We Saved You a Seat

Ellyn Hefner and Advocacy Part One: Advocacy Adventures

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.

Prematurity Awareness (26 Weeks): Part Two with Michelle Weaver

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!!!

 

Prematurity Awareness (26 weeks): Part One with Michelle Weaver

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

 

Preterm Premature Rupture of Membranes (PPROM) with Samantha Beckstrom

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: One Family’s Genetic Journey Tied to Children’s Eye Health

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 

Jeremy Warren with Dads On Special Assignment (DOSA)

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/

Reese and Ryleigh: Twins, 26 Weeks, Preterm Premature Rupture of Membranes (PPROM), Twinless Twin

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 

Maternal Mental Health Awareness Week 2022: Part Two - James Craig, MSW, LCSW

We are certain you will truly enjoy today's conversation! As we continue our discussion on Maternal Mental Health, we highlight today, how you can bring awareness and support to your sister, friend, cousin, brother and others in your life who might be experiencing the number one complication from pregnancy and birth, a perinatal mood and anxiety disorder.

 

James frequently says, "It's so important to reduce stigma and talk about mental health as much as physical health; it's not "them" it's your sister, friend, neighbor... Not them, but "us". When you have any new parents in your life, reach out and ask not only about the new baby, but how are they? Can you schedule time to hold the baby so mom can take a break? Could you set times to call or text each week so they can talk to another adult and feel more like themselves?"

 

James shares with us how we can get involved in our community and provides some wonderful tools which are available through the Oklahoma State Department of Health Maternal Child Health website.

 

Thank you for partnering with us to bring awareness, conversation, support, and education this week on the subject of Maternal Mental Health.

 

Community Engagement Opportunities:

OKC PSI Climb Out of The Darkness Walk: https://climbout2022.causevox.com/team/team-okc

 

Tulsa PSI Climb Out of The Darkness Walk Info: https://climbout2022.causevox.com/team/team-tulsa

 

Resources Mentioned:

Postpartum Plan:  https://oklahoma.gov/content/dam/ok/en/health/health2/aem-documents/family-health/improving-infant-outcomes/maternalmentalhealth/Postpartum%20Plan_fillable.pdf

 

Mothership Rising App: https://www.mothershiprising.com/how-it-works/

 

Family Video Stories from Oklahoma: https://vimeo.com/showcase/6597453/embed

 

Maternal Mental Health Website: https://oklahoma.gov/health/family-health/improving-infant-outcomes/maternal-mental-health.html

 

Postpartum Support International: https://www.postpartum.net/

 

Oklahoma Perinatal Quality Improvement Center: https://opqic.org/

 

The Blue Dot Project:  https://www.thebluedotproject.org/mmhweek2022

 

#MaternalMentalHealth #PSI #BirthingComplication #OPQIC #MCH #MomsMindsMatter #COTD #ClimbOutOfTheDarkness #MMHWeek2022 #MakingOverMotherhood

 

 

Maternal Mental Health Awareness Week 2022: Part One - James Craig, MSW, LCSW

May is Mental Health Awareness Month and Maternal Mental Health Awareness Week is Monday, May, 2 - Sunday, May 8, 2022.

 

Today, as we kick off Maternal Mental Health Awareness Week, We Saved You A Seat visits with James Craig, MSW, LCSW and Public Health Social Work Coordinator for the Oklahoma State Department of Health in Maternal Child Health. 

 

In part one of our two-part podcast release this week, James helps us define what Maternal Mental Health is and gives us a clear understanding of when we should seek additional support from professionals who specialize in perinatal mood and anxiety disorders (PMADs). 

 

Thank you, James, for providing us with information today that helps us understand maternal mental health and equips us with the tools to know where to find the best types of support for the #1 complication of pregnancy and childbirth.

 

 

Resources Mentioned: 

Maternal Mental Health Website: https://oklahoma.gov/health/family-health/improving-infant-outcomes/maternal-mental-health.html

 

Postpartum Support Internation: https://www.postpartum.net/

 

Oklahoma Perinatal Quality Improvement Center: https://opqic.org/

 

The Blue Dot Project:  https://www.thebluedotproject.org/mmhweek2022

 

#MaternalMentalHealth #PSI #BirthingComplication #OPQIC #MCH #MomsMindsMatter 

 

Meningitis Awareness Day Family Story with Heather Pike

Heather Pike, Associate Director of the Oklahoma Family Network shares the "why" behind what she does professionally and personally.  In our latest episode of We Saved You A Seat, Heather walks us back 23 years ago when her son, Layton, was very sick and ultimately, diagnosed with meningitis. 

 

Heather discusses the impact meningitis had on Layton's developmental milestones, the impact it had on his little 11-month-old body and shares how important meaningful resources were to her, as well as her desire to help guide families to those wonderful resources and helpers in our community.

 

Some of the resources she highlights:

SoonerStart:  https://oklahoma.gov/health/family-health/sooner-start.html

Hearts For Hearing:  https://heartsforhearing.org/

DRS Resource:  https://oklahoma.gov/okdrs.html

Become a Supporting Parent:  https://oklahomafamilynetwork.org/what-we-do/become-a-supporting-parent/

 

For More Information on Meningitis:  https://www.meningitis.org/