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The Autism & Grief Project is a new online platform designed to help adults with autism navigate and cope with the complexities of grief arising from both death and non-death losses. Alex LaMorie, A.A.S is a member of the project's Advisory Board and brings his lived experience with both autism and grief to this work. Dr. Kenneth J. Doka, PhD, MDiv, brings years of both professional and personal grief knowledge to his role on the project's Development Team. The Autism & Grief Project is unique - just as grief and autism are unique - and the site provides information not only for adults with autism who are grieving, but also the people who are supporting them.
We discuss:
Parallels between the uniqueness of grief and the individual experience of autism What Alex found to be helpul and unhelpful in his grief Being open to different forms of communication and emotional expression Learning to ask for help The goals for the Autism & Grief Project What Alex and Dr. Doka learned from being part of the projectAlex D. LaMorie, A.A.S is an undergraduate student at the University of Maryland Global Campus and autism advocate. Alex's expressive grief artwork was recently featured in the textbook Superhero Grief: The Transformative Power of Loss (2021, Routledge). He serves as an advisor on the Hospice Foundation of America's Autism & Grief Project. In his spare time, he loves movies and TV shows as well as traveling to Comic Con and Anime conventions with his older sister. Alex also loves creative writing and spending time with his New York family so he can eat the world's best pizza and bagels!
Kenneth J. Doka, PhD, MDiv, is Senior Vice President of Grief Programs at Hospice Foundation of America (HFA) and recipient of the 2019 Lifetime Achievement Award from the Association for Death Education and Counseling. He serves as editor of HFA’s Living with Grief® book series and its Journeys bereavement newsletter. He is a prolific author, editor, and lecturer; past president of the Association for Death Education and Counseling (ADEC); and a member and past chair of the International Work Group on Death, Dying, and Bereavement (IWG). In 2018, the IWG presented Doka with the Herman Feifel Award for outstanding achievement in thanatology. He received an award for Outstanding Contributions in the Field of Death Education from ADEC in 1998. Doka is an ordained Lutheran minister and a licensed mental health counselor in the state of New York.
This episode is the second in our 2024 three-part series highlighting the voices of communities who have historically been underrepresented in the grief world. The series is part of an ongoing collaboration between Dougy Center and The New York Life Foundation. We are deeply grateful for New York Life Foundation's tireless support and advocacy for children and teens who are grieving.
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Have you ever heard someone’s voice in your head and suddenly you're transported to a time and place when you were with them? This phenomenon is what Lissa Soep explores in Other People’s Words: Friendship, Loss, and the Conversations That Never End, her book about the intimacy of friendship and how words and language keep people with us, even after they die. After the deaths of her friends, Jonnie and Christine, Lissa found comfort in this idea of them living on through their words.
We discuss:
Lissa's friendships with Jonnie & Christine Grieving a sudden death vs one from a long-term illness The unique nature of friendships formed in our 20's How Jonnie & Christine's come back to Lissa through their words The Russian critic Mikhail Bahktain's concept of double voicing What Lissa's learned about how to support others who are grievingLissa Soep is a senior editor for audio at Vox Media and special projects producer and senior scholar-in-residence at YR Media. She has a PhD from Stanford, where she first started writing about Bakhtin.
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Cristina Chipriano, LCSW, Dougy Center's Director of Equity & Community Outreach and Melinda Avila, MSW, CEO of OYEN Emotional Wellness Center, are committed to changing the landscape of grief support for Latino families. They bring personal and professional grief experiences to the work of ensuring that every Latino family has access to dual language grief support that honors their cultural values.
We discuss:
Cristina & Melinda's personal connection to this work Why it's important now, in 2024, to have this conversation What is unique about grief & grief support in the Latino community The concept of family in the Latino community How grief challenges our sense of self and identity The ways people have been taught to suffer in silence How culture informs grief and grief informs culture Why it's critical for services to be truly bilingual The barriers to accessing services The first thing service providers should be thinking about when meeting with a Latino family Cristina & Melinda's hopes for the future of grief support for Latino familiesThis episode is the first in our 2024 three-part series highlighting the voices of communities who have historically been underrepresented in the grief world. The series is part of an ongoing collaboration between Dougy Center and The New York Life Foundation. We are deeply grateful for New York Life Foundation's tireless support and advocacy for children and teens who are grieving.
