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I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called USP7. She's different. And now, so is everything else. #USP7 #autism

Bo Bigelow


    • Jun 4, 2025 LATEST EPISODE
    • weekly NEW EPISODES
    • 11m AVG DURATION
    • 360 EPISODES

    5 from 81 ratings Listeners of Portland Roots Media that love the show mention: bo's, bigelow, child with special needs, tess, special needs kids, special needs child, little girl, stronger, stay at home, blogs, heartwarming, poignant, raising, parenting, well told, parents, sensitive, adventures, humorous, caring.


    Ivy Insights

    The Portland Roots Media podcast is a fascinating and informative show that covers a wide range of topics. Hosted by knowledgeable and engaging hosts, this podcast offers in-depth analysis and discussions on current events, social issues, and local news in the Portland area. Whether you are a resident of Portland or just interested in learning more about the city, this podcast provides a unique perspective that is both entertaining and educational.

    One of the best aspects of The Portland Roots Media podcast is the diverse range of topics covered. From politics to culture to environmental issues, there is something for everyone in each episode. The hosts do an excellent job of presenting different viewpoints and fostering thoughtful conversations. They also bring on expert guests who provide additional insight and expertise on various subjects. This variety keeps each episode fresh and ensures that listeners are constantly engaged.

    Another standout aspect of this podcast is the high production value. The audio quality is top-notch, making it easy to listen to and follow along with the discussions. The hosts have a great rapport with each other and their guests, which adds to the overall enjoyment of the show. Additionally, the show's format allows for deep dives into topics while still being accessible to listeners who may not be familiar with every subject discussed.

    While there are many positives about The Portland Roots Media podcast, one potential downside is that some episodes can be quite lengthy. While this allows for thorough exploration of certain subjects, it may be difficult for listeners with limited time to fully engage with longer episodes. However, the wealth of information provided in these longer episodes can make up for their length.

    In conclusion, The Portland Roots Media podcast is a must-listen for anyone interested in staying informed about local news and social issues in the Portland area. With its diverse range of topics, engaging hosts, and high production value, this podcast stands out as a valuable resource for listeners wanting to learn more about their community.



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    Latest episodes from Portland Roots Media

    SED 542: What Tess Carries with Her

    Play Episode Listen Later Jun 4, 2025 8:09


    Today we're talking about a few of Tess's favorite objects.

    SED 541: I Will Not Behave and I Will Not Be Nice

    Play Episode Listen Later May 28, 2025 5:11


    Today we're talking about unhappy Tess. Annoyed Tess. And the mysteries of it all.

    SED 540: A New Kind of IEP

    Play Episode Listen Later May 21, 2025 10:20


    Today I'm gonna tell you about Tess's most recent IEP meeting and something we talked about for the first time in her education.

    SED 539: Growth in Slo-Mo

    Play Episode Listen Later May 14, 2025 6:25


    Today I'm gonna tell you about Tess's growth and some new clothes.

    SED 538: Spring and a New Presence

    Play Episode Listen Later May 7, 2025 4:30


    Today I'm gonna tell you about a new person who's entered Tess's life.

    SED 537: How It Actually Went Down in Montreal

    Play Episode Listen Later Apr 30, 2025 8:29


    Today I'm gonna give you the post-voyage report about Tess in Montreal.

    SED 536: Tess in Montreal

    Play Episode Listen Later Apr 23, 2025 8:45


    Today we're gonna talk about Miss Tess's travel to the nation of Canada. This isn't a bunch of tips and tricks about how to travel with someone who has autism. BUT if that's what you're looking for, check out: SED 507 - Traveling with Autism: 14 Essential Hacks for a Smoother Journey Part 1 of 2SED 508 - Traveling with Autism: 14 Essential Hacks for a Smoother Journey Part 2 of 2

    SED 535: Tess Gets Sent Home Sick

    Play Episode Listen Later Apr 16, 2025 7:40


    Today we're talking about Tess being sick recently.

    SED 534: Tooth or Consequences

    Play Episode Listen Later Apr 9, 2025 10:02


    Today we're gonna talk about Miss Tess's recent visit to the dentist.Many thanks to the New York Times for writing about dental patients with disabilities back in 2019, and NYU's new facility designed to help them: "Saving the Teeth of Patients with Special Needs," by Catherine St. Louis, 5/2/2019.

