#086 – The F Words – with Dr. Peter Rosenbaum, Danijela Grahovac and Andrea Cross

Genia:
Welcome to the Good Things in Life podcast. I’m Genia Stephen. Today’s podcast episode was recorded months ago, right before COVID hit. At the time, I was just getting into the research for my master’s dissertation. And this team that is speaking with me today on the podcast really inspired my topic and a body of research literature. That’s really helping to change the way that healthcare approaches childhood disability. My research for my dissertation is on how the experiences of parents in the neonatal intensive care unit framed their expectations about the potential for their child’s future. And the work of the team that I’m interviewing here on this podcast really started, or at least very much contributed to the beginning of an understanding of why the future and how we help parents think about their future really matters to health outcomes. The guests today are Dr. Peter Rosenbaum who joined the faculty of McMaster University in 1973.

Genia:
He’s been a professor of pediatrics since 1984. And currently, he’s a professor in the Department of Pediatrics and an associate member of the Department of Clinical Epidemiology and Biostatistics at McMaster University in Ontario, Canada. Peter co-founded the award-winning CanChild Centre for Childhood Disability Research, a health system linked to research, now recognized worldwide for its research and dissemination activities. Also joining me today is Danijela Grahovac. She’s a senior technical support analyst at CanChild and also the mother of a 17-year-old son with cerebral palsy. Danijela was involved in the school system in Ontario, Canada, and has previously done research on the use of smart boards for kids with disabilities. Danijela has been a member of the efforts in childhood disability research team since 2014. And last, but certainly not least we’re speaking with Andrea Cross. Andrea is a postdoctoral fellow at CanChild. She has both Master’s of Science and Kinesiology degrees. And in 2018, graduated with a Ph.D. in Rehab Science from McMaster University. Andrea’s doctoral research address dissemination of the efforts in childhood disability directly to families and service providers, and to explore the uptake of a holistic and health affirming approach to childhood disability. I hope you enjoy this really rich conversation.

Genia:
The first thing I would love it, the first thing I would love to cover is just an explanation of what are the F words and why do we need to be talking about them?

Peter:
I wouldn’t start there, only because the F words are meant to be examples of how to bring to life the World Health Organization, this framework for health presented first in 2001 as the international classification of functioning health and disability, or disability and health. And the framework is a bio-psychosocial framework, which links together a bunch of pretty obvious ideas in a way that isn’t usually obvious to people, except when you show it to them and say, well, yeah, we know God. And we say back, yeah, but you don’t do it. Um, and what we did just for fun, uh, was to try to illustrate and operationalize this framework, using some afterwords as examples of the kinds of things people might think about with respect to body structure and function. So we talk about fitness with respect to activity. We talk about function and we make the point that you don’t have to function nicely. I mean, sadly, at least two of us need glasses, but if we can see, okay, nobody gives a damn, um, we talk about operationalizing, the concept of participation by talking about friends and friendships, uh, with respect to personal factors, we emphasize fun to remind people that life can be fun or should be fun.

Peter:
And particularly for kids. And then with respect to environmental factors, self-evident, uh, F-word, there is family. Now, none of these is meant to be the only F word and we’ve had people hassle us because this, that, or the other F word, which was their favorite one. And if you give us any F word, we’ll tell you how it fits into the framework. We already are. Um, proposing, we added as a separate element, the idea of future, because the F word is framework or the ICF framework is a framework that describes the current situation. Then analysis of the elements that fit into a person’s current situation. Uh, but we want to remind people that children are in the process of being, becoming, and belonging and that future is essential to them in a way that it isn’t to me. Um, so that’s where the F words came from.

Genia:
Why, why do you think that it’s important to bring attention to the efforts, to the way that pediatrics approaches kids with disability and complex medical needs?

Peter:
Because the short answer is that, uh, was best summarized by a parent recently in a project we’re doing where she said you have textbooks. We have storybooks absolutely brilliant encapsulation of how I was trained to learn lot about diseases. Um, and sadly you, as a parent were trained to learn a lot about diseases because that’s what we talked to you about. We weren’t trained to think about child and family development. We weren’t trained to listen to parents. We weren’t trained to, um, pay attention to what’s working as opposed to what isn’t working. And so that’s why we think it’s, it’s profoundly important that we change the focus of the discussion.

Genia:
So how does a focus on F words, F words change the conversation in a really granular, you know, day to day way when you’re talking about health and health outcomes, how is it different?

