A Mother's Story: Early days of the Centre seen throught the eyes of a mother, Joan.
This is Joan sharing some experiences of our family (below) that we've had over the
past forty years with The Spastic Centre and our son David, who started at
The Centre when he was three and a half years of age, and before that as an
out patient.
David
was born two months prematurely and was a very tiny baby. He was in a humidicrib
for six weeks. We knew a little later that there was something wrong; things
weren't happening that should have been. After many visits to doctors with
not very much satisfaction, we were advised to contact The Spastic Centre.
This advice came from a lady to whom we were introduced (we lived in Newcastle)
and her name was Gwenyth. Gwenyth had a cerebral palsied son of about fourteen
at that time and had quite a lot of contact with The Spastic Centre, even
though she had her son at home for lengthy periods. He was not a very robust
boy and consequently he was at home more than she would have liked him to
be. The rest of the time he spent at McLeod House.
Gwenyth spoke to a group of parents at the local primary school where we
were living in Newcastle. She spoke about the Spastic Centre and the wonderful
work that it was doing for many cerebral palsied people. At this stage David
was about nine months old and we had not had very much satisfaction from the
medical profession regarding his problem. We visited Gwenyth. She was a wonderful
lady - particularly helpful to us - and suggested we visit The Spastic Centre
when we came to Sydney. This we did. Of course we were very young parents
and we didn't know what to expect. There were two doctors who had a very good
look at David and assessed him, and explained to us that he definitely had
cerebral palsy even though other doctors had said that he did not. Gwenyth
thought that David did, and The Spastic Centre confirmed this. The doctors
said that he would be heavily disabled, physically, but that David appeared
to be quite bright and that they could educate him. This news was absolutely
wonderful to us as we were completely at a loss as to what to do. Once we
found that it was not hopeless, it was the beginning of knowing that we would
probably cope - even though we knew that the road ahead would not be an easy
one.
So from when David was ten months old, we came down from Newcastle every
three months for outpatient treatment. At three and a half years of age (having
moved to Sydney at this stage) David started school. He came in each day to
Mosman (when The Spastic Centre was situated there) and went into a classroom
where he was very happy. He had wonderful interaction with the other children
and very good teachers from the Education Department. It was a great comfort
to us to know that something was being done for him. There he was receiving
education, he was receiving physiotherapy, he had occupational therapy and
speech therapy. We look back now and realise how fortunate we were to have
David starting at The Centre at such an early age and receiving all these
benefits.
There were doctors on the staff who were able to help with medical problems.
There were so many ways in which he was being helped, just as we were, as
parents. That was in 1964. At that stage the only help The Spastic Centre
was receiving from the Government was that the Education Department was within
the school and supplying teachers. Consequently, the Department was paying
the teachers. All other funding had to be voluntarily given and there was
a tremendous amount of fund raising that had to go on for The Spastic Centre
to exist and for this treatment to continue. So, the parents were heavily
involved and there was a lot to do. The mothers were asked to go one day each
week to help the children. They helped to toilet and feed them and did various
other jobs at the Centre that needed doing - such as cleaning or whatever
needed doing at the time. When we mothers went over each week we really enjoyed
being together and a tremendous friendship grew between us. It was great therapy
over time. We all had a similar problem and no one understands more than a
person who has the same problem. Therefore we shared all our joys, sorrows
and concerns. We helped one another and it was a wonderful time for us all.
Also, the fathers were asked to go and help one day each month - either a
Saturday or a Sunday of a special weekend. There was a lot of maintenance
work that needed doing, such as painting, building, mending - all sorts of
work. The fathers were from all different walks of life, so it was a great
experience for them and they learnt a lot. It was a very important time for
them to be with other fathers; just as it was for the mothers.
The fathers built some of the buildings of The Spastic Centre, particularly
back in the very early days. McLeod House was built by fathers and helped
by mothers who supplied all the refreshments and encouragement. Later on they
built Centre Industries, the Workshop - the Factory - that Mr McLeod had first
envisaged. It was tremendous for them to be doing that sort of thing and they
were wonderfully strong buildings. At the head of these fathers was a man
called Jack. He was a builder, and therefore had the knowledge of jobs needing
to be done and the right way to do them. It was very important for the parents
to be able to get together and feel that they had helped to achieve these
objectives within The Centre which were going to help our children.
Back to the mothers duty days - there was always cooking and work to be done.
At that stage the children were provided with a hot lunch; each day the mothers
did all the cooking for this. Some worked in the kitchen and some helped with
the children and with other duties in the area of toileting and cleaning.
