The name THOMAS was embroidered on the pillowcase between a train on one side and a ship on the other. I remember Thomas as he was lying in his baby carriage in his light blue homemade cowl. Thomas' granddad was working in the garden. He broke off a flowering twig from a cherry tree, planted it at the foot of the baby carriage, and went with us part of the way along the Millbrook. I wondered if my son would get to know my father, and if my father would get to know my son. In turn, this made me ask Dad to write a personal letter to Thomas as a gift for his baptism, a letter about his experiences, his values, and his outlook on life. Thomas got a beautiful and strong letter, which I later read aloud at Dad's funeral service. It became the first of a number of letters to Thomas.
Many parents think similar thoughts after the birth of their first child. They think about roots and belonging, about fate, about past and present, about the course of life, and about phases in life from cradle to coffin.
Thomas is part of a family, an important part of a family. He has three sisters and one brother and is included, thought about, and considered wherever he goes. When Thomas was 6 months old, I started writing a diary. In this way a life story is captured and a life documented for posterity. The meaning of writing has changed over the years. At first Thomas was just Thomas! However, our wish to support his development brought us into contact with “The System.”
The first professional person was a speech therapist. She taught us to make scrapbooks for Thomas—and we never stopped! She taught us the importance of eye contact, of beginning each new sentence with Thomas' name. She taught us how to point, how to visualize, how to stress expressions of emotion, and how to secure Thomas' experiences.
We took part in teaching Thomas a language, a so-called “technically correct language,” with fine pronunciation and a large vocabulary. However, he has considerable communication problems. Thomas cannot tell what happened 5 minutes ago. He cannot say if he feels cold or if he is hurt, nor can he tell tales about neglect or offending treatment. His long-term memory is astonishing, but it seldom manifests itself. Thomas holds many memories that he likes to share if he gets the chance, if somebody knows the situation or word that triggers his experience or knowledge. Without knowing Thomas' life story, you cannot evoke it and talk to him about it.
In 1969, when he was 3 years and 8 months old, Thomas got his first diagnosis, “Thomas is mentally retarded.” To us, it was a turning point as we encountered the National Service as a service system incapable of helping us. The lack of support, of guidance, and of respite care in our daily life with five children led to a feeling of powerlessness.
Incidentally, we contacted the Care Personnel High School. That contact carried with it an intense cooperation that was to last several years. The headmaster listened to us, asked us to observe our situation, and verbalize it. He made us realize that we were “in command,” that we had a good grasp of our situation. In return we heard about teaching methods, courses, books, and what was happening in other parts of the world.
Focusing on our own weekdays, on possibilities rather than wants, gave new meaning; but describing and documenting our life with Thomas—Thomas' life—was a defense mechanism as well: Verbalizing pleasures and sorrows that emerged from the confinement caused by complicated disabilities and stressful weekdays. I could not have tea with my neighbor or cultivate my own network!
Years passed. We learned to cooperate with all sorts of professional groups, to impart our attitude, our knowledge and experience, to adjust the course, and, at the same time, maintain our version and interpretation of the battle. According to our experience, parents, and, as a rare exception, other family members, are the only permanent support persons in the life of a child with severe mental handicaps. Professional support persons are qualitatively different from parents and family members. They are not tied to the person in need of support by family bonds; they are not permanent. Maintaining continuity in life is important to everyone. Writing a life story for someone who is unable to do it for himself may become a major task in life. No one should be tempted to connect this to a role as martyr or victim, as has been done, because it is meaningful to tamper with other people's superior knowledge and self-sufficiency. It is meaningful to show examples, move boundaries, and make life easier for people facing similar challenges.
It is meaningful to see the importance of individualized support—to focus on, develop, and improve support. It becomes important to see things in perspective, to change perspective. Shifting from individualizing to generalizing is a vital, mental exercise; it makes people flexible and prevents rigidity.
Parents who want influence or change on behalf of their offspring must override their individual situation and engage in generalizing, in speaking for other weak fellow human beings as well. They must take an interest in human rights, principles, values, and attitudes.
