We Saved You a Seat

As we honor and celebrate Deaf-Blind Awareness Month, I'm excited for people to hear from Lisa Lawter with the Oklahoma Deaf-Blind Technical Assistance Program.    Lisa is passionate about helping and serving families who have children with unique medical needs, and this is a resource we want to celebrate and share.   https://www.ou.edu/education/centers-and-partnerships/deaf-blind-project   Lisa Lawter, Ph.D. Project Director  Oklahoma Deaf-Blind TA Project  University of Oklahoma  Department of Educational Psychology  820 Van Vleet Oval, Room 321  Norman, OK  73019  405.325.0441  405.325.6655 fax  Friend us on Facebook at Oklahoma Deaf Blind Technical Assistance Project   

Lora Roberts, Eastern Regional Coordinator for Oklahoma Family Network, helps us understand Sibshops for brothers and sisters who have a sibling with special needs. She shares more about her Tulsa Sibshops experience and what families can expect when they bring their child.

Understanding healthy boundaries in our relationships is essential to taking care of ourselves. Join us for a class as we work through misconceptions and proven strategies that help you set healthy boundaries for yourself to help in all of your relationships.   If you'd like to watch the training and view Lauren's slides, please joining us on our YouTube Channel: https://youtu.be/xuz2yg8P8S0

Celebrating Rare Disease Day with double the podcast release today! As we continue to celebrate and honor the day set aside to bring awareness to our incredible families with a rare diagnosis, I want to thank Sky Collins for sharing in our previous release about Oklahoma Rare.  She continues on to share more about the personal diagnostic journey their family experienced as they tried to advocate and find answers for their youngest daughter, Presley. We also thank Presley for allowing her mom to share pieces of her diagnostic journey.  And anyone interested can purchase Presley's book here: https://www.makebelievebookcompany.com/product-page/better-than-a-letter-magical-mailing-kit   #OklahomaRare #MalanSyndrome  #OKRare  #RareDiseaseAwareness  #UltraRareDisease  #EveryLifeFoundation  #PartnersInPolicy  #SB207  #SenatorCarriHicks #RareDiseaseDay #RareDiagnosis  

Every year, on the last day of February, the world comes together to recognize Rare Disease Day—a global initiative dedicated to raising awareness for rare diseases and the millions of people affected by them.   Today, We Saved You A Seat is incredibly honored to share a few things Oklahoma is doing to help bring awareness, advocacy, conversation and support to and for those impacted by a rare diagnosis.   Today, Sky Collins is here to discuss the incredible community group, Oklahoma Rare, of which she is a co-founder and shares ways you can get involved.     Addition Resources Mentioned: https://everylifefoundation.org/rare-advocates/virtual-youth-hill-day/   #OklahomaRare #MalanSyndrome  #OKRare  #RareDiseaseAwareness  #UltraRareDisease  #EveryLifeFoundation  #PartnersInPolicy  #SB207  #SenatorCarriHicks #RareDiseaseDay #RareDiagnosis

In this presentation, we will discuss how to set goals for positive change for all ages while still having a self-compassion focus. This can help us break the pattern of shame about things we want to change and instead apply simple but profound principles for effective growth. If you would like the presentation handouts please email: erin-parks@oklahomafamilynetwork.org

Sometimes we are so focused on behavior that we don't realize how powerful purposeful relationships can be in responding to negative behavior and preventing things from ever happening. We will look at the work of Dr. Lori Desautels and her book Connections over Compliance to learn brain-based strategies for connecting with kids and responding to and preventing frustrating behaviors.

Welcome to National Wear Red Day 2025!   After finally getting a diagnosis of Postpartum Cardiomyopathy, Chrissy learns what her future looks like and shares with us how she processed this unexpected diagnosis and what she did to survive as a mom who needed lots of help from doctors, family, and friends.   To learn more from the American Heart Association about Postpartum Cardiomyopathy (or Peripartum Cardiomyopathy) visit the American Heart Association's website.

