I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called USP7. She's different. And now, so is everything else. #USP7 #autism
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The Portland Roots Media podcast is a fascinating and informative show that covers a wide range of topics. Hosted by knowledgeable and engaging hosts, this podcast offers in-depth analysis and discussions on current events, social issues, and local news in the Portland area. Whether you are a resident of Portland or just interested in learning more about the city, this podcast provides a unique perspective that is both entertaining and educational.
One of the best aspects of The Portland Roots Media podcast is the diverse range of topics covered. From politics to culture to environmental issues, there is something for everyone in each episode. The hosts do an excellent job of presenting different viewpoints and fostering thoughtful conversations. They also bring on expert guests who provide additional insight and expertise on various subjects. This variety keeps each episode fresh and ensures that listeners are constantly engaged.
Another standout aspect of this podcast is the high production value. The audio quality is top-notch, making it easy to listen to and follow along with the discussions. The hosts have a great rapport with each other and their guests, which adds to the overall enjoyment of the show. Additionally, the show's format allows for deep dives into topics while still being accessible to listeners who may not be familiar with every subject discussed.
While there are many positives about The Portland Roots Media podcast, one potential downside is that some episodes can be quite lengthy. While this allows for thorough exploration of certain subjects, it may be difficult for listeners with limited time to fully engage with longer episodes. However, the wealth of information provided in these longer episodes can make up for their length.
In conclusion, The Portland Roots Media podcast is a must-listen for anyone interested in staying informed about local news and social issues in the Portland area. With its diverse range of topics, engaging hosts, and high production value, this podcast stands out as a valuable resource for listeners wanting to learn more about their community.
This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility.
This week, Tess has a life-threatening event, at a time when we're very far from the closest medical facility.
This week, we're away on a ski vacation as a family. Let's check in with Tess.
This week, we're on pins and needles, waiting for a very special milestone.
This week, the illness continues, believe it or not. We'll check in on our girl.
This week, someone in our house is considerably under the weather.
This week, got a few fun stories for ya. Vignettes, if you will.
This week, a nifty tech device gets strapped to Tess's wrist.
This week, an emerging artist in Maine works with multiple media and begins an exhibition at a local gallery.
This week, in the backseat of a car in Maine, someone had something to say.
This week, this very day in fact, Tess is celebrating a special birthday. This is sixteen.
This week, we're talking about Tess's high school experience. She's been a freshman for about 8 weeks now, so I'll tell you how it's been for her so far.
There are four little things you can do as a Hao-Fountain patient to move things forward in a huge way. I'm gonna tell you how these four went for Tess and why it matters.
Tess wanted something recently, and she used all her abilities to let me know what it was.
We took Tess on a special outing, somewhere she'd never been before.
It's that time of year, and we just held our annual Hao-Fountain conference.Hao-Fountain patients and families: please SIGN UP for our October 2nd Zoom about MATRIX, where we can help you sign up for Matrix and answer your questions. Sign up here: https://usp7.salsalabs.org/MatrixSignupandQA
It's that time of year, and we just held our annual Hao-Fountain conference.
Tess got invited to a birthday party and she was pleased as punch.
Recently Tess had a seizure and went to the ER, so I want to tell you more about it.
Recently Tess had a seizure and went to the ER, so I want to tell you about it.
Today I'll be telling you the second part of our recent trip to Syracuse.
Today I'll be telling you the first part of our recent trip to Syracuse.
Today I'll be telling you about some locations that Tess enjoys.
Today I'll be telling you about Tess's schedule on a typical day.I wrote about Tess's special diet on my blog here and made a two-part Stronger Every Day podcast episode you can find here and here.
Today I'll be sharing about a certain radar that Tess likes to use.
Today I'll be sharing about summer and what's working for me so far.Super Focus: Flow State Music - Alpha Binaural Beats, Study Music for Focus and Concentrationhttps://youtu.be/p2_zDvtPQ-g?si=vINWreezp6K2tp5M
Today I'll be sharing a bit about Tess's progress when it comes to spoken language. She has a language deficit called Mixed Receptive-Expressive Language Disorder.
Today I'll be sharing a bit about Tess's favorite thing to watch.
Today I'll be sharing a bit about our family's recent trip to Iceland.
Today we're doing part two of our deep dive about Tess's sensory issues.
Today we're doing a deep dive about Tess's sensory issues.
