Walking with Freya; A Journey Through Special Needs Parenting-logo

Walking with Freya; A Journey Through Special Needs Parenting

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This podcast is for parents and caregivers of children with special needs to share stories of the challenges and joys we face.

This podcast is for parents and caregivers of children with special needs to share stories of the challenges and joys we face.
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This podcast is for parents and caregivers of children with special needs to share stories of the challenges and joys we face.








Ep 18 - Responsibilities

We all feel it at some time or another, like we are failing along this journey. But we should remember that we are also growing and learning and offering our children what we can. Sometimes the responsibilities of raising a child with special needs can seem overwhelming, and that's ok. Hopefully, we can all find solace and support in sharing our journey with others.


Ep 17 - Angela, SLP

In this world where interactions between your child and other people can be questionable and stressful, it is such a blessing to have therapists and teachers like Angela, someone who genuinely loves and cares for the kids and adults that she works with. I have learned so much about not only my daughter’s speech, but also about navigating the world of special needs and being an influential advocate for my daughter. I hope that you all enjoy this conversation and find wisdom, knowledge and...


Ep 16 - Behavior (part 1 of many)

I am coming to realize a deep part of my work for this time – to better understand Freya, how her brain functions and perceives things, so that I can ease any anxiety, promote positive behavior and help her navigate situations with other children so she can play and interact with them in positive ways. This episode is the first of many explorations on the topic of brain function and behavior. I hope it will be beneficial to other parents and children, not only PWS families.


Ep 15 - Natalie Roberts Mazzeo

You are in the doctor’s office holding your 5-month-old baby, listening to a small string of diagnosis that you have never heard of but somehow relate to your daughter never walking, or talking, or having the fine motor skills for sign language. Would you break? I spoke with, Natalie, a very lovely, strong, and inspiring mother who lived this moment, and willingly shares how she put the pieces back together. She not only tends to her own Radical Acceptance of life in the world of special...


Ep 14 - Caitlyn, Neo-Natal Diabetes

In this episode Caitlyn shares her story, from the traumatic introduction to neo-natal diabetes, to the challenges, frustrations and heart ache of intellectual and developmental delays. We talk about siblings, unknown futures and how she herself finds comfort in this situation. And at the end, Caitlyn even drops some important information for anyone out there who may have been diagnosed with diabetes before the age of 6 months.


Ep 13 - The Grandmas

Since this is the last episode of the month, I thought I would end it with the Grandmas….Freya’s Grandmas. Not only have they known Freya since she was born, but they also both have other experiences with children with special needs. I will admit there is a little bit of doting in this episode, which I think is to be expected from grandparents. But they also speak openly about their other experiences, and offer their advice to grandparents of children with special needs.


Ep 12 - Courtney, a sibling

I had the pleasure of speaking with Courtney, an older sister to Max – an adult with PWS. As an adult Courtney has moved into the role of counselor, dealing with trauma and eating disorders. In out time together she spoke about growing up with a brother with special needs – how it was just a part of their life, learning to adapt, the moment she became his champion, their relationship as adults and how he has been an inspiration to her in her life.


Ep 11 - Emily, PWS Mom

I spoke with Emily Felt, a mother to 6 year-old Olivia with PWS. She talks about how Olivia’s birth and diagnosis affected her, the grief that came from it, and how one session with a therapist helped shift her outlook dramatically. We discuss the frustrations we have with doctor’s feeling like they need to harp on the negative aspects, what needs to be fixed or treated, without the balance of positives – what is working, what is going well. Emily is also in the process of creating...


Ep 10 - Foundation for Prader-Willi Research

Without research and the knowledge gained from this research, most of our kids and adults with Prader-Willi Syndrome would face more difficulties in their lives. Thankfully, with the continued effort of the Foundation for Prader-Willi Research, there are new treatments and understandings of the challenges with PWS. This episode is an interview with Susan Hedstrom, the Executive Director of FPWR and fellow PWS mom. She speaks on the who, what, how and why of FPWR.


Ep 9 - Gen

May is Prader-Willi Awareness Month! This episode is the start of a month long dive into the world of PWS and the ways in which families, doctors and organizations are fighting for the lives of our children. I spoke with Gen, the mother of a young girl with PWS. We share battle stories, tips for success and a few good laughs. This is a conversation between two mamas who have found themselves on similar paths and are trying to figure out which way to hold the map. This conversation is not...


Ep 8 - Laura the Midwife

Laura is a dear friend and local midwife. She was with me through Freya's pregnancy and post-cesarean care. We talk about ways to emotionally process having an unexpected cesarean and the importance of having a chance to bond with your baby before a diagnosis is given, if medically safe that is. Laura tells us of her AskMidwife707 podcast that will be coming out in May, a place for women to share birth stories and information for those interested or invested in midwifery care. She closes...


Ep7 - Take 'em as they come

I began this episode going back to the beginning, trying to fill in some of our story around Freya's infant feeding issues. What came out after was the unexpected and confusing grief I experienced watching my friends' babies grow and do things my daughter could not. Sometimes we are so good at masking and covering strong emotions that we forget they are there, only to have them rise up when we go back and tell our story.


Ep6 - Siblings

The first of many conversation about the effects on siblings of children with special needs. A place to find help, and why we should keep hope.


Ep4 - Diagnosis

This is the story of when we received Freya's diagnosis and how I handled it. I share a poem, "Kintsugi" that I wrote describing the emotions, the turmoil and what we gained from that moment. I close this episode with information on Prader-Willi Syndrome as found on the website pwsausa.org.


Ep 3 - The Time Between

For three and a half months we cared for our baby who was hypotonic, not eating well, sleeping too much and generally not thriving. We did not have answers for why. This episode deals with the fear and heart ache of those months, along with the ways that we coped.


Ep2 - Birth Story

To begin this journey, I tell Freya's birth story, when my desired home birth became a much feared cesarean.


Ep1 - Intentions

In this episode I explain my motivations and intentions for creating this podcast, and how people may get in touch and share their stories.