This week we have a panel to discuss broadening the scope of DIR/Floortime to a larger audience. After attending the 2020 DIR/Floortime conference presentation entitled, Prospects for the use of the DIR/Floortime method in the child palliative care system by two psychologists from Belarus: Anna Garchakova and DIR Expert Training Leader Elena Akulova, and Dr. Gil Tippy‘s presentation about ‘Good Education’ (which included an example of graduating professionals who no longer have the capacity to think, including doctors–podcast coming soon), we decided to do this podcast about how the Developmental, Individual differences, Relationship-based (DIR) Model could be integrated into the field of palliative care, and medicine in general.

Today’s guests

We welcome back Dr. John Carpente, an Expert DIR Training Leader, Professor of Music Therapy at Molloy College, founder and executive director of the Rebecca Center for Music Therapy, and founding music therapist and creator of the DIR/Floortime-based music therapy program at the Rebecca School in New York City where he participated in weekly supervision and case conferences with Dr. Stanley Greenspan

Galina Itskovich is a DIR Expert Training Leader, Clinical Consultant with the Interdisciplinary Council on Development and Learning, and a Clinical Social Worker in New York City who works with different populations, including children and adults both on and off the spectrum. Dr. Beth Ammons is a hospice & palliative medicine specialist in Missoula, Montana who started in family medicine and has spent the last 18 years in hospice care, continually working to add the element of palliative care.

Building Relationships in the Practice of Palliative Care using DIR/Floortime

by Affect Autism | affectautism.com

DIR is a way of ‘being

John starts by stating some of the misconceptions of DIR/Floortime: that it can only be done with children, only with autistics, or that it’s only on the floor. John says it’s not specific to a particular population nor group. Often in medicine there can be a prescribed way of being with people and the Relationship doesn’t really matter. DIR has a lot to bring to medicine. DIR is a way of being with people, of being human. Although it can be playing on the floor, it’s more a philosophy, John explains. It’s a philosophy that’s geared around how to relate and communicate with people, even beyond the clinical setting, including providing respect for others.

Dr. Carpente is mostly worked with autistic children where we look at the ‘I’ to determine what’s getting in the way of them relating and communicating with us through a wide range of experiences and emotions. This can relate to anybody, John continues, so in the context of palliative care, we look at what’s going on with the patient. Have they changed their identity now that they have this disease in their blood, for instance? What’s getting in their way of being relational and getting to deeper significant moments of relating and communicating with their medical team or their family members?

This is where the medical professionals can train or coach while being with patients. Dr. Carpente teaches at Molloy College where he runs a clinic, but the college also has one of the top nursing programs in the country and each semester they invite Dr. Carpente to speak to their nurses. They say “We don’t work with autistics“, John tells us, but DIR/Floortime aligns nicely with their family-centered approach to nursing. John spoke with them in December about how the DIR model can be conceptualized in hospitals, in palliative care, and with the elderly. When people hear this, John says, they think it’s about playing with toys, but it’s about relational dynamics. It’s a form of psychotherapy, regardless of whom you’re working with or the setting. It deserves a voice.

Family Dynamics

Dr. Ammons has been in family medicine for over thirty years. She explains that family dynamics can make or break circumstances of care level. In hospice, they work with a narrower group of people and families whereas palliative care is an umbrella over hospice care (where there is a prognosis of only six months left in life). A hospice team comes in to a family situation to stabilize it. The team consists of a doctor, a nurse who does regular home visits, social workers, and a whole crew of aids including musicians, massage therapists, and more. They work with the whole family because if the family dynamics are not stabilized, you can’t really take care of the patient that well. 

Working with family dynamics can lead to a greater quality of life, Dr. Ammons continues. This is about every one of us. Learning about DIR/Floortime energized Beth, who has completed DIR 101 and is now enrolled in DIR 201 (see our Products section for discounts on these courses!). The beauty of the DIR is that it’s for our whole lifetime, and about quality of life. Physicians can get stuck on how they communicate with people. This would be better with DIR/Floortime training. Neurodiversity couldn’t be more true at end of life, too, Beth explains.

Beth is currently working with a fellow physician friend who has Alzheimer’s, who initially resisted treatment because he had black and white thought. They started painting and had a celebration of life with his family where they shared stories and poetry, and he went from not being able to complete a sentence to using metaphor and making jokes. He was beaming the entire time his family was there. It knocked Beth back because she was seeing him as someone who couldn’t do those things. She is so excited about bringing this approach into medicine.

Tuning in to the Patient

During Galina’s experiences supervising Elena Akulova, who gave the presentation at the DIR conference, and another colleague in Latvia, both working in palliative care settings, it came up that people are being objectified: the patient is an object who needs to be rolled over, changed, etc. We need to find out what’s going on for the patient as they are in their existential crisis and losing their skills. 

