Walking with Freya Anne Fricke

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 of being left out of the conversation. While grief and emotional suffering have been a part of her journey, she is finding her way to connection, growth and healing, and it is beautiful to witness.

In the middle of this all, there is also some great information on what guardianship looks like and one approach to caring for an adult with PWS and the logistics around that. And of course, wise advice for parents on how to raise siblings alongside a child with PWS.

For those interested in poetry, especially poetry about parenting a child with disabilities, there is a special treat at the end of the conversation. Find the link to my new poetry collection, "Victory Garden", in the show notes.

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 link tree to reach out the the organization, support their cause, buy merch, listen to the podcast and more. I found this episdoe to be incredibly enlightening and plan to share it widely to spread the word. I hope you will do the same.

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 conference, what was offered, how it went, and what we can look forward to in the future.

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, take Hollis’s advice and let that sh*t go.

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 disabilities. With downloadable classes, resource links, free content, story sharing, and interactive community space, BREATHE strives to help families and caregivers in the disability community breathe a little easier. 

In this episode I talk about BREATHE and what you’ll find there, but I also get a bit personal about Freya and what she’s been going through, and why I won’t be discussing her publicly so much any more. I’m ready to go deep with parents and siblings again, so please send me an email if you’re up for having a conversation with me for this podcast.

"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 working with faculty and administrators at his college to better support queer students and meet the needs of the  neurodiverse student body.”

Elliot and I talk about the language we use, misconceptions of the transgender journey (no, they’re not putting children on hormones), the importance of kids exploration, how autism affected his journey, the common developmental stages in which people want to explore or define gender, mental health, advice for parents and teens, and the importance of affirmation for postive mental health and suicide prevention.