Dionne Bensonsmith and Tammy Nyden - Mothers on the Frontline (EP.11)


Hello and welcome back to Causepods! We are back after a short break and slight change in name but are delighted to bring you this episode today with two great guests! They are Dionne Bensonsmith and Tammy Nyden from Mothers on the Frontline. The third cofounder of the organization and podcast, Angela Riccio, is unfortunately not with us today but we are really excited to talk to our two guests nonetheless. The purpose of Mothers on the Frontline is to highlight and share the stories of mothers raising children with special needs. The show was born out of the desire of the founders to support each other, growing organically outwards into the podcast that it is today. They aim to create a space in which conversations can heal, comfort, and educate through care and information and they have found the medium of podcasting to be effective in this pursuit.

In our conversation we cover the beginnings of the podcast, its formation, and the needs that inspired it. We also get into how being avid podcast listeners informed these choices before looking at how the format lends itself to emotional and caring subject matter. Tammy and Dionne are so open and sharing with their experiences and give us great insight into how hosting the show has helped them in their own journeys. We chat about some of the technical lessons they have learned and our guests are kind enough to offer up some advice to hopeful podcasters with similar ambitions. For a beautiful meditation on community and care, tune in!

Key Topics:

  • The idea behind Mothers on the Frontline and how it came about. (02:21)

  • Tammy’s experience and how this influenced the creation of the organization. (04:48)

  • The importance of podcasting to Mothers on the Frontline. (06:28)

  • Emotion and care as conveyed by the voice and through a podcast. (10:59)

  • Inviting guests and experts and responses to outreach. (14:19)

  • Solving one’s own problems through altruists endeavors. (18:17)

  • The initiatives and work that Mothers on the Frontline are occupied with currently. (21:08)

  • Some of the most important lessons that our guests have learned about the medium. (22:59)

  • The value in starting and getting your message out there. (29:35)

  • Looking at care and narratives over data collection. (30:36)

  • Balancing the qualitative and quantitive side of things. (34:59)

  • Comparing the care given to special needs children and those with chronic illness. (36:41)

  • And much more!

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[0:00:02.6] MP: Hi, Matthew here. Before we get started, I want to apologize. We did have to take a short break here from producing episodes of the podcast and as you might have noticed, we’ve also had to change our name. We are now Causepods, everything you want to know, you can find at causepods.org. Same great show, same great content, same great mission, just a slightly different name.

Thank you to everybody who has been supporting this effort since the beginning and bear with us as we are definitely going to be ramping up production to 2019. Since we are in the giving season, why don’t you think about heading over to causepods.org and checking out some of the great charity work that’s being done by our hosts. They could certainly use your support. Thanks again for checking out Causepods.


[0:00:42.6] MP: Hi and welcome to Causepods. I’m your host, Mathew Passy. Here at Causepods, we have one simple mission: to highlight the amazing folks who are using podcast as a way to raise awareness for good causes. Whether it’s a non-profit they work with, a charity they support, a social justice campaign they are championing, a medical condition they are battling or someone who is just looking to make a positive impact on their local community, state, country or the world.

These are podcasters with a positive mission. Along with raising awareness for our guest’s favorite cause, we’re also going to see if we can raise some money to support their efforts. So make sure you check out the show notes for each episode at causepods.org to learn more about what they’re doing and how to help them achieve their goals.


[0:01:27.0] MP: Today on Causecausts, we are joined by two fantastic women who have started an incredible podcast and organization that has a focus on children’s mental health advocacy and the healing and support for their caregivers. The organization is called Mothers on the Frontline is the name of their podcast and we are delighted to be joined here by two of the cofounders Dionne Benson-Smith and Tammy Nyden.

Tammy and Dionne, thank you so much for joining me here on Causecasts today.

[0:01:56.6] DB: Thank you for having us.

[0:01:58.3] MP: Thank you, we should also mention that there is a third cofounder Angela Riccio who could not be here today but we just want to make sure we let everyone know that there’s three incredible women who are running this organization.