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We cannot separate grief from the context in which it occurs. This is true for Nicole Chung whose adopted parents died just two years apart in 2018 and 2020. The world of 2018 was very different than that of 2020. In 2018, Nicole and her mother could grieve for her father, together and in person. In 2020, Nicole was on the other side of the country, grieving for her mother in isolation during the early days of the pandemic. The other context that played a role in her parents' lives and their deaths is the structural inequality that exists in the U.S. economy and end of life care. Nicole chronicles all of this in her new memoir, A Living Remedy.
We discuss:
How hard it is to describe people and what they mean to us What it was like to be cut off from more traditional grief rituals during the pandemic Grieving an unexpected vs (more) expected death Learning to distinguish between guilt and regret How grounding her parents' deaths in a larger context helped alleviate some of her guilt The pressures Nicole felt to care for her parents as an only child in a working class family What it costs to die and grieve in the U.S. The unacknowledged grief of being a transracial adoptee Approaching the 4-year anniversary of her mother's deathNicole Chung’s A Living Remedy was named a Notable Book of 2023 by The New York Times and a Best Book of the Year by over a dozen outlets, including Time, USA Today, Harper's Bazaar, Esquire, Electric Literature, and TODAY. Her 2018 debut, the national bestseller All You Can Ever Know, was a finalist for the National Book Critics Circle Award, a semifinalist for the PEN Open Book Award, a Barnes & Noble Discover Great New Writers selection, and an Indies Choice Honor Book.
Chung’s writing has appeared in The New York Times Magazine, The Atlantic, Time, The Guardian, GQ, Slate, Vulture, and many other publications. Previously, she was digital editorial director at the independent publisher Catapult, where she helped lead its magazine to two National Magazine Awards; before that, she was the managing editor of The Toast and an editor at Hyphen magazine. In 2021, she was named to the Good Morning America AAPI Inspiration List honoring those “making Asian American history right now.” Born and raised in the Pacific Northwest, she now lives in the Washington, DC area.
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Maybe you're familiar with the phrase, "You can't go around grief, you have to go through it." Or, "You have to feel your feelings." If you're like a lot of people, you might cringe and also wonder, "What does that actually mean?" Grief isn't linear, and it's not something to get through - and yet, a lot of people appreciate having some sense of what to expect and what to do with it all. That's where Claire Bidwell Smith's new book, Conscious Grieving, comes in. Offered as a framework, not a formula, Claire suggests four ways to orient towards grief: entering, engaging, surrendering, and transforming. Claire comes to this work with her lived experience of losing both of her parents to cancer by the time she was twenty-five. She's a licensed therapist, international speaker, and the author of five books.
We discuss:
What Claire's parents would think of her work How she stays connected to them The rise of anxiety in grief The pressure to "move on" from grief How those who are grieving carry the burden of educating others What Claire does to manage health anxiety The four orientations of Conscious Grieving How important community can be when it comes to grief Where Claire currently is with her grief Both sides of the compassion coinListen to our previous conversation with Claire, Ep. 109 - Grief & Anxiety.
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In 2015, Diane Kalu was living in Nigeria with her husband and their three young children. One day, about eight weeks after the birth of their third child, Diane’s husband went to work and never returned. A few days later she got the news that he dad died. She was suddenly a widow, responsible for raising three children under the age of five, in a country with several widowhood customs and traditions that are harmful to women. Thankfully, Diane had her mother to help her survive those early days of widowhood. Then, about five years after her husband's death, Diane's mother also died. Through both of these losses, Diane discovered a lot about herself, including a passion for helping others. That led her to start the WiCare Lekota Foundation, an organization dedicated to supporting widows in Nigeria through social, emotional, financial, and educational support programs.
