1st EBU International Conference on Education, 19-23 July 2000, Montegrotto Terme (Padua) - Italy
I am very very pleased to be here. Some of you know the story of my terrible mistake in confusing the dates of this conference right up until this last weekend. For those of you who don't, I will tell you sometime. It is sufficient to say that I had got myself into a real muddle, and at one point I thought I would not manage to be here - and I am so very pleased to be.
I thank you for your invitation to speak at this conference. The EBU and its discussions are highly regarded and it is a privilege to be asked. I am also delighted that you are holding the conference in such a lovely city, which gives me the chance to experience it.
In this paper I want to discuss some of the ways in which the parent/professional relationship can sometimes go wrong.
In most European countries now, professionals work with parents and families of visually impaired children. This can be an excellent partnership, - one that can be really helpful for the development of the child and supportive for the parents.
But there are so many ways in which professionals, far from helping parents can really make things more difficult for them and add real pressures to their lives.
Firstly I need to tell you a bit about my own background. I was a mainstream primary teacher for the first few years of my teaching career. I then took a degree in special education, and then specialized in visual impairment. I eventually became head of an advisory service for visually impaired children in a region of England, and my team of teachers were responsible for the pre school children and for those pupils integrated into mainstream schools, as well as maintaining links with the special schools. I finally went to the University of Birmingham as a teacher trainer. Having retired from that, I am now back in the field, working with young children, their parents and also supporting blind and visually impaired students in Universities and colleges. Currently, I am also undertaking a review of the adult residential services of SENSE, the UK organisation for the deafblind.
But I am also a parent of a son with severe learning disabilities. He is the second of my four sons. And as a parent I had involvements with professionals of all types, so I relate very much to the issues I raise in this paper. Because of Pete I have also been involved with the United Kingdom society for mentally handicapped children and so many of my friends have sons and daughters with severe learning difficulties. So I have a wide experience of being with parents of disabled children. What I say in this paper is a reflection of what many of these parents have said.
When I use the term 'professional', I am referring to a wide range of people, - doctors, teachers, therapists, social workers, administrators, anyone who comes into contact with the family simply because there a disabled member.
It's a rather peculiar situation. Just because you have a disabled child, this seems to give a tremendous amount of people the right to become involved with your life. Very few people have the right to be involved with me and my life when I am just Juliet Stone, but as the parent of a disabled child, that all changes. It seems many, many people can become involved. Even when Pete, my son was young, which was thirty years ago, a lot of people came into my life - and my home, - doctors, educationalists, administrators, social workers. Nowadays, there seem to even more people that can become involved. All seem to have a right to get involved with the family. As a parent, I dare not refuse, even if I wanted to.
Firstly, because yes, there are ways in which professionals can help me and secondly, if I refuse their help, I can be seen as not being a 'good parent'.
Many other parents have said that they resent the intrusion into their lives, but are too scared to say so.
Why should parents of a visually impaired or other disabled child need help? Having such a child may make very little difference to the experiences and to the interaction of the family. Life may not be very different to other families without a disabled child.
But I think most families with a disabled child, will find that their lives are different to what they expected - in some ways for the better - in some ways perhaps with more problems, but different anyway.
Birth, going to school, leaving school, going to college or work, getting married, having a family, the death of parents. If you consider these events, there are very few which won't be affected if one member of the family has a disability.
There is a wealth of literature, which discusses the effect of the birth of a disabled child to a family. I actually disagree with some of it. I firmly believe that parents do not automatically feel guilty, bereaved, resentful and so on. Of course, some of them do, - but not all. For some parents, it is not until the child reaches some of the milestones that I have just mentioned that the real impact of the disability happens. For example, starting school should be an exciting time for the young child - and for the family. But if the child has a severe visual impairment it may be very different. What sort of school will the child go to, will it have to be residential? Will the child have the type of help that is required? Will the authorities agree? Many parents have to fight for the sort of provision they want, - and this is not the sort of experience that parents of non disabled children have. This may be the first time that parents really appreciate that their lives are different and could be one example of a situation where parents may appreciate some help.
Leaving school, the transition into work or college and adulthood - such another exciting time. But for the young person with a visual impairment and his or her parents, it may be a very difficult time, particularly if the young person has additional difficulties. Parents are getting older, perhaps not as fit as they were, and the young person is getting bigger and stronger. The parents may worry about the future - about what will happen to their son or daughter when they are gone. Parents of non disabled children do not have the same worries.
Professionals working with families feel that they have a lot to offer parents with a visually impaired child.
Firstly work with Pre school children. The role might include:
Later on at school, the role may be being the link person between home and school, advising on choice of courses, transition plans etc. The role will also involve working with mainstream teachers - but that's another subject.
I have no problem with any of this - these are all important aspects of supporting parents and the child and young person.