Dionne, I want to start with you, tell me a little bit about how this idea came about and why this was so important for you in being a part of Mothers on the Frontline?

[0:02:21.8] DB: Well, you know, I always like to say that this idea came about organically. Tammy and I are lucky enough to – Tammy, Angela and I are all lucky enough to be friends and Tammy and I both have children who have mental illness or mental health challenges. In the process of just sharing information as mothers.

Now we say this the Tammy in particular for me was very valuable in helping me as a mother, navigate my son’s mental health challenges. What we found out was we were sharing a lot of information between each other, not only about what kinds of doctors we should use, what kind of medications worked, what the diagnosis means but really, we were starting to hear a lot of information about a strategy.

What you should do when you go and talk to a doctor. She actually gave me a recommendation when I still lived in Iowa, to a particular doctor and she said, well when you go see him, make sure that he’ll ask you this and so you want to be prepared to answer these questions.

Over time, what we realized is, what we were doing was really talking about how we interact with doctors, how we interact with teachers and as mothers really giving each other a roadmap on not just the intricacies of like I said, medications but the intricacies of communicating and how to tell our stories and how to not only represent our families, represent our kids and advocate for our kids but really, how to navigate this experience in a way that it’s not so taxing, it is taxing so I should not say not so taxing but it does – it honors who you are as a mother and as a caregiver.

We really wanted to have a way to bring this kind of conversation as well as conversations over policy and advocacy and open up this conversation for other mothers and caregivers who are having similar experiences.

[0:04:32.2] MP: Tammy, I mean, obviously your origin story there will be very simple and easy to evolve but you also have a little bit of a background in this world too. How did that experience sort of lend to the formation of Mothers on the Frontline?

[0:04:48.5] TN: Yeah, I had been doing some children’s mental health advocacy for the past five years and one of the things that was a big motivation for the podcast was as advocates you really need to get stories out there but there are lots of reasons, it’s hard to get these kind of stories out there. First of all, there’s mental stigma with all mental health. Unfortunately, we live in a society that still treats it as a character flaw as opposed to a health issue.

It’s hard to get people to talk about mental health in general but when it involved children, there are privacy issues. That is also a concern. It’s really hard to get families to share these stories and we want podcasting – gave us a way to do it that we could allow people to maintain their privacy when they told their stories, maintain their child’s privacy and be able to do it in a way they could still be authentic and real.

That to us was a great way to do it. I agree with Dionne. Part of it was just realizing conversations between two moms going through this are very valuable for other moms to hear but also, from an advocacy point of view, how do you get these stories out there. It’s not just – I joked with one of the reporters that he kept asking to talk to me. I’m like, well, there’s not just a same five families in Iowa dealing with this but you’re the only side that would talk. That really sort of – something that influence this to me as well.

[0:06:11.1] MP: I mean, you could have very easily started a support group, you could have very easily had a Facebook group and just left it at that or you know, just a place with online personas and still remained anonymous but what was it about the podcast specifically? Why did that become a part of the piece?

[0:06:28.9] DB: One of the reasons and we did talk about this. Ironically, we have a Facebook page and we have a Twitter account and some other things but really getting it to central element of telling one’s story and having access to different stories, right? And stories that women are telling and really communicating experience.

Facebook pages are good but it requires you to write, it requires you to – you’re in a singular space and one of the things that I think is unique about the podcast is really the podcast is the format in which we upload the interviews, right? The interview space is really a space where – we talk a lot about this where we are talking as mothers with other caregivers or advocates within the children’s mental health community.

We’re really trying to – in that interviewing space, really provide a space of compassion, a space of empathy and a space that opens up the ability for interview participants to tell their story exactly how they want it to be heard. The podcast format allows us to interview and collect interviews, being in the interviewing space with different women, advocates, parents and then sort of upload and share that in a way that maybe because I’m not as technologically advanced yet.

