RHANIAD rpimn GVMREIG STRATEGAETH CYMRU GYFAN

WELSH DIVISION

ALL WALES STRATEGY

Family placement in Powys - with Ross, his parents, his brother and sister. . . and a rather soft dog

Sylvia Thompson

The article gives an insight into the life of a family with a child with severe mental handicap as seen by a pupil nurse involved with the family on a 12-week placement. It stresses the need for parents and professionals to reach a mutual understanding, and highlights the most important skills required of a community nurse.

Introduction From January to March 1987 I undertook a 12-week

placement as a pupil nurse in the home of Ross, a three-year- old boy with severe mental handicap, and his family. Ross’s behaviour is hyperactive and he also has epilepsy. My work mates were Ross’s parents, Mr. and Mrs. Jones*, and his teenage brother and sister. As I didn’t know any other pupil nurse who had been in this kind of situation I was apprehensive about what part I would play; but after meeting Mrs. Jones and having a long chat with her about how she felt about this “new idea” I very soon found myself happily involved. It was a whole new learning experience for me; there I was, working with the experts. I always had the full support of my Tutor, which I found invaluable. We had frequent discussions during the placement.

My Tutor had outlined the aims and objectives of my new placement and I kept a detailed diary of how each day went, realising, as I wrote it, just how much I was learning. Ir was also a new experience for the family; so we helped,each other and deliberated on what we were doing as we went alo’Ilg.

I soon realised that reading about parents whose child has a mental handicap is one thing, but actually being there and seeing the reality of it all is a whole new ball-game. I began to see how they coped with the stresses, strains, and joys; and also how much they were involved with their friends, relatives, and the professionals with whom they were connected. Mrs. Jones made this involvement clear to me when she said, “This is where it all happens”. I was in the midst of it.

*Fictitious name for reasons of confidentiality

How they coped The family home, both inside and out, was well-geared to

meet Ross’s physical needs. It had a very loving, happy atmosphere. Despite my initial anxiety about being an Outsider playing an unusual role in their lives I found all members of the family to be kind, caring, and, above all, sharing.

From being with the family day-by-day I began to understand how they approached and dealt with the strains and pleasures of having a child with a mental handicap living at home. When, later on, a confident and trusting relationship had developed between us both parents felt able to share with me their deeper feelings about their “special” son. They had many experiences of people trying to “help” them; some had been beneficial, others not so favourable.

As Berry (1987) affirmed: “. . . what happens when we come face to face with a person with a mental handicap . . . is very much the sharp end of the business. It is their real experience of service delivery and if we do not get that right then efforts in other directions may have been in vain”. I soon realised that what other people felt the family “should” do was not always what they actually felt they needed to do; and this conflict sometimes led to a feeling of being let-down by those who were there to help. I began to appreciate the need for good communication techniques and the ability to sit and listen.

This family’s attitude was not unusual. Ann Worthington (1982), another parent, maintained that: “Accepting the child is acknowledging his place in the family, being able to find pleasure in the characteristics he possesses and the things he can do, rather than concentrating on what he lacks”. Taking one day at a time was the approach which the whole family took. Everyone pulled together to include their very “individual’’ member of the family. Mr. Jones had a philosophical way of approaching his son. “He doesn’t owe me anything”, he said; and was overjoyed when Ross achieved something, however small. The older brother and. sister helped out in their own way by playing with or minding their little brother; sometimes just to enable their mother to catch up on much needed sleep.

SYLVIA THOMPSON is a Pupil Nurse, Powys Schooi of Nursing, LIys Maldwyn Hospital, Caersws, Powys, SY 17 5HA.

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Some of the problems Everyone accepted that it was not possible to plan ahead.

Clearly, even the best made plans could suddenly go awry. A long-awaited weekend of respite care for Ross, for example, had to be cancelled when he became ill; meaning that a much-needed break for his mother was also called off.