But I do have concerns about the wider implications of the role and it is really to do with the 'How' professionals carry out this role. There are several aspects of how to - and how not to- be with parents. Much is written about good practice, but I want to highlight the problems for parents when the support is not carried out in an extremely sensitive way.
Firstly, it is generally thought there are a lot of advantages in working with the young child and its parents in the home situation. Sessions can be in a familiar, informal situation, where the child, particularly the youngest ones, and the parents feel comfortable. The child will most probably respond in a more positive way in his or her home, than in a more clinical setting. In addition, home visits can save parents long and frequent journeys to other venues, such as hospitals.
And there are many other occasions throughout the child's life when professionals may visit the home.
This can seem sensible, but there are dangers in these home visits. I have mentioned the general sense of intrusion that parents can feel, but there are other features.
It is almost impossible for professionals to stop being judgmental when they visit a home. However hard they try, it is difficult to ignore what they see and feel about a home they go into. We know that for ourselves. When we visit the homes of friends, some are immaculately clean and tidy, some are chaotic. Some are very rich homes, some very poor, but we cannot ignore what we experience when we go into them.
Parents realise this and feel that they are being judged by the professional that comes into the home.
Most of us, too, when expecting visitors will have made an effort at tidying and cleaning, even when it is friends coming to the house.
Imagine the cleaning that could go on before a stranger - and a professional at that - arrives. But parents know that professionals have influence - they can influence what happens to our children. They will probably write a report on us - and the house - afterwards. Imagine what they might write about us. Parents fully appreciate this and many spend a long time tidying and cleaning the house before the professional come. I know I did. It was almost a nightlong job to get it done, - everything put away, - everything cleaned - really hard work. Yet professionals are convinced that their input is always helpful. Little do some of them know.
We must do everything we can to ease this pressure on parents.
And then of course there may be other children in the family. Parents know that the professional will want to talk to them, the parents, so it's a case of 'Children, you must keep quiet when the visitor is here, because I want to talk and listen'. Those of us who have had experience of young - and not so young- children - know that frequently the one time when you want them to be at their most quiet is when they will be at their most noisy. Again, what will the professional think? That they are bad parents who can't manage their children?
Then of course, you must have the coffee and biscuits ready, and get the best cups out.........
Even preparing for the visit of the professional can be a real pressure for the family.
So the professional arrives at the house. Some parents might wonder, 'Have the neighbours noticed? Do they know why this person and that person keep on coming to see me? Will I have to explain to them?
It can set you apart having a lot of obviously professional people coming to the door.
The session starts. Hopefully, all will go well and it will prove to be constructive and helpful time, but what if it doesn't. What if the professional says something and the parent wants to disagree. One parent said to me 'I find it really difficult to disagree with someone in my home. When you're in my home, you are a guest and I will treat you courteously. Even if I think you are talking rubbish, I probably won't say so - it would seem rude!' I am sure many of us can sympathise with that feeling.
Another father said to me, 'If I could just meet them on neutral ground I feel I could have a much more equal conversation. But in my home, I'd probably keep my mouth closed'.
Parents may feel reluctant to disagree with a professional, - the expert-, but this can be particularly so when the meeting takes place in the home.
Unless the professional is very aware of these possible feelings, he or she may go away from the visit with a very wrong idea about what the parents think and feel.
Another point I would like to raise is that families have their own culture. We easily recognize that countries have different cultures, - we have celebrated some this week. So do towns and villages within each country. Padua and Venice will have differences. And each family has its own individual culture.
For example - when my sons were small, we lived in a fairly big house. On Christmas Eve, the night that Father Christmas comes to England, we had a routine. To get the boys to bed on that exciting night, I told my boys that when they were in bed, if they listened hard, they would hear the bell of the sleigh that carried Father Christmas. Once they had gone to bed, I had a small bell that I would take into the garden and ring. This happened every year.
Recently, when my sons, now adults, were staying with me at Christmas - and having drunk a little too much English beer - they asked me if I would stay up and ring the bell! They were unlucky.
It was just a simple part of our family's culture, not shared by any other family.
These traditions - ways of family interacting are important to us all. A professional who comes into the home and doesn't appreciate the individuality of a family can do real harm. A thoughtless chance remark can do a lot of damage.
Here is an example of what I mean. A professional might advise on suitable and appropriate books that parents can read to their children to help the child's language, help the development of important concepts and as part of a pre literacy strategy. This seems a sensible suggestion. But suppose books aren't a part of the families' culture - it isn't a home where books, newspapers and so on have a part. Far from making a helpful suggestion, we may have put another pressure on the families and perhaps have unwittingly suggested that they are not a 'good' family. Of course they are - it's just a different family culture.
If professionals do not take account of the feelings and influence of the larger family circle, such as grandparents, this too can be unhelpful.
