Ummeed Child Development Center announces a workshop in Narrative Ideas and Practices.
The 2 day workshop is hosted by SAN-KER in Shillong on 2nd and 3rd May, 2018.
Details in the flyer below.
Ummeed Child Development Center announces a workshop in Narrative Ideas and Practices.
The 2 day workshop is hosted by SAN-KER in Shillong on 2nd and 3rd May, 2018.
Details in the flyer below.
Presenting from A Room Full of Stories, 2016 – The Special Something.
Jehanzeb Baldiwala and Raviraj Shetty (both thought partners and colleagues at Ummeed Child Development Center) are co-authoring a book called ‘The Special Something’.
The Special Something is a collection of stories that intends to honour and celebrate ‘little’ special things that parents do in their relationship with children.
Hear the story at:
Here’s Narrative Therapy at India, introducing the interview series, as a way to bear witness to and archive the unfolding of Narrative Ideas and Practices in an individual’s journey. Freedman and Combs once said, “Speaking isn’t neutral or passive. Every time we speak, we bring forth a reality. Each time we share words, we give legitimacy to the distinctions that those words bring forth.” With the series, we hope that sharing these influential stories will make possible to add richness to these distinctions, and pave way to alternatives and diverse ways of honouring and being.
Our first guest to the series is Dr. Vibha Krishnamurthy, a Developmental Paediatrician and Founder & Medical Director of Ummeed Child Development Center. She is also a great proponent of Family Centered Care, a philosophy which runs through all of Ummeed’s work, which has helped in building an ecosystem for the development of children with disabilities.
Her expertise in the field of developmental disabilities has seen her as an influencer and contributor in multiple forums, examples being, (i) Committee Member of the Disability Chapter of the World Health Organization, (ii) Member of the Task Force Constituted by Ministry of Human Resource & Development and (iii) Core Member/ Independent Expert on the Technical Resource Group, of The Rashtriya Bal Swasthya Karyakram (translated as the National Child Health Program) constituted by the Ministry of Health & Family Welfare Government of India.
Vibha completed the Mental Health Training Program in Narrative ideas and practices in 2015 and uses Narrative ideas in her practice as a developmental paediatrician. She is an avid reader, walker, Yoga enthusiast and a traveller!
Yashna: If you could start by sharing what drew you to narrative ideas? How did it all start?
Vibha: My training had me believe and value mental health of the families as a very important part of caring for a child with developmental needs. And it was very clear to me right from the beginning that there needs to be a Mental Health Team. But along the way, there were also ideas around care being family centered.
I don’t think I was ever comfortable with the “physician as experts” stance. It never sat well with me. I could see some of the practitioners, when I was doing my fellowship in the US, having a different approach to it. There were all these scattered ideas in my head. And then, I used to see what Shamin and Jeh could do with the families that we were working with, the first few people I worked with. And I could see what became possible for those families because of working with them. And they would…the very fact that they would keep coming back and they would see a difference. At the same time, I was also struggling to articulate for us what our philosophy is. How do we get people to understand what Family Centered Care means?
Very often, for example, I would observe somebody within the organization and find very well-meaning people who tried to tell parents that they need to be the therapists for their child. And you need to work with the child. “You need to work with the child like this, you need to do this”, and teaching the family. And getting frustrated when there were barriers like, there are financial issues or say there was maternal depression.
So, there was this also but the key reason I ended up doing MHTP, one of the reasons: the previous block, Peggy came and she did Outsider Witness practice and interviewed me. And (chuckles) the entire MH Team was observing. And I just went, sailed into it not knowing what to expect! And at the end of the hour, of course, Jeh cried (laughs). And I was completely freaked out because I had no idea why she was crying. But in the process, I realized what Peggy had done in that 45 minutes or an hour, was that she had elicited from me, things that I believed in or I valued. Even now, when I go back and read the transcript of that conversation, I am blown away about the things that I told her about myself. And I didn’t even realize that that had happened. I said, “Wow this is really big!” (laughs). And then when I did the MHTP, that was a different story because that opened a completely new dimension for me. That’s the story about how I learnt about narrative therapy.
Pravin: And what has been some of the key ideas in narrative that have particularly struck you and guided you in your work with children and families today?
