Throwback Post: The 2013 Chromosome 18 Conference

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July 26 2013: Almost ready to board …. The 2013 Chromosome18 conference adventure has begun!

Team TLC at 30, 000 feet … Overflowing with gratitude for all we are blessed with!

Next part of the 2013 Chromosome18 conference has begun … Las Vegas to Atlanta …. I’m in the middle of a Thomas and Lillian sandwich!

Last stop today on the 2013 Chromosome18 conference adventure …. The adventure continues tomorrow! Atlanta to Savannah!

July 27 2013: Next phase of the 2013 Chromosome18 conference Adventure …. Planes, buses and automobiles!! Planes are done, now for the bus and then automobile in Savannah! Now, this is truly an adventure!

Team TLC is on the bus! A first for all 3 of us … pretty cool! Plugins at every seat and free WiFi! Onward with the 2013 Chromosome18 conference adventures! ETA in Savannah is 1:30!

We made it to Savannah! Thanks Mark Sogard for picking us up at the bus station!!! The adventure TO the 2013 Chromosome18 has come to an end! About to check in at The Marriott!

Grateful for yummy fulfilling food …. had our 1st meal of the day! Been giving and getting lots and lots of hugs! Beautiful hotel, beautiful riverwalk.

Hmmmmm ….. They had to make a law for this? Hmmmmmmmm ……

July 28 2013:

Beautiful walk in Savannah this morning. Nature had some heart warming beauty to share. Absolutely AWEsome!!!!

Swimming adventures for Team Member T & L last night! They both slept sooooooooo good!

Yum!!!!!! I’ve got crab in my hair and all over me!!! Muscles, clams, shrimp and crab adventures!!! Thomas loved the shrimp, muscles and crab! Lillian had fries! Overflowing with gratitude …. And seafood!

FUN 1st night y’all! Thomas kissed a parrot and pet a tortoise! Lillian hung out with her friend Katie!

This is how Team TLC rolls … we come to Savannah, Georgia to the Chromosome 18 conference and spend 45 minutes on our deck playing with shadows! Thank you to our beautiful neighbor, Robin Krueger, for playing with us and lending her flash so we could have darker shadows. Huge Thomas, Camilla’s boot, a gigantic heart, and Robin’s bunny!

August 1 2013:

Thomas with his friend Oliver yesterday in the hotel restaurant, blue …. Thomas just loved Oliver …. Oliver was telling everybody about Thomas, even the wonderful lady working behind the lunch buffet counter. I had Thomas go introduce himself to her so she would know who Thomas is! When I picked up Thomas yesterday from the care/playroom, Oliver showered him with kisses on top of his head. Thomas doesn’t even let me kiss him that much! Oliver loves Thomas and Thomas loved playing with him! I’m sure Oliver’s parents are tired of hearing Thomas’ name!

Farewell dinner and dance …. Team TLC‬, Lillian, Katie, and Rebecca and Thomas and Kellan Guthrie! FUN and LOVE!

Last lunch in Savannah ….. YUM!! So grateful!

More farewell dinner and dance adventures … Lillian, both Katie’s, Rebecca, Kaylin, Remy and I cannot remember the other sweet young lady’s name …. Thomas playing the guitar, and Lillian and Pam.

River ferry ride adventures for TEAM TLC! That’s our hotel as we pull into the ferry landing. Ran into IM too!

Thank you to Jon Baker and Kaitlin Baker for taking Team TLC to the Greyhound bus station this afternoon! We are grateful for and blessed with the love and kindness of the entire Baker family! Team TLC loves all y’all ….Abby Baker, Missy Baker. We’ve got about 30 minutes left before we arrive in Atlanta.

C18 2013 Trip Katie and T and L

Thomas on dolphin cruise …

August 1 2013: I love this AWEsome man … He listened to his beautiful soul years ago about the true meaning of beauty and simply exudes love with every smile and hug he shares. Rick Guidotti lives and breathes and shares his passion ….. and it benefits humanity by creating a positive shift in this World.

