Coffee With Caregivers
By Jessica E Ronne
Kari Baker: A Mom's Mission to Build K.I.N.D. Families
Navigating Special Needs Parenting: An Inspiring Journey with Russ Ewell
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:
Deep SpiritualityRuss's book: He's Not Who You Think He Is
Peg Kerswell: Raw Vulnerability in the Middle of Chaos, Addiction, and Severe Special Needs
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.
Alice Foran: Trailblazing for her daughter and the community for 39 years.
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: A Deep Dive Into Future Planning for Your Adult Child
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: Permission to Advocate for Ourselves as Caregivers & Dealing with Shame from other Families
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: Severe Autism, The Price of Advocacy, and Sharing our Stories
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.
Jess Ronne : A Life Update
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: Spellers, Faith, and Surrender
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: Adoption, Time Saving Tips, and Support
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 Weiss: Lifelong Caregiving, Grieving, and Overcoming Obstacles
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: Special Needs, Community, and Making A Difference
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: Future Options, Pressing Issues, and Never Giving Up on our Children
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: CMV Mama, Divide & Conquer, and Finding Purpose in Caregiving
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: Searching for Hope in a Difficult Reality
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 Alber: Flexible income options, feeling your feelings, and the new normal.
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 VanTol : Parent Caregiver & Advocate for College Inclusive Experiences.
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 - Author, Parent Caregiver, and Cancer Survivor.
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
Crystal Morrison: Using Science to Create Solutions for Disability, Trauma, and Invisible Needs.
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 - solo caregiving, survival mode, and feeling trapped.
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.
Crystal Paine: adoption through foster care, time saving hacks, and family team work.
What a fun, informative episode with Crystal Paine (www.moneysavingmom.com) who is a New York Times bestselling author, a popular speaker, the host of The Crystal Paine Show, and the founder of one of the top personal finance blogs on the web, MoneySavingMom.com. Her desire is to help women across the globe live with more joy in their everyday lives. Her biggest passions are helping women understand how the Gospel can radically transform their lives,
raising awareness for foster care, and finding great deals at the grocery store. She lives with her husband and six kids in the Nashville, Tennessee area.
We chatted about how she unexpectedly found herself as a mom to a child with disabilities when her foster care journey turned into an adoption. She also shared about how this transition was difficult for some of her older children in the beginning but with time, they have become their newest brother's biggest advocate! She also gave overwhelmed caregivers lots of time saving tips from her latest book The Time Saving Mom. To learn more, check out the links below.
Crystal PaineOwner/Blogger | Money Saving Mom, LLCMoneySavingMom.com | CrystalPaine.com | YourBloggingMentor.com
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.
Kristin Pattison - Recovering autism, the staffing crisis and soothing versus self care.
"Nobody's going to fix this but you" I said to myself.
Kristian Pattison is an Arizona Mama who has two wonderful daughters, Alaina and Sasha. Alaina was around 6 months old when Kristin noticed that she was not making eye contact like the other babies were. This eventually led to an autism diagnosis, a long journey to "recover autism" and an eventual peace about the life that Alaina would lead. We also chat about the staffing crisis and how difficult it is to find competent long term care for our children and the concepts of soothing versus self care and which is actually helping us as caregivers. Kristin is also the author of "Bringing You Back" and "Deliver us." I know you're going to love this episode!
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!
Jillian Benfield: In utero diagnosis & changing the way we think about disability.
He said, "You don't have to be a hero... you don't have to save the baby's life."
Jillian Benfield is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as TODAY, Good Morning America, Yahoo! News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, in her community, and as a part of the National Down Syndrome Congress’s National Down Syndrome Advocacy Coalition. Jillian and her husband, Andy, and their three children make their home on Florida’s Space Coast. Learn more atjillianbenfield.com.
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!
Tonya Andrews : sleep deprivation, playing the med game, & why we must address the caregiver crisis.