    SED 533: Zero Turnovers

    Play Episode Listen Later Apr 2, 2025 7:12


    Today we're talking a bit more about basketball and what it means to Tess.

    SED 532: More Talking Without Words

    Play Episode Listen Later Mar 26, 2025 11:07


    Today we're gonna talk more about the podcast The Telepathy Tapes and how it applies to our Tess.

    SED 531: This Will Be Our Year

    Play Episode Listen Later Mar 19, 2025 9:08


    More patients found! Not one but TWO groundbreaking scientific projects underway! And a new paper that could contain the key to our cure—something that might even be in your medicine cabinet. Today I'll be giving you an update on some of the thrilling developments of our foundation in our quest for a cure for Tess and the other patients.

    SED 530: Dunk You Very Much

    Play Episode Listen Later Mar 12, 2025 8:44


    Today I'll be telling you more about Tess playing basketball, and a new development for her on the court.

    SED 529: Talking Without Words

    Play Episode Listen Later Mar 5, 2025 10:50


    Today I'm talking about the ability to read minds. And how it might affect our relationship with Tess. I've been listening to The Telepathy Tapes, a podcast by Ky Dickens about how certain nonspeaking people with autism have displayed the ability to read minds.

    SED 528: Pizza Vacuum

    Play Episode Listen Later Feb 26, 2025 9:30


    Today we're talking about an irksome behavior of Tess's, something that's happening more and more frequently, and what it could mean.

    SED 527: Why I'm Changing the Show Back

    Play Episode Listen Later Feb 19, 2025 10:05


    SED 527: Why I'm Changing the Show BackLast summer, I made a big change to this show. Now, I'm changing it back. In this episode, I share why—and how a recent ski day with Tess, in zero-degree weather, reminded me of something important. Tune in to hear the full story.

    Stronger Every Season: A Caregiver's Mindset Shift

    Play Episode Listen Later Feb 12, 2025 5:20


    Stronger Every Season: A Caregiver's Mindset ShiftWhat if the way you think about aging is making caregiving even harder?If you're a caregiver, you know the toll it can take on your body—aching muscles, exhaustion, and the creeping fear that one day you just won't be able to do it anymore. But what if there's a different way to look at it? A mindset shift that keeps you strong, capable, and even optimistic?Discover how changing your perspective on physical decline can make a huge difference in caregiving.Learn how building a personal ‘support team' can keep you strong and resilient.Get inspired by a powerful reframe that turns dread into determination.Hit play now to hear a short but game-changing episode about staying strong, shifting your mindset, and bringing the heat—season after season.

    Max Flex: The Rare-Disease Parent's Superpower for Navigating Uncertainty

    Play Episode Listen Later Feb 5, 2025


    Max Flex: The Rare-Disease Parent's Superpower for Navigating UncertaintyHow do you keep going when rare-disease parenting constantly upends your plans?If you're raising a child with a rare disease, you know that unpredictability is the norm—canceled plans, last-minute doctor visits, and constant pivots can feel exhausting. In this episode, we explore why these disruptions hit so hard and how a simple mindset shift can help you regain a sense of control.Understand why rare-disease parenting makes traditional planning so difficult—and what to do about it.Learn a new way to approach daily schedules that reduces frustration and stress.Discover how embracing "Max Flex" can help you feel more confident and prepared, no matter what comes your way.Listen now to learn how rare-disease parents can build a mindset that turns constant disruptions into opportunities for strength and adaptability.

    Stepping Forward: How Shoes and Therapy Transformed Tess's Confidence

    Play Episode Listen Later Jan 29, 2025 9:35


    Stepping Forward: How Shoes and Therapy Transformed Tess's ConfidenceWhat if a simple tweak in your child's footwear or a new approach to therapy could drastically improve their confidence and mobility?For parents of children with rare diseases, finding solutions to challenges like mobility and physical discomfort can feel overwhelming. In this episode, you'll learn how small adjustments can lead to significant progress, helping your child feel more secure and thrive in their daily life.Discover a groundbreaking physical therapy technique that could change how your child moves and feels.Learn how specific shoes can impact your child's stability, confidence, and overall comfort.Gain actionable insights into ways you can support your child's mobility and independence at home.Hit play now to uncover simple, practical changes that can transform your child's mobility and confidence starting today!