Vibha: When I first joined the Mental Health Training Program, after the first block, I was really upset with the Mental Health Team and I said, “If you guys knew all this, why didn’t you tell us before?” (laughs). I felt, here’s a way of articulating what I was struggling to articulate. So when SuEllen Hamkins had come here, it really resonated with me, what she was saying. The kind of clinician that I wanted to be, the Narrative course really helped me articulate that. It gave words to what I wanted to be. And that was the most important thing that I took away from the entire training.
What are some of the key ideas…um many things right? Beginning with double listening, going on to… what really drew me to it was the whole ‘decentered but influential’ position. There are many other things that excited me that I use even in day-to-day practice. So initially, I would say that it was hard. Because I come from a branch of practice which requires quite often for you to be giving information. It is the expectation of you as an expert. At times, you have to be directive also. But, to marry that with the limited amount of time that I have and to use an approach that is still respectful of families, engages them in decision-making and (you know they wait a long time to come see me). I want that experience to be an uplifting one. To leave the room with hope. And leave the room feeling like “I have a sense of control over this”, is really what one is hoping to do as a clinician.
And it’s been a struggle for me. Because initially when I did the course, I used to get frustrated by the fact that I see my patients so infrequently and I have these conversations, once in three months, once in six months. Sometimes, once in a year. And I used to feel, “What can I possibly do in that one hour or one-and-a-half hours, that I have infrequently?” But over time, I think I’ve learnt to pick some things that I can take with me to the clinical setting.
Pravin: You talked about marrying the approach and paediatrics in your sessions. Could you elaborate, if possible, how do you manage to do that?
Vibha: Firstly, the little things have been very helpful. Changing how I speak to the family about… “Tell me your concerns” is how a physician begins. “Tell me your problem” “What’s the problem?” “What are your concerns?”
And to begin instead by saying, “What are your hopes for today’s visit?” has been itself a game-changer, in terms of how I talk to them. Another example is, when I am asking questions… I’ve always believed in a strengths-based approach. There is a column in the paediatric intake which says ‘child’s strengths/family’s strengths’. So when I would try to elicit strengths, I was often greeted with silence. And then there was…it was really hard because…not because the family doesn’t know of the child’s strengths, I think it’s more because they hadn’t come prepared with thinking about answering the paediatrician with answering that question.
The Wonderfulness Conversation has really helped in that. “I get to know Rahul only through these sessions and if we could spend 20 minutes of you telling me about wonderfulness of Rahul, what would you say to me?” And families become very animated and excited and are able to talk about it. And give examples and that I find very useful.
I’ve used externalizing a lot and in fact, that’s what I begin with. Because families are most comfortable honestly beginning with their concerns say, “I’m worried about his attention” and “I am worried that he’s really an anxious child” or “I am worried that he’s a slow child”. And then when we explore, “What does this slowness look like right? And when are the times you don’t see the slowness?” It really leads to different things altogether.
Then she gave lots of examples from his day-to-day life. His social, his empathy, times when he had what you called “common sense”, which is not so common. He’s very pragmatic and practical, responding to something. It also emerged that he was visually way better at problem-solving than he was verbally.
And none of it was incorrect! She painted a very realistic picture of what her child was able to do and all which she saw was “hoshiyaari” (smartness) was indeed his hoshiyaari (smartness). Then they were able to talk about when do you not see it, and she said, “I don’t see that expressing itself in academic performance”, she herself spoke about limitations because academic achievement and what she could do, which would leverage his hoshiyaari in that space.
So I think it’s helped me to have very difficult conversations with people, where I could take them to places, I would’ve struggled with, seriously. In other words, initially, I tried to fit my practice into narrative therapy, which was frustrating. But when I tried to fix narrative therapy ideas and practices into my practice, that was helpful. So I said okay, this is it! I have to do all these things. I have to find out what the issue is. I have to find out, you know, what the school is saying, family is saying and so forth I have to make a diagnosis. I have to tell them the diagnosis, I have to do all that in the context of being family centered, strengths-based, and you know, all of those things. Then I was able to use the narrative ideas to inform that.
Yashna: And are there times when you hold on to some of the ideas, or some of the little things when the struggle seems to take over? Since you spoke about the time limitations, you spoke about how you need to bring in other conversations, what do you then hold on to, to keep it going in the way you would want it to look like?
