3
	Fostering Parental Involvement

	Pramila Balasundaram

This chapter is based on informal and leisurely conversations with families whose children have a mental handicap.  Most of the parents who participated in these conversations have their children attending the Day Care Centre run by SAMADHAN and located in a low income area of Delhi.  Although our observations are based on over ten years of service delivery in poor urban areas and with children who have a particular disability, the same issues are likely to arise in any situation where parental involvement is sought in service delivery.
	SAMADHAN is a non-governmental organisation (NGO) started by the author in 1981 specifically for children with mental handicap and their families living in areas of poverty and low income in Delhi.  The realisation that services were available only for children aged five years and over, and that they were all located in the urban parts of Delhi, prompted our dual focus on low income areas and on infant and preschool children with mental handicap.  
	Funding is mostly from donor agencies abroad but also from the Ministry of Welfare and through our own efforts at fund raising.  Today the organisation provides services to around 500 families and has five centres which offer special education, vocational training and early intervention in addition to the parent programmes.
	At first, our services were provided only in the day care centre.  But it is always the parents who have the greatest influence in a child's life and hence we have learnt to make mothers and fathers an integral part of our programmes.  It was also important to see them as valuable sources of support for us, and as partners with us, in working together for the final benefit of the child.

Parent-Professional Partnership
Traditionally disability services have been oriented only to the child's needs.  Usually in such situations, the responsibility of the professionals has been confined to informing parents of the child's progress.  The care, education and training of a person with a disability was thought to be so specialised that "mere parents" were seen as unable to handle their own children.   Today it has been realised that involving parents in the care and teaching of the child with disability is absolutely crucial.  The question is therefore no longer whether parents should be involved but how and when they should be involved.

Saroj's Story
Saroj is the mother of a seven year old, Down Syndrome child.  She recently surprised everyone by speaking out very confidently and with great courage at a National meeting of NGOs.  She lives in Dakshinpuri, which is a low income area in Delhi and she is illiterate.  However, she was not always so articulate or self confident.  
	When we first met her and her son, she seemed to have accepted the disability of her son and showed a remarkable degree of composure.  She answered all the questions necessary in filling out our family information forms.  Since her son was just three, the boy was put on our Home Intervention Programme and one of our workers, also from the same community, was assigned the job of visiting her in her home and beginning the transfer of home management skills to Saroj.  
	But contrary to our expectations we found that no progress was being made.  Saroj would dutifully listen and work as long as the home visitor was present but once she left, no work was done.  It was only gradually that we realised that whenever we met Saroj she would put on a brave show for us but that deep down she had yet to accept the fact of having borne a child with mental handicap.  She was not yet ready to assume the responsibility of meaningful work with the child because she was still going through the process of grieving and making the many adjustments necessary when a child with disability is born in a family.  Her mother-in-law was not supportive and openly scoffed at her attempts to obtain help.  The husband was sympathetic but of no help to Saroj.  He was a daily wage labourer who worked whenever he obtained a job.  He was very conscious of his inability to support Saroj.
	In Saroj's case we also discovered that she had been promised a job as a worker in a local factory with good wages.  This would have enabled the family to achieve a better standard of living.  She had planned to start working after the baby was one year old.  But now it seemed as if she would never be able to realise her ambitions.  When she was asked why she never told us all this when we were doing the family history, she replied very simply, "You never asked me about my future plans or what I will do now.  You were only interested in the baby."

	Insert Photo 3.1 here

Acceptance is a Prerequisite to Involvement
Saroj's story taught us a few lessons.  When representatives of a service delivery programme first contact parents it is of course necessary that the often time-consuming task of filling out family information data be done as a first step.  However, by personally visiting the families at home, first hand observations can provide information which will not come out in a verbal interview carried out at a centre.  
	Talking to other members in a family will provide different perspectives.  Family life styles can give a more realistic picture of whether or not a parent, the mother usually, will have the time to work with the child.  
	Some of our concerns will be whether the demands made by others in the family on the mother's time and indeed her energy, will leave her with enough time for the child with disability.  Is much of her time taken up by routine household chores?  Is there someone who can relieve her of some of these chores so that she can spend quality time with the child?  These are some of the details which will need a family discussion.  
	Telling the mother to go home and talk to her family and organise her day in such a way that she will get the time to work with the child is unrealistic.  It has been our experience that often mothers do succumb to pressures of critical or non-supportive family members.  In such situations, the informal social visit of a community worker or a professional counsellor will provide the mother with the support needed.  If the family sees that the skills of the mother are valued and that the development of the child is dependent on her input, there is always a willingness to try.  This has held true for all parents whatever the economic group to which they belong.
	This is what happened with Saroj.  It was only after many visits to her home and discussions with her husband and her mother-in-law that Saroj  was "allowed" to come to the centre with her son and the home training programme followed.  Today she is an articulate advocate for the benefits of parent involvement.  She is a respected member of her community because having undergone a period of training she now helps us in our work in reaching out to the community by acting as a catalyst.