Tonya Andrews is a mom to 3 boys and her youngest is on the spectrum. She has been married for 12 years and lives in Ankeny Iowa and is the President of an autism non profit called L-Evated Coaching and Learning Services.
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!
Kassandra Lambert - advocate for predictable time off, restorative self care & fundraising for needs
Kassondra Lambert is a parent of a disabled 4 year old. Last year, she started a fundraising journey to fund a wheelchair accessible van. Through that experience, she saw the need to teach families how to fundraise online for medical expenses not covered by insurance. She's the founder of The Striped Stable which teaches copywriting and more to parents so that they can tell their stories in a way that connects with donors and helps them create community.
www.thestripedstable.com
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!
Ron Sandison - Author, Autism, & Advocate.
Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of the Art of Autism and the Els Center of Excellence. Sandison has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom published by Charisma House and Views from the Spectrum. He has memorized over 15,000 Scriptures including 22 complete books of the New Testament. Sandison speaks at over 70 events a year including 20 plus education conferences. Ron and his wife, Kristen, reside in Rochester Hills, MI, with daughter, Makayla. His website is www.spectruminclusion.com. You can contact him at sandison456@hotmail.com.
Link to Ron’s website: www.spectruminclusion.com
Link to Ron’s Facebook fan Page: www.facebook.com/SpectrumRonSandison
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!
Mary Barbera - ABA, Preparing for the Future, & Turning Autism Around
Dr. Mary Barbera “fell” into the autism world in 1999 when her first-born son, Lucas was diagnosed with autism. Since then, Mary transformed from a confused and overwhelmed parent to a Board-Certified Behavior Analyst and best-selling author. After earning a PhD, Mary launched her first online course in early 2015 and later built additional courses and a membership program to help both parents and autism professionals.
Mary’s latest book Turn Autism Around, her online courses, weekly podcast and social media posts help parents and professionals start turning things around for young children with early signs of autism and older children with an autism diagnosis who are still struggling with talking, tantrums, eating, sleeping and potty training.
For more information go to marybarbera.com.
Attend a free workshop to learn more: marybarbera.com/workshop
And on all social media channels:
MaryBarbera.com/Facebook
MaryBarbera.com/Youtube
MaryBarbera.com/Instagram
MaryBarbera.com/TikTok
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please reach out to jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Amy McCoy - autism advocate, children’s book author, & how laughter is the best medicine.
Amy McCoy is an autism parent, children’s author and disability educator. Her debut children’s novel, Little Big Sister, shares the sibling perspective of growing up with a brother who has autism. Amy combines her expertise as a former elementary school teacher with her experience of parenting a child with autism as she visits elementary schools, libraries, bookstores, and parenting groups offering interactive presentations highlighting disability awareness. Amy’s children, Matthew and Kathryn, are the inspiration for her books and her work. Learn more at www.littlebigsisterbook.com.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please reach out at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Melanie Oates: Single parent, long term respite, and choosing caregiving over a career.
Melanie Oates is a nonprofit founder, speaker, and advocate for parent caregivers like herself. She grew up extremely fascinated with technology and earned a Bachelor's Degree in Computer Science from Bethune-Cookman University. Melanie has shattered the glass ceiling with over 15 years of experience in the tech space, and has broken many barriers at billion dollar companies as a black female in tech.
Despite her accomplishments in the corporate sector, she made the life-changing decision to end her career to focus on her family. While this decision did not come easily, she knew it was best because as an attempted suicide survivor, she knew she could not risk another mental health crisis. From sleepless nights to working on her computer behind the wheel while traveling to appointments, Melanie took the leap of faith in 2020 and has not looked back.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please reach out at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Kate Swenson - Blogger at Finding Cooper’s Voice & Author of Forever Boy
You can purchase Kate's book, Forever Boy on Amazon.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Lindsay San - CEO of The Pampered Parent
Lindsay is the founder and owner of The Pampered Parent, a monthly self-care subscription box and supportive online community for moms of children with special needs. In addition to The Pampered Parent, Lindsay is a Board Certified Behavior Analyst (BCBA). As a BCBA, she works with individuals with a variety of developmental disabilities, as well as with their caregivers and families, to improve communication and social skills, foster independence, and reduce challenging behaviors. In Lindsay's free time, she enjoys exercising, traveling, watching TV with her husband, and playing with her dog, Shockey. To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Fred Marvel - shaken baby syndrome, autism father & seeking answers.
