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Coffee With Caregivers

Coffee With Caregivers

By Jessica E Ronne

Join Jess Ronne, author, speaker, and caregiver advocate as she chats with caregivers about the joys and trials of raising a child with complex needs. Jess is also the founder & executive director of The Lucas Project, a non-profit which provides recognition, resources, & respite for special needs families & associate director of the Unseen film. She & her husband Ryan live in Michigan with their 8 children, including their disabled son Lucas. Her story of beauty from ashes is detailed in her three books. To follow the ongoing saga she can be found at www.jessplusthemess.com
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Amy Brown: Adoption, RAD, & Fetal Alcohol Syndrome

Coffee With Caregivers Apr 15, 2021

00:00
42:07
Jessica Patay: Special Needs, Community, and Making A Difference

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.


Feb 24, 202442:31
Robert Freiri: Future Options, Pressing Issues, and Never Giving Up on our Children

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.


Jan 27, 202438:07
Brandi Hurtubise: CMV Mama, Divide & Conquer, and Finding Purpose in Caregiving

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.

Dec 09, 202334:14
Eric Jorgensen: Searching for Hope in a Difficult Reality

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.

Nov 18, 202340:13
Eric Alber: Flexible income options, feeling your feelings, and the new normal.

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

Nov 04, 202347:28
Lyn VanTol : Parent Caregiver & Advocate for College Inclusive Experiences.

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

Oct 21, 202348:30
Kelli Stuart - Author, Parent Caregiver, and Cancer Survivor.
Oct 07, 202345:22
Crystal Morrison: Using Science to Create Solutions for Disability, Trauma, and Invisible Needs.

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.

Sep 23, 202333:36
Michelle Crawford - solo caregiving, survival mode, and feeling trapped.

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.


Sep 09, 202337:04
Crystal Paine: adoption through foster care, time saving hacks, and family team work.

Crystal Paine: adoption through foster care, time saving hacks, and family team work.

"how good it is when I can stop clinging to the illusion of control and just living and being present in today."
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.
Jun 17, 202346:14
Kristin Pattison - Recovering autism, the staffing crisis and soothing versus self care.

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!

May 17, 202345:59
Jillian Benfield: In utero diagnosis & changing the way we think about disability.
Apr 15, 202339:51
Tonya Andrews : sleep deprivation, playing the med game, & why we must address the caregiver crisis.
Mar 11, 202347:36
Kassandra Lambert - advocate for predictable time off, restorative self care & fundraising for needs

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!

Jan 16, 202334:22
Ron Sandison - Author, Autism, & Advocate.
Dec 15, 202239:08
Mary Barbera - ABA, Preparing for the Future, & Turning Autism Around
Nov 15, 202245:21
Amy McCoy - autism advocate, children’s book author, & how laughter is the best medicine.
Oct 15, 202236:33
Melanie Oates: Single parent, long term respite, and choosing caregiving over a career.

Melanie Oates: Single parent, long term respite, and choosing caregiving over a career.

“I was moving up the corporate ladder and making an impact as a black female in tech. I am transparent with my employers and they know that I am a caregiver. It’s a double-edged sword because although they know I’m a caregiver, employers do not fully understand the magnitude of what that comes with. I became a single mother as well shortly after learning about my twin's diagnosis. Although I had many accolades in my career, I was at a fork in the road. My last job tried its best to support me as a caregiver, but after almost losing my home from taking unpaid FMLA twice, exhausting all of my savings while paying for deductibles for my daughter's care and losing our in-home nursing care, I put my pride aside and left my 6-figure IT job”
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!
Sep 16, 202235:51
Kate Swenson - Blogger at Finding Cooper’s Voice & Author of Forever Boy
Apr 15, 202232:59
Lindsay San - CEO of The Pampered Parent

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!

Apr 01, 202214:53
Fred Marvel - shaken baby syndrome, autism father & seeking answers.

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!

