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. 💜🌿💜

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

Throwback Post: Embrace Life With A Sense of Humor

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December 25 2012:

Thank you, Thank you Team Member L for the face hurting belly laughs. Just had me and Grandma Patty laughing til it hurt trying to figure out what the heck she was trying to say about her fork and oranges.

Having a sense of humor = Embracing Life!!


(Lillian – May 2012)

Throwback Post: Last Night I Got a Tattoo

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July 17 2013:

What I heard her say, “Last night I got a tattoo”.

What she really said, “Last night I had pineapple”.

Many of you know of Lillian’s speech impairment due to a Chromosome 18 deletion. Around here, we choose to make light of it and to lighten the mood we will repeat back what we thought we heard Lillian say.

It always brings laughter and then the serious business of figuring out what this beautiful young lady really said! Onward with the laughing y’all! I’m in a bring-on-the-laughter-mood today … My soul is asking for laughter today!!


(Lillian July 2013)