Keith

Digital camera and laptop help get behaviour into focus

The program of activities is carefully devised by his family and reviewed monthly by the support agency providing Keith’s care. Activities are chosen based on observation of Keith’s current skills, and on decisions about what skills would be most useful to gain to aid his independence. Keith’s achievements are noted and the activity plan updated regularly. As part of this plan, Keith has attended eight separate days at his local college, and this has been a big success. He will attend eight more days from October 2011 to March 2012, when he will graduate with a Certificate in Contemporary Living.

When we spoke to Keith’s mum, Catherine, Keith had the previous evening made dinner for his family. With support, he had bought and cooked the meat and prepared and cooked the vegetables.

Keith carries a digital camera around with him, and he and his family find this a wonderful aid to communication, helping Keith to express what he wants to say and providing an immediate basis on which to initiate conversation. Keith also saved for, and bought, his own laptop. He has recently participated in a local pilot program to make his own “digital biography”, independently choosing the pictures and music, typing words with assistance, and including details such as which recipes he likes to cook.

Keith’s family aims to provide him with as many opportunities for social interaction as possible, and social situations are also built into his activity program. Keith has built up a great rapport with people in the local community. He also has other friends with learning disabilities he has met through different activities such as art classes. Keith speaks to one of his friends on the phone every week, and she recently came to stay with him.

Issues in early adulthood

The period after Keith left school, and started at an adult day service, was extremely difficult for him and his family. When he was due to attend the day service, Keith would refuse to come out of his room in the morning, putting his bed across the door.The change in transport in itself proved tough – there were major problems with Keith getting to the day service on the bus, and Catherine describes how Keith would “freeze with fear” when he saw it coming.
With hindsight, Catherine feels that Keith wasn’t given the preparation he needed to cope with the changes that were coming up, and she feels that, in this respect, the system failed him.

Keith thrives on predictable routines and definite schedules. Unexpected events can cause big problems, with difficult behaviours such as holding tight to objects or people and not letting go when asked. Often associated with unexpected change, these behaviours also occur more generally in situations when Keith is frightened or asked to do something he doesn’t want to do.

Keith’s family feel that, when they realised there was nothing else on offer other than the day service, this was the start of a difficult and important journey; Catherine describes it as an initially very bleak time. A breakthrough for the family was when Keith had a Positive Behaviour Assessment, which helped identify triggers for Keith’s anxiety, and some possible factors contributing to his holding behav- iours. In addition, big improvements occurred when Keith was given his digital camera, and began to use it to interact so effectively. His laptop has also given him new ways to interact with people. Keith’s family was initially worried about the class in which Keith enrolled to make his digital biography, because he did not know the 11 other participants, or the tutors. However, Keith appears to have become less socially anxious recently, and has thoroughly enjoyed the course; he and his family are extremely proud of the outcome. A further break- through was getting Keith his own car: care staff can now drive Keith to wherever they need to go without the stresses and unpredictability of public transport.

Keith would like, one day, to have the family garage converted so he could have it as his own home, and his parents are keen that this should happen in the future. Keith has also expressed an interest in working, and his family hopes that a job, perhaps doing some basic chores in a care environment, might become accessible to him.

This is not to say that Keith doesn’t still experience problems, especially when things are unpredictable. There were difficulties over the summer when new and different staff were coming to work with him, and Keith’s holding behaviours increased. However, his family has increasingly developed ways to minimise these (partly based on the outcomes of the Positive Behaviour Assessment). On next year’s calendar, Catherine is already marking out the summer as a potentially difficult time for him, and plans to prepare Keith for this over the course of the year. She also feels that they are learning to negotiate the amount of information Keith needs in advance of events, in order to prepare him without causing him unnecessary anxiety in the lead-up.