[Descriptive transcript: Video opens with a title cover slide with text and images. Text: “2022 Collaborative Experience Conference November 3,4, & 5. For parents and professionals serving students who are deaf, deafblind, and hard of hearing. The MN gov logo is on bottom left An image with a magnifying glass resting on the chalkboard tray next to a pile of colored pencils. Text on bottom right: “Supporting the whole child reboot”. Slide is replaced by a presenter view showing two folks, Danelle Gouramis on the left, andDr. Amy Szarkowski on the right. Text underneath each person: “Danelle Gournaris, Collaborative Plan Program Director, MN Commission” and “Dr. Amy Szarkowski, Psychologist”. Danelle signs while the interpreter on the bottom right corner voices.
>> DANELLE GOURNARIS: Now we are at the very end
[Danelle freezes for a bit. Text slides off.]
>> DANELLE: … of our Collaborative Experience Conference . I am delighted to introduce Dr. Amy Szarkowski, a core team member for Fostering Joy. Fostering Joy families is supported by Hand and Voices and Fostering Joy professionals is sponsored by the institute at CCCBSD that's the Children's Center for Communication and Beverly School for the Deaf.
[Danelle’s video becomes choppy at times.]
>> DANELLE: They jointly strive to shift the conversation from remediation of challenges in communication and raising Deaf and Hard of Hearing to celebrating the joys in the journey. Dr. Szarwowski is a director at the Clinic and Children's Center Institute and on the faculty at the Lens Institute Program, please give a warm welcome to Dr. Amy Szarkowski. The floor is yours.
[Danelle’s video window is replaced by a presentation view showing slides. Title slide has a pair of red hearts overlapping on the right side with an icon of a parent holding an infant with a heart on its chest. “Fostering Joy”. Text on left side: “Collaborative Experiences: Families, Adults who are Deaf/Hard of Hearing, and Professionals Coming Together to Foster Joy. MN Collaborative Experiences Conference, Nov 5, 2022.”. Amy voices while the interpreter signs.]
>> DR. AMY SZARKOWSKI: Thank you so much, Danelle e I am excited to speak here today with you about Fostering Joy, I think it fits well with the Collaborative Experience. I hope you will all sit back and take this in and enjoy a little bit of what you hear and perhaps get a little motivated to want to do something about it. Here we go.
[New slide:”Amy Szarkowski, PhD - Fostering Joy Care Team”. Text on left side, with a snapshot of Amy with two children on the right side. Text: Mom; Joy Ambassador • Psychologist; Director, The Institute & The Clinic at the Children’s Center for Communication/Beverly School for the Deaf (CCCBSD); END (Leadership Education in Neurodevelopmental and related Disabilities) Faculty, Boston Children’s Hospital; Part-time Faculty, Dept. of Psychiatry, HarvardMedical School.]
>> DR. AMY SZAROWSKI: As Danelle mentioned I have a few hats I wear, important to me is I am a mom, those are my kids and I am a Joy ambassador, a psychologist by training in part of the work I do and am very much interested in working with children who are Deaf and Hard of Hearing and their families and especially children who are Deaf with disabilities. That's the area where I thrive and I find myself being very motivated and joyful to work in the work that I do. I'm going to share that with you going forward as well.
[New slide: White text inside a read block with white background. Text: “The Collaboration Part”.]
>> DR. AMY SZAROWSKI: We've broken this presentation into six parts, so literally this is the collaboration part. I'm going to start by telling you the collaboration, how it came to go and then talk about Fostering Joy and how we can implement that in our lives.
[New slide: A group collage photo showing several individuals. Text underneath: “Fostering Joy - a Collaboration from the Start”.]
>> DR. AMY SZAROWSKI: So collaboration first. Fostering Joy is a collaboration and has been a collaboration from the start. These are the individual who are part of that core team that was mentioned. Importantly, the core team is comprised of parents and parent leaders, individuals who are Deaf and Hard of Hearing and professionals who work in this space. The person in the center is Candace Davies, you may know her. They did a workshop in the conference about a toolkit related to Fostering Joy. What you won't notice is I'm not in this picture so you know what I did? I made a new one and I put myself in there. If the clicker works.
[New slide shows the image moved to the side, and a headshot of Amy on the left side. Text above: “Fostering Joy - a Collaboration from the Start…. (The One Where I Added Myself”.]
>> DR. AMY SZAROWSKI: This comes from a recent publication that we did and it included the picture of the folks and I wasn't in it so in the next slide, there you go, there's me, part of the Fostering Joy core team. We have an interesting structure. In addition to the core team that is pictured here there are working groups. So with the professionals we have a working group and with the families and parent group this is a working group. This helps us to get more things done and allows us to get more people involved. So we are always lacking for, reviewing things, soliciting, and interested in people who might be ready to up their game with respect to Fostering Joy. In this collaboration part I want to talk about why this is unique. It is not uncommon that perhaps you might have a professional group and they invite a parent, one parent to be a representative. Or you might have a parent group and they bring in a professional on occasion for a consultation or something. So it's not unheard of, of course, that parents and family members and professionals would work together. But from the very beginning Fostering Joy said we need to have a group of folks who are bringing all of that he is perspectives in order to think through the ideas of what do we want to do to change the dynamics around the ways that information is presented and families are approached about caring for and supporting their children who are Deaf or Hard of Hearing. I think this is so important because when we strive to bring all perspectives together we can be better at what we do. It's my understanding that this conference focuses on bringing together professionals and parents to the same conference to say how too we make sure that the work that either or all of those constituents are doing is shared among each other and in ways that are positive and collaborative. So despite the fact that they left me out of the picture, I'm not bitter but this idea of bringing in people and having this collaborative is really nice.
[New slide shows text inside a red bar: “Jointly Supported Projects” Three icons underneath for “Hands & Voices”, “DHH Fostering Joy”, and “The Initiative' '.]