Mar 18, 202235:31
Katie Miniel: Thinking outside of the box with homeschooling autism, soap making & trying to find happiness in the middle of the struggles.
Mar 04, 202238:03
Kim Albrecht: planning for the future & helping our children learn to live without us.
Feb 11, 202258:58
Angela Lofton: In utero diagnosis, the importance of real life community & why self care includes learning to say yes to help.

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!


Jan 28, 202254:28
Michele Thorne: Siblings on the spectrum, ABA, and permission to say you don't have to do it all.
Jan 14, 202258:08
Katie Emde - Raising Siblings on the Spectrum, Canada vs the U.S. for Resources, and a No Nonsense Approach to Advocacy.

Katie Emde - Raising Siblings on the Spectrum, Canada vs the U.S. for Resources, and a No Nonsense Approach to Advocacy.

"You shouldn't have to uproot your entire family because there isn't enough." Katie Emde.  What a great chat with Katie Emde.  Katie lives in Saskatchewan with her husband and three beautiful kids and spends her days advocating for those on the autism spectrum. Her oldest son Avery was diagnosed with severe non-verbal autism and her youngest son Jackson was recently diagnosed on the spectrum. When getting Avery diagnosed, she found everything to be extremely overwhelming & difficult to navigate and started advocating provincially for hundreds of families. She blogs online on Facebook & shares her family's journey at " A Journey For Avery." 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!
Dec 17, 202101:06:50
Lisa Dempsey - Group home placement, non profit work, & finding time to advocate for your child.

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!

Nov 26, 202101:05:14
"Doc" Hunsley - A terminal diagnosis, the death of a child, & new beginnings.
Nov 05, 202153:22
Liza Blas - Radical Self Care Guru.

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!

Oct 22, 202146:46
Lisa Candara - Sanity Management, Labels, and Cycles of Grief and Joy.
Oct 08, 202145:34
Misty Phillip - Author, Speaker, Podcaster, & Special Needs Mama
Sep 24, 202141:54
Me, Myself & I - An update on life

Me, Myself & I - An update on life

Host, advocate & author Jess Ronne gives an update since the move from TN to MI on her personal life as a mom to 8 and parent caregiver to Lucas, her 17 year old son with profound disabilities. It’s been quite the journey over the past 10 years as she has moved 5 times in search of resources for him and her family. Have they found what they need? Tune in to find out.
Sep 10, 202121:14
Brittany Vance - Brand Ambassador & Autism Awareness

Brittany Vance - Brand Ambassador & Autism Awareness

Brittany Vance is a music journalist and both of her boys have special needs. Her youngest son Amari is a IG influencer and they work with national and local brands to help them become more Autism friendly. @lifeofamari2 She’s originally from Appalachia & believes that acceptance is the magic touch.
Jun 25, 202136:39
Jessica Patay: Prader-Willi Syndrome, Non Profit Work, & Being Honest About the Future.
Jun 11, 202148:18
Lisa Peña - Demanding accountability in our classrooms by building radical empathy.

Lisa Peña - Demanding accountability in our classrooms by building radical empathy.

Dr. Lisa Peña is a coach’s wife and busy mom of three, including a daughter who has a unique subset of autism. Dr. Peña is from the Rio Grande Valley where she has served our country’s veterans as a clinical pharmacist for over ten years. She is a powerful public speaker and shows a particular passion in building radical empathy within the public school system. Dr. Peña is the co-founder of the nonprofit Labeled & Loved where she serves as Vice-President. She is an author and blogger and believes that impactful storytelling has the potential to change the world. If Dr. Peña is not sitting at her desk in her barn house dreaming of ways to better serve her community, you can find her on a football field or arm in arm with the guy she has loved since she was fifteen. www.drlisapena.com www.labeledandloved.org
May 28, 202151:45
Lauren Lowery : Rancher, Aicardi-Goutieres, & Coach
May 14, 202133:25
Stephanie Simoes: PANS, Clean Food, & Wine Consultant

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! 