Galina says we need to find that spark of interest by watching what they pay attention to. In social work they’ve been taught how to do assessment and pay attention to body language, facial expression, etc. DIR/Floortime fits in to this to explain why they do what they’re doing.

Galina offers that we need to use our mirror neurons to tune in with our affect. Trace the patient’s expression and mimic it. Down regulate them if they are angry, enraged or frightened. DIR offers all of this. It’s an entire professional philosophy and it’s important that we work on it together as an interdisciplinary team and also that we learn ourselves by reflective practice.

New DIR Publications

Mental Health: Global Challenges is a journal that is DIR-minded. DIR Professionals: Please submit your articles!

Akulova, E. (2020). Implementation of the DIR Model and the DIR/Floortime Approach in the System of Palliative Care for Children. Mental Health: Global Challenges Journal, 3(1), 17 – 20.

Itskovich G, Strale I, Cirule-Galuza J, Bulavkina K. (2020). DIR Floortime (D-Development, I-Individual, R-Relationship-Based) – Non-Directive Method Helping To Improve Communication And Develop The Emotional Intelligence. International Journal of Humanities and Social Science Invention (IJHSSI) ISSN (Online): 2319 – 7722, ISSN (Print): 2319 – 7714.

Bringing DIR into the Medical Model

How we work clinically follows how we teach, Dr. Carpente asserts. You can’t really teach empathy. When we say follow the child’s lead, it’s about trying to meet their affect and respond with true empathy rather than with a stock response. The person whom we are training plays a role, John continues. They have to become their own agent. We can’t just say, “When the person does this, you should do that” because then you’re just teaching them what you would do.

John says you want to try to help the trainee gather an understanding of what’s getting in their way of trying to pick up on cues or show more affect. Perhaps they have challenges in these ways, he says. Caregivers might have emotional challenges that need to be processed with. Galina brought up how folks are being objectified which is like people being reduced to their behaviours. Perhaps they might be having an adverse reaction to something. We want to work holistically, John says. 

John explains that it’s not about changing their lens necessarily, but how to help trainees expand their range of how they see things and how they locate themselves differently through this or that lens. We want to make sure we’re responding, not reacting, and that the response is not based on our own need as a caregiver or therapist, but on the need of whom we’re working with. In teaching this, John continues, it’s about the self-reflecting process for trainees. How is the trainee self-reflecting and how can we facilitate this? It’s a parallel process between them and whom they are caring for. We can only give as much as we are and as we know, John asserts.

It’s a profoundly strong way to bring quality of life to someone.

Dr. Beth Ammons

The Relationship is everything

Dr. Ammons says that the Relationship is everything. To have that kind of really positive relationship, you have to think holistically. Beth has had some days on call where it was hard. Her nurses were in the crossfire and she was regulating them and herself. She was using Floortime and it was very profound and powerful. That’s part of the reflection. Her training was more about being objective and identifying someone by their disease. It never felt to her like that’s the right way of taking care of people. So she really believes in the DIR Model.

Reflective practice

Galina asserts that this work changes you. The Developmental, Individual differences, Relationship-based (DIR) model has the tradition of reflective supervision going back to the beginning with Dr. Greenspan. In teaching courses, she is amazed to see other professions come in and see how mind-blowing it is for them to learn about the DIR model. She can talk about how it makes her feel, which is important. You go to your patient with all of your baggage, so by unpacking it behind the door and walking into the room as more patient-centred is a skill that has yet to be learned by many professionals, she believes.

It’s all about affect

Galina provided an example of how a client was complaining about how her medical team handled her Covid. Their “it’s in your head” attitude had her struggling for months with this concept of being defective. It’s amazing what our words, affect, and emotions can do to people. It can bring them up and treat things as meaningful and capitalize on what we have, or it can shut us down and rob us of what we have. They treated her client as much as they could, but they also took something away from her.

As Dr. Greenspan said, it’s all about affect. Galina described how we can create this interpersonal excitement versus de-validation, which is very judgmental and cold and cuts something off. It also damages the caregivers, Dr. Ammons says. Physicians have a high rate of suicide and she believes it is because of this idea of being objective. Physicians aren’t trained to wait, watch and wonder, and then join in. Dr. Ammons finds it rewarding to work with young doctors and nurses in specialties where there’s a huge burden of knowledge they are supposed to have by sharing this information with them. Bringing DIR in for the professionals will promote well-being for them as well as for their patients.

Supporting the caregivers

Galina adds that the professionals need to replenish what they have. DIR/Floortime offers that resource to get recharged and come back with some emotional energy and the ability to tune in and work with the patient where they are at, and a family in crisis who also needs us–perhaps more than the patient needs us in some cases. 

