Throwback Post: Patty’s Love by Lillian

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September 29 2013:

Cleaning my email inbox and found this email from Lillian from 2011. I asked her if I could share with y’all and she said “Yes”! So sweet! xoxo

“Patty’s Love and Lillian’s Style, Camilla’s fun, Thomas’s Coolness and Frank’s funniness
Once upon a time there was someone named Patty’s Love was sweet but one day she became sick and Romano’s could not be kind and gentle without her, plus 1 day the Romano’s chimed the butterfly chimes then came up with a idea so they made her lunch and Patty’s Love was better.”

Throwback Post: Halloween Poem

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October 14 2011:

Just got this in my email inbox . . . Hope y’all enjoy it!

Halloween Poem

Black cats cross the street
Black bats fly across the street
White ghost scare the people
Striped candy corn gets eaten
People wear famous costumes
Happy jack-o-lanterns watch as they smile.
Happy Halloween

Lillian Darnell
Fairy Princess

Happy Holidays from 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.”

Throwback Post: Lillian Asks for Reviews

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Hey Chris!

I contacted you back in 2013 to let you know how much I enjoy your books and you sent me an autographed book! I was twelve years old then and am sixteen now! Here are the pictures from that time.

My first book is nearing completion to be published and should be ready by the end of November or some time in December 2017. My mother, Camilla Downs, helped me draft this email.

I was wondering if you’d be interested in writing a review blurb for the cover of my book, “Where Would You Fly and Other Magical Stories”. If this is not something you feel comfortable doing, do you know any other children’s book authors who would be interested?

Here’s a description of the book; which my mom helped with also …

This book is a collection of tales, adventures, and poems she has written over the years about fairies, princesses, food, emotions, and much more (from 6 years old through 15 years old).

The book contains fictional short stories created and written by Lillian over the years. Some of them will definitely have a “Disney-esque” flavor, most have “positive thinking” as the moral, they are fantasy stories with happy endings, and some teach how to mirror animals in processing emotions.

I suppose this may be best described as a fictional anthology of Lillian’s life and imagination to date. The imagination and creative process of one with a chromosome deletion and how she chooses to see the world.

The stories and poems will be edited for spelling and grammar, yet the bulk of the stories will remain as she originally wrote and published them on her blog, a previous blog from when she was younger, and handwritten stories throughout the years.

Here’s one of the tales:

A Happy World

I just got inspired by a drawing I drew. Here’s a story based on the drawing.

One day, a bird picked up a seed to eat. A few minutes later, the bird decided that it wasn’t the right seed. The bird threw it back down. That was the beginning of the Happy World.

As the years past, the tree grew until it had several branches and a strong trunk. The strong tree became known as the Happy Tree. The Happy Tree decided to produce a seed. The seed grew with happiness and love. One day, the seed blossomed into a young beautiful tree that didn’t grow much after that point.

The young tree became known as the Amazing Beauty Tree. The Amazing Beauty Tree saw the Happy Tree. Suddenly, she realized that she wanted to know who produced her. She asked the Happy Tree if it was him who planted her. He said yes and Amazing Beauty wanted to produce a seed of her own.

She let the bird fly the seed to the Happy World. The seed became a thin beautiful conifer tree. The tree produced identical seeds until there was almost no room to plant seeds. After that the trees started planting grass seeds. After the grass had grown, there was no room to plant seeds.

A few years later, the several earthquakes that would become the mountains shook the world. The trees, birds, and grass survived. They noticed something different about the landscape and they saw triangular tall figures. They soon realized that they had seen a mountain. About the same time, their roots filled with water and animals.

One year later, humans discovered the Happy World and decided to make a small town out of it. They also made cars, rockets, and kites. The sun, clouds, rain, hail, snow, and thunderstorms were always there but they were nicer than outside of the Happy World. Everyone lived happily.

If you go into a forest, you will realize that the Happy World is the forest.

(14 years old – July 2016)

If you would like to review a few more stories, let us know.

Also, here’s our first review blurb received from one of my mom’s friends who has his 2nd children’s book debuting in December …

“You can’t help but feel happy and be inspired while reading this book. Lillian’s stories jump straight out of her heart and onto the pages in an authentic, innocent, and loving way.
The world needs more positivity and happiness and her stories are bursting with both. Thank you Lillian!” -G. Brian Benson – Award-winning and best-selling author, actor and TEDx speaker.

Thank you so much for your time!

Sincerely,
Lillian Darnell
One of Your Biggest Fans!
P.S. I cc’d my Mother with this email just in case you want to respond to her.

Throwback Post: A Twist to the Lillian Presentation

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November 2 2014:

Tomorrow I get to give the “Lillian Presentation” again. But, this time it’s in a slightly different context as I’ll be subbing in Candeleria (Thomas’ class of 1st – 3rd graders). When I was subbing there back in September somehow we got on the topic of disabilities. I may have had something to do with that!! 😉

They were hungry for more and had so many questions. I told them I would let Ms. Nicole know they wanted to know more. Tomorrow, they shall learn more! Gonna start by reading, “Spookley – The Square Pumpkin” and then move into the presentation.