Apr 30, 202141:08
Amy Brown: Adoption, RAD, & Fetal Alcohol Syndrome
Apr 15, 202142:07
Laurie Hellmann - Author, Dating after Divorce, & Desperate for Respite

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

Apr 02, 202140:56
Kelli TenHaken: International Adoption, Being Proactive About Finding Care, & Releasing Guilt

Kelli TenHaken: International Adoption, Being Proactive About Finding Care, & Releasing Guilt

“We have to figure out how to thrive and not just survive.” Kelli

Kelli and her husband Mark have four kids-- Ruby, 12, Charlie, 11, Tabatha, 9 and Mona, 6. Through various circumstances, God placed adoption on their hearts and they chose to adopt their first child. They didn't know about Ruby’s special needs at the time, so the first couple of years with Ruby was quite a journey! Ruby has massive brain scarring on her brain, probably from a rough birth. Because of that brain damage, she has a cerebral palsy and a seizure disorder diagnoses. Cognitively, she functions like a 3-4 month old. She has trouble with head control, she isn't able to sit or roll over and is tube fed. She loves music and can often be found listening to Raffi on Pandora radio. She also enjoys swimming, being tickled, going on walks and listening to the chaotic noise of her siblings. This definitely wasn’t the life Kelli had expected, but she has a lot of peace and joy. It takes a village and she is thankful for those who have supported them along the way.
Mar 19, 202134:50
Carly Laabs - Attainable Self Care for the Weary Caregiver
Mar 05, 202152:07
Sarah Blunkosky - Yogi, Learning Advocate, & Homeschooling Mom

Sarah Blunkosky - Yogi, Learning Advocate, & Homeschooling Mom

"Pity is the worst feeling for me as a caregiver." 

Jess chats with Sarah Blunkosky, M.A., an integrative education consultant, certified peer-breastfeeding counselor, and registered Accessible yoga instructor specializing in family, children’s, special-needs, and prenatal/postpartum movement/embodiment. Her learning life spanned teaching high school social studies at Open High School in Richmond, Virginia to studying slavery and social history on a graduate school path that pivoted when her eldest daughter's intellectual disabilities and medical needs required an intensive lifestyle shift.  She started Learning Heroine LLC in 2015. You can find her on Instagram and Facebook sharing her dharma/mission: Set learning free.  When she isn’t homeschooling her kids or teaching yoga, you can find her writing articles and working on a book.  A forever student of yoga, she is also studying to become a certified yoga therapist.  Then one day, she hopes to open a group home for her eldest daughter to live in. Website: http://learningheroine.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

Feb 19, 202141:42
Rachel Kang - Creator, Sibling Caregiver, & Truth Teller.

Rachel Kang - Creator, Sibling Caregiver, & Truth Teller.

"I held on to that word "normal" and waited for it to happen." 

Jess sits down to chat with her friend Rachel Kang, a New York native, born and raised just outside of New York City. Rachel is a mixed woman of African American, Native American, Dutch, and Irish descent, she writes prose, poems, and other pieces that whisper into the thin tension between faith and life. She is a graduate of Nyack College in New York where she obtained a degree in English with Creative Writing, and she is the creator of Indelible Ink Writers. Jess and Rachel talk about how a vaccine injury led to Rachel's brother's profound special needs, how the experience as a sibling caregiver has shaped Rachel's life, and the impact of the KETO diet on her brother's symptoms.  To continue to connect with Rachel, find her at www.rachelmariekang.com and follow her on Twitter & Instagram @rachelmariekang.   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

Feb 05, 202140:29
Annie Morgan - Angelman Syndrome & Showing up for Yourself.

Annie Morgan - Angelman Syndrome & Showing up for Yourself.

"You matter just as much as your child." 

