Coffee With Caregivers

In this episode of Coffee With Caregivers, Jess welcomes Kari Baker, a woman of deep faith, podcaster, author, and founder of Kind Families. Kari shares her heartfelt journey as a caregiver to her son Brady, diagnosed with autism at the age of three. She discusses the challenges, growth, and blessings she and her family have experienced, highlighting her faith and resilience. Discover how her story has led to the formation of Kind Families (Kids with Invisible Neurological Differences), a resourceful platform for families navigating similar paths, and learn about her advocacy work, experiences, and the impact of faith in her life. Join us for an inspiring conversation about acceptance, perseverance, and the pursuit of creating a supportive community for all. Kari's Websites: https://kariabaker.com KIND Families

In this insightful episode of Coffee with Caregivers, Jess sits down with Russ Ewell, a remarkable caregiver and father of three, including two sons with special needs. Russ shares his family's story, detailing their journey after discovering his eldest son had Down Syndrome at birth and later learning his second son had autism. He talks about the challenges they faced, the learning curve they navigated, and their innovative approaches to ensure their children's development and inclusion. Russ also discusses his work with the Bay Area Christian Church, his technology startup Digital Scribbler focused on inclusive software, and various programs he's initiated to support special needs families. Tune in to hear about the importance of empathy, humility, and community support in the life of a caregiver. Russ's Websites: russewell.com Deep SpiritualityRuss's book: He's Not Who You Think He Is

Peg Kerswell is an author, advocate, and mother to a profoundly autistic daughter. She works for a local nonprofit organization that provides support to caregivers of children with challenges. Her debut book, Girl Storm: A Memoir of chaos, humor, and resilience in the path of profound autism, gives the reader an immersive and visceral account of raising a child with severe disabilities. In another life, she released two albums as musician Margaret Far. She was raised outside of Buffalo, New York, and currently lives in northern New Jersey with her husband and two cats. To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest, please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

