Extra Lucky Podcast

In this episode of the Extra Lucky Podcast, Taryn is joined by Potty Training Consultant Allison Jandu and Disability Advocate & Parent Elena Croy to discuss The Adaptive Toolkit for Potty Training Children with Disabilities. They share their personal experiences with potty training, the challenges faced by parents in the disability community, and the importance of celebrating your version of success in potty training. The conversation emphasizes the need for individualized strategies and the significance of recognizing small wins throughout the journey. Taryn, Allison, and Elena also peel back the curtain on their collaborative journey in creating a resourceful book aimed at helping parents navigate the potty training process for children with disabilities. They emphasize the importance of empowerment, community support, and the need for accessible resources. The discussion covers various themes including the IEP process, readiness for potty training and collaboration with care providers. They also reflect on the challenges and triumphs of the book creation process, highlighting the significance of providing a comprehensive guide for families.You can find all the info about the book at www.pottytrainingchildrenwithdisabilities.com which has info on all contributors, links to favorite products and exclusive coupons from our sponsors. You can learn more about Allison Jandu, the Potty Training Consultant on social media @pottytrainingconsultant. Learn more about Taryn, Jess & the Extra Lucky Community on Instagram @extraluckymoms, @tarynlagonigro and @jessquarelloThe Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

It’s an ELP takeover with Rise Pediatric Intensive Therapy! In this conversation, Nicole Readie and Aliza Sackin, co-owners of Rise, discuss their backgrounds in occupational and physical therapy, their journey to founding Rise, and the importance of intensive therapy for children with disabilities. They emphasize the significance of neuroplasticity, the need for parent support, and the unique challenges faced by families navigating therapy. The discussion highlights the collaborative approach of Rise and their commitment to creating a supportive environment for both children and parents.You can follow along with Rise and the incredible patients they get to work with daily @riseintensivetherapy. Learn more about Taryn, Jess & the Extra Lucky Community on Instagram @extraluckymoms, @tarynlagonigro and @jessquarelloWant to take over the podcast? Email us at hello@extraluckymoms.com with your idea!The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

In this episode of the Extra Lucky Podcast, hosts Taryn and Jess sit with Heather Sachs and Stephanie Smith Lee from the National Down Syndrome Congress (NDSC) to discuss both their personal journeys and the critical advocacy work they are involved in. The conversation highlights the significance of policy changes, the challenges faced by families in the Down Syndrome community, and the current political landscape affecting disability rights. The guests share insights on the Individuals with Disabilities Education Act (IDEA), the need for federal oversight in education, and the broader implications of advocacy for all individuals with disabilities. In this conversation, the speakers discuss the critical roles of Medicaid in supporting individuals with disabilities, the implications of proposed work requirements, and the importance of advocacy in protecting these essential services. They emphasize the need for community support and personal well-being amidst the challenges of navigating healthcare policies and legislative actions.You can stay up to date on all the latest going on in disability policy by following @ndscongress and by signing up for their advocacy alerts here. Learn more about Taryn, Jess & the Extra Lucky Community on Instagram @extraluckymoms, @tarynlagonigro and @jessquarelloThe Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

In this episode of the Extra Lucky Podcast, Taryn and Jess sit down with Amanda Owen, a children's book author and nonprofit founder, to discuss her journey growing up with her brother Nick, who has a rare disability. Amanda shares her experiences as a sibling, her transition from teaching to founding Puzzle Pieces, a nonprofit that supports individuals with disabilities, and her insights on caregiving and community inclusion. The conversation highlights the importance of communication within families, the impact of Amanda's books, and the small steps individuals can take to create inclusive communities. Amanda emphasizes the need for resilience and the power of sharing stories to inspire others. Amanda recently published her first book, Rarely Different, to help disability parents navigate the beautiful, challenging and often unspoken uncertainty of raising both a neurotypical child along side a child with a disability.You can pick up Amanda’s new book at https://piecesofme.org/my-memoir/ and find her on Instagram @piecesofmebyamanda where you can see all of her work. Learn more about Taryn, Jess & the Extra Lucky Community on Instagram @extraluckymoms, @tarynlagonigro and @jessquarelloThe Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