Danijela:
It is very different. So you see, I’m a parent and my son is 17. Now he has a cerebral palsy, complex needs. And when you go to the doctor, as Peter said, you know, they are trained to look into the disease. So for example, um, we went to the kidney to urologist, right? And, um, he was treating the seizures, his kidney, kidney stones, and he gave us a medication that was closing the specificity [inaudible] okay. So make his whole body worse. So that is an example that you cannot look into the kidney on. You have to have the whole picture. That’s how we were going to treat well, right. You have to find a medication that will work for him because you know, the whole condition. So go a little bit more wider and putting a picture of the family, how that is going to work with the family, whatever you’re recommending as a physician. Right? So that is very important for them to see that, that, you know, and to hear that storybook as, so they can fit the treatment and help us choose what is the best for us and what is working. You can tell me, yes, you have to do 20 pushups and do the stretching and this and this and this and this. Can I fit that in my schedule? Can we do that? Uh, you’re not as simple as that.

Peter:
Related issues include the fact that we have traditional, we doctors in particular, but health professionals have traditionally told you what to do. I see your child’s issues. And here’s what you should do, whether they’re asking you, first of all, what your goals are, second of all, or first of all, what do you want to brag about people? Don’t ask you that then what are your goals and what do you want to do? You know, what’s, what’s important for your child. And then can you fit this into your, into your day? Um, so the approach, the, the F words and other things that we’re doing, we go way beyond where we have traditionally been without in any way, taking away the value of the medication for the kidney stones, but seeing it in a bigger context.

Peter:
And the, and the metaphor that I like to use is that if you go to the theater or you go to the opera and the soprano is singing, and the spotlight’s on her face, you see, you know, you hear this beautiful music and you see the soprano, the spotlight gets bigger and you see there’s some other people on the stage you say, Oh, there’s some other things going on. And the spotlight gets bigger and you see that this is happening in a cave or in a forest or in a castle. And suddenly there’s a whole, much, much bigger context to the whole thing. And that’s what we’re trying to promote is child in family, in community. And it’s, so it’s embarrassing to say it because it’s so obvious, but it’s not how people are trained.

Genia:
So I’m interested in, in your perspective, all three of you on the difference that starting from an effort’s framework might make in the communication of a diagnosis and in the conveyance of what that diagnosis means. So just if I’m sure Danijela, you have your own story. My one part of mine, um, is that I think my son was about two weeks old. We were still in the ICU and somebody had suggested that it was possible that there might be a genetic component to all the things that were going on for him. And so the genetics team came in and, um, they did a head to toe assessment and, um, you know, they picked, they, they, they felt like they sort of picked apart his body parts and his sums that I thought looked exactly like his dads went down on the, um, on the dysmorphic list.

Genia:
And the, you know, like all of these little pieces of my sweet little baby got, got picked apart. And then they said, you know, we think that, um, we think that your baby has XYZ syndrome. And here’s why we are very confident that that’s the case. Um, and we know that you have, um, you know, we know that you have a health background yourself. And so, you know, here’s some information, um, and they said, do you want to have him test it? And I said, well, um, is the, will the test results impact his treatment or his health outcomes now, or in the immediate future? And they said, well, no, not, not really. And I said, okay, well then I don’t really see any, I don’t, I don’t really say any, any reason to do it then. And they said, okay, well, this was on a Friday.

Genia:
And they said, okay, well, we’ll come back on Monday. Um, in case you have any questions and they left and I read the material and the material was as you in a previous email correspondence, dr. Roseman referred to the catalog of doom, there’s a list of the catalog of doom. And it’s in that list. It’s the, that he was going to, essentially in that moment, this is what I read. He’s going to be short, fat, stupid, eventually bald, possibly cancer written with a lot of bone deformities. So essentially in my mind, they handed me a piece of paper that said, congratulations, your baby is quasi Modo. And I grew up in a, like, I mean, one of the things that has just been a wonderful gift in my life is that I grew up in a disability, positive community. I have a sister with a younger sister with a disability.

Genia:
I kind of grew up among thought leaders. I mentioned. So like, I was not starting from scratch and this whole thing, you know, but I was devastated by reading this. And I called my, my mom and I was crying so hard. She couldn’t understand what I was saying. And she finally called me, calm me down a little bit. And I said, you know, this is what they said he has. And I was just so upset. And she said, Oh, for heaven’s sakes, Jean, I thought he was dying. Like, you know, get yourself together. This is not the, like, come on now, you know, better than that kind of thing. I was sure she hadn’t heard me because know, she hadn’t really heard how terrible this news was kind of thing. And of course she knew exactly what she did. She had heard me. Um, but that story, you know, my story is very common. They never came back on Monday, by the way, to answer my questions. I found out years later that they’d never come back because I didn’t want the testing. And so they figured there was nothing else to talk about. And my, my story is not unique.

Danijela:
Um, I had the same thing. They send me home, uh, Right. I didn’t have a pamphlet. Yeah. Don’t go in as Google. Right.

Genia:
I know.

Danijela:
Yeah. I went completely.

Genia:
But how might that have been different? Had that been, he doesn’t even have that syndrome by the way, but if the, yeah, so, but how the question is really like what interests me is the power of this framework to change that moment in the implications of that moment?