C18 Trip 2013 Camilla and Rick

July 30 2013:

Good Gosh! Mother Nature shares some beautiful stuff down here y’all! It’s gonna be a GREAT day! Grateful for waking up this morning, the air I breath and being able to go for morning walks!

Words of Wisdom from the Self-Advocates during their presentation this afternoon. As I listen and take in their wise and knowing words, I think to myself ….. “What the heck excuse have you got for anything!”

We all have something that is similar about us. -Megin Smith
Don’t give up, keep on trying. -Katie Bentley ( Rhonda Bentley)
Life is complicated but hey, no one’s perfect. -Megin Smith
Don’t listen to anyone putting you down. You can do it! – Liz Cody
Have fun and be positive
Have fun and don’t stop – Don’t know who made these last two comments … had my eyes down typing!

Candy factor tour adventures for Team Member Thomas! He got paired with older sibling Dalton. FUN! Katie wanted her picture taken with T and L. She loves them …. and they love her. Me, Thomas and Lillian went out for a walk after dinner …. great time!

After dinner walk along the river adventures for Team TLC! Love!

August 2 2013:

“Idiots” ….. Lillian’s descriptive for Atlanta airport TSA …. I’ll take that Lillian ….

Team TLC at 30,000 feet above New Mexico bringing our 2013 Chromosome 18 conference adventure to a close. I’m a Camilla sandwich again!

Home Sweet Home …. Let the unpacking begin! What an absolutely GREAT adventure!

Conference crashers ….. the kind we like! Some of Rick’s friends live in Atlanta. They came to see him and hang out with us some! They just got married and are members of NOAH … National Organization for Albinism and Hypopigmentation. They met at one of the NOAH conferences! Such great people! What FUN that they got to see Rick Guidotti and hang out with us too!

More day after conference pictures …. Lillian, me, Oliver, Thomas … Me and Susan Moran …. Lane, Colin and Thomas … Beautiful people!

Not so great of a picture ….. yet wise and knowing words from the sibling panel ….. “Siblings are okay with things being DIFFERENT as long as their needs are met.” – Catherine Cody Larson …… “There will be more people who stand up for them than make fun of them.” – Unknown ….. and lots of “They can do lots more than we give them credit for” ….. Love these siblings!


August 3 2013:

Last of the Savannah pictures …. More that I took on my morning walks … Such a GREAT time!!

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August 3 2013:

GREAT picture Mark! I was just thinking that I should have taken a picture of this! YAY YOU!! This was our lunch buffet … 402 people!

Photos from the open album  go here …

Last of the 2013 Chromosome 18 conference pictures y’all!

Throwback Post: 2012 Chromosome 18 Conference – San Antonio

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Link to the article on CD

July 28 2012:

We braved a long walk down The Riverwalk to get some food…

Halfway there y’all!! Having some lunch while we’re waiting.

We made it!!!! Wahoo!!! Awesome view from our room. Time for some food!!!

Look close … Team Member T is with us!!

WOW!!!! This salsa is hot!!! Yum!!!!

Team TLC takes movie night with us wherever we go … Charlotte’s Web in San Antonio!!! We miss you Mr. T …

July 30 2012:
Another Thomas and Susan sighting!!!
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Ladies night …. River boat ride with margaritas … Happy Birthday Catherine!!!
Look!!! It’s Susan again!!! Wow! She’s making her way around this conference!! Now she’s hanging with Lorie!!
More ladies night festivities … I LOVE these people!!!
August 2 2012:
Had to have some ribs before we left …. Oh my goodness!!! YUM!!!
One last time in the pool before we say adios to San Antonio!!
Almost ready to board …. Just finished off the rest of our ribs .. I wasn’t leaving those behind!!
Made it home … Wonder if our luggage made it?? Yay for being home!!!
August 3 2012:
August 11 2012:

Throwback Post: The Words Just Fly Out of One’s Fingers

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August 21 2015:

Just emailed the article for the next issue of The Australian Institute of Intellectual and Developmental Disabilities’ journal. Whew! 4,000 words in a week and a half. You know what that tells me? I can do it and I do have the time for that next book. YES! That felt great and I LOVED writing it! Completely and totally all from the heart … amazing how the words just fly out of one’s fingers when the mind is not allowed to give input! HA!

