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.
Marj,
Sibling carer, U.K.
You might also like to read guest post by Kristian, entitled Uncle Martin, or my thoughts on the uniqueness of every individual who has Downs syndrome in Not All Like Her You Know.
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You might also like to read guest post by Kristian, entitled Uncle Martin, or my thoughts on the uniqueness of every individual who has Downs syndrome in Not All Like Her You Know.
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