    Creative Workarounds for Extraordinary Challenges: Life with Tess

    Play Episode Listen Later Jan 22, 2025 12:18


    Creative Workarounds for Extraordinary Challenges: Life with TessHave you ever had to outsmart someone who seems to have superhuman strength and an endless appetite?If you've ever faced the challenge of keeping your home safe for a loved one—or if you're simply curious about creative problem-solving—this episode is for you. Discover how we navigate safety challenges for our 15-year-old daughter Tess, who has unique needs that go far beyond the toddler-proofing most families rely on.Learn about ingenious solutions we've devised to manage Tess's bedroom, bathroom, and kitchen safety.Understand the complexities of hyperphagia and why typical safety measures often fall short.Be inspired by real-life examples of persistence, adaptation, and the realities of parenting someone with extraordinary needs.Hit play now to hear practical tips, unexpected stories, and a call for your ideas—because we're all in this together.

    Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 2 of 2

    Play Episode Listen Later Jan 15, 2025 12:50


    Have you ever been told you're wrong about your child's needs, only to trust your gut and be proven right?If you're a parent of a child with cortical visual impairment (CVI), navigating medical appointments and creating a supportive environment can feel overwhelming. This episode dives into a real-life journey of overcoming dismissal from professionals and finding clarity and solutions for CVI.Learn how to advocate effectively for your child, even when faced with skepticism from experts.Discover practical strategies to create a CVI-friendly environment that fosters improvement.Get a list of book recommendations tailored to children with CVI to make reading more engaging.Press play now to gain insights and actionable tips that can transform how you support your child with CVI!Mentioned:Milwaukee artist and author Lois Ehlert, creator and writer of Fish Eyes and Circus Luminous, by Julia Kuo

    Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2

    Play Episode Listen Later Jan 8, 2025 11:39


    Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2What happens when a medical professional dismisses your concerns about your child's health? How do you move forward when you're made to feel like you're imagining things?If you're a parent of a child with a rare disease, you've probably faced moments of disbelief from others—especially from those you trusted to help. This episode dives into one such experience, sharing practical insights on how to navigate this emotional and isolating journey while advocating for your child.Learn how to recognize the signs of cortical visual impairment (CVI) and why early identification matters.Discover strategies to manage the emotional toll of feeling dismissed or gaslit as a rare disease parent.Gain actionable tips for building resilience and finding allies who truly listen and care.Hit play now to hear this week's episode and equip yourself with tools to advocate for your child, even when the system feels stacked against you!

    The Power of Accepting Help: A Farewell to Shawdiya

    Play Episode Listen Later Jan 1, 2025 7:01


    Have you ever struggled with the idea of asking for help--feeling like you need to power through alone? What if embracing help could transform your family's well-being?This week's episode explores a challenge many of us face: letting go of the belief that we must do everything ourselves. Whether you're a parent, caregiver, or just navigating life's demands, accepting help can unlock balance and peace. Discover how this mindset shift has impacted our family, especially through the support of an incredible BHP, Shawdiya, who has been a cornerstone of our lives for over four years.-Learn why accepting help isn't a weakness but a strength that benefits your entire family.-Hear a heartfelt story about Shawdiya and the deep connection she built with our daughter Tess over the years.-Get practical insights into showing gratitude and fostering lasting relationships with those who support you and your family.Hit play now and discover how letting others step in can lead to a happier, healthier life for you and your loved ones!

    Unlocked: Tess's Midnight Adventure and the Lessons It Taught Us

    Play Episode Listen Later Dec 25, 2024 7:28


    Unlocked: Tess's Midnight Adventure and the Lessons It Taught UsHave you ever woken up in the middle of the night to a situation so surprising, it leaves you both laughing and shaking with relief?For families dealing with conditions like pica and hyperphagia, everyday routines can turn into unpredictable adventures. This episode dives into a real-life story of Tess's nighttime escapade and explores how these conditions impact not just her safety but also her family's peace of mind.- Discover what happened during Tess's late-night piano performance and how her family managed the aftermath.- Learn about pica and hyperphagia, two conditions that require constant vigilance, and how they connect to Tess's rare disorder.- Gain insights into how families implement creative safety measures and what happens when those defenses fail.Hit play now to hear this unforgettable story, understand the stakes of living with pica and hyperphagia, and come away with a new perspective on resilience and love.

