Victoria Lewin author of books for young carers such as her daughter, and project lead of charity Caitlin's Wish contacted me recently about some training work she is doing.
As we got chatting the rather heart-breaking story of Victoria's uncle Geoff, who has Down's syndrome emerged. His story is somewhat typical and although it has a happy ending, the realisation that attitudes, support and early intervention have changed greatly since the 60s is emotional to read.
My Brother Geoff
I was 11 when my little brother was born in 1961. My mum was 41 and he was her third child (both now known risk factors but we didn’t know that then). His father was diagnosed with leukaemia shortly before he was born and died when he was a few months old. So it was just me, Mum and Geoff (my older brother had left home).
When Geoff was 6 months old mum took him to the doctor’s because she was concerned he wasn’t doing the things a baby that age should be doing. The doctor said “Well, of course these babies are always slower”. She had to ask what he meant because no-one had ever told her there was anything wrong with her baby. Then we just had to get on with it. In those days it was called Mongolism and these days it makes me very angry when I hear youngsters using that word as an insult. They don’t have a clue.
I can’t remember what age he was when he stopped wearing nappies but I know it was a lot later than other children. He wouldn’t chew and swallow food, he would only eat pureed baby food. He used to take toast, chew it up and then spit it out and throw it around the room. That was fun! Amazing where it ended up!
He never learnt to talk. He understood (and still does) every word you say – you can tell because if you’re talking about his mischief of throwing things around the room, like cushions, he’ll pick one up and throw it. Or if you’re telling someone how he likes to pick up a sugar bowl and tip it upside down he’ll go into the kitchen and look for one to upend! But we could never get him to talk.
When he was small he used to bang his head on the wall. We had to run as soon as we saw him heading towards a wall and try to get our hand between his head and the wall so he didn’t hurt himself too much. He did it for years and we never ever found out why he used to do it, but then he just stopped.
He did start to eat soft food properly but went off eating when plaque on his teeth became a real problem because it was digging into his gums when he chewed, we later found out. Mum did brush his teeth as best she could – it was really hard to get him to open his mouth long enough to achieve anything – but she always persevered. For many years he went to the dental hospital every two years for a dental check up (he wouldn’t let a dentist anywhere near him, he had to be sedated for them to look in his mouth) and one time they didn’t send for him. Mum got onto them but by the time they did send for him a year or so later he’d stopped eating. They did work out why, (the plaque) and deal with it but he would never go back to eating properly, everything has always had to be liquidised since then.
He did go to school but he was left in the nursery class until he was a teenager because he would sit in the corner and wouldn’t join in with what they were doing, so they just left him there. Eventually he was transferred to a different school where they did get him to do things like put on his own coat and shoes, and they started trying to teach him sign language, but he wasn’t there long enough to have much effect before he was over school age and back home again.
At home he didn’t play with toys, he had just two small soft toys that he’d always had and they had to be wherever in the house he was, not played with but just there, but he loved getting all the old Christmas cards or birthday cards and just spreading them out all over the floor – heaven help you if you moved one by a millimetre, he was not impressed! He’d let out a shout and go and put it back into place. He also liked to look at the pictures in mail order catalogues, sometimes tearing out pages to put with his cards. He doesn’t do that any more, but he still has two small soft toys on the arm of his chair and every so often he will stand up, cross the room, and move a lamp or coaster or something just the tiniest bit and then sit down again. Everything has to be in the right place.
After some years of just being at home with mum all day every day he was given a place at a day centre a couple of days a week and at first he just sat away from everyone else there as well, but over the years attitudes have changed, staff have changed and instead of just asking him to join in and leaving him alone when he didn’t, they started actively getting hold of his hands and working more at getting him to do activities.
Over the years he occasionally went into respite care for a few days at a time to give her a break but by the late 1990’s mum was getting too old to cope with him at home (she was in her late 70’s) and when she took ill he went into respite care and then into permanent care. She died in 2001 and he has been in care ever since.
He now lives in a house with a lady who has Down’s but she certainly can talk! They have 24-hour care cover from a very dedicated and lovely team of people. He goes to a day centre 3 days/week and the day centre staff and the carers are working together on trying to get him to use sign language. The problem is that he has learnt very well how to get exactly what he wants without it, so he’ll make a half-hearted attempt at the sign for “drink” but that’s about it. They also do some light therapy and get things like colour changing lamps for his home, and they do a kind of behaviour therapy where they sit in front of him and mimic his movements, then eventually he starts to mimic them. He gets periods of one-to-one attention every day now and it’s much better for him. They help him to choose his own clothes every morning and when he’s not at the day centre he sometimes goes to the pub for lunch with the carers and sometimes with carers and clients from another house run by the same organisation (they’ve found a couple of pubs that will liquidise food for him or they just get him soup and give him something more substantial at home).
Most Mondays a carer takes him to meet up with a lady he made friends with when he first went into care. They meet at the bowling alley but they really aren’t bothered with bowling. They sit together and she snuggles up to him. They sit close and she kisses his cheek, then after an hour or so their respective carers take them back home. It’s clear they like each other and it’s a bit of “normality”. Sometimes the carers don’t bother with the bowling alley, they just meet up in a pub – it’s all the same to Geoff and his lady friend!
Once a year one of the male carers takes him for a week’s holiday, usually to a log cabin near a lake in North Wales, and Geoff loves that. He’s also been on a few weekends away with clients and carers from other houses – once there were so many of them they took over a B&B in Blackpool – and Geoff loves that too. He likes to be in an amusement arcade just watching all the flashing coloured lights on the machines. Mum used to take him to the seaside for a week every year and they used to just walk around the arcades because it’s what he likes. She only stopped doing it when she physically couldn’t manage it any more.
It’s possible that if he’d had the kind of help that’s automatically given to babies with Down’s syndrome these days maybe he would have talked. He can make noises, there’s nothing wrong with his vocal chords, he just never wanted to say actual words so he didn’t.
These days people with Down’s syndrome get the support to enable them to live quite normal lives – they get jobs etc. but in the 1960’s it was a very different world. Having said that, he is now benefitting from the level of support that’s available now and he has a happy life. When I see him interacting with the carers it’s clear that there is true affection there on both sides, when we visit him he chuckles at things (he’s still ticklish!) and is quite happy to wave goodbye to us, that’s how I know he’s happy – otherwise he would try to leave with us and he never has.