Birthday Treat

Those of you who are regular readers of this blog will know the fight that we have been having for respite for a year now : Joshua is funded to have one weekend in respite every month, but he has not been in receipt of that service since February 2020. Covid meant that his respite provision closed in lockdown, which was fine with us as we would not have sent him then anyway, the same as we shielded him from school. But it meant that in March 2020, we lost school, Yorkshire Grandma who was shielding and his respite service all at the same time and the onus was totally on us, his parents, for two full years, 24/7. But from this time last year, I asked them to book him in again, as I originally wanted him to resume familiar respite , before he accessed daycare. However, they have had a staffing crisis, having lost staff during the pandemic, they have not been able to recruit to social care and so have had insufficient resources so could not take Joshua for his overnight stays. I have been in regular contact with the manager throughout the last 2.5 years, and while very apologetic, her hands have been tied. I tried to make it easier for her to accommodate him by saying that we would be happy with a single night and that it could be any night of the week, it was not necessary for it to fall at a weekend, now that we are both retired.

I have now heard that she is planning on offering us one night, on Friday 30th September, so he would go after daycare and we would collect him some time on the Saturday. After all this time I was thrilled to be offered anything at all, but the date is just perfect : it is my birthday on 28th and my husband’s on 1st October, so we will be able to go out for a birthday meal while he is being taken care of. I emailed back immediately to accept and now I just hope that all of her plans now come to fruition.

As it will have been a full two and a half years since he last stayed with them, and they will have had staffing changes during that time, we are talking about him going for an afternoon familiarisation first of all, sometime in September, rather than returning straight back to an overnight stay. We are lucky that Joshua is pretty laid back and so I will expect him to embrace the change and enjoy the new experience.

You may also recall that, in frustration at the lack of respite from this provider, our Social Worker had encouraged us to look at another, in our home town, as an alternative. I wrote about our experience of two cancelled appointments and then the fact that it is a nursing home with the majority being permanent residents, that also offers some respite. I emailed them in the middle of July with concerns about their lack of transition visits and the fact that they would not assign particular staff to Joshua during his stays. I have heard nothing back since that email over three weeks ago now. Last time their lack of response was blamed on a Covid-19 outbreak, this time I have been told that they have been on holiday, but their lack of responsiveness adds to the doubts about their service that I already have. So I am delighted that it looks like his original respite might be coming good just in time.

My best friend has kindly been having Joshua overnight at her house once a month, while we have had no formal respite, and it is clear that he loves going to stay. So I told her that as our respite was coming back on stream hopefully, it meant that her and her family were ” off the hook” from next month. She replied that she liked being on the hook, so we shall see if his visits continue in the future, once we get to the Autumn. He is already booked in for a night later this month. My sister and brother in law also had him to stay last month, which went really well and Joshua certainly enjoyed his stay in their bungalow. So family and friends have done their best to plug our respite gap in the interim, meaning that I know we are a lot better off than some families. But the respite provision for children and adults locally is very scarce and so it is difficult to be granted, even though it can be a lifeline for exhausted, stressed families who simply need a short break. Our time without Joshua is not always used for treats such as nights or meals out, we can use the break to catch up on much-needed sleep or perhaps, as is happening next time, to have a meeting without worrying about getting back in time for when daycare closes.

So, fingers crossed that this date on 30th September can go ahead and happen and that it marks the resumption of a respite service that suited us all.

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