Bo Bigelow Podcasts

Think 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.By Bo Bigelow

If 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.By Bo Bigelow

People 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.By Bo Bigelow

The 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.By Bo Bigelow

Tess 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 a…

Tess 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 USP7By Bo Bigelow

It 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 …

We'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…

Over 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 o…

Along 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…

It'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…

This 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…

With five minutes before go time, Tess makes a move. And all hell breaks loose.By Bo Bigelow

On the road with the lad. A special trip that I took this week.By Bo Bigelow

Tess 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."By Bo Bigelow

Tess's hyperphagia makes an appearance at a birthday party. No zone or man-to-man defense can stop her.By Bo Bigelow

Certain 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.By Bo Bigelow

You 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.…

I 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. A…

Tess 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 storie…

What 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 …

I 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. Availab…

Let'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…

Spring 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 p…

In 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. Avail…

Tess 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 Disorde…

It'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 …

Counting 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. Availabl…

A 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 an…

B. 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.…

Two 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 tit…

I'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. A…

CVI 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 f…

Let'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 …

Life 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 Blickl…

So 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 reque…

A 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 disabi…

Tess 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 tit…

The 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. A…

Certain 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…

The 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.…

We 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 di…

Tess 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. Availabl…

Germany, 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…

Evaluations. 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 …

We 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…

Tess 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. Ov…

A 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 podcas…

What 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. Availa…

It'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 tit…