood.

I was then told that he had slapped a member of staff who was trying to get him into the shower. He does not like a shower, like his father, he is more of a bath-man. But, since he tried to stand up in their raised bath months ago, they did not feel safe and so he has had to have showers. So he was using his most effective ‘no’ but it made me feel terrible. No parent likes to hear that their child is hitting out, especially at people who are trying to take care of him!

So I came off the phone really disappointed, unable to stop thinking about my aggressive, angry son. Perhaps he was behaving this way because he was not happy there anymore? It seemed like he was going to leave their care, under a big black cloud. I then became tense and expected the phone to ring again with more bad news. So we took the perfect antidote, and we went out for the rest of the day to the seaside, with my mobile phone switched on of course. We did some retail therapy – even spending Joshua’s Christmas money on him-, then we had fish and chips for lunch on the prom and then we took the dogs for a long walk along the beach where our cobwebs were blown away. It was a great afternoon and definitely took my mind off Joshua for a while and I was shattered when we got home. I was relieved when I called at 9pm to hear that there had been no more incidents, apart from some door kicking. He was still up, causing chaos, but things had settled down somewhat. So I was able to go to bed more relaxed about him and once again I have slept for almost 7 hours, so it would seem to be Joshua who is the cause of my wakefulness, even if he himself is not awake, my mind knows it is responsible for him.

Respite enables us to do things that we cannot easily do with Joshua. I had been making the most of our ‘weekends off’ by organising mini-breaks this year, but it has been lovely to just have some time at home too. Yesterday we took a longer walk than he would have tolerated in the cold wind, we were able to go into more than one shop without a complaint, we ate lunch in a cafe that was crowded so he would have objected to the wait for food and I had a nap when we got home and none of these things would have been possible if Joshua had been in our care and for that, I am endlessly grateful.


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