I mentioned earlier that one reason for a visit might be to give advice on toys and also activities. This can clearly be enormously helpful to parents, for visual stimulation programmes, early mobility ideas and so on. But a situation that happened to me many years ago still haunts me. I was seeing a two year old blind child on a weekly basis - I saw her every Tuesday morning. I had worked hard to devise some really good programmes for her and I thought the mother and I had a very good relationship. One Tuesday morning I arrived as usual and knocked on the door. Mother opened it and said 'Oh no, Juliet, it's not Tuesday again already- I haven't had time to do half the things you told me to do last week yet'.
Oh dear. Far from being supportive and helpful to mother, I had added a real pressure to her life. I had forgotten, in my professional enthusiasm, that parents have other things to do besides carrying out my suggestions! They had their jobs, looking after the family and the home. Of course they wanted to do their best for their visually impaired child, but there was the rest of their lives to cope with as well.
And I have known so many situations very like this. One mother said to me 'It's all very well for teachers to give me things to do with John - I want things he can do by himself and let me a bit of time to get on'.
So is our intervention always appropriate?
We can offer the knowledge that we have gained from our experience with all the children we've worked with, but we don't know that individual child as well as the parents.
Parents are the one that know the child. Sometimes I am afraid that professionals want to impose our ideas on families and parents, rather than start from where they - and the child - are at the time.
Another thing that some parents find difficult to cope with is the reaction of other people. Sometimes this can be hostile, but perhaps it's even more difficult to cope with when the attitude seems sympathetic. When Pete - my son- was young, I was often told 'You're marvellous - managing as you do, I never could'. So many other parents have experienced the same reaction. It can make them feel very uncomfortable. I expect a number of people in this audience have a similar story to tell. But as one father said 'You just go to bed and get up the next morning and carry on. You don't spend all the time thinking about it - you just cope because you have to'.
Professionals must be very careful about the attitudes they demonstrate when they are with parents. We don't want sympathy, - we want some practical advice, some useful information.
Professionals must also realise that what seems abnormal for other families becomes just normal for us.
Pete, my son, was very hyperactive, very tall and strong and would suddenly move towards anything at a lightning speed. So if we had hot drinks around, such as tea or coffee, it was safest to drink them standing up so that Pete couldn't suddenly make a leap for it. This became just normal for us, although visitors were sometimes very surprised. Parents do develop strategies and quickly become used to unusual lives. Professionals must expect this.
All families have their internal stresses and exciting times - situations affecting other members of their family, some good, some bad. Weddings, birthdays, children changing schools, illness, care for elderly parents, - every family experiences them.
Here is not the place to tell you about mine, - but I can assure you there were plenty of life problems along the way. There were many times when the focus of the family's interest and concern was a long way away from Peter. We didn't have time to concentrate on Peter, there were too many other things to think about. I know many other parents who have said the some type of thing, I remember a mother of a deaf child who told me that she had two teenage sons as well. She also had her mother and her grandmother living with her. She said that the rivalry between these two was very open and most of her time was spent keeping the peace between the two of them. She went on to say that her mind was often on other members of her family, not her deaf child. Again, professionals need to be aware that there will be times where families cannot concentrate on - and work with - their child.
Professionals must never say anything that might make the parents feel guilty.
A final point about parents. I want to make it clear that just because I - and other parents like me - have a child with a disability, it doesn't make us better people or parents. There sometimes seems to be an assumption that we are, - that we can work harder and longer, that we have endless patience and dedication, that somehow we have more time than anyone else. Or at least, if we aren't better people or parents than anyone else, - we should be.
Well, we're not. We are not fitter, or more clever. We have not got more energy, more patience - probably the reverse. We're most likely to be more tired with very little energy or patience, - our reserves may well have been used up.
Most of us, as I have said, don't want sympathy, we want practical help, and the right to access all the facilities that other families have.
In this paper, I have deliberately focused on the negative aspects of parents and professionals working together. I am not suggesting for a minute that there are many professionals who would approach working with parents in a tactless, insensitive way, - at least deliberately. I have been fortunate enough to work with some excellent people - who have provided parents, their families and the child with support, help and advice which has had the most positive influence.
All I am suggesting is that there are some professionals who may miss some aspects of working with families and do real harm.
What can authorities and services do to ensure that the help parents and their children receive the very best support that can be delivered? Firstly by taking extreme care with the people they select. Just because teachers are good at teaching, it doesn't mean that they are necessarily the best people to work in the delicate situation of family interaction. The same is true of doctors', therapists, social workers and so on.
The next thing that managers can do is to provide training for the personnel they select. It amazes me that too often, people are appointed to these jobs and not given any extra training at all. It is a critical issue.
Sensitive help and support can be really positive intervention. The examples I have noted in this paper suggest interference and none of us can allow this to happen.
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