I couldn’t and we couldn’t figure out how to do this with Facebook. That’s not to say that we won’t in the future but this is why we arrived at the podcast as a way of sharing what was going on in the actual interview.

[0:08:19.8] TN: There’s also an intimacy with it, when you’re listening to it, you can listen to it in the privacy of it’s just you and the people you’re listening to and I think that that helps because some of the people we’re hearing from that are listening, just listening as an act, an important act for them because they haven’t talked about this with anybody.

To have that private space where they can listen and know they’re not alone. I think that’s important too that other formats don’t provide that same sort of feeling of intimacy I think. This podcast too. I think that’s important too.

[0:08:53.1] DB: The add with that, I mean, in terms of what you're talking about with intimacy is there is something really personal about listening to voices and the ability to listen to – I’m a huge podcast – I listen to podcast for lots of different reasons and lots of different types of podcasts but I know when I put on my headset and I’m listening to someone talk, it is like I’m with them and exactly what Tammy is saying, There is a level of intimacy and a level of participation in this sort of process and experience that we thought podcasting leant better to what we’re trying to do. Particularly when we’re talking about healing.

[0:09:38.0] MP: It is always so amazing to me how much emotion can come through just hearing someone’s voice, the pace at which they’re speaking, the tone of their voice, even the pauses when they’re speaking can have such an impact on the people listening and what they’re saying versus as you indicated before, if it was just printed online.

[0:10:02.6] DB: Yeah.

[0:10:05.1] MP: I imagine too with this particular topic and you know, it is about Mothers on the Frontline but you know, I’m sure there is some fathers who are listening to this as well. I imagine as you said, you know, when as a mother, as a parent, any time your child is struggling with something is dealing with something is suffering with something like, not only are you struggling and dealing and fighting with it yourself as a parent but you know, there’s a propensity to – I guess, want to take blame for it or you know, want to understand what you did wrong or like how you cause this, how you didn’t prevent this.

I guess that intimacy, that sort of caregiving network that you know, arm around each other feeling that you get from a podcast is really important. Do you find that to be the case Tammy?

[0:10:59.8] TN: I do and I think part of – that’s part of what’s so important about how we try to setup the interviews as well. They’re always done between two people. Occasionally we’ve interviewed two people at a time that were you know, mother and daughter. There’s no technicians there, it’s just us.

We’re operating the microphone ourselves so that there’s no outsider listening in, we do this in the community, find us a space where there’s privacy and we can speak and we spend a lot of time before the interview starts. Just making sure everyone’s comfortable and talking about what we’re doing. What I think Dionne and I talk about this a lot.

Why I think it’s working is because when the microphone goes off, people keep speaking and we leave with hugs and tears and people say it’s transformative and I know it’s transformative to me when I had the honor to interview somebody and so I think it’s not just the podcast but the interviewing process as well that leads to the podcast is healing because whenever you have two people who really are listening to each other and are present with each other. Something really important happens.

[0:12:13.4] DB: Yeah, there’s a space and there’s so much Matthew that happens when you are a parent of a child with any kind of chronic illness but particularly, an illness that is so stigmatized and it’s isolating and that was part of even in the beginning of the process where I said I was lucky to have Tammy because if I did not have Tammy as a friend, let alone the colleague.

I would have been utterly alone. I would not have known any other mother that I could go to and say, this is happening and this is what’s going on, this is why I’m absent from things and this is why you know, our lives have been up ended and that talking space and that relational space becomes a space of healing to actually hear, like you said, there’s so much intimacy in someone’s voice and hearing someone laugh and listening to someone work through a lot of the same emotions or even if it’s not emotions that you’ve had but knowing that there are people who are working through and trying to learn in the same way that you are, it really does close a gap and I agree with Tammy.

I think the interview space, I mean, it’s an incredibly healing space for both me every time I interview. It’s like pieces I recognize pieces of myself but other pieces of myself are also healed. Yeah.

