Claim OwnershipSafe Harbor: A Podcast for Parents of Children with Disabilities
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© 2023 Safe Harbor: A Podcast for Parents of Children with Disabilities
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The Safe Harbor Podcast is for parents of children with disabilities. This show enables parents to come together as a community to share, learn and support each other on this complex path. Your host, Theresa Bartolotta, is mom to a young adult with Rett syndrome and has worked with hundreds of families as a pediatric speech pathologist. 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!
23 Episodes
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In 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 li...
In 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 guardianshi...
In 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 a...
In 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 ...
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 challe...
In 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, ...
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 learn...
In 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 ...
Today 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 ...
I 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 ...
The 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 co...
In 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...
In 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 c...
Welcome 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 ...
In 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 Neurodi...
In 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 C...
Theresa 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 abilit...
In 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 sinc...
In 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 ove...
Safe 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 maintain...
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