Vibha: You know, I’ll give you an example. This Tuesday, a colleague was observing my session. She was observing me, while I was seeing a patient of mine who’s 18, who’s now become 18 and I’ve known her since she was little. She’s a girl with borderline intelligence and now she has obsessive-compulsive symptoms. I realised that I probably confused the heck out of my colleague (laughs), because I was switching between various maps.
And we started out with the mother, and then she spoke about the child’s sensitivity being the reason why they had come. We talked about the sensitivity, and you know, we talked about what she was calling the sensitivity, where they see it, we got into the history. We began with the externalizing map (chuckles) and then we started speaking about the times when the sensitivity was not there. So the sensitivity, what they were calling it, they managed to then convert it into “sensitive thoughts”. Because what they were, were actually obsessive thoughts, which they were calling sensitivity.
Then we spoke about the times when it was not there. Then they started getting into, you know, the unique outcomes. In between that, we spoke about some of the things the mother had done to help her and we spoke about some of that and she said…you know they were a middle income family um… suddenly she said something about getting her to cook and how she is able to make Maggi noodles by herself. Then I asked her about, you know, how did she learn that? How did she learn to make a meal? And she said, “No you know, she’s really good at that”. No, but how did you manage to get her to learn? She said, “So I would allow her to be in the kitchen and then she would watch and she would ask and I would give her an opportunity. If it spilled, I would say that’s fine”. And I said, “Oh it’s important to you to say that it’s okay, it’s fine that she makes mistakes?” She said “Ya, everybody makes mistakes and it’s important that they learn that it’s okay to make mistakes”. And she said something really nice about, “In life you should experience every colour that there is.” And she said it in Hindi but I was very intrigued by that sentence, so we picked that up and I asked her as to why that was important to her in her life.
And then we spoke about the medication. We had a whole conversation around medication and her fears about the medication, hopes from the medication, what she hopes that it would make possible for the daughter. And uh I did everything I wanted to do (laughs). I found what their hopes were for their daughter, what she had been doing so far, what she thought of medications and by the end of it, they were comfortable to give the medication an another try. Um and I spoke to the girl also and all this happened in the span of an hour where I did I wanted to do. So my colleague was probably wondering what is going on (laughs). For me, not able to follow them through to the end but I think I am able to use elements of it which serve my purpose. Quite often.
Pravin: And what has become visible ever since you’ve been using narrative ideas with families? Or what are some of the things that are different in your work with them?
Vibha: So I see very few patients now unfortunately, I see only about 4 or 5, a week. And it’s been a loss for me not to see more patients. And to have to deny that. And there was a time when I struggled so much that it was, I would actually have to say, “Oh god I have to see a client!” you know, because there was so much more to do. But now I am not feeling that so much, thanks to the training. That’s part of the reason it’s eased a little bit of the burden for me, doesn’t feel like a burden.
But one thing I can say is that it has increased my enjoyment of the sessions. It’s allowed me to be curious about people. About really finding out why they are the way they are. What makes them do the things they do. I mean, I’m just amazed by the families we see. Every story is just worth writing a book about!
There was a book I read by one of my favourite authors, Atul Gavande. And he makes a recommendation in the end to physicians, which says, “Ask at least one unscripted question every time.” And it’s allowed me to do that. So it gives me that liberty to be that way. And I think it’s allowed me to bring myself as a person into the session, other than as a physician. The thing that America Bracho went on about that you can’t leave yourself outside the door, you bring yourself in, when you go into a clinical session. And it allows me to do that and use some of these practices.
Yashna: What difference it might have made to the people you consult with, having these ideas to guide you?
Vibha: I really don’t know (laughs). I don’t know if they…I don’t know if the families feel differently. I think I know that I connect with kids and having the conversations with children… I, at least, enjoy it. Since they want to come back. I am assuming that it doesn’t seem burdensome to them either. I know that it’s some of the things that I have used that had made it possible for them to talk about things that they would otherwise have found difficult.
