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CHILDREN & SOCIETY (1991) 5:3, 241-25? A bereavement model for working with fanzilies of handicapped - children JUNE STEWART AND GLORIA POLLACK SUMMARY. This paper presents a model for counselling families of young handicapped children. It is argued that the process that parents go through following the birth of a handicapped child is akin to bereavement following loss. Therefore, professionals on a wide range of disciplines should be sensitive to the grief that parents are experiencing. The authors have used L.e Poiahin's theory of adjustment to loss to structure their own theories and to devise a checklist to aid other professionals. Their experience indicates that the birth of the handicapped child may act as a catalyst for psychological growth in parent-st particularly mothers. Introduction It is now becoming more standardpractice in the United Kingdom for professionalsto become involved with families as early as possible after the birth or diagnosis of a handicappedchild. However, westillmdinthepress,orcomeacrosspamtswhohavefelt very isolated and unsupported at this time of crisis, so probably there are still gaps in the dces offered in different areas of the country. As pointed out in other papers (Sloper et al., 1983;Davis, 1985),the methods of interventionthat are offered tend to be mainly child centred, focusing on the health, behaviour and intellectual developmentof the child rather than on the psychological needs of the family. It is only recently that this kind of therapeutic family-centredapproach has started to be implemented on a small scale (see Buchan et al., 1988; Silverman and Stacey, 1989)even though it has been recognised for some time that a severelyhandicapped child places great stresses on the family unit (Seligman, 1979; Burden, 1980;Friedrich and Friedrich, 1981). The dichotomy between the child-centred and the family-centred approach is commented upon by Heather Hewitt (1977, p.12): ... emphasis is concentrated upon the handicapped child, rather than on the handicapped child as onemember of a family unit, all members of which have equal rights amid a diversity of need. Professionals working in this field, using a family-centred approach, may find it beneficial to use a theoretical model to facilitate their work. One such model has been 741

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Page 1: A bereavement model for working with families of handicapped children

CHILDREN & SOCIETY (1991) 5:3, 241-25?

A bereavement model for working with fanzilies of handicapped

-

children JUNE STEWART AND GLORIA POLLACK

SUMMARY. This paper presents a model for counselling families of young handicapped children. It is argued that the process that parents go through following the birth of a handicapped child is akin to bereavement following

loss. Therefore, professionals on a wide range of disciplines should be sensitive to the grief that parents are experiencing. The authors have used L.e Poiahin's

theory of adjustment to loss to structure their own theories and to devise a checklist to aid other professionals. Their experience indicates that the birth of

the handicapped child may act as a catalyst for psychological growth in parent-st particularly mothers.

Introduction It is now becoming more standard practice in the United Kingdom for professionals to become involved with families as early as possible after the birth or diagnosis of a handicappedchild. However, westillmdinthepress,orcomeacrosspamtswhohavefelt very isolated and unsupported at this time of crisis, so probably there are still gaps in the d c e s offered in different areas of the country. As pointed out in other papers (Sloper et al., 1983; Davis, 1985), the methods of intervention that are offered tend to be mainly child centred, focusing on the health, behaviour and intellectual development of the child rather than on the psychological needs of the family. It is only recently that this kind of therapeutic family-centred approach has started to be implemented on a small scale (see Buchan et al., 1988; Silverman and Stacey, 1989) even though it has been recognised for some time that a severely handicapped child places great stresses on the family unit (Seligman, 1979; Burden, 1980; Friedrich and Friedrich, 1981).

The dichotomy between the child-centred and the family-centred approach is commented upon by Heather Hewitt (1977, p.12):

... emphasis is concentrated upon the handicapped child, rather than on the handicapped child as onemember of a family unit, all members of which have equal rights amid a diversity of need.

Professionals working in this field, using a family-centred approach, may find it beneficial to use a theoretical model to facilitate their work. One such model has been

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developed from the notion suggested by authors such as Labon (1974) and Seligman (1979) that having a handicap@ child provokes a bereavement reaction in the family. In this model, following the birth of the handicapped child, the family undergoes the stages described in the traditional theories of bereavement and loss as developed by writers such as Bowlby (1980), Murray-Parkes (1975) and Warden (1983).

Traditional bereavement theory centres on psychological and emotional adjustment to loss. Susan Le Poidevin in her model of adjustment to disability (Le Poidevin and Cameron, 1985) broadens this approach and maintains that, following loss, a whole process of practical, psychological, and spiritual adjustments need to be made in order to cope with the trauma.

