Joshua first started having respite when he was at a special school which offered its pupils access to its residence, so he would have been about ten when he first stayed away from home overnight. We had many issues with the school, but always loved the staff and environment in their on-site residence. Joshua stayed over every Monday night at first, giving us freedom that we had never enjoyed on such a regular basis before, but it was then that we discovered how many restaurants close on a Monday night after a busy weekend so we even tried a yoga class together! He was then awarded one weekend in four : we would pack him off to school on a Friday morning and he would not return until Monday afternoon, after school. These weekends were wonderful as they gave us time to properly unwind and Joshua avoided the 45 minute commute every month.
Sadly, the benefits of monthly weekends of respite were not worth tolerating the school for and we made the difficult decision, with the support of our social worker, to seek a place at another special school in the area. Having looked around the three other special schools in our region, we rejected one which felt like a prison to us, one rejected us at it was already over capacity but the third seemed almost perfect. We loved the head and the school, but its only downside was that they did not offer any respite facilities like we had become accustomed to. Our social worker assured us that he could find separate respite provision, independent from school, so, with the support of him and our Children’s Epilepsy Nurse, we began the slow process of changing schools. As our selected school was in a different Local Authority area than where we lived and ‘technically’ they were also at capacity, we had to go to a Tribunal in order to win our much -desired place. After a traumatic process, and then a very brief Tribunal, Joshua was awarded a place at the new school in March 2011, when he was ten years old.
Our social worker then had the difficult task of finding us respite provision, which he managed to do and we began weaning Joshua into overnight stays at a smart old house about 50 minutes from home. Again he began with a weeknight but progressed back to monthly full weekends, once he had proved how settled and happy he was there. All was going well, when the provision announced that they were closing Children’s respite , to become an adult facility, and we had to begin the search for an alternative once again. There was nothing suitable within our region and so we began looking at our neighbouring LA areas and that was when I fell in love at first sight with a facility about an hour away from home. I looked around on my own one afternoon and the smiley lady who opened the door to me, greeted me with the question ‘ Can you walk like a penguin?’ and I laughed and replied that yes, I believed that I could! I loved the people instantly and the facility seemed too good to be true, just a short walk into the centre of one of our most beautiful heritage cities. I rang the social worker from the car park and told him that I was not looking at any other places, as I had found ‘the one’. Paperwork and familiarisation visits completed, Joshua began to go for monthly weekend stays and we were all very happy. We were so confident in their care that, for the first time ever, we began to take weekend trips away , in the UK at first where we could get home quickly if we needed to but then, bravely, we started to venture overseas for mini-breaks to Spain and Holland!
It worked beautifully and then they hit us with a bombshell : it was a children’s facility and so Joshua could no longer stay once he turned 18. That was a real blow as we had found the perfect provision but the search began once again for somewhere suitable for adult respite. Eventually we found somewhere that we liked, just 15 minutes away from home in a rural location, and once again, Joshua began familiarisation visits, first just for a couple of hours, then an evening meal and then one night to be built back up to our allocated of one weekend a month. Joshua was adaptable and he liked the staff and his ground floor room was ideal, apart from the lack of a downstairs bath, but they began the process of trying to acclimatise him to a shower, which he really hated.
We had got back in the habit of monthly weekends apart and we seemed all set for some stability at last… his last stay was in February 2020, but then, the pandemic hit and the facility closed down for lockdown. It eventually re-opened but at the time, we were shielding vulnerable Joshua, so I did not ask to return to respite until Summer 2021. By that time, a staffing crisis had hit social care ; due to the combined effects of Covid 19 and Brexit, the facility struggled to recruit new care staff and so they could not cover any respite for us. Its rural location, which appealed to us, is a real barrier to staff recruitment it now seems. Six months after I first asked to return, we are still being told that it is not possible due to insufficient staff, so it has now been exactly two years since we have received any respite.
This means that we as full time carers have not had any overnight break for 24 months and Joshua has not had any break from his parents for two years and he will now be out of the habit of staying away from home overnight, so when it eventually re-opens, we will need to build that up again slowly. We are lucky that he has shown how adaptable he is and so I am sure that he will soon slot back into overnight stays.
I have always regarded overnight respite as a positive thing for both us as parents and Joshua too, so I have never felt guilty about sending him away. We are much better carers once we have had a short break, we are better rested with undisturbed nights and we have time to fulfil some of the plans that we have for activities that we cannot manage with Joshua in tow, such as a long walk. Particularly now that Joshua has been with us 24/7 for so long, he too will benefit from respite as it makes him more rounded to mix with other people, both staff and other residents. I think he will appreciate his time at home so much more, if he has a short break away from it and us. So we would all be refreshed and energised by returning to regular respite. So please, bring it on!