Portland Roots Media

**#325: Shot** Apr 07, 2021

Orange Julius, Chess King, and KB Toys. Today I'm thinking of all these mainstays of shopping malls from my childhood. Because my travels today are taking me to a totally 80s mall.

Tess+at+school+Mar+2021.jpg — **#324: It's Go Time** Mar 31, 2021

I have a thrilling announcement that I've been waiting for months and years to share with you. At long last, after many false starts, it's go time.

**#323: Tess Gives Us a Scare** Mar 24, 2021

For Tess, you gotta have a safety system. Plus a backup. But what do we do if both fail--the system and the backup?

**#322: Nacho Nacho Man** Mar 17, 2021

She's been a paragon of patience. A real gem. But it's safe to say that Tess has had enough.

#321: The Endocrine System Mar 10, 2021

The fine folks at Feedspot have featured this podcast among the Top 15 Stay at Home Dad Podcasts You Must Follow in 2021. Not sure if they're in any order, but I'm coming in at 2 on the list of 15.

https://blog.feedspot.com/stay_at_home_dad_podcasts/

**#320: RDD in the 207** Mar 03, 2021

Once a year as a planet, we take a day to honor all rare diseases. It's traditionally been a time for us to climb up to the highest tower we can find and shout USP7 for the entire day. Until we lose our voices, basically. But in 2021 we did something different.

**#319: The T-Bird Learns from Marvel Villains** Feb 24, 2021

Tess's disease makes a bunch of her systems go a bit haywire. But there's one system that we're doing okay with managing. And it all comes down to getting a certain test for our girl. A test that hasn't always been easy.

IMG_9492 2.jpg — **#318: Level Up** Feb 17, 2021

We've often said that vacations are the times when Tess takes steps forward. When she unleashes a new skill or ability. When she levels up. And this week was no exception.

**#317: Tess Makes Two Sounds** Feb 10, 2021

Part of Tess's disease is challenges with language. But our girl made two sounds this week that made it very clear what she was trying to say.

**#316: Being There** Feb 03, 2021

Have you, Tess Army, ever thought about the title of this show? Let's do that together today, shall we?

**#315: The First Words of the Morning** Jan 27, 2021

Tess has some favorite places in the world. And this week she returned to one of them after a long absence.

**#314: Sriracha** Jan 20, 2021

I like food. I like spicy food. And this week I whipped up a bowl, brought the heat, and watched a certain someone steal my eats.

**#313: It's a Mistake** Jan 13, 2021

As a result of all this, all this that's happening, well, we're all kinda sloppy. Yes, even you. But it's okay.

**#312: B and P** Jan 06, 2021

Two special people. They live not too far away but also not close. They thought about our Tess this week and it meant a lot to us.

**#311: See Ya, 2020** Dec 30, 2020

People have some choice words for this year of 2020 as it ends. Most of which I shouldn't repeat on this here podcast, in case your kids are listening. But despite this year's challenges, we're choosing to look at a different side of it all.

**#310: Better Than a Walkman** Dec 23, 2020

Sometimes you're tired. And sometimes, when you're tired you just try something because you don't know what else to do. And once in a while, that thing you try turns out to be just right.

**#309: Olfactory Adventures** Dec 16, 2020

Very few things are as precious in our household as our morning cup of coffee. And very few things are as sad as when it gets spilled. Nevertheless, these days we're bringing our cups as close to Tess as we can.

**#308: Tested** Dec 09, 2020

Since March 13, Tess has gone almost nowhere. She's been on total pandemic lockdown. Except there's one place she's been going, in person, fairly regularly.

To see the **eight-second epic fail** of my recent **homeschooling** day with Tess, click here: http://www.portlandrootsmedia.com/homeschooling

Tess+rainy+window.jpg — **#307: The Place to Be** Dec 02, 2020

Tess seems to have figured out one of the secrets of getting through this pandemic. Let's check in with her.

