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Parents Groups
Focus: Early Intervention
Topic Families
Mercè Leonhardt
Psychologist .
Co-ordinator Early Intervention Service
CRE Joan Amades, ONCE
Carretera Esplugues, 102 – 106
Barcelona 08034
Spain
34 93 280 48 49
The work with families of disabled Children is a very recent task. The dynamics of families are very complex and still we know very little about them. But, is an evident fact their request for help, the need to be accompanied, to be taken care from acknowledged setting of the disability .At the same time, they need to be contented in their anguish, to support it and also the anxiety presented, in an intensive and hard way from the very beginning and at the first adaptable stages parents have to do, after knowing the disability of the Child.
On the other hand, parents often show their needs of information about limitations produced by the disability /ies, but at the same time they wish to know the possibilities of the child and capabilities they present. They show their interest to know what type of resources need the baby or themselves as parents, interest that conducted them to the recuperation of their role as protagonists in the child’ life. The initial not knowing they could be able to feel like a threat in his personal confidence and an increase in his interpersonal and family discomfort.
On the other hand, we recognise a loss of organised fantasies that every parent shape for their child, fantasies that begin during pregnancy, but in an opposite way if they don’t receive adequate help they are going to substitute them for a non organised one.
Although, it was able to present a loss of emotional adult functions, those what push the emotional growing (Meltzer and Harris), like love, the hopes for the child and wishes possibilities, the content of anxieties that the growth of the child presents and the capability to think about everything that is going on and it is emotionally lived.
The family interactions after knowing the diagnosis will modify. After an intense emotional experience always are going to produce changes, then family uses to distribute their roles in order to deal with suffering, in a way that everybody could be able to cope internally.
In summary , we see which type of needs present families who demand a carefully attention, to accompany, and to support from the professional of Early Intervention, from different ways: individual and in a group.
Need of emotional support
Need to be heard, understanding their feelings, to content anxiety, to accompany in depression.
Need to support to recuperate self confidence and confidence in their capabilities to be parents and generate their own resources
Need to support to be able to think in modifying relationship that are going to change in the family and outside.
OBJECTIVES
Our objectives come from the own needs showed by parents attended on Early Intervention. Their wishes to meet other parents, in order to exchange experiences of children’s growth, share doubts, fears, questions, feelings, information, are some of the constant concerns they express.
Then our objectives are the following:
To favour the communication and the emotional process
To favour the mutual help between the group’s members.
The group favour the identification of emotions and feelings and the possibility to think about them.
To favour the parents’ role
To favour a time of listening and contention of anxieties
To create a symbolic space where communication between parents who share similar experiences be free and help them to elaborate process of mourning.
To favour the mutual help between the group’s members.
To give the possibility to meet into the group help to discover emotions and feelings similar to their experience as parents of a disabled child. The aim is to work the process of mourning mentioned before and the adaptation to the suffering reality they are living as well.
The group favour the identification of emotions and feelings and the possibility to think about them.
The groups are organised under a base of understanding, tolerance and identification of emotions and feelings lying under the words. Although, another aim we plan was to favour thought, help to think about those situations which they are and specially are worried about or feel very painful.
To favour the parents’ role
To promote the recuperation of parent’s role, to be able to organise as a family again in spite of difficulties and conflicts that suddenly raise and have to learn to live with and favour the relationship with their children discovering new ways of interaction in that relation.
To favour a time of listening and contention of anxieties
Favouring these attitudes makes a space of contention and definitely where it intends an understanding, it could name what is unnamed and favour tolerance of anxiety that one experiences overflowing when facing a disability and it will be the potential of adjustment or change.
In Early Intervention we work with different types of groups, like:
Parents of multidisabled children
Parents of blind children
Parents low vision children
Parents blind-deaf children, mental retarded children
Mothers and babies
Parents of children with these disabilities and at the same time there is another group with their children
Judgement in the organisation of groups
Judgements we follow in the organisation of the groups are those we deserve to assess the aspects to favour the relationship and interchange into the group. They are:
Wishes to meet other parents of disabled children
Presence of both father and mother (except in mother’s group)
Respect and listening to attitudes to different opinions
Some interest for other membership of the group
We present a parents’ group of severely disabled children that worked during a period of two years and a half. These periods of time were organised in courses, establishing a starting and ending point. The group was formed by five couples of parents. Four of them had a regular assistance and one a temporary assistance. All of the children of the group were attended in several Early Intervention Services of Catalonia and receive in the same time a regular attention to their visual disability. The therapeutic sessions of the group were every month and a half, except on summer holidays. The group was conduct by a psychologist therapist and a co-therapist.
Following our presentation, we show some pieces we select of a first session done by this group.
In the first sessions, we remark on the need experimented by parents to share with other parents their present situation: the reception of a diagnosis which impress emotionally themselves in a deep way, their feelings as parents and the perception about their changing feelings.
In the first meeting, the mother of a blind and very disabled child told:
Mother A: “My son, one year old, has a trouble, it’s a “lipothimia” or something like that. Actually he can see only light, he doesn’t support his head. He was born and remained in good health until four months. We didn’t realise he had any trouble. In fact, we don’t know what the child has,… but they are waiting for…”
We can observe there is confusion in the mother’s mind. She recognises the child has a trouble, but only with a temporal illness “a lipothimia”. The confusions invade the thought that is under an emotional shock, and a equivocation appears.