On December 11th, 2024 Chrissy Cleary proudly announced, "awww my Heart Failure is 18 - an adult."    Chrissy Cleary is mom to three children, and after she delivered her 3rd baby, she developed some scary symptoms that some medical professionals identified as "normal" and/or wrote off as anxiety.   In this episode of We Saved You A Seat, Chrissy describes truly easy and wonderful pregnancies, her dreams of motherhood, and having a large family. Her dreams were interrupted soon after the birth of her third child.   Thank you, Chrissy, for sharing your story of strength with us and allowing us to honor you this February and bring awareness and conversation to Heart Health during and after pregnancy.

Being a parent or a caregiver can be exhausting. We can become so overwhelmed by the never-ending list of things to do that we lose sight of taking care of ourselves and can experience burnout. Together we will complete a survey of how we are doing with self-care and build a practical plan to help us take better care of ourselves so we can also take care of the important people in our lives and avoid burnout.    Although this session was recorded in December, it is full of great information reminding us compassion fatigue is very real and takes a toll on those who are caregivers.

Presentation Power Point

Happy World Down Syndrome Day (3/21)!!   World Down Syndrome Day (WDSD), March 21st, is a global awareness day officially observed by the United Nations since 2012.  This day encourages conversation and education to help end the stereotypes and encourage inclusion.   Today, Carter's Mom and Sister highlight some of the amazing resources and advocacy they have been involved in as they support Carter and others with Down Syndrome!          

Tomorrow is World Down Syndrome Day, and TODAY we want you to meet Carter and his family in our first release of our two-part series highlighting and celebrating those with Down Syndrome.   Today's conversation walks you through some of the emotional moments tied to learning Carter would have Down Syndrome, as well as, his delivery, NICU stay, his first surgery, and some thoughts from his sibling, Cassie.   Carter has his very own TikTok channel: https://www.tiktok.com/@carters_kitchen18   Part two of our conversation with Charity and Cassie will be released tomorrow as we celebrate World Down Syndrome Day!    #WorldDownSyndromeDay #CrazySocks #DownSyndromeAssociation #DSACO 

Oklahoma Family Network is thankful to have you join us today for the final release in this series and conversation with Charles, to help us celebrate what makes Charles III unique as we celebrate Rare Day today!!!   You will hear Charles brag on his daughter Zion and speak to the sibling relationship that Zion has with her little brother, Charles III. He also discussed tips he has for those in the community on engaging him and Charles III in conversation when you see them out and about.  And last, but certainly not least, we wrap up our great conversation with Charles putting the disability label away and tells us about his incredible son and his big personality!   Charles has big goals and dreams; and wants others to know about SibShops through SoonerSuccess.   Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.   With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.   Rare disease statistics to share with others: While each disease may be rare, collectively, they impact a large number of people. 300 million people worldwide live with a rare disease. There are over 6000 different rare diseases. 72% of rare diseases are genetic. 70% of these rare genetic diseases begin in childhood.   #CdLS #ShareYourColors #Rare #LittleLighthouse #SoonerSuccess #SibShops      

Welcome to the 3rd episode of our conversation with Charles.  We continue to bring education and support to others leading up to February 29, where we celebrate the uniqueness of being rare! (rarediseaseday.org).   Today we discuss Charles III's transition from Little Lighthouse into public school and the partnerships that helped make the process as smooth as possible.     Charles also educates us from a parent's perspective about Cornelia de Lange Syndrome and what he wishes everyone knew about CdLS.  His words and expertise from a parent's perspective help shed light on this rare syndrome.   Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.   With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.   Rare disease statistics to share with others: While each disease may be rare, collectively, they impact a large number of people. 300 million people worldwide live with a rare disease. There are over 6000 different rare diseases. 72% of rare diseases are genetic. 70% of these rare genetic diseases begin in childhood.   #CdLS #ShareYourColors #Rare #LittleLighthouse

Thank you for joining us for episode 2 (of 4) with Charles Moore as we discuss some of the most impactful people in his life as he began the advocacy journey on behalf of his son, Charles III.   Today's episode highlights his quest to learn as much as he can about Cornelia de Lange Syndrome (CdLS), and how incredibly helpful the cdlsusa.org website and organization has been in that search for knowledge and obtaining advocacy tips.   Charles also shares with us the role Little Light House in Tulsa, OK had on him as a parent to a young child with special health care needs.   Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.   With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.   Rare disease statistics to share with others: While each disease may be rare, collectively, they impact a large number of people. 300 million people worldwide live with a rare disease. There are over 6000 different rare diseases. 72% of rare diseases are genetic. 70% of these rare genetic diseases begin in childhood.   #Rare #CdLS #Syndrome #Fatherhood #LittleLightHouse 

