What took you so long?
This film is an effort to tell the story of someone’s complicated and difficult life in the space of a few minutes. We are very conscious of the dangers of over simplification but we are willing to take the risk because our son’s quality of life is so much improved as a result of the work that has been done. However, this work has been very difficult and has taken many years of searching.
Caleb was born in Castlebar in 1976. He was diagnosed as autistic when he was about 5 and had no language you could recognise, but he did learn over 100 signs. He went to a school for the moderately handicapped which involved a 27 mile trip each way. After a period of difficult behaviour and considerable resistance to getting on the bus every morning, we pulled him out.
Western Care eventually set up a service for him run by two temporary staff. They straightened him out. They were his saviours. Soon other people began to arrive and the number of temporary staff increased to 4. Pressures continued to grow on the service as it expanded and over time Caleb’s challenging behaviour intensified. He was referred to a psychiatrist who diagnosed bi-polar disorder. When Western Care had its accreditation with the Council of Quality and Leadership in 2004, Caleb scored the lowest of the group.
A support group was set up to focus on improving things for Caleb. A significant step for us was participation in the Michael Kendrick Individualised Service Design Workshop. This engagement led us to develop a proposal for a “good life” for Caleb. The proposal had the following main elements: -
- Caleb is at the centre and we will follow where he takes us. Listen to Caleb. Caleb must be in control.
- Attend to physical health issues.
- Develop a new relationship between ourselves as parents and Western Care leading to a new relationship between Caleb and Western Care.
- Reduce the number of staff working with Caleb.
- Look at the possibility of Caleb having his own place to live.
- Investigate work for Caleb based on his interests.
A “Circle of Support” was established and it has been meeting regularly for the last number of years. We have succeeded in finding Caleb a house to rent. He stays in his house four nights a week with two staff alternating to support him. In his house he is in control. He looks after the house, sweeping, cleaning, tidying, helps with shopping, meals, etc. The number of staff working with him has decreased from 20 to essentially 4 and he has clearly chosen these people. They love working with him because he is a changed man whose abilities and potential are being realised. He is living a new life and people look on him differently. Caleb’s network of relationships with people in the community has developed extensively and has become one of the Project’s greatest achievements. He sees himself differently and looks better physically. An upwards spiral is being built and needless to say, incidents have gone from sky high to negligible. It’s a transformation. However, we continue to search. The moment we stop, Caleb will remind us that this is a continuing story!
Chris and Xanthe Pratt