This conversation begins right in the middle of vulnerability, smack dab in the middle of reflection growth, and healing, and I thought it was a beautiful way to start. For context I’ll tell you that Molly’s sister, Brooke is almost 50 and lives in Michigan. Molly is her younger sister and her guardian living in CA. She grew up in a house where her sister’s disability, or emotions for that matter, were rarely, if ever, discussed. This has sent Molly on a quest to understand the repercussions...

Guy Stephens is the Founder and Executive Director of the Alliance Against Seclusion and Restraint. First we discuss what restraint and seclusion in schools looks like, the origins of behvior in individuals, and the work that AASR does. The heart wrenching part of the episode is the stories of kids who have suffered under these archaic actions. The inspiration is in the work AASR has and still is doing, and the ways that families can seek help or offer it. Please check the show notes for the...

I recently had the fabulous pleasure of attending the United in Hope Convention, hosted by PWSA USA, in Orlando, FL. I had such an amazing time meeting parents I’ve only spoken with over the phone or computer, learned some valuable information to benefit Freya and our family, and was gratefully reminded of what a lovely and suppotive community we have in the PWS world. I also had a freaking blast! I invited two of the organizers, Kristi Rickenback and Angela Frazier, on to talk about the...

I had a lovely talk with a new friend of mine, Hollis. Last Feburary her daughter was diagnoased with 22 learning disabilities. We talked about the pitfalls of testing, getting services, IEPs, curriculum and teaching styles, providing our kids with positive internal dialogue, and Hollis offers safe advice for challenging times. Of course, I weave in some stories of my own into our talk. If anything feels heavy for you at the moment, try to take a deep breath and for the next 30 minutes or so,...

Yes, this is a shameless plug for a new online resource…BREATHE - Bringing Resources, Education, & Advocacy To Homes Everywhere - is a new and growing online space for families of individuals with disabilities and atypical needs. Created by the mother of a daughter with Prader-Willi Syndrome, BREATHE hopes to inspire and educate parents and caregivers on how to include self-care in their lives while offering education and skill-sharing to benefit the development of our loved ones with...

"Elliot is a trans, multiple-disabled and autistic artist, recent college graduate, summer camp counselor, and disability/autism and LGBTQ+ advocate. He is passionate about ensuring better outcomes for disabled, autistic, trans, and gender-expansive young people. His past work has included speaking at a support group for parents of autistic and trans kids, developing a workshop for the Philadelphia Autism Project’s self advocacy series, starting an LGBTQ+ student group at his college, and...

Here's a brief check-in before I put out the newest episode this week!

Lindsay Madsen is a fellow mom on the journey of raising children with special needs, a son with Autism and a daughter with Reactive Attachment Disorder – that was a new one for me. She is also the Director of Special Education at a charter school in Utah and offers her services as a tutor and consultant. We spoke a bit about her children and their unique challenges. We then discussed the need for passionate special education teachers and more school psychologists (I learned about the 45 day...

Our children with disabilities and special needs are at a higher risk for becoming the victims of sexual abuse. To help us navigate, educate, and hopefully prevent this from happening, we have Lindsey Strickland from Worth the Conversation. She has a professional background in victim advocacy for children and families of sexual abuse, along with community education and prevention. After adopting her son with Down Syndrome, Lindsey realized she needed new strategies to educate and advocate....

Cate Fox, a dietitian from Australia, works with PWS families. In this conversation, we talk feeding tubes, macronutrients, complex carbs, the Mediterranian diet, and what Cate has to offer the PWS community. She is a great resource to have on our side so please check out her website at catefoxdietitian.com.

One of the things that continues to amaze and inspire me on this journey of being the parent to a child with special needs, is the incredibly kind and compassionate people we meet along the way. The people who were not brought into this community through the birth of a child, but came here intentionally, with purpose and an enormous heart. * Patrice Carroll is the director of PWS services for both children and adults at Latham Centers. Patrice, co-chair of the PWSA (USA) Professional...

Emily Felt is a friend I have made on this journey with PWS. We first met in person in the cafeteria of UCSF. She and her daughter Oli drove from Davis to meet Freya and I before an appt. As you’ll hear, we both value our relationships, strive for gratitude and a healthy positivity, and believe in the importance of building community. She’s been on the podcast a few times and always brings an enlightening freshness and beautiful sentiments to the conversation. We spoke about some practical...

We Are Brave Together Founder and fellow PWS Mom, Jessica Patay, spoke with me about her family’s experience on the journey with PWS. Her son Ryan is soon to be 18. Jessica shared a bit about what is next for their family and how families might choose to legally approach this milestone. We also spoke a lot about the sibling experience, how our children can be affected by the attention required by our child with PWS and the restrictions on food and kitchen use that can affect the entire...