In this episode, Taryn and Jess kick off Season Two of the Extra Lucky Podcast the same way they did Season One, by interviewing each other! They reflect on their experiences from Season One, discuss the fun and challenges of podcasting, highlight memorable guests, and share personal insights gained from their conversations. The hosts also touch on the importance of advocacy, the impact of social media, and the lessons learned from their guests. They share behind-the-scenes stories and set goals for the new season, emphasizing the need for vulnerability and community engagement. Taryn and Jess also discuss their aspirations for the podcast, including dream guests and the importance of elevating voices within the disability community. The conversation touches on personal connections, inspirations, and lighthearted moments, culminating in reflections on what makes them feel extra lucky in their lives.Learn more about Taryn, Jess & the Extra Lucky Community on Instagram @extraluckymoms, @tarynlagonigro and @jessquarelloThe Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

In this episode of The Extra Lucky Podcast, Taryn and Jess speak with Carissa Menard from Hearts Connected, a mental health company specializing in virtual child life services. Carissa shares her personal journey with child life services, having experienced leukemia as a child. The conversation explores the various ways child life services support families through medical and non-medical challenges, the importance of addressing grief and loss, and the unique needs of siblings in medically complex families. The discussion emphasizes the significance of honest communication with children and the need for emotional validation. In this conversation, Carissa Menard discusses the importance of empathy in child life services, the role of siblings during medical challenges, and how parents can navigate feelings of guilt when one child requires more attention. She also shares insights about her organization, Hearts Connected, which aims to provide continuity of care for families and raise awareness about the role of Child Life Specialists. You can learn more about Hearts Connected on Instagram @heartsconnectedllc or on their website. The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

In this episode of the Extra Lucky Podcast, hosts Taryn and Jess welcome Brett Garrison, a special needs financial advisor. Brett shares his personal journey into the field of special needs financial planning, emphasizing the importance of creating a secure financial future for children with disabilities. The conversation covers essential topics such as the significance of financial planning, debunking myths about who needs it, the steps families should take to start planning, and the differences between special needs trusts and ABLE accounts. Brett also discusses navigating government benefits and the importance of having a comprehensive plan in place. In this conversation, Brett Garrison discusses the intricacies of financial planning for families with special needs children, focusing on the importance of understanding government benefits like SSI and SSDI, the role of life insurance, common planning mistakes, and the need for community support and professional guidance. He emphasizes the importance of proactive planning and legislative advocacy to improve the financial landscape for individuals with disabilities. You can find Brett and his 1847Financial Special Needs Planning Team on their website, Facebook or on LinkedIn.  The Extra Lucky Podcast is produced by Andie Amit of ⁠Sprouting Productions⁠. 

In this episode of the Extra Lucky Podcast, hosts Taryn and Jess interview Miracle Pelayo, an actress, model, and advocate for individuals with cerebral palsy. Miracle shares her journey from a challenging childhood filled with medical appointments to becoming a trailblazer in the entertainment industry. She discusses the importance of representation for disabled individuals in media, her campaign 'Making Cerebral Palsy Beautiful', and her aspirations for the future. Miracle emphasizes the need for inclusivity in fashion and the media, and how her disability has shaped her identity and mission to inspire others. You can learn more about Miracle on her website, on Instagram @miraclepelayooffficial or on TikTok @miraclepelayo_ The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

We’re not sure we can say enough about this episode to truly capture its meaning. Our dear friend April Aguilera took over as guest host to sit down with the incomparable Amanda Booth. These two mamas share the common experience of raising a child with a dual diagnosis of both Down syndrome and autism. You’ll get to hear about their experience through their own vulnerable words and witness the deep connection and love they have with their children, regardless of the gap in verbal communication. This is such an important conversation that is not often had in our community, and we thank these very busy women for taking the time to have it.  Amanda Booth is a model and actress who became an advocate for inclusion in the media after giving birth to her son Micah, who has Down Syndrome and Autism. She has written articles globally for Harper’s Bazaar and been featured with her son as the first person with Down Syndrome on the cover of Vogue. She has received the Quincy Jones Exceptional Advocacy award for her involvement with the Global Down Syndrome Foundation in 2019. Branching out from being a social media advocate, she now produces inclusive projects which have been paving the way (at festivals like SXSW) for other actors with Intellectual Disabilities. You can find her on Instagram @amanda_booth or @lifewithmicah April Aguilera lives in Savannah Georgia. Her second daughter, Paloma, was born with the unexpected birth diagnosis of Down syndrome and nothing was ever the same again. April processed her daughter's diagnosis through creating, and opened her one woman dramatic musical, A Sea Full of Stars, in New York in 2019. April has a graduate degree in screenwriting from The Savannah College of Art and Design, and while in graduate school she shot her multi award-winning drama film, For Paloma. April has honed her skills as a filmmaker by working in film and television for companies such as Sony, Apple, Showtime, and Array. You can find her @aprilm.aguilera, and support her latest project through her non-profit at www.projectmoonrose.com.  The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