In this paper we shall be describing how, in the course of our long term involvement with families of handicapped children, we have come to integrate these two complimentary approaches. We will discuss how we work with these families and will relate with examples how their experience is congruent with the two models mentioned above. We describe a way of working with children which establishes, as a main priority, the parents’ experience of the crisis, whilst also taking into account the child’s needs and the practical issues. However, to focus on the parents’ grief and crisis is seen to be of paramount importance, - the resolution of that crisis is considered to be a pre- requisite for a healthy development of the child, the parent and the family unit.

Description of intervention Our model has evolved from our experience in this field in the last 12 years, during which time we have worked intensively with 83 families with handicapped children. Most of these children had learning disabilities, some were multiply handicapped or had sensory or physical disabilities. Our work has been carried out in the outskirts of Liverpool in a predominantly working class area and our initial methods of intervention, such as monthly home visiting, the establishment of a parents’ group and the forming of links with a wider community, have been described in previous publications (Pollack and Stewart, 1979; Pollack and Stewart, 1982; Fajnsztejn-Pollack, 1984).

Briefly, what we have done during these 12 years is to visit families with very young handicapped children on a monthly basis for a period of one to three years. The sessions lasted for between one and one and a half hours and have been complemented by linking the parents with resources in the community. We also developed resources such as a parents’ group and toy library. Initially our approach was very child-centred in that we used developmental charts, stimulation programmes and behavioural interventions. The sessions tended to be of a prescriptive nature even though, from the beginning, we took the notion of ‘parents as partners’. Because we were truly concerned about empowering parents we listened attentively to their expressed feelings and gradually became aware that there was a deeper issue that needed to be addressed, that of parental grief. In becoming aware of this we slowly changed our approach and we started to allow more time in the sessions for the expression of

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feelings, and facilitated this exploration of feelings by the posing of appropriate questions or statements. It became clcar to us that the psychotherapeutic techniques derived from our child guidance background, were equally pertinent to our work with the handicapped children and their families.

Inherent in these techniques are the following preconditions:

1. The unconditional acceptance of the client family. 2. Reliability - try never to fail the client in so far as it is possible. 3. A consistency of approach, so that the client knows where she or he stands. 4. The allowance of individual differences is essential, being mindful of the

5. The pitching of the approach at the client’s level of development in respect

6 . The acceptance of a long term commitment to the family. 7. Let the client dictate the pace of the process, patience is essential.

Theserequirements whichmay seem,at firstglance,verybasic,arenotnecessarilycalled upon in a more directive, prescriptive approach, particularly numbers (4), (5) and (7).

As the focus of our involvement changed, we found that the ideas expresscd by the bereavement theories were fundamental in understanding the process that the families weregoing through. We then started applying this model to aid our perception of what was happening to these families. This model alone was not sufficient to encompass all the facets of our intervention; we found its complement in the work of Susan Le Poidevin.

The application of the bereavement model It is well documented that the process of bereavement following loss includes the feelings of numbness, yearning, anger, denial, protest, guilt and despair. These are all feelings that parents have described to us in relation to their own reactions to the diagnosis of the handicapped child. The following is an outline of how these feelings have been expressed to us by pcople who have experienced such grief following the birth of a handicapped child.

Numbness This is the first stage of bereavement and, by the time of our first visit, this stage has passed. However, we normally ask parents to tell of their feelings when they fist suspected or were informed of the handicap. The reliving of the experience is often done at great length and paves the way for the expression of feelings of pain, anger, disappointment.

client’s uniqueness.

to the bereavement process.

Denial This is a very common feature in the bereavement process and is expressed in many different ways. Frequently, the mother of a Down’s Syndrome child will say how

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‘normal’ she or he looks and may even query if there may have been a mistake. In the case of children with no genetic of physical damage, the process of denial is even more pronounced Very often parents will s m s that ‘there is nothing wrong with the child except for a speech problem’ and that she or he will ‘recover’ when speech is developed.

Some parents accept the here and now of the handicap but cling for a long time to the idea of a ‘normal’ future, or even a magical cure. We think that this is equivalent to the searching behaviour seen in people who are mourning a loss. In one particular case, for two years the parents avoided contact with all professionals who might confirm that their child was going to be retarded. In this instance, the numbness and shock occurred when the diagnosis was made explicit.

Anger Anger is a very strong and prevalent feeling among parents that we visit, mainly directed towards the hospital where the child was born, the professional who made the initial diagnosis and, on rare occasions, towards the spouse or his or her family of origin. We often find that only in later stages are the parents able to acknowledge their mixture of anger and love towards the handicapped child and we consider, along psychotherapeutic lines, that this is a very healthy stage.