[0:13:42.1] MP: Have you found that - I mean I’m sure again with your connections Tammy and just with what you're dealing with. I’m sure it’s easy enough to find people but have you found that because of this podcast that you are able to reach out to different experts and different practitioners with a little bit more ease like do you find that they are more receptive to your questions or to supporting you or to anything like that because you now have this platform to communicate with an audience like this?

[0:14:19.1] TN: I’m not sure. I think that receptivity went up when I became more of a public advocate and they sort of saw me that way which proceeded the podcast so I’m not sure that change with the podcast itself. I do think that we feel, and have come to see that. The way we view ourselves at Mothers in the Frontline is as a wisdom collective, right?

We’re really gathering this wisdom and sharing it with each other. We’ve come to realize that those experts can be helpful and they’re important but there’s so much expertise and wisdom we’re getting from each other that some of us are fortunate enough to maybe have a support group or women’s monthly dinner with other special needs moms or something like that to get that but so many people don’t have it.

That’s what the podcast is trying to provide. I guess my answer is not really that wasn’t my experience with providers but I do feel it’s helped us reach out to other caregivers and advocates that I’ve met so many amazing people through this work that I never would have met otherwise in that regard.

[0:15:25.9] DB: In addition to the podcast, what we’ve done, what we have or worked on and talking about telling your story and how to communicate and tell your story to family members, doctors, social workers in a way that leaves you feeling whole and for me, as a parent, I can’t say that it’s changed the behavior.

My participation in this has changed the behavior of any of the doctors or experts that I deal with but it has changed the way in which I receive and I interact with them. My participation in this and talking to other parents and listening to the podcast and doing the interview to the workshop has certainly helped me feel a lot less stigmatized and a lot less bland. Just naming parent blame me and mom blame me and talking about what that means is it was a significantly healing process for me personally.

[0:16:28.2] TN: Yeah, absolutely. I would just add to that and that’s been I think, so important because one of the things we do in the workshop as we talk about how do you tell your stories to your child’s providers and so forth in order to get them better care. But it also comes down to helping us feel more whole and that’s where Dionne’s friendship has been critical to me and Angela’s friendship as well because what we find ourselves blaming ourselves, we step in and say, no.

You’re a great mom, you’re doing everything you can and being supportive and helping us through that because there’s so many pressures from other blame in culture. I agree with Dionne. I interact differently with the providers because of this experience. I’m not sure they’re interacting differently with us but it’s changed how we feel and I think that’s really important because I’m a better advocate for my kid now.

[0:17:21.4] MP: I mean, not that I think that you did this for this reason but it’s amazing to me that some of the best projects and this can be nonprofit work, this can be a business that somebody launches, this could be a podcast. You know, so much of it can come from a selfish ambition like, you know, it wasn’t like, I know that your motivation for this was good and altruistic and was helpful but like, it was so helpful for you two and to see that in just trying to solve for your own concerns that you can create something that could be so beneficial to so many other people.

I think people are sometimes afraid to want to solve their own problems and not realize that in doing so, that they’re going to find a whole community of people that share in those experiences and can benefit from you sort of working your way through the issues.

[0:18:17.4] DB: Yeah, I think that that’s true and too reach back and why the podcast is so important is because we ask ourselves this, we go back, we’re doing workshops, what does the podcast provide is the hope I can say and it seems like this is the feedback that in providing the space and the listening space for people who can’t – because this is not to say, having a podcast takes the place of support groups and other things that exist.

But one of the things that Tammy and I both realized is that as mothers of children with comprehensive health needs. It’s not always possible to get to a support group. It’s not always possible to provide the experience or get to the experience to go to that experience and you know, for me, just to be blunt as an African American woman, it’s also difficult sometimes and in certain spaces and so, to have the ability to – it is slightly selfish and altruistic to say that yes, this is an experience that we have and we want to share it and hopefully, it allows for people to interact in the way or in the place that they’re at the moment. I don’t know if that makes sense.