    Turning the Tables: How to Face Evaluations and Advocate for Your Child

    Play Episode Listen Later Dec 18, 2024 12:07


    Turning the Tables: How to Face Evaluations and Advocate for Your ChildHow do you handle evaluations when every question feels like a punch to the gut, and the evaluators hold all the power over your child's future?If you're a parent of a child with a rare disease, evaluations can feel like a never-ending series of heartbreaks and hurdles—whether it's for early intervention, an IEP, or critical funding like Medicaid. But what if you could reframe these evaluations as tools to help your child thrive?In this episode, you'll discover:How to answer tough evaluation questions without heartbreak.How to shift your mindset and see evaluations as opportunities, not obstacles.How to advocate effectively, ensuring your child gets the resources and support they need.Don't let evaluations control your journey--hit play now to learn how to turn the tables and use these tools to set your child up for success.

    Burnout Busters: How Caregivers Can Find Energy and Connection Outside the Home

    Play Episode Listen Later Dec 11, 2024 9:31


    Burnout Busters: How Caregivers Can Find Energy and Connection Outside the HomeFeeling burned out as a caregiver? What if the simple act of leaving your house could be the key to restoring your energy and creating meaningful connections?If you're juggling endless tasks like medical appointments, therapy sessions, and daily care for your child with a rare disease, burnout might feel inevitable. But in this episode, you'll discover how small changes in your routine can help you overcome that soul-crushing fatigue while fostering a sense of community for you and your child.Here's what you'll gain from listening:Insight into why caregivers experience burnout and how to recognize the warning signs.A simple yet powerful strategy to prevent burnout and feel more connected to the world around you.Heartwarming examples of how building relationships in your local community can benefit both you and your child.Hit play now to learn how a quick outing can transform your day, energize your spirit, and help you and your child feel more connected.

    Filling Your Bucket: Stress-Free Holidays for Rare Disease Families

    Play Episode Listen Later Dec 4, 2024 16:15


    Filling Your Bucket: Stress-Free Holidays for Rare Disease FamiliesAre the holidays leaving you feeling drained instead of joyful?For parents of children with rare diseases, the holiday season often amplifies stress, disrupts routines, and makes it hard to enjoy quality time. This episode tackles these challenges head-on, offering actionable tips to help you turn the season into one that restores and uplifts you.Discover unconventional ways to approach holiday gift-giving that reduce stress and bring genuine joy.Learn quick and easy Amazon shopping hacks to save time and money during the busy season.Master the mindset shifts and planning strategies that can help you reclaim peace and balance, even when routines are upended.Listen to this episode now and equip yourself with simple, game-changing tools to make this holiday season the most fulfilling one yet.My Facebook fundraiser is here or you can donate hereOn Every: Michael Ashcroft's article How to Make Unfixated Choices

    Uncharted Territory: ADHD, Rare Disease, and the Struggles with Medication

    Play Episode Listen Later Nov 27, 2024 11:19


    Uncharted Territory: ADHD, Rare Disease, and the Struggles with MedicationWhat happens when your child with a rare disease reacts unpredictably to a medication meant to help them focus and thrive?In this episode, we explore Tess's journey with ADHD, rare disease, and her unexpected reaction to a new medication—highlighting the complex realities of balancing treatments and unknowns. Whether you're a parent navigating similar challenges or a caregiver seeking insights, this episode is for you.Understand the complexities of combining anxiety and ADHD treatment with rare disease care.Learn why it's crucial to monitor your child's response to new medications.Gain reassurance that you're not alone in facing these unpredictable parenting challenges.Press play to hear this heartfelt episode and gain practical advice for navigating the uncharted territory of rare disease parenting.ALSO: I'm launching a mobile app to help men connect with each other. The idea is to see our friends more often, and make new friends, too. More information is available here.

    Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting

    Play Episode Listen Later Nov 20, 2024 8:30


    SED 514: Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease ParentingWhat would you do if your child faced anxiety so intense it disrupts their daily life, paired with impulsivity and struggles with focus?In this episode, we dive into Tess's journey with anxiety, impulsivity, and executive function challenges—issues that may resonate with many parents navigating similar struggles. Learn about how we're uncovering the roots of these behaviors and seeking effective strategies to help Tess thrive.Discover how anxiety and attention challenges can compound care complexities for children with rare conditions.Learn about the tools and assessments we're using, like the NICHQ Vanderbilt Scale, to better understand these behaviors.Gain practical insights for managing impulsivity and staying resilient as a caregiver.Hit play now to hear this heartfelt first part of Tess's story and take away valuable tips to support your own caregiving journey. ALSO: I'm launching a mobile app to help men connect with each other. The idea is to see our friends more often, and make new friends, too. More information is available here.