Guilt Sometimes, guilt takes the form of an irrational feeling of being punished for something they have done; not necessarily connected with the pregnancy or birth, as in the caseof the mother of a Down’s Syndrome baby who felt the child was apunishment for not being married to the child’s father. More common are the mothers who blame themselves for self-neglect, such as smoking, during pregnancy or neglecting an illness in their child that later leads to the handicap.

Sadness and despair We are told that, at the time of the blrth or diagnosis, the parents expressed sadness and cried, however, often we find that they have been encouraged by society to be ‘brave’ and to cease the open expression of grief. Normally the parent is very composed at OUI first few meetings, but as they learn to trust the relationship, they are able to speak about their pain. One mother was ashamed of crying in the session because she believe that all the other parents of handicapped children ‘coped so well’, implying therefore that crying was a weakness. In the session we were able to give her ‘permission’ to show her sadness and offer reassurance that crying is a normal and health emotion. Alongside the sadness there is feeling of despair and hopelessness, the pain will not go, life will always be unbearable, normality will never be restored. When this happens, it is not helpful to offer rational arguments to counteract the parents’ pain. It is better just to say that the pain is bealthy and normal, but that with the passage of time the pain will become less intense and less frequent.

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Identification phenomena and feelings of loss and self Murray-Parkes (1975) identifies these features as commonly seen in those who have suffered loss. In the case of the parents of a handicapped child, this may take the form ofassuming a handicapped identity; parents are reluctant to mix with parents of normal children, they feel less than perfect and so believe that they are bound to be rejected. We know of a father who will not acknowledge that he has a handicapped child to anyone outside his immediate family. It must be noted that the whole issue of the need to procreate, and the connection of parental self-image to the production of children is so complex and far-reaching that it merits study in its own right. This particular issue has serious implications for siblings who often bear the brunt of stigma in the community. We have many examples of children who suffer teasing and even bullying because of the handicapped brother or sister.

Healing For most of the mothers that we visit, the healing process can be clearly observed. Having worked through the denial and the pain, which can take up to three years or even longer, the mothers regain, or even gain for the f i t time, a sense of well-being. As will be seen in the next section, an adjustment process occurs, and sometimes even personal growth can follow. It must be said that we do not know if this phenomenon applies in the case of fathers as up to half of the fathers do not attend the sessions even in an area of high unemployment such as ours. We can only assess their grief through their wives’ accounts. We have a number of fathers who attend the sessions occasionally or regularly. Some of these are extremely supportive to their wives, but we still find it difficult to engage them in discussion of feelings. What is clear to us is that usually the denial process is more intractable in fathers. We can only hypothesise that in many cases, if not most, fathers experience the bereavement vicariously through their wives, and therefore lag behind in the adjustment process. We do not know how, or if, healing eventually occurs. It must be said that the lack of participation of fathers in projects involving child rearing practices and related issues is a worldwide phenomenon. Therefore it is important to make it clear that, in the case of our project, the father’s restricted involvement is likely to be due to cultural factors concerning parenthood rather than to the special case of having produced a handicapped child.

Arypical grief As in all cases of bereavement, there are sometimes instances of atypical grief, expressed through prolonged denial or displacement of feelings. In our experience and in common with other writers who deal with the subject of loss, this reaction to grief can be linked to life experiences pre-dating the birth of the handicapped child.

A few parents tell us that afteran initial show of sadness, when the diagnosis is made, they cany on as normal and do not experience any more grief. Following the theory of bereavement we interpret this as a denial of feelings and an interruption of the nonnal

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process. We become concerned when parents maintain an exterior of over-competence or become over-involved with the child or the whole area of handicap. Some time ago, this concern was reinforced by an experience with as ostensibly coping mother wh later became severely depressed when her child was about five years of age. We a very aware, however, that it is crucial never to force bereavement issues upon parents but to let them go at their own pace. In these cases we believe it is important to stay involved with the parents and work at a level that they will accept which may mean only dealing with practical issues and not with feelings.