About Alice: "I was raised with three siblings, Pake, Reba, and Susie McEntire, two hard working parents, Clark and Jackie McEntire. 11 first cousins, a grandpap, John McEntire, two maternal Grandparents, Elvin and Reba Smith, and one extra special hired hand Louie Sandman, on a working cattle ranch in se Oklahoma in the 50's thru 1980. There wasn't much our bunch couldn't accomplish or trouble we kids couldn't get into. With horses, cattle, rattle snakes, muddy ponds, a ropin' pen, dogs, and worn out pickups what would anyone expect. I wouldn't trade my life for anyone's in the world. We were poor and didn't know it or care.  I married my husband Robert in 1980 and we raised four children on our ranch in Lane, Oklahoma. Children are Vince Beck, Garett Beck Smith, Trevor Foran and Haley Foran. All my children still live in Atoka County, Oklahoma. Our daughter Haley was born in 1986 with a condition called Trisomy 18 or Edwards Syndrome. She was the baby, and her condition was unknown to us at her birth, a complete surprise.  We have done some research, and she is the second oldest living person in Oklahoma with this Syndrome. Life expectancy is about 24 hours if they survive birth. She is 39 years old today.  I worked for Dept of Human Services for 28 yrs and worked for DDSD Developmental Disability Services Division for 5 years learning and delivering services to individuals with disabilities. I presently contract with the State of Oklahoma as an Agency Companion.  In 1986, there were no educational services for children with disabilities in Atoka County.  I helped organize the parents and school administrators to create a coop that served the children in one location. Later that disbanded as the Administrators realized they could provide those services on their own campuses. Education and pushy parents can get things done.  I retired in 2002 from DHS and worked caring not only for Haley but for our parents Clark and Jackie McEntire, who are now deceased.  My husband and I operate two cattle ranches, an Air B & B in Atoka, and a small mom and pop cafe in Atoka. We are very active in our church and attend as many athletic functions as we can for the grands. We have 8 grandchildren and 5 great grandchildren.  I worked for 11 years with the Atoka Trail Riders Assoc. to build a new facility South of Atoka in Tushka, Oklahoma. I am very proud of that accomplishment. My dad helped create this association in the early '60s and the original facility was torn down and we relocated to a beautiful location 11 years ago. We provide equestrian events, rodeos, tractor pulls, concerts, and Bull Ridings. Lots of action. We give scholarships and help with local charities.   I am very civic, religious, politically minded and feel that all these attributes can be wrapped up in a way that we work together and get things accomplished for God's glory.  I just want to add that I never, since Haley was born, have been without help in caring for her. God gave me a blessing and helped me take care of her. I could write a book." To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Graham Caldow is the father of daughter with additional needs and so has personal experience of the issues faced by parents and guardians and the fears they often have about their child’s future. He understands how the journey can be tough, frustrating, and lonely. He knows it’s sometimes hard to imagine a future, where they are secure, have self-dignity, have purpose to their lives and have a community around them. From his own experiences he realized his daughter needed a life plan so that there was clarity on what his daughter wanted both now and in the future. This made it easier to identify options and choose the ones that would enable her to live the life she wanted. Through having this life plan, his daughter has now finished full-time education and has moved to a paid part time job. She is actively managing her own life and finding her own community as well as building the skills she needs to control her day-to-day life. Graham wants to share the approach he’s used with his daughter to support other parents and guardians on their journeys so they can answer that question What happens when I’m no longer around? He believes the legacy we leave our children isn’t just the money we leave them, it’s the skills and self-belief that they can live the lives they want on their terms. Our greatest legacy is to help prepare them for that future. To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Kelley Coleman is a feature film development executive turned author and advocate for parent caregivers and individuals with disabilities. Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports draws upon over a decade of advocacy, gained through her own journey parenting a child with multiple disabilities. Kelley lives in Los Angeles with her husband, two boys, and her son’s trusty service dog.   To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Eileen Lamb, author of "All Across The Spectrum" and “Be The One,” is the founder of The Autism Cafe. She’s also a photographer, podcast host and the Director of Social Media at Autism Speaks. Born in France, Eileen now lives in Austin, Texas, with her two sons, Charlie (11) and Jude (8), and their sister, Billie (1). On her blog, she shares the ups and downs of raising two children with autism, one with profound autism, while being on the autism spectrum herself. To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Tune in for a life update with Jess on new things she has been working on: book number 4, another documentary project, respite work, and more! To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Jason Hague is an associate pastor of Christ’s Center Church, a mid-size church in Oregon, one of the least churched areas in the United States. He is a husband and a father to five children, including Jack, his seventeen-year-old son with non-verbal autism. Jason has written extensively on the subject of faith and autism, special needs families, and his own journey from grief to acceptance of his son’s condition. He blogs at JasonHague.com, and on his Facebook page, Jason Hague, writer. The success of his blog and the viral video he posted there, A Reflection of Aching Joy, led to his first book with NavPress in 2018. Aching Joy: Following God through the Land of Unanswered Prayer was warmly received by church and special needs communities. The book won a Cascade Award for best memoir in 2019. Jason has been a guest on numerous podcasts and radio shows such as Focus on the Family, and his writing has appeared in Christianity Today, Ann Voskamp, Fathom Magazine, and Finding Cooper’s Voice.  