Oklahoma Family Network's We Saved You A Seat had the incredible privilege to sit down with Charles Moore. Our fun, education, and meaningful conversation will be released fully in 4 separate episodes as we prepare to celebrate and honor the uniqueness of 300 million people worldwide who live with a rare disease on February 29th.   We introduce you to Charles Moore. He is a father to two children: a 13-year-old son, Charles III, who has Cornelia de Lange syndrome (CdLS), and a 16-year-old daughter, Zion. He has independently raised his children for most of their lives.   In this first episode of our 4-part release, Charles visits with us about his OKLEND (Leadership Education in Neurodevelopmental and Related Disabilities) experience. He also takes us back through early ultrasounds, delivery, and the diagnostic process for Charles III.   Rare Disease Day is the official international awareness-raising campaign for rare diseases, observed annually on the last day of February. The primary goal of this campaign is to increase awareness among the general public and decision-makers about rare diseases and their influence on the lives of families living with these conditions.   With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.   Rare disease statistics to share with others: While each disease may be rare, collectively, they impact a large number of people. 300 million people worldwide live with a rare disease. There are over 6000 different rare diseases. 72% of rare diseases are genetic. 70% of these rare genetic diseases begin in childhood.   #Rare #CdLS #Syndrome #Fatherhood #OKLEND  

Are you being kind to yourself?  Lauren Alvarez walks us through Mindful Self-Compassion and some amazing training she provided to Oklahoma Family Network families. I know you will be encouraged by her words and knowledge.   Lauren introduces us to a self-compassion test, and we encourage you to take the no right or wrong answers test to learn a little more about yourself and how you can become aware of your own self-compassion.  Take the Self-Compassion Test

Welcome to Prematurity Awareness Month and World Prematurity Day!   Prematurity Awareness Month is observed every November, with World Prematurity Day on November 17th, to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide. An estimated 15 million babies around the world are born premature each year and more than one million of them do not survive their early birth.   Today, We Saved You A Seat, visits with Kayla Pitts, mom to Zetta who was born at 26.1 weeks gestation.   Her conversation (broken into 3 parts) highlights maternal mental health in the perinatal and postpartum period, her preterm delivery, breastfeeding, and the treatment options she pursued for her health and family.   Part One: https://mcdn.podbean.com/mf/web/367x5m/Kayla_Pitts9pb0m.m4a Part Two: https://mcdn.podbean.com/.../Kayla_Pitts_Part_2br217.m4a

Thank you for joining us for part two of Kayla's journey with premature birth as she shares her experience where she highlights some very specific emotions and experiences tied to Zetta's birth.   

Welcome to Prematurity Awareness Month! Prematurity Awareness Month is observed every November, with World Prematurity Day on 17 November, to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide. An estimated 15 million babies around the world are born premature each year and more than one million of them do not survive their early birth. Today, We Saved You A Seat, visits with Kayla Pitts, mom to Zetta who was born at 26.1 weeks gestation. Her conversation (broken into 3 parts) highlights maternal mental health in the perinatal and postpartum period, her preterm delivery, breastfeeding, and treatment options she pursued for her health and family.

The Author of Leon The Brave Little Lion joins us today to discuss how his experiences with childhood cancer gave him a purpose and vision to support others who are part of his childhood cancer circle.   OFN's conversation with Andrew will leave you feeling encouraged, educated, and inspired to love and support families in unique and beautiful ways.

Part three of our conversation with Jade shares the importance and impact that local non-profits have on families.  You will hear Jade share just a little about some organizations that made big impacts on their family: The Kids Korral, KClub, Wyatt's Wings, and Art with Heart are a few examples of organizations that touched the Campbell's lives and will continue to leave an impact on other families fighting childhood cancer.   You will also hear an update on how Haddie is doing now; and we never want to leave out siblings.  Siblings who are being touched by a brother or sister fighting cancer, play an important role and are impacted as well; and this conversation shares some of the real and raw moments involving siblings in that care.   On behalf of the Campbell Family, thank you for listening today, supporting them, and praying for Haddie (and others) as childhood cancer impacts so many in our communities.

