BRINGING UP ANDREW

I am the 'Andrew Berry' who this article is about. It was a privilege to have such a wonderful mother and I am grateful for the opportunity to make this article available to a new generation of readers.

Much has changed in the 30 years since it was written, the use of 'spastic' as a noun was perfectly acceptable then. Much remains the same - I am sure that many parents of children with disabilities will recognise the same feelings of hope, sharing, uncertainty and frustration that it explores so clearly.

My Father wrote this introduction in 1982:

My dear wife Kathleen died peacefully on 11th October 1981, from bronchial pneumonia, just after my retirement. She had senile dementia, a very distressing illness; doctors at present have little knowledge of its cause or treatment.

Following Kathleen's death I felt it necessary to try and start life afresh and during a week's holiday in December 1981 in Tenerife, with my younger son Andrew, I brought an attractive ground floor apartment in Playa de Las Americas. As soon as our Bristol house has been sold I intend to live in Tenerife.

While clearing up our Bristol home I remembered that Kathleen had told me, about fourteen years ago, that she had written about bringing up our younger son Andrew, who is now thirty-one and a spastic. In spite of his handicap Andrew is a founder director of a successful computer company in Milton Keynes. He attended Enfield College of Technology (now Middlesex Polytechnic) and was awarded there in 1973 the degree of Bachelor of Science with First Class Honours in Mathematics for Business, followed by the degree of Master of Science at the University of Manchester in 1974.

Kathleen had asked me to read what she had written about Andrew but as a bank manager I seemed to have little spare time and ignored her request. Since finding now the exercise book in which she wrote her experiences I feel that they should be shared.

My elder son Simon, of whom Kathleen was also very fond, is a successful barrister in Lincoln's Inn Fields.

I am proud of having been Kathleen's husband and feel sure that she is safe in the arms of our Good Lord.

BRINGING UP ANDREW

By Kathleen Berry

My toddler son and I, and the baby in the pram, were at our local railway station, where we loved to watch the local trains disgorge their passengers and the Bristol to Paddington express go roaring through. Today, however, I sat there oblivious of everything.

It all started, I suppose, when just after the last war I was casually reading the "situations vacant" column in a national daily. A gown manufacturer required someone with experience for his factory opened in Bristol during the raids on London, when they were bombed out. The interview was in London so, as my friend and I were going there for a few days, I decided to apply. I got the job!

When I arrived in Bristol a member of the staff met me at the station and took me to a private hotel, where a room had been booked for me. It was quite exciting - new city, new job, new life. I thoroughly enjoyed myself at first but after a time living in a hotel became irksome - I couldn't do much in the evenings. Of course I went to the "flicks" as we called the cinema in those days and I have always been passionately interested in the theatre. Then I saw an advertisement in the local paper offering digs for a single girl so I called around and clinched the deal.

Mrs Cooke was very nice and I was able to do dressmaking or whatever I wanted to do, just like home. Every weekend Mrs Cooke liked to entertain different relatives and, although she didn't say anything, I felt she ought to have her home to herself for this so I joined a dancing class at the Folk House and there I met my husband. We were lucky enough to get a flat and a few months later we were married.

You know, I think our lives are mapped out for us. My parents were not happy together and this made me shirk marriage. When any of my former boyfriends "got serious" I always finished the affair. But moving away from home into a different environment altered my attitude and we were very happy. Especially when my first son, Simon, was born. Two years later my husband was moved to a town outside Bristol and we bought a house there. I became pregnant again and this led to the incident at the station.

That morning I had taken my new baby boy to see a specialist at the Children's Hospital and he had told me that Andrew was a spastic. At that time, seventeen years ago in 1951, the word was comparatively unknown. I had looked it up in the dictionary when I got home but the explanation didn't convey anything to me. Of course I began to worry. Should I have rested more during the pregnancy? Had I been too anxious for another child? Was it something I had done? When I put these questions to our local doctor he assured me that they had nothing to do with it but it was a long time before I could stop worrying.

