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
Special Education: 25 Power Moves to Make Your Child Seen and Known at School - Part 1 of 2
July 10, 2024 05:09 - 21 minutesAre 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 speci...
#494: Surfer Girl
July 03, 2024 05:07 - 9 minutesI 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
June 26, 2024 05:19 - 7 minutesOne day, in a nondescript office building in Portland, three adults give something to Tess. And she comes alive.
#492: Community
June 19, 2024 05:01 - 7 minutesTaking 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.
#491: Three Little Letters
June 12, 2024 05:40 - 10 minutesIf you have a kid with disabilities, your life is full of stuff you'd perhaps rather not do. Go to a million appointments, wind up in hospitals, deal with paperwork. But there are three letters that create more dread than nearly everything else.
#490: Crunch
June 05, 2024 05:28 - 2 minutesI'm in the bleachers at a field. I watch two opposing lacrosse players collide with a massive crunch that's audible from the stands. Many parents gasp. I don't. I just watch in dismay and disbelief.
#489: Becoming an APS - Two Rare-Disease Tools I Can't Live Without
May 29, 2024 05:44 - 11 minutesIf you're trying to cure a rare disease, there are two tools that you can't live without.
#488: The Cloak of Ban D'aid
May 22, 2024 05:10It's a common problem in our house. A certain young lady who gets cuts from time to time. And who hates Band-Aids more than anything.
#487: Nate the Ultra-Fantastic
May 15, 2024 05:17 - 6 minutesI want to tell you a story this week of someone who grew up here in Maine. I've gotten to know him over the past few months, and he recently raised his hand, boldly stepped forward, and made a massive difference for Tess and our foundation.
#486: Trampopoline
May 08, 2024 05:40 - 7 minutesTo quote Princess Leia, the more you tighten your grip, the more star systems will slip through your fingers.
#485: Costa Rica - Part 2
May 01, 2024 05:42 - 7 minutesMore stories from near the equator. Part 2 of 2 about our recent trip with Tess to Costa Rica.
#484: Costa Rica - Part 1
April 24, 2024 05:35 - 14 minutesIt's time. It's time to take Tess out of the United States and into another country. A huge thank you to Luis and Robert from The Springs Resort in Arenal.
#483: I Can Do It, I Know How
April 17, 2024 05:46 - 4 minutesWe have a saying in our house. We talk about "the age of independence". And yes, there are some eyerolls from our kids, but we push them to do stuff for themselves.
#482: Eclipse
April 10, 2024 05:42 - 8 minutesA rare event. A solar eclipse in the United States. Where was Tess on that day, and what was she doing?
#481: A Massive Piece of the Quest for a Cure
April 03, 2024 05:52 - 9 minutesYou're busy. Sometimes you think about how busy you were a year ago and think wistfully--man, that wasn't busy at all compared to now! But in spite of this busyness, there's something that's required from all Hao-Fountain patients. If you need to donate to our biorepository because you haven't yet, email me here: bo [dot] bigelow [at] gmail.com. Buzzy - personal vibrating ice pack for easier shots for kids. Order on Amazon here.
#480: Thirteen Gallons of Milk
March 27, 2024 05:48 - 6 minutesI always tell you I got more questions than answers. But this week, I've come up with an answer. And it's helping me every single day.
#479: Banquet
March 20, 2024 05:06 - 7 minutesStudent-athlete Tess. She's been on a team this winter through her school, and we've just come off a massive, colossal celebration of the whole shebang.
#478: Sunday Bloody Sunday
March 13, 2024 05:12 - 6 minutesSometimes when you're on the road, your plans go out the window. You have only a fraction of the stuff you need. But something unexpected comes up. And you have to MacGyver a solution.
#477: ET and Elliott
March 06, 2024 06:37 - 4 minutesTess has this thing. It's not a superpower, but a way of seeing the world. The best way to describe it comes from a movie from 1982.
#476: Breathe
February 28, 2024 06:40 - 8 minutesTess has developed a new habit. It's about her breathing. And it seems like she may be trying to tell us something. If you're from the Hao-Fountain community and you see behaviors that you're working to address, give me a shout: [email protected]
#475: Awaken
February 21, 2024 06:18 - 9 minutesIf you're like me, you're bombarded these days with articles all about the importance of regularly getting good sleep. My wife and I would do this if we could. But instead, we have children.
#474: Fifty
February 14, 2024 06:24 - 7 minutesI have aged. Since the last time we were together, I've passed the half-century mark. And I have a few thoughts for ya.
#473: The Trails Are Yours
February 07, 2024 06:28 - 6 minutesCome spend a day on a snowy peak here in Maine. Come watch our Tess as she puts on her ski coat and hits the slopes once again.
#472: HOOPS
January 31, 2024 06:13We're basketball fanatics in our house. And when I say we, I'm including Tess.