>> DR. AMY SZAROWSKI: Danelle mentioned we are supported and here is an interesting thing, too. It's not within either structure of Hands and Voices or the Institute to say here is how we're going to do this work. When we brought this Fostering Joy forward we said we want this to be a collaboration and we had to navigate some things and Hands and Voices is a parent-to-parent and family organization. This is how it should be. They were excited about supporting the idea of Fostering Joy and much of the work they do certainly involves joy and how did they needed to support professionals outside of the scope. So we, the Institute where I'm the director was able to say we can do the professional piece. Let's make sure this is a partnership. So some of the times when we are thinking about collaboration it does rare for us to step outside of our existing boundaries. That is not to say that either Hands and Voices headquarters or the Institute has to take on all of the projects but to say how do we do this in a way that works for everyone and still helps us to maintain the central idea of we need all the right people at the table in order to really make this meaningful. So one of the messages going forward for folks who might be in this audience is what are the ways without burning down the systems, I'm not suggesting that, but what are the ways in which you might be able to reach outside those systems in order to partner or to establish formal collaborations? It can be done. It does require some creativity sometimes, and it does require good communication about who is responsible and where does this fall? What are the rules that might govern how we work together? But it's so worth it in the be end when you're able to take people whose passions align and say together we can do more and perhaps we can do better.
[New slide showing a word cloud with words such as collaboration, groups, work, people, internet, tools, knowledge, success, together, learning, sources, production, etc.”]
>> DR. AMY SZAROWSKI: So collaboration. Thinking about all the various ways collaboration will happen. It can look in lots of different ways. It doesn't have to be equal partnerships all the time. It certainly can be who takes the lead this time around or what are the responsibilities? Or how do we pull on various team members' strengths? One of the things we like to do when possible with Fostering Joy is to jointly present, but that isn't always possible and sometimes we have to say what does this audience need? Do they need the professional lens? Do they need to hear their parents' stories? Do they most need to hear from Deaf or Hard of Hearing adults who can share their experience and say there is lots of joy to be had in the life of a person who is Deaf or Hard of Hearing. Any of those perspectives are enormously valuable and depending on the audience we can see how we best meet their needs.
[New slide: white text in a red block on a white background. Text: The “Creating a Movement” Part.]
>> DR. AMY SZAROWSKI: That was the collaboration part.
[New slide: A photo of a sunset on a lake on the left side with text on the right side, separated by a vertical line. Text: Moments of Joy, Even During Difficult Times.]
>> DR. AMY SZAROWSKI: Now creating a movement part. Hear you go. One of the thoughts here is that moments of joy are individual, so what brings joy to a person is quite dependent on who that person is, but one of the things that you will hear today more than once, because I do want to emphasize it is the idea that even during difficult times we can find joy. Sometimes people think someone might be a very positive person or a glass half full kind of person. Of course it's easy for them to find joy because life is fine for them. What we have found through the movement of Fostering Joy is that some of the folks who benefit most or report to the core team about really benefiting from this are those who are going through lots of difficult times, who have a significant number of struggles who are able to say but what this idea of focusing on joy gives me is more space to notice the joy, more opportunity to frame it as joy and not as a fleeting moment, more opportunities to look for joy in every day, even when the majority of the day might be hard or stressful or challenging, I can still find moments of joy that help me to find my calm and my center and my peace. I think this is relevant in part because of our global situation, having had the last couple of years where most of us were working from home or being at home or dealing with any number of challenges. I don't want to live in that space but I want to acknowledge that the last couple of years have not been easy for almost anyone. I took this picture here at the north shore of Massachusetts, near where I live on a morning walk on a day that was hard. But that picture for me is a reminder of looking at that calm serene space. Maybe you don't like the ocean so it's not that for you but for me this is a picture that is a moment of joy and because I recall when I took it I'm also able to say joy in the midst of chaos I can center on that joy. For professionals, Deaf or Hard of Hearing adults and families raising and supporting children who are Deaf or Hard of Hearing, we can still find those moments of joy. Even when things are tough.
[New slide: Photo of a toddler clapping hands on the left side, with text on the right side separated by a vertical white line. Text: Fostering Joy: Changing the Conversation From Mitigating Challenges to Celebrating the Child”.]
>> DR. AMY SZAROWSKI: So Fostering Joy wants to change the conversation. This was mentioned in the introduction. The idea of mitigating challenges, how do we reduce challenges, that's how a lot of professionals approach this work. So if you have a young Kido, cute like this one, maybe she doesn't want to wear those hearing aids so you have difficulty keeping them on. That's a challenge we might address. A lot of times in a professional appointment with a family member there is a focus on what is the challenge and how too we work to address it? There are goals, treatment goals, therapy goals, and that's the way that the services are structured. I'm not naive to the idea, I have worked on those systems, SERM, but I think there is much that we can do when we change the conversation to ask around what is your child doing or what are the experiences you are having in your family that are bringing YOU joy? What are you seeing in terms of your child's growth? Tell me about what went well this last week or since I saw you at our last audiology appointment three months ago I'm curious, what are you seeing in terms of your child's success or if you're using sign language with your child are you noticing your child using any signs or hand shapes or approximations that you're excited about? It may be that for a particular child we might have expected a certain amount of this many signs, and they're doing this many SIPZ, so it's not as much as this. But when you phrase the question around tell me what's exciting about what you're seeing your child doing or how they're growing, how you are connecting as a family, those are the questions that allow families the space then to think about you know what's really cool? Before I thought sometimes my child was doing this but now I see them signing momma and I know that's me. It might just be that the child has learned that one sign and as a speech language pathologist who is supporting a child you might have in the back of your mind we were expecting a little bit more growth but when you center on what is exciting for you? How do we help you foster and nourish that? It helps families to feel good about what they're doing to prime the pump a little bit, to get them thinking about what are the things that I really want to notice about my child so when they're doing this or maybe they're doing something that's like momma but not exactly but I say momma and the child says, yeah, oh, that's it! Those moments are meaningful. That's part of what Fostering Joy wants to do, not to gloss over or pretend that negative things don't happen or that raising or supporting children who are Deaf or Hard of Hearing doesn't have some difficulties, of course it does. But when we move from a problem focus to a joy focus lens really good things can happen.
[New slide: Snapshot of a child with a parent, both are playing with a toy piano. Text inside a red circle on the left side: Bringing JOY into the conversation about supporting children who are deaf or hard of hearing”.]