Peter:
Well, yeah, that’s a, that’s a complicated question, but I mean, the first thing to say is that I like to use a relatively straightforward example, not the complexity that you’ve described. You’ve just had a baby with down syndrome. Now, what do we know about down syndrome? We know that, you know, you have, the baby has a higher risk of having heart issues and digestive tract malformation and thyroid issues, and needing to have their hearing checked and needing to have their vision checks and so on. But remarkably, although everybody in the world with down syndrome has one thing in common, which is an extra chromosome. Your child with down syndrome came from you and your partner. And my child with down syndrome came for me and my partner and on and on and on. And all we’re doing is judging the book by the cover without making any, taking any account of all the rest of the input of that child genetically, before we even talk about environment and health and so on.

Peter:
And that is just fundamentally wrong ICF or no F words or no. And what we have not taught people to do is first of all, to communicate effectively. But second of all, to recognize the importance of looking at the whole picture, um, and you know, I could be on my soapbox all day, uh, and, you know, show till I’m hoarse and have done for a while. And it’s not making a big impact, but we’re trying, we’re trying to get people in our, in our department of pediatrics to teach people some of these ideas, so that the way they approach with, or without F words, the way they approach a family and a conversation like the disclosing conversation that you just reported are done more effectively.

Andrea:
I think in that beginning period too, it’s important that, um, you know, like you said, it was all, everything was focused on what your child was not going to be able to do. There was not any mention of the things that your child was going to do. And so that conversation would look very different if they said, you know, we’re looking at these different, um, things that are going on, but you know, your child is going to have a good quality of life. You are going to be able to participate in activities that are meaningful to you and your family. You know, you’re going to have a whole lot of support around you through, um, your friends, your family members, but also all of these different, um, community providers that are going to provide support to you and your family. Uh, we will look at environmental, um, items that we can put into place to help support you and your family.

Andrea:
And what w what would be, um, positive influences in that. We’ll also explore with you the environmental barriers that you’re going to face and explore. How can we overcome those with positive strategies? Like, I think the whole conversation shifts that if we’re not just looking, like you said, at the catalog of jam, it’s, can’t, can’t, can’t what the efforts about is it’s really a strengths-based approach. So it’s like it’s looking at, from the very beginning while your child is going to be, and the other thing is we don’t know right now, and we’re going to explore this together. Right? So, um, I think that the, you know, how the conversation is just framed is very different when you’re taking an F-words or an ICF approach. And even if you took the ICF and not the F words, if the physician was thinking, I put, okay, really, they’re really only focusing on body structure and function in that conversation there, they’re not touching on environmental or personal factors. What’s important to you and your family, and how is that going to impact, right? And so by taking that broader scope from the very beginning, that’s going to change your whole, um, perspectives of things, write on it. And we really haven’t done a lot of work with people in the NICU, or really early on in terms of introducing these ideas. And when we started on this journey, we actually talked about when was the appropriate time to introduce the effort framework, um, and what we,

Genia:
As a prenatal care provider, I’d like to put my, you know, my vote for the very first time is somebody, you know, discuss his pregnancy with them.

Andrea:
And I think that that’s great. And I think that, you know, we’re, we’re starting to go where you’re working with early years programs now. So when the children are two and three, but I don’t even know if we’ve had a lot of conversations, um, with that prenatal care or, you know, with the NICU, with nurses or anything, we haven’t gotten into that. But I think what we’re hearing from families and from yourself and from other families, you’re not the only one I said that right away, we could be introducing the, and it’s a framework of health. And again, what Peter, like we keep going back. It’s not the, the efforts is how we’re, um, transferring this information, how we’re framing the conversation. It’s the ICF, which is really is, is an impactful way of changing practice.

Genia:
Right. And can you just for listeners who are hearing about the F words in ICF for the first time, I know Peter, you explained the ICF, but Andrea, can you just re-anchor us for a moment in what that means.

Andrea:
The ICF stands for the international classification of functioning, disability and health. So we like to call it the ICF, or it is called the ICF. Um, and it was developed by the World Health Organization and by individuals from all over the world. Um, not just healthcare providers, policymakers, families, patients, everybody, um, and in 2001, this framework came out and it’s recognized as the framework of health for everyone. Um, and in the ICF, there’s five components and they’re all connected. I don’t know if you’re going to be able to show some screens while we’re talking about this, but that would be helpful. Um, so there’s body structure and function, um, which is looking at both the anatomy of the body, the physiological features of the body there’s activities, what individuals do. So we like to think of these, we’re doing workshops. We described them as the, ING worse eating, Talking, walking, right. Um, individual activities participation when we put those activities into life situations. Right?