    Breaking Through Isolation: Finding Connection as a Rare Disease Parent

    Play Episode Listen Later Nov 13, 2024 15:14


    Breaking Through Isolation: Finding Connection as a Rare Disease ParentHave you ever felt isolated, like no one around you understands the unique struggles you're facing? For parents of children with rare diseases, this feeling can be a daily reality.In this episode, you'll learn how to break through the walls of isolation that can accompany raising a child with a rare disorder. Whether it's the stares, the silence, or the disconnection from friends, Bo Bigelow opens up about the challenges and offers insights to help you find connection and community in unexpected places.1. Discover practical ways to shift your mindset and bring supportive people into your life.2. Hear about the new project designed to tackle social isolation for rare disease parents and others.3. Learn why vulnerability with the right people can be a powerful tool for building meaningful connections.Press play to learn how to create a circle of support and begin tackling the isolation of rare disease parenting.Man Park from SNLINTRODUCING my new project PopOut - a mobile app for men to schedule walks and other meetups. Coming soon to a city near you. DONATE | MERCH | WAITLIST | INSTAGRAM

    Refuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease Parents

    Play Episode Listen Later Nov 6, 2024 14:37


    Refuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease ParentsEver feel like you're running on empty, with no time to refuel? What if you could recharge without needing hours to yourself?As a parent of a child with a rare disease, you're constantly on the go, but neglecting self-care can leave you feeling drained and unable to give your best. In this episode, we address this challenge with real-life strategies for reclaiming even the smallest moments for yourself.By tuning in, you'll discover why prioritizing self-care is essential for your wellbeing, simple but powerful ways to manage stress and cortisol, and how brief, consistent habits can transform your energy and focus.Take a few minutes to start building your recharge routine—listen to the episode now to reclaim your energy without sacrificing precious time. NSDR (Non-Sleep Deep Rest) with Andrew Huberman on YouTube

    Building Your Child's Dream Team: Navigating Therapies for Rare Diseases

    Play Episode Listen Later Oct 30, 2024 15:29


    Building Your Child's Dream Team: Navigating Therapies for Rare DiseasesAre you feeling overwhelmed by the countless therapies and appointments involved in caring for your child with a rare disease?In this episode, we'll discuss practical solutions to the complex challenges parents of children with rare disorders face, from managing occupational, physical, and speech therapies to building a team that truly supports your child's unique needs.-Learn how to maximize the benefits of essential therapies like OT, PT, and speech for your child.-Discover how to create a “dream team” of therapists and specialists who are fully invested in your child's progress.-Gain the mindset tools necessary for collaborating with your child's therapy team without feeling overwhelmed.Hit play now to find out how to ease the heavy load of caregiving while ensuring your child gets the best possible support!

    Stronger Together: Aligning with Your Partner on the Rare Disease Journey

    Play Episode Listen Later Oct 23, 2024 16:37


    Stronger Together: Aligning with Your Partner on the Rare Disease Journey Are you and your partner truly aligned when it comes to supporting your child with a rare disease, or are you struggling to get on the same page?This episode dives into a common but unspoken challenge many parents face: navigating a complex healthcare journey with your partner while maintaining your relationship. If you're feeling isolated, overwhelmed, or unsure how to stay united under the strain of constant caregiving, this episode offers clarity and hope.Discover why getting aligned with your partner about your child's rare disease is crucial for both your family's well-being and your own peace of mind.Learn practical strategies for making time to reconnect with your partner amidst the chaos of caregiving.Hear real-life stories and actionable advice on how to overcome common pitfalls that strain relationships in families dealing with rare diseases.Tune in now to find out how you can strengthen your relationship and work as a team while managing the challenges of rare disease caregiving!

    Tech Solutions for Easier Communication: Helping Your Neurodiverse Child Express and Self-Soothe

    Play Episode Listen Later Oct 16, 2024 16:33


    Have you ever struggled to find the right tech tools to help your neurodiverse child?Managing the complex needs of a child with a rare disorder can feel overwhelming, especially when it comes to communication. This episode dives into the use of technology to simplify your life, helping your child express themselves and soothe during sensory overload.-Learn about different communication devices and techniques that can improve how your child communicates with you and others.-Discover a free, customizable resource you can create to help calm and soothe your child in any environment.-Gain practical insights into building a free, personalized playlist of sounds and videos that work for your child's specific needs.Don't miss out—listen now to equip yourself with easy-to-implement tools that can make a real difference for you and your child!

    Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2

    Play Episode Listen Later Oct 9, 2024 9:17


    Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze?Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overwhelming. This episode is filled with practical strategies that address the difficulties you face on the road, from getting power and internet to breezing through rental car lines.- Adjust your mindset about power and internet, so you're ready for anything when you need to get work done on the road.- Learn about two travel programs that can save you time and money.- Hear about a special kit that I designed to optimize sleep for your whole family when you're away from home.Tune in now and get the hacks that will transform your next travel experience into a calm and enjoyable adventure!

    Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 1 of 2

    Play Episode Listen Later Oct 2, 2024 15:24


    Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 1 of 2Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze?Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overwhelming. This episode is filled with practical strategies that address the difficulties you face on the road, from managing long car rides to breezing through airport security.- Discover two easy steps to prepare for a smoother trip, no matter what obstacles arise.- Learn about a little-known service that can turn stressful airport experiences into a worry-free process.- Get recommendations for budget-friendly travel products that ease your journey, from driving to flying.Tune in now and get the hacks that will transform your next travel experience into a calm and enjoyable adventure!How to Personalize Apple Headphones Using the Mimi Hearing Test App:https://mimi.io/how-to-personalize-apple-headphones-using-the-mimi-hearing-test-app

    Unlocking Tess's Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2

    Play Episode Listen Later Sep 25, 2024


    Unlocking Tess's Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2Have you ever wondered how the right diet could drastically improve your child's health, especially if they're dealing with complex medical conditions?For parents of children with rare diseases, balancing nutrition while managing symptoms like GERD and eczema can be overwhelming. In this episode, I dive into how we've customized Tess's diet over the years, using scientific research to guide our choices and making practical tweaks to keep her feeling her best.1. Learn how specific foods, backed by scientific studies, can help manage common symptoms like reflux and inflammation.2. Discover which simple dietary adjustments can improve digestion and prevent food sensitivities from disrupting daily life.3. Get practical advice on using nutrient-dense foods and healthy fats to keep your child satisfied and energized longer.Don't miss out on these essential tips--play this episode now and start optimizing your child's diet today!SCIENCE! "Gluten and FODMAP Relationship with Mental Disorders: A Systematic Review" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8228761/Aranburu E, Matias S, Simón E, Larretxi I, Martínez O, Bustamante MÁ, Fernández-Gil MDP, Miranda J. Gluten and FODMAPs Relationship with Mental Disorders: Systematic Review. Nutrients. 2021 May 31;13(6):1894. doi: 10.3390/nu13061894. PMID: 34072914; PMCID: PMC8228761."Vegan Diet and Dermatology: A Review" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10531971/Lee H, Sim N, Fotouhi A, Daveluy S. Vegan Diet in Dermatology: A Review. J Clin Med. 2023 Sep 6;12(18):5800. doi: 10.3390/jcm12185800. PMID: 37762741; PMCID: PMC10531971."Dietary Habits and Their Impact on Gastroesophageal Reflux Disease (GERD)" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11347905/Khan M, Shah K, Gill SK, Gul N, J JK, Valladares V, Khan LA, Raza M. Dietary Habits and Their Impact on Gastroesophageal Reflux Disease (GERD). Cureus. 2024 Jul 27;16(7):e65552. doi: 10.7759/cureus.65552. PMID: 39192902; PMCID: PMC11347905.

    Unlocking Tess's Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2

    Play Episode Listen Later Sep 18, 2024 9:07


    Unlocking Tess's Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2Have you ever wondered if a simple change in diet could dramatically improve your child's cognitive function and overall health?As a parent of a child with a rare genetic disorder, you've likely faced numerous challenges in managing their symptoms. This episode shares a real-life story of how a specific diet helped address multiple issues, from eczema to cognitive awareness.1. Learn about the diet that transformed Tess's life by improving her skin, GI symptoms, and cognitive engagement.2. Discover the step-by-step process of eliminating certain foods and the remarkable effects it had on a child with rare disease.3. Gain practical insights into how dietary changes can positively impact other children facing similar challenges.Hit play now to hear how a simple dietary adjustment changed everything for Tess and how it could benefit your child's health too!

