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This book tells the life stories of nine physically handicapped young adults in Finland. Each of these young adults received the English Kerland/Brainwave home-based treatment when they were young. The rehabilitation was given three hours a day by the parents of the children and volunteers who came to assist in the process. These were the first children in Finland who participated in the home-based treatment program in the early 1990's. The health care professionals had given them little hope for the future due to complications in birth. But their brave parents wanted to do more for their children than the traditional Finnish rehabilitation had to offer. These children developed remarkably well and some of them showed signs of improvement already from the start of the home-based treatment program. Many of them learned to walk during the years. All this encouraged the parents to continue to do their utmost for their children. These life stories give hope to all families of physically handicapped children who have the opportunity to rehabilitate their child at home. This book is about perseverance, willpower and hope, and how parents can actively take part in rehabilitating their children.
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A little girl was severely disabled. She refused to go out and play so that nobody would see her.
- I can’t stand people staring at me, she said to her parents.
- Those people who stare have been infected with a staring sickness, her mother told.
- Only people like you can cure them.
- How come? asked the girl
- Look them in the eye and say: I am doing fine - how about you?
- When you see them turning red, you know that they have been cured from the staring sickness, with your help.
It is amazing how many persons the little girl has been able to cure.
(Positiivari-magazine, 1996)
To the reader
The basis for holistic rehabilitation
Kerland/Brainwave centre and its functioning principles
Kerland/Brainwave Centre in Finland
Life stories of the young
Juha
Jutta
Louhi
Memme
Salla
Sanni
Tiia
Unsku
Veikko
On the prevention of cerebral palsy brain damage
Summary of the becoming adult strories of the young
Thoughts after writing the book
Related bibliography
This book describes the life stories of young adults who have participated in the Kerland/Brainwave home-based treatment program. Rehabilitation conducted at home requires strength, patience and money from the family. Without external assistants this kind of rehabilitation would not be possible.
The life stories were collected from accounts of nearly 30 years´ time. Most of these young adults were born premature. The moment of birth was extremely critical and the thread of life was very thin, as one mother said. Almost all of these young adults have cerebral palsy and some of them also other disturbances in development. The life stories describe the lives of these young adults during the years.
The Finnish health care experts didn’t give much future prospects for the children, so their parents had a strong feeling that hope for their child’s development was taken from them in Finland. The knowledge of different, foreign rehabilitation methods, where the parents were active in their child’s rehabilitation, tempted the parents to give them a try.
This book tells about the Kerland Centre, which came into the awareness of Finnish families at the beginning of the 1990’s, and the families participating in the program. The Kerland Centre answered the parents’ need to participate in their child’s rehabilitation in larger amount than it was possible in Finland at that time. The name of the Centre changed into Brainwave Centre with the new owners. In this book I use the name Kerland/Brainwave due to the fact that most of the Finnish families participated in the program already before the name was changed. First the families traveled to England but later on the Centre opened a receptioncentre in Kankaanpää, Finland also.
The Finnish health care experts criticized the foreign rehabilitation method, sometimes with quite strong wordings. They saw that the theory base of the rehabilitation didn’t base enough on scientific research and that the parents cannot act as the rehabilitator of their own child. Despite all this, the parents had the courage to question the traditional Finnish concepts of parents’ participation in supporting their own child’s development.
The life stories of the children are based on the memories of the children and of their parents, but the most important parts are the current affairs. Some of the young adults were able to write themselves and I edited those texts to fit into this book. Other life stories are based on what the parents have told. Also some young adults have their siblings describing their memories.
I started the interviews in the summer of 2013 and added some information during the following years. The interviews took place in the homes of the families all around Finland. The families were selected on the basis of them I was able to reach after such a long time since the start of the rehabilitation.
The life stories start with description of childhood and problems with birth. Then, how home-based treatment was realized and its benefits are described. The book also describes school years of the children and their life today, what are they doing now, where they live and what kind of choices they have made in life.
The functioning principles of the Kerland/Brainwave Centre are described in this book and also the background history and how the Centre was brought to Finland. Some of the young adults tell the story of their travel to England with their parents.
The idea to write this book has been influenced by my possibility to follow the life of one of the young adults in this book, Juha, and his rehabilitation by the home-based treatment program from the first years onwards. I visited the Kerland/Brainwave Centre with Juha’s family a couple of times and I wrote a book of Juha’s rehabilitation years called Juhan askeleet (Karvonen, 1999). Many years afterwards I had the pleasure of attending Juha’s wedding. And there I had the idea of finding out how the other young adults are doing, who participated in the home-based treatment program at the same time as Juha. Has life offered them times of happiness or difficulty? Looking back, has the home-based treatment been of any use? What kind of plans for the future they have? Inspired by these questions I decided to start collecting the life stories of these young adults.
