Took Lillian to Ms. Kat’s place about an hour ago and now experiencing 3 uninterrupted hours of pure bliss and quiet respite. Now I shall write or read or take a nap or just sit. There’s so much I want to do … I’ll breath into the moment and listen with my heart ….. (Picture at little Washoe lake in October 2015).
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December 4 2014:
Here’s to new friendships! Had such a great time chatting with you Michaela Koenig! YAY!
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December 4 2013:
The other night I asked Thomas what the absolute, most spectacular and favorite thing that he got do at school that day was. His answer was that he got to dig in the dirt today and it was so much fun. They are making a garden area in front of the school and he got to be a part of the students cleaning it up and getting it ready for when planting time rolls around. Love this school!
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Dinner was enjoyed by all tonight! All 3 Team Members could taste the love! T & C loved the mashed potatoes made with sweet potato and russet potato… all smooshed up with 3 kinds of cheese and a little bit of butter. T & L loved the different colored carrots … red, yellow and orange. They still aren’t going for the brussel sprouts, but I keep trying! Meatloaf made with grass fed beef and some other goodies. Soooo yummy!
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December 4 2011:
Chromosome 18 friends … Vanilla Caramel Truffle … Celebrating Phantom Tea in spirit … Sending a donation in honor of Lillian later this week. Any of FB friends want to join? Research performed benefits all with genetic differences.
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December 4 2008:
taking Thomas on a date today – probably to the airport and then the toy store!
Chad Basil the First appreciation post. Basil misses Thomas but he’s powering through Thomas’s absence with lots of naps. 🤣🤣🤣 I’m going to miss my grand kitty when he and Thomas leave for college next summer. 🖤💋🖤
A full day of subbing in Stillwater, then home and cooking dinner while these two made homemade gifts. My heart overflows with joy at their excitement of making homemade gifts. I cannot wait to share with y’all what Thomas made Lillian!!
Wild n crazy dinner of a gigantic pancake turned more into a pancake crumble with apple smoked bacon. Oh well! They loved it, so what the heck!! And now they are playing with Thomas’ cars …. And I was standing right there washing dishes.
Here we are in this tiny 800 sq ft and they are right there under my feet! I looked down at them and thought, “I love this life. Thank you, thank you.” Sending that love out to you! Love, sweet love.
This morning I’m grateful for Discord. Several years ago some teens met in the gaming world. They became friends. They met in person last summer, with one of the parents hosting them in New Jersey.
This summer, a parent is hosting in Philadelphia, with one of the friends coming all the way from The Netherlands! The teens created a group Discord message including all the parents. I love this technology! Thomas gets to have these amazing experiences, and I, and the other parents, get to follow along and know they are safe and happy. Life is beautiful. 🖤🌸🖤
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 .
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!”
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. 🖤🖤🖤
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!
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!
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.”
