Phi Theta Kappa – Thomas Darnell With Basil Working Hard

July 18 2023

This arrived in the mail just before we left for our trip. I’m so happy for and proud of Thomas that I could just burst, showering anyone near with love confetti. ❤️🎉❤️

July 21 2023

Umm, sir, what are you doing?

Came home from my workout to this. Chad Basil the First, so darn cute, even when he’s on the table, and he’s not supposed to be. 🖤🖤🖤

Throwback Post: Beautiful Sky with Eggnog, Books and Phantom Tea

**THROWBACK POST**

December 2 2014:

Great autumn sky 2014 …. So beautiful!


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December 2 2013:

Thank you Manal Toppozada for having me come speak to your undergrad med class today at UNR again this semester. I so much enjoy giving students a parent’s view of advocacy for children with special needs and give them an opportunity to walk in our shoes, if only for a few minutes. This time they got the added benefit of seeing my eyes sweat when talking about receiving THE phone call … the one delivering the news when Lillian was 3 years old. Oops!! Guess I’m just in an eye sweating mood!!! Looking forward to next semester’s class! They ask such GREAT questions! xoxo

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Trying my hand at dairy free eggnog … Tastes yummy so far!

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I’m a wee bit late but here’s my Phantom Tea picture … Yummy sipping chocolate in the cute teacup I got in England back in 2000. This is The Registry’s annual fundraiser … if anyone would like to make a donation in Lillian’s name visit the website at http:\\www.Chromosome18.org … Thanks tons y’all!


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December 2 2012:

$5 bag sale adventures!!!!


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Vanilla Cinnamon with a dash of almond milk … YUM!! My tea of choice for the annual Chromosome 18 Phantom Tea!! Research performed by The Registry & Research Society benefit all with chromosome abnormalities .. You can help out for as little as $10 and have some tea in the warm comfort of your own home!! Read more about it here … https://secure3.convio.net/chr18/site/Donation2…


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Just received word that we’ve successfully infected another person with The Team TLC Happy Virus!! WooooHooooo!! Thank you tons to those of you who reach out via FB message or email to let me know we are making a difference in your life!! Big warm and happy HUGS y’all!

Throwback Post: Speaking of Talking

**THROWBACK POST**

December 2 2010:

WooHoo Y’all! The RN&R article about Turning Views Foundation and Different iz Good came out today! Kat did a great job of condensing the ton of information I spilled out to her!

https://www.newsreview.com/reno/something-to-talk-about/content?oid=1883366

By Kat Kerlin
[email protected]
This article was published on .

Lillian Darnell holds the iPhone that, though speech impaired, allows her to talk through a special app. Her mom, Camilla Downs, stands beside her.

PHOTO BY KAT KERLIN

Lillian Darnell was 3 years old in 2004 when her mother, Camilla Downs, received a phone call from her pediatrician.

“It was a phone call that landed me in a place I never thought I’d be,” says Downs.

Lillian had been born a month early, so Downs attributed the developmental delays she’d noticed to the fact that she was a preemie. But that day, she discovered Lillian had a chromosomal abnormality, so rare it didn’t really have a name: It’s just called 18p-, a deletion of the short arm of chromosome 18.

“The main way it manifests for her is communication,” says Downs. “Everything is in her mind, she just can’t articulate it.” Lillian is about 90 percent unintelligible.

Before this year, Lillian, now 9, had been carrying around a heavy, clunky “augmented communicator” called Dynavox. She actually had to pull it on a cart behind her at recess. Then Downs heard about Proloquo2Go, an iPhone app that could do the same thing, but on a smaller and, let’s face it, cooler device. She bought Lillian an iPhone and had the app installed. Lillian carries it in her purse, which has a speaker clipped to it to make her “voice” louder. There are programmable buttons on it for typical things she might say in class or to her friends, as well as a section for things she could say in emergencies. For other things she wants to say, she can type it into the keypad and press “speak.”

The whole thing cost less than $1,000. Compare that to the $5,000-$10,000 people pay for augmented communicators. However, health insurance and Medicaid will pay for those clunky, expensive devices, but not for iPhones, iPads or iPod Touches that could have apps like Proloquo2Go installed on them.

“There’s no reason these kids should have to wait to have a modern way to communicate,” says Downs.