Three months before this I had been rushed into hospital to give birth to an eight months baby. The birth seemed normal and the baby not unduly affected at first. A couple of days later he became very jaundiced, however, and so ill that the doctor didn't think he would live until the morning. The staff kindly sent to the Pro-Cathedral nearby for a priest and he was baptised. However the tough little creature survived and three weeks later we were able to go home.

By the time Andrew was nearly three months old I realised that he wasn't reacting to things like a normal child and I recalled in my last interview with the doctor at the Maternity Hospital when I asked him if the baby would be all right. He had replied "oh-er-yes". This made me suspect that I must keep an alert eye on Andrew. I thought he was blind and took him to my doctor - "that is certainly not the trouble" he said and made an appointment for us to see a specialist.

When the specialist told me "he is a spastic" the first thing I thought was "will he able to earn his own living?" - not that we were thinking of the money but we wanted him to feel independent. Girls can help at home and feel wanted but it is different for boys.

Until he was twelve months old I used to bath him in the back bedroom and if anyone came to the front door I would lay him down to answer it, knowing that he would be in exactly the same position when I returned.

You wouldn't do that with a normal baby!

Feeding took a long time because his tongue is spastic which affects his speech, though it has improved a great deal. In fact one of the first words he said was "Mon", his version of his brother's name Simon. Fortunately he wasn't incontinent though until he was about eight he wasn't able to manage the toilet himself - he couldn't stand still for one thing and of course he couldn't undo his trousers. I took to wearing rubber gloves so that I could whip them off and my hands would be dry to help him in any way he needed it.

We battled on, treating him as much as possible as a normal boy. He used to get awfully grubby as he spent most of his time crawling. One of the things he liked to do in the playpen was to tear up newspapers and make a pile in the corner - this wasn't easy for him as his hands are spastic.

One thing we had to be careful about was not to make too much fuss of Andrew so that Simon felt neglected. This worked, I think, because later on Simon said the boys at school used to say "what's it like having a spastic for a brother?" and Simon always answered "I don't think of him being a spastic - he's my brother".

The hardest part was not flying to Andrew's aid when he was struggling. What parent could resist this instinctive gesture we knew we mustn't help him too much.

Then hurrah - he started to walk, well tumble would be more accurate. But he struggled on. In fact, neighbours used to tell me that they watched him struggle in the garden. He would struggle and strive to accomplish something and would not give up.

Every week an ambulance called to take us to the Children' s Hospital in Bristol for physiotherapy. One day, the doctor said "pity you don't live in Bristol - he could go to the new school" and drew up sharply.

When my husband came home from the office I told him. We talked it over and decided to move to Bristol. In those days only children from the City were eligible for the School but nowadays they are taken from the surrounding districts.

My husband has been marvellous all along. It is true to say that without his understanding and co-operation things would have been much more difficult.

We set out to look for a house and bought the usual semi-detached. Needless to say, about this time the Government clamped down on mortgages and we lost quite a lot of money on our house. We soon settled in and our elder son went to a nearby School. The only thing was that my husband had to travel a long way to the office but as usual he didn't complain.

The ambulance still called to take us for physiotherapy and one day I asked the driver about a notice board saying "Bristol Education Committee" that I noticed on our journey. "That - oh, that's Claremont School for Handicapped Children". It was only a few minutes away from our house!

Bristol was one of the pioneers for a school for spastics. Homes had been provided, of course, but not a day school. VIP's from all over the world visit the school to study its methods and the effect it has on the lives of the children. Actually most spastics are intelligent. To jump the gun, my son has six "O" levels and is going on to take "A" levels.

When he was four Andrew was able to attend Claremont School and it was the best thing that could have happened to him. The staff there are marvellous. No silly sentimentality - they just do their job with skill and understanding under an exceptionally competent headmistress.