#471: This Won't Happen Without You
January 24, 2024 06:36 - 10 minutesPsst! Hey. You. Yeah. I'm talking to you. Can you help me? Why, and how, we need your help to keep the foundation and our mission afloat. Where to send people to donate: usp7.org/donate
#470: H-Town
January 17, 2024 06:40 - 21 minutesSeven men. On foot over 183 miles total. Nearly 300 kilometers. Deep in the heart of Texas. This marathon was to raise money for Hao-Fountain research. Thanks to all of you who've generously supported us so far. In case you haven't had a chance to donate yet, here's where you can do that: https://bit.ly/3vGHHIy
#469: Texas or Bust
January 10, 2024 06:54 - 9 minutesAn invitation from across the Atlantic. And a return after many years to a city west of here. The city where it all began.
#468: Get Outta My Room
January 03, 2024 06:22 - 5 minutesThe bedroom of your teenage child. It's a refuge. Sacred territory. Never to be breached, unless specifically invited inside.
#467: We Gotta Stop Meeting Like This - Part 2
December 27, 2023 06:00 - 13 minutesOur sweet Tess returns to the emergency room, for the THIRD time in a month.
#466: We Gotta Stop Meeting Like This - Part 1
December 20, 2023 12:18 - 9 minutesOur sweet Tess returns to the emergency room, for the second time in a month. The latest in a long line of medical mysteries involving our girl.
#465: Despondent
December 13, 2023 06:12 - 3 minutesWhat's a word you'd pretty much never use to describe Tess?
#464: Let's Do Everything and Nothing
December 06, 2023 06:19 - 5 minutesYou're familiar with Sam-I-Am, probably. Tess definitely is. But there's a new book on our shelf that has become her favorite.
#463: Real Genius Meets Midnight Madness
November 29, 2023 06:41 - 10 minutesWe're holding an event next year and we're inviting some of the greatest minds in science. Think Real Genius meets Midnight Madness.
#462: Tess in the ER Once Again
November 22, 2023 06:36 - 16 minutesAn early morning scare with Tess.
#461: Soothe Yourself
November 15, 2023 06:12 - 9 minutesHow do people with autism see the world? And what can we do to help them soothe themselves when they're in distress or discomfort?
#460: Fourteen
November 08, 2023 06:01 - 5 minutesThere's another candle on the cake. Let's celebrate with our T-Bird, as we do each November.
#459: Lewiston
November 01, 2023 05:20 - 6 minutesIt's been a difficult week here in Maine. Tess may not grasp what's happened, but she knows something's different.
#458: Conference in Denver Pt 3
October 25, 2023 05:45 - 8 minutesHitting you with episode three about the meetup in the mountains. My wife and I are in Denver, Colorado for a USP7 conference and it's our mission to get scientists wound up about helping us cure this thing.
#457: Conference in Denver Pt 2
October 18, 2023 05:41 - 9 minutesMore about the roundtable in the Rockies. My wife and I are in Denver for a USP7 conference and we're having a sitdown with a bunch of brilliant scientists.
#456: Conference in Denver
October 11, 2023 05:45 - 12 minutesRestarting. Resetting. Getting things back on track with our first usp7 conference since 2019. This one had some developments that can only be described as seismic.
#455: Bound for Denver
October 04, 2023 05:07 - 4 minutesHeading to Denver this week for the first USP7 conference we've attended in four years. I'll give you a little preview of what we're going to be talking about.
#454: Bubbly
September 27, 2023 05:06 - 7 minutesWhat if you only had about five words you could use? And you had almost no choice but to use only those five words to get what you wanted?
#453: Amber Turbo
September 20, 2023 05:44 - 9 minutesThink of our foundation as a car. The car is six years old. It has traveled many many miles and been all over the place. And we have just installed a turbo. Amber Freed is our foundation's new executive director. You can read her story here.
#452: Anti-Anti-Doping
September 13, 2023 10:15 - 5 minutesIf you're a pro athlete in any sport and you take growth hormone in any form, you're gonna get busted. It's considered doping. But here in our house, we give it to Tess every day.
#451: Ritualize Chronic Compassion
September 06, 2023 05:17 - 12 minutesPeople are always asking me, how can I help you guys in your life with Tess? And honestly, the answer is sorta difficult to formulate. Today I'll explain. We need to ritualize chronic compassion. Click here to read Daniel's blog post.
#450: New Beginnings
August 30, 2023 05:42 - 7 minutesThe fall semester of school is kicking off for Miss Tess today. She's excited, and so am I. It's a new day. My new band is called UNLESS PROVOKED. We like you. Unless Provoked website Unless Provoked Instagram Unless Provoked Facebook Unless Provoked YouTube Get your t-shirt here.
#449: I Might As Well
August 23, 2023 05:04 - 6 minutesTess has come a long way through physical therapy. Learning to walk. Loosening her upper body and reaching upwards over time. Going up and down stairs. But there's one thing she just won't do. 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
#448: Floating
August 16, 2023 05:51 - 4 minutesTess is out of school for the summer. Let's go do something fun with our girl. 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
#447: Island Blues
August 09, 2023 05:31 - 7 minutesIt is our long-awaited week off in the summer. It's our turn at the island house we share with my wife's siblings. And just about every moment Tess is trying to tell us something very specific. 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
#446: Traveling While Nonverbal Part 3
August 02, 2023 05:32 - 9 minutesWe're concluding our series about travel with our girl. She attends a party, tries to sleep, and at the end of it all gets back in the car. 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