CASE 1

We are now going to illustrate our work by telling you about some families we have met.

The first of them is Lisa and her parents.  Lisa came to us when she was 13 years old.  She has some kind of retina disease, and during a few months her vision had grown worse very fast and in a very dramatic way. Her vision had always been slightly impaired but it had suddenly changed very much for the worse.

Lisa and her family were sent to us in the Supporting Team in the very acute

phase  when her vision had suddenly collapsed. The situation

around Lisa was very chaotic, many steps were already taken, started or

planned and at school everything around her was almost in a panic. There were meetings and a lot of planning with many experts involved.  All these things were good, of course, but Lisa and her parents had not had the chance to keep up in this process.  It was very difficult for Lisa, and maybe still more difficult for her parents to understand that she was now much more visually impaired than they were used to.  It caused many different emotional reactions.

Most of the changes around Lisa concerned her school work and technical aid.  When Lisa and her family came to us, we met a father and a mother in crisis, and a girl who had barely begun to understand what was going on in her life.  We felt that people around her were acting in a very confused way, that they were worried about her schoolwork and many people had a lot of ideas about how to support her.  (Something was established during this period which became significant in her case: that everybody were talking over her head, that she was objectified to the extent that some people thought that everybody but Lisa herself knew best what she could see and what she could not see. Because of this she refused every kind of support and technical aid and thus many people looked upon her almost as if she was mentally retarded.)

During the first session we tried to get some order in the chaotic situation and to make the parents understand that everything must not necessarily be done in a week or two,  that there was plenty of time.   Especially Lisas mother was in a very nervous state.  Lisa herself seemed cool, but at the same time it was like the whole thing did not concern her at all.

At the beginning we met the family frequently, once a week.  We also

contacted other professionals who support visually impaired children in

Sweden so that the efforts to help this girl and her family were coordinated. 

Of course Lisa always participated at these meetings, sometimes with her

mother and sometimes with her father, sometimes with both parents.

We always made a point of talking to Lisa, not over her head, and of taking her point of view as the starting-point for our meetings. We turned her

unwillingness to use technical aid into a normal thing by referring to other

teenagers who had reacted in the same way as Lisa  and we told her that it was she and nobody else who decided how much technical aid she was going to have. That way we gained Lisas confidence from the beginning.

The support given to this family has varied through the years.  We have had contact with them in different ways.  During quite a long time Lisa and her mother came to see us.  From the start we used a certain model for the sessions: we talked with her mother, not about Lisa but about our experiences with other visually impaired children.  Lisa usually did not want to say anything.  But she always wanted to participate.

After many sessions like that Lisa suddenly started to talk.  And not only with us, but with other people as well, at school and many other places.  She started to communicate her thoughts, and she had now found a way to express herself. Together with the family we came to the decision that Lisa was going to meet the psychologist and her mother was going to meet the counsellor. It went on like that during a few years, and we still meet Lisa and her parents, even though it is not as often as before.  Lisa takes part in our teenage group which we are going to talk about later on.

Lisa really had a very difficult time at school during many years.  People around her were totally unwilling to understand her situation.  At the same time various types of measures were taken in order to support her. One person (who was supposed to support her) told her how to adjust her computer although Lisa told this person that she could not see anything when the computer was adjusted that way. The person was very hurt when Lisa tried to tell her that she did not want this kind of support.  Lisa was told not to wear a cap in class, although she really needed it badly since she is very sensitive to light.  Etc etc.

Lisa was regarded as a trouble-maker, and also treated as one.  People at school did not understand that her behaviour sometimes had to do with her impaired vision and that sometimes she just behaved like a normal teenager.  She was not allowed to show any signs of immaturity, which would be quite normal for a person of her age.  Everybody around her demanded that she should always behave like a grown up, that she should be clever and reasonable just because she was visually impaired  and had many difficulties.  The whole situation was rather absurd.

Lisa has left the old school and now goes to high school.  It is a very big change for her.  She is treated with respect and understanding by her new teachers and classmates.  Now she uses a lot of technical aid all the time.

It has been a very interesting process to follow Lisa.  During these years she has become a strong and independent young woman.  Her self confidence has increased.  She has met other young people who are visually impaired.  At first she did not want to meet them, she just wanted to be a ”normal” girl, but when she met them she seemed very happy about it.  She has a lot of friends now, both fully sighted and friends who are blind or have various kinds of visual impairment. She has found her own identity.  She knows what she can manage herself, and when she needs support.

I think the most important thing that Lisa got from us was that we acknowledged her and her experiences.  We acted as her witnesses and told her that what she went through was a very hard thing, that the way people at school treated her was not appropriate and that she ought to have been treated quite differently.  We also went to school meetings to learn how things worked for Lisa at school.