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Mama AdvocateAdvocating while trusting your gutIn this episode, we have invited Theresa Bartolotta. She is a mom, wife, speech pathologist, writer, teacher, and podcaster. Over thirty years ago, her life changed dramatically when her daughter was diagnosed with Rett syndrome. Since that time, she has worked to help families, especially mothers, navigate this world. She is also the host of the Safe Harbor podcast, a podcast for parents of children with disabilities and the people who love them.
You can check her here:
Website: theresabartolotta.com
Podcast: The Safe Harbor Podcast: A Podcast for Parents of Children with...2023-12-0133 min
Safe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 22 - A Look Back and A Look ForwardIn this episode your host, Theresa Bartolotta, is excited to announce that she is resuming the podcast! She shares an update on life and the reasons behind the long gap between episodes. Theresa reviews podcast statistics and how successful the previous episodes have been with over 2500 listens in 34 countries! The core principles behind the podcast remain the same: to share experiences about parenting children with disabilities, sharing our stories (not comparing), and valuing every life. This podcast is for parents who are walking this challenging path. We parents did not choose to have our children be born with disabilities, b...2023-09-2014 min
Talking With Tech AAC PodcastDr. Theresa Bartolotta: Supporting AAC for People with Rett SyndromeThis week, Rachel interviews Dr. Theresa Bartolotta, an SLP who is a parent to Lisa, a young girl with Rett syndrome. Dr. Bartolotta is co-author of the recently published Rett Syndrome Communication Guidelines and serves as consultant on communication to the International Rett Syndrome Foundation (ISRF). Dr. Bartolotta shares about putting together the Rett Syndrome Communication Guidelines, her journey as a parent of a child with Rett, and the IRSF’s mission to spread the word about Rett to more SLPs, teachers, and families.
Before the interview, Rachel and Chris chat about Chris’s GIPHY.com channel, using...2023-03-0941 min
Keys for SLPsKeys to the Rett Syndrome Communication GuidelinesGuest: Theresa Bartolotta, Ph.D., CCC-SLP - Dr. Bartolotta provides her perspective as a mother of a daughter with Rett Syndrome and an SLP who has focused her career on helping people with Rett Syndrome and their families communicate. In this one-hour conversational audio course podcast, Theresa describes the genetic presentation, defining characteristics, typical progression of symptoms, and variability of Rett Syndrome. Next, she discusses challenges for SLPs working with individuals with Rett Syndrome and their families. Finally, Theresa outlines the Communication Guidelines published by the International Rett Syndrome Foundation for speech-language pathologists, which she co-authored. Theresa’s life ex...2023-03-061h 05Safe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 21 - Thoughts on Stages of Parenting and the Details and Feelings about Decision Making as we AgeIn this solo episode I talk about stages of parenting a child with a disability. First there's the initial stage, when we deal with a diagnosis and setting up a treatment program and a community of care. Then there's the middle stage, when we are busy with educational programs, managing a medical team, IEPs, therapy, and advocacy. That's a really busy time. Then there's the third stage, as we and our children age. In this third stage we are faced with managing details around guardianship, wills, trusts, and future planning for our children. There's also the feelings that occur d...2022-11-2318 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 20 - Creating Places of Belonging for Families Impacted by Disabilities; An Interview with Abby Burle of Love Your StoryIn this episode I speak with Abby Burle, founder of Love Your Story, an organization dedicated to create places of belonging for families impacted by disabilities. This project started after Abby and her husband Ryan traveled around the country seeking medical care for their triplets. They realized the financial impact of disability on family, and that many families spend more than 22% of their annual income on expenses related to the disability. In the episode, Abby talks about her journey as a mom to children with disabilities, and how she advocated to start Love Your Story. She shares the story of...2022-11-0737 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 19 - Getting Life Under Control While Raising Children, Several with Disabilities, with Laura Hernandez from Mama SystemsIn this episode I interview the fun and inspiring Laura Hernandez of Mama Systems. Laura is mom to a large family and several of her children have disabilities. Listen to Laura explain how she turned her challenging life into one of peace and organization using systems. Laura is an example of someone who is using their talents and their gifts to turn the world right - to make something positive. This is such an important part of our mission here at Safe Harbor - to turn challenges into opportunities and make the world better. Laura's goal is to "help m...2022-10-3136 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 18 - Interview with Sam and Sarah of the pRETTyhappy podcast.I really enjoyed interviewing Sam and Sarah Ahlstrom, parents to a young girl with Rett syndrome, and co-hosts of the pRETTy happy podcast, a show dedicated to "Bringing families and friends together from the Rett syndrome community to discuss life, research, and just have fun." I am excited to post this interview during Rett Syndrome Awareness Month, but the episode is not just for people who love someone with Rett syndrome. Sarah and Sam are an example of folks who are taking a challenging experience and working to make things better in this world. Their story will inspire others t...2022-10-1752 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 17 - The Two Sides to Awareness Months - Pride and SorrowIn this solo episode, I talk about Awareness Months, or Days, when