In honor of Thanksgiving, we are bringing you a bonus episode! This quick win is a meditation centered around gratitude. We hope that you can take this bit of time for yourself anytime you need, to ground yourself about what truly matters and all that you accomplish day after day, just by existing in this world! This is great to come back to anytime during the busy holiday season and beyond. The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

No matter which way you voted, you've probably been inundated with information about what is going to change. Taryn had the benefit of being on a call with the National Down Syndrome Advocacy Coalition (part of the National Down Syndrome Congress), and we are downloading all the information to you! While this information was from a Down syndrome organization, it's really applicable to disability rights in general, so we hope that our community will find it helpful. In this episode, we talk about signing up for Advocacy Action Alerts. You can do so at this link. Stay in touch with us @extraluckymoms, @tarynlagonigro and @jessquarello, where we'll keep you informed as always! The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

A much needed update on 2024, Season 2 and the future of ELM 💜

We are beyond excited to drop our interview with the incredible Ella Green on the Extra Lucky Podcast!  Ella is a future special education teacher currently studying at Purdue University and the powerhouse host of the From Label to Able podcast.  Her journey into advocacy began early, inspired by her inclusive education and the amazing peers she met along the way.  Ella's passion for creating change in the disability community is truly inspiring, and we can’t wait for you to hear her story!  Don't miss out on this powerful conversation with a young advocate who's making waves!  You can learn more about Ella and her work on Instagram @from.label.to.able The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

Once we wrapped recording today’s episode, we knew we had to air this around Back-to-School season. An educator for 14 years, Kasey Hilton is passionate about inclusion in her classroom. She believes that in the disability community we ask people with disabilities to alter who they are and "fit in" with their peers, when perhaps, we should be teaching others how they can be inclusive and kind by learning what they can do to make sure everyone is welcome and accepted. Woven in this conversation around education is also the story of a mom who was the first patient to undergo fetal surgery for Spina Bifida in the state of Michigan.  Kasey Hilton is a published author, speaker, and advocate in the disability community. She is a mom of two boys; both who receive special education services. Currently Kasey is using her platform and experience teaching to support families as an advocate for the Arc which is a National Nonprofit that supports people with disabilities. She assists families through the IEP process to ensure that students are getting what they need to be their most successful and authentic selves. You can find Kasey on Instagram @almostsavedbythebell and @kaseys_corner_  The Extra Lucky Podcast is produced by Andie Amit of ⁠Sprouting Productions⁠. 

We had the chance to get to know Dr Michelle Sirak when she reached out after ELM presented to Hackensack University Medical Center Pediatric Grand Rounds. As parents, all we want while raising our kids is for our medical teams to listen to us. Dr Sirak walks the road with her families and we think her philosophy will inspire both parents to find their voice and other doctors to lean into the knowledge of parents as part of the medical team. We are grateful that doctors like her exist and that she works in a hospital system that fosters that environment.  After completing college at Rutgers University and medical school at UMDNJ-Robert Wood Johnson Dr Sirak went on to complete her residency in physiatry at Columbia and then specialize in pediatrics through an additional 2 year fellowship at Montefiore Medical Center.   Dr Sirak currently leads the pediatric physical medicine and rehabilitation department at the Joseph M Sanzari Childrens Hospital at Hackensack Meridian Health.  With more than a decade of experience, Dr. Sirak specializes in helping patients achieve their maximum ability and mobility.  The Extra Lucky Podcast is produced by Andie Amit of ⁠Sprouting Productions⁠. 

In this episode of the Extra Lucky Podcast, you’ll get to know pediatric occupational therapist Lora Jackle. Not only does Lora have an incredible perspective on patient and family care, but her personal story is one we are so grateful we get to share. As a single woman in her early 20s, Lora fostered then adopted a child with infant leukemia. In later years, she subsequently welcomed two more daughters, one of whom was born with Down syndrome. Don’t miss this story, interwoven with resilient and serendipitous moments.  About Lora: Lora Jackle is a pediatric occupational therapist and a manager of a busy outpatient rehabilitation services team at a large hospital in Virginia. She is a graduate of the Virginia Partners in Policymaking program, and as such is a trained Virginia advocate for people with disabilities. She is the mom of three awesome girls (Marz, Riley, and Abby) and is passionate about raising self-advocates. Lora lives in Virginia with her husband, 3 girls, and her mom. She loves traveling and hopes to empower all three of her girls to explore the world!  You can find Lora on Instagram @loraot. You can also find a beautiful take on her story in the book Dear Mama: Stories of an Extra Lucky Life. The Extra Lucky Podcast is produced by Andie Amit of ⁠Sprouting Productions⁠. 