The Corporation provide transport to and from the School. Some of us mothers help one day a week - jobs like fetching the children from the classrooms for physiotherapy, or to the teacher of the deaf, and helping to feed them. This is just as much help to us as the staff as we learn quite a lot about how to help our children to help themselves. One of the things that helped me very much was the fact that I met other parents. I was forty when Andrew was born and of course I thought that my age had caused his cerebral palsy. I soon discovered that the parents were all ages and some of them had had one or two healthy children before. The social strata of the parents didn't matter either.

Of course we gave a party at Christmas when each child received a present given by the Parent-Staff Association (my husband was treasurer for twelve years). In the summer, the Summer Fayre is a popular money-raiser. People are very good and, as the children now come from all parts of Bristol, friends of the parents come from afar to support us.

Andrew very very slowly improved and the teacher spoke very highly of his intelligence, though his reading was very poor. This worried me as I am an avid reader and I hoped that, as he couldn't do much physically, he could at least have the pleasure of a good book. Now I come to think of it, who could enjoy reading a book that jogged about all the time and, if it was on a table, you had great difficulty in turning the pages. Incidentally, I didn't open a book for two years after Andrew's birth - I hadn't time!

I still had to take Andrew out in a pushchair and one day, whilst out shopping, the inevitable happened, something that I had dreaded for ages - a little boy said "Mummy, why is that big boy in a pushchair?" I held my breath but it didn't bother Andrew. In fact he has a marvellous capacity for accepting things hut at the same time finding a way around his handicap.

One day the Scoutmaster of the Handicapped Scout Group came to see us and Andrew became a Cub. The Scoutmaster and his wife do a wonderful job and the boys appreciate it very much. There are deaf boys, polio cases - in fact any boy with a handicap is welcomed and they are treated as normal Scouts. The Corporation arrange transport and, although they used to meet in a school, now a Charity Trust and public help have enabled them to have their own Headquarters, with ramps for the wheelchairs and anything else that makes things easier. They even go to "camp" in the summer in a village hall by the sea, which means an awful lot of work for the Scouters but they wouldn't dream of shirking it. We Mums and Dads help with Jumble Sales and the sale of Christmas cards to raise funds for the camp. We are certainly lucky to live in a city where there is a Handicapped Scout Group.

Then the Bank moved my husband to Bristol so everything was much easier. As we hadn't had a holiday we decided to go to the seaside. A boarding house wouldn't have been practicable so we plumped for a caravan. It would have been jolly good fun if it hadn't rained all the week! I did some washing at the beginning and it just had to stay out; you couldn't have wet washing in a caravan. So the next year we rented a chalet in a lovely part of Devon and as we had a car by now we were able to get about a lot more.

I remember one day on the beach at Bournemouth my husband "asked to be excused". As he went he said "keep an eye on Andrew". My eyes followed my husband up the cliff path and when I turned around there was no Andrew! I was horrified and, telling Simon to look after our things, I set off along the crowded beach to look for Andrew. I kept expecting to see arms flailing about in the sea and gazed earnestly at the group of people on the beach. I couldn't see him and made my way back, still searching and full of apprehension. As I approached the group next to us there was Andrew! Gosh, was I thankful. He had only wandered a few yards but I had built up all sorts of pictures in my mind.

The next couple of years we spent at holiday camps, where everyone was very kind. We took a small tablecloth with us to cover Andrew's end of the table because he couldn't use a knife and fork. We cut up his food for him but he didn't always aim the spoon towards his mouth! As he can't pick up a cup he uses straws (plastic) - we would have spent a fortune on the usual ones. He loves his food, like all boys, and is never happier than when he is "tucking in".

Andrew by now could ride a tricycle and was able to get about the camp on his own, which made the holiday more interesting for him. It was also a holiday for me, and my husband was able to play golf on a nearby course.

We went to Jersey the next two years and, as Andrew had improved a great deal, we were able to stay in a hotel, where everyone was just as kind.