Nurturing Parental Growth
How do we know when a parent is ready to get involved with service delivery?   Our experiences tell us that unless there is acceptance, involvement does not happen.  
	The bonding or relationship between the mother and the infant begins right from the birth of the child.  The mother of a child with disability will be often unable to do this bonding because the disability of the child will make this extremely difficult and it may even prove impossible if the child is severely disabled.  Mothers of non-disabled will automatically respond to the needs of the child and react positively to the many cues which even a young infant will make.  For instance if the child shows interest in an object the parent will use the situation as an opportunity for teaching skills or for play.
	A mother who is depressed will be unable to respond to the cues of the child.  So the special relationship between mother and child will be extremely slow in developing and sometimes may not develop at all if there is anger or rejection.  So, keeping in mind that the reason for involving parents is to maximise the development of the child, it is necessary to first ensure that the parents, and particularly the mother, has achieved a certain amount of emotional maturity.
	It is easy to come to conclusions about parents who are not participating by labelling them as uncooperative, overprotective, lazy, or uncaring.  Very often the reasons may be that the parents are still grieving, or frustrated at lost ambitions, or resenting the extra work and financial burden.  The many emotions parents go through at the birth of a child with disability are well documented;  the sorrow, the anger, the shame, the despair and the death wish.  Service providers need to be patient, willing to listen at all times and not be critical or judgmental.  If parents have not yet accepted the fact of disability in their family, parent involvement may be counterproductive.
	All parents can be helped to work towards parental growth in several ways.  The first step will be to provide adequate emotional support.  If this can be done as soon as the parents know of the baby's disability the better the chances for an early acceptance of the fact of disability.  In many societies the myths and superstitions which surround the birth of a child with disability still exist.  It is essential to explode such myths, especially when the mother is cited as the cause for the child's disability.

Siba's Story
Siba was a very young mother.  Married when she was sixteen years old she had her first baby when she was seventeen years.  Sadly for her and her husband, the child - a boy - was born with a handicap.  This made it extremely difficult for young Siba to regain any sort of normality in her relationships, either with her own or husband's family as well as with neighbours and society in general.  Accusations that she had brought bad blood into the family, that she must have sinned in her past life and was now reaping the bitter harvest, almost unhinged her sanity as did the taunts and much well meaning advice on what she should now do with the "burden" of a child.  Being very young and vulnerable, she found solace in complete rejection of the child.  Economically well off, it became the responsibility of her own family to baby sit.
	Siba was brought to the centre by her husband and we discovered that in him she had a loyal and faithful supporter.  Counselling sessions were therefore planned to include Siba, her family,  her husband and his family.  Sessions began with showing them how unrealistic it was to blame everything on Siba.  It was hardest to convince mother-in-law who saw her son as perfect.  Introducing Siba to other parents gave her the realisation that she was not alone.  Introducing the husband to other fathers made him see that one could continue a normal family life and that indeed other families had done so.
	Siba's 'in-laws' finally stopped making an issue of the situation and using Siba as the scapegoat for every misfortune that befell the family.  This did take many months but the time and energy invested in the counselling resulted in her beginning to care for the baby herself, instead of leaving him in the care of her own mother.  Bonding took place, slowly at first but the day came when Siba began to take delight in every small thing the baby could do.  She would report on such occasions with enthusiasm;  "he smiled at me today"; "he makes noises when he wants his milk", and so on.
	What was happening was that from rejection, Siba had slowly and painfully reached a stage where she accepted the baby as her own.  His little needs were met and when the baby in turn responded, it motivated her to start taking complete care of the baby.  She still had a long way to go before she could actively start involving herself in the child's development, but the process had begun.  
	With acceptance came the realisation that the baby was her responsibility.  The counselling sessions had been planned to help Siba confront the problem.  The process of confrontation is painful.  Siba had to admit to herself that the birth of a baby with a handicap had indeed introduced a problem in her life.  The question now was to how best to solve the problem.  
	There were really only two options.  Either go through life moping about how unfair it was that she should be the mother of a child with disability or do something about it.  This in turn meant admitting to herself that "yes, there is a problem but the problem is mine and I am the one who has to solve it.  In solving it I help my baby."  It meant being honest with herself and looking at the problem squarely in the face.  
	It has been said that "those things that hurt, instruct".  So it was with Siba.  Her capacity to solve the problem was challenged and through the pain of confronting and resolving the fact of having given birth to a baby with a disability, she grew mentally and emotionally.  She learnt to put the baby's needs before her own.  She took time to observe and think about the baby.  She realised that the time she gave the baby and more important the quality of the time she spent with the baby had to change.  This took great courage and self determination and most of all a self discipline which was to change her life as well as that of her husband and eventually of his family.  This is the best example of parental growth.
	There are no short cuts towards achieving such self discipline.  Discipline has been described as a system of techniques of dealing constructively with the pain of problem solving.  Was Siba able to achieve this transition because she was still young?  We do not know the answer.  But it shows that when the parents learn to accept and love the person with a disability in their family, then the strength and the energy to cope follows.