I would imagine that most of us in the PWS world have now heard of FPWR – the Foundation for Prader-Willi Research. If you haven’t, this episode is a great start. I spoke with Executive Director, Susan Hedstrom, to learn more about FPWRs foundation, intention, and actions. I also learned how families can participate in clinical trials, creating a One Small Step fundraiser, and the importance of the Global Registry. If someone you love has PWS, I highly recommend learning more about FPWR and...

May is Prader-Willi Awareness Month! Woohoo! To honor this, and help grow and strengthen an already strong, supportive community, I have created a social media challenge. This quick episode is an on the fly explanation of the challenge and how you, a parent, caregiver, or care provider to someone with PWS, can participate. Please follow @walkingwithfreya on IG or join the FB group @PWSCommunityChallenge to participate! I look forward to meeting you all there!

Dr. Roseann Capanna-Hodge is an Integrative and Pediatric Mental Health Expert and trailblazer, the founder of The Global Institute of Children’s Mental Health and Dr. Roseann & Associates, and is “Changing the way we view and treat children’s mental health”. FORBES magazine called her, “A thought leader in children’s mental health”. Her work has helped thousands reverse the most challenging conditions, such as ADHD, anxiety, mood, autism, learning disability, Lyme, and PANS/PANDAS using...

Jimmy Clare is a motivational speaker, Autism advocate, and creator of the Crazy Fitness Guy website and host of the podcast, “Crazy Fitness Guy, Healthy Living Podcast” He describes himself as “slightly autistic” and sees his position as a bridge between worlds. In this episode, Jimmy talks about bullied in school and how he eventually found the confidence and strength to stand up to his bullies. We talk about some signs of bullying and what parents can do if they find that their child is...

Erica Bowen spent much of her career in violence prevention. She is a registered Forensic and Coaching Psychologist and the Imagineer of The Hope-Makers Limited, coaching for social entrepreneurs and now a podcast. We discussed some of the knowns and unknowns about domestic violence, both within the special needs community and without. Erica talked about some signs to watch out for or patterns to notice, and then we discussed the very real and alarming increase in domestic violence cases with...

Annie Treml grew up the older sibling to a sister with autism and an intellectual disability. She is a former school psychologist, counselor, and college instructor and now uses her education and her experience to help families find connection among the chaos so that everyone’s needs are met. Anne shared with us sweet details about her relationship with her sister and then spoke frankly and without judgment about the typical ways that siblings may feel and react to having a child with a...

Katie and Steve’s special needs journey began when their first baby had to be airlifted to another country shortly after birth because of a stroke in utero. Seventeen years and four more children later, one with the diagnosis of Dup15q, they are now vocal advocates and support in the special needs community. Their new podcast, Family Success Secrets, has recently launched. This podcast is a spin-off from their original podcast specifically for the special needs community Generationally...

I have such a great episode for you today. Marie Fraser is a Self-Confidence and Re-Invention Coach and creator of “Bounce Back After Break-Up.” She came onto the podcast to talk with me about raising her son, soon to be 24, who was diagnosed at 1 with Cerebral Palsy. We talked about the grief that comes from receiving a diagnosis, letting go of the expectations as parents, and finding happiness in the new ones. Marie is a single parent and strongly emphasizes the importance of advocacy and...

I had the absolute pleasure of interviewing father, advocate, author, and, I learned, fantastic storyteller, TJ Nelligan. He wrote the book Live Like Sean, Important Life Lessons from my Special-Needs Son. Some of the lessons TJ mentions have really stayed with me. Being present in the moment. Being friendly to everyone. Showing genuine concern for those around you. Ways most of us know we should behave and interact with our fellow humans but sometimes get lost in the chaos of adulting in...

So I’m dusting off my microphone, refamiliarizing myself with this podcast world, gathering a list of guests to interview, and diving back into Walking with Freya. I’ve had a bit of a hiatus and I apologize to anyone who may have felt the loss of this, but I’m sure you all were fine. There are so many podcasts for the special needs community out there now, it really is a strong and growing community which is a beautiful thing. So a few reasons I took a break… 1. I bet that’s easy enough...

Math Professor and author of two math strategy books, Allison Dillard, spoke with me about how to raise a math person. With over 20 years experience tutoring and teaching math, Allison had some great tips and strategies for parents whose kids struggle with math. We spoke about math anxiety, common core, motivation, learning differences, and when to get a tutor. This episode is an inspiring and positive start to the new math year! More from Allison can be found at allisonlovesmath.com.