CHILDREN & SOCIETY (1990) 4:l 35-38

a Parent specialist

JOHN SUMNER

Introduction HANK you very much for the opportunity to talk to you as a parent to T say something about bringing up children who are handicapped. I have

two children, a little boy, Andrew, who is six and a half and a little girl, Judith who is five and a half. Andrew has cerebral palsy. He was diagnosed at one year old and he spent quite a considerable time at Honeylands. He has been at Vranch House for a year, he spent four and a half months, over a period of two years at the Peto Clinic in Budapest and he is now in main stream school in Exeter. He has been there for about nine months and is handling himself very well with his peers, he is in his proper class and is doing very well.

When Andrew was about two and a half to three years old, as parents we became increasingly frustrated that everyone else seemed to know what to do with Andrew and seemed to know what the problems were, but as parents we didn’t know. Although he was attending Honeylands and we had all the support, having his physio and home visits, we didn’t know quite what to do. We saw him having these physio sessions, we knew how to correct him to sit and to stand, but what could we, as a mum and dad, do for Andrew?

The Pet0 Clinic We were sat at home one night when we saw the programme Standing up for Joe on television and we thought ‘that’s it, we have got to get Andrew to Budapest’. I think there was a bit of shock and horror all round, but I won’t say anyone tried to talk us out of it because they didn’t. I didn’t know quite where to turn, who to get in touch with? Someone said to me ‘phone Freddie Brimblecobe, he’ll help you.’ So I phoned Freddie up and said ‘I’ve got this letter from Hungary, what should I do?’. ‘You go for it young man’ he said. That allayed all my fears and from the time we decided to go to Budapest all the

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professional people that we dealt with in Exeter gave us nothing but 100 per cent support, which was contrary to what I found from virtually the whole of the rest of the country from all parents that I spoke to in Budapest. They seemed to have great problems from their professional people, whereas here in Exeter we had nothing but total support.

I think we were probably amongst the first dozen to go from this country to Budapest and we went in the middle of 1986. It was quite a cultural shock to arrive behind the ‘Iron Curtain’, to find suddenly that the policemen all had pistols in their holsters, the guards had sub-machine guns and we stood there thinking, ‘have we done the right thing?’ It was quite a contrast to the Britain we know.

Our experiences in Budapest

We arrived at the Institute, Andrew had an assessment and they said yes they could work with him. Andrew had to go in for two hours a day, five days a week for a session of intense physio. He didn’t like it at first, but as time went on he came to enjoy his physio sessions. What came across to my wife and I was that they seemed to want to take time to teach the parents what they were doing. It seemed to be more important that the parent knew what was going on than the actual conductive education that was happening to the child. We found that when we came home from Budapest we knew we had a two hour programme of physiotherapy that we could do with our child, we knew why we were doing it and we knew what benefit Andrew would hopefully gain from the things we were taught.

It is very easy to go to work and say to your boss that you want a month off work to go to Budapest he says great off you go. You can’t very well go to the boss and say you want a month off work to go to Honeylands, which is a 100 yards up the road to learn how to treat your child. So this was a problem we faced as parents. It was easier to go to Budapest to learn to do physio- therapy (conductive education) with your child than it was togo to Honeylands.

One thing I did find from Budapest was that there was a great cultural difference between an Hungarian child and an English child. I was talking to one parent and he said that his little boy had been accepted to stay overnight on a full-time basis. He went in one morning to see them at breakfast. There were 21 children in his class. When he got there, there were 18 Hungarian children who spooned their food to their mouths and back, nicely eating their food; there were three children who used spoons but proceeded to flick the food at one another. The Hungarian children did seem to accept totally what was happening; the English children found it a bit different. There is a cultural difference between conductive education Hungarian style and conductive education English style.

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PARENT POWER: USING SPECIALIST HELP

The impact When we came home, until Andrew started Vranch House School full-time, my wife gave Andrew a two hour session of physiotherapy five days a week. In the past when we had been going to Honeylands and having their half hour or hour long session of physio for Andrew, the tendency was for the physio- therapist to say to the parents: ‘Andrew was a little stiff in his leg today, I think it would be a good idea if you could perhaps just fit in a little stretching of that leg over a period of a week’, and so we would go home and think if they only say ‘perhaps’ fit it in, it can’t be that important. The English can be so reticent, you almost have to be tnld what to do. When we went to Hungary, at the end of the month we asked them three questions: if they felt Andrew would walk, when they thought he would walk, and how well they thought he would walk? They replied that yes, one day Andrew would walk, first two sticks, then one stick, one day no sticks. The next question ‘when’? They said they were not prophets, ‘we don’t know.’ So we said ‘how well do you think he will walk?’ She looked at my wife and said: ‘well, it depends on how hard you work.’ We came out of that interview in floods of tears as the enormity of it hit us, but we appreciated their honesty because it made us come and realise as parents that we were responsible for Andrew’s well being just as much as the professionals and, although we might not be experts on physiotherapy, we could be expert on Andrew. I don’t need to know what any other child’s handicap is, but I do need to know what Andrew’s is and I need the honesty of the professionals to enab!e me to know what to do. So we found as a result of this that, when we were taking Andrew to Honeylands, instead of Andrew’s physio being two half hour sessions (that being his total physio for the week), Andrew was having five two hour sessions at home, and Honeylands were then telling us whether we were doing good or bad. If we weren’t doing so well, they would give us a few points where we could improve. As I said, the honesty came across.

Professional honesty One of the things I have always been grateful for was when we were first told of Andrew’s problem. We had a consultation with Dr Tripp, and he told us exactly what the problem was; he didn’t pull any punches. When we came out it seemed a little hard, but as time went on we appreciated the honesty, because we didn’t know whether Andrew would ever talk, whether he would ever walk, and we didn’t know quite what he would do.

I always remember one consultation very early on. Andrew started to talk at a very early age and hasn’t stopped since. He learnt his colours and he took a little ring along and with great pride my wife and I said ‘tell Dr Tripp

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what colour it is’, he looked at the ring and said ‘purple’. As parents we were excited, and we could see that Dr Tripp was just as excited - there was the honesty between the paediatrician and the parent. This was an issue that came across so many times, across the country, from parents I spoke to in Budapest. There wasn’t the honesty, and professional people hadn’t been as honest as they could be with parents, and so they were feeling frustrated.

Bringing the story up to date Andrew was repeatedly offered a full-time place in Budapest, but we found that with Honeylands, Vranch House, Dr Tripp and the professional people here, there was no need for us to go and live in Budapest. What I found was occasionally I needed to go to work and say ‘I need to know more about what is happening with Andrew; can I go to Budapest and take him?’ The answer always seemed to be ‘yes’.

Conclusion We had four visits to the Peto Clinic over a period of two years. Andrew hasn’t been back to the Clinic for 18 months, but he is in main stream school and is handling himself well with his peers. The main thing was the practical involvement of the parents. I feel so often that the parent can be the one person who is forgotten. They think about the child and all the professional people who know what they are doing, but the most important person, I feel, is the parent. The parents are with the child most days of the week, whereas the physiotherapist will see the child once a week. We really need to involve the parents totally so that they know what is going on, and we need to have total honesty between physios, paediatricians and the parents, because they don’t want to be washed off with anything.

One of the other things that came across so often again with parents in Hungary with handicapped children, was that they were told: ‘You forget that child, you go home and have another one’, but to that particular parent you can’t forget that child, that child is with you every day. He maybe stays awake every night and keeps you awake every night; you go to work tired every day, but you can’t forget that child. I would say that about 99 per cent of all parents of handicapped children want the best for their child and the only way that they can get the best is to be fully involved in the team.

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