For most people—politicians, too—it is easier to put themselves into one other person's place than to understand a group of persons who indeed have the same diagnosis but are widely different. We must, for instance, present examples from Thomas' life in order to enable other people to individualize their support.
The ability to put oneself in another's place, to walk in someone else's shoes, is necessarily cultivated and sharpened in people with a child who lacks this faculty. Inspiration to work with Thomas' life story comes streaming to me every day by comparison with events in my own life. It is important to me to pause with old photos, to enjoy inherited objects with a sentimental value, to walk well-known paths, to be surrounded by objects with a history I know, to share memories with others—why should this be any less important to Thomas?
My own losses enable me to understand Thomas' losses: to lose one's parents, to close down one's childhood home, not being able to ask any more. The importance of The Life Time Perspective is not understood in earnest until you are the person at the end of the bench, about to fall off!
Because of limitations of space, I can only briefly mention my experiences from institutions and group homes. Thomas lived with us until he was 10, at which time the task became too hard. Thomas was hyperactive, he was not toilet trained, and he did not understand traffic. He needed constant help and supervision. His need of sleep at night was minimal, which aggravated the situation for us. Thomas then lived in a family with four other children. He moved to an institution for children and later, to another. In 1983, when he was 18, he moved to a newly established farm community for 15 young people with autism. Today Thomas is 36.
In retrospect, I grieve over many wasted possibilities for genuine cooperation about positive sides of the lives of the residents, of the principal characters. I grieve over waste of time at futile meetings, waste of energy, waste of paper, waste of resources because no responsible politicians or administrators were involved in tackling the challenges at floor level on weekdays and under the given circumstances. I grieve over the waste of photos—memories and experiences. I remember drawers in institutions and group homes filled with loose, disastrous pictures taken at 8-m distance, pictures with nothing written on them. No one knows where, what, or who it is. Unlabeled pictures and negatives can go directly into the wastebasket.
To put things in perspective, I often say about albums in institutions, “Everyone's album is no one's album.” At least, individualization of these photo albums could have been done within the common frame, the group. A simple script could have been made before the button was pressed; focus and the shortest possible distance could have been chosen for each situation. Often I also say, “There is a story behind each picture! Tell it! Pass it on to the family—the residents may be unable to do it themselves.”
As the years passed, there were good times, with cooperation between parents and responsible staff. However, the 1990s became a decade of economic austerity. Together with Norm Budgeting, the county introduced profile analyses. For each resident, the functional level in a number of fields was estimated and denoted by figures. By calculation these figures were reduced to one figure for each resident. By further calculation the residents' figures were reduced to one figure characterizing the group home in question in terms of its load on the county budget. Together, these figures for all living places in the county served as a scale according to which resources were distributed between them, allegedly as justly as possible. At Thomas' place of residence, the process led to staff being downsized by 25%.
The parents, who knew the residents best, were not asked to assist in connection with the profile analyses; their remarks were simply not taken into consideration. They found the method basically unacceptable and protested over the results. Later, but too late, errors were found in the staff allotments, and most of the resources were returned. But a valuable living environment had been wrecked.
In order to prove the necessity of better staffing, the principal introduced functional descriptions, performed by psychologists. In Thomas' case, they described “social and communicative dysfunctions, deviations in behavior of repetitive or narrowed stereotyped character, lack of coping-faculties, bizarre features” and much more. They focused on minuses and wants, written in an inhumane technical language. That Thomas at the time suffered badly from side effects of his medication for epilepsy did not make things better. We never heard or saw the functional description being utilized. It was never updated, corrected, nor used with a positive, educational purpose.
Thus, the profile analyses and the functional descriptions have become tragic, expensive piles of paper. They did not give a true picture of Thomas, of Thomas as we know him. Is the cup half empty or half full? Profile analyses and functional descriptions were an enormous provocation for us and an incentive to establish a positive basis for the support our son needs.
At first, we found his identity and continuity in his life to be key subjects. Working with them, we were led into the writing of Thomas' life story. I will try to describe what happened in practice.