We discuss:
Grieving for her mother Telling her children their grandmother died How her mother supported her after her husband died Grief brain fog and how Diane recovered her memory with singing & sticky notes Widowhood customs & traditions that are harmful for women The ways Diane broke with community expectations for widows Pity vs. compassion The mindset that helped Diane survive What Diane's husband would think of who she is now Starting the WiCare Lekota Foundation to support other widowsWiCare on Facebook
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Whenever Annette & Mel connect, there's always a third person in the mix. That third person is Amy, their friend and chosen family member who died in 2012 of pulmonary fibrosis. While they each had a unique friendship with her, both connections were formative and deep. When Amy died, Annette and Mel's friendship grew stronger, because of their shared grief.
This episode is part of a series focused on grieving the death of a friend. As much as we decry there being a hierarchy of grief, most people still assume the death of a family member is harder than the death of a friend. In reality though, the death of a friend or chosen family member can be absolutely devastating, in ways that catch us, and others, off guard.
We discuss:
Amy's magnetic personality - and what she meant to each of them What they both learned from being friends with her The different friendships Mel & Annette had with Amy, while still being part of the same circle How Annette & Mel got closer through Amy's illness and death Witnessing Amy's rapid deterioration How she tried to have end of life conversations with both of them When they each realized that Amy was going to die What grief has been like for both of them Annette being diagnosed with the same illness that Amy had The "Amy objects" they keep close Navigating new relationships with people who never met AmyLearn more about Annette Leonard and listen to her podcast, Chronic Wellness.
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What if there was a place you could go in your grief and be both perfect and broken? That's the kind of place Laura Green dreamed up with her friend and co-founder, Sascha Demerjian. Together they created The Grief House, a community space for people to explore grief through movement, conversation, creativity, and care. Since she was very young, Laura can remember being afraid of death. Afraid of losing everyone and everything she cared about, especially her mother. Three years after starting The Grief House, Laura had to face that biggest fear when her mother, Grace, died in the summer of 2023.
We discuss:
Laura's current grief expression - clay Why she feels so lucky to be her mother's daughter The fear of death she's had as long as she can remember How her mother's death story has influenced Laura's grief story Why it was so important for Laura to spend time with her mother's body The physicality of death and grief The Grief House's origin story What Laura and her co-founder are dreaming up next for The Grief HouseListen to Laura and co-founder Sascha on their podcast, Portals.
Follow The Grief House on IG.
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In an instant, Leslie went from sharing every aspect of life with her husband Ryan to feeling like half a person. Leslie, Ryan, their two young children, and their extended family were on vacation in California when Ryan told Leslie that something didn't feel right. He was rushed to the hospital where he died of a stroke and an aneurysym, leaving Leslie to figure out how to live their life without him. The people Leslie most wanted to talk to in her grief were other widows. This inspired her to start Vids for Wids - a project to capture the stories of widows in the hopes of helping others feel less alone.
We discuss:
How Leslie and Ryan met as co-workers
The day Ryan died while they were on vacation
Suddenly feeling like half a person without Ryan
Telling her very young children about his death
The early days and weeks of widowhood
How her kids’ grief is changing over time
The power of talking to other widows
What Leslie learned about grief from Ryan
Dating and becoming a remarried widow
Leslie’s Vids for Wids project to support other widows
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What happens when you put your grief on hold? In the summer of 2016, Channing Frye was riding high. After over a decade in the NBA, his team, the Cleveland Cavaliers, had won the Championship. Then, in the fall, he hit one of the lowest lows. His mother Karen died of cancer. Just a month later his father, Thomas, also died. Channing put his grief on hold to deal with the logistics of planning two funerals, supporting his family, and going back to work as a professional athlete. Eventually, with the help of his wife, his friends, and a therapist, Channing started to talk about and explore grief in ways that worked better for him. Doing this allowed him to get more present in his life and explore new passions like podcasting and starting a wine label, Chosen Family Wines.
We discuss:
Channing’s parents and how they supported him in his basketball career What it was like when his parents died Being with his mom as she was dying Putting his grief on hold to take care of business How his grief intensified after his dad’s death Going back to the NBA soon after his parents’ deaths The role alcohol played in his early grief How he got into therapy and started working with his grief Reclaiming significant days like birthdays, Father’s Day, and other holidays How he stays grounded & connected to his parents The connection between grief and the name of his wine label, Chosen FamilyFollow Channing on IG
Listen to his podcast, Road Trippin'
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Dr. Donna Schuurman is back - this time talking about the dangers of pathologizing grief. While the term "complicated grief" has been used in various grief settings for years, it wasn't until March of 2022 that Prolonged Grief Disorder made it into the DSM-5-TR - the Diagnostical & Statistical Manual of Mental Disorders - as an official diagnosis. This conversation explores the concerns Donna and others in the field share about the move to pathologize grief.