Andrea:
So having dinner times together as a family, playing a sport event with the family, going to the play with family, going to school, participating in the classroom. Um, and then there’s contextual factors, which is a new, um, addition to the framework, looking at both the environment and the personal factors. So the environment looking at both facilitators and barriers, and that’s not just environmental, um, you know, that’s also attitudinal, facilitators and barriers, and then as well, personal factors. And so really that’s, those are the things that make you unique. What’s important to you, who are you as a person and as a family. And so we’ve embedded, um, the efforts onto the ICF framework and added the additional effort of future. So that we look at, as Peter said in the beginning, it’s the ICF provides a slice in time. What does, what does health look like for you right now? And we think it’s very important, especially working in childhood development field, that we’re also looking at the future in the future. It might be tomorrow. It might be later on in the day. It doesn’t mean that we’re necessarily looking at the long-term future.

Genia:
Great. And we can attach some links and resources to those visuals in the show notes of this episode. So if we’re thinking about, um, if we’re thinking about stumbling here a little bit, I guess one of the points that I think is really important that we sort of skirted around a little bit, at least in my mind, um, in the last couple of minutes, is that, um, two things, one, a lot of what we know about the potential of people with significant disabilities is based on, um, outdated historical data during a time when both medical care and community supports were either nonexistent, like just didn’t, we didn’t know how to help people, or they were based on a real deficits model.

Genia:
And so evaluating what somebody with a particular condition might be able to achieve. We may, we, we very likely have little or poor quality information about what’s possible. Um, and so when people are having conversations that are all deficit-based and people are saying, what does this mean? Um, I guess it’s not really a question, but it just draws to dress my mind. Um, this really important reality that parents have every reason to be, um, enthusiastic, that their child has potential regardless, uh, you know, potential for a good life with relationships and making a contribution to their community and growth and learning, regardless of what information they may have been told about what their child’s can’t or won’t do. Um, this is not, I’m not trying to be sort of like denying some of the realities of impairment in any, in any way.

Peter:
Could I, well, let me comment by saying that, um, I work in and have for a very, very long time worked in the field of developmental disability. Uh, what was that first word I disability, right? No, it was all mental. And, you know, when you, when I see you with your child, I’m going to tell you that your child is going to change and develop. I’m going to say with a wink that we’re going to take credit for all of it, because you’re getting fabulous medical care and therapy, but the reality is the children, even children with developmental challenges and biomedical challenges, except in the very rarest cases, change, develop, grow, and so on. And what we’re really saying to you is, you know, don’t expect your kid to do all the regular things that are the things that, that reg kids regularly do. And even that is wrong because we don’t know. Um, and your comment at the beginning of this part of our conversation was I think dead on that by assuming limitation, we then might see self-fulfilling prophecy. We may fail to recognize what people can do. And when parents come in and tell us about the things that kids can do, we just, you know, say behind our hand or parent, they’re so diluted because we’ve been so acculturated assume that the children can’t do these things that when parents report them, we tend to, to, um, to diminish that, not believe, not believe

Danijela:
I had that. My mother is in denial.

Peter:
Yeah. That is, that is appallingly arrogant on our part. It is appallingly, uh, uh, destructive to parents. Well, um, you know, when you, when you come to my clinic, the first thing I’m going to ask you is what do you want to brag about today? And if you don’t, if you won’t brag, then I don’t want to see you.

Danijela:
What I would like to see. That’s true. That’s true. But I would like to see, and I am seeing now with my, you know, the people that work with my son is, um, um, we don’t talk that much about predictions because I believe that you should not ever assume things or, you know, so, um, what I do with, uh, all service providers, I will have some goals and I, to them to see if they have some advice, how to achieve them, you know, they have some ideas how we can work around this. And, um, um, it is, um, I mean, my son, when you look at his, uh, uh, diagnosis, he, he basically can’t do nothing because he’s completely dependent on others, but that’s, that’s not true at all. He’s doing so many things. So, um, you shouldn’t be telling people, he cannot do this and do that. Well, he will develop in his way, or she will develop in, you know, in his own way. And, you know, you will learn about his abilities, what, uh, you know, the child can do and then go and focus and, you know, make that. And basically what service provides is supposed to do is to have your back. You’re not. So you feel safe with them not to judge you not to predict the things that they actually can’t predict that that’s, yeah.

Peter:
There is a, there is a belief, I think a mistaken belief. This has been well written about that. We need to help you prepare for the worst. And so we give you, you know, so you don’t get your hopes up. Uh, that’s very arrogant to start with and it’s probably wrong. Um, but that’s part of how we’ve been trained. Um, and there, the other part of this, that, that goes back to the beginning of the conversation is that we have a, um, a major emphasis on the biomedical and predicting and assuming from the biomedical. So the functional, which is also wrong or misguided, I often introduce myself when I lecture anywhere in the world, I introduce myself as a non-Asian, non-woman and people wonder what the hell I’m smoking. And, uh, you know, whether I’ve lost my marbles and I, you know, when they laugh, I say, well, it seems to be the case that I’m not Asian and I’m not a woman. What do you know about me?