Focus on Family Counselling
It may not be possible for all parents to confront their problems so successfully.  Some parents may resent the intervention of counsellors or other care givers.  Usually attempts at involving such parents in any meaningful activity will fail.  There are no rules on how to handle such situations.  Each individual parent and family will need an approach best suited to their characteristics as a family and the nature of the problem, and whether or not they have support already available.  But it can be safely said that a majority of parents will respond to warmth and friendliness and a non-judgmental attitude.  What will differ is the time taken by different families to reach a stage when they are ready for involvement in service delivery.  The healing process must be complete before this can happen.
	This is when counselling will prove invaluable.  Through the right kind of counselling, the  attitudes of the parents towards the child can be improved, particularly if there is a very negative person in the family.  A holistic approach to the wider family has proved to be the best strategy rather than focusing on the parents and the child or as happens most often, focusing on the mother only and expecting her to take on complete responsibility.  It is important to recognise that every member of the family will have some kind of skills in coping.  A person with a disability in a family will affect different members of the family in varied  ways.  

Family Strengths
Down through the ages, parents have been caring for their children with a disability in whichever way they thought best and within their capacity to do so.  So obviously parents have some measure of coping skills.  What are these skills and how do parents use them?  Professional workers need to identify and build upon these skills.
	To do this effectively we begin by trying to gather as much information as possible of both the strengths and the weaknesses of parents, both as individuals and as part of a family.  All of us have our strong and weak points, and the term 'weaknesses' is not used in a negative sense but rather to identify the particular supports which individual families require.
	Building on strong points or abilities of parents will obviously obtain better results.  This will also help in identifying specific skills a parent may have and in allocating responsibilities to that member of the family who is best suited to it.  This may be not only the father or the mother but a sibling or even grandparents.  In joint families it may be any one who is part of the extended family.  What parents can do will also depend on their financial status and their educational and socio-economic background.
	An honest face-to-face discussion about the family members' own abilities and skills will be needed before they can decide on how exactly they can be involved.  An exercise in self analysis can identify their skills and their strengths.  No one expects parents to be experts or have all the answers.  No one is asked to be a SUPER MUM or a SUPER DAD.  But the first hand experience they have of living with a child with disability will be invaluable.  Making an assessment of family strengths is therefore an extremely useful exercise.
	Family strengths will include the total hours which family members can give to the training of a child with disability.  It will mean identifying which member of the family has the necessary skills which will most help the person with disability.  If the mother takes on the responsibility of working at fixed times with the child with disability, then another member of the family can take on the chores of shopping, for instance.  Even younger siblings can help by doing the simple tasks preliminary to cooking, like cutting up the vegetables or washing up.  The men in the family can take on the responsibility of providing a recreational outing for the child thus giving the mother a break.  Hence family chores and responsibilities can be divided up among the family members.
	Lakshmi, a sibling of a speech and hearing impaired boy with mental handicap is adept at using left over pieces of coloured cloth to fashion colourful mobiles for her brother's crib.  Broken glass bangle pieces are bent into semicircles over a candle flame to make many interesting play materials.  These are used for the cognitive training of the disabled child and the other non-disabled  sibling as well.  Lakshmi's contribution and the strength she gives to her family is her creativity.
	One cannot emphasise enough the need for all family members to pull together.  Husband-wife relationships within the family will have obvious repercussions on the development of the person with disability.  