**December 2 2021 Update**

The article was published in November 2015. You can read it here …

My Journey With Intellectual Disability and Relationships – A Short Memoir

News: Camilla as the Volunteer 18p- Coordinator

October 30 2021

Some news to share. I’ve taken on a volunteer position with Chromosome 18 Registry & Research Society.

Hi. I’m Camilla Downs and I’m looking forward to my role as the new 18p- Coordinator. My name is Camilla Downs (pronounced like Pamela but with a “C”), and I’m a mom to 20-year-old Lillian Darnell and 16-year-old Thomas Darnell.

Lillian has 18p-, being diagnosed when she was 3 years old after the pediatrician suggested genetic testing, due to Lillian being behind in more than three areas of development. The pediatrician called me as soon as she got the results, letting me know over the phone, rather than postponing until we could get in to see her. After pulling myself together, I found the Chromosome 18 Registry that night while searching online. This was before Facebook, and social media groups and I joined The Registry shortly thereafter. I spent time observing the conversations in the Yahoo listserv before jumping in, introducing myself, and asking questions.

The main ways 18p- has manifested throughout the years for Lillian are speech difficulties, chronic stomach pain, proprioceptive issues, balance and depth perception, difficulties with executive functioning skills, and inability to process emotions. In hindsight, I can see she exhibits many symptoms of autism. That is currently being addressed. In the past, she has done speech, physical, and occupational therapy. Currently, she receives craniosacral therapy and just began seeing a therapist begin work on her phobias. All of these issues are still with her.

I divorced in 2007, moving to Reno, Nevada from … Follow the link to read the full announcement …

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Throwback Post: The Island Princess and the Prince by Lillian Darnell

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August 29 2013:

Found these two angels sitting next to the computer as I was turning the lights out for bed. Asked Lillian if she put them there and she told me yes and that they were giving her ideas! Turns out they indeed were …. (I think I may have some angel bears sitting next to my computer tomorrow!)

The Island Princess and the Prince
Based on stuffed bears
By Lillian

Long ago, there was a queen named Lila and had been wishing for a baby for 4 years now and she got her wish. She was so happy that she named the baby “Princess Lila 2”. But she had lost her daughter and she was very sad…

10 years later….

Lila had thought her name was Lil and she was surprised to see that she could talk to animals.Then one day a stranger named Frank who is actually King of where she used to live. He wanted her to come but her animal friends wanted her to stay. Then she remembered her name was Lila for short because her real name was Liliana. Then she met her mother then after they had reunited and then Frank and Lila got married and lived happily ever after.

Jack’s Adventure of Magic – Lillian Darnell

August 5 2021

New story from Lillian Darnell …

Once there was a boy named Jack who lived with his mystical family. Jack loved his mystical family but he wished he could have mythical powers like the rest of his family. He felt jealous of his family so one day, he headed off to Magical Unicorn Island.

He stopped at an island called Apple of Music to visit some family relatives. His family relatives said, “Get some rest and watch out for flying manta rays.” And Jack was very confused, about what his relatives said.

But he got some rest for the next day anyways. When Jack woke up the next morning, he was surprised that no one was on the island except for a few little creatures who were called glitter critters.
Jack wondered if he could test out his mythical powers on the glitter critters. He decided to try. So he began to focus and to his surprise, his mythical power made the glitter critter glow and fly for a bit before the power faded into the midst of the magical sun ….

Jack’s Adventure of Magic

 

The 2021 Chromosome 18 Closer Than Ever Family Conference

July 11 2021

The yearly conference has kicked off! Sad that we’re not in person again this year. Fingers crossed for next year! Thank you to those who have worked hard organizing this event.