We discuss:
What Donna’s learned about grief working in the field for over 30 years
How that work experience shapes her personal grief
Why she is so passionate about this topic
The history of how Prolonged Grief Disorder came to be in the DSMHow diagnoses are social constructs - and who often gets left out of the studies behind these constructs
The dangers of pathologizing grief as a mental disorder
The (short list) of positives of Prolonged Grief Disorder being available as a diagnosis
Other trends in the field to pathologize or "do away" with griefWhat Donna is optimistic about in the field of bereavement
Register for Donna’s upcoming webinar:
Flawed Foundations, Deconstructing Three Contemporary Grief Constructs
Thursday, February 8, 2024.Donna L. Schuurman, EdD, FT, is the Senior Director of Advocacy & Education at Dougy Center. Dr. Schuurman was the Executive Director of Dougy Center from 1991–2015. Dr. Schuurman is an internationally recognized authority on grief and bereaved children, teens, and families, and the author of Never the Same: Coming to Terms with the Death of a Parent (St. Martin’s Press, 2003), among other publications.
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When Sat Kaur Khalsa, MSW, was three, her older brother died in a drowning accident. After his death, he continued to disappear - his photos were taken down and no one talked about him. As she grew up, she learned the implicit lesson to be a good kid because her parents were already dealing with enough. She also learned that grief wasn't something you talked about or shared with others. Now, as an adult, she's working to make sure kids her age get to have a different experience. Sat Kaur is the Family Services Coordinator at Dougy Center where she supports children of all ages and their families after a death. In that role she has a special love for working the youngest kids - those who are 3-5 years old - and helping them have the chance to do what she didn't: talk about their people, express their emotions, and be with others who get what they are going through.
We discuss:
Sat Kaur's role at Dougy Center & personal connection to the work What she remembers about being three when her older brother died How his death changed her family and their dynamic Learning the implicit lesson to be a good kid to not make things harder for her parents Her commitment to being more open about grief with her own child Why she loves working with preschoolers who are grieving How preschoolers grieve similarly and differently to older kids and teens Suggestions for age appropriate ways to talk about grief and loss What adults can do to support preschoolers who are grieving a deathBe sure to check out our Youngest Grievers Toolkit for books, Tip Sheets, activities, and more.
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What does it mean to be grief-informed? In 2020, Dr. Donna Schuurman, EdD, FT, and Dr. Monique Mitchell, PhD, FT, authored the paper, "Becoming Grief-Informed: A Call to Action," which outlines: what it means to be grief-informed, why it's so important, and Dougy Center's 10 Core Principles and Tenets of Grief-Informed Practice. This paper is based on the foundational understanding of grief as a natural and normal response to loss that is interwoven into a sociocultural context. It recognizes grief not as an experience that needs to be fixed, treated, or pathologized, but one that deserves understanding, support, and community.
Donna L. Schuurman, EdD, FT, is the Senior Director of Advocacy & Education at Dougy Center. Dr. Schuurman was the Executive Director of Dougy Center from 1991–2015. Dr. Schuurman is an internationally recognized authority on grief and bereaved children, teens, and families, and the author of Never the Same: Coming to Terms with the Death of a Parent (St. Martin’s Press, 2003), among other publications.
Monique B. Mitchell, PhD, FT is the Director of Training and Translational Research at Dougy Center. Dr. Mitchell is a nationally recognized authority on children, teens, and families who are grieving in foster care, and the author of The Neglected Transition: Building a Relational Home for Children Entering Foster Care (Oxford University Press, 2016) and Living in an Inspired World: Voices and Visions of Youth in Foster Care (Child Welfare League of America Press, 2017), among other publications.