For example, talking about ‘strengths’ is easy for a certain kind of child, a lot of the kids that I see have not had the conversation with anyone at all. I can give you an example of a 16-year-old girl I saw with Cerebral Palsy and she spoke about her sister very warmly and said “She’s my best friend and I tell her everything and she encourages me in my art. I am so glad she’s there”. So we actually did a re-membering conversation about her sister and when we got to the point when we spoke about, “You know, well, if your sister was sitting here, what would she tell me about why she enjoys being with you? What are some of the things about you that she enjoys?” Then she was able to tell me some of the things about herself, about how she is loyal, about how she can keep secrets, so you know, it was really interesting. It made possible for conversation in a way that it would not have been possible. And umm… I’m taking a guess at what it makes possible (laughs).
Yashna: So I know you spoke about this, the position of de-centred yet influential and what are your thoughts if you could say more about why that has particularly struck you and how is it like to navigate through other positions when you may be required to do so?
Vibha: Hmm. It’s always a struggle. I think acknowledging the struggle is important. Making judgements about when you need to be which, is also important. If a family is asking you, “I feel I don’t know what to do in this situation, you need to help me make this decision”. It’s not uncommon for me to hear a family say – “Will do whatever you say doc”.
Umm…so how to frame that conversation in a way…I am influential and I do have thoughts about what might be the best at that point of time. To help the family participate in that, to participate in the decision that feels comfortable. If I feel, for example, when we’ve reached a point when it’s really important that the child has medications, then I might talk about, “What would we need to do more for them, more strongly?” About having to use medications…so if I can buy them two weeks, that’s fine. “Would it help to talk to other families? Can we do more reading about it? Can we discuss it again after you’ve spoken to your mother-in-law?” So you know, we have some of those conversations.
All it does is takes more time. May be takes another visit, but this is my personal opinion that at Ummeed we’ve probably a better compliance rate for medications. I think. Because we have some of these conversations around medications [of course, it is entirely possible that that ones who decided not to take did not come back. Have to go around looking for that data (laughs)]
To balance that is always a struggle but I like to acknowledge that struggle for myself and say, “Yes, it’s a struggle but you’ve got to do it”. But you’ve got to keep trying. So I keep trying! That’s pretty much how it is…I think, the word ‘influential’ is not in doubt and we have to accept that and yes, that’s why the family’s here. Because they value your knowledge and expertise. How to use that influence in a way that still allows the family to be in centre stage is always a struggle.
Pravin: You mentioned about ‘marrying the idea and the field’ and you also mentioned about ‘to keep on trying’, what are the things that will become possible if you continue on this journey?
Vibha: I think, that working with families in this way makes it possible for those of us at Ummeed, to make this the norm. Make it a movement. That, it is possible to be influential and yet have families make decision for themselves, made to advocate for themselves, have a sense of agency. What I hope the future will be is that this movement has a robust and is of that size that it no longer is an exception.
When I first came to this city (it was almost 20 years ago), it was a norm to have the family stay outside and the kid used to be in the room with the therapist. It was a norm for therapists never to have had that conversation with the physician. The first time I called up the speech therapist, she was quiet for a minute and then she said, “This is the first time a physician has called me up.” So those things were unusual.
Perhaps, it’s very much still the minority but it’s still becoming more common. It is an expectation now that physicians will communicate and therapists will have families participate in care. Some of those things are becoming a norm. So I hope what will become possible is that we can influence more and more people to be the same way. To engage and have people we are working with as and professionals be part of a team.
Yashna: So Vibha, do you have any know-hows or messages for fellow practitioners who hope to use narrative in their work?
Vibha: Actually, I do (laughs)! I think, the biggest thing I have to say to people like me, who end up learning about narrative therapy, is not to despair that it will not be relevant to people. Because it’s…it’s a way of thinking! If you chose to do this or train in this, you already were thinking that way. This will help you articulate in what you are already thinking. And also, it will give you tools that you can use in what you were already doing. You were already using some and it will give you more tools. And you will keep adding to this.
And the value of the community! You get a community of people who think like you. And who you will learn from, who’ll teach you more and who you’ll have something to give back to. So I would say that the message really for paediatricians, psychiatrists, physicians, particularly, who practice like I do, is that it is relevant for you. Relevant and important for you to think about.
Pravin: How has it been for you to talk and reflect on your journey with narrative ideas?
