Last night my husband and I went for a night out with some of his work colleagues for a retirement party. We enjoyed delicious food, good company and a taxi home, to facilitate drinking on a ‘school night’! it was the first night out that we have had as a couple, without Joshua, since the middle of February, when his Granny babysat so that we could go to the cinema.So that is 4 months and so I started wondering if that is typical for parents of children with special needs?
When Joshua went to his first Special School, they had a residence attached to the school. When we went to look around the school with Joshua, once we knew he would be moving there, the manager of the Residence approached us to ask when she could have him to stay. My initial reaction was one of shock and I resisted her, explaining that Joshua would have enough upheaval changing schools and that I needed time to get used to the idea. He joined the school in September and by October half term she wore me down and he had his first overnight stay. It was a massive thing and I did not suffer the guilt that some mums have spoken about, I was just anxious that he would be unhappy and not understand why we had sent hm away. But it was the best move we ever made, as he clearly loved it: he enjoyed the interaction with his peers and I could see that he was happy there when I picked him up.They never reported the poor sleeping habits that he developed at home, he appeared to sleep through the night and be able to settle himself to sleep, without a cuddle.
At first we began eating out every Monday night when he was in Residence, until we exhausted the local dining options, which were limited as so many restaurants close on Mondays to recover from their busy weekends. So we changed , briefly, to a yoga class together and eventually, we would simply relax and get a takeaway at home, as the novelty value of evening freedom began to wear off. We changed to his current school in 2011 ,after a prolonged tribunal, but as a consequence we lost access to the residence.
After a delay, our social worker was able to organise 2 nights a month at a private facility, which over time, we grew to love and trust. once again, I gained confidence as I got to know the kind staff and could see that Joshua was happy there, when I collected him on Sunday afternoons. We thought that we had a stable arrangement but last Autumn we received a letter, out of the blue, to explain that facility would be closing at the end of February 2015. I was immediately in touch with our social worker to ask what was being offered in its place and it was being discussed.
No alternative respite provision has been found as yet, so we have been without Joshua’s overnight short breaks for five months now. Our local authority does not have any provision within its boundary, as we are not allowed access to the ex-school residence having left that school. Our social worker is in the process, with a lot of nagging, of seeking out alternative short breaks within an hour’s drive of home in another council’s area, but no joy so far.
Having experienced the benefits, for both Joshua and us, of short overnight breaks, we are determined to replace this facility that we have lost. Last night our baby-sitter did a great job of taking care of Joshua while we went out, but when we got back at midnight, we were back on duty. Joshua is going away overnight with school at the end of June, and this will be the first night that we have been without the responsibility of taking care of Joshua since 10 January, so six months ago. Bring it on!