Ross needs much attention during his time at home, so Mrs. Jones uses the hours he spends in the special school, which he attends daily, doing all the household chores; this being the only opportunity available to her. These hours are the only time that she is free from his demands and the play activities he enjoys. She found it helpful for me to be able to look after Ross during my placement and appreciated the opportunity to have some freedom. My being “on the spot” enabled Mr. and Mrs. Jones to have a break. They are not usually able to rely on many people to baby-sit because of the problems Ross presents. Mrs. Jones said, “This is the kind of help we need”; but I was never made to feel used, only appreciated. I think that having a grown-up family of my own helped in building up this trusting relationship, even doing shifts as the family “nurse” when they went down with ’flu. Whilst hopefully becoming a useful member of the team I was able to glean experience from the various situations in which I found myself.

Each situation presented its own difficulties. Even a visit to the local clinic could not be undertaken without some trepidation, as I found when Mrs. Jones and I took Ross to keep an appointment. The more understanding receptionist, who usually gave Ross priority, was not on duty. Mrs. Jones had to cope with him exploring and experimenting with each obstacle, be it human or otherwise; while we listened to the sort of less helpful, sometimes hurtful, comments which unsympathetic members of our society sometimes make when they encounter a child who has a behaviour problem. Visits to the dent is t , assessment centre , hospital appointments, even going shopping cannot be anticipated with pleasure; each is considered an obstacle and is overcome accordingly. It is difficult for anyone to appreciate how this family, and others in a similar position, may feel about their involvement with other people, and the treatment they receive from them, without first-hand experience.

Involvement with others I wanted to understand how the family reacted to having a

child with a mental handicap. I wondered whether their early negative responses towards others would change (to positive) as they came to grips with the people with whom they would have to be involved?

Everyone I met during the placement had a part to play in the family’s life. Most people were helpful to me as a learner nurse. They demonstrated that there is no need to be isolated through having a family member who is mentally handicapped. Mrs. Jones was an active member of the local Opportunity Play Group. This included children with handicaps and without, so it was very interesting to visit and play with them, and meet the many professionals and parents who were there from all walks of life. These included an educational psychologist, physiotherapist, home aides, helping hands, a representative from Play Matters, and several teachers. Unfortunately, the gratuitous advice proffered by so many people with differing areas of experience sometimes aggravated Mrs. Jones.

Thankfully, since the Education Act (Children with

Special Educational Needs), 1981, children like Ross have a place in the school system, organised to meet his needs and treat him as a special person. The communication between school and home is important. With ROSS, a simple daily note about his day’s activities and daily “nap” proved invaluable. Knowing what his pattern had been in school each day meant that Mrs. Jones could arrange his evening accordingly. This kind of mutual approach is very important; both school and family benefiting from shared information. The occasional breakdown in this daily contact resulted in vexation for both parties.

Role of parents From the time I spent with Ross and his family I realised

that the home is the major learning environment. Most of Ross’s therapy was done on his mother’s knee! The parents are the “experts” when it comes to teaching a child who is handicapped. They know their child best.

Mrs. Jones is ‘<on the spot”. She knows what her son is capable of learning next, so liaising with the community nurse on skills teaching using the Portage Home Teaching system (CESA, 1969) seems to be a relevant course to follow. Although Ross has learning difficulties Mrs. Jones says, “He can do it”. Her optimism has taught me a lot. She does not become anxious if he does not achieve; neither does she become obsessed by the task in hand. She meets each day as it comes, deals with i t , and then approaches tomorrow similarly; putting each day away into its place.

Talking to Mrs. Jones allowed me to see, from her point of view, what the parents considered the “real” needs of their son to be. It seemed that they felt that their needs were not always properly recognised by others, and that they were not identified in an order of priority with which they agreed. They were left feeling dissatisfied with the service they were receiving. As a result, professional helpers felt that they were not achieving enough. I was left as the “pig in the middle”; being able to see the situation from both sides. As Mittler (1979) stressed: “The foundations for partnership surely lie in the exploration of the unique needs of each family . . . Collaboration with parents must in future be seen as one of the hallmarks of a well-trained professional”.