Vibha: A very special thing about being asked narrative questions is that it bears witness to something that you’ve been experiencing and haven’t talked about, right? It’s fascinating to watch MHTP (laughs) because everybody is soaking it up, they don’t want to stop those conversations. You’re hearing and knowing way more that you ever have. In that way, of course it’s lovely to share with someone some of reflections and what I think it’s been relevant in my practice. So both those things have been lovely talking to you guys about and to share some of my experiences. Thank you.
Yashna & Pravin: Thank you, Vibha.
Yashna & Pravin are Mental Health Workers at Ummeed Child Development Center, working with children and families who experience disabilities.
We are waiting to hear your thoughts and reflections! Please leave them at the “Reply” section below.
It’s been a year ever since A Room Full of Stories – The First International Narrative Therapy Conference has come alive and seen a community of Narrative practitioners from diverse cultures, contexts of work and countries, joined together by the commitment of respectful ways of working with people.
Looking back today, it was an enriching space of vibrant conversations, storytellers, witnesses and co-travellers in exploring the narrative ideas.
Here’s the Keynote from A Room Full of Stories by the Ummeed’s Mental Health team with Jehanzeb, Jill, Daisy and Raviraj sharing stories of their work.
The I’m-perfect Fathers Group paper was published in the Indian Journal of Occupational Therapy and it was instrumental in representing respectful ways of honouring diversity and supporting fathers in the alternative narratives of fathering.
THE I’M-PERFECT FATHERS GROUP: A GATHERING OF FATHERS OF CHILDREN WITH DISABILITIES
Raviraj Shetty, Jehanzeb Baldiwala, Tanya Vasunia
Objective: The objective of the study was to explore the impact of sharing experiences of fathering by creating a support group for fathers of children with disabilities using narrative frame of reference.
Methodology: The participants were fathers of children with disabilities selected through pre-defined criteria. The group was conducted over six 2-h sessions held once a week. The group was cofacilitated by an occupational therapist and a father. The facilitator used the narrative frame of reference to support discussions around themes of fathering in each session. Post-intervention, a focus group was conducted to assess outcomes. The focus group was documented by audio and video recording devices. Thematic analysis was used to analyze data for emerging themes and to understand outcomes.
Results: Primary themes that emerged were (a) learning from each other’s experience, (b) redefining disciplining, (c) navigating through fatherhood, (d) the benefits of a nonjudgmental space, and (e) advocacy.
Conclusion: The findings identify fathers’ need for a space to share their narratives of fathering a child with disability. The study also demonstrates the need for therapists to engage fathers in the process of family-centered care and indicates that involving fathers could lead to better outcomes for families.
Key Words: Developmental Disabilities, Occupational Therapy, Pediatrics, Stories
Fathering occupations are identified as a significant aspect of men’s lives where fathers describe meaningfulness of occupations ranging from extraordinary journeys to the ordinary everyday activities of bathing, feeding, and doing math problems together.1 A recent systematic review of studies which controlled for maternal involvement and gathered data from different independent scores found “positive” father involvement associated with a range of desirable outcomes for children and young people.2
Substantial research, however, shows these fathers being ignored or dismissed by services and variously described as “the peripheral parent,” “the invisible parent,” and “hard to reach.”3-6 Dollahite states that father’s involvement is not well understood due to myriad reasons including historical focus on mothers and the understanding that father’s role is secondary by many care providers.7 Moreover, the traditional patriarchal Indian culture expects a father to be affectively distant and a stern disciplinarian.8 These beliefs create a stereotype of fathers as distant and disengaged figures.
Giving such fathers’ opportunities to discuss their concerns with each other could help decrease their sense of isolation, foster a sense of agency and community.8 Research has shown the importance of support groups when cultural norms and gender stereotypes make it difficult for individuals to reach out for help.9
Accordingly, a support group structure was used to create an opportunity for fathers of children with disability in an Indian context to explore their understanding of and diverse enactments of fatherhood. The support group described in this paper was guided using the narrative frame of reference with an understanding that our lives are shaped by the stories we create.10 The frame of reference invites people to tell or retell stories about the challenges and problems they encounter in their lives as well as the skills they are using to respond to these problems. The therapist within the narrative frame of reference is a curious listener of these stories and influences the development of these stories through questions and reflections.11,12
Thus, the objective of the study is to explore the impact of a support group guided by the narrative frame of reference on the fathers of children with disabilities.