Our community is no stranger to Michelle Fruhschien. She’s joined us on the Today Show, written for Dear Mama: Stories of an Extra Lucky Life and is one of ELM’s biggest cheerleaders. We think what resonates so much with us about Michelle is her honesty, her ability to laugh through stressful times and her fierce advocacy for Jordan’s syndrome and the disability community at large. This episode has all of that, and we know you will love it! Michelle Fruhschien is a mother, wife and special educator. She started her advocacy website and social media handles to bring more awareness to her daughter and peers with a rare disease, Jordan's Syndrome. As a special educator, it blossomed into a larger umbrella and speaking out and bringing light to disability in general. Life can be hard, so also bringing humor into our every day struggles is a way that Michelle finds silver linings. You can find Michelle on Instagram @mamabearforrare and her website ⁠www.mamabearforrare.com⁠. You can learn more about Jordan's Syndrome @jordansguardianangels or at www.jordansguardianangels.org. The Extra Lucky Podcast is produced by Andie Amit of ⁠⁠Sprouting Productions⁠⁠. 

If you're looking to talk about disability sibling relationships, mental health, disability diagnosis and motherhood, then WOW this episode is for you. Taryn interviews Kara Kushnir on Episode 19 of ELP. Kara is a parent, sibling and psychotherapist in northern NJ, specializing in perinatal mental health as well as working with children, teens and parents. She grew up with a younger sister with disabilities, and went into the field of mental health to support other families impacted by chronic illness, disability, trauma and the challenges that can arise from those lived experiences. She is also a mom to a child with disabilities, and as a former child study team case manager turned private practitioner and advocate, she aims to "support parents to parent" from a place of knowledge and empowerment. Kara also serves on the board of Postpartum Support International NJ, and formerly served on the NJ Council on Developmental Disabilities, and is very involved in advocacy work around maternal mental health and disability. You can learn more about Kara at her website or on Instagram @aworkofheart_counseling. The Extra Lucky Podcast is produced by Andie Amit of Sprouting Productions.

In honor of July being Disability Pride Month, we are so excited to bring you a conversation with longtime advocate Jawanda Mast. Jawanda Mast is the NDSC Grassroots Advocacy Manager. She has been involved in disability policy advocacy since her daughter Rachel was born with Down syndrome almost 25 years ago. Jawanda has graduate and undergraduate degrees from the University of Arkansas and was honored with the 2017 Alumni Community Service Award for her body of advocacy work.  She and her daughter Rachel spent eight years advocating for the passage of the federal ABLE Act and have spoken around the country on ABLE, Advocacy, and Inclusion. Her daughter Rachel opened the first Kansas ABLE Account. She has provided written and oral testimony on a variety of federal and state policy issues and has served on many state-appointed committees.  Jawanda believes we all have a story and we can use those stories to impact change at all levels. She is passionate about the meaningful inclusion of individuals with Down syndrome and other intellectual disabilities in all aspects of the community and has presented at many conferences.  Jawanda says her work is a #laborofloveandconviction.   You can find Jawanda @sassysutherngal (Twitter), www.thesassysoutherngal.com, @thesassysoutherngal (IG and Threads), and www.ndsccenter.org.  In this episode, we talk about ABLE Accounts. You can head to the Able National Resouce Center at https://www.ablenrc.org to learn more and find links by state to open an account. 

Today we are joined by Yamira Siu as we talk disability, being a working parent and creating inclusive spaces, including in the corporate world.  Yamira Siu is an Executive Assistant at a French Investment Bank in NYC with 25+ years of experience across various business lines within the firm. She is also the Co-President of the firm's Diverseabilities Employee Resource Group (ERG), and the Co-President of a non-profit organization (Gigi’s Playhouse NYC) within the Down syndrome community where she volunteers 100% of her time and her teenage son is a long time member. On October 19, 2022, Yamira was awarded a Certificate of Recognition by Senator Cordell Cleare, New York State Senate, 30th Senate District, for her Dedication, Leadership, and Service to GiGi’s NYC – Down Syndrome Achievement Center. Yamira is passionate about creating impactful change and connecting people throughout communities regardless of race, beliefs, religion or political affiliation. You can learn more about Gigi’s Playhouse at www.gigisplayhouse.org.