[0:19:36.1] MP: No, I think it does and I’m sure that with any time anybody is dealing with something in the medical side of life. There’s a lot of driving and a lot of waiting rooms and potentially a lot of maybe waiting outside appointments, you know? As a parent with this. I’m sure many times you’re in the room but many times you might not be and so I’m sure having something that people can easily pop in here and listen while they’re just sitting around waiting.

Makes this, as you said, an invaluable resource when you can’t get to that support group or you know, you can’t get out of the house to go meet up with people.

[0:20:14.4] TM: Right, we all often joked around also about what can we do that a parent can engage with while they have to be engaging with helping their child. You can put on your earbuds and your kid’s not hearing it, they’re not seeing something. It sounds funny but sometimes you know, you can’t step away even for a minute. To be able to you know, put down your earbuds for a few minutes, as your child’s falling asleep. It’s a big deal to have that kind of access to not feeling like you're completely alone.

[0:20:45.9] MP: I’m sure.

[0:20:46.4] TN: I do think that’s an advantage to podcast, yeah.

[0:20:48.9] MP: Yeah, I’m sure every minute of it. You know, at the time that this is coming out, it’s going to be November and so I know you have May’s Children’s Mental Health month but November’s also Caregiver Month and you do have an information campaign. So do you want to tell us a little bit about what is going on in November and what sort of awareness you are hoping to raise during the month?

[0:21:08.8] TN: Well, we’ll just be having some information on our website and on Facebook throughout the month. We are currently actually engaged in a project before November, we are currently working on the end of October. So before this will come out where we’ve always wanted to take this is that we’re not always doing the interviewing and we’re excited that we’ll be training other people to do interviews. So that everyone can interview in their own community.

The rule of our podcast is the person doing the interviewing has the same salient lived experiences as the person that they are interviewing and so that allows us to open up and get a lot more experiences than ones that are similar to mine and Dionne’s being recorded. So we are excited to have our first training where I guess the whole point behind our podcast is we’re really trying to hand the mike to other people to hear their story as well and that is a little different.

So we are not really hosts if that makes sense. We’re other – some of our podcasts will be another interviewer and another mother doing their thing.

[0:22:11.2] MP: So you really are just taking credits as the facilitators.

[0:22:14.8] DB: Yeah, facilitators.

[0:22:15.9] TN: That is pretty much what we’re doing, yeah.

[0:22:18.0] MP: So now it’s an incredible story and you both have an incredible background and I think what you’re doing is admirable and it sound like it’s wildly success and that it is very helpful to many mothers and again and again many parents out there alike. I am just curious though as someone who produces a Causecasts, so somebody who actually uses this particular medium to get your message out there, what were some of the biggest lessons that you learned and what were some things that somebody else hearing this you would want them to –

I guess you know the pitfalls or the lessons that you learned that they can take away so that they can be successful, you know, right from the get go.

[0:22:59.6] DB: Oh there’s a lot. We’re still learning.

[0:23:03.8] MP: We have time, we have nowhere to go, so I’ll take them all.

[0:23:07.9] TN: Yeah, I want to reiterate something Dionne just said is we’re still learning and we’re fairly new. We started in 2017. One of the things I think is really important for us and this might be going against the grain but in the story work we’re doing, we really stress that this model of every story has a beginning, middle and end, well no, it doesn’t. Many of the people we are talking to are in the middle of it. They don’t where it’s going and we want to honor that.

And so, we try to allow people to tell their story and not shape it into an ark which seems are natural to most of the media we’re used to I think and I think that is why it’s refreshing for me that we are doing the podcast in this way. I have been interviewed by many for newspaper and TV and things like that in terms of advocacy and they often want to turn my family’s story into a triumph story because that is what people want to read.

