As told to Susie Mallett and published in "Intelligent Love" by By Jo Graham, Chas McGuigan and Gill Maguire
We are a family with four children, born in 1988, 1990 and 1994. One of our twin sons, born in 1990, has athetoid cerebral palsy. We have always been willing to try different therapies and activities to encourage our son's development if we think that they might enable him to take as active a part in life as our other three children have always done. We run our business from our home and live as part of a large extended family, and we have always looked for activities for our son that fit in with our life-style and with the whole of family-life, as well as being suitable for him.
In 1995 we first learnt about Conductive Education on German television, in a report on Dr.Antje-Katrin Kuhnemann’s health magazine Sprechstunde (surgery).
Fr. Dr. Kuhnemann, a surgeon and doctor of internal medicine, is very well known and respected on German TV. In this particular programme she reported in depth about one of the first German children to attend the Petö Institute during the early nineties, and interviewed both the child and his family. It was this child’s father, Peter von Quadt, who had gone on to establish the national association, Verein Fortschritt, and by doing so introduce Conductive Education to many families in Germany. Fifteen years later he is still, expanding the services at a great pace in Bavaria, while other Fortschritt groups also thrive all over the country.
It was due to the high regard given to Fr. Dr. Kuhnemann and her magazine programme that we sat up and took notice, and then decided to find out more. This was not easy, even though at this time conductive education was becoming well known in the south of the country (we live in the north) and it was in Franconia in Bavaria that we found a clinic that was offering CE as part of its therapy package.
Fighting for funds
After long struggles with the health insurance company for funding, on three occasions, our son, then aged five, was able to attend this clinic, in southern Germany
for three weeks in 1997, and then again in 1998 and 99.
Here a part of each day was spent in a conductive group. For the rest of the day he took part in other activities, including manual therapy with Dr Pfaffenrot, physiotherapy, occupational therapy, music therapy, speech therapy, swimming and water games, and riding. All this was included in a package for children with disabilities that the clinic offered for several years – until its closure in 2002 when the health insurance companies refused to loose the fight and paid no longer. They were never happy about paying for those specific therapies that would not otherwise have been paid for individually. This included “Petö”, riding and manual therapy with Dr Pfaffenrot, all of which we wanted for our son.
Our fight with the health insurance company was more particularly over the fact that it would pay for such a course in the clinic only every three years, and we wanted to take part in conductive groups more regularly. We saw this as the only way in which we and our son could learn and progress and then be able to continue at home. We cannot say that there was anything in particular in our arguments that won them over, we just fought until they said Yes. The clinic was very popular with parents who wanted to have access to Conductive Education. Outside such a clinic we would have had to pay for it privately.
Before our son was able to attend the Conductive Education group at this clinic, the conductors working there had insisted that he should go to Hungary for “an assessment”. The journey to Budapest for a long weekend to attend this assessment was very inconvenient for the whole family. It is difficult travelling with four children under the age of seven at the best of times but, when one of them is disabled, it is even harder. We felt in those early years that not enough consideration was being given to these difficulties, and that this was made ever harder by the inflexibility of the Petö Institute and the conductors sent from there to work in Germany.
This compulsory assessment could just as easily have taken place at the clinic itself or at a local summer camp where there were conductors every year.
During the summer of 1995, before the first visit to take part in Conductive Education at the clinic had been finalised, we received a phone call from a family who had been involved in setting up a Petö Institute summer-camp at Fortschritt Waltrop, not too far from our home. Out of the blue we were asked whether we would like to take part – to start on the following Monday. Although this was a last-minute invitation our son was allowed to take the place offered to him as he had already been assessed in Hungary. This was the beginning of his conductive upbringing. He was five years old.
At about the same time as our first step was made towards what later became our conductive life style, we attended a meeting at the educational centre where our son attended Kindergarten and later school. Conductors had been invited to this meeting to speak to interested families, and to therapists, and teachers, to inform them about Conductive Education. Many such meetings were being organised in 1995 throughout Germany by the Fortschritt organisation.
For us, and against us
Attending this meeting was the director of the school and Kindergarten where it took place. The teachers who would later became our son’s teachers and the school's therapists were also present. The physiotherapist from a local town who has treated our son from birth up until today took a very active interest at this meeting too. Our son’s therapist remained very interested in what over the years has become known as Petö Therapie and has continued to be supportive of us and our dedication to bringing up our son using this form of upbringing. The head teacher and school’s therapists, though, argued against it from the start, although at that time they had as little knowledge of CE as we had.