This is similar to how it might be the parents who need the Floortime more than the kids in order to accept their child, meet them where they are at, and be able to join them in our autism work. Dr. Ammons continues that her team tries to keep a broad look at things because how the patient is doing is reflected in the family. You need the ability to change and adapt. People don’t just sit there and behave in one way. As professionals, she says, we need to understand why so we can respond to them.

Individual differences affect the Relationship

Dr. Carpente offers that what gets in the way of a robust relationship could be the individual differences. When Beth spoke about her friend getting into abstraction, John explains, it’s not only a developmental milestone, but it deepens the relationship. You can relate at a deeper level.

Your ‘I’ could also get in the way as a clinician, John says. Being reflexive in the moment is about harnessing affect. You have an observing ego to always ask yourself if what you’re doing is based on the client’s need or your own. And when do you know when to stop following the lead, John wonders. Providing empathy can be done in a range of contexts, he says. Sometimes it might just be about catharsis, which is fine, but how can we try to make that more reciprocal, John wonders. 

It could be a learning moment to wonder what this catharsis is about, then in turn make it about what’s happening in the moment, between you and me, John explains, instead of what went on between you and your parent or brother, for instance. In this model, and in many relationship-based models, what happens in the therapy or treatment room is a microcosm of what is happening in the real world.

With children, what gets in the way of the relationship might be their sensory systems. For those with more control over their sensory systems, it might be emotional hurdles and these can affect our own ‘I’. John says we have to be aware of individual differences in ourselves. Defense mechanisms can come up as something that happens gets triggered in you. If someone throws a bedpan at you, it might not be about you. Or, John responds, it could be that you’re not listening so it could be a form of communication.

Respecting boundaries while providing support

Not all defenses are bad, Beth adds. It’s how someone is holding on to their truth, which is important. We’re not going to correct them and prove we’re right and they’re wrong. This can be a sticking point for a lot of physicians and nurses where they are seen as the expert. Beth says that you are the expert on what’s happening for you.

Galina says that sometimes in DIR/Floortime, we start to treat parents without them asking us to. We need to respect their boundaries. They came to explore with us how their child can be helped. This is the exploration, not treatment. And not every treatment needs to be about breaking something down. Defense mechanisms are like a storm door, but we need them. It’s a delicate dance how we balance that.

We can’t break down their storm door if they’re running to us for help, Galina continues. We need to find other ways of getting in, by working with the defense mechanisms to help them, not against them and not breaking down parents as we try to help children. And bringing hope to the situation, Beth adds. Often that is not a focus. Hope is powerful and allows change and adapting for all of us.

Hope is empowerment

John adds that hope gives you empowerment. He knows what it’s like to feel connected with people, which is empowering when he feels so helpless entering a hospital. You have control over something. Many hospitals have such a hierarchy where the patient is at the bottom. John gives the example of the movie Patch Adams. You can be with patients in a more level playing field and still provide them with medical care. It’s not about fixing them. They just need some patchwork. It’s about being with them along these lines and empowering them along in the process.

See the podcast with Dr. Gerry Costa about the process of formation in preparing our DIR workforce.

The shift is on the horizon

Beth took many trainings with Dr. Rachel Remen who has trained physicians and worked with patients. One of the cornerstones that she teaches is generous listening: put what’s in your head behind the door and be present. Your ‘stuff’ gets carried into the exchange if you’re not paying attention. She has wonderful books and Beth gives them to all of her professional friends.

We are creating the paradigm shift in autism and neurodiversity from behavioural to developmental approaches, Dr. Stuart Shanker’s team is doing it in schools with Self-reg, and now we want to see this happen in medicine. Galina says that Columbia University’s Medical School has a program in Narrative Medicine that is providing this shift: to be able to sit in with a patient and listen to the patient’s story, instead of the silent patient scenario. 

Part of the difficulty is the demand on the young doctors, Beth says. They’re on the hot seat and they’re missing lots of sleep. When Beth was training, she would help them regulate. And if they could regulate, they could bring that in with the patients. 

On a practical level, John adds that things like this podcast helps for awareness. Trainings should focus on this too. It will attract people who work in palliative care, oncology and similar disciplines. Once professionals take the training, they can become trainers and create courses in this area. DIR crosses through disciplines and populations. We need to create an awareness as a start.

Thank you to our participants today for discussing what integrating DIR/Floortime into a medical model would look like. If you have relevant ideas, comments, experiences, or questions about today’s topic, please feel free to put them in the Comments section below and I hope you’ll share this post on Facebook or Twitter.

Until next time, here’s to affecting autism through playful interactions…

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