Next year, the British climate being what it is, we decided to seek the sun and went to Italy. We drove to Gatwick and had the excitement of the flight over the Alps and the towns and country. We arrived about midnight and were amazed to find all the shops open as we were taken by bus from the airport to our hotel. The sunshine was gorgeous and we spent most of the time on the beach, which was just behind the hotel. Andrew loved to walk along the edge of the sea, splashing happily. He was very intrigued by the people who came along the beach, calling out their wares, and the second time we went to Italy we took his tape recorder with us. The sounds and the memories warmed us up in the winter when we played it!

He became very interested in tape recorders, wireless and things like that and it was obvious that he understood how they worked. He even began reading for pleasure - science books! We were very glad that he had an absorbing hobby. This led to a rather exciting incident a few years later. There was a comedy on television about a man who had his house turned over to gas. When he ordered a television set he was astonished to learn it would only work by electricity. Andrew said that it was not impossible to use gas and asked Daddy to write to Television Wales and West to tell them. This he did and we were surprised and delighted when a man from there called to interview Andrew. Not only that but his picture appeared in the T.V. Weekly with an article about him. The photographer was very good because Andrew looked quite normal in the picture. I called at his office and congratulated him on his skill.

Claremont School encouraged his interest in Art and he took to drawing, turning out some rather peculiar pictures! But he had great fun with it. His writing wasn't much better but my husband was able to get an electric typewriter for him, at a reduced rate, from a friend of his. Mind you, he didn't always land on the right key, which makes his spelling look a bit weird. One spot of excitement for the children at Claremont School was when the BBC made a film. They were there in the morning to show the children arriving and then took shots of them throughout the day - how they cope with gardening, domestic science, etc.

Claremont School started taking children from a wider area and Andrew became friendly with a boy from Bath who joined the handicapped Scouts. John would come to tea with us on Scout days, transport would call to take them to the meeting and bring them back. John spent the night with us and I took them both to school the next morning - John in his wheelchair and Andrew on his tricycle.

About this time my elder son Simon took to go-karting and joined a Bath Club. We all went to the meetings and when the track was empty Andrew had a go and did quite well.

Claremont School was next to a state school and when Andrew was ten he attended the State School, where he was very happy, apart from the football periods as of course he couldn't play. The physiotherapists at Claremont School kindly arranged for his treatment at these times so things worked out very well, especially as he made friends with a boy who has the same interests and has been exceptionally good to him. In fact they still spend quite a lot of time together in Andrew's "Mess Room" as we call the room which we put aside for all his equipment. It looks like a workshop - an oscilloscope, dozens of tools, electric equipment and textbooks galore!

The teachers at the State School confirmed that Andrew is intelligent. His reports were excellent and the time arrived for the "Eleven Plus" Exam. I went to see the Headmaster of the Grammar School, which my elder son attended, to see if Andrew would be accepted there if he passed the Exam. The Headmaster was very sympathetic but said he would have to consult the Governors. They said that it would create a precedent and so they wouldn't accept Andrew. I was bitterly disappointed but I realised their difficulty. Actually things turned out for the best. Bristol Corporation made an appointment for us and arranged transport to the Headquarters of the Spastics Society in London. During the interview the doctor said "now I am going to ask you all sorts of questions but you mustn't mind - we have to find out as much as possible about cerebral palsy to help our research. We want to know if the damage occurs before birth, at birth or afterwards". Apparently it was the jaundice which had damaged some of Andrew's brain cells and they are the only ones that cannot replace themselves. Nowadays they drain the blood of such cases and replace it. That has been learned from the research that goes on all the time. It is seventeen years too late to be of help to us but it emphasises that research must go on. Here I make a plea to everyone to continue to help the Spastics Society.

To go back to the interview, they talked to Andrew about his hobbies etc. and the result was that he became a pupil at Thomas Delarue School, in Tonbridge, Kent, run by the Spastics Society. Andrew accepted it with his usual savoire faire and didn't mind leaving home; in fact he looked forward to the new experience. My husband and I were the ones who worried! Bristol Education Committee have been exceptionally helpful. They pay the school fees and not only that, pay the train fares to and from school and provide an escort for the children.

