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

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.By Bo Bigelow

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

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

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

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 2 SED 508 - Traveling with Autism: 14 Essential Hacks f…

Today we're talking about Tess being sick recently.By Bo Bigelow

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.By Bo Bigelow

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

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

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.…

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

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.By Bo Bigelow

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

SED 527: Why I'm Changing the Show Back Last 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.By Bo Bigelow

Stronger Every Season: A Caregiver’s Mindset Shift What 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 mind…

Max Flex: The Rare-Disease Parent’s Superpower for Navigating Uncertainty How 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 ex…

Stepping Forward: How Shoes and Therapy Transformed Tess’s Confidence What 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 e…

Creative Workarounds for Extraordinary Challenges: Life with Tess Have 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 naviga…

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 professi…

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

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’…

Unlocked: Tess’s Midnight Adventure and the Lessons It Taught Us Have 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…

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

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

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

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

SED 514: Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting What 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—i…

Breaking Through Isolation: Finding Connection as a Rare Disease Parent Have 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 rais…

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

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

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 partn…

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 overlo…

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

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

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

Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2 Have 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 episo…

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

Eight Tools to Get Organized and Run Your Household Better Are 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 …

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 g…

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

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…

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 …

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 o…

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 d…

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…

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 th…

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.orgBy Bo Bigelow

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

Taking some time this week to reflect on community. The one we've built and continue to build, and what it means for Tess and our family.By Bo Bigelow