It was a great opportunity to be there each week to meet the staff, the therapists,
teachers, and doctors and to be able to discuss any problems. This was also
a great help with the children as a lot of them had speech difficulties. To
be able to communicate with them was much easier for the mothers, having been
at the Centre and having met the teachers and staff. Communication could therefore
take place between mothers and the children about what they were doing each
week. This was of great benefit and I think most of the children really enjoyed
having their mothers coming in on the bus with them. Most of the mothers would
do this. We would go one day a week on the bus with our children. It was quite
a highlight, for our little ones especially, to have mum on the bus. They
looked forward to that and so did the mums.
There were some mothers who were not able to go - perhaps they were working
- but they could pay another mother to do their day. There were some mothers
who were happy with this arrangement. That helped to swell the numbers of
mothers and most mothers were involved in some way.
There was also the Fete which took place once a year at Mosman. It was a
huge affair and one that everyone looked forward to each year. During the
year the mothers would have monthly cake days. We would be allotted to a certain
stall. One month it would be the cake day for a particular stall and the next
month it would be for another stall. We used to all bring our cakes in and
have a lot of fun selling and buying cakes. The money that we raised each
month would go towards our stall at the fete. There were raffles going on
all the time and there were all sorts of ways in which we could make some
money for The Centre.
When the fete day came, it was an incredible experience. There would be people
waiting at 7am with their trolleys, ready to fill them up with groceries and
whatever else they could find. The groceries were collected from the local
schools and there were tins and tins of food, all taking up one of the big
classrooms. People would be able to buy very cheap tinned food and other groceries
to stock up their pantry for some months to come.
There were all sorts of stalls. There was one group of greengrocers who always
had a stall at the fete and they would donate all the goods to sell. There
was also a chocolate wheel which was donated, with all the prizes, by some
firm. That raised a lot of money and there were lots and lots of kind people
who had donated goods for the fete. A lot of money was raised at these fetes
and they were great fun. Everyone went home that night, very tired but feeling
that it was well worthwhile. The Spastic Centre fetes seemed to draw crowds
from a large part of Sydney and had a great reputation in those days.
Then there were the Country Conventions with which the mothers were involved.
There were Spastic Centre Councils working very hard for The Centre in many
parts of New South Wales, and they still work hard to this day raising funds
for the Centre. For many years there was an Annual Country Council Convention
when members of those councils came to Sydney to do a lot of learning and
to hear of news in the city to do with The Spastic Centre. They brought in
their cheques from donations and work that they had done to raise money for
The Centre. These were important occasions. The people who came from those
country towns needed to be fed and the mothers used to provide meals for them
for two or three days. That was another great way for mothers to get together
and have fun. It was important to meet with people who were working hard for
The Centre in those country towns. This was an annual event which was very
well attended and which was a big thing in the life of The Spastic Centre.
It was in 1972 at Allambie Heights that the WC Allen Treatment and Training
Unit was opened which incorporated a public school for cerebral palsied children.
This accommodated the children who lived closest to that area and so David
and others were relocated from Mosman. The mothers' and fathers' workdays
continued there for some time until the Department of Education provided aides
to perform the duties that the mothers had previously done. Some mothers welcomed
this change, but others were sorry to be losing this weekly contact which
was very beneficial for them and their children. Attempts were made of course
to stay in contact with each other, but this was not easy with the decentralisation
of the Centre by that stage. However the Parents and Friends Association (PFA)
continued and is still in existence. This association began many years ago
with a group of parents of children who had finished school and were attending
Centre Industries. It was at that stage, mainly a fund raising organisation
catering for the needs of adult cerebral palsied people. It also assisted
in supporting hostel accommodation for them as their parents grew older and
were not able to care for them as easily as previously.
The PFA now aims not only to support our young people with their accommodation
needs but also to act as a lobby group where help and support is needed from
The Centre and of course from Government. This group is comprised mainly of
parents in the older age bracket, but it is encouraging to know that a few
younger parents are now beginning to show an interest.
I have mentioned many experiences, which have been a large part of the lives
of our family over many years. These years would have been very different
had Audrey McLeod not been living in Sydney at that time and had she and her
husband Neil not been the people that they were. Their vision, drive, tenacity,
compassion and commitment made it possible for David and hundreds, no thousands,
of cerebral palsied people to receive the treatment and care which they needed
and still need to lead a fulfilling life despite the multiplicity of their
problems. We, along with many parents and many families will be forever grateful
for such wonderful people.
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