But every time I am interviewed I am not in a moment of triumph and sometimes that feels really false and so I think that’s one of these. We talk about a lot is allowing stories to unfold organically as they unfold and so I would say honor the story and where it is when you find it, if that makes sense?

[0:24:26.9] MP: Don’t try to force it into a narrative that might not exist. No, that makes a lot of sense. What about you Dionne?

[0:24:35.4] DB: Well I was thinking it’s funny because now we’re going to reverse, right? I said you were the tech guru and maybe because Tammy has spent so much time in the technology and I am just going to take this opportunity to give her a compliment has become wonderfully proficient with all of these different applications and from WordPress to Blueberry and I don’t even know if I pronounced it correctly and the editing software that I don’t think she realizes.

Or she is not giving herself enough credit in terms of the learning curve because just to be personal you have a philosopher and a woman studies professor. We are not trained to do this. She’s trained in a totally different way, I am trained with data as a political scientists and women’s studies and we both jumped in and I think of this way it was probably and you could piggyback if you want Tammy, it is probably a good thing that we didn’t know ahead of time.

[0:25:40.2] TN: Probably.

[0:25:40.9] DB: Exactly.

[0:25:41.3] TN: We would have said it was too hard.

[0:25:43.3] DB: Exactly, yeah I would have. I would have, if somebody had told me all of the steps of uploading and editing and I am still not proficient at editing software. Editing is a really big deal and for instance, we have music and we have wonderful music in the podcast and I just attended a conference where another group who also they’re doing podcast on parenting and we started emailing and they were like:

“Well we want to ask you this question, how did you get the music for your podcast? How did you all put the music in?” and so it sounds like a small thing but it was something that we thought off in the beginning and we walked through you know copyright, what kind of music, what kind of mute and I am going to toss it to you Tammy because you actually worked this out in terms of just music.

[0:26:42.3] TN: Well in this case we’re very lucky because we worked with students who created the music for us and they want to be known as Slay Emoji is what the term that they used but they created this music for us which was such a gift and so we were very lucky with that that they did it and they created it for this. So they made it particularly for intros and outros so thank you Arhan so.

[0:27:06.1] DB: Yeah but I mean I bring it up because it seems like a very simple part. It is something that is part of our podcast and we take it for granted, the podcast that have music and it wasn’t until I was asked this question that I really thought about, oh there is all these steps that we had to go through technically even from what kind of equipment we’re going to use and using the equipment properly which I still get armpit sweats when I have to record.

I am still getting used to the wavelength parts and what they mean and I remember when Tammy walked through with me on the editing software just how to dampen out background noise and I am still not proficient and I definitely don’t feel very confident when I am doing it and I think I have yet to actually produce and edit it. So Tammy have been doing most of the editing all of the editing because I am just speaking for myself.

I am still trying to feel confident in that way. If you ask me to do an interview, if you ask me to run a workshop even if you ask me to write something I’m like, “Yes I am very confident in it” but editing and wavelength parts and editing out background noise, it is a learning curve and I would say to anybody he was doing this to be gentle with yourselves and understand that this is unless you are professionally trained in doing this, it is a learning curve.

And it’s not going to sound, like Tammy said, it’s not going to sound like this American life or the podcast that you might be used to listening to but it doesn’t mean it’s less worthwhile.

[0:28:51.8] MP: Yeah, I think that is fantastic advice for everyone. I mean as someone who produces podcast professionally, you know, having highest quality sound is important to my clients but you know I have always said, good content will go a lot further than good quality. You know there are certain minimums of quality that you need to meet in order for people not to leave a podcast but no one is subscribing to a podcast because they’re like, “Wow those are some really good sounding mics.”

If the content is irrelevant or if the topic isn’t relevant or the value being provided isn’t there. You know you can have the best studio in the world but no one is going to care but you know I think that’s great advice.