>> DR. AMY SZAROWSKI: So family members certainly, lots of families that I've worked with will say they love their child, they experience joy at home and things are fabulous and then they come to the professionals and the professionals might not ask questions in ways that make them feel good about what they're doing or they feel like I'm not doing enough. Right? Even though lots of family members have lots of appointments, lots of meeting demands. There might be siblings, other medical appointments, there may be a lot that's going on. One of the things as professionals and Deaf or Hard of Hearing adults or mentors who might be in this space is to think about how do we bring joy into the conversation with the families? Right? I think we can do a lot by letting families understand and know and appreciate when we are seeing joy. I was working and looking at this picture thinking about I was working with your child and there was this ah-ha moment and I was just struck by that. Right? So sharing those moments of child success. Maybe you share something with the family that's around the lens of, we've been working and working at this and I saw that your child felt pride in sticking to it and continuing on. Doesn't always have to be an achievement, it can also be like, I'm really trying here. All those things are great, right? And when we ask families opening the session, let's say they're coming for an appointment with a professional and we say, before we start with the topic that we need to discuss, I want you to tell me something that's really brought you delight this week. Between you and your child. Or tell me a time when you and your child were connected and you felt like, oh, this is the magic, this is where family members feel like this is why we became a family, this is why we wanted to be parents or caregivers because of moments like these. As an aside I was in a meeting recently and this was a professional meeting not a Fostering Joy meeting. Been working with this group for a what I will, we meet monthly or more on Zoom. Delightful people, I like them very much. We decided to take a moment and pause the agenda and talk about why we got into the work that we do. So these people that I've known for some time, years, I got to know on a deeper level and feel much closer to them because they shared their story, because I was able to find out why they're passionate about the work they do. It was so delightful and I thought why, why are we not doing more of that? I have adopted -- I jumped into this Fostering Joy movement so I feel like when I tend to do this pretty well and quite often with families, and yet with my professional colleagues I haven't really done that. I haven't really asked, what brought you to this work? What makes this work -- what fuels you up? What keeps the fire burning? I thought there is much that I can also grow in materials of how I think about bringing joy to the work that I do not only in support of families and children who are Deaf or Hard of Hearing but all of us maybe have in our own spheres where we can put on the a mindful and joyful lens and see what happens.
[New slide: “Embracing the JOY”. Snapshot of a sun-kissed group o f people jumping in a grass field. Text on right side: Parents can ‘find joy’ even in challenging circumstances. Professionals can facilitate or hinder joy...there is an impact. Professionals show up” in...overwhelm, burn out, or joy”.]
>> DR. AMY SZAROWSKI: Okay. So we have talked about how parents and family members with find joy even in challenging circumstances. We will talk about the science in a minute about why that really is possible. And we've talked about professionals and how they can either facilitate or hinder joy. One of the things I think that's important to know is that you do have an impact as a professional. So if you're thinking, oh, joy, that's not for me, then you still have having an impact and it might be that you're hindering a family's joy, that's not so good. So professionals, thinking about how do we show up? Do we show up in terms of I'm overwhelmed and burned out or are we showing up in joy and letting families know that we are fortunate that you are sharing yourself and your lives and your children with us. That's a really nice space to be in. I think families know it. When professionals show up in various ways, perhaps it's on us to be mindful of that. Not only are we trained in our respective field and disciplines but also we are in the business of caring for and supporting families and children. That really needs to be something that we attend to as well.
[New slide: white text inside a red block on a white background: “The Family Centered Part”.]
>> DR. AMY SZAROWSKI: Now we're going to move on to the family-centered part.
[New slide showing a family group shot with text on the right side: “Being Family-Centered”.]
>> DR. AMY SZAROWSKI: Being family-centered. It's interesting to think about how different dynamics really present in the work that we do. Sometimes we are limited by our structures. So if you have appointments, you're an audiologist and you have appointments every 20 minutes it can feel like, how do I get in there with families and get to know them when I have to quickly move on to the next. Even if you have longer sessions, let's say you are an ASL teacher or a speech language pathologist or doing something like that you might have an hour-long session and still it can feel like it's tough to do that. So being family-centered in part means also identifying with the family what are their goals, not only goals like I want to accomplish this list of things but what are you hoping to feign from this? Sometimes as professionals we come into these settings and we have an idea paced on our knowledge of development, right? We expect the child to be growing in a certain trajectory. Sometimes our own agenda gets in the way of asking, really, what would be meaningful in your family context? In your family, if children are able to understand who grandparent are, maybe that has such significance that we spend more time on that. Instead of thinking quickly, we can talk about families and move on. Maybe we dive in deep, because that would be significant for that particular family. I have two kids as I mentioned and I showed you a picture, so I came from a family of four kids. I just can't even imagine all of those competing demands. This week we had soccer, baseball, we had a play, so just thinking about when there are multiple family members, multiple children and multiple demands within each of those children for caregiving there is a lot. It's important for professionals to capitalize and make sure we are providing the best care we can in the time that families are willing to share their space with us.
[New slide: “Family Stories Matter”. Snapshot of a child sitting at a kitchen table with two parents at their side, all preparing a meal together. Text underneath photo: “The joy we feel has little to do with the circumstances of our lives, and everything to do with the focus of our lives - Russel M. Nelson”.]
>> DR. AMY SZAROWSKI: All right, thinking about family stories. The joy that we feel has little to do with our circumstances and everything to do with the focus of our lives. We tend to think if we win the lottery, if something significant happens, did you see the power ball was up to 1.5 billion? I can't even imagine that. Turns out that really there are certain life comforts, I don't want to minimize those, having enough resources to ensure that your family is safe and sheltered and fed, all of those things, of course, matter. Yet there are not that many circumstances in life that can significantly enhance our joy without us changing our perspective on that. So thinking about how do we cherish the moments that we have and the things that we already have in our possession or are our arsenal or memories that can help us to carry forward. It has not as much to do with external as it does internal. We will talk more about that, too.