The development and application of Le Poidevin’s model of adjustment to loss Susan Le Poidevin (Le Poidevin and Cameron, 1985), as a result of her work with handicapped people, especially blind people, developed a model of adjustment to lm which echoed our own experiences and provided us with a very useful framework to guide our work. She defines eight basic tasks that the person facing the handicap has to accomplish. We have added one more task, that of healing the grief. We have adapted her model and made it applicable to the situation of the parents of handicapped children. Although Le Poidevin’s focus was the individual disabled person, she also recognised the need for the family to adjust to the disability. To aid us in our work we have devised a chart (see Appendix) which provides a clear description of the adjustment tasks to be achieved, and gives guides to the professional as to the progress being made by the family. The following is a description of the tasks to be encountered in the process of adjustment. We will clarify some of the concepts, by using examples from the families with whom we work, in addition to ‘grief adjustment’ which was discussed in the previous section and is an essential pre-requisite for the other tasks.

Intellectual adjustment This relates to the parents’ ability to accept the handicap and the implications for the present and the future, and the uncertainties inherent in that. This part of the adjustmenl means that the parent will already be working satisfactorily through the process of denial, which was described in more detail earlier in the paper. It takes time for the parents to realise the full implications of the handicap; reading books on the subjectcan be painful, as can talking about the future. Gradually, though, there comes a point when most parents know as much or more than the professionals about the particula handicap of their child. Sometimes parents go through a period of intense reading and searching which tails off after a while.

Psychological adjustment In LePoidevin’s model, psychological adjustment means not feeling inferior, ashamed or helpless about having a handicapped child. With the families with whom we have worked, we have oply observed glimpses of this process, for example, mothers whc feel estranged in the company of others who do not have a handicapped child, alsc

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fathers who do not talk in work about thcir handicapped child. We vividly recall the extreme case of parents who never left the house with their three year old multi- handicapped child, except for visits to the hospital. Siblings may also suffer feelings of inferiority, sometimes increased or even provoked by taunting remarks made by their peers with respect to their handicapped brother or sister.

Spiritual adjustment This refers mainly to the questions ‘why me?’ and all the issues that this entails: the person’s belief system, fate, faith, hisher view of life, bearing in mind the idea commonly held of misfortune as a punishment. Parents work through this issue in many different ways, some not considering it at all as far as we know. We can offer two contrasting examples of this. Both families were practising Catholics, but while one mother’s belief helped her make sense of the handicap, another saw God as punishing her undeservedly and was feeling rejected by him. She also rejcctcd him in turn.

Physical adjustment Has the family adapted to meet the practical demands of a handicapped child such as providing stimulation at the appropriate level of development, and managing behaviours appropriately? This latter can be particularly difficult in the case of handicapped children. To do this successfully, parenls will need to develop good relationships with professionals who can give access to books, equipment, stimulation programmes, and indeed put parents in touch with their own skills and ability to cope.

Emotional adjustment The focus of this process is the establishment of a healthy relationship between the parents, the siblings, and the child, which is sometimes very difficult to achieve, given the situation. This means achieving goals such as the expression of warmth and anger, and having the right balance of expectations of the child which will resolve issues such as over-protection or excessive demands on the child. In the case of siblings it requires permission to feel and express normal sibling rivalry and to come to terms with the special demands, ‘privileges’ and shortcomings of their handicapped brothcr or sister. All these positive adjustments should ensure that the handicapped child has a good self-image as projected by the other members of the family.

Behavioural adjustment This is an essential process if some sort of equilibrium is to be restored. The parents must adapt to changes imposed by the handicapped child on the normal family routine. It will involve, for example, making a realistic time allocation for the child according to his or herneeds, but simultaneously allowing time for the different family members, especially other children, the marital couple and the parents as individuals. This may be one of the most difficult tasks to achieve because it means that, contrary to normal

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social expectations, the mother, in order to survive, cannot be the only care-giver. In the most successful cases, the father is incorporated into the ‘team’ sharing responsiblities, and the parents even entrust their child to someone outside of the family unit through respite schemes etc. A sUilung example if this is the case where the mother, after an initial period when she needed to be with her very sick and handicapped child 24 hours a day, saw the necessity of sharing the child with firstly her husband then with other people.

Practical adjustment If the parents have developed an acceptance of the situation, they should also, with guidance, have acquired a grasp of the resources available - school, respite, allowances, where to go for help. Furthermore, to achieveoptimum quality of life they need to learn how the different agencies operate as a system. For instance, we have worked with a family which was at risk of collapsing as a viable family unit but which, by contacting thc right people, could successfully participate in a shared-care facility for their older severely handicapped boy, and thus ensure the whole family’s survival. It might be worth stating at this juncture that the ‘system’ is notoriously difficult to negotiate and that the professional has a role in facilitating this point of growth.

