MENTAL HANDICAP VOL. 12 JUNE 1984

Helping children with handicaps and their adoptive parents: a clinical psychologist’s contribution Introduction

Parents for Children is an adoption agency which specialises in finding permanent substitute families for children who are disturbed or handicapped and who are living in residential care. Experience had led the Parents for Children team to feel that there was a need to identify problem behaviours overlooked by residential care staff before the children were placed for adoption. The team was also interested in devising strategies that adoptive parents could “adopt” with the child for dealing with behaviour problems.

I worked for the agency for a year, during which I devised a four stage plan of intervention.

Stage 1: an assessment of the child’s general level of functioning in the residential institution and in school. Stage 2: definition of behaviours causing concern to the child or his caregivers, and behaviours which were significantly delayed and required systematic teaching. Stage 3: the development of behaviour modification strategies to achieve identified “target” behaviours, in the pre-placement period. Stage 4: the development of a service for adoptive parents, once a child was placed in the new family, with intervention based on what had been learnt prior to placement about the child’s needs and meeting those needs. Recent studies have shown that home based interventions are

valued by the parents of children with handicaps, especially when parents work in partnership with professionals. I planned to offer such a service during the child’s transition from institutional care to family life. I intended to work in cooperation with the people caring for the child, sharing my skills with them and facilitating an exchange of skills between residential workers and prospective adoptive parents.

Examples of the plan in action This paper describes my approach with two children and

discusses issues arising from my work with their adoptive parents.

MIKE Mike was four years old. He attended a day school for children

with severe learning difficulties. He had had tuberculous meningitis at two years resulting in left hemiplegia, delayed language skills, and mental handicap. He was overactive, disruptive, manipulative, and easily distracted. He had been in care for 18 months when I met him. He had a habit of turning on water taps, turning off the oven, touching plugs, and interrupting other children’s games.

From observation in the residential setting, it was deduced that these behaviours were successful devices to get staff attention. Mike lacked alternative and more positive means, since he could not speak clearly, nor play constructively with others. The staff agreed to have a daily play session just for Mike and to try to ignore his attention-seeking behaviour. Dangerous or destructive behaviours were not ignored, however. Instead, he was told off sharply and removed from the source of danger

IRENE SCLARE is a Senior Clinical Psychologist at the London Hospital, Department of Child Psychiatry, Whitechapel, London, El .

Irene Sclare

without excitement or iuss. The programme was a success. Mike made strides in his

learning. He began to play constructively and to use more words spontaneously. He was more amenable and responsive, and staff gradually learned not to run after him when he ran from the room or moved towards forbidden objects. He gradually reduced the frequency of these behaviours. He remained a demanding child, but was less difficult to control. Just before placement in his new family, he frequently played constructively on his own and only annoyed other children when all the attention went their way.

The staff felt sufficiently enthusiastic about their success in changing Mike’s behaviour to begin a similar programme with another very active three-year-old. They also felt able to help Mike’s adoptive mother, by giving her practical suggestions about how to handle his boisterous behaviour .

I visited Mike’s adoptive mother a month after he was placed with her. The Parents for Children worker and I were impressed by her ability to handle Mike firmly, consistently, and lovingly. He clearly appreciated being at home on his own with her and had not developed any negative behaviours to get her attention. Mike’s behaviour problems had decreased dramatically. In particular, he no longer woke at 6.00am each morning now that he lived in a quiet rural setting.

Mike’s adoptive mother felt confident that she could request help from me should Mike become difficult in the future. She construed his active, demanding behaviour as a positive aspect of his personality, and was willing to give him much more attention than he had experienced in the children’s home. She said she valued the chance to talk with me and share her delight in his progress, but she did not see herself as being in need of direct practical help at this stage.

NICOLA Nicola, aged four, was developmentally delayed. She was

blind, diabetic, and epileptic following an operation to remove a malignant tumour at the base of the brain. She displayed stereotyped behaviour (such as head banging and chewing her clothes to threads). Her speech and play were very limited and she was unable to walk alone.

I saw her twice before she moved from a residential home to live with her new family. I carried out a formal assessment to establish her level of functioning and set learning goals. I also observed a variety of stereotyped behaviours which appeared to be a means of self-stimulation. She had been living in a residential home for a year. She had received no consistent individual teaching and staff were uncertain about her actual level of skill in most areas. I found her to be at about a two-year- old level in mobility and personal self-help skills, and more delayed in play and language skills. She had little idea of meaningful play and tended to cast toys around after brief exploration.

I met Nicola’s new parents, described to them the results of my assessment, and devised a series of short tasks to encourage Nicola’s skill in play, mobility, and language. Nicola made quick progress in playing and in mobility, and her adoptive parents began to work on encouraging her to make sounds. We also planned ways of eliminating clothes chewing and head banging, and we planned a toilet training programme.