Over the years we have experienced not just lack of support from these people, they have also demonstrated practically that they are against it. Over the years the classroom teachers have visited his Conductive Education sessions and integrated what they have learnt as much as possible into their lessons, but the director and therapists have stayed away. Even at that first meeting with the conductors, it had appeared to us that that they felt threatened by this “new” method. They continued to behave like this to this day.
Wanting to learn more
At that early stage, in 1995, what we heard on the television and at the first meeting was all the information that we were given, and we had no means of finding out more. There was no opportunity in those days for us to find anything in the Internet, and even less so in German.
It was therefore quite a shocking and fearful experience when we attended the first summer camp with our son, in August 1995. The first shock came when the door of the group was shut in the parents’ faces once the children were inside and our fear that we really had no idea was happening to them in that room. We had been given no information beforehand about the conductive group and we became none the wiser throughout the three-week course. We were allowed into the room for only one morning in the last week – just to watch with no instruction on what we were seeing, or how this might fit into our life. We had a private talk with a conductor on the last day, lasting for under one hour. Our son had made a lot of progress, so on the one hand we were very happy, but on the other we were not. We still did not really know what it was all about and still had no real notion of how to find out. The summer camp had cost us a lot of money, and we wanted to know more about what was happening there, about what we were buying.
We began to learn a little more when we started to attend the clinic that offered Conductive Education as part of a rehabilitation course for children with disabilities. There was generally more communication with the therapists and the parents in the clinic, and the conductors were expected to fit into this same, more open system. During our three visits there were always different conductors running the groups, and their openness and willingness to give the parents information differed greatly. We still did not spend more than one session in the group – watching, but not discussing, our child’s progress.
Towards conductive upbringing
Until the age of nine our son attended the above-mentioned clinic three times, and he also took part in three different summer camps organised through Verein Fortschritt with conductors from the Petö Institute. There was no follow-up and no continuity in this work. Each time, we met different conductors who went back to work in Hungary and could not offer us any further advice, either through home visits or in communication by letter or phone.
We have four children with five years between the oldest and the youngest, we also run our own family business from home. It was getting increasingly difficult for one of the parents and one or more of the children to travel away from home to attend therapy or education courses with our son. By the time that he was nine years old we had decided that it was time to stop all the travelling that was entailed by attending the Petö Institute's summer-camps and different therapies, as this was less than ideal for the rest of the family.
Conductive upbringing in our home had begun when our son was seven years old. During our first visit to this clinic, in 1996, we had met a conductor who began working with our son and family in our own home. We discussed this problem with her – she was by then working regularly with our family – and we decided to settled for a conductive upbringing at home that would entail three visits a year, for three weeks each, and any communication necessary in the in-between-times.
We had experienced so much success with conductive upbringing that we knew we should continue. This would be the easiest way for us and our family to help our son as best we could.
Conductive upbringing: a good choice
We had seen success with other methods over the years. We had worked intensively with our son when he was a baby and young child, using Vojta therapy that was taught to us in weekly sessions with our long-standing physiotherapist, and we continued the work at home. We believe that both Vojta and Conductive Education have worked for us because both were carried through intensively and consequently over a long period of time.
Conductive Education has given us concrete ways of using the improved movements made possible through doing the Vojta treatment. Our son needed strong discipline as a child and the structure of Conductive Education has suited him very well. He has much preferred the practical, everyday activities that he has learned to do in Conductive Education to the abstract movements of Vojta.
Over the years our son has often said that he prefers doing his Conductive Education with his family, where he can learn to use the things in his own home that he needs in his everyday life. From the very beginning, for example, he had to learn to walk the stairs at home, as we live on the second and third floors of an old farmhouse. The stairs spiral upwards, they are tiled and have no banister. He has walked both up and down them for the past five years totally independently. Having learnt this at home he is able to climb stairs, and step on and off the curb, step on to buses and trains, wherever he finds himself. He is very independent outside of his home, as he learnt early on to climb the stairs.
By working together with the conductor we have been able to identify the understandings and skills, and the attitudes, that our son has needed to develop at specific times in his life. We have been able to offer our son all the experiences that our other children have had by learning how to do them with him, despite his motor disorder, and we have been able to motivate him to take part in all that we do as a family. The conductor has worked intensively on certain skills and we have been able to observe how to incorporate this into our lives in different situations. Even though sometimes we feel that we are not being one hundred percent conductive we try not to help out more than we would with our other children.
It has been important for us to have someone observing and suggesting "from the outside" at regular intervals as we have not always recognised the developmental and the teaching needs of our son immediately.