Genia:
Right. Okay. Right.

Peter:
And that’s, that’s the approach that we have traditionally taken.

Genia:
Are you frustrated because it’s just really hard to know for sure what your son or daughter with a disability is trying to say, or trying to communicate what their preferences are and maybe what their decisions might be on some issues around their life? One great place to start is our free expert masterclass called AAC as a tool for self-determination and supported decision-making: how to stop guessing what people want. The masterclass is by Erin Sheldon, and you can access that by going to goodthingsinlife.org/stop underscore_guessing.

Genia:
So, Peter, you just said, I want to make sure I captured, I captured it. You just said that often people work from a biomedical to a functional, is that what you said? Those were the, so can you describe, so that to me is when you say that, that the part of the problems that we work from a biomedical to a functional in the, in the direction of biomedical to functional and that that’s misguided, that’s kind of exactly what I, that’s a much better way of saying what I’m thinking when I’m thinking, you know, we need to put therapies and interventions in their proper place, which is in service to, you know, the function of having a good life. So can you describe what it might look like from a parent’s perspective if they were approaching this in the opposite direction?

Peter:
Well, we have a number of tools. Many of them developed by Danijela that allow and encourage and empower parents to introduce their child and their family using exports. And if you go to the website, maybe you’ve been on the website already. For example, the F word is collage, which is a brilliant idea that Daniella developed and is now available for you to download for you, for your kid, your husband, your dog, whatever. Um, and you put pictures in that are illustrative of your child in the various dimensions. And I like to say that if a picture’s worth a thousand words, you can get 6,000 words on one page of this collage. If you came to clinic with your collage or some variation of it, I would know a whole lot more about you and your child than I do by seeing the diagnosis of ABC. Um, excellent diagnosis tells me nothing. I mean, if you, if you, if a child’s referred with cerebral palsy, they probably don’t also have muscular dystrophy or, you know, a stroke.

Peter:
Um, but that doesn’t really tell me anything about the child, about their function, about their family, about their environment. What we’re trying to do is to get people to take a holistic inclusionary approach. And one quick sentence about medicine, about the medical approach, the medical approaches to make a diagnosis, which means having a bunch of possibilities and ruling them out. So we think your child might have X. Nope. We found out the test came back and it doesn’t have X. So we ruled that out. I like to think about the ICF framework as rule in all know all we know, but we know two things about you. Uh, we know that you’re a parent and we, or three things we know you’re a parent, you’re a graduate student and you’re a blogger or, uh, an educator or whatever. Don’t know whether you, and I’m not asking. We don’t know whether you’re married, how many kids you have, and we don’t know anything about your kid. I want to, I want to have a picture of that child and that family because that will allow me to have a conversation, which is much more contextualized and simply talking about your child stuff.

Genia:
So, two thoughts on that one. Um, Danijela, I’m sure you, I feel confident. You will agree with me in saying that that conversation is a much more pleasant conversation to have than the one that starts with a list of what your childs can’t do or what their diagnosis is. Um,

Danijela:
So absolutely true. Yeah.

Genia:
Yeah. And I think that experience of, um, repeating our child’s diagnoses or deficits over and over and over again, I think that it also communicates something to us about who our kids are and what their potential is. Um, you know, we’re not, we’re not outside of the realm of that influence. Um, and, um, and yeah, I just, I think it just changes so much more than the conversation in that.

Andrea:
Yeah. That’s why we created the effort’s profile is because the parents that we were working with, including Danijela, said that, you know, they’re constantly having to retell their story of the things that their child can’t do, and that’s not where they want to start the conversations. And so they wanted one page that highlighted who their child was and what they enjoy doing with their family is who’s the most important people to them.

Andrea:
Um, you know, what did they do for fun? And that can be the start of the conversation. And so that’s the first page that the therapist or the physician looks at, and then you get, you get to know the person first, right? And you develop this relationship with them. I wanted to give you another example that we heard from service providers that we’re working with. And there is a young child and, um, did not want to go to therapy. He, you know, he associated with therapy with them, having him, having to do these, you know, exercises that he did not enjoy doing. He didn’t want to be taken away from his school, from his friends and go, and he was, you know, putting his foot down saying, no, I don’t want to go. And that day, you know, the mother’s like, no, you have to go, you have to go.

