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.

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! ❤️🎉❤️

She is On Fire – Go Lillian

November 7 2023

She did it!!! After about 6 years, she finally had labs done! You on fire, gurl!

I found a place that does mobile draws, explained that Lillian has a needle phobia, a pediatric size body, hard to find veins, and a traumatic lab draw 6 years ago. They said they had the perfect person. And they do! Patrick Go is absolutely amazing, and he did a wonderful job! So relieved to have this done. There’ll be more after the GI visit in December. But at least we’ve begun!! Stomach ultrasound next week. 🎉🎉🎉

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.”

A Truly Wonderful Adventure – Where Would You Fly Review

Oh wow! What a wonderful world Lillian transported me to. What a beautiful soul she is!
I loved the beauty, the innocence, the depth and the magic of Lillian Darnell’s writing. This was truly a wonderful adventure into her amazing world and I enjoyed reading every story and every quote. Such beautiful quotes that really touched my heart. – Jennifer Jansen

For more information about Where Would You Fly, go here …

http://www.WhereWouldYouFly.com

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Throwback Post: Reblog: Lillian and Camilla May 2021 Date Day

**THROWBACK POST**

May 25 2021

Lillian and Camilla May 2021 Date Day

It was a momentous date day. First time for Lillian to go inside of anyplace in just over a year. She was excited. Clothes shopping for our first stop.

    

Part 2 through I lost count, as we made so many stops, I’m delirious.

Fries and lemonade at Noble Pie Parlor. Then to pick up dessert. Watermelon macaroon for Lillian, ginger rose dark chocolate for me.

Barnes & Noble, Michaels, and stopping to gaze at the full moon on the way home. (Psst …. I do not like shopping. Drains every inch of energy out of me. I shall crawl into bed, and pass out shortly.)

To see more …

Lillian and Camilla May 2021 Date Day

Reblog: The Wall of Love by Marco Santini Art – Featuring Artwork by Lillian Darnell

February 15 2021

This is such an amazing and beautiful endeavor. Just magical. The Wall of Love by Marco Santini Art, surrounded by artwork submitted from people around the world, including Lillian Darnell, from Reno, Nevada!

If you’re near East Harlem in New York go have a look! Lillian’s artwork is hanging on the far right. Rick zooms into hers at 6:46 if you want to see it. Thank YOU to everyone involved. It blesses me so to see Lillian’s abstract art as part of this installation with the message of love and inclusion. We love and miss you Rick Guidotti and Liz Matejka Grossman!! xoxo Keep spreadin’ the love!

 

Go here to see the full post …

The Wall of Love by Marco Santini Art – Featuring Artwork by Lillian Darnell

Reblog: Generator With an Emotions Authority

December 27 2020

Been exploring this all afternoon. Mainly for Thomas. I’ll explore mine and Lillian’s after I’m finished with his. Deeply interesting, and fun! If you’re familiar with Human Design, what’s yours?

Thomas: Projector with a 4/6 profile and Spleen Authority.

Lillian: Manifesting Generator with a 6/2 profile and Emotions Authority.

Camilla: Generator with a 2/5 profile and Emotions Authority.

If you’re familiar with Human Design, and familiar with us, what do you think? Sound like us?

I spent almost 2 days putting together a report for Thomas, with all of his information. Whew!

 

Go here to see the original post ..

https://theteamtlc.com/2021/02/projector-with-a-spleen-authority-human-design/

 

Throwback Post: Life is Like a Maze – Lillian Darnell

**THROWBACK POST**

I have no idea when Lillian shared this with me. It was either in 2017 or 2018.


(Photo from an October 2020 Date Day with Thomas)

Hey there! Imagine a maze with dead ends and straight lines. Every bad thing that happens takes you to a dead end even if it seems to be leading in a straight path. Every good thing that happens takes you to the correct path. The entrance is you come in the maze as a newborn and the exit is your soul exiting and reentering as someone or something.

I told the shortened version to Camilla this morning and it had just came to me. Think of your life like this and your life should be easier to live. – Lillian Darnell

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 19 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 15 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.