When he was still quite young, our son has also told us that he did not wish to be away from his brother and sisters for long periods in order to attend different courses. His siblings were by then all attending school, so none of them could go with him.
Conductive Education is probably the only one of the treatments, therapies and educational methods that we have tried that has been an education for the whole family. This includes grandmothers and grandfathers, aunties, uncles and cousins, as well as our immediate family members.
Our children have grown up with a relationship to disability that is completely different from that of their peers. They do not see their brother as someone with a disability. They expect him to behave as they do and to try all that they try. They expect him to play a full role in their family life. Through this they see all disabled people first as a person, just as they see their brother.
Our other children have often had to take a back-seat. They have perhaps missed out on activities like cycling as a family or going on long walking holidays together. We have always found it important as a family to do things that we could all do together, to take holidays that included activities for our son. This may have restricted some activities for three of our children but it also put high expectations on their brother with the movement disorder. If we were on a holiday by a lake he too was expected to help pump up the boat, jump or fall off the pier, paddle the boat and swim out to an island. If we were at a concert he was expected to behave accordingly and in a restaurant to eat with the manners expected of his siblings. They were all very strict with him even as young children, although they also helped him enormously.
The children are all young adults now. They are willing to take responsibility for their brother when they are out together. At village parties they will check now and then that he is OK, even correcting his behaviour if they think this necessary. All the children have been brought up in the same way, with the same expectations. When younger they would all join in different parts of the conductive programme on returning from school, enabling them not only to learn about their brother's special needs but also how and when to say No, how to encourage and motivate him, and if necessary how to take care.
Perhaps the time and attention that our disabled son has needed had the most negative influence in the life of the oldest of his siblings, his sister. She was the one who was always left behind at home, as she was already at school when his different treatments began. The start of a conductive upbringing at home therefore had a positive influence on this child’s life and she has always taken a great interest in it.
His sister still takes responsibility more than the others do to take her brother out without us, his parents. It is because of the knowledge that she has that she is able to do this and we think that through conductive upbringing in our home that this acquisition of knowledge has been possible.
Our whole family, and that includes both sets of grandparents, along with aunties and cousins, has acquired a lot of knowledge about conductive education and upbringing over the years. This has been possible for us only because of the continuity of working with the same conductor over a long period of time, now almost fourteen years.
We live in a small community with Grandparents in the same house, and aunties and uncles and cousins just a couple of doors or streets away. It was been a boon to us to be able to share this special upbringing with all of them. They have been able to join in conductive activities, ask questions and take over some of the practise sessions, but only because the conductor was working in our home. Family members can not only go for a walk with our son but also know how to encourage his awareness in the street. Children in the extended family can play board games with our son, knowing how to help him to throw the dice for himself and knowing not automatically do it for him. They can do this because over the last fourteen years they have all at some time joined in, asked questions and been shown how to help our son for the best by us or by the conductor.
Going on into the world
We have been able to introduce Conductive Education to other areas of our son’s life through the conductor's making visits to schools and work placements, and attending parties and social events in the village with our son and family. The conductor has also taken part in many of our son’s normal day-to-day activities, like visiting the hairdresser, taking bus rides, visiting museums and restaurants, encouraging independence in these areas of his life too.
We do our best to encourage our son to live as independently as he can, to take an active part in life in the same way as do all our children. It is very important for us to have a conductor join our family two or three times each year to continue advising us and teaching our son new skills for his ever-changing life.
Our son is now at work in a sheltered workshop for disabled people. We feel that it is very important to continue working with a conductor during these years of transition from childhood to adulthood. Liaising between work, home and conductor continues. Most recently we have been to meetings together to discussion the suitability of work-practice placements. Solving problems in discipline at work has been incorporated in the conductive programme at home, as has choosing new hobbies and sport activities. Our son is given special leave from work when the conductor visits our home, for a total of six weeks a year – equivalent to the time-off that he would be given each year for rehabilitation.
We see no end to our son's conductive upbringing. As a young adult he is being put into more and more new situations, each bringing with it new problems to solve. He phones the conductor regularly to discuss these with her, and it makes no difference whether social, psychological or physical problems are actual, they all get incorporated and worked on the next time that they meet.
My eyes felt hungrier and hungrier as I read this post. You are so right. There are so many times with my boy when I have had to simply toss something aside because it didn't work, or he didn't want it; and then the oddest little moments and solutions occur. You said, Susie. Keep going. It's poetry.
It is nice to start a day having read comments like this.
Facing the minus-many temperature this morning was so much easier having read this before I set out. It had the same effect as a hot bowl of porridge, warming from the inside.
Thank you for reading James.