Andrea:
And they walked in. And that day they took it efforts approach. And the first thing that they did was they filled out, you know, what the goal sheets were and they asked the child, what do you want to do for fun? Who are your friends? And, and start with that. And then based on what his answers were and what was important to them, they’ve develop therapy strategies to help support that. And they made therapy fun for him. And at the end of the day, after that, he was happy to go back to the therapy because it was something that he enjoyed. He was in the thing, the little exercises and tasks that he was doing were explained to him that in a way that this is going to make your ability to say, go to the mall and shop with your friends easier, right? Because we’re going to be practicing these skills and it made it more enjoyable and meaningful to him. And that’s a very clear example of a difference from taking an afterwords approach versus taking a traditional approach where we’re going in, and we’re going to be doing these exercises to work on your range of motion.

Peter:
Because our traditional assumption has been that we need to make the right diagnosis and find the right treatment and fix things. So your child is going to have a lot of, let’s say, therapy, physiotherapy. Um, and you could legitimately say to me, what’s the goal of therapy, uh, or you come into clinic and you say, I want my child to have therapy. Cause they’re, their, their muscles are tight. And I would say to you, what do you hope your child will do? If their muscles aren’t so tight? And two things might come out of that one is that maybe there’s some things your child can be doing while their muscles remain tight. The second thing may be more than two. The second thing is that making that we don’t know how to make the muscles looser. Um, but even if we do that, isn’t automatically going to empower your child to do those things.

Peter:
So the assumptions that we’ve made are, and which are highly relevant, I’m suddenly going to start coughing now, and I’m going to have a terrible coughing fit and get me to the emergency room to find out whether I’ve got a pulmonary embolus or I’m having a really bad asthma attack, or I’ve got something down the bronchus, or I’ve got COVID, uh, 19, it’s really important to make the diagnosis because the treatments for those things are going to be substantially different and potentially lifesaving. But we’ve taken that acute diagnosis to treatment model and applied it to everything else. And it doesn’t work and other things to anywhere near the same extent. So we often get, I often get, uh, you know, people find out what I do is I work with kids with disabilities and their families. Well, it must, you must be very dedicated. That’s the first comment.

Peter:
In other words, why did you get a proper job? Number two is work with people that matter. It must be very rewarding. In other words, you know, there’s a good boy. And then they say, but what can you do for them? And I pity the people that say that, cause I tell them for an hour, I sit by the door so they can’t leave. I’ll give you one anecdote, which goes back a very long time, but illustrates the point. I’d forgotten about this. In the late seventies, we were interviewing a potential pediatric neurologist, a recruit to McMaster. And I said to him, I work with, uh, hundreds of kids with disabilities, um, uh, with neuro disabilities. What do you see the role of the pediatric neurologist? And like, Whoa, his answer. I’m not interested in pastoral care and of quote, needless to say my response under my breath was a famous Anglo-Saxon phrase. Uh, and that was the end of the conversation. As far as I was concerned, I’m not interested in pastoral care. So, you know, what can you do for them? Well, my answer back is what can you do for a diabetic?

Peter:
You fix the diet. Do you fix diabetics big shot? No, be so high, high headed with me, with us, with our funeral. You know, it’s not because I think what we do is more important. I think it has every bit of the same potential to be helpful to kids and families who have neuro disabilities as kids who have any other chronic health condition.

Genia:
Yeah. I mean, I think that that kind of attitude really speaks to the deep and widespread devaluation of people with disabilities in our society as well. Like the, you know, the fundamental belief that they, that people with disabilities have something important to offer the world versus the diabetic who just needs their blood sugars managed so that they can go on and do whatever they want with their life. Is there, there’s definitely a, uh, like choosing, choosing to work in childhood disability, I think is aligning yourself with a group of people who, you know, not, not everybody, you know, not everybody gets it, not everybody, not everybody sees that there’s that contribution to be made. And I think that, that in, I believe that to be a fact that people in discipline with disabilities aren’t highly valued in our society and it impacts the kind of care and the attitudes that, that they receive.

Genia:
And I think it, it kind of walks really hand in hand that fact walks hand in hand with why the ICF framework is so, or the ICF classification, the [inaudible] classification is so important, um, because it really works in one way in, in one way, there are many things that need to work, work against that, but it works in one important way against that. Um, and really focusing on the person and what the person has to offer, um, and receive from a life and community versus simply being a body, which is often how people with disabilities are treated anyway. So I like, I, I feel so strongly that this work is of critical importance beyond the, um, like it, it’s important on multiple levels, I guess, is what I’m getting at.

Danijela:
Sorry, what you’re going to get that at the end, the quality of life will improve significantly,

Peter:
but there are lots of assumptions related to what you said and what Danijela just said. There are a lot of assumptions about quality of life. If you’re in a wheelchair, it must be tough. What’s the phrase we use. How do we, do

Genia:
You mean the confined to a wheelchair? Is that what you’re, you’re getting it. Yeah, for sure. Yeah. Well, it depends on whether I can find them or not. Yeah.