I also have some cool books I got when giving the Lillian presentation during her lower elementary school days. “You’re Full of Genes”, “What Happens When People Talk?” and “How You Talk”. Looking forward to a GREAT day tomorrow with the Candeleria students!

Throwback Post: Special Needs Book Review – D iz for Different

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December 3 2012:

Thank you tons and tons to Lorna of Special Needs Book Review for sharing about ‘D iz for Different’!!! Check out the FB page .. GREAT resources y’all!

For my C18 family: Got a link to C18 website and some info about C18 in the article too!

“Feelings of isolation and overwhelm keep special needs parents stuck, especially when coupled with deeply ingrained erroneous thought habits,” said Ms. Downs. “Special needs parents can unknowingly isolate themselves and begin viewing their lives in a negative way. These findings from the discussions and interviews that went to the writing of D iz for Different have been further confirmed by the hundreds of discussions that have been generated since its publication in May of 2012,” she added. Downs wrote and ….

Special Needs Book Review is pleased that yet another author agreed to introduce her book to our readers. This guest post is by Camilla Downs the author of D iz for Different – One Woman’s Journey to Acceptance. Since the book’s publication, Camilla Downs has undergone her own professional transformation with a career change from social media consultant to special needs parent coach and mentor, offering hope and guidance to others parenting kids with special needs. Congratulations Camilla on all your achievements! Thank you so much for sharing your story with us. First, who is Camilla Downs?

Camilla Downs is a special needs parent mentor, guiding parents to help them decrease feelings of overwhelm by shifting their views and showing them they are not alone. Her book, D iz for Different – One Woman’s Journey to Acceptance, was published in May 2012. The book offers Ms. Downs personal experiences in facing and overcoming life’s trials with grit and humor, along with providing practical “Tips for the Journey” throughout the book. Others parenting kids with special needs will be able to relate to Camilla’s journey.

More About the Author

D iz for Different – One Woman’s Journey to Acceptance by Camilla Downs will be of interest to others parenting children with special needs. Camilla Downs is also an advocate of living an adventurous, inspired and different life than expected. With these new life experiences, Camilla has now become a motivational speaker.

Team TLC helps parenting Kids with Special Needs Camilla is mom to 11 year old Lillian and 7 year old Thomas. Lillian is a child with special needs who was diagnosed with 18p- when she was 3 years old. They call themselves Team TLC and share their journey on the Team TLC website .

What Is 18p-?

D iz for Different – One Woman’s Journey to Acceptance- Powerful Truths for Others Parenting Kids with Special Needs by Camilla Downs

Camilla Downs is a Reno-based single mother of two children, one of them with a significant chromosomal disorder. Ms. Downs’ personal struggles inspired her to write D iz for Different – One Woman’s Journey to Acceptance specifically for parents of children with special needs. Downs’ work underlines a clear message: You need not feel isolated and overwhelmed. She offers this group of families, now numbering in the millions in the U.S., inspiration, hope and specific advice and actions to help them become unstuck and more effective in their personal and professional lives.

“Feelings of isolation and overwhelm keep special needs parents stuck, especially when coupled with deeply ingrained erroneous thought habits,” said Ms. Downs. “Special needs parents can unknowingly isolate themselves and begin viewing their lives in a negative way. These findings from the discussions and interviews that went to the writing of D iz for Different have been further confirmed by the hundreds of discussions that have been generated since its publication in May of 2012,” she added.

Downs wrote and self-published D iz for Different in less than a year, prompted by her experiences as a single parent devising creative solutions to life’s challenges, including financial struggles. Friends and professionals who saw the value of a self-help book geared towards parents of special needs children donated services including the book’s cover artwork and design, editing, proofreading, interior layout and design.

Endorsements for D iz for Different include Julie Zigler Norman, author of Growing Up Zigler: A Daughter’s Broken Journey from Heartache to Hope, and Jim Stovall, Emmy award-winning best-selling author of The Ultimate Gift.

Here is a short book trailer of “D iz for Different”

Amazon reviewer, Kathy Buchanan said, “An uplifting and honest book about facing life’s challenges. The book teaches you that how you respond to adversity is within your control and that you can still be happy even when circumstances are less than perfect…”

Camilla Downs author of book on parenting kids with special needsIn another Amazon review, Liz Arches said, “A is for Amazing, B is for Beautiful, C is for Camilla and Courageous…When you see someone who is making such a fantastic job of parenting in difficult circumstances as Camilla is, it can be awesome in the sense of ‘daunting’ as much as ‘inspiring’. It might be hard to imagine that you could ever do anything like the same. But first-time author Camilla is happy to admit that none of this came easy to her, and to acknowledge that it doesn’t come easy to anybody. She just wants to share the positive attitudes and techniques that have worked for her and which might be helpful for other parents, offering parents the opportunity to enjoy every minute of every day with their children. And it’s all presented in short, pithy chapters, so you can get on with that enjoyment all the sooner!”

https://www.specialneedsbookreview.com/2012/12/01/d-iz-for-different-parenting-kids-with-special-needs/

Throwback Post: Speaking of Talking

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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. 💜🌿💜

Extra photos:

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!! ❤️❤️❤️