Andrew settled in at once, making new friends. The school started in a large Victorian house, which was not very suitable. For instance, some of the rooms were down steps and the doorways were hardly wide enough for wheelchairs. Now, however, a new school has been built, which is all on the level, apart from a few bedrooms for the pupils who can mount stairs. The design is so good in fact that it won an award for the architect.

The children receive a normal education and are able to indulge in their hobbies and, of course, they have the companionship of others. Andrew is lucky in having a friend during the holidays. When I speak to other parents at Open Days, they say "how thankful we are when term starts - my child has no-one to play with and gets thoroughly bored during the holidays". This is more so with the very handicapped, of course, as they can't join in the usual games. In any case the other children make friends with their own schoolmates and can't be expected to desert them during the holidays.

My husband and I still attend the Parent-Staff meetings at Claremont School and help with the Summer Fayre, selling raffle tickets etc. All our neighbours are very good at supporting both. I often say it's a wonder they don't hide when they see me approaching as I sell draw tickets for the Bristol Spastics Society as well!

Andrew's speech gradually improved. He still doesn't walk normally although this doesn't prevent him from getting about but his hands are still not able to do things easily. I can't decide who are the worst off, the ones whose hands are normal but they are bound to a wheelchair or, like Andrew, mobile but handicapped in other ways.

Andrew is always needing expensive electronic equipment so during the last holidays he got a job in a laboratory - "so that I can pay for my own things" was his explanation of why he took it. He had lunch in the canteen there and said to me "you know, Mum, the young people accept me but the older ones just don't know how to treat me".

We have had wonderful help from all and sundry over the years. For instance, Andrew rang up from Tonbridge one day to ask if I would find out the meaning of a computer term. I knew that Wills, the tobacco people, had a computer so I went along to the factory. The expert came to see me and gave me the answer to Andrew's question. "If your son would like to see the computer department we shall be very pleased to show him around", he said. I thanked him for being so helpful and during the holidays made an appointment and we went to the factory. That was not the end of it, however. Some time later the firm modernised their computers and, incredibly, one of the staff called at the house and gave Andrew one of their old computers. These cost quite a lot of money so it was extremely generous of them.

The staff at the shop where Andrew goes for his electrical requirements have also been extremely good to him. They have frequently given up part of their dinner hour to do little jobs for him. He has had a typewriter made, with mathematical symbols as well as with ordinary ones, coating over 200 and a Bristol Charity Trust has paid for it.

Just before Christmas we were very worried. As I said, the Spastics Society is very short of funds and they found they could not afford to keep the children at Thomas Delarue School after the age of fifteen. This would have been a tragedy for Andrew as he would not have been able to take "A Levels". However the society arranged that those children capable of this could stay on. Not only that, they made arrangements for Andrew to attend Tonbridge Public School for seventeen sessions a week for Maths, Physics etc. He goes by the school bus and returns by public transport.

Twice Andrew has been to Lourdes. What is not generally known is that normal boys and girls give up ten days of their holiday, helping the handicapped there, which means hard, full time work.

The most wonderful thing about having a spastic son these days is that people accept them. They don't stare or make pointed remarks like they used to and this goes a long way to helping the handicapped to lead a normal life. In fact Andrew's attitude is so normal that in the Easter holidays he went over the Severn Bridge to Wales on his tricycle and had lunch at the Service Restaurant. Mind you, I had "butterflies in the tum" all the time he was away, but I didn't stop him. I must say it staggers me now when I think how helpless he used to be.

How fortunate that we don't know what Fate has in store for us! If anyone had told me when I was single that I should have a spastic son I would have said "I couldn't possibly look after him" but we cope with things when they come along.

I still worry about his being able to earn his own living so that he can be independent. I'm sure now that he will be able to as his talents are in the things of the future and it is very heartening to know that he can get such great help from people.