Today we're talking about something that's been keeping Tess up at night. Literally.
Today we're talking about a few of Tess's favorite objects.
Today we're talking about unhappy Tess. Annoyed Tess. And the mysteries of it all.
Today I'm gonna tell you about Tess's most recent IEP meeting and something we talked about for the first time in her education.
Today I'm gonna tell you about Tess's growth and some new clothes.
Today I'm gonna tell you about a new person who's entered Tess's life.
Today I'm gonna give you the post-voyage report about Tess in Montreal.
Today we're gonna talk about Miss Tess's travel to the nation of Canada. This isn't a bunch of tips and tricks about how to travel with someone who has autism. BUT if that's what you're looking for, check out: SED 507 - Traveling with Autism: 14 Essential Hacks for a Smoother Journey Part 1 of 2SED 508 - Traveling with Autism: 14 Essential Hacks for a Smoother Journey Part 2 of 2
Today we're talking about Tess being sick recently.
Today we're gonna talk about Miss Tess's recent visit to the dentist.Many thanks to the New York Times for writing about dental patients with disabilities back in 2019, and NYU's new facility designed to help them: "Saving the Teeth of Patients with Special Needs," by Catherine St. Louis, 5/2/2019.
Today we're talking a bit more about basketball and what it means to Tess.
Today we're gonna talk more about the podcast The Telepathy Tapes and how it applies to our Tess.
More patients found! Not one but TWO groundbreaking scientific projects underway! And a new paper that could contain the key to our cure—something that might even be in your medicine cabinet. Today I'll be giving you an update on some of the thrilling developments of our foundation in our quest for a cure for Tess and the other patients.
Today I'll be telling you more about Tess playing basketball, and a new development for her on the court.
Today I'm talking about the ability to read minds. And how it might affect our relationship with Tess. I've been listening to The Telepathy Tapes, a podcast by Ky Dickens about how certain nonspeaking people with autism have displayed the ability to read minds.
Today we're talking about an irksome behavior of Tess's, something that's happening more and more frequently, and what it could mean.
SED 527: Why I'm Changing the Show BackLast summer, I made a big change to this show. Now, I'm changing it back. In this episode, I share why—and how a recent ski day with Tess, in zero-degree weather, reminded me of something important. Tune in to hear the full story.
Stronger Every Season: A Caregiver's Mindset ShiftWhat if the way you think about aging is making caregiving even harder?If you're a caregiver, you know the toll it can take on your body—aching muscles, exhaustion, and the creeping fear that one day you just won't be able to do it anymore. But what if there's a different way to look at it? A mindset shift that keeps you strong, capable, and even optimistic?Discover how changing your perspective on physical decline can make a huge difference in caregiving.Learn how building a personal ‘support team' can keep you strong and resilient.Get inspired by a powerful reframe that turns dread into determination.Hit play now to hear a short but game-changing episode about staying strong, shifting your mindset, and bringing the heat—season after season.
Max Flex: The Rare-Disease Parent's Superpower for Navigating UncertaintyHow do you keep going when rare-disease parenting constantly upends your plans?If you're raising a child with a rare disease, you know that unpredictability is the norm—canceled plans, last-minute doctor visits, and constant pivots can feel exhausting. In this episode, we explore why these disruptions hit so hard and how a simple mindset shift can help you regain a sense of control.Understand why rare-disease parenting makes traditional planning so difficult—and what to do about it.Learn a new way to approach daily schedules that reduces frustration and stress.Discover how embracing "Max Flex" can help you feel more confident and prepared, no matter what comes your way.Listen now to learn how rare-disease parents can build a mindset that turns constant disruptions into opportunities for strength and adaptability.
Stepping Forward: How Shoes and Therapy Transformed Tess's ConfidenceWhat if a simple tweak in your child's footwear or a new approach to therapy could drastically improve their confidence and mobility?For parents of children with rare diseases, finding solutions to challenges like mobility and physical discomfort can feel overwhelming. In this episode, you'll learn how small adjustments can lead to significant progress, helping your child feel more secure and thrive in their daily life.Discover a groundbreaking physical therapy technique that could change how your child moves and feels.Learn how specific shoes can impact your child's stability, confidence, and overall comfort.Gain actionable insights into ways you can support your child's mobility and independence at home.Hit play now to uncover simple, practical changes that can transform your child's mobility and confidence starting today!
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