[New slide: “Milestones are Individualized”. Snapshot of a child using a wheeled support walker. An outline of a red heart with “thankful and joy” on top right. Text underneath: “For us, JOY is seeing him smile when he is given an opportunity to be independent”.]
>> DR. AMY SZAROWSKI: I know sometimes the examples that are given are around your child achieving something and one of the things I think for us to be mindful of is the ways in which children "achieve" really are individual, too. There are different milestones for different children. We mentioned at the beginning Fostering Joy supports children who are Deaf or Hard of Hearing as well as children or Deaf or Hard of Hearing with disabilities or Deaf or Hard of Hearing +. It could be that you have a child who relies on devices to ambulate, to walk, so being able to see that child be independent might come at a different age than it does for a child who is typically developing and begins walking on the right trajectory according to medical charts, One of the things we need to be mindful of, any of us supporting families, is that we encourage that joy at whatever that level is for the child who is achieving those individualized milestones. I distinctly recall a conversation I had with a mom in an office who came after another appointment and then came to see me and she was deflated, just, whew. Her comment was, is he doing this yet? Is he doing this yet? And my answer to everything was no. So I said that must feel awful and she said yeah. I said I wonder what it would look like if we talked about what he was doing and she flipped the script. And she said you know what he did. It was amazing he took off his own socks. This is a kid who had motor challenges and he was determined to get in the tub. So it was a little bit of his own defiance and the mom, what she saw is this is the PT, the OT, it's all paying off, look what he just did. But taking off his own socks wasn't on the list of can your child do this that everyone had been asking about, right? So thinking about how do we say for your child, and all that he/she/they bring to the world, tell me about what you're seeing. How do you experience joy? If we're asking growth-related questions I think it's important for us to be mindful of the different ways that growth happens and say sort of demonstrated or shown in the kids that we support.
[New slide: “Families’ Joys Differ”. A snapshot of an adult smiling with a blurred background. Text in a block across his chest: “JOY is communicating heart to heart”.]
>> DR. AMY SZAROWSKI: Families’ joy differs, right? It could be that you have a child who is Deaf or Hard of Hearing and uses a communication device. It could be that you have a child who is Deaf or Hard of Hearing and uses other equipment to walk, it could be that you have a child who is Deaf or Hard of Hearing and has cognitive disability or learning challenges. There are so many ways in which children can be present in the world. So finding whatever it is that, what's your joy? I think it's a very important question for us to ask families for families to ask themselves and then for us to also be pondering as professionals or Deaf or Hard of Hearing adults and what brings us joy and how do we keep that going in our lives?
[New slide with text on top and a photograph showing a Hmong family underneath. Text: “Meeting Families where They Are”.]
>> DR. AMY SZAROWSKI: Thinking about meeting families where they are. This is a family that is Hmong and I know in Minnesota you are probably familiar with the Hmong population and what are the ways that this family mate shows up in your spaces. When they come to the parent groups you are hosting or the clinical spaces where you are providing services, how do we meet families where they are? It's important to know that I need to meet them where er, recognizing the fact that I can't understand all of the language, or understand all of the holidays but I can say it's not your job to teach me because then it feels like the onus is placed on the family, but I can be open to learning. That's a different framing, to be able to say I really enjoy working with your child. Can you -- are there things that I could do better or know more about or directions you might point me to for resources that I can learn more so I can support you and your family and honor who you are, where you come from the values that you hold. I think I'm seeing joy as a value, rather than I'm sad today or joyful tomorrow, I'm seeing joy as a value for the world and in that space it has power to say I want to be a person in the world who is joyful, who can exude joy, who attracts joy, because that happens, too, and who can engage in difficult conversations and do hard work and still do it in a way that feels meaningful and joyful for me and those around me.
[New slide: “Meaningful Family-Professional Collaborations”. A snapshot of a child talking to two adults, a child, and an infant on one of the adults’ laps. Text in red block across the bottom.]
>> DR. AMY SZAROWSKI: Part of that I think involves meaningful professional family collaborations. We have talked about Fostering Joy being a collaboration of those folks as well as for Deaf or Hard of Hearing adults. Also when we frame the work we do as being collaborative, which I think you have been doing during this conference, it can help to ensure that all of those who are involved in whatever processes, maybe this might be an example of early intervention, that everyone is sort of getting their needs met. Pause that's true able to say, as a parent here I really want to ensure that, X, Y, Z and the professional might say that sound great. I had some other thoughts but I love that you're wanting to put that out there so let's think about ways we can adapt what we might be doing to ensure that we are meeting what it is that you are wanting for this. So powerful. It doesn't sound hard and yet our systems have not always been set up in ways that support this collaboration. Sometimes it exists today where professionals feel like I know what I'm doing, I'm coming in and I'm going to work my magic. It works so much better when families are involved, when families have a say, when it is truly collaborative and then the success belongs to everyone and to the child.
[New slide: “Check out Our Story” On the left side, is a screenshot of a mobile phone with a logo consisting of colorful hands arranged in a circle with “Early Intervention” in the middle. Three individuals’ photos are stacked vertically next to the logo. Text on right side: “Defiant Joy: The Parent-Professional Collaboration Behind the Fostering Joy Movement. By Amy Szarowski and Candace Londow-Davies”.]
>> DR. AMY SZAROWSKI: I want to share with you an article that was written with Candace Davies, part of the core team and from men minimum, and there is a link here that you can just search for it. It came out in September in the Journal of Odyssey and you can order the magazine, or you can download the article and give you details. The pictures here are myself and members of our team that did a presentation that went out through MJAN and if you are interested in learning about take the tight, there are webinars that have been recorded and we can link to those and share that information with you, too.
[New slide: “What brings you JOY?” The Fostering Joy logo is on the right side, consisting of a parent holding an infant, with a red heart on the infant’s chest. Text along the outline of the logo: “#DHHFosteringJoy”.]
