show episodes
Bringing Up Betty is a podcast about the unique experiences that come with raising special needs kids. The podcast is a collection of narrative interviews with parents who are raising children with disabilities, developmental delays, diseases and other challenges.
Sensory Nanny is now a part of The FlyLady Network. You can still download previous archived episodes here. For future shows please go to
I quit my law job to be a stay-at-home dad with my kids. Turns out my daughter Tess has special needs. She's different. And now, so is everything else.
Global perspective on early diagnosis and intervention for children with developmental delays and disabilities
The VB-MAPP App is the only iPAd app that facilitates conducting the VB-MAPP assessment, an industry standard for treatment of children as well as adults with developmental delays.
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show series
Something happened to Tess. Something that fills us with dread. A huge thank you to Falmouth Fire-EMS for the insanely prompt response time. I know you guys got here in an eyeblink.
Our family puts our heads together to solve a new problem for Tess. And we totally crush it. Sort of.
Three things we need when we take the kids to Bar Harbor. Not just beer. Want to play a fun travel game? Here's one that I invented called Eagle Eye. Download your free copy today: (I won't even ask for your email.)
I've been banging my head against a digital wall for six months. And this week I finally broke through. Great news: we just found patient #35! How can you help us find more? By sharing this episode, especially with someone who's undiagnosed.
A girl. A prediction. A wrong prediction. And a really, really weird result after the one-year mark. CALLING ALL RUNNERS: If you're planning to run a race--anywhere--in the weeks and months to come, please consider running it virtually for USP7! Details are here:…
Four incredible boys unite to start up a lemonade stand, a special one. Not to get candy money, but to help our Tess. Hey! Watch some local news features about the lemonade stand: | "Local Lemonade Stand Makes National Difference" / News Center Maine - WCSH & WLBZ | "Local Kids Raise Money For Rare Genetic Mutation Research" / WGME…
This DJ, literally those are his initials, is my favorite MC.
What does prog-rock have to do with Tess? And what did she do this week to scare the bejesus out of us?
Some of the greatest minds in social media turn their attention to Tess and our foundation.
25 hours of running, accompanied by some of our dearest friends and Tess's greatest supporters. #Ragnar #RagnarCapeCod
Part 2 about our recent trip to Atlanta. Brunch treats, cousins, and walking. Walking the heck out of the place.
The first in a 2-part series about our trip to Atlanta. Will Tess give us a hard time, or turn out to be a real peach?
April 7th. The birthdays of Billie Holiday, Jackie Chan, and Russell Crowe. Also the day that prohibition ended in the US. And now a red-letter day in our house as well. Check out our latest video, "Phone Calls and Canadians," over on YouTube - click here. To read my blog post "Ribbons," from four years ago, about wishing we could have a sticke ...…
A snapshot of Tess, April 2018. What she's into, and what she's not into. Plus BONUS CONTENT - a full episode of Eurekatown from a few years ago, all about Bryan Leach of Ibotta.
A former foe returns. And like in cartoons, we forget past wrongs and he teams up with us for an episode.
The Easter Bunny pays a visit. Tess is unexpectedly thrilled. This is a new development. Be part of the very first USP7 Awareness Day on April 7th! Head to to learn how you can help.
Tess has been in school for a long time now. Since she was two. At this point, does she have a best friend? If so, who? Less than two weeks until April 7th, our first USP7 Day of Awareness. We've waited years for this. I want you to be part of our first awareness day, if you're willing. Tons of ways to get involved, whether it's letting others ...…
An activity that's been hit or miss for our girl. But this time Tess is a complete rockstar, in every sense of the word. Maybe it's because of what she did to start her day. April 7th is USP7 Awareness Day. Great day to wear your USP7 t-shirt, if you've got one. Want to be a USP7 Ambassador, and help us spread our mission and vision? Just head ...…
When it comes to Tess I don't have it all figured out, but I know one thing. There's a way to make things better. Looking for more ways to help? Join the USP7 Ambassador Program today. Click here for details. If you're not reading Melissa Hagar's blog IWill4Will, you should be. Click here to check it out. It's not just you. If you've got no one ...…
What I tell you about Tess depends on several factors. Want the real, authentic truth? Well, how much time do you have? Shout-out to Jennifer Siedman and Blyth Lord of Courageous Parents Network:
Tess is feeling under the weather, and we know it right away. We're up to 32 USP7 patients worldwide! We got there mostly because you share stuff. Keep it going by sharing our award-winning film. Click here to view it on YouTube, or just go ahead and share this link: More info about our film, including awards, press ...…
It's the day we express our feelings to the people we love. And there are people that Tess loves. So what does she do on Valentine's Day? Best way to show you're in the Tess Army? Get yourself a TEAM TESS t-shirt. Click here to order yours today!