We discuss:
Donna and Monique's connection to this work What it means to be grief-informed Why it's necessary to be grief-informed Examples of responses that are grief-informed and not grief-informed Seven core principles that describe what grief is and is not Three core principles that address how to provide grief-informed support Suggestions for how we can all work to be more grief-informed - for ourselves and othersSign up for our Grief Education Webinar - Becoming Grief-Informed: Foundations of Grief Education. Thursday, January 18th, 2024, 10 - 11:30 am PST.
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The reality for Black individuals and families living in the U.S. is that death happens more often and earlier on than for their white counterparts. In the last two decades, these higher rates of mortality resulted in 1.63 million excess deaths for Black Americans compared to white Americans. Doneila McIntosh brings her personal and professional experiences with this reality to her work as a researcher studying the intersections of disenfranchised grief among African American families. Disenfranchised grief occurs when a loss isn't recognized or seen as valid, often the result of stigma. The disenfranchisement of Black grief is rooted in racism, which influences both the disproportionate rates of mortality and the lack of support for grief and grief expression.
Doneila McIntosh is a doctoral student at the University of Minnesota in Family Social Science with an emphasis in Marriage and Family Therapy. Doneila has a Master of Divinity (M.Div.) in Theological Studies and a Master of Arts in Counseling Psychology (M.A.). Prior to becoming a psychotherapist, she worked as a chaplain for nearly 10 years.
We discuss:
Doneila’s current research on understanding the impact of disproportionate rates of death and grief in the African American community.
Her personal and professional motivation to do this work.
The desecration of sacred Black grief spaces.
How structural racism leads to Doneila and other researchers having to “prove” the reality of disproportionate rates of death for Black people living in the U.S.The disenfranchisement of African American grief.
How the language we use to talk about grief is rooted in culture and how that can be a strength.
The gap in the research literature about Black and African American grief.
Culturally specific interventions to support grief.
How culture shapes grief expression.
Doneila’s work to become literate in the historical & current context of Black grief and the cultural strengths she uncovered along the way.
How her family honors her grandfather’s legacy.
Follow Doneila on IG @doneila_mcintosh
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What started out as an average winter morning ended up being one that would change everything in Melissa Pierce's life. She went to wake up her husband Dave for their son's basketball game and found him unresponsive. Dave had died during the night and the cause of death was never determined. Melissa jumped into figuring out logistics - planning a memorial, getting her sons to school, moving their family, working a full-time job - but eventually she had to figure out herself. It meant focusing on what she was thinking, feeling, and needing in her grief. That shift to prioritizing self-care ended up changing everything, again.
We discuss
How Melissa and Dave met and fell in love
The process of adopting their two sons
How the shock of Dave’s sudden death led to what Melissa calls “Zombie mode”
Being the person who found Dave when he died and how that impacted her grief
Grieving when the cause of death is undetermined
The financial, logistical, and emotional reality of being a solo parent
Having to tell her sons that their dad died
When Melissa started to feel her feelings in grief
The physical toll of grief
Where Melissa turned for support
How prioritizing self-care changed everything
The origin story of the Widow Squad community
Melissa is the author of Filled With Gold: A Widow’s Story, co-founder of The Widow Squad community, and co-host of The Widow Squad podcast.
Listen to The Widow Squad podcast Episode 41- Holidays and Grief: Strategies to Get Through the Holidays After Your Spouse Dies.
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Dina Gachman's mother died of cancer in 2018 and less than three years later her sister died of alcoholism. A career journalist, Dina turned to writing as one way to make sense of these world altering losses. She recently published, "So Sorry for Your Loss," a series of essays that combine personal reflections with information she gathered from professionals working in the world of grief.
In this conversation we discuss:
How recalling memories of her mom and sister has become less painful Parenting a young child while grieving How she realized she needed additional support Finding comfort in the Continuing Bonds theory When grief feels like agitation Approaching the five-year anniversary of her mother's death How her mom continued to care for her even as she was dying The expectation vs. reality of hospice care Using humor as a way to cope - and carry on her mom's legacy Grieving two losses in such close succession Recognizing that grief started when her mom was diagnosed, years before her death The gift of growing up in an emotionally expressive family GIEAs - Grief Induced Emotional AvalanchesDina Gachman is an award-winning journalist, Pulitzer Center Grantee, and a frequent contributor to the New York Times, Vox, Texas Monthly and more. She’s a New York Times bestselling ghostwriter, and the author of Brokenomics: 50 Ways to Live the Dream on a Dime.