a particular disorder is acknowledged. October is Rett Syndrome Awareness Month, and as a mom of a young woman with Rett syndrome I support many activities this month to raise awareness about Rett. Many other disorders are acknowledged in a similar way, with specially designated months of days. There can be two sides to how parents of children with disabilities handle these months/days. First, with pride and enthusiasm, sharing stories and facts to educate others. Many parents host fundraisers to support research efforts. In contrast, there c...2022-10-1014 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 16 - A Koolen Mama Tells Her Story of Living with, and Parenting Children with Koolen-de vries syndrome.In this episode I interview Becky Tilley , who describes herself as "a rare mama living with Koolen-de vries syndrome." Becky has three beautiful children and her two youngest also have KDVS. She is a very passionate writer and rare disease advocate. In her open and beautiful story, Becky shares about her own life, growing up as someone with different learning abilities who struggled in school. As a mother trying to understand her second son's developmental challenges, Becky learned that she, and her son, shared the genetic disorder KDVS. Becky's next child is also a KDVS baby. Becky shares her ch...2022-10-0340 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 15 - From Grief to Hope and Learning to Practice GratitudeIn this solo episode I talk about the cycles of grief and hope, and how the feeling of hope, and a gratitude practice, can help us get through the tough times. Parenting a child with a disability can be a rollercoaster - one day you're up, the world looks beautiful, and the next day something happens with your child, and you're down in the dumps yet again. It's a stressful, exhausting process that's harmful t our bodies and our minds. So how can we balance this out to protect ourselves and enjoy the life we are living? Le...2022-09-2622 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 14 - A Life of Volunteerism and Action: A Conversation with Leslie Greenfield on Seeing a Need and Filling ItToday my guest is a dear friend and colleague - Leslie Greenfield. Leslie has lived a life of volunteerism while raising her daughter Heather, who has Rett syndrome. I think you will find inspiration from this conversation. In her life, Leslie has worked tirelessly to fill needs she identifies.Leslie currently serves as the New Jersey Regional Representative for the International Rett Syndrome Foundation. In this role she supports new families as they face this terrifying diagnosis and learn to navigate a new way of life. Most importantly Leslie is wife to Mike and they have 2 daughters...2022-09-1244 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 13 -An Interview with Laura Will, on Parenting a Child with a Disability, and being a Dragon MomI am so excited to welcome Laura Will to the podcast. In the last episode I interviewed the co-founders of Know Rare - Nina and Jack Wachsman, and today I have an interview with Laura Will, who writes blogs about the parental experience for knowrare.com as well as leading their patient advocate team.This is a very special interview - Laura, a trained nurse practitioner, talks about her personal experience as mom to her 2-year-old son Alden who has a rare disease. She is a gifted writer and a poet and you’re in for a tr...2022-09-0550 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 12 - Connecting Individuals with Rare Disease to Clinical Trials: Nina and Jake Wachsman from Know RareThe Safe Harbor podcast is a show for parents of children with disabilities and people who love them. Your host is Theresa Bartolotta. This episode features an interview with Nina and Jake Wachsman, a mother and son team who started Know Rare, a company that supports individuals with rare diseases by helping them find clinical trials. Know Rare also provides information to support individuals and their families as they navigate the unique world of having a rare disease. Nina and Jake combined their professional talents with a personal mission to help individuals and you will find their story inspiring. T...2022-08-2938 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 11 - Celebrating our Differences and Valuing Inclusion! An Interview with Anna Moates, co-author of "Almost Twins", and her sister AshleyIn this episode Theresa interviews sisters Anna and Ashley Moates, to learn about the amazing achievements of Anna, a young woman with Down Syndrome. Anna Moates is the co-author of Almost Twins, a book she wrote with her friend Anna Penland, about their friendship. In the book they talk about each of their strengths, they celebrate their differences, and they highlight the importance of inclusion for all. Anna is a graduate of the EAGLES Program at Auburn University, lives independently, and is about to start a new job at Bitty & Beau's coffee shop in Auburn AL. This...2022-08-1536 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 10 - Anything is Possible - Raising Conor, A Young Man with Down Syndrome, with Joyce WrightIn this episode, I speak with Joyce Wright, mother of Conor, a 31-year-old young man with Down syndrome. Their story is one of great joy and achievement! Joyce holds a doctorate in Nursing and is a professor at a NJ University. She’s a volunteer and a good friend and support to many and she shares her experiences today as a mom raising her young adult son. Conor works at No Limits Cafe in Middletown, NJ, an employer of young adults with developmental disabilities. They believe that everyone can be a contributing member of society. For Joyce's di...2022-08-0140 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 9 - What I Wish I Could Tell My Younger SelfWelcome to this the Safe Harbor podcast - a show for parents of children with disabilities. In this episode I talk about what I wish knew as a young mom learning that my child had a disability. The world and the future can look so dark, and the problems seem so big, at the start of this journey. There are many lessons learned over the