**#306: The Reservoir** Nov 25, 2020

At Thanksgiving time, I feel like the world's divided into two--you either watch football or you don't. And in case you're looking for something to watch other than the big game, I got something for ya.

**#305: Choppin Broccolay** Nov 18, 2020

Our kitchen's where we spend about 90 percent of our waking hours. It's Tess's fave place for sure. What exactly is our girl doing there, when she's not eating?

**#304: Oddly Satisfying** Nov 11, 2020

Another week and Tess has just celebrated another birthday. She parties in style.

**#303: Sorry, I Have to Ask** Nov 04, 2020

A fire with some friends warms our bones. And our hearts. And then we have a rather complicated phone call.

Screen+Shot+2020-10-27+at+4.42.39+PM.jpg — **#302: Halloween Is Cancelled** Oct 28, 2020

We've finally figured out an annual Halloween activity that works great for Tess. When it's cancelled this year, what can we do instead?

For my **earlier episode** Ron Burgundy or Han Solo Tess on Halloween, check out episode 148, “**Ron Burgundy or Han Solo**.”

**#301: The Questions Never End** Oct 20, 2020

If you don't have answers for a really long time, you come with questions. And those questions multiply as the years go by.

Screen+Shot+2020-10-12+at+8.12.35+PM.jpg — **#300: Chicago, in Your Living Room** Oct 14, 2020

We shoulda been in the Windy City this week. And we weren't. But we did go to a place that made a difference and moved the needle.

**#299: The Square Package** Oct 07, 2020

One thing happened this week that boosted my mood and helped me immensely. And it began with a square package.

Screen+Shot+2020-09-29+at+6.18.01+PM.jpg — **#298: Old Man Sounds** Sep 30, 2020

This week we're walking up steps, counting days, giving ourselves a break. And I'm making old man sounds.

Screen%2BShot%2B2020-09-22%2Bat%2B6.25.06%2BPM.jpg — **#297: Baba Ganoush** Sep 23, 2020

Let's get real. Let's talk eggplant. And also about ways that I can feel better in my head.

Screen+Shot+2020-09-15+at+6.42.19+PM.jpg — **#296: All the Cool Kids Are Doing It** Sep 16, 2020

Tess succumbs to peer pressure. In the best possible way.

**#295: The Return** Sep 09, 2020

Travel. It's on hold, pretty much. But today Tess took one of her longest rides in months.

**#294: The Circle of Awesomeness** Sep 02, 2020

Less than a week to go, folks. School opens soon. But first I’ve got something to say.

**#293: Almost Back to School** Aug 26, 2020

Summer ends, eventually. Right?

**#292: It's On** Aug 19, 2020

A brief getaway. A seaside watering hole. And a text message that totally rocks.

**#291: Named** Aug 12, 2020

If you're a stranger, say in a grocery store, and you meet Tess and me, I can already tell you how it's probably gonna go.

**#290: Shield** Aug 05, 2020

Tess has autism. Which means she's highly sensitive to sensory stuff. She doesn't like things touching her face. Things like, oh I don't know--masks.

**#289: Play Ball** Jul 29, 2020

Taking a giant step forward. In Tess telling us stuff.

**Are you an SLP? Got any tips for me?** If so, drop me a line. My email address is info at portlandrootsmedia.com.

**#288: No Comment** Jul 22, 2020

Tess has been consistently saying: no comment. Until pretty recently.

**#287: July 13** Jul 15, 2020

An anniversary that we don't exactly celebrate. And a weird night with the T-Bird.

I want you to know that I’m doing **video versions of these podcasts**. Not all of them. But some. You can find this show, Stronger Every Day, on The Disorder Channel. I started the channel with my film-fest Daniel, and it's free right now. Yes right now. On Roku and Amazon Fire TV. **Just search for The Disorder Channel**.

**#286: A Forest** Jul 08, 2020

Come closer and see. See into the trees. Find the girl while you can.