To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Crystal Polk is a mental health therapist and Licensed Independent Social Worker in South Carolina, specializing in supporting parents of children with disabilities and medical needs through her practice, Better Tomorrow Therapy. Featured in the film "Unseen," Crystal's impactful work has gained recognition. While she may describe herself as a "nervous interviewee," Crystal thrives in her role on the other side of the chair as a therapist, where her passion for providing crucial support shines through. Her dedication to making a meaningful impact on mental health, sharing expertise, and contributing to the well-being of families facing unique circumstances is evident in her love for being a therapist. Beyond her clinical practice, Crystal actively contributes to professional development by conducting training sessions at institutions like the Medical University of South Carolina (MUSC) and the National Association of Social Workers (NASW), underscoring her commitment to knowledge-sharing in the mental health community.   To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Debbie, at 50, woke up to the realization that life was too short to be spent prioritizing others over herself. She ditched "I can't" for "Maybe I can," shedding her victim mentality and refusing to let struggles define her. Recently widowed, she's more determined than ever to share her message. Her debut memoir, "On Second Thought... Maybe I Can," earned praise from Jack Canfield, co-author of The Chicken Soup of the Soul® series. Through her memoir and engaging talks, Debbie courageously bares her soul, reminding others they're not alone. Life is tough, but she's proof that dreams are worth pursuing. You can follow Debbie at: Tiktok: https://www.tiktok.com/@debbierweiss Instagram: https://www.instagram.com/debbie.r.weiss/ Facebook Group: https://www.facebook.com/groups/maybeican Facebook Page: https://www.facebook.com/debbierweissauthor Podcast: https://podcasts.apple.com/ca/podcast/maybe-i-can-with-debbie-weiss/id1676123222 Website: www.debbierweiss.com Email: debbie@debbierweiss.com To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Jessica Patay is the founder and executive director of We Are Brave Together (WABT), a 501(c)3 nonprofit organization that supports caregiving moms with children of all types of disabilities and neuro-diverse diagnoses. In addition, she is a sought-out speaker, podcast guest, writer and retreat coordinator, fundraiser, mother of three, social influencer, and a champion of self-care practices and their positive effect on motherhood. She is a contributing author to the forthcoming title, Becoming Brave Together: Heroic and Extraordinary Caregiving Stories from Mothers Hidden in Plain Sight. The book is set to release on May 1, 2024. Jessica excels at creating and supporting communities of caregiving moms and she is a visionary for the disability community world-wide. Jessica's mission to combat the isolation and burnout that these moms and their families face by creating supportive, resourceful and empowering communities and meaningful connections. Her vision is that every family in the disability community is strengthened, equipped, and inspired for their unique journey. This vision has fueled WABT's growth in 6 years into an international community of over 2200 moms, representing all 50 states and 24 countries. Jessica has helped launch dozens of support groups throughout the U.S., New Zealand, and Australia. In order to extend her outreach, Jessica hosts a podcast, "Brave Together with Jessica Patay," which offers a library of inspirational stories and resources for the disability community. To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Robert Freiri has been the Executive Director of Gateway Center of Monterey County since February 2020. Robert has been a nonprofit Executive Director for 25 years including seven years as a Habitat for Humanity Executive Director and a Nonprofit Manager for 35 years. He has also been a Non-Public School Principal. He has been involved in many community boards and committees including the Nonprofit Alliance of Monterey County (NAMC), Monterey Peninsula Chamber of Commerce, Loma Prieta Community Foundation, Loma Prieta School Oversight Committee, and the Role Model Program. Robert was a member of Leadership Monterey County Class of 2022 and Leadership San Benito County Class of 2010. Robert is currently a member of the Monterey Rotary and was the Hollister Rotary Club President in 2014. Robert has also served in other Rotary capacities: Foundation Chair, Community Service Chair, World Service Chair and Scholarship Committee. “The Rotary motto, 'Service Above Self,’ is not just a motto for me, it’s a way of life.” His wife of 34 years, Bridget works for the Loma Prieta School District, daughter Christiana, who has severe Dyslexia and struggled with school until high school is an Assistant Principal in charge of Special Education at a Charter School in Walnut Creek, and his son Nicholas, who has Dyspraxia, was told by a Doctor at the age of eight, not to play sports, not only was he on Championship teams in baseball and football, he does Sports Analytics for the University of California Berkeley Athletics Department. To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Brandi Hurtubise is a full-time caregiver to her daughter Samantha who was born in 2016 with Congenital Cytomeglovirus. As a result Samantha has spastic quad cerebral palsy, epilepsy, hearing loss, cortical vision impairment and microcephaly. She is non-mobile, non-verbal, and receives the majority of her schooling and services in their home in Buffalo, NY. Brandi is also a Mom to Sam's older and neurotypical brother MJ.  Congenital Cytomeglovirus (CMV) is the most common viral infection infants in the US are born with and unfortunately there is very little awareness despite how devastating outcomes can be. CMV during pregnancy can be avoided by not sharing food and drinks with toddlers, avoiding kissing toddlers on the mouth, and washing your hands after every diaper change.  Prior to Sam's birth in 2016, she worked full -time in insurance. She left the workforce after Sam had a G-Tube placed in 2018. Over the last few years, she has worked with the National CMV Foundation; fundraising and raising awareness for CMV.  She also recently started to work with a wonderful group of individuals in Western NY to open up a non-profit organization that provides adapted bikes to individuals with disabilities ( Trendy Trikes / AMBUCS of WNY). To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by True North Disability Planning, to make disability planning accessible to all. To find out more, visit www.truenorthdisabilityplanning.com.