>> DR. AMY SZAROWSKI: I want to ask you what brings you joy. Feel free to type that he is in the chat and when we are wrapping up, Danelle will share the chat with me and we can address those. Think about your role as a parent, a Deaf or Hard of Hearing or as a professional and I understand you might have more than one of those roles, what are the things that bring you joy as it pertains to children who are Deaf or Hard of Hearing? Go ahead and jot those down. I become joyful when I see parent/child interactions. When I see the parent adjusting for the child's communication needs or when I see the child engaging, getting the parent's attention and sharing with them something that is of value to the child or what they are thinking. I love that interaction piece and that's a gift to be able to observe that, be part of it, sometimes help facilitate it or to know this is good, this interaction is what will help this child to grow and thrive and do well in life.
[New slide with whit text inside a red block with white background: “The Backed by Science Part ''.]
>> DR. AMY SZAROWSKI: The SBS-backed part. In addition to children and families I really like brains so I want to tell you about the science around Fostering Joy because I think that's important, too.
[New slide: “Joy is…” Red text underneath: an intense, temporary feeling of positive emotion as a consequence of a just right fit between our identity and the moment we are experiencing”.]
>> DR. AMY SZAROWSKI: I will give you a second to read this.
[New slide: “Striving for Joy” Inspirational landscape photo of trees with hazy mountains behind it. Text in the sky: “Joy subsumes happiness. Joy is the far greater thing. - Desmond Tutu”. Text on right side: • Happiness is dependent on external circumstances. (e.g. eating chocolate, hitting all the green lights). Not long-lasting. Happiness is often associated with feelings of the senses; it is an emotional response. Joy, on the other hand, comes from within. It is a much more enduring feeling that persists no matter the circumstance.”]
>> DR. AMY SZAROWSKI: In short the science around joy talks about how you might feel happy and the things like when your day goes smooth and you get that internal satisfaction and happiness. Joy comes from within. It's enduring and less related to life events and more related to adopting that perspective.
[New slide: “As breathing is tomeditation; intentionality is to fostering joy”. Snapshot of a person’s hands holding a stone necklace. A statue of Buddha sits nearby.]
>> DR. AMY SZAROWSKI: One of the parallels that we draw is this idea of breathing, all of us breathe all the time but when you meditate you become intentional about it, you slow your breathing and you focus on it. In similar ways we have moments of happiness during our days but when we become focused on it and slow down and think about it more we can actually foster that joy. There is brain science that talks about why that matters.
[New slide: “intentionality & Joyfulness”. Snapshot of a lighttower on the beach shore at sunset. Text on the right side: “Create more Community. Practice Gratitude. Connect with Something Greater (nature, poetry, sunrises).”]
>> DR. AMY SZAROWSKI: Other strategies for fostering your own joy can be creating community so maybe that means reaching out to people who are here so you grow your networks in the parent support group or of professionals who are dedicated to joy, practicing gratitude is another way to foster that joy and with something greater. Research talks about this can be in different ways so for some people, nature, poetry, for me, sun rises, for some people religious experiences. When we connect with something greater we can feel more joyful and we get our brains primed and ready to do that.
[New slide with white text inside a red block on a white background: “The Resources Part”.]
>> DR. AMY SZAROWSKI: I want to share about Fostering Joy journals in Spanish and English
[New slide: “The Joy of Journaling”. A book cover on top left: “Fostering Joy, Journal for Kids”, and a pair of journals on top right, in English and Spanish: “Fostering Joy”.]
>> DR. AMY SZAROWSKI: … and we have Deaf or Hard of Hearing people who take the charge on creating this journal. There are prompts for kids who can fill it in and people who are Deaf or Hard of Hearing themselves said they think this can be helpful and I love that, it's a great example of a positive collaboration.
[New slide: “Resources are available”. Bottom left shows an inspirational postcard with red hearts against a stone wall with the Fostering Joy logo underneath, text: “The Joys of Raising Deaf or HArd of Hearing Children”. Logo for Hands and Voices on the right side. On the right side, is a list of tip sheets that can be downloaded in multiple languages.]
>> DR. AMY SZAROWSKI: There are tip sheets and Candace is putting links in the chat and we have lots of language and parents and professionals can share that he is. Look at the strategies that people are doing to Fostering Joy and they gave us responses and these handouts were generated out of their feedback so very helpful. Use those prompts with we can think about how too we build more joy
[New slide: “Looking for the Positive”. Text on right side: “Prompts for opening a joy-filled family session.” A group of dialogue bubbles with prompts inside below: “What has brought you joy this week? What is your go-to joy filled activity for your child? What is something your child does that always makes you smile? What did you celebrate this week?”]
>> DR. AMY SZAROWSKI: …and finally if you're interested in doing more, reach out to Candace Davies for the family side
[New slide: “Join the Movement. Logo for Fostering Joy on the left side. Text on the right side: Candace Lindow-Davies: candace@handsandvoices.org. Amy Szarkowski: amyszarkowski@cccbsd.org.
>> DR. AMY SZAROWSKI: ...or me for the professional side and we would love to hear more for you. Thank you for the taunt to chat with you, I will hand it to Danelle.
[Amy’s window closes. A pause as the slides window closes and is replaced by Danelle in the left side window, while Amy returns on screen in the right side window. Danelle signs while the interpreter voices.]
>> DANELLE GOURNARIS: Hello, Amy, hello everyone. Thank you so much for the wonderful presentation about Fostering Joy. I completely agree with you that the collaboration is critical from the start. As a professional who works with families and meets with families where they're at, that's so critical. We need to meet them where they are at instead of the other way around. Thank you for highlighting that. We have several comments about how those attending Fostering Joy. I will share some of those now. I have to scroll a bit to read so thanks for your patience.
[Danelle looks down as she reads them out one by one.]
>> DANELLE GOURNARIS: Several people mentioned items that foster joy for them, their grandchildren, golf was mentioned, seeing this person's son advocating for themselves. Another comment is that students and movies bring them joy. Being a team member brings this person's joy and transitioning to adult services, wonderful. When students find their voice and are able to express themselves, that brings this person joy. Seeing my son advocate for himself brings one attendee joy. When my daughter feels proud of herself and excited, and she shouts something to me that she accomplished, that brings another person joy. That is jump such a wonderful feeling, seeing that light bulb go off for someone.
