Millennium Here We Come
It’s a rather mixed bag of a post today. And in the main, I’m afraid, rather gloomy.
Had a very tearful start to the day. Steven was watching another of his old school videos. This one was from Christmas 1999 and was an hour long sprint through 1000 years, called “Millennium Here We Come”. It was his penultimate year in primary school and his class did the moon landings. What makes it so upsetting to watch is the knowledge of what has happened to those young, eager, innocent faces since they “transitioned” into adult services. The outcome has been, by and large, pretty horrendous. Most of Steven’s year group are living away from their homes and the future looks very bleak. I suppose there is an added poignancy with it being the advent of a new millennium – hindsight tells us that they would have been much better off staying in the old one. I can’t bear to watch the videos and delegate the job to the support worker. Steven wanted me to watch it with him this morning but I had the excuse that I had to go out and get his cherry bakewells for his mid morning snack. But I couldn’t escape the images and thoughts in my head and sniffled all the way around Tescos.
Yesterday, as we have done for the past 14 years, we went to the Mencap pool. Steven’s longest serving support worker came too. When we got back, he said that in all the time (7 years) he’s been going there, he has only ever seen people brought there by their families. It is true. I don’t think I’ve ever seen anyone there who lives in a residential home. It is very odd. The respite home that Steven went to before he was packed off to the positive behaviour unit is just around the corner – five minutes walk at most. The home is busy at the weekends and it seems to me that the pool would be a great place to bring people to. I suppose it’s because of the same issue I wrote about last week – not enough staff employed to facilitate normal life experiences. And a lack of imagination and will.
On the #LBBill Facebook group there has been a discussion about a section from the LD Census. Read this statement and weep –
“For 2,545 patients (79 per cent), the main treatment reason for being in inpatient care on census day was either due to a continuing behavioural treatment programme”
It’s sickening isn’t it. I’m not even sure that the two words “behavioural” and “treatment” should go together. Is it ignorance? Is it arrogance? Is it a complete con? Whatever it is, it sails pass the most important point that any form of behavioural intervention is best done in the person’s own home. When Steven was a teenager we had a fantastic learning disability nurse, David Smith, travel across London from St Georges to support Steven. It took a whole year for Steven to learn to say “I’ve finished” rather than hurl whatever he is doing across the room when he’s had enough of it. It was hard work but fun, thanks to the patience, professionalism and good humour of David. For the whole year in the unit, they didn’t get anywhere close to this level of engagement.
It’s not behavioural but another example of how long it takes for Steven to learn stuff. This morning, the postman delivered a parcel. Steven greeted him at the door with: “Hello man. What’s your name man?” That has taken 17 years. It used to be: “Hello man. You’re a man called….?”, which always threw the other person.
In Millennium Here We Come, Steven sang “Giant steps are what you take, walking on the moon”. Every step he takes is a giant step but it’s not a job for the behaviourists. It’s a job for himself and the people who love and are interested in him. And is most successfully achieved in his own home.
From → Social Care