Gradually, Thomas' image had become faded and woolly because the focus had been on negative features. On the home front, this change to the worse released an intense effort, consisting partly in the production of books that could have an informing effect on the staff and partly in writing letters to Thomas. When read to him, the books and the letters could tell the staff about his universe. It was an attempt at outbidding the mechanistic way of thinking, the reification—a counterweight to the profile analyses and the functional descriptions!
Many nice words have been used to describe attachment and loosening of bonds between parents and their children, but in a situation like this, parents do not get a chance to withdraw and be confident that the state of affairs is acceptable. The efforts of the family were intensified to the utmost to stand up to the focusing on profile analyses and functional descriptions as well as a medication failure and its devastating consequences, for Thomas as well as for the staff.
That meant our efforts to compensate for the failing care included more visits at Thomas' place, more home visits, more telephone calls, and more network activity. Responsible parents do not fight for their offspring only (i.e., fight or surrender). They have to engage in education, committees, etc. that are not only concerned with their child's welfare, but with others like him or her in similar circumstances.
A growing awareness of the fact that a person's personality is the sum of that person's experiences was my motivation to compose systematically what I had produced and saved for Thomas. In this way the Identity Book came into existence. It is overwhelming here to try and pass on what Thomas' Identity Book contains. A curriculum vitae is important not only for a university student. It is important for everyone to put events “where they belong” in the memory, in particular indeed for persons who are unable to speak for themselves, unable to look up information, or unable to correct others. Where did I live when? Which holiday adventures did I have? What were critical moments and events of extraordinary importance—birthday traditions, favorite places for Sunday family outings, favorite food, favorite clothes, favorite occupation, favorite music, favorite books, pet aversions, and so on? What does Thomas like, and what not? The subjects are innumerable, never ending, always changing—of course, the same dish should not be served 365 times a year, but we remember that Thomas did not like lettuce, and every day there was lettuce on his sandwiches brought to school from the institution, and every day at school the lettuce had to be picked off.
The Identity Book grows and grows, one might say in cooperation with Thomas as close observation made it easy to choose what interested him. The largest ring binder I could buy is full. It is indeed the process, not only the product, that matters. In between, Thomas profited by the process as books on special subjects have seen the light:
Thomas' Address Book. with photos of his network, family, and friends, with names, addresses, telephone numbers, and birthdays.
Thomas' Book About Emotions, with drawings of the Swedish picture book character Alfons Åberg's many faces used as illustrations in chapters about “I'm glad when ________,” “I'm sad when ________,” “I can get angry when ________,” “I'm afraid when ________.” A personal book about Thomas' likes and dislikes.
Thomas' Christmas Book, formed in his language to enable him to remember, understand, look forward to, share with his helpers. The Christmas traditions of our family are here secured and visualized as a basis for sharing memories with you, with staff. How do you celebrate Christmas? What do you remember from the past?
Thomas is unable to organize his albums, books, and games. Once there was a conflict each time staff would place or get clothes in his (locked) cupboard; in there Thomas saw, and consequently wanted, his own things. That made us purchase and modify what we named the Identity Chest of Drawers. It contains Thomas' personal things. A small, framed card on the wall tells the newcomer in which drawer to find photos, letters, tapes, and games, respectively.
Among games that have proved to be important to Thomas, I can mention his Network Memory: two photos of each of the persons Thomas knows—partly his family and friends, partly his friends at his own group home, with and without diagnosis. The pictures are laminated portraits: reduced color-laser prints mounted in self-laminating cards, a Danish 3L product. Thomas knows all the names and is happy to recognize persons and to find “the other one.”
Thomas' When I Was a Child—Memory contains favorite pictures from his childhood and youth. Persons, places, clothes, occasions, and seasons have a meaning as basis for conversation.
Among the other games, I will mention the Political Memory, which contains pictures of the members of government well known to Thomas from TV, cut from two copies of our daily newspaper, the Stamp Memory cut from two copies of brochures from the Post and Telegraph Museum, glued on mailbox-red cardboard. Thomas has received a letter every week for the last 26 years, so everything connected with mail has his interest, a Picture Book Memory, with well-known figures from Thomas' favorite picture books: Linnea, Amalie, Findus, Alfons Åberg, Peter Rabbit, Harry the Dirty Dog.