Fred Marvel is 40 years old, has been married close to 16 years and is the father of three boys. He was born and raised in Philadelphia where he works as a paralegal. His oldest son Aleks (11) was diagnosed with Autism, ADHD and sensory processing disorder. Fred started a podcast called the Spectrum Dad Podcast late last year because he wanted to help bring awareness to autism.
Connect with Fred on IG: @thespectrumdadpod
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Katie Miniel: Thinking outside of the box with homeschooling autism, soap making & trying to find happiness in the middle of the struggles.
Katie's goal is to keep advocating through Texas Made Soap until families like hers will be heard and our children/ adults will have the care they need and deserve.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Kim Albrecht: planning for the future & helping our children learn to live without us.
She hosts the award winning LOMAH Disability Podcast, where over 100 expert guests have been interviewed on topics relevant to planning the future for teens and young adults with disabilities. The show deep dives into a single issue for 12 episodes and has covered disability housing, transitioning from school to adult services, financial planning, safety, technology, health, and more.
When not in the trenches of parenting, you can find her hunting sea glass, hiking a trail, or on instagram as journey2lomah.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Angela Lofton: In utero diagnosis, the importance of real life community & why self care includes learning to say yes to help.
"Sometimes good enough is good enough"
Angela Lofton has over thirty years experience helping others find the best in themselves. From her days in college tutoring students with disabilities, corporate training and educating young people, she has always sought to help others discover the gifts and talents within themselves. She believes in lifelong learning and that through observations, engaging our senses and by being open to new experiences and people, we build social connections that support each of us to learn, grow and support one another. It is this passion that has driven her to create the & friends online community, https://andfriendscommunity.com/, where you will find freedom from isolation, coaching strategies, encouragement, social outreach and strategy workshops.
These ideals also come together with vivid characters in her delightful children’s book, Constance the Cowlet. Inspired by the illustrations of her youngest son, Andrew, Angela’s passion for children’s literature, reading aloud, and working with children culminated in their first book. Andrew was born with a debilitating birth defect and has undergone 15 surgeries. Early on, artwork was a way help him reach out and share a part of himself with peers, doctors and others. His sketches are a window into his intelligence and sensitivity that wasn’t always obvious by first impressions. Read more about the book at https://constancethecowlet.com/.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Michele Thorne: Siblings on the spectrum, ABA, and permission to say you don't have to do it all.
Before founding D.A.M.E.S and Care 4 the Caregivers Michele worked as a geneticist at TGen and has an undergraduate degree in Molecular Biosciences and Biotechnology and a Master of Science Degree from Arizona State University. She also worked as an adjunct professor, re-wrote biological manuals for ASU, published in peer-reviewed journal articles, and is the author of a STEM picture book series.
She is a Certified Autism Specialist and a graduate of the Pilot Parents of Southern Arizona Partners in the Leadership program. She has been trained as a Flourishing Families Practitioner, a Protective Factors Trainer, and a Triple P Stepping Stones Practitioner. Michele also sits on the ALTCS Advisory Council as a parent representative and the ICC Financial Committee.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Katie Emde - Raising Siblings on the Spectrum, Canada vs the U.S. for Resources, and a No Nonsense Approach to Advocacy.
Lisa Dempsey - Group home placement, non profit work, & finding time to advocate for your child.