Peter:
Well, when you find them, I mean, certainly when I can’t find them, I am confined because I don’t have people wheelchairs they’re liberated by their wheelchair, but what I’m getting at and being cute with the language is that what you just said, and what Danijela just said is speaks to the assumption that it’s tough, you know, it’s your confined chair and it gets worse because when we do simulations, we have our medical students or our therapy students, and they spend a day in a wheelchair and guess what, it’s crap. But if you have to spend the next five years in a wheelchair, you learn how to do it. And so, you know, our, our best efforts at trying to help people understand things like this backfire, and there’s good evidence of this. So we need to, we need to have people who use wheelchairs, come in and talk about life in a wheelchair who are blind, come in and talk about how they, you know, get around in the world, even though they don’t see it, make fun of us as the light dependence people.

Peter:
Um, you know, it’s all in how you look at things, but we have such an ableist view. We have a young colleague, uh, who is now a third-year medical student in Ottawa who had a stroke at 17. And she’s a, an, a stunning young woman with very funny, very bright, very capable, holds several Canadian perils, Paris sports, Canadian records. Um, and, uh, you know, so when we talk recently, um, at a, at a conference, I had a picture of her doing some of her throwing. And I asked how many people in the audience had won a gold medal of the, you know, in any sport. And everybody laughed. Well, you don’t have to be really good at things, but you can be really good at things even though,

Genia:
Right. Right. Danijela, did you have sort of a, a pivotal experience or a change in, in direction at some point, um, as a parent, like in your journey, did you start out, you know, they sent you home with a diagnosis of mitochondrial disease, and then what, like, how did you end up from that moment to where you are today, as far as your mindset perspective and understanding?

Danijela:
Oh yeah. I would try to make it shorter because this is a story, but somehow I felt that this concept inside of myself before I heard about that and all of it, so, you know, I was looking in my son differently, always. I was trying to find that, you know, and, and, and make him happy. And he was making me happy, you know, and we were trying to do fun things and this and that. And then, you know, we started with school even though they’re not diagnosed and everything, I just put it aside. And I said, you know what? It is, what it is. We will do our thing. You know, the doctors who do their things, I can change that. That’s how it is. Right. So, and then I started with, uh, with, uh, to do some work at the school system, um, because I felt that their inclusion is not the real one. Okay. So I felt that that’s something is wrong there. And I was trying, giving some presentation, talking about the same thing, basically just different words. And then I read the paper with F-words. And I was like, yes, that’s about it. That’s my language. Now I have a science behind my back. Right. And now when I talk about the same things that I was talking before people, yes, yes. I have a proof, like, you know, research behind and then people listen more. That’s the thing. Right. They, they hear you now

Genia:
Just the crazy mom was in denial.

Danijela:
Well, yeah, I know. Yeah. So it is a game changer. You know, now I can tell that the city is doing great in school. He, you know, the service is okay. Everything is in order. It is what it is, but we are making our quality of life change. Like they come, they’re a thousand percent.

Genia:
So what if you were a parent, if you were speaking to a parent that was very early in their journey and they, they weren’t feeling, um, they weren’t feeling like you were feeling like there was already sort of a voice inside your that said, okay. You know, it is what it is, but we’re going to, we’re going to have a good life. Yeah. So, so I’m not, I’m not trying to get into like, you know, conversations around grief for coming to terms. That’s not what I mean, but I talked to a lot of parents and they, they are listening to what they are told about all the things that their child will never do, can never do. And the experience of sort of othering that they like, they, they are, they quite reasonably believe what they are told by the authority figures in their lives. And they’re not starting from a feeling of, okay, it is what it is, but we’re going to still, you know, have a great life kind of thing. Do you have any thoughts about what you might say to a parent to help them come to that place of saying, yup. It’s it is what it is, but we’re going to have a great life. Anyway,

Peter:
Two things. One is you can say to them and you can, I don’t mind if you’re quote mate, um, that doctors are not as good at predicting as we wish we were, because we know it’s important when you ask us, you know, about your child’s future. We know it’s important, but we’re not very good at predicting. And the second thing is the children never listen.

Genia:
Love that.

Peter:
Yeah. Well, so walk into a talk or walking and talking and going to school and surviving when they weren’t supposed to survive and on and on and on. And so that’s, that’s the, that doesn’t mean to be rude to dr. Smith or dr. Jones, but, you know, we don’t feel, um, a responsibility to try to answer your questions. And it goes back to the very beginning of this conversation. We’re not very good at saying, I don’t know, let’s watch and wait. Here’s what I’m looking for. There are ways of saying, I don’t know, without giving you a B, because I do know what I don’t want to tell you. There’s lots. We don’t yet know. And as your child grows and develops and changes, we’re going to have more information. We can know what we’re looking for and see how those things happen. The problem is that physicians are not well trained in this and, um, don’t feel comfortable and say, I don’t know, uh, don’t feel comfortable to give a rounded perspective of the whole story and what you don’t want as a parent is to hear that it’ll all be fine.

