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 guardianship, wills, trusts, and future planning for our children. There's also the feelings that occur during thi ..read more

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 about her journey as a mom to children with disabilities, and how she advocated to start Love Your Story ..read more

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 opportunities and make the world better. Laura's goal is to "help mamas have more peace in their homes ..read more

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 combined their professional talents with a personal mission to help individuals and you will find their s ..read more

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 to ma ..read more

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, sharing stories and facts to educate others. Many parents host fundraisers to support research efforts ..read more

In this episode I interview Beck 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. Beck ..read more

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 and enjoy the life we are living?  Let's talk about hope - a settling in of a feeling of acceptin ..read more

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 to navigate a new way of life. Most importantly Leslie is wife to Mike and they have 2 daughters, Holl ..read more

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 poet and you’re in for a treat - she shares her beautiful poetry that will move you - I assure you. Sh ..read more