Participants were selected from the center’s pre-existing database. Participants were initially contacted through email. Those interested were provided more details telephonically. Of 20 fathers initially approached, 10 expressed interest and 6 joined the group.
Participants were selected based on following criteria:
Ethics and Logistics
Care was taken to ensure confidentiality so that participants felt comfortable and safe within the group. The project was designed with supervision from the director of the mental health team. Each participant was provided with a consent form that provided detailed information regarding the use of the data and confidentiality measures.
Once the necessity for the group was established, a semistructured outline of the group objectives was created. The group sessions were held on Saturday afternoons for 6 weeks. The duration of each session was 2 h. After the first session, which began with introductions, each weekly session started with reflections fathers wished to share with each other. This was followed by a semi-structured question which had been created before the session within a supervision setting (Appendix A). Questions were designed to facilitate discussion and reflect on experiences. The questions were designed with the intention to develop stories of their skills, knowledge, hopes, and problems as fathers.
The discussions were scaffolded using additional questions, activities, presentations, images, and videos. The group was facilitated by an occupational therapist and cofacilitated by a father who was recruited through an interview process conducted by the lead author. After six sessions, a focus group that explored the impact of the group on the participants was conducted by the second and third author.
The focus group was audio-recorded and transcribed verbatim by the third author. Transcriptions contained accurate accounts of narrations inclusive of repetitions, pauses, and hesitations. The analysis was based on the semantic content of the interview. A deductive thematic analysis took place based on the area of research and the nature of the data.
The five major themes that were derived from the thematic analysis of the data from the focus group were as follows:
Learning From Each Other’s Experience
Fathers repeatedly reported the importance of hearing other fathers’ experiences and learning from each other. They talked about occupations that other fathers in the group were doing which influenced their fathering and created possibilities for new occupations that supported their fathering.
D: So when R presented about a journey that he and his son took. It was a trip that he and his son took together to the U.S. Right. And what came out was that characteristics uh, of, uh, of his son. The characteristics in Bombay versus in that journey were dramatically different, right. So, an environment change, you know, uh, it just came out that he was more self-disciplined.
R: There was the fact that whenever you know, try and raise the curiosity of the child, even with mundane daily things, that you know, you are driving down. I think that you were mentioning, *gestures to D* was that why is it more necessary to, to, uhh, drive slow in the rain. And, and you just make the child think. I have not started implementing that yet. So one thing that I need to do is, you know try and do that. Try and figure more interaction with my son. Instead of sitting back and being quiet. So, that’s another lesson to take away for me.
D: “Choose your battles.” Has really struck up a chord across, even the five, all the five of us when we were there. You can’t win all of them There is no point in winning all of them. So, that was one major learning across the group.
The above quotes highlight the impact and value given to each other’s narratives. Information and ideas were transferred between participants through these narratives. The idea of “choosing your battles” became a mantra for the fathers in challenging times.
This particular theme has strong links with Indian culture and the stereotypes surrounding masculinity. The idea of physical discipline, masculinity, patriarchal hierarchy, and fatherhood was intrinsically linked for some participants. Through discussions in the group, these ideas were unpacked and many fathers reexamined their ideas about discipline and its effects within the context of the father-son relationship.
Few quotes which highlight this were as follows:
D: So it is not necessary, one need not be very impatient for things to happen. So, for instance, I think one of my takes was that, so when my son was diagnosed uh, with autism. And uh, we started work on that, right. I was kind of an impatient guy. So, for me, it was a fine balance between hitting him and disciplining. And disciplining for me could get physical, right. So, giving him two whacks. Because of it, for me, it was also about popular perception, right. How he behaves himself when five people come. So, I can live with his hyperactivity. But, people are going to judge him. So, I wouldn’t shy from giving him a whack saying, “Don’t.” I was always trying to figure out that fine balance between treating him individually. But, I will also whack him individually. So that, I am setting the rules. After the father’s group, you know, I’ve just stopped hitting him or even reprimanding him very very harshly. Because when I heard, you know, R speak about his kid.