Part two of We Saved You A Seat's conversation with Jade highlights the amazing community Jade and her family have surrounding them.  Hearing how Jade's family, friends, and community surrounded and supported Haddie will give you ideas and inspire you to help others impacted by childhood cancer.    

Today you have the incredible opportunity to meet Jade Campbell and hear pieces of their daughter's journey and diagnosis of B-Cell Acute Lymphoblastic Leukemia.   As we continue to honor families who have experienced or are experiencing the childhood cancer journey, today we are reminded to celebrate, encourage, and cheer on the families who are fighting for a healthy future.   We are releasing our conversation with Jade in three parts today and we know all who hear, who are fighting for their healthy future, will feel encouraged and inspired...   Part One: Diagnosis Part Two: Friends, Family and Community Support (Ideas to help others) Part Three: Resources, Sibling Support, and Update on Haddie    

The Mack Impact | The Mack Impact   This release is one that openly shares and discusses the truth of pediatric oncology and the grief, no family should ever have to experience. It is important to help raise awareness, support, and educate our community that when this happens to a friend of the cousin to a neighbor who lives three doors down from you, you can help guide them to a resource tied to people who will love them and help carry them through the hard.   Thank you for being a part of this community and sharing stories of strength.    

We are well aware of the reasons people don't discuss pediatric cancer... It's hard... It's hard to think about. It's hard to think about any child experiencing cancer. It's hard to think about the possibility of your child experiencing cancer. We can become overwhelmed with grief and sadness as we imagine these things happening to others, especially children, and then deep sadness when we have to face the truth that it does happen, and when it happens, some don't survive.   Today we get to meet Mackenzie Asher, through the eyes of her daddy... You hear the hard, the love, and the strength!!   Mackenzie's family started a 501(c)(3) nonprofit organization in her honor, and you won't want to miss some of the amazing things they get to do for Oklahoma Families who are fighting life threatening illness.  Things these incredible kids and families wouldn't get to do without their help!   Visit:  Mackenzie's Story | The Mack Impact today!!  

Our guest today is Long Tran with F.A.I.T.H. KIDS, Inc. (https://faithkids10.org/).   Long, with his wife, Mary, started a 501c3 nonprofit organization, after their family lived through the devastating experience of their oldest having leukemia to help others.  In today's podcast, you will hear pieces of their journey and learn more about how you might be able to help children and families living with cancer and other life-threatening illnesses.   F.A.I.T.H. KIDS hosts an annual bowling tournament to help raise funds for families Fighting Against Illness To Heal (F.A.I.T.H KIDS)... This year's tournament, on Saturday, September 30, 2023, will be held in Edmond, OK at Bowlero Edmond (3501 S. Boulevard, Edmond, OK 73013) and truly there is something for everyone!!     As we help kick off Childhood Cancer Awareness Month, we hope you will find FAITH KIDS, Inc on Facebook and other social media platforms, follow, and share their information so that we can unite to bring awareness, education, conversation, and support to others who might be facing life threatening illness.     

Lauren talks us through logical consequences, the energy drain, and working through different perspectives of discipline and why we do what we do as parents.

Participants will explore what it means to accept, love, and support our children, as well as how we came to arrive at our own norms for parenting and family. Participants will have brief opportunities to identify motivations and goals, and areas for possible growth, because it can always be better.

This workshop is designed to help you understand why your teen may be using substances and what you can do to help them make better choices. Among other skills you'll learn how to have better conversations with your child and use behavior management techniques that can make a big difference.   Presented By:  MaryAnn Badenoch

Have a loved one with a mental health condition? Feeling alone? Don't know what resources are out there? Grieving the loss of the dream you had for you and your loved one? Come learn about "The Best Kept Secret" of Family Support Groups that are facilitated by someone with personal experience!

