Stronger Every Day

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

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

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 for a Smoother Journey Part 2 of 2

Today we're talking about Tess being sick recently.

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.  

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

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

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.

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. 

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 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.

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 mindset shift that keeps you strong, capable, and even...

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 explore why these disruptions hit so hard and how a...

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 episode, you'll learn how small adjustments can lea...

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 navigate safety challenges for our 15-year-old daughter...

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. L...

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 others—especially from those you trusted to help. Thi...

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 p...

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-life story of Tess's nighttime escapade and explo...

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 it's for early intervention, an IEP, or critical...

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 with a rare disease, burnout might feel inevitable. B...

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 to help you turn the season into one that restore...

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 of balancing treatments and unknowns. Whether you’r...

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—issues that may resonate with many parents na...