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In January of 2022, Adam Sawyer had everything he dreamed of and more. His partner Kara was the love of his life. Their cat Lela was his all-time favorite animal. Their off the grid house, Whiskey Jane, was the best place he had ever lived.
By the end of February, 2022, Adam lost all three of them. Kara and Lela died when Whiskey Jane was destroyed in a fire.
We discuss
Getting "the call" about the fire Being fully immersed in grief with no responsibilities Nature's role in Adam's healing process Examining the ways he tells people about his losses The parallels between grief and his recovery from heroin addiction Adam's first glimmers of hope Finding a new home, a new purpose, and a new romantic connection What it's been like to go public with his story through writing and presentations How Adam stays connected to his griefFind Adam on Substack and Facebook
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It's our fifth annual holidays & grief episode! This time of year can be grueling for anyone, but particularly for those who are grieving. So, each year we put out an episode to help you feel less alone and hopefully more equipped to traverse the next few weeks. Today's guest, Melissa Peede Thompson, M.S., is a Grief Services Coordinator at Dougy Center. While she has lots of professional knowledge in this realm, we asked her to talk about her personal experience of grieving during the holidays. Melissa was six when her sister died of gun violence. She was 13 when her father died in a motorcycle accident. And she was a young adult when her grandparents died. Each loss shaped - and continues to shape - how Melissa and her family approach this time of year.
How her sister's death impacted her parents at the holidays What she remembers about the first Christmas after her dad died Grieving for her her grandparents before they died How the holidays can feel empty, even when the house is full Melissa's realization that grief has left her a little bit "Grinchy" What she's doing to shift how she thinks and feels about the holidays Learning to appreciate being able to spend time with the people who are still alive Why St. Patrick's Day became her favorite holiday Taking the pressure off trying to make the holidays feel the same after someone dies
We discuss:If you missed our past Holidays & Grief episodes, be sure to listen to Ep. 27, 98, 174, 240.
Tips For Getting Through the Holidays & Holiday Plan Worksheet.
Register for our "Navigating Grief During the Holidays" webinar happening on Thursday, 12.7.23, 10 am - 11:30 am PST.
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When Meghan Riordan Jarvis's mother died suddenly, just two years after her father died of cancer, she watched herself grieving from two perspectives. One as a daughter and the other as a trauma-informed therapist. As a daughter she was devastated and deeply impacted on all levels. As a therapist, she recognized in her grief signs of PTSD, post-traumatic stress disorder. The therapist part of her also realized she wasn't getting better on her own and needed the next level of care. Meghan's new book, End of the Hour, A Therapist's Memoir, chronicles the unresolved trauma of her early life, how it resurfaced after her parents died, and how she tended to both her grief and trauma.
We discuss:
Meghan's relationship to memories of her parents How she grieved differently for her father and mother - and why Her childhood experience of grief and how that led to her developing PTSD The signs that let her know she needed the next level of care How she came to write her new memoir The various trauma interventions she tried - and which ones helpedGrief is My Side Hustle website
Grief is My Side Hustle podcast
@meghan.riordan.jarvis on IG
@griefismysidehustle on Fbook -
Bridget was in high school when her dad died of a heart attack in 2020. Their relationship was complicated. She loved the way her more creative side came out when they spent time together, but she also struggled with how he kept a lot of his history from her. In grieving for him, Bridget's had to reckon with two things being true at the same time. The first is that in some ways Bridget’s life became easier and more stable after he died. The second is the reality that she still loves him, misses him, and wishes he could be there for all the milestones unfolding in her life.
This series is a part of an ongoing collaboration between Dougy Center and the New York Life Foundation. We are deeply grateful for New York Life Foundation's tireless support and advocacy on behalf of children and teens who are grieving.
Download a copy of the New York Life Foundation's newest resource for teens who are grieving - Lost in the Middle.
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