Erin Page, with MetroFamily which is Oklahoma City's top resource for family fun is our presenter/guest today! Get the scoop on the best FREE holiday and seasonal events for families in the metro, as well as sensory-friendly attractions and resources. Plus, learn about free resources focused on family mental health offered by local and national experts through MetroFamily.

Lisa Buck has been involved in the foster/ adoption world for almost 20 years as a foster and adoptive parent as well as serving as the first Foster Care Ombudsman in the State of Oklahoma. Lisa will share both her personal journey as well as some lessons learned as the Ombudsman in caring for Oklahoma's most vulnerable children and families.

Kodey Toney is a father, advocate, and director of the Pervasive Parenting Center. The presentation is filled with stories of his son Konner and their journey through navigating the system. Attendees will learn what Autism is, the behaviors related to Autism, and what to do if they feel that their child has Autism.

Mind your manners and be polite! But really what does that mean when words change all the time like bad is good and good is good? This session will walk through disability etiquette, and respectful language, and even touch on the scrambled terms that look like alphabet soup.

Parents deeply love their children, yet not all children feel that unconditional love and care. Join us for a practical and informative class about the Five Loves Languages of Children based on the book by Dr. Gary Chapman and Dr. Ross Campbell. We will learn how to use the knowledge of the Five Love Languages to connect with our children on a deep level and prevent and respond to discipline issues. This new knowledge can also be applied to a variety of relationships and friendships to improve your connections with others. Keynote 5 Love Languages of Children Presented By: Lauren Alvarez

Are you being kind to yourself as the holidays approach?  Lauren Alvarez walks us through Mindful Self-Compassion through some amazing training she provided to Oklahoma Family Network families, and I know you will be encouraged by her words and knowledge.     She introduces us to a self-compassion test, and we encourage you to take the no right or wrong answers test to learn a little more about yourself and how you can become aware of your own self-compassion.  Take the Self-Compassion Test  

Oklahoma Family Network had the incredible opportunity to visit with Cheryl Step MS, LPC, NCC, and NCSC to discuss creating resilience through trauma in our personal and professional roles; and even how each of us can have an impact on those around us.   Cheryl has extensive knowledge regarding Adverse Childhood Experiences (ACEs).  She displays expertise when presenting and training agencies' staff about developmental trauma and its effects on the brains and behaviors of children and family systems. She has experience presenting to large groups and training multiple lessons that build a foundation for trauma-informed care. She also has proficiency in consulting with agency leadership and coaching staff to use researched strategies and interventions to increase resilience. Cheryl brings real world experience and stories to her training from her 17 years of experience working in public schools as a counselor. ​She is certified in Traumatic Stress Studies by The Trauma Center and Trauma Research Center, is certified in ARC (Attachment, Regulation, Competency) Trauma Treatment for Children and Adolescents, and has completed training with Laura Porter and Dr. Rob Anda of ACE Interface to become a NEAR (Neurobiology, Epigenetics, ACEs, Resilience) Science trainer in Oklahoma.  She is a Licensed Professional Counselor and a Nationally Board-Certified Counselor and School Counselor.  She holds a master's degree in Counselor Education from Syracuse University. (creatingresilience.org)   Creating Resilience, LLC (creatingresilience.org) exists to train groups of individuals to respond and support people with trauma histories and Adverse Childhood Experiences (ACEs). Creating Resilience uses trauma-informed strategies to build safe environments, calm and focused behaviors, and increase competency and executive functions. Research shows that the power of one strong adult relationship is the key ingredient in overcoming adversity. Creating Resilience will foster strong relationships.   #ACEs #CreatingResilience #Trauma #TraumaInformed #Resilience #AdverseChildhoodExperiences   Below you will find several videos from her YouTube channel emphasizing her work and sharing knowledge.   1st video in the Coming Back with Compassion series:  Awareness:  https://www.youtube.com/watch?v=hFCJ17kJCQo&list=PLou3lrYybv9B8NWJACqEL6pLH5wv9sbeU&index=1&t=3s   2nd video in the series:   Adjustment:  https://www.youtube.com/watch?v=n_lJI8j0SLs&list=PLou3lrYybv9B8NWJACqEL6pLH5wv9sbeU&index=2&t=66s   3rd:  Action: https://www.youtube.com/watch?v=aeVYqTzu2QI&list=PLou3lrYybv9B8NWJACqEL6pLH5wv9sbeU&index=3&t=1s     Cheryl Step, MS, LPC, NCC, NCSC Trainer/Consultant Creating Resilience, LLC creatingresilience.org 405-612-9432 cstep.cr@gmail.com