The young adults and their families in this book have been breaking the limits and surpassing them in many ways. These young adults have been lucky enough to have such parents who had the courage and strength to fulfill sometimes heavy home-based treatment during several years. Here are the stories of Juha, Jutta, Louhi, Memme, Salla, Sanni, Tiia, Unsku and Veikko told together with their families. All the poems in the book are by one of the young adults, Jutta, from her book Keneen lie tullut (Selänpää, 2009).
Jyväskylä, February 15th, 2016
Pirkko Karvonen
I remember my childhood
when I was planning my future.
I was dreaming about everything; I didn’t know what real life is.
I thought life never changes.
One day my journey started. It was more difficult than I thought.
My parents taught me how to move on.
Every year I grew up, my journey proceeded.
There were sometimes turns-off, I lost my childhood.
A year after one, I came back to the old school.
We shared happy moments with classmates,
we let bad days go away.
I had my first love.
My family supported me at home.
Now I have lived my life.
So many kilometers.
My journey moves on.
I think I never want it to stop.
I can still live my life with you.
Someday the destination will wait for me,
stop my journey.
I’m moving on the unknown way.
Through the troubles.
I will live my life with you.
The Finnish families of disabled children found out about foreign rehabilitation Centres via magazines and books published abroad. In the United States they developed rehabilitation methods for disabled adults already in the 1950’s. Glenn Doman, who had been educated as a physiotherapist, had the idea of the rehabilitation when he was treating adults who had been injured to the head in the World War II.
Rehabilitation for children was developed later on. The main work in his career Doman has done in developing rehabilitation for children with brain injuries. He has received help in this work from a team that was composed of experts in child development, doctors, teachers, brain surgeons and psychologists. The main characters, in addition to Doman, in this development work have been Carl Delacato and Temple Fay.
In addition to rehabilitation for disabled children, the working group also studied the brain development of healthy children. During the years, the paths of these main characters have gone their own ways probably due to differences in point of view.
In 1955 Doman established an institution and he has acted as the director of it for the rest of his life. The Institute for the Achievement of Human Potential is located in Philadelphia, in The United States. The institute has side offices in different parts of the world, like in Japan, Italy, Spain, Mexico, Australia and Norway.
The rehabilitation program for brain injured children is based on neurological development which consists of three sensoric (vision, auditory and tactile) and of three motoric parts (mobility, language and manual). In the rehabilitation, the development of the usage capacity of the brain and wide usage of brain through many sensoric channels are worked on at the earliest possible phase. New bridges are built via sensoric stimulus to pass the injured parts in the brain. With frequent repetition the feeling, hearing and eyesight are stimulated and thus the new brain areas are made to perform tasks that the injured areas cannot perform. In the background there is a strong view of plasticity of the brain.
In addition to the rehabilitation of disabled children, The Doman Institute also arranges courses to the parents of healthy children of how they can advance the use of the brain capacity of their children and thus learning. Doman has published several books and some of them are listed in the references of this book.
Doman also visited Finland in 1985 through an invitation of a few active mothers. He gave a five-day course to a small group that mostly consisted of the parents of disabled children. New points of view for the rehabilitation of children, who require special care and upbringing and for supporting the early development of healthy children was the title of the seminar. During the visit to Finland, Doman expressed his interest in establishing his Institute in Finland, but the official health care system in Finland wasn’t ready for it.
After the 5-day course Doman gave brief and general consultation to the families who asked for it. For example, he gave advice to the mother of a five year-old, dysphasic boy as follows: 1. Leave out junk food. No sweets, no additives. Food as organic as possible. 2. Practice handling of a ball with your child in different ways, like throwing, rolling and catching. This advances finding the chirality and strengthens eye-hand coordination. 3. Persuade your child to move, that is how his oxygen intake increases. Swimming and especially diving and also running and skiing are preferred sports. In those the child will practice reciprocity of his limbs. 4. Play with the reading cards with your child. There are whole, single words written on the cards that are shown to the child. The words are written with bigger font and they are connected to the interest of each child.
Six months after Doman’s visit, a couple of us who organized his seminar in Finland had the opportunity to travel to Philadelphia to a course called What To Do About Your Brain-Injured Child and get better acquainted with the Institute. There were people from all around the world attending the week-long course. We were given lectures and demonstrations. Doman himself was the main lecturer who told us about the different phases of the Institute and its functioning principles.
After about five years since Doman`s visit to a broader discussion was started about the possibility to get rehabilitation from abroad that would engage active parents in doing more themselves for the development of their child. This hope started to materialize when families received information about the Centres in England and Belgium.