My film fest partner Daniel and I have been hard at work for weeks on **something new for rare disease**, and it launches today, July 8th. It's a streaming channel called **The Disorder Channel**, and you can find it now for free on Roku and Amazon Fire TV. It's got **hours of content**. Tess's USP7 film is on there, as well as some video versions of this here podcast. Just fire up your **Roku or Amazon Fire TV**, and search for The Disorder Channel. **Add it today for free.** https://www.thedisordercollection.com/
Check out the channel

**#285: Extended** Jul 01, 2020

How's Tess's summer shaping up? Welp, she's got work to do.

**#284: Walking the Path** Jun 24, 2020

Come with me. On a short boat ride. And I'll show you Tess's happy place these days.

**#283: Skin Deep** Jun 17, 2020

What is the largest organ in the human body? Anyone? Anyone? It's the skin.

**#282: Lucas** Jun 10, 2020

I want to tell you about a boy that I knew. A boy and his dad.

Click here to check out (nearly) all of **Daniel’s material about his life with Lucas**, including the **hilarious story of their trip to Disney**, and the video spoof of the hit show The Office that his family made this past spring.

**#281: Up All Nite** Jun 03, 2020

Up late thinking? Yeah, me too.

**#280: Let's Play** May 27, 2020

Often you give Tess a toy, and she's far more enamored of the box it came in. But she just got a toy in the mail that's a huge hit.

**#279: OT Goes into OT** May 20, 2020

I know time is behaving strangely for all of us these days, but let me tell you about a half hour with Tess that lasted several weeks.

**#278: A Circle of Friends** May 13, 2020

Like most of us, Tess has a lot of video calls these days. They haven't gone so well. Until now.

**#277: I Gotcha Now** May 06, 2020

No doubt about it—Tess is bored. And what does she do when she's bored?

**To hear more about Tess's current babysitter** **Daisy**, check out episode 197, entitled What Daisy Knows. It's about **Tess and her brand of autism** and ways to get through to her. Definitely worth a listen if you're having any doubts about the future of America and **who will be our greatest leaders**, the ones worth following, and **what they are made of**. Click to listen: http://www.portlandrootsmedia.com/strongerpodcast/2018/10/24/197-what-daisy-knows

**#276: Edge of the World** Apr 29, 2020

It's been an interesting few weeks here. Just when I start to think I've got this, Tess throws us a curveball.

**#275: My Mistake** Apr 22, 2020

It's tempting to focus on what makes Tess different. But sometimes it's good to think about the ways she acts like a typical fourth-grader.

**#274: How Not to Go Stir Crazy** Apr 15, 2020

Entering week five of COVID-19 lockdown here in Maine. If you're going a bit stir crazy, with the walls closing in, this one's for you.

**#273: Bad at Homeschooling** Apr 08, 2020

Entering week four at home here. Raise your hand if you're bad at homeschooling.

**#272: Vertigo** Apr 01, 2020

Here at the house, we're doing our best. And to quote Rob Base, it takes two to make a thing go right.

This week I quote from “Special Needs Parenting in the Age of Pandemic,” by **Sean Patrick Hughes**. Definitely worth a read. Click here to read the article.

**#271: Some Good News about Tess** Mar 25, 2020

We're in week 2 of lockdown here at home for the coronavirus. It's a good time to notice things.

**#270: Coronavirus Lockdown** Mar 18, 2020

Checking in from our house. Where we could be for quite some time.

During the lockdown, I’m posting some **1-minute videos** from time to time. **Come hang out with us** on my YouTube channel here.
If you want to help Tess, please get fully on board with social distancing and **stay home**. Thank you!!

**#269: Included Pt 4** Mar 11, 2020

Friends. Where would we be without them? And where would Tess be?

**#268: Included Pt 3** Mar 04, 2020

Tess couldn't be more different from her classmates in her learning style and what she's working on. But socially, she's a lot like them.

#267: Included Pt 2 Feb 26, 2020

Tess with her classmates, as much as possible. That's what we want to see.

