Absence Makes the Heart Grow Fonder

The purpose of respite, as far as I am concerned, is to give the parents a break from their child for a short time but also for the young person to gain some independence from their parents. It is not natural – I really hate the word ‘normal’! -for an 18.5 year old to spend as much of his time with his parents as Joshua does with us. In an ideal world, he would be out with his friends, or have a part time job, not relying upon us to entertain him and to fill his school holidays. But we do not live in an ideal world, so we have to create a situation where we have some freedom from each other.

I delivered Joshua to his respite place at lunchtime yesterday, and he was happy to go there and , once inside, he was confident in his surroundings.  I helped him through the garden gate and told him to knock on the door, while I went back to the car for his wheelchair, but he stood in the garden looking from me to the door, uncertain about what to do. Luckily he was spotted from inside and his carer came out to greet him, then he happily walked indoors. He sat on the leather settee and began waving at me, indicating that I was dismissed, no longer required. I stayed a while longer, to report on the events and changes from over the summer, then left them to it, walking away with a spring in my step, knowing that I had plans between then and Monday morning when I will collect him.

It was not always so easy to walk away :I used to worry a lot about him when he was out of my sight and I found not knowing about what he was doing 24 hours a day, difficult to adjust to. I have heard other parents say that they felt guilty about accepting respite, but I have never felt that way. I know that the short break is as good and necessary for Joshua, as it is for us. We all need some space from each other to top up our batteries and to appreciate what we have at home better, as absence does make the heart grow fonder. It is all about finding the staff that you trust to do a great job of caring for your son , in an environment where you know that he will be safe, comfortable and happy. We have been very fortunate with the provision that we have accessed and the fact that Joshua has settled in so well at his latest placement.

I know need to find somewhere that I am equally happy with for daycare, which we will need from next summer when Joshua leaves school. I have set myself a deadline of this Autumn term to visit all of the local options ,so that I can make a selection by Christmas, which would give Joshua’s social worker six months then to complete the necessary paperwork and make it happen. That sounds achievable now, but we all know how quickly the weeks speed by, so I need to crack on if I am adhere to my own timetable.

Out of sight but not out of Mind

I wrote yesterday that Joshua would be aware that he was going to respite, as he is just so much more aware of his surroundings than he once was. He was very quiet all morning and more serious than normal, as though he was absorbing the event and his reaction to it. He kept seeking me out, as I was busy preparing, and giving me giant bear hugs and insisting on attention. He was silent most of the hour+ journey and his highlight was finding an apple in the car, which he passed to me and we ate it together – I really love his re-found love of  a crunchy apple.

My husband and I jumped out of the car when we arrived and began to unpack it – his wheelchair and bags – but he made no attempt to get out as he would usually. His keyworker came out to greet him and he gave her a huge grin and walked in with her. He whizzed down the corridor to the lounge to see who was there and I followed him. He knew we were leaving him, he pointed at all of the staff and gave me several more bear hugs. I gave them an update and we discussed his recent seizure pattern, then he went to his bedroom with his key worker to drop off his bag, not giving me a backward glance, so we walked towards the exit. My husband followed him to his room to kiss him goodbye and of course I followed, to find Joshua sitting on his bed in his freshly painted blue bedroom. As I walked away I blew him a kiss and he held his hand up to his mouth to imitate me, I have never seen him do that before.

We were talking to his key-worker at the entrance , sharing holiday tales, when Joshua heard my voice and came running towards me, holding on tight.He watched as we left, standing right by the glass door, flashing his bare tummy at us. He has never watched us leave before, so I guess this is the downside of his increased awareness. Joshua made it very clear that he would rather have come with us and that made me sad of course and very difficult to leave.

I know that he will have fun and enjoy the fuss that they make of him this weekend and Joshua has never been a boy to pine. I know that he loves me but I also know that he lives for the moment, and it will be out of sight and out of mind for him, but I cannot get that sad image out of my mind.

I called last night after 9pm, as I always do before the staff shift change. I was hoping for a cheery story to replace that image but unfortunately : he had refused to eat any tea – which is unheard of for my new greedy son with strong teeth -,  he had taken himself to bed for a half hour nap before tea and he had tumbled in the corridor and landed on his knees. I was told that he had caught his boot on the radiator and that, even though there were three members of staff present, none  had been in time to catch or save him. She told me that he was stunned and did not move for some time and that his poor knobbily knees will bruise. None of these stories helped me to feel better about the start of his respite weekend sadly. I have always been comfortable that we all enjoyed our time apart, but so far it feels more one-sided. I am sure that he will settle in and enjoy it more today and I need to resist the temptation to call back during the day, but to stick to my 9pm routine.