The English Kerland Centre was established when one of the founding members had studied in the Doman Institute in Philadelphia. After returning to England he founded the Kerland Centre in 1982. The name of the Centre was changed to Brainwave Centre in 1995 when the leaders of the Centre were changed. (www.brainwave.org.uk)
The current director of the Brainwave Centre, Phil Edge, says that at the moment the Centre is functioning only in England. Many years ago Brainwave Centre was active also in Switzerland, Japan and Finland. But in England the necessity of services was growing steadily and so finally the activities were centralized in England and ended in other countries.
Brainwave Centre was established in Finland in 1993 and during the next 10 years the therapists of the Centre consulted in Finland. However, all the families first traveled to England for the first evaluation. The Brainwave Centre evaluates that there have been over 50 children with their families participating in the program. Another Nordic country visiting the Centre was Sweden. There were only a couple of Swedish families and Kerland/Brainwave didn’t open a branch in Sweden.
The aim of the Brainwave Centre is to help children with disabilities and additional needs to achieve better independence. The activities also aim to add mobility, communication skills and learning potential of these children through multiple learning and physical therapies.
The programs designed for the children are meant to be done with the help of the family. The programs are planned based on two-day evaluation in one of the therapy Centres in England (Somerset, Essec, Chesire).
The first day is spent by the therapy team evaluating the abilities of the child and they also discuss with the parents of their goals and hopes. Sometimes the child is also present at these discussions. This requires a lot of work because the described exercises must be achievable. When the therapists have designed the program, the second day is spent teaching the exercises to the parents so that they are able to execute them at home.
The parents are given all the needed equipment and materials to execute the program. Nowadays there are supporting therapists and family assistants who keep regular contact with the families. At the moment Brainwave Centre employs physiotherapists, occupational therapists, speech therapists and educational therapists who work together in order to offer a rehabilitation program for the child. Each 4 – 6 months the families return to one of the centers for follow-up evaluation where the progress of the child is monitored and the program is changed to reflect the progress. The basic aim for each child is to achieve the greatest possible independence at their developmental level.
There are children at the Brainwave Centre who have multiple diagnosis and injuries. The ages of the children vary from six months to 12 years; however most of them are under five years old. The analysis made at the end of 2014 showed that the most common diagnosis were as follows:
Cerebral Palsy 33%
Developmental delay 20%
Down syndrome 7%
Autism 8%
Chromosome anomaly 8%
Unknown diagnosis 3%
There were also other diagnoses (21%) such as meningitis,
rare genetic disorders or disorders as a consequence of an accident.
The Brainwave Centre celebrated its 30th jubilee in 2012. During that time, over 2000 children have received evaluation at the center. According to Phil Edge, there hasn’t been any quantitative research due to it being too expensive, but the universities of Bournemouth and West-England have conducted two qualitative researches. In both of them Brainwave was seen in a very positive light. These researches were made by interviewing many of the families who participated in the Brainwave program and the majority of them (over 80%) showed that the program had had a positive impact on their child.
A collection of the development of the children was made in 2014. There were 599 children who participated in this and who had achieved developmental goals that they had not been able to achieve before. This has a direct impact on the everyday life of the children themselves and for their families and they can be perceived as life-altering achievements. The most common developmental steps were walking independently, crawling and creeping, using fork and knife, using toilet independently, sitting down independently, learning to roll over and taking eye contact for the first time.
Brainwave has been active for over 30 years and thus it is clear that the therapy programs have changed over the years. The latest addition is the Sensory integration. Another big developmental step is the use of technology. Laptops and iPads have established themselves as standard equipment in some of the programs and they help children to learn, to focus and to communicate. In addition, development in the efficiency of physical techniques and equipment, have made it possible for the children to become more independent as movers than it has been possible before.
When the families heard of a possibility to go to England to the Kerland Centre to receive an evaluation of their child and a home-based treatment program for home, many of them were very enthusiastic. At first the families had to travel to England with their disabled child a couple of times a year, which might have been problematic. So a thought came up to establish the Centre in Finland.
However, it took some time before the Centre was established in Finland. Pirkko Karvonen and documentary director Tarja Tallqvist visited the Kerland Centre in 1991 and after that the active planning to get the Centre in Finland was started. Several contacts and exchange of messages was required with the directors of the center at that time. We invited them to come to Finland for the negotiations, because they had negotiations going on at the same time with Sweden and Norway. The directors back then, Margaret Baker and Trevor England, came to Helsinki, Finland on January 20th 1992. We organized a meeting with the ministry of social and health affairs. The goal of that meeting was to get the official Finland also to take part in this. The result was, however, that the officials of social and health ministry didn’t get convinced. Establishing a foreign rehabilitation centre to Finland was a strange idea to them.