Stronger Every Day
345 episodes - English - Latest episode: 4 days ago - ★★★★★ - 71 ratingsI quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called Hao-Fountain Syndrome, or USP7. She's different. And now, so is everything else. #USP7 #HaoFountainSyndrome #autism
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Episodes
#445: Traveling While Nonverbal Part 2
July 26, 2023 05:43 - 11 minutesOver the years, we've learned about what works when we travel with Tess. We're still learning. She shows us new ideas all the time. And this voyage is no exception. New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever. My blog about our life with Tess More information about Hao-Fountain Syndrome or USP7
#444: Traveling While Nonverbal Part 1
July 19, 2023 05:50 - 10 minutesAlong the highways and byways, there are quagmires wherever you look. The filthy bathroom in Hampton, New Hampshire. The police speed trap in Chicopee, Mass. And heck, there's an entire stretch of over 130 miles that couldn't be less friendly to our Tess. Our journey to upstate New York begins. Rest stops between Portland, ME and Skaneateles, NY On this road trip, I'll definitely be playing Eagle Eye in the car. It's a highway travel game I invented. The cost: $0.00. Put down your phone ...
#443: Hit It
July 12, 2023 05:53 - 7 minutesIt's 448 miles to Syracuse, we got a full tank of gas, half a pack of Larabars, it's dark...and we're wearing sunglasses. Hit it. What's the difference between a trip and a vacation? And which one will this voyage be? On this road trip, I'll definitely be playing Eagle Eye in the car. It's a highway travel game I invented. The cost: $0.00. Put down your phone and play too. https://www.portlandrootsmedia.com/eagleeye
#442: Decaffeinated
July 05, 2023 05:50 - 5 minutesThis episode is decaffeinated, much to our chagrin. And a small creature will make an appearance. ICYMI: last week's episode, SED 441, "Tess's Power Plant," is available here. New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever. My blog about our life with Tess More information about Hao-Fountain Syndrome or USP7
#441: Tess's Power Plant
June 28, 2023 05:02 - 8 minutesWith five minutes before go time, Tess makes a move. And all hell breaks loose.
#440: A Conversation with the Boy
June 21, 2023 05:19 - 18 minutesOn the road with the lad. A special trip that I took this week.
#439: What's For Dinner
June 14, 2023 05:26 - 9 minutesTess is ready to eat. I don't know what time it is, but that statement is true regardless of day or time. Check out my blog post about Tess's diet: "Here's what we feed Tess. Her diet seems to help with autism, intellectual disability, GI issues, and her speech disorder."
#438: Containing Hyperphagia
June 07, 2023 05:29 - 7 minutesTess's hyperphagia makes an appearance at a birthday party. No zone or man-to-man defense can stop her.
#437: Signposts
May 31, 2023 05:23 - 10 minutesCertain items have meaning for Tess. They are positively loaded with meaning, so much so that they're like full paragraphs for her. Checking in with Tess and communication.
#436: The Anti-Bullies
May 24, 2023 05:01 - 9 minutesYou unfortunately hear from time to time about bullying in schools. But one thing you don't hear enough about are the anti-bullies. The people working, day after day, to prevent bullying. The Cromwell Center of Maine is doing super important work. Check out episode 177, “MC,” all about Dana and his hosting of the Cromwell Center event back in 2018. Click here to listen. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilit...
#435: Only Three More
May 17, 2023 05:41 - 8 minutesI haven't done this in a while, but I am calling upon you, Tess Army. I need you to do something for me. Help us get more patients. You can do it. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollec...
#434: Malade
May 10, 2023 05:50 - 3 minutesTess isn't feeling well. This is highly unusual. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing w...
#433: Back Out There
May 03, 2023 05:44 - 8 minutesWhat happens if you go quiet for four years? Is speaking like riding a bike? I spend a day with the fine folks at Charles River Labs. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Ar...
#432: Her Bark Is Worse than Her Bite
April 26, 2023 05:08 - 7 minutesI take the two girls, Tess and Penny, to a dog park. It is one of Tess's least favorite locations in the greater Portland area. Ruff! Rough! Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.c...
#431: Diagnosis Day
April 19, 2023 05:42 - 7 minutesLet's talk about diagnosis day. Daniel made a new film about that day. It's a big day, really. It's a mix of joy and grief. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are you on ...