    From Stares to Support: Navigating Public Reactions and Guiding Loved Ones in Caring for Your Child

    Play Episode Listen Later Sep 11, 2024 11:56


    From Stares to Support: Navigating Public Reactions and Guiding Loved Ones in Caring for Your ChildWhat do you do when people stare at your child with a rare disease? How can you turn that awkward moment into an opportunity for connection?If you've ever felt uncomfortable or angry when strangers or even loved ones don't know how to interact with your child, this episode will help you shift your mindset. By assuming good intentions and leading with compassion, you can turn difficult moments into chances to educate and connect.1. Learn how to handle public interactions when people stare at your child.2. Discover ways to guide friends and family to better support your child's unique needs.3. Find out how taking the lead in these situations fosters deeper understanding and inclusion for your child.Hit play now and learn how to create meaningful connections with both strangers and loved ones when navigating life with a child who has a rare disease.

    Eight Tools to Get Organized and Run Your Household Better

    Play Episode Listen Later Sep 4, 2024 25:02


    Eight Tools to Get Organized and Run Your Household BetterAre you looking to get organized and level up your productivity?With the arrival of autumn, many of us feel the urge to hit the reset button and get our homes and lives back in order. But managing the influx of documents, communications, and daily tasks can be overwhelming, especially for parents balancing the unique challenges of caring for children with rare diseases.1. Discover powerful tools to tackle document clutter, so you can regain control over your household.2. Learn expert strategies to streamline your communications, making sure nothing slips through the cracks.3. Equip yourself with the ultimate organization techniques to stay prepared for whatever life throws your way.Tune in to this episode now to transform your chaotic fall into a season of calm and productivity!David Friedman's how-to guide for opting out of snail mail, from his newsletter Ironic Sans: https://ironicsans.substack.com/p/i-get-no-mail-and-its-glorious

    Empowering the Neurotypical Sibling

    Play Episode Listen Later Aug 28, 2024 14:05


    Are you struggling to balance the needs of your neurotypical child while raising a sibling with a rare disease?This episode dives into how you can shift your mindset to see the hidden benefits your neurotypical child gains from growing up alongside a sibling with a rare condition, helping you address the common concerns of feeling overwhelmed or guilty.1. Learn how to reframe challenges into growth opportunities for your neurotypical child.2. Be a sturdy parent, as Dr. Becky Kennedy describes in her excellent parenting book Good Inside. 3. Discover the "carve out" technique to ensure your neurotypical child receives the attention and experiences they need to thrive.4. Understand the long-term emotional intelligence and resilience your child develops in this unique family dynamic.Don't miss out—press play now and give your neurotypical child the gift of emotional growth and resilience today!

    Tess Goes to Camp

    Play Episode Listen Later Aug 21, 2024 6:29


    Quick update about Miss Tess and her adventures at summer camp.

    Medical Visits: Essential Moves for Rare-Disease Parents to Get Your Kid Feeling Better Without Depleting Yourself -- Part 2 of 2

    Play Episode Listen Later Aug 17, 2024 21:48


    How could you change your mindset about taking your child with a rare disease to the doctor?Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode is about your mindset--learning to trust yourself and others.1. Enlist two types of co-pilots for visits to make sure you don't miss anything.2. Trust yourself, since you know your child better than anyone.3. Hear from Harvard-educated pediatrician Dr. Bell about the best ways to help your doctor help you.Tune in now to gain these actionable tips to make the most of doctor visits!

    Medical Visits: Essential Moves for Rare-Disease Parents to Get Your Kid Feeling Better Without Depleting Yourself - Part 2 of 2

    Play Episode Listen Later Aug 14, 2024 21:48


    How could you change your mindset about taking your child with a rare disease to the doctor?Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode is about your mindset--learning to trust yourself and others.1. Enlist two types of co-pilots for visits to make sure you don't miss anything.2. Trust yourself, since you know your child better than anyone.3. Hear from Harvard-educated pediatrician Dr. Bell about the best ways to help your doctor help you.Tune in now to level up and make the most of doctor visits!

    Medical Visits: Essential Moves for Rare-Disease Parents to Get Your Kid Feeling Better Without Depleting Yourself

    Play Episode Listen Later Aug 7, 2024 12:08


    Do you dread the exhausting ordeal of taking your child with a rare disease to the doctor?Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode tackles practical strategies to streamline these visits, ensuring your child's needs are met without leaving you completely drained.1. Discover simple, time-saving tips you can implement from home to reduce stress and make doctor visits smoother.2, Learn about a vital tool that will keep everyone informed and aligned on your child's medical care, simplifying communication.3. Find out how to enlist a key partner who can help you navigate the complexities of medical care, ensuring no detail is overlooked.Listen now to gain these essential tips and partner insights, and make your next doctor visit less stressful and more efficient!