Role of community nurses The policies of the All Wales Strategy(We1sh Office, 1983)

form an important part of my training. The Strategy document is the backcloth: “A policy initiative backed up by considerable financial resources which needs to provide bet ter services for mentally handicapped people. Community Mental Handicap Teams are seen as a valuable model for coordinating service delivery and enabling services to be tailored to meet the needs of individuals . . . They are there to meet the needs of people with mental handicap and their families”.

The Joneses were very aware of the part their community nurse plays in their life. His skills, specialised knowledge, help, and advice are of paramount importance. It was helpful to me to share the family’s concern over problems that cropped up during my placement and to see how their community nurse dealt with each of them. He fulfilled many different roles. The practical help he gave included arranging a home aide, respite care, advice on the medication used to control ROSS’S epilepsy, and how to cope with his behaviour problems and feeding difficulties. Generally his “being

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MENTAL HANDICAP VOL. 16 MARCH 1988

there” as a friend in the partnership was a role which the family greatly appreciated.

I realise that time I spend in other placements, like special schools, adult training centres, and a hospital, amongst others, will all be very valuable during my training; but different skills areneeded to be an effective member of a community team helping people with mental handicaps living at home with their families. As I continue my training and spend some time with a community team the role of the community nurse will finally slot into place. Already I have learned that a good community nurse must be able to listen and communicate effectively, not only with the person who is handicapped but with the whole family. Vitally important is the nurse’s experience of, and ability to teach and help the family deal with, behaviour problems. The home is the “heart” of the matter; by acknowledging and understanding just how families with a child who is mentally handicapped cope from day to day, and appreciating the whole area of family life, the community nurse can jointly agree with the family what they really need in the way of support. It is, of course, only possible to guide and help if a good relationship is built up with the family. Without their cooperation any programme is doomed to failure. Mutual understanding is paramount.

In conclusion In retrospect, from this placement I have perceived that

families with a member who is mentally handicapped can be under seige by helpful experts, without any real help being given. They can feel isolated, even though they are visited periodically and given advice. There is a danger that they will eventually pull up their drawbridge and pay lipservice to the professionals unless they are made to feel important and time is spent getting to know them and their particular problems. Families must be listened to, and consulted, so that mutual agreement can be reached on tackling the individual needs of each child in order to improve the quality of life of every family member. The Jones family was a mixture of all this;

being able to dissect the unwarranted advice from some whilst working with others to reach the targets best suited to their own child.

Finally, may I say that I will not try to relate, second-hand, the heartbreak, disbelief, learning to live with the situation, and trying to cope that the family shared with me. Suffice it to say that it is difficult to translate my experiences and feelings into words. I found that, above all, I needed to be diplomatic and honest enough to say, sometimes, “I don’t know” when asked to comment on something too large for me to handle. I know that it has been a very worthwhile experience for me, sharing family life with Ross.

Acknowledgements I would like to acknowledge the help given to me during the

placement by the Powys School of Nursing and, particularly, my tutor Mr. David Wroe. Also thanks to Ross and his family for all the time shared with them.

REFERENCES Berry, I . Individual programme planning and the All Wales

Strategy: some content and process issues. In Grant, G., Humphreys, S., McGrath, M. (Eds.). Community Menral Handicap Teams: Theory and Practice. Kidderminster: British Institute of Mental Handicap Conference Section, 1986.

Cooperative Educational Service Agency (CESA). Porrage Guide to Home Teaching. Portage, Wisconsin: CESA, 1969. Avail. from: Windsor: Nl%R/Nelson.

Education Act (Children with Special Educaiional Needs) 1981. London:‘HMSO, 198 1 .

Mittler, P. Patterns of partnership between parents and professionals. Parents’ Voice, : 1979; 29, 10.

Welsh Office. A11 Wales Strilregy For the Development of Services for Mentally Himdicapped People. Cardiff Welsh Office, 1983.

Worthington, A. Coming to 7enns with Mental Handicap. Whitby: Helena Press, 1982.

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