R: Violence is not going to. First of all is not good idea with anybody. Particularly not with these kids because, um, you know you, can hit somebody, and reprimand him. And hope to correct that mistake if they did it intentionally or did not pay attention to… Suppose he’s done something to reprimand him and he does it again. He’s done it intentionally. You reprimand him. You hit him. Maybe he is going to change. But, some of the challenges that our children have…is, is, is you know, he may repeat that mistake involuntarily.
P: For, for me, complete stopping, was a result of this group. I never thought that I was on the wrong path. I might not have taken such a radical approach of, not, matlab, minimizing my whacking to 99% you know, down. Had it not been a part of this group. We figured out that there were different approaches. The realization that repeated mistakes may be a consequence of their children’s disability marked a turning point in participants understanding of discipline. After this reexamination, many fathers reported a difference in their relationships with their children. They noted that they were able to find creative ways of disciplining rather than using physical methods which lead to a relationship filled with conversations, laughter, playfulness, and understanding.
Navigating Through Fatherhood
This theme was prevalent from the beginning of the group. Many fathers recalled in the focus group that they had enrolled simply to see if they were fathering “correctly. Navigating through fatherhood can be considered an overarching theme. The group was brought together by their quest to understand what makes a perfect father. Each dilemma and situation which was discussed by the fathers helped them reflect on and embrace their journey of fatherhood. Some of these are illustrated in the quotes presented below:
R: “But where I think it changed, was with D’s presentation where we started talking about our own children and our journey with them. You know. And, uh, D did, then I did, then P did. And, we suddenly realized that it’s not about question and answers. It’s about learning on the go.”
P: Patience on the journey. I mean, I, uh, I never spoke about this. But, I just simply felt that consistently, all of the three of us have just. Whether we were violent, or whether we were, uh. At least we had the good intentions. But, we did not carry it through. And patience was the biggest vehicle on which you’re supposed to, drive on. And all, all three of us have just realized we need more and more patience with ourselves and with the relationship with our children.
Benefits of a Non-judgmental Space
Having a non-judgmental space was another major theme that emerged from the focus group. To have a space where fathers can share their experiences without judgment was described as imperative to the group’s functioning. This allowed the fathers to share their fears, worries, and mistakes openly.
As P says, “It’s not that the father does not want to get involved. A father wants to get involved but doesn’t know how and what we tried to do in this group is that just learnt the fact that every body is wanting to kind of, you know. The father is positive. And by default it is negative. Okay. Just they don’t know how. They don’t say. Don’t know how to do it. Here is a space where we spoke to each other. Means here, I spoke more than whatever I speak at home also.
This non-judgmental space also allowed participants to discuss both their preferred stories and problem stories.
R: See, uhh, I guess, the, basic thought was that, I was hoping to be a good father is…is what I was searching for. After coming here, I realized everyone is on the same path. So, I started enjoying the journey.
This non-judgmental space became an important step toward the group’s collective narrative. This theme helped the participants realize that “At the end of the day, we are all in the same boat.” Fathers were able to discuss what “being a father” is about and to come to terms with the fact that there is no such thing as a perfect father. A few of the quotes from fathers that support this theme are as follows:
P: Uh, no. Not hoping for. But, well, I was hoping for “being a father.” “How to be a good father,” or “What are the experiences of being a good father.”
D: Speak about ours, about the mess that we are in.
The fifth theme that emerged was advocacy. This has significant implications for the group’s progress. The ability to look at the macro rather than the micro suggests a shift in thought process and ideology.
D: You know, certain, some of our learning was, could be shared. You know, could be adapted, adopted by the other fathers.
R: You know, apparently you are targeting the mothers only. Primarily, the mothers. But, if the mothers are doing it correct, the fathers are screwing up. Sorry to use the word. That’s half the battle lost. So, you need to get the fathers. You need to get the. You need to encourage the fathers to get their act correct. You know, if you really want the children to flip.
Advocacy, in particular, displays the ability to create a different type of narrative.
When the group discussed how fathers need to be targeted more, it was an example of how important advocacy is for the group’s ability to look back and learn from each other’s experiences and journeys.
While discussing their journey as a group, one of the fathers commented on how this group was history. This observation is powerful given that this was the first father’s group in the history of the center.
