Looking forward

It will be Joshua’s first respite weekend in eight weeks this coming weekend, as he missed out on his February half term jaunt. I am hopeful that he will just slide back into it without any trauma or fuss, even though his assigned keyworker will be away on holiday. We have fun planned for his time away and they too are planning a trip away on a  local railway, which I am sure he will enjoy.

I think back to when respite was first mentioned to me, as Joshua joined his first special school when he was 8 and the Manager of the school residence pounced on us at Sports Day in June, when we were on a familarity visit, before Joshua had even joined the school. I was horrified and fobbed her off with, ‘I will think about it’, but having no intention of considering it. He started that school in September and again she invited me to look around the residence and eventually I relented, mainly to shut her up! I liked what I saw and after October half term I gave in, and Joshua started to spend Monday nights in the residence. It was on the same site as the school so he was there from 3.30 on Monday night and could fall out of bed into school on the Tuesday morning. My husband and I got used to being without him on Monday nights and would eat out, just because we could.

It worked well and he clearly loved it, he was excited to be in the building and flirted with the staff. So then we were upgraded to one weekend in four as well as our Monday nights. That felt like a huge step and we worried endlessly about what Joshua thought about being ‘sent away’. My husband worried that he would think that he was never coming back, but that he had gone to a Children’s  Home and other parents asked me if I felt guilty. But I never felt guilt or that anxiety, because I knew Joshua loved it and that he was having fun, that was all that mattered.

We changed special schools two years later, and had to give up that brilliant residence, which was the only regret that I had about leaving the school. We gained a school nurse in his current school but at the expense of respite provision. Then we began the long battle with our Social worker to find an alternative provision and to introduce them to Joshua, and vice versa.  He found us a great solution when Joshua was 11 years old and he enjoyed monthly weekend visits for another three years, until it closed to children and became a facility for adult care and so once, again we had no respite this time last year. I was told that there was no suitable facility for Joshua in our Local athority area so I insisted that they look at surrounding areas, up to an hour away.

Eventually after six months of pushing, and going without, an alternative respite provision was suggested, over an hour’s drive away. I visited to look around and imemdiately loved it and so we began a staged introduction, with Joshua staying for his first full weekend at the end of last year. Joshua has settled in as well as anyone could expect and he is clearly happy there, which is the only thing that matters. So this is our world today, well until something else changes I guess.

It has not been an easy journey, our relationship with respite, but I have fought to continue his weekends away, not solely because I welcome the break, to sleep when I wish, but because I know it is an important part of Joshua’s development: it is not natural for a 15 year old to spend as much time with is parents as Joshua does, he needs to spread his wings and have somewhere that he goes that is ‘his place’ where he knows he is safe and can be himself. He will make new friends there, he will try new activities with them and hopefully, he will pick up new independence life skills too. He knows that he will be coming back to us and he knows that we have not sent him away because we do not love him anymore, quite the opposite in fact. This will only be a solution for another three years, as he will not be able to go there once he is 18, but for now, we can all three of us enjoy the short break from each other.

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