Social-culrural adjustment Parents who have worked through these various adjustments may reach a stage where they can look at wider issues relating to handicap. They will have become more assertive for their own and their children’s rights and, if so inclined, will be able ta participate in parents’ groups. In some cases, parents will have moved from despair ta self-confidence. Indeed, successfully resolving the crisis gives them more insight into their own lives. We have many examples of this, women who have pursued carers, couples who have re-evaluatcd their marital situation or, in their own inner lives, have reached an awareness of themselves and the world. Very often at the end of our period of involvement, the focus is f m l y on the future of the couple or the individual, rathe1 than solely on the handicapped child.

Conclusions Adjustment to having a handicapped child is very complex and requires a family integrated approach rather than one that is strictly child-centred. Having a handicapped child is a major crisis which creates conflict in its own right, and reactivam previous unresolved issues. It can be Seen that there are similarities with bereavement through loss. Consequently, the approaches used in bereavement counselling are very relevani in helping parents to work through the pain of their ‘loss’ and to adjust gradually.

It could be argued that, as with normal bereavement, most parents should have the inner resources to go through the process and adjust successfully. However, as having a handicapped child is a very rare occurrence, society is not equipped at an emotiona

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M a practical level to help the ‘bereaved’ parents with their grief and adjustment task. In the light of this, we have formed the opinion that it is extremely beneficial, and probably essential, for families with a handicapped child to receive the type of specialised help that takes into account the parents’ grief as well as the practical needs of the family and the child. Moreover, as the handicapped child will inevitably require professional input at various stages in its life, it is vital that those professionals such as teachers, health visitors, paediatricians, psychologists, social workers, speech therapists etc. are very aware of the complexities of the situation.

As stated earlier, this model has been developed over a period of 12 years, and as it has been evolving we have checked with parents if their experiences match our interpretations. Almost invariably, we have had confirmation of ourpremises; however, we are very aware of the bias inherent in the situation. With this is mind, we have devised an evaluation package based on in-depth interviews with the intention of checking out our hypotheses. Work carried out in our Borough by Thomas (1990), usingLePoidevin’s model toevaluate theadjustment ofparents tohavinga handicapped child, tends to lend support to the validity and usefulness of those hypotheses.

Regardless of this inability, as yet, to evaluate our project more objectively, what we have observed in the parents with whom we have worked, in terms of their growth and adjustment, gives us confidence in the appropriateness of our approach. Indeed, we are inclined to believe that the risks of actual and latent rejection, over-involvement, or family disfunction as described in the literature are greatly increased if the overall needs of the family in crisis are not met.

References Bowlby, J. (1980) Loss, Sadness and Depression. The Hogarth Press. Buchan, L., Clemerson, J. and Davis, H. (1988) ‘Working with families of children with

special needs: the parent adviser scheme’, Child: Care, Health and Development, 14,

Burden, R.L. (1980) ‘Measuring the stress on mothers of handicapped infants: must depression always follow?’, Child: Care, Health and Development, 6 . pp.111-125.

Davis, H. (1985) ‘Counselling parents of children who have intellectual disabilities’, Early Child Development and Care, 22, pp.19-35.

Fajnsztejn-Pollack, G. (1984) ‘Apoyopara familias con unnino deficientemental. Descripcion de un project0 comunitario in Inglaterra’, Revista Chilena de Psicologia, 7(4), pp.73- 17.

Friedrich, W.N. andFriedrich, W.L. (1981) ‘Psychosocial aspectsof parents withhandicapped children and non-handicapped children’, American Journal of Mental Deficiency, 85,

Hewitt, H.A. (1977) ‘Early intervention; a guidance programme for parents of handicapped

Labon, D. (1974) ‘Handicapped children, their parents and their teachers’, Forward Trends,

Le Poidevin, S. and Cameron, J. (1 985) ‘Is there more to Portage than education’ in Paly, B.,

pp.81-91.

pp.551-553.

children’, The Exceptional Child, 24, pp.12-17.

pp.97-103.

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Addington, G., Kerfoot, S., and Sigston, A. (eds.) Portage the Importance of Parents, NFER Publishing Co.

Murray-Parkes, C. (1975) Bereavement: studies of grief in adult life. Pelican. Pollack, G . and Stewart, J. (1979) ‘Development of provisions for handicapped pre-school

children with special needs within the framework of a Schools Psychological Service’ Association of Educational Psychologists Journal, 5(1), pp.56-60.

Pollack, G. and Stewart, J. (1982) ‘Group work projects with parents of handicapped children’, Association of Educational Psychologists Journal, 5( lo), pp.40-42.

