Story
1 - The Accident
This short background comes from an interview which I recorded
with Barry and his mother, Margaret, in October 1998. It formed
part of a conference presentation where Margaret and Barry told
their story to a group of Occupational Therapists. It is significant
because this was the first time that Barry came out in public
and told his story. It is included here to give a flavour of their
voices and to provide a context for the story about the work that
Barry and I did, which forms the body of the thesis. It is intended
that this background information will tell the reader just how
Barry’s need for occupation has arisen. His need was not
a simple product of the head injury, but came about also because
of where he was in his life when he had the injury and also what
has happened to him in the years since.
The cast referred to here includes Barry; his mother, Margaret;
his sister, Brenda; and David, the principal of the polytechnic
at the time of this story. The words in italics here are direct
quotes from the video made of this presentation, with the permission
of Barry and Margaret.
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In December 1991 Barry had just finished school, he was 18 years
old and he lived in a small rural community
It’s a hole.....a very small town about half an hour
inland from Ashford. The only thing we have is a flour mill
(Barry).
He comes from a well educated middle class family and Barry is
the oldest of 2 children, a genial, teasing brother to his sister
who was 5 years younger than him. Both of them were adopted, and
they also had a sibling who had died. Barry enjoyed music and
had the kind of personality which did not lend itself to getting
into a passionate affiliation with sports or other activities.
His strengths were his sense of humour and his laid back attitude
to life. He loved pottering around in the shed, putting things
together and tearing around on the farm bike. Knowing that he
would not naturally come forward in a group setting his mother
had ensured that he received speech and drama training throughout
his schooling.
Traumatic
brain injury
He had his accident on 27th December 1991.
I just remember what I’ve been told. I was at a friend’s
place and we were planning the big New Year’s event for
‘91. Everyone thought of going to KFC, when we only had
a KFC at Ashford. I thought I’d stay behind with my girlfriend
and I borrowed my mate’s motorbike. We went for a ride,
a rather short-lived ride. We went up a rather large bank and
sort of stayed right about there (Barry).
They went up a track, unfamiliar to Barry and little used by
anybody.
Barry was not found for several hours and no one knew where
he was. People don’t go up that road for a very good reason.
You go straight up a hill and you think that the road continues,
but it doesn’t, it stops in a 10 meter gulley. So, he
flew over the top and ended up in this 10m gulley. He wasn’t
found for about 2 hours (Margaret).
Neither of them were wearing helmets and when they went over
the top Barry had no idea of what was about to happen. It was
over in an instant, his girlfriend broke her nose and Barry sustained
a severe traumatic brain injury. She walked to the nearest farmhouse,
but she was totally shocked and could not remember where she had
come from, where Barry was still lying unconscious. Neighbours
a couple of miles away, who had no idea what had happened, remember
hearing his name being called for hours that evening as dusk was
setting in. It took several hours to find him, critical time in
the case of brain injury, when early intervention can reduce the
amount of long term damage.
Then the ambulance came and took him to hospital. He was
x-rayed at Ashford hospital and they just put a drip in and
sent him to Rathnew hospital. There was no mannitol given, the
diuretic that would reduce the swelling of the brain. In the
meantime his brain continue to swell. He was in a deep coma
for about 2-3 weeks (Margaret).
Rehabilitation
His family practically lived with him in the hospital, his sister
Brenda was still just a young girl and she used to curl up on
the end of this bed. He had to learn everything again - talking,
walking, eating, dressing, everything.
He used to wander and we used to find him in the neonatal
unit. We’d ask him what he was looking at and he would
say ‘the blobs’. We used to just steer him back
out. We used to have to find him all the time, he used to keep
getting lost. He used to wander and wander. He would go round
and round. He just couldn’t stop walking (Margaret).
When he was discharged after 4 months there was a further period
of intense rehabilitation, which lasted for 16 months.
He came down as an outpatient to Physiotherapy, Occupational
Therapy and Speech Therapy three times a week. The journey down
would take about 2 hours and it was exhausting for him. By the
time we hit the motorway on the way home he was asleep. On the
way down I would give him a series of chores. He had to say
two of the times tables and read 5 road signs and some number
plates before I would let him off (Margaret).
