Ep 87: Vulnerability and Healing with Molly, a Sibling

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.

Ep 86: Alliance Against Seclusion & Restraint with Guy Stephens

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.

Ep 85: United in Hope PWS Convention Wrap-Up

I recently had the fabulous pleasure of attending the United in Hope Conference, 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.

Ep 84: Let that Sh*t Go, with Hollis

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.

Ep 83: BREATHE

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.

Transgender and Autism with Elliot

"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.

Ep81: Special Education, COVID, and BINGO with Lindsay Madsen

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 rule – which I’ve probably been told before but this time it stuck!), the importance of having support, and COVID’s affect on our children with special needs. Lindsay sends us off into summer with great advice on how to process this past year and how to prepare for the next school year (hint: it involves BINGO!)

Ep 80: Worth the Conversation with Lindsey Strickland

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. She spent some time researching and eventually created Worth the Conversation, dedicated to “equipping the Down Syndrome community to prevent child sexual abuse through education and empowerment.” To be clear, the conversation we had for this podcast applies to children of all needs, however unique and challenging. 

We began our conversation clarifying what sexual abuse may look like. I certainly learned something new about that, or at least had my eyes open to some things I hadn’t really thought about. Lindsay went over some of the big risk factors for our children and then helped walk me through some of the prevention strategies she shares. All of this information and more can be found on her website at worththeconversation.org. We also discussed what signs to watch out for that may be the result of abuse and what actions to take if you suspect anything. 

Talking about child sexual abuse is not an easy conversation to have, but it is one of the most important ones to have. Our children are undoubtedly worth it. 

Ep78: Prader-Willi Strong with Latham Centers

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 Providers Board as well as a member of the International Prader Willi Syndrome Organisation Professional Providers and Caregiver’s Advisory Board and has over 20 years of experience working with children and adults diagnosed with PWS.

Katrina Fryklund Started at Latham Centers in 2013 as Development Associate, and was promoted to Director of Development. She is now a member of the Admissions team as Director of National Outreach.

Brittni Kliment is Director of Program Marketing and Admissions. She started at Latham Centers in 2012 as a classroom teacher. She quickly became the Assistant Principal, and then Director of Education, serving as an administrator while working with the students.

In 2020, during COVID-19, Patrice, Katrina, and Brittni created and currently facilitate a PWS Virtual Community to strengthen relationships for individuals with PWS around the world.

Ep77: PWS Strategies and Gratitude with Emily Felt

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 logistics in raising a child with PWS—having clear boundaries, food safety in social situations and home, anxiety and how it manifests (like perseveration, skin picking, and food obsessing), and strategies for managing the anxiety and accompanying behavior. Here’s a clue, empathy is a great start!

Emily also talked about the importance of gratitude and ways to bring more into your daily life and the life of your family. 

Ep76: PWS, Siblings, and Family with Jessica Patay

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 family. Jessica also talked about the importance of time for everyone, therapy, and making sure siblings know that they have a voice and need to use it. She has some great advice, learned from experience, for families who are in the earlier stages of their journey with PWS.

Jessica is an important advocate for mothers, and I would say for siblings as well, and really lets us in on some important wisdom. She is open with her story and empathetic to other’s experiences. It’s always such a pleasure to speak with her. You can hear more of her on her own podcast, Brave Together Podcast.

Ep75: FPWR with Susan Hedstrom

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 how you can help raise money and awareness.  You can learn more about FPWR at fpwr.org.

Ep74: PWS Community Challenge for PWS Awareness Month

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!

Ep73: "It's Gonna Be Ok!" with Dr. Roseann Capanna-Hodge

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 proven holistic therapies such as neurofeedback, biofeedback, and psychotherapy. She is the author of the first-ever book on teletherapy activities for child and adolescent therapists, “Teletherapy Toolkit™: ” and The Get Unstuck Program™.

Her new book, “It’s Gonna Be OK™”, comes out May 11. For thirty years, Dr. Roseann has been helping families reduce and reverse mental health symptoms with PROVEN natural therapies that are safe and effective, and with this book, you will learn the step-by-step way to help your child be focused, calm, and regulate their mood and behavior.

This episode is packed with inspiring information. What we can do with nutrition and meditation alone offers so much hope!

Ep 72: Autism, Bullying, Advocacy with Jimmy Clare

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 experiencing this. One of the lessons he hopes people learn from his story is to dispel the negative myth that Autism is a disease that needs to be cured.

Jimmy is on roughly 25 social media platforms so the easiest way to learn more about him and his work is to visit crazyfitnessguy.com

71: Domestic Violence, Hope-Makers, and Erica Bowen

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 the onset of the pandemic. We spoke about how to help protect our children and the importance of having the right conversations about healthy relationships. We closed off this episode on a more positive note, the topic of hope, and Erica’s coaching work, and her new podcast, The Hope-Makers.

70: Sibling Connections with Annie Treml

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 connections 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 disability or atypical needs in the family. She offered advice on how to start the much-needed conversations around everyone’s experiences and how to prepare our children for the responsibilities of caretaking once the parents are no longer around. I’ll give you a hint, as Annie says, “It doesn’t have to feel heavy.”

If you’re interested in learning more about Annie and the work that she does with families, you can visit her website at annietreml.com.

Links:

Schedule your FREE Breakthrough Session with Annie: https://annietreml.hbportal.co/schedule/60233c06a08cc51975829f2e

Free Gift (Opt-in): “3 Harmful Lies Siblings of Children w/Special Needs Tell Themselves...and How to Fix It!”  www.annietreml.com/guide

Facebook group: https://www.facebook.com/groups/thespecialneedsfamilysociety

Facebook page: https://www.facebook.com/AnnieTremlConnects

Linkedin: https://www.linkedin.com/in/annie-treml/

Instagram: @annietremlconnects

69: Family Success Secrets with Katie and Steve

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 Minded. Family Success Secrets is a place for all families to learn, grow, and be supported.

They spoke with me about their experiences as a special needs family, their son’s diagnosis, how they built their team, how to be an advocate for your child, and the need to find creative solutions for our children. We also discuss their new podcast venture and the intention behind it.

You can find more about Katie and Steve’s podcast at podcast.familysuccesssecrets.com for updates about their episodes. You can also join their FB page at Family Success Secrets, and follow them on IG under the same.