>> DR. AMY SZARKOWSKI: Me, too, to see someone just get it. >> DANELLE GOURNARIS: Yeah yeah, that's a great one. There are a few more I will highlight here, seeing students and families, also my observed family. Another comment says my husband and my toddler, coffee and holidays.
>> DR. AMY SZARKOWSKI: I love all those things, too.
>> DANELLE GOURNARIS: Moments with children when their eyes light up. Another is helping parents see their inner strength, that's a great one. I really like that one. Seeing a smile, and there are a few more, I love to read these, they are so exciting and joyful. It's fun to read them, you're right just even reading these or seeing what people write brings you joy. A few more are coming in here, reading a book. Some are similar, some mentioning parents, students, colleagues, co-workers. Another is doing dad jokes with my kids, cute ones, jokes always bring laughter and joy, which is critical, yeah. The look of pride on a student's face when they achieve something. Students bring me joy, students' joy, brings me joy. And empowerment for my students, the community. Okay. Wonderful. I think that covers it. I hope I didn't miss anyone's comments, it was a length I didn't list, I think a lot of us have a lot of joy and it does connect with the families we serve and the students that we serve so that's really nice. Now we will move on to questions and answers. Some individuals have asked questions. We have them ready. One question is I would love to hear your thoughts on how we can foster joy when working with families with a child who is sick with a terminal illness.
[Amy speaks while the interpreter signs.]
>> DR. AMY SZARKOWSKI: Okay. I don't want to minimize the challenges and I think that's really important, too, that to come across -- to be authentic with families and to let them know we can appreciate their pain or their struggles. One of my least favorite things is when people say I understand exactly what you're going through, unless you have a child who is also ill, you probably don't. So I think we need to be cautious in our wording and while we want to connect with families we don't want to minimize the gravity of what those situations might be. Yet, I think if you have a child who is quite ill one of the things that families often want to do is to make sure that they're creating memories. If you have a child who has a terminal illness, there could be a time when the child is not there and families will look back and say did we capitalize on the time we had together? One of the things that we might do is to say, what brings your child joy? Even if the child is sick and dealing with pain, there might be times where the child feels joy. Maybe that's laying in bed with parents or siblings around them and watching a cartoon that they most appreciate and laughing. Maybe the child gets to dress up as their favorite cartoon character for Halloween and they liked it so much they get to wear that costume every day for three weeks, I don't know. We can be flexible with the RAULZ in order to ensure that the child is experiencing joy. When children experience joy, those who care for those children are infused with joy, too, right? Several of the people commend that, when I see my children's joy I feel joyful. That can be one way to fill our cup, to center that. So one strategy is to ensure the child has moments of joy even in pain or struggle. And another strategy is to ensure that parents and caregivers have an opportunity for their own joy, because when you are taking care of children in difficult situations it can be that you're giving so much that you might not remember those things about taking care of yourself. Right? Sometimes it can feel hard to find the time, so busy with caregiving or working several jobs or so busy with the medical appointments, how do I do that? But securing the time to ensure it can happen is important. For me those early morning sun rise walks, everyone else is still sleeping. So I don't schedule appointments at that time, and my kids are still sleeping, my spouse is sleeping, I can escape, even if it's 10, 15 minutes, catch a sunrise, change and shape my whole day when I get to see that. For you, not everyone likes to get up that early although with the time change it's different than it was, it's not as early as in the summertime but still, finding things that bring you joy. Maybe that is that your time is that first cup of coffee where you actually get to drink it hot because the kids are still sleeping and throughout the day you try to take a sip and you forget where you put your cup and by the time you get to it it's cold. But that first cup of coffee or tea might be what you need to say. This is where I'm going to center my joy for the day. Finding whatever that is for you, recognizing joy for children, joy for self, joy for family, also important. Where does our family find joy? So my family doesn't enjoy the sunrise and I don't want them there because that's my joy, but my family joy, there are things we enjoy doing together and making the space to do that. Again, it doesn't have to be big, it doesn't have to rely on having a lot of financial resources, right? Rice Krispie treats are not expensive to make and they add joy to many, including my children. Maybe you can add chocolate chips. Maybe you can spend a Saturday making them together.
[Danelle signs while the interpreter voices.]
>> DANELLE GOURNARIS: I like those ideas, sometimes just being creative. I have one story I'm happy to share. There was a father who had a child who was Deaf and the child also had additional disabilities and the father was a great skier, an excellent skier. The father was really grieving the loss of the idea that the son wouldn't be able to grow up and ski with him. So we worked with him and said you know what? Let's find a way. Eventually, I don't know how but eventually they found a way to have the son essentially -- he was three or four years old at the time. He was essentially pulled on his back, he was tied on to the back of his father so his head was above his shoulder, it was kind of like a backpack situation and he was laughing and having the time of his life. So that experience for that father to be able to do that with his son, maybe his son will never be able to ski on his own but that experience of them doing it together and something that the father loved, it was joy-filled, it was so inspiring. Okay, I see several -- a lot of clapping emojis, so a lot of applause from the audience in the chat. I don't see any additional questions here. I see one more comment, oh, one more question saying how do you balance finding joy and finding and ensuring that that joy continues, the endurance of the joy for the child or the student, if you could speak to that?
[Amy nods and thinks for a moment before speaking while the interpreter signs.]
>> DR. AMY SZARKOWSKI: If we remember that joy is more internal and it's more lasting than happiness. Happiness being in response to external events, right, to say that I need to do a practice that helps me to be joyful so gratitude is one of the ways that is like a fast track to joy. There are lots of gratitude strategies, there are gratitude journals, for example. One of the members of our core team signed up for an app that sends her a question every day and so every day it's a question about telling me something -- what's something that brought you joy today. Because she has two little kids, she said sometimes she doesn't have time to write much, it's a FLAZ, sometimes she takes a picture and up loads it but at the end of the jeer she has an entire journal of joy and she said that she personally didn't do such a good job with baby books because that takes work to keep up with them but this is something she can capture, print, save and pass on to her children so they will know every single day their mom thought about how they brought joy to their mom's life which is a delightful and powerful way to do that. Building in strategies. Some people think journaling takes effort. There is a lot of evidence around one sentence journals and bullet journals and strategies to capture yourself and center yourself. For some it could be a raw teen or a ritual, so you like a soft light that you like to light up or KAJDs, but I feel like as soon as I said candles I think it sounds very woo-woo, but you don't have to be in to yo FWSHGS a or things like that to find joy, but finding routines that work for you. Maybe you drop the kids off at school, you get packed in the car, maybe that's a moment to take a breath and set your intentions for the day. This is what I would like to do today or this is what I would like to be mindful of today. Some people when they turn on a device, when I go to turn on the TV before I do that I want to think about is this how I want to spend my time? Because it can be easy to be pulled in by Netflix and Hulu and all those streaming devices that we end up spending more time there than we want. So asking yourself that question, is this what I want to do? That doesn't mean TV is bad and sometimes it's a wonderful escape and sometimes you may have a show you're lacking forward to seeing, that's intentional and that's fine. But asking yourself is this something I want to do with my time and energy.
