Foredrag: TRS and AMC- a lifespan prospective
Under kan du lese foredraget som leder i AMC-foreningen, Berit Evensen, holdt i forbindelse med AMC-konferansen i Manchester.
The national association of AMC was founded in the autumn of 1987 after an initiative from fifteen grown-up AMC persons. It all happened merely by coincidence. Two persons with AMC met at a conference in Oslo. Neither of them knew other persons with the AMC diagnosis. One said to the other: "If we are so few, we can start a small but exclusive association" A journalist overheard the conversation and got interested. He wrote an article about these "strange" people with the unknown diagnosis AMC. Shortly after both letters and phone calls came with the same sincere question: "Am I not alone in this world - can we meet?" That was the start of our association. I must mention that we are affiliated to the Norwegian Organization for Disabled Persons - NHF.
Since the start the number of members has increased to about hundred and four members, of whom nearly sixty has the AMC diagnosis. TRS has by now recorded over a hundred persons with AMC. Fifty of them are under twenty years of age, and a very few are over sixty, even though, as far as we know, persons with AMC do not have a shorter lifetime than the average man or woman.
Our primary task was to work for a centre of ability, and only 5 years after we became part of TRS - a miracle had happened.
My mission here is to give you a short introduction to the TRS philosophy and practical work on the important aim - "TRS and AMC - A life span prospective".
TRS operates with a life span perspective, a holistic approach, which ensures the users follow-up from cradle to grave.
Holistic in the sense of a doctrine of preventive and therapeutic medicine that emphasizes the necessity of looking at the whole person--his body, mind, emotions, and environment--rather than at an isolated function.
One of TRS's concerns is to develop models for the co-ordination of services in all aspects of life for the seven targeted groups.
The life span perspective can for instance be reflected through organizing stays for groups of the same age. Older users who can then narrate their experiences through life to younger users are important lecturers on such courses. Stays can also be organized individually when a user needs the services from TRS.
Some of the strongest critics from other professions in Public Health Care have accused TRS, in the early nineties, just for emphasizing the life span perspective. In addition it has also been criticized that doctors without specialised knowledge are responsible for the treatment of small children. In this context it is therefore interesting to observe that the holistic approach now is getting more and more accepted. It is also important to remember that TRS is a centre for knowledge, research and the spreading of information. TRS does not replace other public offers, but works as a supplement.
What is special about TRS is that we can get in touch directly. We do not have to fight our way through primary doctors or other professions. Equality is important, so all the users in the country get the same offers.
TRS does not do diagnosing work. That is the responsibility of the public health services.
The life span philosophy is important because it requires that users, their families and the professionals have ideas on how the child can use its gifts through life. Good planning is of little use if a good start ends there and the planning is not taken into consideration when the child grows up. Plans for treatment and routines for following up the matter, are therefore crucial when planning a life span.
Most literature on AMC is written by pediatricians. TRS has the unique possibility to meet and see persons of all ages with AMC - a situation from which they can gain new knowledge on the diagnosis. And I guess it is easier for them to give correct information and prognosis. I do not think that a doctor who maybe has seen three persons with AMC during his practice has the same level of learning.
So what is TRS doing for the AMC group?
It is quite simple. You can get in touch with TRS when you have a need for information, advice and/or help related to your AMC and your life situation.
Though I must say: In Norway, and in Sweden too, the social security network is well developed - in comparison with many other countries. So we have to contact the local health care in questions concerning common health, physical trading, helping remedies and so on.
Let me mention some examples:
As soon as an AMC baby is born and the birth is reported, TRS contacts the hospital and/or the family. The baby, its parents and brothers and sisters are invited to a stay at TRS. If possible together with other families with an AMC child. It is important to build relations at an early stage.
The evaluations of these stays have been unambiguously positive, and the personnel has succeeded very well with this work.
When the children are getting a little older - around ten years old - TRS offers stays for the children where they for instance are using drama, music, motions and various use of design materials to give their expressions to thoughts and feelings. One goal is that the child gets the possibility to learn more about ways to strengthen its identity and reflect over prospects in life. Such activities can also be made use of in the handling of traumatic experiences. An important task is, when children with AMC are gathered, to let them meet youth and grown-ups with AMC who can function as models of character. You must focus on talent and potentialities and not on the disabilities. The children must get a life to fight for, not a body to struggle against.
For youngsters between fifteen and twenty the subjects can be choices in fields like school/education, profession/work, how to organise independent living in a new home and learning to drive a car (which can be technically very advanced). These are some of the most time-consuming tasks. Other questions can be about making a family - how can I function as a sex partner? Can I carry a child? And so forth.
TRS is also arranging summer stays for youngsters and giving them new challenges and possibilities to exploit their borders. Those stays are very popular with bathing, sailing, water-skiing and other activities.
Persons with AMC who have to stop working have often a need to defray the expenses, which the disability implies, and accept their own level to get a good life. TRS can help to work out these problems.
TRS has met elderly persons with AMC whose loss of function cannot alone be explained as loss of strength. It implies a worsening of these person's conditions. Users will in such a situation take advantage of TRS's capacity to make a new analysis of their capacities, and be guided about new ways of functioning - for instance alternative activities.
My conclusion is clear. The life span prospective is the most important part of TRS's philosophy.
Thank you.
Berit Evensen