Be Seen and Be Heard – Go Lillian

April 13 2024

I need to turn the spotlight on Lillian Darnell for a moment, as I am super proud of her.

She had a nurse appointment for a shot on Thursday. The nurse asked Lillian if she would get onto the exam table. Lillian began to tell her that she needed the step pulled out. Nurse didn’t wait for Lillian to get out what she needed to say, assumed she didn’t want to get up there, saying, “Oh, you don’t want to get up there? That’s fine.”

Lillian raised her irritated voice, telling the nurse that’s not what she said, and pointed at the pull out step, saying again that she needed it to get up there.

I kept my mouth shut, letting her set fire to the air in that exam room. You go Lillian. You go! Be seen, be heard. (Also, we LOVE nurses. They are amazing!)

**For those who don’t know, Lillian is my 22-year-old daughter. She has a chromosome deletion (18p-), autism, anxiety, and mild intellectual disability. She has articulation difficulties and a stutter, making her difficult to understand. The past few years I have been guiding her to correct others when they misunderstand her.**

 

Monday Night Poetry – Mermaids of the Sea – Camilla’s Birthday

February 27 2024

My poetry friends sang me Happy Birthday last night, and treated me like a Queen. ❤️❤️❤️ Full house last night, with wonderful poetry shared.

Lillian wrote a poem for me; which I shared. It was a hit! (Lillian is my 22 year old special needs daughter) She totally understood the assignment. 😁

The mermaids of the sea bow down
To the queen of the oceans
Bravely dancing

In the seas of love and the heart of kindness
Dances the braveness of the mermaid
Of my heart of friendliness

Swimming into the dancing sea of stars
The mermaid dances to the song
Of life bravely and free
To the mermaids of sea
Lillian Darnell – 2024

I wrote a poem titled, “Me”. I’ll share that one in a separate post.

She Did It! Another One Off the List – Go Lillian

February 15 2024

Finally getting the endoscopy done! The nurses here are amazing. They used an ultrasound to find a good vein so Lillian Darnell didn’t get poked multiple times. Yay Lillian!!! And thank you clonazepam for helping Lillian not be anxious!! 🤣🤣🤣

**And if you’re that lady who sent me an email the last time I posted about Lillian conquering her fears, please Go Fuck Yourself! You don’t know me, or my kids. If you did, you would not have sent me a message that I use my kid for clicks and to get attention. Plus, Lillian is a woman. She is 22 years old! Unsubscribe from my blog and go away.**

The Family We Never Knew We Needed – The Chromosome 18 Registry

December 24 2023

I always love the Chromosome 18 card. Check out the quote on the back of this year’s card. ❤️💚❤️

“The journey from Lillian being diagnosed at 3-years-old to where we are now at 22-years-old would have been immeasurably more difficult and lonely if not for The Chromosome 18 Registry & Research Society. The Registry has blessed our entire family with critical information, research updates, hope, fun, friendships, and the family we never knew we needed.”

Lillian is Ready – Gonna Figure This Out

November 16 2023

There’s no stopping her now! Abdominal ultrasound slayed. Labs from two weeks ago are fine. GI next week, with more labs, and another (different) ultrasound to follow. We are gonna figure out what’s going on so Lillian can fully enjoy this life! I’m just so thrilled Lillian is ready to do this! ❤️🎉❤️

Throwback Post: The Gift of Communication

**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.”

The 2023 Chromosome 18 Conference Begins – The End

July 13 2023

Starfish Dinner & Dance. We love us some dancing!

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. 💜🌿💜

Extra photos:

The 2023 Chromosome 18 Conference Begins – Part 5

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!! ❤️❤️❤️

Self-advocates and siblings. ❤️❤️❤️

Beautiful ladies getting ready for the Starfish Dinner & Dance!

The 2023 Chromosome 18 Conference Begins – Part 4

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.” ❤️❤️❤️

The 2023 Chromosome 18 Conference Begins – Part 2

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!

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. ❤️❤️❤️