We are still trying to solve the respite issue , in that our pre-Covid respite provider has not been able to recruit sufficient staff for them to be able to have Joshua back with them and so he has not been there for his weekends away, since February 2020. Our social worker suggested that we look for an alternative provider, just in case they never re-open. So yesterday, two ladies came from a local nursing home, that offers respite, to assess Joshua’s needs, to see if they could meet them. They were both lovely and we sat talking for 90 minutes, much to Joshua’s frustration. He came to say hello but breezed in and out thereafter, making demands for food or music to try to interrupt and distract us.
It became clear that Joshua was our specialist subject and that we had stories galore to illustrate every question they asked about his mobility, medication, general health, sleeping behaviour for instance, so they had plenty of background material to work with, as well as seeing, albeit briefly, the young man in question.
My reservation is that it is a nursing home, catering for adults from 18 to elderly and the majority are in wheelchairs. While it would be brilliant to have nursing staff around who are able to administer Midazolam, should his seizures run out of control, I really want him to have fun while away from us and I am not sure how much fun would be had there. It does not sound as though he would be making friends there particularly, although I am sure he would flirt with the staff. I am anxious that if the other residents, as 15 live there permanently and they have two respite beds, are more unwell than Joshua is, that he might be a risk to them when he is charging about, being boisterous.
So in order to do our own assessment, my husband and I are going to look around later today, while Joshua is in daycare. I feel that we will know instantly if it is right for him, I certainly have had a gut feel for these things in the past. In fact I had suggested that we visit them, before they spent time assessing Joshua, as they may have wasted their Sunday afternoon, but they insisted on working this way. So we will go this afternoon with an open mind and make a judgement, and see what we think.
I can still vividly recall the first time that I looked around Joshua’s final Children’s respite provision which was out of our LA area. A smiley senior opened the door to me and asked ‘Can you walk like a penguin?’ and I laughed out loud, all tension had gone, and I said that I thought that I could as I squeezed past the wet paint in the doorway. I made up my mind there and then that this was a fun place, so then I just needed to be convinced that it was also a safe place for him to stay. My priorities since he first started school have not altered, he needs to be ‘safe and happy’ and I always have that in mind when looking around any provision , be it daycare or respite. That day I called my social worker from their car park and told him that I would not be looking around any more places as I had found the perfect place for Joshua. He suggested that I kept my appointment to look around another provision, but I argued that I would be wasting everyone’s time as I had already found what I was looking for. He knew that I was stubborn and that he would be wasting his time trying to dissuade me, so instead he began to complete the necessary paperwork to get him started there. My gut feel was spot on and he had many happy years with them, until sadly he had to move onto adult provision when he turned 18. They kindly stretched that a little while we began transition to the new place that we found and then he finished his time there with a beautiful leaving party, which showed us just how loved there he was.
So it would be brilliant to find such a good fit right in our home town, but I am not sure that this provision will have that same instant appeal. But we will go later today with open minds and alert eyes and ears, and see if it is somewhere that we can envisage Joshua spending time without us. It feels like a big responsibility to get it right for him; but we have shown before that we can make the right choices and if we have made the wrong choices, as with his first special school, we have the courage and determination to make a change for him too.