Yeah, there you were breaking the 2 second rule
(Barry).
Personal care
There was also some personal care which was available while he
was living at home.
We came home on 12 hours of attendant care. We were only
allowed to use them on Tuesday and Thursday and we weren’t
allowed to use them over the weekend. With one of the carers
Barry would go through the homework exercises which he had been
given by the therapists. For the other day he used to go up
to this man’s shed and potter around (Margaret).
I’m a grease monkey at heart. I love getting dirty
(Barry).
After 10 months our attendant care was cut to 6 hours and
by 1993 we had no help at all (Margaret).
Independent living
By the next year it looked as though the rehab process had run
its course. It seemed to be time for Barry to try his wings and
move away from home. During 1993 there were a couple of attempts
at living independently. They were disasters.
On July 4th, 1993, Independence day, Barry moved into St
Anne’s in Rathnew. He spent most of his time in bed and
he came home in November. After another 2-3 months at home he
went down to stay at the YMCA in Rathnew. It was just too difficult,
there was no attendant care. We used to send down food parcels,
which would not be opened. Food would be put in the freezer
for him with his name on it and it would not be touched. We
used to phone constantly and he was usually in bed (Margaret)
I was doing an ACCESS course, but I don’t remember
much about it. The brain kind of erases unhappy memories. I
used to go on huge missions, wanders.......(Barry).
All this was a severe shock to his system and he went home shattered
and depressed at the end of the year.
When we brought Barry home he was very ill. He was very
pale, very thin, unwell, unhappy. There was no support (Margaret).
Education and training
Months of hanging around at home had the whole family at the
end of their tether. Family dynamics became such that his sister
Brenda was sent to boarding school, which had not originally been
planned for her. There were no services that were geared for Barry
and the family was reaching breaking point.
We were desperate. We didn’t know what to do. Finally
I got in contact with Barry’s old art teacher, who was
now working at the polytechnic. We wrote to him and went to
see him. Ken put together a programme for Barry which he thought
he could do. So we went to the insurance corporation and asked
them for support and eventually after much toing and froing,
they eventually did support it. We got 10 hours a week, but
it was always after Polytechnic had finished. There was never
anyone else there and they were sent off into a little room
at the back. It wasn’t really what I wanted, but it was
all I could get. So he only ever really saw one person. That
finished at the end of ‘94. So then I went to the head
of the Polytechnic. He put together a programme, which Barry’s
neuropsychologist cautiously recommended. (Margaret)
David Brock was the principal of the college at that time and
he took a very special interest in Barry. A training course was
set up which included components from the foundation course for
the art students. Barry attended classes in ceramics, printing
and photography, but there was a feeling that he was being set
up to fail by being put among art students, who would have very
little time for him. This is exactly what happened, he managed
to do the work at his own pace, but he was very isolated. It was
at this point, at the beginning of 1995 when I had just arrived
in Rathnew, that I was asked to come along and do my first assessment
of Barry, to help tailor a course to his needs.
Disability insurance
It was this year also that the fight for funding really started
in earnest.
In September 1995 I made the first approach to the insurance
corporation to see if he could be assessed under the new regulations.
I was misinformed by a well meaning therapist and withdrew my
application, believing that Barry was not eligible. I finally
put in the application in December 1995 and it took a year for
the assessment process to be completed (Margaret).
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Summary
Barry came from a very normal, loving family. There was a huge
amount of energy put into the struggle to rehabilitate him and
given the extent of his brain injury these efforts were relatively
successful. However, once the rehabilitation phase was over there
was a complete impasse and nobody knew what to do with him.
The story indicates that the effort to find a direction for Barry
was unceasing, but he was still extremely unhappy during this
whole period. There were glimmers of hope and some of the things
that were done with him were excellent, but his story only really
gets started when adequate funding is finally provided.
Next page: Story 2 - the OT arrives
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