#430: Did You Miss Me
April 12, 2023 05:57 - 8 minutesSpring is in the air. I'm back from a trip, and I got some key USP7 updates for ya, including a check-in with Miss Tess. What does it mean to miss someone? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thediso...
#429: Piano
April 05, 2023 05:25 - 6 minutesIn our house is a very large and extremely heavy object. Tess has found it utterly fascinating for most of her life. Tickling the ol' ivories. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollectio...
#428: Eye Know
March 29, 2023 05:38 - 6 minutesTess heads to the eye doctor. For a lonnnnnng appointment. How's this gonna go? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are you on our Discord server RARE & RELATABLE? It's a 2...
#427: Shawdiya
March 22, 2023 05:35 - 8 minutesIt's the end of an era. The final shift of someone who knows Tess and has helped her immeasurably. Nothing lasts forever, right? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are yo...
#426: I Was Wrong
March 15, 2023 05:49 - 7 minutesCounting our chickens before they have hatched. Got an update for ya this week on how Tess fared with her recent bout with Covid. Sad Tess. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.c...
#425: Round 2
March 08, 2023 06:28 - 6 minutesA week has just been 86'd. A big, big change of plans in our house for Tess. We've been through this before. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are you on our Discord serve...
#424: B
March 01, 2023 06:56B. It's the first letter of my first and last name. It's the name we all give to the plan that we pursue when the original plan isn't working out. And B also marks a new status for my partner Daniel and me, starting now. Hooray! Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Dis...
#423: Remember Sports
February 22, 2023 06:20 - 7 minutesTwo fans and a laptop. Tess discovers a new musical genre. What's the verdict? We explore Philadelphia-based band Remember Sports, specifically the track "Otherwise," from their 2018 record Slow Buzz. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most r...
#422: A Million Times Better Than Stuff
February 15, 2023 06:48 - 7 minutesI'm a year older. Blowing out the candles on this year's cake, what's on my mind? Thanks to my wife, I was able to take some much needed time off. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollec...
#421: Oh Say Can You See
February 08, 2023 06:57 - 10 minutesCVI stands for Cortical Visual Impairment. Tess has it, as do many people with Hao-Fountain Syndrome. But did you know that there's something you can do about CVI? What can Tess see? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the w...
#420: Nu Shooz
February 01, 2023 06:19 - 7 minutesLet's hop into the car and head out, shall we? We're going on a shopping trip. Let's find Tess some new shoes. Picture Tess in the shoe store. There's a deep calm about her. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. ht...
#419: Tess Knows How to Deal
January 25, 2023 06:52 - 7 minutesLife with Tess can be pretty darn challenging sometimes. When things go south, there's one method we have that always makes everything better. It requires no equipment, it travels with us wherever we go, and it costs zero dollars. Hayden Faith is Tess's Schaaf-Yang Syndrome sister. They even share a birthday! Hayden's folks Matt and Courtney Blickley have started a nonprofit to fund SYS research. Check out Faith for Hayden here: https://faithforhayden.org/
#418: Start Here
January 18, 2023 06:24 - 10 minutesSo you or someone you love has been diagnosed with Hao-Fountain Syndrome. Now what? It can definitely be overwhelming. But here are some resources. And some ways to get involved. If you or someone in your family has just been diagnosed with Hao-Fountain Syndrome or USP7, please join our private Facebook or Discord groups. Click below and then request to join the private group. Facebook: https://www.facebook.com/groups/969399453182041/ Discord: discord.gg/7UFUPAFs8K To get connecte...
#417: The Box on Our Doorstep
January 11, 2023 06:30 - 9 minutesA return to skiing. We heard about something amazing from Tess a week ago, and we had to see it for ourselves. Do we send this thing back, or what? Click here to watch my Instagram reel of Tess: https://www.instagram.com/p/CnKzFnxhsjI/ Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV...
#416: Slide Slide Slippity Slide
January 04, 2023 06:38 - 10 minutesTess hits the slopes for another season with Maine Adaptive, her ninth year of skiing. Only this time she decides to make a massive change. When Tess lets you know what she wants, you'd better listen. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most ra...
#415: Have Sequins, Will Travel
December 28, 2022 06:37 - 4 minutesThe mud room. It's our point of departure when we leave our house. And in that room, post-Christmas, Tess unleashes a neat-o surprise. Tess knows. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollec...