Peter:
I mean, how many television programs do we see where, you know, some of these just, you know, things have exploded and there’s all sorts of chaos going on. And somebody says, it’ll be fine. Well, that’s, that’s cheesy and cheap, and I’m not saying we should say, it’ll be fine. I think we should be much more circumspect and much more thoughtful and much more focused in how we talk to you and how we talked to Daniella. And we have, we talked to the Smiths and the Joneses based upon the individuality of a situation and not on the diagnosis. And

Danijela:
Yeah. Yeah. And I would suggest when I meet the parent like that, okay. In a short, I would say at there is, I usually say, um, I can promise you it will get better. Um, but, uh, because you know, people are in that phase where it’s really tough. I’ve been there and I know how it is, but there is two advices. I would ask them to go and feel the collage okay. For their child. And for themselves, it was, it was worse for me to find the, you know, figure out what I like and what they want to put then for my child. So you try, but when you do it, it’s at the process of that is going to shift your mind around that. Okay. And the second advice for the parents, when you go to the service providers, any service, just say the sentence, the mom or the parent knows the best, just remind people know that. You need to remind them about that because I, I know the best about my job. I know that file. Right. And I know everything else. So I have a whole picture in my head. And so I am a con competent to, to talk about my job,

Peter:
Send it two or three. If I remember after this conversation, I’ll send you two or three testimonials from parents that are quotes from parents about how these ideas have been, have been revolutionary.

Genia:
Great. That’d be awesome. Okay. So anything else that you think it’s, um, you think is important that we communicate to parents?

Peter:
Yes. Uh, Andrea and I are part of a, uh, a really fascinating Canada Australia study that is introducing called in visage. And it’s a study that is introducing parents to a set of ideas of which the F words are part, um, about how we think parents of children with impairments may, um, face the world more effectively the program, uh, and a sort of search program. So the intervention, which is done online involves five weekly hour alone interactive discussions, like the one we’re having now with parents, hopefully having had a chance to look at some of the material ahead of time. And the themes, the first theme in week one is about modern thinking about health and introduces the ICF framework and the F words. The second, um, uh, session is on, uh, development, child, family, and sibling development. The third session is on parenting as a dance led by the children. The fourth session is on looking after yourself. Um, and the fifth session is on communicating, collaborating, and connecting. And what we’re evaluating is a variety of parent-reported outcomes before, right after, and then three, six and 12 months later, plus some qualitative interviews, and we’ve done this, we’ve run two sets of sessions in Canada. And the second of the sessions is running in Australia right now. And, uh, we’re interested in whether and how this impacts on parent wellbeing, parent mental health and so on.

Andrea:
And this is for parents with children under the age of six. Right now we’ve been told though that this program would be relevant to families with children of any age. And so that will probably be a next step, but right now we’re really focusing on those early years.

Genia:
Yeah. I really think that’s so important. It’s certainly I’m focusing on families with young kids as well, because I, you know, I, I have spoke with spoken with just dozens and dozens of families who have kids that are aging out of high school in particular, seems to be a time. And they’re, you know, they’re aging at a pediatrics, they’re aging out of school. And there are saying things like, why hasn’t somebody talked to me about this beforehand? Like things would be so much better. Now if I had had a chance to think about these things when my child was really young. Um, so I, I’m excited that this is, um, that you’re starting with kids under the age of six. When do you expect the study to be complete?

Andrea:
We have two more cohorts, uh, coming up in April and there’ll be potential for some other cohorts after that. Um, we’re still recruiting, um, but spots are filling up quickly. Uh, I just put in the chat box, the link to our online, to our website that has more information on the course. Um, but yeah, this will hopefully be an ongoing program and we’ll be looking at other ways to deliver it. Um, and looking at we’re looking at developing a similar program for service providers.

Genia:
Awesome. So I will create a link to your link at goodthingsinlife.org/study, so that if parents are interested and they need an easy link to, they can go to goodthingsinlife.org/study, if they are interested in learning more or participating, thank you very, very much everybody. I really, really appreciate your time. I really grateful for the work that you’re doing in the world. And I’m super excited to see the results of your study. Thank you.

Andrea:
Thanks for inviting us.

Genia:
Thank you so so much for joining me today, you know, for many of our kids, we struggle with figuring out how to support them to have access to rich language so that they can have some autonomy in their life so that they can tell us what they’re thinking and what they’re feeling and what their experiences are, so that they can communicate, so that they can make decisions, so that they can influence their lives. If this is a struggle for your child, check out our free masterclass by Erin Sheldon, stop guessing what people want. It’s a masterclass on using AAC, and it is really awesome. You can find it by going to goodthingsinlife.org/stop_guessing, it’s free. And it’s really fantastic. Thank you so much. And I’ll see you next week.