The shaving, the boils, the nails. Minimize
header

So we loaded up Jilly with all Luke's books, clothes, CDs, music, ukulele, shoes, bedlinen, cushions, photos (of us all) and we all headed off to Brighton last Monday.

Here's Luke posing by the front door before we headed off.

Lukey standing by the front door

A while later we arrived at Luke's new residence and were met at the door by Mike, who is his keyworker. We then headed up stairs to see his room and lugged everything in. It is a lot smaller than his room at home and with all 5 of us it was definitely crowded! Apart from us there was a wardrobe, a chest of drawers, a bedside table and a desk. He also has his own bathroom or wetroom, to be more precise. He shares the house with 7 other students and a variety of support staff including 2 who are on night duty. Apart from the other student's bedrooms there is a sitting room with a telly, a computer room, a laundry room, a kitchen/dining room and soon there will be a chill out room (by that I don't mean a walk in freezer!). Sorry - bit of a dad joke there.

Luke wasn't staying on the Monday night as he wasn't starting officially until the Tuesday. So that evening we headed off for something to eat and then Christian and Lily caught the train back to London and the 3 of us checked into our hotel for the evening. It was on the sea front which sounded lovely but somehow sleep seemed to evade us. So many things going through our busy little heads. The following day we all had to check in at the college (Luke's house is not on campus). Anne and I had a whole series of interviews with various members of staff and a tour of the college. We were fed at Scrummies, the college restaurant which would normally be run with the students but they hadn't started yet. 

Then the bit we were all dreading, we had to head back to the house and drop Luke off and then leave him there. We discovered that the wetroom floor had been badly installed and consequently left a puddle round the sink. The room seemed to have shrunk overnight. There were people shouting at the bus stop under his window. We decided that we should leave and Luke took us downstairs to say goodbye. We drove home with hardly a word exchanged, each deep in thought.

The next few days were very difficult. Terse emails were sent and then it all started to shift. Not as a result of the emails although they were probably necessary for us, to confront and identify our fears. All the things that we hadn't mentioned, aspects of Luke's care. The shaving, the boils, the nails. Transferring care is so difficult. I know that I'm not always a dutiful carer and often look at Luke's nails in amazement and think I must cut them. However there is a lot that you do instinctively and when you have to try and identify and brief someone else to do that in your place it is really difficult. Yet in order for the new carer to have any idea about what needs to happen you have to be as detailed as possible. Also you realise that this is not an instant process, to transfer this information will take time and care and love. When you think of the amount of work the staff need to put in to begin to get to know the students in their care. To recognise them as individuals, to get to know their signs, their ways of communicating. Of course it is all documented, or should be, in the care plan but that it not ultimately how we operate. Imagine starting a relationship with someone and them providing you with a manual. We don't work that way.

We have seperate feedback from the college and we know that he had a bad time on Friday morning and was feeling homesick. His support worker took him off for a while and they chatted. Luke was able to tell us about this later on. He's homesick and we're Lukesick it would seem! He's been doing some recording in the Studio already and we've been able to listen to that. We have spoken on the phone, we are thinking about getting him something slightly more sophisticated. At the moment he has a vintage Samsung. We decided at the beginning not to buy a load of stuff like computers, ipads, DVD Players etc and wait and see how he settles in an see where the gaps are. The only thing we knew he wouldn't be able to live without was his music. So we did buy a CD player/radio.

We started to receive emails from Mike telling us about the sort of day Luke had had. He had his DVD Treats at the weekend and managed to have the whole sitting room to himself. There's another thing, a grounding ritual that has become increasingly important to Luke over the years. He likes to watch a movie on Saturday and Sunday mornings. They have taken that on and facilitated it for him. It's so important for Luke at this moment. Maybe in a few months or so he might not need them. He might have other things in mind. Certainly the last few days he has been up to all sorts, they went to Sky High trampolining on Saturday, Knockhatch Adventure Park on Sunday, an open mic session at the pub on Monday...

Luke on a tire swing

This Sunday we're going down to see him. The longest time we have ever been apart. A new part of our lives begins.


Nick Radclyffe writing about Life at EalingHELP on 14 September 2016

Choose a blog to read
Categories Minimize
More Blogs Minimize
A selection of blogs from around the world by parents of children with various disabilities. 

Find out more here...