[Danelle signs while the interpreter voices. She occasionally looks down to read off a screen off-screen.]
>> DANELLE GOURNARIS: Thank you for that. There are several more comments coming in. One is Fostering Joy specifically is helpful for families with Deaf plus children and or learning challenges. Journaling every day, asking for help from families who have time to do joyful activities really has been helpful. Additionally, another comment to piggyback on that saying when my girls were little and in school their IEP meeting I felt like it was great when the meeting started with going over things that they were doing well. Starting off with those positives. That shifted the tone of the meeting so that it was easier then to transition spew discussing things they needed to work on and improve. I aFWRAE with that. IEP meetings I know a lot of parents dread those meetings. They can be challenging. They know that's true going to hear bad Nazi. So it is anyways to open those types of meetings with something positive and something that brings us joy. I think that does help a family to be grounded as they transition and focus on what they need to work on. That's a great point.
[Amy holds a hand up.]
>> DANELLE: There are more clapping emojis, go ahead.
[Amy speaks while the interpreter signs.]
>> DR. AMY SZARKOWSKI: I want to add a couple of things. A couple more examples that I think are powerful. One is related to IEPs. I worked with a mom who was from a cultural background that was different from the cultural background of the majority of people at school. She strategized to bring in pictures of her daughter who was Deaf or Hard of Hearing in the family setting with traditional attire at a festival that the family had that was related to their culture. She brought that in and said before we talk about IEP things I want you to know this about my child. It helped her not only to show who her daughter really was so everyone could -- it wasn't just a name, you know? Sometimes there is a person -- there are people at the table who know the child or don't know the child as well so they might be talking in abstract terms. This was grounding. And it was really powerful because she was able to say in this picture my daughter who is Deaf or Hard of Hearing and had mobility challenges is dancing with her cousins and at the table was a physical therapist who provided services and the physical therapist was like, wow, how did they do that? And the mom explained the supports they used but the child was motivated to do it because it was with the family at this festival and the child was demonstrating abilities that perhaps hadn't been demonstrated in the school setting so it was a nice way to say before you start with your "stuff" let me frame it for you, let me show you what I see my child doing. The mom reported after she could see that the team kind of institute who her child was, she was better able to take in their feedback. She didn't want to come in and be defensive or ignore the fact that her child had need that could be addressed with therapies and supports so by being able to ensure that the team appreciated her daughter, then mom, herself, could open her mind and heart a little bit to be able to say, yep, there are different things we need and I can hear what you are saying in a way that's better. That's one example.
[Switching interpreters.]
>> DANELLE GOURNARIS: I love that idea, I think it's great.
>> DR. AMY SZARKOWSKI: My second example is a professional who is part of the Fostering Joy working group and one of the things she shared with the team is that she would every week ask the parent about joy questions and at first mom seemed resistant and she was like we're not here to talk about that, we're here to focus on therapy. The next week -- you know, but after a couple of weeks, mom came in and said are you going to ask me the joy question? So the provider did ask the joy question and mom had an answer ready. After several weeks time mom reported to this professional that she would be looking during the week that she had therapy sessions every Thursday and so by Tuesday if she didn't have something in mind she would be looking at her child and concentrating on what's the joy moment that I'm going to bring back to the therapist and share this week, really shifting her mind set from, joy? What are you talking about joy? This is just hard! To, I'm lacking for joy moments because I know you're going to ask me about those and that's going to set the stage for our sessions. I loved that example because as it was described to me, this mom was very resistant, initially but really came to a place where she also embraced that joy and was looking for it and really seemed to move forward in that relationship, the collaboration between the professional and the parent to be able to say together, we can be looking for these joy moments and helping to build more of them.
>> DANELLE GOURNARIS: Those are such great ideas. I am seeing a few more questions here. One is do you have any good book recommendations for us related to Fostering Joy? I'm not sure if this person is a professional or parent so I guess either, just let us know.
[Amy nods.]
>> DR. AMY SZARKOWSKI: Well, there are joy-related books and one of the things that we have been doing is a book group. So if you're interested, you can sign up. We have two Facebook groups, one is for families and it's closed to families so that families can share just about their own experiences. If you are a family member look for Facebook Fostering Joy Deaf or Hard of Hearing and sign up for that. If you are a professional, there is a Facebook group for professionals. You can sign up for that and learn more about those book groups. So it's not regular, regular like every month but we have been picking a book and diving in and taking a break and thinking about what it means for us. I don't have a full list of recommendations right now, but I can tell you a couple that we have read. One of them is "Ik -- guy "and it bore rows from Japanese cultures where those that live in the blue zones, those that live a really long time and it explores people who live a really long time particularly on the islands of Okinawa and looks at their lifestyles and what are the ways of their lifestyles that help them to live happy and interesting lives. There is another book of strategy called "the Strategy of Joy '' that looks at the perspectives of what it means to be joyful. There are books out there and feel free to join us for upcoming book sessions if that's of interest to you.
[Danelle smiles and nods.]