Eric Jorgensen is the Founder of True North Disability Planning, a national consulting company helping families, individuals and professionals navigate the maze of disability benefits, resources, and services. He has been helping his clients find answers since his retirement from the Navy in 2012. He was widowed the same year he retired. At the time, his 12 y/o autistic son, William, was completely dependent on his wife for everything. His frustration with the difficulty of figuring out what to do and navigating services for his son led him to start Special Needs Navigator. Eric created a new category, Disability Planning. He specializes in helping clients identify what they do not know and providing clarity by connecting the dots. He works with people and companies around the country, developing individualized solutions best suited to their circumstances. In addition to working with clients one on one; True North Disability Planning has a Substack (Waypoints), YouTube channel, and Podcast (ABCs of Disability Planning). Eric uses Waypoints as a way to share his thoughts as a parent and a professional. The podcast and YouTube channel focus on benefits, resources, and services people may not know of or want to learn more about, or Eric thinks he can give additional perspective. You can follow Eric on social media at: Facebook: @SpecialNeedsNavigator Twitter: @NeedsNavigator YouTube: Special Needs Navigator Podcast: “ABC’s of Disability Planning” To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by Meerkat Village. It takes a village to raise a child with special needs. Find out more at www.meerkatvillage.com.

Eric is a proud father to five daughters one of which has profound special needs. He is multi-passionate and involved in IV Vitamin infusions in Las Vegas while building a network marketing business in the health and well-being space. He is also the host of the “I Am Awesome” podcast. He finds joy in physical fitness, nutrition, outdoor activities, sports, biohacking, and getting to the root cause of disease. A follower of Christ, his faith underpins his purpose and he aspires to be a speaker and author.  Eric and his beautiful bride, Michelle, will be celebrating their 27th year of marriage in the winter of 2023. Their story is a testament to enduring love and resilience. To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by Meerkat Village. It takes a village to raise a child with special needs. Find out more at www.meerkatvillage.com

Lyn is the wife to Brett (psychologist at Pine Rest), mom to Adelyn (and Stephen) and Kylee, and Nana to Sammy. She received her bachelor's degree in Elementary Education from Calvin University and her Master's (and 3/4 of an Education Specialist) degree from Michigan State University, but is a loyal "Go Blue" University of Michigan fan. She currently serves as the Director of Family Ministries and Grand Haven's Covenant Life Church and as the Executive Director of Noorthoek Academy. Kylee has allowed her to experience God's grace and unconditional love in dynamic ways. Kylee was diagnosed with cerebellar hypoplasia at 3 1/2 years and May Thurner Condition (bleeding disorder) while in high school. To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by Meerkat Village. It takes a village to raise a child with special needs. Find out more at www.meerkatvillage.com

Kelli Stuart is a wife, mother of five, actress and filmmaker, an award-winning novelist and, most recently, a breast cancer survivor. Kelli and her husband, Lee, were thrust into their roles as caregivers when they adopted their youngest son, Sawyer, from China in 2018. Sawyer is a complex little boy with a laundry list of special needs. He also possesses the most magical smile this side of heaven. Kelli juggles the many needs under her roof alongside her own deep-rooted desire to create and craft stories. She doesn't always juggle well, but she does the best she can. You can find Kelli chronicling the daily ups and downs of life on her Instagram feed @kellistuartauthor. To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by Meerkat Village. It takes a village to raise a child with special needs. Find out more at www.meerkatvillage.com

Dr. Crystal G. Morrison is a highly regarded executive advisor, strategist, leader, scientist, and tech entrepreneur.  While progressing in her career as a scientist, Dr. Morrison was also growing her family.  She has three amazing teenagers.  One of her children is autistic and has additional mental health diagnoses and two of her children were adopted and experienced extreme poverty and trauma early in their lives.  As a mom, she’s spent almost 20 years navigating the complex system of care and advocating for her children.  It’s been frustrating and overwhelming, and millions of parents and caregivers face the same feelings and challenges daily.  Her experience inspired her to co-found and lead Meerkat Village, a software company dedicated to improving outcomes for children with special needs by building collaboration and communication among adults providing care.   On her journey, she’s met countless people working at the intersection of community, education, health care and mental health.  She created the Village Vision podcast to celebrate their stories and ignite action.    To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to info@thelucasproject.org. We'd love to hear what you think, so please rate and review! This episode is sponsored by www.CapeAble.com. Weighted blankets. Weighted Wearables and Sensory Products. Use code CARE15 at checkout to try out one of these amazing products at 15% off.

Michelle Crawford is a single mom of two children living in Oklahoma. Her daughter was vaccine injured at four months old and now has seizures and significant developmental delays. In 2021 her world turned upside down when her estranged husband unexpectedly announced that he had shut down the business leaving her unemployed and with no where to turn for help. Since then, she has struggled to support her family while also being a full time caregiver to her 24 year old daughter. She says that she has been living in survival mode for the past two years struggling with feelings of loneliness and feeling trapped due to the lack of support she receives. Her dream is to one day create a funded home for single moms and their special needs child(ren) to live, build community, and where in-house care is made available through a combination of parent co-ops and quality caregivers. To stay connected with Jess, head to www.jessplusthemess.com.  If you are interested in being a guest please reach out to hello@thelucasproject.org. I'd love to hear what you think, so please rate and review! This episode is sponsored by www.CapeAble.com. Weighted blankets. Weighted Wearables and Sensory Products. Use code CARE15 at checkout to try out one of these amazing products at 15% off.