    How to Get an Autism Spectrum Diagnosis and Why It Matters More Than Ever

    Play Episode Listen Later Jul 31, 2024 15:41


    Are you worried your child might be struggling with social interactions or communication, and wondering if it could be autism?Navigating the challenges of parenting or caregiving can be overwhelming, especially when it comes to understanding and addressing potential developmental disorders like autism. This episode explores how to identify signs of autism, the steps to get a diagnosis, and why early intervention is crucial for setting your child up for success.By tuning in, you'll:- Gain a clear understanding of autism spectrum disorder, including key signs to watch for in social interaction, communication, and behavior.- Learn practical steps to obtain a diagnosis, including free resources and expert insights from a pediatrician.- Discover the importance of a diagnosis for accessing vital educational services and support that can significantly benefit your child's development.Listen to this episode now to equip yourself with the knowledge and tools needed to support your child's journey with autism!

    Health Insurance: 7 Tips to Beat the Insurance Company and Get Your Family's Bills Covered

    Play Episode Listen Later Jul 24, 2024


    Have you ever felt like navigating insurance claims for your child with disabilities is a full-time job?As a parent or caregiver of a child with disabilities, you're likely dealing with an overwhelming number of medical appointments and insurance claims. This episode addresses how you can simplify this process and ensure you get the coverage you deserve without the added stress.1. Learn about two smartphone apps that can save you hours and help you stay organized with your insurance documents.2. Discover the story of how shaming an insurance CEO led to top-level assistance and how you can leverage similar tactics.3. Find out who your most powerful allies are in navigating insurance claims and how to get their support.Hit play now to uncover these seven actionable tips and make your insurance company work for you!

    Special Education: 25 Power Moves to Make Your Child Seen and Known at School - Part 2 of 2

    Play Episode Listen Later Jul 17, 2024 20:31


    Are you ready to navigate the complex world of special education and become the best advocate for your child?This episode (part 2 of 2) dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you're seeking ways to better support your child's educational journey and ensure their rights are upheld, this is a must-listen.By tuning in, you will:- Gain 25 actionable tips to empower both you and your child in the special education system.- Learn the critical importance of record-keeping and effective communication with your school district.- Discover valuable free online resources and strategies for finding the right educational advocate or attorney.Empower yourself and your child today—hit play and start your journey towards becoming a stronger advocate!In this episode you'll discover: inclusion, how to measure it, and why it matterswhy "extra time as needed" on tests and quizzes is as useless as a rubber crutchhow to engage with your pediatrician and make them your strongest ally for your child's schooling

    Special Education: 25 Power Moves to Make Your Child Seen and Known at School - Part 1 of 2

    Play Episode Listen Later Jul 10, 2024 21:52


    Are you ready to navigate the complex world of special education and become the best advocate for your child?This episode dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you're seeking ways to better support your child's educational journey and ensure their rights are upheld, this is a must-listen.By tuning in, you will:- Gain 25 actionable tips to empower both you and your child in the special education system.- Learn the critical importance of record-keeping and effective communication with your school district.- Discover valuable free online resources and strategies for finding the right educational advocate or attorney.Empower yourself and your child today—hit play and start your journey towards becoming a stronger advocate!In this episode you'll discover: - why it's critical to keep records of your communication with your school district- my secret weapon for ALL my meetings (not just education ones)- online resources you can access for FREE about all aspects of education- how to find an education advocate/attorney in your area - the best language to use in your conversations with educators- why good grades in school aren't the only measure of successful education- why and how to talk to other parents in your school district- the weakest word and why you should never use it

    #494: Surfer Girl

    Play Episode Listen Later Jul 3, 2024 9:46


    I have watched you on the shore, standing by the ocean's roar. Do you love me? Do you, surfer girl?Shout-out to Special Surfers, a non-profit organization sharing the empowering experience of surfing with children and adults with special needs of all diagnoses. specialsurfer.org

    #493: The Eyes Have It

    Play Episode Listen Later Jun 26, 2024 7:39


    One day, in a nondescript office building in Portland, three adults give something to Tess. And she comes alive.

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