>> DANELLE GOURNARIS: I am involved with a Facebook Fostering Joy for Professionals and I do enjoy reading the quotes that several people post. It's inspiring, it truly is. I'm seeing an additional comment here saying I love those stories that you've been sharing, additional clapping and applause and a greater appreciation for each other, there is another comment saying I love the stories about the mom looking for joy every week. With that I think that's all we have. In terms of questions and answers. Any final thoughts that you would like to share or parting words, is a favorite quote on joy? Anything to wrap us up?
[A pause while Amy thinks.]
>> DR. AMY SZARKOWSKI: You can choose how much you might want to be involved with this joy movement or not. One of the things I mentioned in my introduction is that I'm a joy ambassador and that is our way of saying I'm somebody who raises my hand to say I commit to this idea of being joyful, finding joy in my work and helping to spread that joy. That can be what you do, on a permanent level make a commitment to say I want to infuse my work and life with more joy. If there are things that you want to do to get more involved, please do. We absolutely welcome that. I will say that the resources that have been mentioned, there is a website for the family group which is on the Hands and Voices website and there are journals that we charge for but there are other things and we welcome your suggestions around what the Fostering Joy team could be doing to fill full your need as professionals, as Deaf or Hard of Hearing adults, and we like this and are super committed to doing it but what are the things we might be able to create or again rate or do as next steps to help this movement keep going. So your feedback to myself, to Candace is more than welcome. We appreciate that very much. I just want to offer my thanks to you, Danelle, for arranging this conference and providing me the opportunity to speak on this platform to those in the audience. Thank you for your attention. And for your excitement and enthusiasm about Fostering Joy.
>> DANELLE GOURNARIS: Absolutely. Thank you, so much. Just to let the audience know, we have been keeping track of the links that were shared. We will share them and Dr. Amy Szarkowski's PowerPoint will be posted on the virtual platform and available for download if you are interested. All of the resources will be there. If there are any additional questions, please feel free to email me and I will pass those on. Oh, I see one more question that just came through, are you available?
[Amy nods ‘yes’.]
>> DANELLE: Wonderful. Someone mentioned that Stephen Covey, if you are interested, has materials about circling around joy and what is within our control and what is not within our SFAER of control. Are you familiar with those materials?
>> DR. AMY SZARKOWSKI: Yes. Somewhat. Also those ideas of spheres of internal the internal locus of control and the external locus of control and where does the sense of control in your life come from. Many people have an external locus of control which means they tend to think those things out there are what influence us and make us happy or sad or joyful or not. The more that we can internalize that locus of control, there are lots of studies and positive psychology that talk about greater levels of life satisfaction, greater levels of subjective well-being, greater levels of reported happiness in individual who have an internal locus of control, that idea of actually I'm more in control of my emotion and my state than the other things around me. So when you take ownership of that, it's really quite empowering to be able to say even in the situations where life is challenging, I can control how I respond to events. You might have a child who is Deaf or Hard of Hearing and has medical challenges as we mentioned by one of the other people who asked a question. There are lots of things beyond your control. What are the things that you can control? Maybe yourself, right? If you're a parent you can't really control your kid, as much as we want to sometimes. But what we can control is ours and our reactions to things. By developing a routine or practice of being in joyful and mindful spaces we can better than control our reactions to things that do happen. That is beyond our control so helping to bring that focus inward. That idea, too, of intentionality is something I think that's important to this joy movement is being intentional with it, not just oh look my child is being delightful, frolicking on the floor and isn't that so cute. Sometimes that's spontaneous and we do like to notice those things but also -- I have a daughter who had a birthday this week and I decided, I want to soak her in because it's a precious age and birthdays for me are times when you think back over the last year, how things have changed. I was looking at her and I started to look away and I thought to soak this in because she was just kind of beaming, you know? So it was an extra few moments, but it was this kind of heart connection because she also felt it. She felt I did a better job of not just acknowledging her and moving on but acknowledging her and being with her. It was lovely. That moment from Thursday that has carried me over the last couple of days and I've kind of just held on to it, you know? Literally three seconds but it was three seconds of there's my girl, she's getting bigger but in that moment she was just who she is right now. I think there are lots of ways. I don't want to superimpose my ideas on others and I want to recognize for sure there are differences in cultures and ways that people experience joy in their life. But those ideas around how do you bring it back to being in the moment. Intentionality and what is within your sphere of control are positive strategies for helping you to live more joyfully in your life.
>> DANELLE GOURNARIS: Yes, joy can certainly be from within you're absolutely right and it does take practice to find that. Thank you so much for reminding us. We can work on finding joy from within. We really appreciate that insight. Okay. With that, I think that concludes our keynote. Again, thank you to Dr. Amy Szarkowski for joining us today and for joining our conference. It has been a pleasure having you here with us, thank you so much.
[Amy signs ‘thank you’ back.]
>> DANELLE: I would like to remind the audience that we will have a QR code shown at the end with the link, and the evaluation.
[Danelle’s window moves to the side while a presentation screen appears on the left. A QR code is on the right side. Text on the left side. Text: “Post Conference Survey Evaluation link” with website address underneath. Under the QR code i s “Scan Me”. Amy’s window closes.]
>> DANELLE: Also after clicking on the QR code I would just like to add a special thank you to the stakeholders who supported this work and were involved in the planning committee for this collaborative experience conference 3. I would like to recognize and thank them for their contribution and their support. Thank you so much. To those who participated I want to remind everyone of faux things. From the opening keynote yesterday until now we discussed supporting the whole child and our "reboot." I would like to remind everyone how important your continued work is in encouraging children and nurturing them. Nurturing the whole child. I hope that what you have learned through that he is past two days, two and a half days at our Collaborative Experience Conference, 2022, through the break out sessions, the key notes, I hope that we all feel nurtured and will continue to move forward for the benefit of Deaf, DeafBlind, Hard of Hearing in assisting them to succeed and reach their fullest potential. Thank you so much to each of you for participating in the 2022 Collaborative Experience Conference.
[All windows are replaced by a slide with a photo of an apple next to a magnifying glass and colored pencils on top left corner, and another photo of a pile of stacked books on bottom next to the mn.gov logo. Text on top right corner: “2022 Collaborative Experience Conference November 3-5, Thank you for joining!.” Text on bottom right: “Supporting the whole child, reboot.” Video ends.]