[0:29:35.0] TN: Yeah and I think just to piggyback on that, you need to just start. Don’t let the perfect be the enemy of the good. It is not going to be just the way you wish it would be but that is how you keep getting better and you learn and we are still trying to figure out so many things and we really just feel like, I feel like I’m at the beginning and learning all of this and Dionne’s being modest. There is so many aspects of this that the interview questions.

I mean everything like there’s no way we could have done this without her amazing insight but that would be my advice is get started. Don’t hold off until you feel ready because you will never feel ready. There are too many different pieces to master I think.

[0:30:17.6] MP: Yeah, 100% it is the same advice I would give a lot of people. Dionne, I have another quick question for you since you brought it up. I am going to see if there is anything taken away with as a data scientist, anything in the numbers for podcasting or anything like that that is sort of piqued your interest that you would want to share with us?

[0:30:36.9] DB: I don’t know in terms of the numbers in terms of podcasting but I know that in the way in which we conceived this project from the very beginning and why we decided to focus on narratives instead of collecting data for instance was that we realized that as a data scientist your data is only good or your data is only as good as the information that you have access to and so we realized very quickly that women and mothers and caregivers and caregiver stories.

And then particularly any types of stories around children’s mental health there is not a lot of narrative out there. There is a particular narrative and Tammy can pick this up too around mental health and mental health crisis and it was really geared towards adults and because that narrative is geared in that way and the data that has been collected is largely collected on adults. If you look at I am also a policy person. So if you look at the policy outcomes and where most of the resources.

And most of our policies are directed is towards adults with mental health issues and what was left out was children and because children are in a very precarious position of telling their story so to speak one of the reasons why we decided to focus on caregivers and caregiver stories was not just to put the emphasis back on or centering the caregiver in this but really honestly, particularly with a child the caregiver is the center and the caregiver is the one that has access to all of the different intersections of the experience of a child.

Or the experiences of parenting and caregiving for a child with mental health diagnosis. So as a data person it was really important. I don’t know if I am answering the question about data with podcasts but I know it was very important for us to get the narratives out there so the narratives could start to inform the data collection later on with regard to children’s mental health.

[0:32:58.6] MP: I mean the truth is that doesn’t answer my question at all but I think what you said is actually it brought about a more pressing, a more important like a more interesting issue that I think I had never thought about it that way that right in the beginning so like mental health is still largely stigmatized like we are finally starting to see society come around being more open, being more accepting. We still have a lot of hurdles to get over but we are more encouraging.

More accepting of having open discussions about mental health but we are still in such the infancy of that discussion that we haven’t even gotten to the idea of what it means as the parent and the caregiver to deal with that. So right, my question, who cares anymore? I think that was a fantastic bottom. I am glad you brought that up and Tammy I am sorry to have cut you off, please continue.

[0:33:53.4] TN: No, I just want to follow up on that because this is what Dionne and I talked about a lot because she is a policy person and I do the history and philosophy of science and so I talk about method and one of the dreams that we sort of have with this is once this narratives are gathered as you gather a lot of these, you can see what stories are naturally arising. So I sort of see this as an inductive process where people get to tell the story they need to tell at that moment.

They tell us what’s important, we are not doing research questions. We are not going in with the hypothesis and trying to answer a question about it based on what they say. We let them say what they want to say and we think that that inductive method will come up with issues that then both qualitative and quantitative researchers can then start asking questions about that they never would have because when you start research, you’re always starting with the research question.

That your hypothesis and that’s always informed with a pre-existing narrative and so this gives us this chance to challenge it.

[0:34:59.2] DB: Yeah and challenge it and also there just really is not as a person who is interested in both qualitative and quantitative work, they’re quite literarally is not enough data out there on what it’s like to parent a child but even what’s like to be in the middle of a very complex health crisis like mental illness and the effects that it has. I mean if we move it to other chronic illness and even if you click one on the website for childhood MS. There’s lots there about the economic crisis that it can cause and where to get support.

There is lots of numbers with regard to health trajectories not just with the children but with family members and how you can be effective support and what you need to do and what we realized is this is not necessarily the case for children’s mental health and it is not because of the fact that people are not in the moment of crisis and there are families out there.

