Catherine’s Legacy: social communication development for individuals with profound learning difficulties and fragile life expectancies

Kellett, M. (2005) British Journal of Special Education, 32 (3), 116 – 121.

This paper summarises case study evidence of how an 11-year-old girl’s quality of life was transformed by the adoption of Intensive Interaction. Despite the objective research perspective of such a paper, published as it was in such a highly regarded academic journal, what emerges is a very emotive and powerful story about one young girl’s dramatic social development in the last few months of her short life.

In this paper Dr Kellett, of the Children’s Research Centre at the Open University, also explores the methodological and ethical considerations with respect to research with children with the most profound disabilities and fragile life expectancies, and the implications of a person’s life experiences have for policy and practice in this area.

The Participant: Catherine, the focus of this paper, was 11 years old and at home with her family. She had profound learning disabilities compounded by quadriplegia, perceptual impairments and severe and frequent muscle spasms and seizures. She was physically very frail and suffered frequent infections and illnesses.

The Method: prior to the Intensive Interaction intervention at her school, Catherine was perceived by staff as being entirely passive, making no eye contact or vocalisations. Once the Intensive Interaction sessions commenced and a limited amount of video footage was gathered and analysed, dramatic developments were observed in two particular areas, those of eye contact and the ability to attend to joint focus activities.

The Results: Catherine’s engagement in eye contact was seen by the researchers as ‘a tremendously important development’ as it had changed from ‘zero incidences’ prior to the use of Intensive Interaction. Also noted were new behaviours that developed shortly before Catherine died, one being ‘turn-taking’ vocalisations using ‘tutting’ sounds based around Catherine constantly blowing saliva bubbles, which developed into a ‘raspberry blowing’ game, and it was during this activity that staff felt they were ‘really connecting’ with her. The video on which the observations were based are described as ‘alive with smiles, eye contact, warm physical interaction and the sound of Catherine using her tongue in a ‘tutting’ sound as part of a playful imitative game’.

Also reported were the development of similar interactive communication within Catherine’s family and the generalisation of new found communication outside of the research scenario. Catherine’s mother started to use the approach after watching some of the research sessions, and was reported to particularly enjoy the ‘tutting’ and ‘bubble blowing’ games with Catherine. During these times Catherine’s mother was happily ‘rewarded with smiles and eye contact’ and she also described the joy of the family in being able to finally connect with Catherine. She also very movingly stated that the ‘last few months were their happiest times together’.

Some Discussion: As Dr Kellett concludes, Catherine’s study ‘adds to our knowledge and understanding of communication development for individuals who are similarly frail and profoundly impaired’, and she goes on to state that ‘Catherine is no longer with us but she has left a rich legacy behind her’.

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