These games and pictures have been a great success: It is Thomas who knows who is who, and so he is the one to teach staff! Name, address, symbol, date, year, and a few cues about the story behind the picture are on the back of each one. Norwegian Professor Tordis Ørjasæter has observed that the characters of children's books assume an extra meaning for children/adolescents with a disability. They become a kind of friend, some substitute for the friends the child or youngster is unable to make in real life.
The last memory game I have cut and pasted is made of photocopies of Illustrations for Children's Songs that Thomas knows and his dad played and sang when Thomas was a child. No one else could make it, and we parents feel time is running out and feel the importance of saving those songs that to all of us are close to our hearts. Old people return to childhood memories.
We have tape-recorded Thomas' favorite picture books. In this way Dad's and Mom's voices are saved for the future. The tapes build bridges between visits. They fill in time that would otherwise have been spent alone. Dad playing the piano and Mum singing goodnight songs are caught on tape too.
At the same time we try to be up to date on books for young people who cannot read. The need is huge! Cooperation is taking place between the Scandinavian countries and between parents, staff, artists, and publishers.
Our correspondence with Thomas has been extensive. We believe that all people love to get letters. It is a treat, and a meaningful feedback in itself, to watch Thomas handling his cards, his pictures, his photos, to hear him talk quietly about the pictures, the persons, and the memories they cover. To comply with his wish, special cards are read aloud again and again. We watch his associations, his comparing his picture with “the same” on his wall. We hear him by means of the picture, and perhaps with a single word that only we can recognize, refer to a ride in a horse-drawn carriage in the Deer Park.
In Denmark, it is illegal to withhold mail from the addressee, so by sending letters we can imagine contact, communication, and a cozy break as repeated assurances for Thomas. Personal pictures evoke emotions.
Thomas has great fun from a basket with personal magnets, one at his home, one at our home. Using photos, my photo dealer made badges. I removed the needle with a pair of pliers and glued a small magnet on the back instead. Then, the Photo–Magnet–Badge was finished. It started with portraits, but now it includes activities, too. It turned out (blessed be the staff person who told me!) that Thomas could indicate from the picture his experience to the attentive support person. In his room, he uses two magnet boards; with us, the refrigerator, freezer, radiator, and cake boxes serve the purpose! Pictures of Thomas' new co-residents were put on magnets before he moved in. He learned their names and got acquainted with them before he even met them.
The Identity Book grows steadily. Realizing that no support person will ever be able to or get the opportunity to acquaint himself or herself with the book as a whole, I challenged myself to try and produce a Life Board for Thomas, to concentrate the 120 pages of the Identity Book on a single sheet (see Figure 1). Although it was hard work, the board proved worthwhile and of great importance! I had to consider seriously which categories to choose, which words and expressions to use. The categories may perhaps be different from person to person. A Life Board is never finished as long as the person lives, so the various editions should be dated.
The idea was that the Life Board should be framed and hung visibly in some much frequented place—perhaps in front of the chair in which Thomas is helped with shaving. The Life Board is easy to see and read, easy to mail, puts people on the track, and spares Thomas many defeats when staff persons either over- or underestimate his capability and his knowledge.
I have heard that something similar to a Life Board was looked for when a 54-year-old newcomer moved into a residence for adults; nothing was known about this individual! The same applies when a person late in life is afflicted by dementia and does not remember his or her past, or, perhaps is able to recall, but not reproduce it. In such cases the staff wish to know what Mr. Hansen used to do earlier in his life. If you know that he was a sailor or a craftsman, it is easier to find episodes or songs that can motivate him. It is easier for the staff members to engage in the task when they see the human being before the diagnosis.
In 1998, we decided to find an alternative to the farm community. We tried to sketch “the ideal home” for Thomas and visited group homes all over the country. One place in particular, a group home for 6 young people with autism, appealed to us; chance would have it that a vacancy emerged there and Thomas was invited to move in.