It’s just that there aren’t any stories. There is not enough of a narrative, enough of the stories for even a researcher like myself if I were going to go in and decide to design something that would survey parents of children who have mental health challenges. I wouldn’t know where to even begin to ask questions and so yeah, you know I didn’t answer the podcast thing. I am sorry but this is why the podcast number – this is why the podcast record.

[0:36:41.8] TN: I would add to that Dionne because that comes back to the caregiving month, one of the struggles we’re having we did an information campaign for children’s mental health month in May and we were anticipating doing the same thing in November but there is no data and we are not finding data so we can’t do the same thing we did in May. So that is really frustrating but it is also an important thing to notice. What there is data on and it is still an emerging field but at least there is something on the cost of caregiving emotionally, financially and so forth for adults caregiving other adults.

But when a parent is caregiving a child with special needs whether they’re physical, mental, developmental, intellectual and otherwise, people just tuck that under parenting and it’s not. It’s a whole other gamut. It is not the same as parenting when you have a child with a chronic illness or with a complex health condition. It is a whole other job in addition to parenting and that is not recognized in our society and it certainly not recognized in the research.

And what kind of health implications that caregiving has to the caregivers themselves and what’s that doing to families and so on. Yeah go ahead.

[0:37:55.1] DB: Well I’ll just draw a line on what Tammy is saying to the policy implications of that. The policy implications of all the complex nature of caregiving that happens for parents of children with chronic illnesses under parenting means that in areas where we start to explore caregiving and they ask about the caregiving adult caregiving, what it means is that their services provided for the caregivers and there is certainly respite care for parents.

But the respite care for parents is not as extensively explored as the respite care in and I shouldn’t say extensively explore but it is limited respite care but when you are a caregiver as an adult caregiver there are tax breaks, there is all these different things that are folded in because the caregiving expectation isn’t there for adult to adult even husband to wife or spouse to spouse and when you fold it under parenting then all of the economic costs, the social cost.

What we’re talking about in social isolation, the physical costs and spiritual cost all of a sudden get collapsed and it becomes totally invisible and that’s a part. That is probably at the heart of why we decide to focus and really try to center not just the children but focus on the caregivers.

[0:39:26.7] MP: Well I think that what Mothers on the Frontline is doing both Dionne and Tammy who are here and Angela who couldn’t join us, I think it’s just a wonderful ambitious and such an important concept. I love the way that you talk about it. I love the way that you structure everything. I love the support and the narrative that you are trying to get out there even without trying to force it onto anybody or try to artificially develop something that doesn’t exist.

Just being a resource that doesn’t exist right and I think it is so important. I think it is such a great cause and as part of your efforts and as part of what we do here on Causepods, we will be sure to create a Go Fund Me page with all proceeds benefiting Mothers on the Frontline. It is a certified 501C3. If you want more information about that, you can get that on the show notes. You can go directly mothersonthefrontline.com.

From there you could learn more about the non-profit. Check out the podcast, check out some of the other incredible resources that are there. Learn more about Tammy, Dionne, Angela, the whole team. They’ve got a lot of great information and resources there and I really just want to thank both of you for taking some time and telling me the story and opening my eyes up to something that I hadn’t thought about but you know once you say it, it does sound so obvious.

Some of the hurdles out there that people aren’t even thinking about jumping over. I am glad there are people like you in the world that are doing it.

So Dionne and Tammy, thank you so much for joining me here on Causepods today.

[0:41:03.2] TN: Thank you Mathew and thank you for what you’re doing. Thank you so much.


[0:41:06.8] MP: Thanks for listening to this episode of Causepods. Again, if you’ve been inspired by the work of our guest, please check out the show notes in your podcast app or causepods.org. There you will find links to their work and a special donation link set up to support their favorite efforts.

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Thanks again and see you next time on Causepods.