The discussion in this paper centers on highlighting the processes that supported the themes that emerged through linking of lives of fathers. The findings of this exploratory study clearly identify fathers’ need for a space to share their narratives of fathering a child with disability. Using narrative frame of reference made it possible for the group to explore the fact that the fathers are constantly using creative ways to overcome some of the problems that are posed by the disability in their child’s life.
The narrative frame of reference’s aim is to focus inquiry on alternate stories or ways of responding that are separate from problem stories.13 This helped guide discussions focused on ways that fathers were responding to their children and steps they were taking to build relationships with them rather than focus on stress/coping. Sharing stories helped fathers recognize that their intentions for having positive relationships with their children were being respected and they could discuss hopes for their children, some of which were shared by other fathers. Linking lives in this way can support creation of connections that can be viewed as what Stern called, “shared feeling voyages, a process whereby moments of meeting with others create experiences that are personally undergone and lived through the present.” Shared feeling voyages open new possibilities by putting in question the established nature of relationships which may not be a complete truth.14
The second important aspect was that the therapist maintained a position of curiosity, staying de-centered yet influential. This refers to a position where professional knowledge does not form the center of the learning. Rather what remains at the center of the support group are the skills and knowledge that the fathers bring to enacting fathering and their unique hopes and intentions for their roles as father. The therapist is influential in this process through the use of questions that uncover skills and knowledge that fathers already have which can be used to address the current concerns.13
As a result, this group collectively expressed a desire to move toward more individual parenting and disciplinary methods that were responsive to their child’s unique needs. One of the outcomes that resulted from this was that the fathers came together to redefine what discipline meant to them, how they would like to perform this occupation going ahead and the stand to refrain from physically disciplining their children.
Another process that facilitated the themes to emerge was having the father of a child with disability as a cofacilitator in the group. Inviting a father of a child with disability to cofacilitate the group contributed toward creating a safe, non-judgementalspace in the support group. His having similar lived experience ensured that space remains free from “professional judgment”and that fathers feel safe to share feelings of doubt, mistakes, or raise any questions. This gave fathers the opportunity to share diverse enactments of fatherhood.
What also emerged from this combination of the therapist’s de-centered position and the presence of a peer consultant fits with Bonsall’s description of advocacy where fathers move from extending the enactment of fatherhood from caring for his own child to caring for children in general.1 The fathers through their sharing came to the agreement that what they had learned was relevant and could be shared with a wider group of fathers parenting children with disabilities. These could be “adapted and adopted” by the other fathers and become a way to further way to link lives around shared experience. As described by one of the participants, “every father should be given an opportunity to think about what the disability means for his child and to clarify what he understands. A chance to understand what his contribution to the child’s journey can mean and the importance of this for the child’s development would be a significant start for most families.”
We conclude that creating a support group for fathers of children with disabilities using the narrative frame of reference helps fathers have agency, a sense of community, and reduced isolation, thus participate in their child’s development.
Despite the fact that the sample in this study was limited to six fathers of children with disabilities who were from an urban English-speaking context, for therapists and professionals working with children with disabilities, the group highlights the importance of engaging fathers in the therapeutic journey of children with disabilities.
There is scope to further explore the journeys of fathers from non-English speaking, rural, and lower socioeconomic contexts. One of the hopes for sharing this work is that the ideas shared and the themes that emerged might interest occupational therapists in India to provide similar platforms and opportunities to fathers.
We would like to thank Dr. Vibha Krishnamurthy, Medical Director, Ummeed Child Development Center, for encouraging us to explore newer clinical territories. Special thanks to the fathers participating in the group for allowing us to share their journey of fathering.
How to cite this article: Shetty R, Baldiwala J, Vasunia T. The I’m-Perfect Fathers Group: A Gathering of Fathers of Children with Disabilities. Indian J Occup Ther 2017;49(1): 29-33.
Session number Question/topic of discussion
1 What are some of the hopes you have as we go along the six sessions? How would you describe your child, the way you want him to be known by people around you?
2 What are the things you do together that makes both of you happy and engages him with you?
3 What are some of the ideas you have around disciplining?
4 “Being the perfect father”
5 “Is it my child or is it the disability”
6 What are some of the learning from this group sessions? How do you see yourself using them in the future?
The Ummeed Mental Health Team is proud to announce ‘Negotiating Supervision’
Please read the poster below for course details.