Jess chats with Annie, aka “blessedforthismess” a mom to two kids, Ava & Brody. Her daughter Ava was diagnosed with Angelman syndrome in 2014 which led to Annie’s belief that we need to teach our kids that they are undefined by their circumstances.  Annie is also passionate about advocating for the advocators & sharing the depths of her heart through her own journey as a mother to a child with a disability. Her motto is that “you are more than the circumstances that surround you.” To learn more, find Annie at www.blessedforthismess.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

Jan 22, 202139:37
Noelle Walker : Adoption, Cerebral Palsy, Cancer & Covid
Jan 08, 202133:45
Jolene Philo : Caring For a Father and a Son
Dec 11, 202038:60
Carrie Prater : Advocating for Dignity

Carrie Prater : Advocating for Dignity

“Everyone deserves to use the restroom with dignity.”   

Carrie In this episode, Jess chats with Carrie Prater, a mother of 4 children ages 12 to 25 years old and special needs advocate. Her son Gibson was born with Mowat-Wilson syndrome with a secondary diagnosis of Autism.  This syndrome includes impairments ranging from mild to severe with Gibson falling in the moderate to severe range. Jess and Carrie talk about how important community is for the caregiver, some of the more challenging behaviors they’ve both experienced with their sons and Carrie’s groundbreaking initiative throughout superstores in the Midwest. 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

Nov 27, 202054:06
Becky Davidson: Founder of Rising Above Ministries; A Safe Haven for Special Needs Families
Nov 13, 202038:06
Shannon Guerra: RAD - Reactive Attachment Disorder in Adopted Children

Shannon Guerra: RAD - Reactive Attachment Disorder in Adopted Children

"It is important for a child to have lots of healthy relationships with adults but a child with [attachment issues] they need to get the relationship with their primary caregivers down first.”  

In this episode of Coffee with Caregivers, Jess sits down with author Shannon Guerra, an Alaskan, homeschooling mama of 8 kids via birth and adoption. She is the author of  Upside Down: Understanding and Supporting Attachment in Adoptive Families, Oh My Soul: Encountering God in Unconventional, Honest (and Sometimes Messy) Prayer, and the Work That God Sees series. Jess and Shannon discuss what attachment disorder looks like in children and how it often presents in adoption. They also discuss how important it is for people to understand that the attachment must occur with the primary caregivers before all other attachments. This was a raw, vulnerable conversation as both mamas shared their experiences with adoption and how the church needs to step it up and see adoption and foster care as mission fields right in their own backyards. To learn more about Shannon and her story visit copperlightwood.com.  

#RAD #attachmentdisorder #adoption #specialneeds 

To purchase my book Sunlight Burning at Midnight https://amzn.to/37oRyop To stay connected with me, 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

Oct 23, 202057:05
Callie Daruk: Extreme medical needs after birth

Callie Daruk: Extreme medical needs after birth

“I would feel like my son represented the pain.” Callie
“I’m supposed to love you and nurture you but right now when I am elbow deep in diarrhea, I am full of rage.” Callie
“Praise Jesus my baby lived so I’m not allowed to speak about the difficulties.” Jess
“Moms need to speak the truth so that we can see change.” Jess
“Somehow in my mind I was supposed to muscle through this.” Callie
“ I wish I would have raised my hand and said, I need help.” Callie
“You are just in a state of existence.” Callie
[I thought] “Yes, I’m glad he’s home, but I’m also terrified that he’s home.” Callie
“I had three different doctors diagnose me with PTSD in those days.” Callie.
In this episode of Coffee with Caregivers, Jess sits down with her friend Callie Daruk, an award-winning author and speaker. She is also a hands-on mother of three spirited boys. After nearly a year-long stay in the NICU with one of her twins who was diagnosed with necrotizing enterocolitis, her rose-colored glasses shattered. Her new book, What Does God Want You to do Before You Die, details her traumatic but hopeful story. She also serves as the Chapter President of Word Weavers Int., and her writing has appeared in Guideposts, The Upper Room, Focus on the Family, Kids Clubhouse, Charisma, Just 18 Summers and Nashville Christian Voice magazines.
Jess and Callie go deep in this conversation, discussing symptoms of PTSD that they each experienced after the birth of their children, the “miracle baby” syndrome, and how desperately they needed help during the earliest days as special needs moms.
Oct 09, 202036:52