#414: Fidget
December 21, 2022 06:03 - 6 minutesCertain handheld objects give Tess a sense of peace. They keep her from getting bored. The wonderful world of fidgets. Where can I get more of these? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercoll...
#413: Germany Part 3
December 14, 2022 06:22 - 13 minutesThe phenotyping study begins for our girl in Germany. How does Miss Tess do? Wrapping up a three-part series about our recent trip. I share tips and tricks! #TravelingWithAutism Special shout-out to Gretchen McCulloch and Lauren Gawne, hosts of the great linguistics podcast Lingthusiasm, which totally saved me while I was in the hospital with Tess. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and v...
#412: Germany Part 2
December 07, 2022 06:43 - 14 minutesWe explore Heidelberg, getting some z's but not a lot. And we finally meet up with the scientist who knows more about Hao-Fountain than anyone else. More about our recent trip to Germany for the USP7 phenotyping study. #TravelingWithAutism Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fir...
#411: Germany Part 1
November 30, 2022 06:55 - 15 minutesTess takes her first voyage across the Atlantic. At long last, we begin our trip to Germany for the phenotyping study. Two words: Jet. Lag. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection....
#410: A Crucial Waypoint
November 23, 2022 06:37 - 5 minutesGermany, take two. Let's go see Dr. Schaaf. Let's try this again. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom ...
#409: Evaluation Exasperation
November 16, 2022 06:04 - 8 minutesEvaluations. They're a huge part of our life with Tess. They aren't really fun. If you're doing a questionnaire about your kid--to get services, Medicaid, IEP stuff--I'm with you. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the wo...
#408: Thirteen
November 09, 2022 06:54 - 6 minutesWe have a birthday girl in the house. This week, Tess turns the big one-three. It's been quite a ride so far with this gal. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are you on o...
#407: Tess Clams Up
November 02, 2022 05:27 - 8 minutesTess is such a talker. Not with words exactly, but a complex system of sounds and gestures. And one thing that can sometimes cause us a bit of concern is this: when she clams up entirely. What does it mean when Tess is quiet? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Diso...
#406: Bat-Signal Answered
October 26, 2022 05:25A call for help. A bat-signal in the night sky of life with a rare disease. One man sees the signal. And he answers. Solving the toothbrush conundrum. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisorderc...
#405: Tess and a Friend Conspire
October 19, 2022 05:16 - 4 minutesWhat is Tess's favorite item from the lavatory? Raise your hand if you think you know the answer. An update on life with our new puppy Penny. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection....
#404: We Can Handle an IEP
October 12, 2022 05:19 - 7 minutesIt's time once again for the great powwow among experts to work on Tess's education. I'm talking, of course, about her IEP. We've been through this a few times now. It helps that we have a dream team. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most ra...
#403: Being Seen
October 05, 2022 05:53 - 5 minutesGather round. I want to tell you a story about someone who really sees Tess. Tess's cousin is deeply interested in helping her. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are you ...
#402: A Food Tess Won't Eat
September 28, 2022 05:03 - 6 minutesApple picking. It's not just for people who need to get out of the house with their toddlers. A fun surprise in the pumpkin patch. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are y...
#401: Calendar Invites
September 21, 2022 05:35 - 9 minutesCalendar invites. Rare parents get a lot of 'em. And we pretty much have to click yes every single time. Mindset is key. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are you on our ...
#400: Four Hundred
September 14, 2022 05:28 - 14 minutesWe've come a long way together, Tess Army. Stay tuned through the end of this ep for an incredible surprise from my main man Daniel DeFabio. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.c...
#399: Victory in Maine
September 07, 2022 05:43 - 7 minutesStronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/ Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities....
#398: Take the Red Pill and See How Deep the Rabbit Hole Goes
August 31, 2022 05:11Foundations often start small, with a few parents around a kitchen table. But they grow. And ours is growing now, thanks to a special tool. Do you want to know what the Matrix is?
#397: Camp Dad
August 24, 2022 05:28There are no camps. No activities. No more summer school. What can we do in the last weeks of August, before school starts? Tess is having herself a dynamite summer. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www...
#396: Traveling with Autism - Part 2
August 17, 2022 05:16 - 8 minutesOur family just took our first voyage in over three years, to Montreal and Quebec. We learned a ton. And I'm back this week with some more tips about traveling with autism, so you know what worked for us on the road with Tess. Part two of two, with tips about what's been helpful for us as we travel with our Tess. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video ver...