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.

Birthday Plans

I have a big birthday coming up at the end of September and yesterday, we began to plan some celebrations which was very exciting as respite gives me not only time to catch up on sleep, but also it gives me thinking space. On my actual birthday I would like to share a meal with a group of friends to celebrate in style. We have identified two local alternative venues that have private dining rooms, so that we feel as though we have the place to ourselves. I enjoyed writing my list of friends to invite and I started to ponder Joshua’s inclusion in the midweek celebration?

I decided that I would like him to join us, as he is a large part of my 50 years on this earth : if he can stay awake, he would love a party, with all the noise and laughter, he is unlikely to eat anything. He has been known to play up to a crowd, although he may not appreciate his Mum being distracted. So Joshua, has made it onto the guest list and the plan is underway…

I have written before about how Joshua’s unpredicatbility has made me less inclined to make future plans, but something like  a big birthday, does require planning and although it is still 3 months away, I have to admit to getting excited yesterday as we discussed options. I have requested several  small celebrations with different groups of family and friends, rather than one party with everyone together. That way the celebrations go on for longer and I am able to focus more on different groups more fully. I have also requested, no surprise parties where I walk into a dark room and people leap out from the darkness shouting ‘surprise!’, I must be too much of a control freak to appreciate that but also, I enjoy the anticipation too much to miss out on it.

Having a September birthday means that I was one of the oldest in my year at school, and so I will mark one of the first of a year of golden anniversaries. Birthdays are a time for reflection as well as celebration, so as it approaches, you can expect some reflective blogs looking backwards across my life. As I left home in 1985, to go to university, I had no idea what direction my life would take : what career I would pursue,where I would live, who I would marry and biggest of all, that I would have Joshua in my life. I am delighted to report that as I approach my half-century, I am happy with my lot and I feel most fortunate. Nobody knows what the future brings and I have adjusted and have now learnt to accept unpredictability in my life and to go more with the flow. In addition to looking back, I will also be looking forward to my next 50 years and to what more might be in store.