Per 501(c)3 rules, it is important to note that Oklahoma Family Network cannot and does not endorse any one candidate for any reason.  The purpose of this podcast is to bring awareness, conversation, education, and support to families who have children with special health care needs or disabilities.  Ellyn's personal journey takes her to candidacy-level advocacy, and you will hear about some of that today.   Thank you for joining us today on the Oklahoma Family Network's podcast to learn more from families who have children with special health care needs and disabilities and hear ideas on how you can get more involved with advocacy efforts in your area.  Understanding and explaining to parents what ABLE accounts are, is only one of Ellyn's great talents!!    In today's podcast, Ellyn educates everyone on what OK STABLE accounts are and how to use them.  She also addresses the need for continued advocacy work in Oklahoma to keep ABLE accounts a top priority for families with children with disabilities as they plan for their child's financial future.    Ellyn also shares, how her experience and graduating from Catholic school provided desire and drive to help her children receive the same educational opportunities.

Per 501(c)3 rules, it is important to note that Oklahoma Family Network cannot and does not endorse any one candidate for any reason.  The purpose of this podcast is to bring awareness, conversation, education, and support to families who have children with special health care needs or disabilities.  Ellyn's personal journey takes her to candidacy level advocacy, and you will hear about some of that today.   Thank you for joining us today on the Oklahoma Family Network's podcast to learn more from families who have children with special health care needs and disabilities and hear ideas on how you can get more involved with advocacy efforts in your area.    Part two of our conversation with Ellyn has highlights and conversations focused on big advocacy work she's done in the community and with schools.  Celebrating the 25th Anniversary of the Americans with Disabilities Act as well as her experience receiving her education from a Catholic school and having that desire for her children as well.     25th ADA Celebration Walk Highlights: https://www.oklahoman.com/picture-gallery/news/local/oklahoma-city/2015/07/26/25th-year-of-the-ada/8769003007/  

Per 501(c)3 rules, it is important to note that Oklahoma Family Network cannot and does not endorse any one candidate for any reason.  The purpose of this podcast is to bring awareness, conversation, education, and support to families who have children with special health care needs or disabilities.  Ellyn's personal journey takes her to candidacy level advocacy, and you will hear about some of that today.   Thank you for joining us today on the Oklahoma Family Network's podcast to learn more from families who have children with special health care needs and disabilities and hear ideas on how you can get more involved with advocacy efforts in your area.    Oklahoma Family Network is incredibly happy to share the first episode of a three-part conversation with Ellyn Hefner.  After the birth of her son, William, and learning how to be the best mom and advocate for William, Ellyn, shifted careers to become a family support partner for the Oklahoma Family Network.   She became more involved at the policy level after graduating from Partners in Policymaking and she served on the Interagency Coordinating Council for Sooner Start as a member and Chair.   She has spent the last 18 years as a caregiver and professional dedicated to helping Oklahoma parents find hope and resources for their children with IDD and in today's podcast with Ellyn, you will hear about foundational experiences which have opened the door, which has led her to where she is now.

We continue our conversation with Michelle Weaver about her journey after delivering her son Drew at 26 weeks and spending 99 days in the NICU.  Today we discuss how she got through the holidays and their time at home, which brought its own challenges.     You will love hearing about Drew's two big sisters and feel encouraged by Michelle's story!!   Thank you, Weaver family, for sharing pieces of your story with us and pictures from Drew's First Christmas!!!  