Seligman, M. (1979) Strategies for Helping Parents of Exceptional Children. New York: Free Press, Chapter 3.

Silverman, D. and Stacey, M. (1989) ‘Listen to the parents’, Special Children, 27, pp.18-19. Sloper, P., Cunningham, C. and Amljotsdottir, M. (1983) ‘Parents reactions to early

intervention with their Down’s Syndrome Infants’, Child: Care, Health and Development, 9, pp.337-376.

Thomas, P. (1990) The Process of Adjustment: The Problems and Needs of Parents of Mentally Handicapped Children. Unpublished masters dissertation. Liverpool University.

Warden, J.W. (1 982) Grief Coumelling, Grief Therapy. London: Tavistock Publications.

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APPENDIX

Professional assessment of family adjustment to handicap

Name of child:

Name of parenuguardian:

1) Grief adjustment a) Has the parent cried? YES NO

YES NO Has helshe expressed sorrow in other ways? e.g. talked about it, been ill.

b) Has helshe been angry? (with whom?) Has helshe overcome the anger?

c) Has he/she felt guilt? Has helshe overcome the guilt?

YES NO YES NO YES NO YES NO

d) Can hdshe expose self to books or films about handicap? YES NO YES NO

e) Can he/she use the word handicapped without too much hesitation? YES NO YES NO

Can hdshe visit handicapped institutions? eg. school, respite provision.

Do you the worker feel that the parent is comfortable with that word? (are you comfortable with it in their presence?)

Observations

2) Intellectual adjustment a) Is there a clear diagnosis of the child? YES NO

If ‘yes’ does the parent understand the implications? YES NO If ‘no’ does he/she live with the uncertainty? (without shopping around!) YES NO

b) If there is a clear prognosis is the parent aware of it? Has helshe accepted it? Is helshe denying it? Is helshe looking for a miracle cure?

Observations

3) Psychological adjustment Does the parent feel that helshe is less worthwhile as a person since the diagnosis of the child (e.g. hopeless feelings about coping with the child, feelings of rejection from other people? If ‘yes’, has helshe been able to overcome that? Does he/she feel shame?

YES NO YES NO YES NO YES NO

YES NO YES NO YES NO

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Does helshe feel envy? YES NO Has the image of the family suffered? (e.g. more dependent, object of pity). YES NO Can the parent see where the family and the child fit in, in a normal world? (e.g. see the child as a child, rather than just a handicapped child, trying to attain a normal life). YES NO

Observations

4) Spiritual adjustment Has the parent asked the question ‘Why me?’ Did the arrival of the child cause a crisis in the perception of religious faith, or view of the world? If ‘yes’, has the parent resolved this? Does the parent think that the arrival of a handicapped child was just due to a random process? (as opposed to punishment).

Observations

YES NO

YES NO YES NO

YES NO

5 ) Physical adjustment a) Can the parent provide the stimulation needed for the child,

appropriate to the level of development? YES NO b) Has the parent developed a good working relationship

(equal if possible) with other professionals? YES NO c ) Is the parent coping satisfactorily with any behaviour problems that exist? YES NO Observations

6) Emotional adjustment a) Does the parent relate to the child with ‘normal’ parental feelings? YES NO

Can express warmth to the child YES NO Can allow some independence (doesn’t overprotect) YES NO Is alert to the child’s special needs and makes time available accordingly. YES NO

b) Is the parent able to separate from the child? YES NO (e.g. have some social life away from the child; let him go to school).

c) Does the parent have an image of the child that allows for the child’s growth, good self-image and independence? YES NO

Observations

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7) Behavioural adjustment a) Has the parent been able to reach an equilibrium in terms of

giving enough time and commitment to: i) Hisher own needs as individuals ii) Hisher needs as part of a couple iii) The needs of the handicapped child iv) The needs of other children in the family

b) Do the husband and wife work as a team?

Observations

8) Practical adjustment Is the parent (a) fully aware of resources available? (b) able to seek out and approach, independently. other agencies for information or help?

Observations

YES NO YES NO YES NO YES NO YES NO

YES NO

YES NO

9) Social-cultural adjustment a) Is the parent able to be assertive where the child’s rights are concerned? b) Can the parent look at wider issues relating to the handicapped,

and contribute to the situation of the handicapped in society?

c) Has the crisis experience facilitated positive changes in the parent hmselffierself, e.g. more assertive for themselves, more insightful, establishing more demanding life goals for themselves? YES NO

YES NO

YES NO

Observations

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