The T-Bird's bedtime ritual is a long and complicated affair. It feels like an hours-long magic spell, complete with eye of newt, to get her down. Here's what happened when her brother jumped in. Get your limited edition TEAM TESS t-shirt today! Order now before it's too late. Click here to order:…
A friend shares a eye-opening article about people with intellectual disabilities. People like Tess. Who can't defend themselves. Here's Joseph Shapiro's NPR article I refer to in this episode: | It's part of NPR's special series called Abused and Betrayed. ...…
Tess hits the pool. And there in the water, she pushes hard to break away from me. To be on her own.
An injury to Tess makes us stop and think. About her. And about ourselves. Hey! Our foundation just got 501(c)(3) status! We're lining up ways to partner with companies and collect donations. Want to help? Give me a shout on Facebook or send me an email:
Tess makes a move. Afterwards, is she proud of herself? You could say that. Thanks to all of you listeners for being so excellent over the past THREE YEARS of shows. Have you heard every single episode? If so, give me a shout on Facebook or Twitter. || Tess is a video star. Check her out on YouTube:…
Triumphs with Tess. Some of the highest high points of the past few years. Have you seen the Tess videos yet? There are two already available, over on YouTube. Head to to check them out.
Taking you back, to the best stories of my epic fails with Tess. The first Tess videos are already up, over on my YouTube channel. Click here to watch them now. The channel's link (in case you'd like to share with others) is
After many years, Tess left the world of Apple behind. And we embarked on a new chapter. With an opening that was nothing short of mind-blowing. YOU are a podcast person. I know this because you're listening to this one. But in case you're ALSO a YouTube person, check out my channel and subscribe today. You want to do this. That's because very ...…
Photography by Patience Cleveland || Going back to a place that’s endangered our girl before. How can we keep her safe?
Trying to solve two problems. Both about hunger. Hunger that doesn't make any sense. And has no end. I have a YouTube channel. It's easy to find--just go to and you'll be able to see all kinds of nifty clips. Have you seen Tess's short film? Oh yeah, it's on there.
We carried Tess for the first 5 years of her life. Because her hip issues prevented walking. It was a dark time for our heroes. Are we about to return to those days?
I’ve said before how I hate evaluations of Tess. How they make me feel, how they downplay her abilities. But recently I turned the tables on an evaluator. Mwah-hah-hah!
We switch up Halloween in an effort to honor Tess’s wishes. Of the four people in our household, how many end up happy on Halloween night? Help us raise money for research into Tess's disease. Click here to help out.
To keep Tess happy, we’re pretty dependent on routine. Showing her that this thing happens, then this, then this. Always always always. Until it doesn’t. Have you left me a nice review on iTunes yet? Take a sec and write one up. It'd really help. Thanks. Click here.
Some relentless questioning, by an eight-year-old in Tess's class. He wants the truth. But can he handle the truth? Can we?
Showing our film about Tess at the rare disease film festival. What if you were in a room, an audience, full of people who get it? Then what? Your birthday can help us. Whaaa? Here's a video to explain: click here || Keep tabs on the film fest. Lots happening in the next couple weeks. Facebook: click here Twitter: click here Website: click here ...…
Part 2 of our story about the gala. They came, they laughed, they bid on stuff, they ate, they drank, and above all, they showed the love. Big time. Donate to our foundation: click here || Watch our short film and share the heck out of it: click here
We launch our foundation with a huge blowout—a gala at our house for our gal Tess. What does it mean, and how do people respond? DONATE TODAY to our foundation: click here to make your donation online at, or you can mail a check made out to "Foundation for USP7-Related Diseases" -- just send it to: Foundation for USP7-Related Diseases, ...…
To help our girl, last May we started a foundation. We boldly promised to cure this disease that Tess has. So where are we at on that? Want to donate to our foundation and help Tess? You can do it online here, or mail a check made out to "Foundation for USP7-Related Diseases" to: Foundation for USP7-Related Diseases, 11 Innkeepers Ln, Falmouth, ...…
Tess is messing with us. For real. Do we give her a time out? Or do we just laugh?
For episode 140, I'm doing something a little different this week. I'm sharing a talk I gave last week about our rare disease film festival. If we make a film about Tess, what will happen? Watch the video of my speech at Shire last week (skip to 5:30 mark) || Here's an interview by Rare Disease Report with me and my co-founder, Daniel DeFabio. ...…
The roller rink. Perhaps Tess’s favorite place from this past summer. What happens when I bring her there?
Every night since the end of May, Tess has gotten an injection, just before bed. What’s it doing to her—good things?
A full summer of work for our foundation is punctuated by a bizarre encounter over lunch. Your goals are supposed to scare you, right? Well--gulp--we're gonna find us 100 patients. Yep. And you're gonna help us. To find out how you can help, head to my Facebook author page (click here) or Twitter (click here)…
A lucky pattern, one that lasts only a few minutes. But it has a profound effect on Tess for the rest of the day.
A long ride with Tess. It’s a mystery why she’s cranky. But we manage to solve it. Twice. Sort of. Last chance to get your USP7 t-shirts! Click here to order yours before the closing date of August 10th!
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