Lisa Dempsey is the founder and CEO of the Forgotten Wishes Foundation, whose mission is to inspire a sense of belonging and be a source of joy for people with disabilities. Lisa belongs to a society of women who share the delights and dilemmas of raising children and caring for adults with special needs. She is a creator, explorer, and advocate and writes a blog about her experiences called Cluck Howl Crow. Lisa is happiest when she and her husband, Robert, are gathered around the kitchen table with their family. To refuel her mind and body, Lisa travels in her trailer named Rosemary von Wunder, takes walks on the beach searching for shells, or heads to New York City to binge-watch Broadway Musicals in person and eat Junior's Cheesecake. Lisa and her husband Robert have been married for 18 years and have four children. They live in Houston, Texas, with their teenage son and two Cardigan Welsh Corgis, Zeus and Mick. They are Momsie and Popsicle to their two granddaughters. Lisa is grateful to have a circle of extraordinary moms christened "special friends" whose presence adds a copious treasure to her life.
Head to www.forgottenwishes.org to see how you can help with Lisa's mission to help those with disabilities.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
"Doc" Hunsley - A terminal diagnosis, the death of a child, & new beginnings.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org. I'd love to hear what you think, so please rate and review!
Liza Blas - Radical Self Care Guru.
Join me as I chat with Liza Blas, a storyteller and the host of the Very Happy Stories podcast. She brings hope, empowerment, and validation to parents raising kids with unique challenges. Liza delivers inspiring stories and shares her best practices through her podcast, speaking engagements, and personal transformational coaching. Her stories are inspired by her personal experience navigating the complex conditions of her two children, including depression, anxiety, ADHD, OCD, ASD, Tourette’s Syndrome, and Lyme disease.
We chat about what it means to practice radical self-care, how to flip your mindset to one of empowerment and the benefits of rituals and mushrooms. You'll love to learn practical tips on how to care for yourself while caring for your child.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org I'd love to hear what you think, so please rate and review!
Lisa Candara - Sanity Management, Labels, and Cycles of Grief and Joy.
Join me as I chat with Lisa Candera, a single mother to a teenage son with Autism, OCD and DMDD, a lawyer, and certified life coach for moms raising kids with autism.
Lisa teaches moms raising kids with Autism how to keep their cool while their child is melting down. To learn more about Lisa's coaching program and get on her email list for some upcoming FREE resources, visit her website at www.bethesolidobject.com.
You can also follow Lisa on Instagram @theautismmomcoach.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org I'd love to hear what you think, so please rate and review!
Misty Phillip - Author, Speaker, Podcaster, & Special Needs Mama
Misty Phillip is a dreamer and a doer passionate about helping spark your soul message. She encourages people to use their story to give God glory. The Founder of Spark Media, Misty equips Christian Communicators and podcasters through virtual and live events, podcast network, magazine, and a thriving membership community. She is the host of the By His Grace Podcast ranked in the top 1.5 percent of all podcasts. Sought-after inspirational speaker and the author of the award-winning #1 Amazon New Release Bible Study, The Struggle is Real: But so is God, and the Spark Podcast Planner.
Website: MistyPhillip.com and SparkMedia.Ventures
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org I'd love to hear what you think, so please rate and review!
Me, Myself & I - An update on life
Brittany Vance - Brand Ambassador & Autism Awareness
Jessica Patay: Prader-Willi Syndrome, Non Profit Work, & Being Honest About the Future.
Jessica Patay is a mother, wife, and advocate/cheerleader for Special Needs Mothers. She has been married to her husband, Chris, for 23 years and they reside in the Palos Verdes area in Southern California. They have two sons and a daughter, all teenagers. Their second son, age 17, was born with a rare, medically complex genetic disorder, called Prader-Willi syndrome.
Because Jessica is passionate about serving, mentoring, and inspiring other Special Needs Moms, she launched and leads a non-profit organization called We Are Brave Together. WABT provides resources, respite, support groups, mentoring and inspiration for moms caring for children or adult children, any age, with any diagnosis, disability or challenge. She believes in the power of gathering to empower, strengthen and uplift moms in their unique, diverse and difficult journeys. WABT offers support groups, workshops, retreats and inspirational events. You can find out more at wearebravetogether.com and see their resourceful and inspirational posts on Instagram @wearebravetogether.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org I'd love to hear what you think, so please rate and review!