**#266: Included** Feb 19, 2020

Tess's education has been super solid for a long time. But this week we realized something that made us want to look a bit deeper into what she does all day at school.

#265: Absolute Zero Feb 12, 2020

Quick quiz for ya. What's two minus two?

#264: Hip Check Feb 05, 2020

This week, we finally find out what's going on with Tess's hips.

#263: Singer, Unsteady Jan 29, 2020

Tess has had multiple surgeries over the years. And we, much to our chagrin, are not outta the woods yet on the T-Bird's hips.

#262: The One-Day Exhibit Jan 22, 2020

You can touch it, knock on it, do whatever you want. An art exhibit that was practically made for Tess.

#261: The Lockup Jan 15, 2020

Hot pizza. A rockin’ band. And a mysterious trigger for a very autism weekend.

#260: Her Aim Is True Jan 08, 2020

Sometimes a situation is going well. And we don't want to say a word, lest we jinx it. Because maybe we'll be unlucky enough to lose a special person in Tess's life.

#259: My Music Buddy (rerun) Jan 01, 2020

Happy New Year! Bringing back episode 210 for ya, all about Tess and her love affair with music.

#258: Happy and Merry Dec 25, 2019

Not sure what it is, but I seem to keep having these moments in elevators.

#257: Begrudgingly Dec 18, 2019

Tess's long-term memory is improving. Sometimes now she even holds a grudge after a certain person has gotten on her nerves. And sometimes that person is me.

#256: White Discourtesy Telephone Dec 11, 2019

It's a tale as old as time. A car, hurtling down the highway. A family riding therein. And the youngest child, becoming bored, decides to mess with the people around her.

#255: Tess Does a Can Opener Dec 04, 2019

Our girl is, to say the least, incredibly busy.

#254: Festival Pt 2 Nov 27, 2019

I'm a crier. I admit it. My wife busts my chops about it. I've been known to weep at cereal commercials. And in San Francisco this year, there was no shortage of tears.

#253: Festival Nov 20, 2019

I just wrapped up year two of a massive project. About Tess. And USP7. And some of the other 6999 other rare diseases.

#252: I Really Can't Talk Right Now Nov 13, 2019

Due to circumstances, Imma keep it short this week. Really short.

#251: Back on Track Nov 06, 2019

If they gave out punch cards for medical appointments, with frequent flyer miles for our Tess, she'd have enough points for a trip around the world at this point.

#250: Special 250th Episode Oct 30, 2019

My wife and I are good at some things. But we are terrible at sitting still, for even a short while. We are bad at the pastime of doing nothing.

#249: Getting on the Map Pt 2 Oct 23, 2019

The map turns out to be the key to everything we're doing right now. I'm talking about the rare-disease map. We want to get on it. And it is slowly beginning to happen.

#248: Getting on the Map Oct 16, 2019

New Orleans. Known for beignets, Mardi Gras, and conferences about rare neurodevelopmental disorders.

#247: For Tess, Seeing Is Believing Oct 09, 2019

TBE. Maybe you know what this stands for.

#246: Back to Global Genes Pt 2 Oct 02, 2019

Copying homework is exactly what you should do.

#245: Back to Global Genes Sep 25, 2019

In 2015, I was just starting out. Fresh out of the long winding painful chute of diagnosis with our T-Bird. What a difference 1460 days make.

#244: The Light Fantastic Sep 18, 2019

Austria. The land of the Von Trapps. The composers Schubert and Liszt. And the chef Wolfgang Puck. And also a guy whose work you might have seen, if you've ever gone to a rave in Vienna.

#243: Hiring Bruce Banner Sep 11, 2019

The future is now. We are about to hire Bruce Banner.

#242: Live and Die by the Tides Sep 04, 2019

Sitting in a boat, in the mud. A long day with Tess.

#241: I Want to Meet Governor Janet Mills Aug 28, 2019

Janet Mills. She's the governor of our fine state of Maine. And I want to meet with her ASAP to talk about Tess.