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MENTAL HANDICAP VOL. 12 JUNE 1984

I talked with Nicola’s new teacher about ways of encouraging play and of devising an approach consistent with that of her parents. We met twice and shared ideas about immediate and long-term goals in teaching Nicola. In contrast, Nicola’s new parents were slow to begin the intensive structured teaching programme which we had planned. Instead, they told me that they felt a strong desire to “let her be”, without trying to change her before she, and possibly they, were ready. This delay, the “getting to know Nicola” phase, was important to them. After several visits they began to show more interest in using structured teaching methods.

Nicola developed rapidly and responded well to teaching sessions at home and at school. She had made huge strides, literally. She was walking, climbing with ease, and manoeuvring herself around the house. She would play happily with toys for 10 minutes or so, manipulating parts of objects, exploring textures, and assembling boxes and their lids, though she was still very limited in language skills.

This family made me aware of the importance of an attachment phase in implementing intervention within the “new” family group.

Discussion Each child I worked with during my time with the agency

made significant gains and positive steps towards change. Residential staff became skilled in developing strategies to bring about change, and we identified important strengths and deficits in each of the children.

However, I had to hold this knowledge and understanding “in abeyance”. Each family required a period of time with their adopted child when they received no direct intervention or instructions. During this phase it seems that they were getting to know the child, and construing the child as lovable and acceptable before identifying special needs. The psychologist in this situation must allow the adoptive parents to define for themselves a child’s problem behaviours, rather than instructing them to carry out strategies which were designed for residential care staff.

Extending the clinical psychologist’s role from a residential to a family setting meant changing the focus and changing tasks. I found myself being asked initially to validate the parents as having the capacity to manage the child’s behaviour, rather than asking them to implement my strategies. Later, the parents sought and valued more direct help in dealing with difficulties once they had experienced them.

Who introduces the psychologist? What does the psychologist do with personal observations and perceptions of the child? When does the psychologist meet the family? Who defines the problems? All these remain central pre-occupations for me in working with children just before and just after transition to family life. It was relatively straightforward to mobilise staff to try to change children just before they found a new family. It was more complex to hand over skills to newly adoptive parents. We thought we knew the problems and the best ways of dealing with them, yet we had to allow the parents to discover their own techniques and wait for them to request help when they were ready.

Reflective groups: their value to parents of children with handicaps

Working with a group of young children with mental handicaps can be a cost effective use of resources and can, potentially fulfil a variety of needs. Such groups have been run in a number of ways, from being purely psychotherapeutic to purely educational. Studies looking at the relative effectiveness of different approaches generally conclude that a behavioural approach creates more positive change in the children and gives greater satisfaction to the parents. It is possible that the different approaches meet different needs: for example, a behavioural group might help parents to develop confidence and competence; whereas a reflective group might enable them to meet and share feelings with other parents in similar situations to their own. It is, however, difficult to evaluate the success of a reflective group.

This paper concerns my experience of setting up a reflective group. It was not a success, in that it finished prematurely after only five sessions; but it was an experience which I feel highlights many of the difficulties of working effectively in this area.

Starting a reflective group Whilst engaged in research with

children who were mentally handicapped I became aware of a tremendous sense of isolation and a great need to talk in the parents I met. I therefore suggested setting up a group, the primary aim of which would be to reduce the isolation. I felt that a flexible approach was important, to enable the parents to decide for themselves how to use the group, but that if required I would offer a structure, such as bringing in speakers. The idea was supported by the District Handicap Team (DHTI and by a group of mothers who attended a regular occupational therapy and physiotherapy session.

Setting up the group was a remarkably time-consuming process. I had to find a co-worker, a supervisor, a setting, baby- sitting facilities, and a sample of parents. My co-worker was a female paediatrician not connected with the DHT. A 12-session group, with weekly meetings of 1 %-2 hours, was the most we could offer. The meetings took place in the evenings to enable fathers as well as mothers to attend. Recruitment was limited to parents of pre- school children as they seemed the most isolated, not having the support a school could offer. We also felt that a fairly homogeneous group, with problems and

I ” experiences in common, would work best.

AMANDA STROUD is a Research Psychologist at the London Hospital Medical College, Turner Street, London.

Amanda Stroud

Since the extent of interest such a group might provoke was unknown, we decided to contact a number of parents initially and increase the sample if necessary.

We visited 22 families referred by the DHT. We were careful to portray the group as available if wanted, but did not put any pressure on them to attend. Of the families, 15 expressed interest, and this seemed sufficient support to start the group. However, only eight parents attended the first meeting and, by the fifth, numbers were so low and erratic that it did not seem viable to continue.

Nevertheless, in many ways the sessions were used constructively: meetings were almost always on task; the parents were supportive of each other, and information on the use of services was exchanged. The parents themselves tried to get more people along, and two couples expressed interest in a possible future group. However, the issue of numbers was an important one for all concerned.

Reasons for failure Despite a core of 5 or 6 attenders,

membership changed continually, and a sense of group cohesiveness and identity could not develop. There seemed to be

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