The school district will provide an iPod Touch or an iPad to the speech impaired, but not an iPhone, which Downs wanted Lillian to have for emergencies. So she decided to start a nonprofit, Turning Views, which encompasses the Different Iz Good movement to help kids like Lillian. Key to that is “Lillian’s Voice,” the recycling program that takes used iPodTouches, iPhones and iPads and gives them to children who are speech impaired or nonverbal. She accepts “last generation” devices, meaning more recent models, as some older ones may not be able to have the app installed on it. Look for “Lillian’s Voice” drop-off boxes at New2U Computers and Mac-O-Rama. (See column note for details.) People can also donate money or gift cards from iTunes or Apple on the nonprofit’s website, www.differentizgood.org.

“People still haven’t caught on that these are more than just phone and music devices,” says Downs. “It’s not just the app itself, but the shift that has occurred in society. It’s a communication revolution, in a way, that includes the nonverbal and speech impaired in a way they never have been before.”

What does Lillian have to say about it? She punches some keys on her phone, looks up, nods her head and presses “speak”: “I like the iPhone.”

2023 Chromosome 18 Conference in Columbus, Ohio – Last One

July 13 2023

So much love,
So much joy,
So much good stuff.

This is Jonah. He is amazing, and I love his outfits, and I love his wonderful family. ❤️❤️❤️

Amy, Julie, and me. Our girls love one another, and I love these ladies!

Tara and Isaac. Thomas and I love you!!

And the happy winner of the book package! Thank you to the authors who contributed your books!

Swimming before leaving for our flight later today.

Thomas went with Christopher and his dad, Bill, to the Air Museum, followed by lunch while we hung out here with Liz, Charlotte, and Kelsey. We ordered pizza and had lunch by the pool.

Bill invited Thomas to come along with he and Christopher to the National Museum of the US Air Force. They had a good time. 💜🌿💜

2023 Chromosome 18 Conference in Columbus, Ohio – Part 3

July 12 2023

Look at this amazing book and card package in the silent auction! Thank you to the authors who contributed to help support the Chromosome 18 Registry & Research Society.

C18 Sibling Panel: All of these sibs are amazing. However, I am deeply biased towards the one on the far right. Thomas, you bless my heart beyond comprehension. You did an amazing job, articulating your points beautifully, and that’s probably the first time in history that the word innocuous was used on the sibling panel.

Thank you to everyone who came to me afterwards with such lovely words to share about Thomas, and my parenting skills. ❤️❤️❤️ Everyone very much appreciates your authenticity and transparency, Thomas. Kendall Powell is an amazing person, and absolutely shines as the sibling coordinator. Thank you for loving us, Kendall!

Getting everyone ready for group photos. 18p- over here!!! The hardest part of the conference! 😂🤣😂

And photos with the amazing Millers. Love you Matt and Julie. You two did a wonderful job hosting this year. I love me some Miller time!! ❤️❤️❤️

2023 Chromosome 18 Conference in Columbus, Ohio – Part 2

July 10 2023

Quick walk this morning before helping facilitate the New Family Orientation. Gorgeous weather and grounds.

July 11 2023

Beautiful spot for coffee this morning. I feel like a bit of relaxing this morning.

July 11 2023

Ladies night was so much fun!!! Talking, laughing, and drinking with such beautiful people. I sat back at one point just scanning the room, looking at everyone deep in conversation, laughing, smiling, hugging; and I thought to myself, “This is incredibly beautiful.” ❤️❤️❤️

2023 Chromosome 18 Conference in Columbus, Ohio – Part 1

July 8 2023

Team TLC is on board, on our way to the C18 conference in Columbus, Ohio. ❤️❤️❤️ Thomas is in front of us. By the way, Reno-Tahoe Airport is a cluster fuck right now.

Beautiful Reno sunrise as we left this morning.

July 9 2023

Just back from my first walk in Columbus. Stunning grounds. And it wasn’t too hot. Bonus!! Not sure these folks have experienced a tattooed woman walk-dancing around the grounds. Now they have!

July 9 2023

Photos from today. These people are so precious and amazing.

I absolutely love the photos of the Giggling Trio – Lillian, Macy, and Lauren. They light up around each other, and it is beautiful to experience. ❤️❤️❤️

Photos taken by Rick of Positive Exposure