#240: Becoming a Noticer Aug 21, 2019

Keep your eyes peeled, my dad used to always say in the car when we were driving around, on the hunt for our destination. And I find these days, I'm still doing that.

#239: The Walnut Is Laughing Aug 14, 2019

Working on a new skill with Tess. One that you and I and almost everyone does several times a day.

#238: Megan Aug 07, 2019

The end of an era. With an awesome person, who's logged THE most hours with Tess.

#237: Sugar Baby Jul 31, 2019

Wacky music and clips of a possibly over-sugared kid. These just might be the key to getting Tess's attention.

Have you left me a review and rating on iTunes yet? Click here.

Hey! Please reach out to a friend and share the six essential episodes about Tess. They’re here: http://www.portlandrootsmedia.com/stronger-every-day-blog/2018/11/15/catch-up-with-tess

Want to hear more about Tess’s adventures with Gemiini? Listen to episode 221, “Jackpot,” which is available here, for zero dollars: http://www.portlandrootsmedia.com/strongerpodcast/2019/4/10/221-jackpot

#236: Worst Procrastinator Ever Jul 24, 2019

Abundant sunshine, a long overdue task, and a chance meeting that makes me feel better about some heavy stuff.

**#235: Oh No You Didn't** Jul 17, 2019

A massive failure, by me, with Tess feeling quite amused about the whole thing.

Hey, if you're affected by rare disease, I want you to know about this organization my friend Seth Rotberg started. It's called **Our Odyssey**, and it connects **young adults with support**, social and emotional, in the hope of improving their quality of life. **This is hard, people.** Rare disease is hard. It's especially hard if you're **doing it alone**, and you're **not connected** to anyone else who can understand what you're going through. So if you're a **young adult and you're affected by rare disease**, check out Our Odyssey. You can find them at OurOdyssey.org.

#234: Island Time Jul 10, 2019

Holidays aren't always Tess's favorite. After all, they interrupt something that is her favorite: the routine of going to school. But this year on the 4th, Tess had a blast.

#233: Happy 4th Jul 03, 2019

Summertime for Tess. Our girl has been a busy bee, to say the least.

Help Nick’s family get answers about Cameron by clicking and sharing. #HelpCameron https://cameronsmystery.com/

#232: After the Award Jun 26, 2019

Tess stood up in front of her class and got an award last week. It was amazing to see, but my favorite part was what happened just after that.

Did you know that we recently found our 50th USP7 patient? We did. Hooray! Remember, Tess was the 8th known patient in 2015. One of the ways we find more is through your help, Tess Army. You've been with us on this journey, and we feel it. We feel your love every time you share this podcast with someone. So keep it up. Keep sharing and help us get our next 50 USP7 patients. You guys are awesome.

#231: Breakfast in Bed Jun 19, 2019

Hope Solo. Dennis Eckersley. Dominik Hasek. All of these people have made great saves. But they got nothing on my wife.

Hey, if you're new to the podcast, you know what would really help me? Give me a quick review and rating on iTunes. It really helps people find my show and gets the story of Tess out there to more folks. Thanks!

Follow me to get the latest on Tess:

Facebook | Twitter | Instagram | Spotify

#230: The Sovereign Nation of Tess Jun 12, 2019

How do you explain Tess to someone who doesn't know her but needs to get to know her? What details would you include?

#229: Science to the Rescue Jun 05, 2019

Quick one for ya this week. Update on some super-dope studies happening with USP7.

#228: Just the Check Please May 29, 2019

It's like a Samuel Beckett play. A tiny room. People waiting. Including Tess. Have they always been in this room? Will they have to wait for all eternity, because they wait for something that will never take place?

#227: Get a Move On May 22, 2019

Tess was nagging me this week. Really. She's like, Daaad! Come onnn!

#226: I'm a Big Fan May 15, 2019

Last Sunday Tess had a big day.

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