Lisa Peña - Demanding accountability in our classrooms by building radical empathy.
Lauren Lowery : Rancher, Aicardi-Goutieres, & Coach
Lauren and her husband live in Stillwater, Oklahoma with their 5 year old son Leo and 4 year old foster daughter. They run a cattle operation, and she serves as a life coach for special needs moms. Their son Leo has a rare genetic disorder called Aicardi-goutieres syndrome, which affects the brain, spinal cord, and immune system.
To learn more about Lauren's coaching, find her at www.lowerylifecoaching.com.
To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org I'd love to hear what you think, so please rate and review!
Stephanie Simoes: PANS, Clean Food, & Wine Consultant
Stephanie Simoes is a wife & mother to four beautiful children from Pennsylvania and enjoys being a Cause Entrepreneur with ONEHOPE. She hosts private wine events to raise awareness and donations for different causes. Supporting medical research and support for special needs families is really important to her because she has three children who have been diagnosed with PANS. She is extremely passionate about raising awareness and believes that if her journey with PANDAS/PANS can help even just one other family, it is worth it. To learn more about One Hope Wine check out - Onehopewine.com/myshop/winewsteph To support The Lucas Project with a purchase head to - onehopewine.com/event/97722 To stay connected with Jess, head to www.jessplusthemess.com. If you are interested in being a guest please contact me at jess@thelucasproject.org I'd love to hear what you think, so please rate and review!
Amy Brown: Adoption, RAD, & Fetal Alcohol Syndrome
Amy J. Brown is a wife,mom,writer, mentor and podcast host. She writes to encourage special needs moms. She shares honestly about her adoption story and parenting a child with Reactive Attachment Disorder (RAD) and Fetal Alcohol Spectrum Disorder (FASD).Amy mentors moms and believes that when we honestly share our stories we learn from each other, gather strength,and come away encouraged. But most importantly, we feel less alone.She lives in Michigan and is married to her high school sweetheart. She is the mother of six kids, who are all in different phases of life—from adults to middle schoolers. She loves quiet mornings, strong English breakfast tea, and a good book.
You can connect with Amy and read more of her writing at:https://www.amyjbrown.com/
Or follow her on Instagram:https://www.instagram.com/amyjbrown_writer/
To purchase my book Sunlight Burning at Midnight amzn.to/37oRyop To stay connected with Jess head to www.jessplusthemess.com. I'd love to hear what you think, so please rate and review! If you are interested in being a guest please contact me at jess@thelucasproject.org
Laurie Hellmann - Author, Dating after Divorce, & Desperate for Respite
"Let go and let God."
For years, Laurie Hellmann has fiercely navigated therapies, medications and countless medical and personal challenges with her 17-year-old, autistic son, Skyler. While continuing to fight for her son’s ongoing needs, she has become the voice for other families with a loved one on the autism spectrum. From sharing insights on how autism impacts an entire family – its influence on a marriage, neurotypical siblings, and life as a whole – Laurie invites others into her whirlwind life with the hopes of raising awareness about a cause near and dear to her heart. She is the author of Welcome to My Life: A Personal Parenting Journey Through Autism and also host of the podcast Living the Sky Life – Our Autism Journey both of which empower individuals faced with an autism diagnosis as well as those who are open to learning more with insights, tools and resources to do so. Learn more about Laurie Hellmann by visiting www.lauriehellmann.com.
To purchase my book Sunlight Burning at Midnight https://amzn.to/37oRyop To stay connected with Jess head to www.jessplusthemess.com. I'd love to hear what you think, so please rate and review! If you are interested in being a guest please contact me at jess@thelucasproject.org