Working Together
Parent-professional partnerships form the core of any attempt at parent involvement.  When professionals respect the parents' viewpoint, they are listened to more willingly and parents benefit from their expertise.  But sometimes parents may not agree with the decisions made by the professional about training programmes.  Family needs may dictate more urgent priorities.  In our group discussions with parents, the need for the time-consuming jobs of feeding and toilet training were almost always seen as priority but academic skills were not so important.  
	Ravi, one of the children in our centre was being taught to dress himself.  The parents, however, insisted that he should be taught to feed himself first.  This was an activity which took more time and since both Ravi's parents were working they did not have enough time to feed him in the mornings before they left.  They were not so concerned about Ravi learning other skills.  Discussing with the family what skills will be taught first and how much of the training they themselves will be willing to undertake is an essential step in obtaining the cooperation of parents.

What Kind of Support do Parents Need?
Parents who have very minimal educational qualifications respond best to a training programme tailored to suit their specific needs.  This may be once a week or a few hours a day depending on how much time is available for attending such sessions.  Those with more education may expect more formal training with plenty of opportunities for discussion.  Parents who undergo such training do feel a sense of confidence and this helps in coping with their own child at home.  They are also better equipped to face confrontations at home or from the community.
	Sometimes it is difficult for parents to make time for formal training.  With these parents, even coming to the centre and observing a class in progress and the way the teacher handles the child, can provide incentives for a greater participation.  Obviously the process of engaging the parents will be longer but the end result will be the same.
	It is only when parents have had sufficient experience working with their own children that they are ready to take on responsibilities outside the family.  The best advocate for parent involvement is another parent who has trod the same road and found strength and confidence to continue in spite of the odds (see chapter 12).
	In a country like India, and perhaps elsewhere,  the insufficient facilities for training and services indicate that parents should be involved in service delivery.  All parents do teach their children.  Is the concern realistic that parents of children with disability may unknowingly take on the roles of therapists and teachers?   When the children are normal no one questions the relevance of these parents teaching their own children. Why then is there a reluctance to involve parents of the disabled child?

Benefits of Parental Involvement
The infant and preschool child cannot do without the support of parents as their care givers.  It is to the benefit of both parent and child, to equip parents with the skills to provide such support.  The vast majority of parents in developing countries are not involved in service delivery because they have not been inducted into programmes where they are an integral part of services.  Their experiences are not mobilised and channelled into services they can perform.
	Perhaps one reason for this, particularly in India, is the aura round the term "doctor" or "professional".  These experts are supposed to know all the answers.  Another reason, mostly in families who are poor and uneducated or marginalised in some way, is the lack of education and information on disability.  This, coupled with the attitude that "doctor knows best", prevents parents from involving themselves.  Parents can in fact play the role of advocate, help in special education centres, organise parent groups, and become active partners in NGOs working for disabled persons.  This has been demonstrated in many countries and one of our successful community workers is a parent. 
	In developing countries, the opportunities for parent involvement is not structured and hence not a vital, pulsating movement which can perform near miracles.  Tapping parental resources will provide a wealth of committed and dedicated individuals who can work shoulder-to-shoulder with the 'experts'.  For those of us who make do with insufficient equipment, material and professional supports, 'parent power' in service delivery for persons with disability is the obvious answer.

Acknowledgement

	Photograph of Saroj and her son supplied by the author.

Pramila Balasundaram has over twenty years experience in organising programmes for children with mental handicaps.  She trained in Germany under the sponsorship of Lebenshilfe after completing a postgraduate degree in English Literature.  The  motivation for her career change was a niece who had Down Syndrome.

Contact Address 
	SAMADHAN
	J-32, South Extension Part-I
	New Delhi  110049, India