In a situation of “removal by necessity” like this, the need for life story material becomes even more important. A person with grave communication disabilities must be prepared carefully for radical changes. How do you transfer that person's good memories of the past, how do you support the personality in question in order to obtain continuity and yet leave room for new development, new challenges and initiatives, new memories?
Residents have ties to two environments: They have roots in their childhood home as well as in their present residence. One root is permanent, the other is exchanged. Society demands that people who have severe difficulties adjusting themselves to change and to other people must cope with two homes, two sets of habits, two sets of expectations, and two sets of helpers. In the case of transfer to a new home, they have to cope with half of them being shifted.
When a new person is introduced into a group, the balance is altered. How do you prepare the staff to get to know “a Thomas”? How do you inform them about Thomas to enable them, in turn, to support his process of reorientation? Before Thomas' recent removal, we experienced the value of passing on detailed, down-to-earth, and thoroughly prepared descriptions.
Before the move we were busy forming an impression of the new place. We took pictures of the buildings inside and outside, Thomas' room, his window, his view. We took portraits of the members of the staff and of the residents. We tried to remember names. We made photo albums for Thomas. We took him on confidence visits. We made photo-magnets to acquaint Thomas with faces and names. Again, parents were the connecting element who provided the continuity in Thomas' life.
It is a problem that The Identity Book is under constant change and not a guide or a handbook. It exists as original only and will remain unknown to most people. (Original pictures and other information that cannot be reconstructed are important materials Thomas cannot be left alone with). In the future, siblings, guardian, and contact person as well may need the book.
Thomas' Life Book confirms that, at the present stage of development, initiatives to strengthen family ties are difficult to fit into a residence. Such initiatives are not easily received with understanding from the staff, and, traditionally, they are not ascribed the weight they deserve by the management. The importance of strengthening the ties of young people to their family is underestimated at all levels. The same applies to peace and quiet one-on-one with the contact person and to staff visits to the parents' home.
Interest organizations and advocacy groups must take up the task of convincing politicians at all levels to set aside the necessary resources to create appropriate records, collections, and documents that reflect the identity of the weakest residents. The subject of life story work must be made part of the education and in-service training of direct-care staff persons. This education must include discussions about attitude and outlook on life, communication with the individual, the construction of relation through listening, not judging, and the ability to react with sensitivity to attempts at communication. Respect must be fostered and encouraged for the dignity of all members of the family and not least for its members with the severest disabilities, who are unable to look up and visit the family and unable to express their wants and need for contact.
Life story work must be made part of the statutory, individual plans for action and be made part of residential staff's weekly schedule. From personal, long-term experience, I maintain that life story work prevents frustration, depression, and violence.
Life story work is an important, but overlooked, instrument
Through cooperation between staff and family about memories, closer relations are created. For the resident, communication is facilitated because emotions are involved. A better picture of self, a stronger identity is also created. Using the life story increases motivation for everybody.
Generally, it is difficult to maintain contact with siblings. It is important to point out that in the contact with sisters and brothers, quality is more important than quantity. Contacts between residences and siblings are fragile. Initiative, support, and maintenance from the residences are missing. The weak resident cannot maintain the contacts, and in all relations reciprocity is the code word.
A report on elderly persons with mental retardation contained the following:
Supposedly, people with learning disabilities [mental retardation] have a larger need for family contact than the rest of the population, because traditionally the learning disabled resident does not start a family. In the course of the day the resident may have many contacts with members of the staff, but these contacts cannot be substitutes for family, or private, contacts. To be of value, contacts must be honest. On this background it is important for group homes to strengthen contacts to the family.
Securing the life story is a necessary precondition for quality of life in the latter part of life. Life story work enables all support persons, family as well as staff, to cooperate. They must meet around subjects that warm, motivate, and give life as well as substance to a totally different degree than most other kinds of support and occupations.
An illustrated version of an earlier draft of this article can be found on the author's homepage: http://www.gugu.dk.
Author: Gugu Kristoffersen, MA, Parent, Høyensgade 27, DK-2100 Copenhagen Ø, Denmark, Europe. firstname.lastname@example.org