Also, denial appears with the aim to minor the impact produced by the diagnosis. Then, mother say: “They don’t know what he has but they are waiting for…” In her fantasy a extraordinary thing can still happen and the child might recuperate.
A second mother shows the diagnosis of her baby like that:
Mother B: “ I was very well during the whole pregnancy, it was great! And I didn´t smoke, not drank, nothing! And…You don’t know what could be the reason. My son has an Association of Charge, it’s difficult to see. He has coloboma that injures the eyes, a severe deafness. He has coanas’ atrophy and the heart is not OK. He is our second child and when he was born we observed that something had happened. He had a lot of mucus and breathing difficulties due to his hearing illness. Just as he was born, doctors took him away and made thousands of questions to my husband, not me. I realised my mother and everybody were very worried about the baby and then I thought some severe disability my baby had. They didn’t put my son on my body, by my side . I felt the heat of his body, here to my face, but I realised I had lost him, inside my womb, I noticed a big hole myself. When I saw him at hospital, for the first time, he was at a big distance from me, but I thought: you are my baby, my son, and I love you and we are following up together. This was the reason I was hurt by doctor’s words, he didn’t think about my place, I was the mother! At home I cried a lot, but when I went to the hospital I gave my best smile, to bring courage to my child. That Doctor, said to me; “Madam, I think you don’t see the reality, how your child is”. I answered vitally: I know what happens, but if I come here with tears in my eyes, I couldn’t help him. And I come here to bring courage for living. And, now I know he can be happy if we bring him a lot of affection”.
Thinking about her pregnancy, mother B idealises this stage of her life and at the same time she shows a feeling of guilt that parents use to cope with the disabilities of their child: “I didn’t smoke, not drunk… nothing! And…You don’t know what could be the reason. Then appears the suffering of diagnosis joint to the feeling of physical loss experienced “like a big hole in myself” into the mother after her son was born. Doctor’ words pronounced or felt by the mother like insensitive, open the recent injury that parents are in deep pain, projecting and moving their discomfort to that professional.
The mother also shows the feeling she experiences, the misunderstanding of doctors who, they feel, don’t understand the situation. Doctors say words one doesn’t want to hear and parents show loneliness in their decision and emotional effort that they are suffering.
Mother C tells: “ During the pregnancy they told me to relax. But I have other children and it was impossible and I ignored it. Later you think, if I had really had a break and did relax what would have happened, but now I can’t do anything.
If I had know! Actually still done it! She was a big premature baby. The hospital gave us the child after 4 months. She had a lot of breathing problems and she came out …which day? Yes, the 5th September. At the beginning you cry, but later you think about going on and looking ahead.
Again we see a growth of feelings of guilt every parent feels facing a very difficult situation: really they are trying to search for the cause of disability. To ask themselves about it, and feel an impotence that it’s not possible to change! At the same time it remains recorded in the mind this or those difficult days when they receive the diagnosis, ambivalent feelings experienced. In this mother we observe anguish feelings, fear but also joy for going home with the premature baby after she had during a long period of time in hospital. At home there aren’t incubators, oxygen, devices… not specialised professionals who can attend the child in case of an urgency. The person is alone to cope with internal or external difficulties which can appear. And, strong feelings of insecurity and helplessness appear.
Mother C. to the mother A: “Can your child hear well?
Mother A. Yes, very well. When he hears he put his head to one side. I read it, they change the position of the ear in order to listen better. My son repositions his right ear.
Mother C. Ours, when hi is are listening stops moving.
Mother B. Ours has a severe deafness. We don’t know how much he might hear. But we realise he can see more and more. Now he can follow his sister’ s hand at 70-80 cm. You call him and he looks at you, although we don’t know how it happens. If he sees in a clear or muddy way, he improves his sight a lot.
Mother C. Ours can hear but not everything. Only some sounds. Actually she begins touching faces, specially touching hands a lot. At the same time she touches and grasps her face with both hands.
Mother B. Mine does similar behaviour, looks at things, laughs, put his hand over my mouth, on my face.
Mothers tell disabilities of their children, but at the same time value answers observed and give a new significance. Nevertheless, doubts appear as well: they don’t know what children can see or hear, but is the relationship the best answer for them and all the mothers together sharing with hope. Children touching her face, her hands, looking at, laughing, touching , are aspects helping them really to discover their children.
Ending this session, told
Mother B. To me the most important thing is living day by day, living the present moment and to be happy. And also the child was. And.. he gives joy when you realise there are things he can associate . What he has is neurological.
Father A. And you find yourself giving relativity to things value before as very important. I have a shop with some workers. Sometimes they explain things that for you are not important, but now I can understand them better.
Mother B. Yes, it’s true they explain you things you think don’t have importance, but you really think the most important is to be happy now. Yes, we still don’t complain. I understand better pains of other people, you become more..human.
Father D. We have spoken about things we could never tell before.”
Mother B. express her wish searching for a normality, living the present without too much anguish. A searching for a normality with hope. Father A and mother B show the internal changes they are experiencing, they are living emotions and feelings that awake their sensitivity facing pain or worries from other.
At the end, father D . without telling many words during the session he has participated actively, thinking about the whole conversation. Because ending, he speaks about the importance of whatever people talked about: “We have spoken (all of us) about things we could never tell before” (It means: we were not conscious before)
Finally, we say when groups are ending, people always are establishing the benefit they feel as parents, to be with other parents sharing feelings, emotions and deep experiences, some of them may be, the most intense of their life, the emotional experience to be parents of a loved child.
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