years. Please give a listen and let me know your thoughts - did this resonate with you? What would you like to tell your younger self to make the journey easier? The Sa...2022-07-2521 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 8 - Travel Tips for Parents of Children with Disabilities with Dawn BarclayIn this episode, your host Theresa Bartolotta talks with Dawn Barclay, whose book "Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse" will be released on August 15, 2022. Travel has been a huge challenge for my family in the past as it is for many families. Today you will hear my conversation with Dawn Barclay - author of an upcoming book Traveling Different: Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse. Dawn is an award-winning author who has spent a career working in different aspects of the travel industry. She started...2022-07-1136 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 7 - Advocating for your Child at IEP Time with Christine ReillyIn this episode your host Theresa Bartolotta speaks with Christine Reilly, who works to help parents advocate for their children with disabilities in the special education space. Christine Reilly is a mom of 4 girls, a teacher of students with Visual Impairments and Assistive Technology Specialist, and an IEP Coach. She has been in the Special Education field for over 20 years and is a lifelong learner. Christine spent time training and volunteering. at the Federation for Children with Special Needs to increase her knowledge in advocating for students with special needs. When she walks into her own children’s IEP meeti...2022-06-2743 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 6 - Planning for An Amazing FutureTheresa is back after a brief break with a solo episode. She talks about the three phases of life once you have a child with a disability: the time before the diagnosis, the present time, and the future. We were different people before the diagnosis, with dreams and visions. Then the diagnosis comes, and we are forever changed. In the present, we are here, and we are stronger and better than before! But often we are so busy caring for others, under tons of stress, and our current ability to function is compromised. We need to care for ourselves f...2022-06-2013 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 5 - An Important Conversation about Siblings of Children with Disabilities with Sue LevineIn this episode Theresa talks with Sue Levine, Social Worker, and Co-Founder of Family Resource Associates in Red Bank, New Jersey. FRA is a not for profit agency that provides services to people with disabilities across the lifespan, helping them realize their great potential. Sue has spent her entire professional career working with children with disabilities and their families. She has conducted support programs for parents and siblings of children with differing abilities since 1979. Among those programs, Susan has coordinated support groups specifically for parents of children with Down syndrome. She has presented on the needs of siblings at...2022-03-1836 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesEpisode 4 - FearIn this episode Theresa talks about the different types of fear we feel. The first is the type of fear we experience when we or a loved one are in danger. Parents living with children with special needs can experience fear a lot, due to medical, emotional or educational issues that lead to stress and worry. This constant state of fear can be harmful so Theresa talks about some strategies to help mitigate those fears. The second type of fear is the fear we feel when we experience something overwhelming and big, like a new job or a new...2022-03-1020 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesReflections on Raising an Adult Son with Autism; A Conversation with Patty ShannonSafe Harbor is a podcast for parents of children with special needs and anyone who loves someone who is a parent of a special child. In this episode, host Theresa Bartolotta talks with Patty Shannon, mom to a terrific young man, Tom, who has autism. In this wide-ranging conversation, Patty talks about how her son was able to go off to college, live on his own, and how she, her husband, and Tom all transitioned to another state as part of the family's long-term plan. Topics like maintaining a career, funding services, finances, guardianship and trying to plan for t...2022-02-1537 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesHow This Experience Makes Us BetterIn this episode host Theresa Bartolotta explores the evolution of grief, from an initial experience of great loss and scarcity to a place of acceptance and abundance. You can find the New York Times articles Theresa authored here: Theresa E. Bartolotta - Motherlode Blog - The New York Times (nytimes.com). Email Theresa at safeharborpodcast@gmail.com to join the mailing list and get updates. Join the Safe Harbor Podcast group on Facebook to connect and continue the discussion! Please share this podcast with anyone you know who might enjoy these topics. Thanks for listening!Come share y...2022-02-0218 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesSeason 1 Episode 1Welcome to Season 1, Episode 1! In this episode I share my inspiration for the podcast and some of my personal story as a mother to a beautiful young woman with special needs. My goal is for this podcast to inspire you to move into the greatness and possibility that is granted you as a parent of a child with special needs. Our lives are profoundly changed when our special child comes into our lives. With this podcast, I hope to create an inspired community where we share our stories, our joys, our challenges and our possibilities. Please join...2022-01-1817 minSafe Harbor: A Podcast for Parents of Children with DisabilitiesSafe Harbor Podcast TrailerCome share your thoughts in the Safe Harbor Facebook group. And find me on:Instagram: @theresabartolottaFacebook: Safe Harbor: A Podcast for Parents of Children with Special NeedsWebsite: https://www.theresabartolotta.com/Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you. 2021-12-2802 min