Today you have the incredible privilege of meeting a beautiful mom who celebrates so much in the month of November.  Her experiences within this last year have her embracing Prematurity Awareness Month, and that combined with Native American Maternal Health Month and Adoption Awareness Month, she has big items to celebrate throughout all of November.   I know you will absolutely fall in love with the Weaver family as she shares about their premature delivery last year with their son Drew.   You will also hear her mention a preemie baby book which she purchased soon after his birth, where she documented many things.  You can find that book here:  My Preemie Baby Book - Etsy  

Oklahoma Family Network is incredibly happy to share the first episode of a three-part conversation with Ellyn Hefner.  After the birth of her son, William, and learning how to be the best mom and advocate for William, Ellyn, shifted careers to become a family support partner for the Oklahoma Family Network.   She became more involved at the policy level after graduating from Partners in Policymaking and she served on the Interagency Coordinating Council for Sooner Start as a member and Chair.   She has spent the last 18 years as a caregiver and professional dedicated to helping Oklahoma parents find hope and resources for their children with IDD and in today's podcast with Ellyn, you will hear about foundational experiences which have opened the door, which has led her to where she is now.

We are so excited to welcome Samantha Beckstrom to the podcast today.  You will hear her journey through an extremely preterm premature rupture of membranes (PPROM) and NICU Journey.   Thank you, Samantha, for sharing your journey with two NICU babies and helping others find strength as they experience NICU.

Stargardt Disease is a rare genetic eye disease that happens when fatty material builds up on the macula, the small part of the retina - which is needed for sharp, central vision.  Vision loss usually starts in childhood, but some people don't start to lose their vision until they are adults (Stargardt Disease | National Eye Institute (nih.gov)   Today you will hear one family's journey into discovering their son, Gabriel, has Stargardt Disease.  Gabriel's Mom, Melissa Weathers, does a beautiful job walking us through a two-year timeline, trying to figure out what was happening with Gabriel's vision.   Melissa also highlights some of the amazing people and resources they've been introduced to through the past several years, as well as shares her experience transitioning Gabriel to public school and establishing an IEP with his new school.   Resources Mentioned: Two Blind Brothers (https://twoblindbrothers.com/) New View Oklahoma (https://nvoklahoma.org/) OWL (Oklahomans Without Limits) Camp: (https://nvoklahoma.org/community-programs/owl-camps) Foundation Fighting Blindness (https://www.fightingblindness.org/chapters) Oklahoma Parents Center (https://www.okdrs.gov/guide/oklahoma-parents-center) Bookshare (https://www.bookshare.org/cms/) Dean McGee Eye Institute Pediatric Ophthalmology (https://dmei.org/services-specialties/pediatric-ophthalmology-strabismus/) Dr. Michael Siatkowski (https://dmei.org/providers/r-michael-siatkowski/)   #Stargardt #ChildrensEyeHealth #OWLCamp #TwoBlindBrothers #NewViewOklahoma #FoundationFightingBlindness #OPC #OklahomaParentsCenter #ChildhoodMacularDegeneration #CCTVMagnifier #IEP #VisualImpairment 

Happy Father's Day to the very special dads out there!!  This podcast is for YOU!!   This podcast is certainly for everyone, but especially our DADS!!!  Today we have as our guest, Jeremy Warren, Executive Director, of Dads on Special Assignment or DOSA.   Jeremy hosts a variety of activities, groups, and gatherings designed to help remind dads they are not alone in their journey of parenting a child with special health care needs or disabilities.  Dads On Special Assignment (DOSA) started with Jeremy and a few dads in his church as a ministry and has expanded into the community to help support the amazing dads who have been given a special assignment.   We are thankful for Jeremy and what he does to support dads and we are sure you will want to hear his words and heart today!  You will hear his passion, purpose and a little about, Landon, his inspiration.   Dads On Special Assignment: https://dosausa.org/

On October 3, 2019, Ryan and Lindsay Jones delivered their precious daughters Reese and Ryleigh at just 26 weeks gestation.    While Reese was rushed to the NICU, weighing just 1 lb, 14 oz; her sister, Ryleigh was held and loved on for the next few hours by her parents, who said hello and goodbye to their sweet girl within those short three hours of her life.   Today you hear the beautiful words of Lindsay!! You hear her story and desire to bring awareness, conversation, and support to others who may be walking through this very difficult journey of twinless-twin-loss.   We are so thankful for Ryan, Lindsay and their girls!!   #Twins #ReeseAndRyleigh #26Weeks #MicroPreemie #PPROM #PretermPROM #PrematureRuptureOfMembranes #InfantLoss #TwinlessTwin #Support