July 12 2021

2021 Chromosome 18 Conference today and tomorrow. You would think with Lillian being 19, the conference material would not be useful for us any longer. Nope. I’m getting very useful information, and asking lots of questions. Incredibly helpful. Thank you C18 Registry & Research Society.

July 13 2021

We had such a wonderful session this morning for parents/caregivers of self-advocates with 18p-. We missed you Katharine Newman .. So sorry you were having technical difficulties. This is such a beautiful group of humans. So blessed to be a part of it.

During our session, the parent presentation to classrooms came up. So I thought it a good time to repost this for anyone who is not attending conference, or for friends who may be dealing with something other than a chromosome 18 difference.

Here’s one of the last presentations I gave on Lillian’s behalf –

(September 2014) – Lillian’s birthday and the dawn of a new school year are upon us. This was the sixth annual “Lillian” presentation to her classmates. It began in the first grade because her classmates kept asking me “why” questions about Lillian. I figured why have them wondering and drawing erroneous conclusions and choosing to judge her when I can try and help them understand.

The presentation went GREAT! I got lots of questions and one sweet young man bought a copy of my book, D iz for Different, for his aunt. He has a cousin with 22q-. So sweet!

I like to share my presentation publicly because so many other parents are curious about this and some want to take the plunge and do their own presentation. Please use it as you need. I only ask that you let people know where you got the idea or information.

These are my raw notes for the presentation. I add to or skip information as I feel needed.

Lillian and Being Different

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.” – Henry David Thoreau

(Slide 1) Chocolate Candy Recipe ~ Each chocolate has a recipe – all use cocoa, and dark or milk chocolate
What ingredients make chocolates so different?

Fruit – Cherries, Coconut
Nuts – Almonds, Cashews, Peanut, Hazlenuts
Flavorings – Vanilla, Orange, Strawberry

We are like chocolates – we each have our own special recipe with special ingredients that make us DIFFERENT, UNIQUE, BEAUTIFUL AND AMAZING.

Chocolate recipes are usually in a book or written on paper or even in someones head. Our recipes for our bodies are in our genes.

Genes are our recipe for our bodies and they decide:

(Show book … “You’re Full of Genes” by Claudia Zylberberg Ph.D.)
Brown or Blue Eyes
Short or Tall
Straight or Curly Hair
Need Glasses or Not
Have Freckles or Dimples
Have small feet or big feet

Genes decide EVERYTHING about you and your body and how the parts should work. If some genes are missing or duplicated this decides whether something with our body doesn’t work.

Another way to explain is that genes are all of the instructions the human body needs to function. All of our bodies genes are organized into structures called chromosomes.

(Slide 2) Let’s look at this like a Chocolate Candy Cookbook. If the recipes are genes, then each chapter (Chocolate with Nuts Chapter, Chocolate with Fruit Chapter) is like a chromosome. The chapters, or chromosomes, make up the book – in our case, the book of life.

(Slide 3) Chromosome, DNA, Gene Slide

(Slide 4) There are 22 numbered pairs of chromosomes, plus two sex chromosomes (male or female). Each chromosome is numbered and each chromosome has a waistband. The waistband separates the short arm (p) and long arm (q) of the chromosome. (slide 4)

(slide 5) Lillian has a very unique recipe (genes) unlike any of you. A section of her recipe is missing – deleted (called a chromosome abnormality). A piece of her #18 chromosome is missing – the short arm of her #18 is deleted, so it’s called 18p-.

What happens if you leave out an ingredient for a recipe?

(slide 6) Lillian has to work harder at doing many of the things that are easy for you. She’s had to do this since being a baby. Things like turning over, holding her head up, crawling, walking, making sounds, cutting with scissors, eating, writing, talking.

Lillian’s mouth has to work so much harder to chew and swallow and speak.

Her hands have to work harder to do things like writing, cutting, make crafts, opening packages.
Her body has to work harder at walking, running, and staying balanced.

She’s very nervous, startled and scared about loud sudden noises (thunderstorms, fire alarms for drills, helicopters)

Lillian uses an iPod Touch with an application installed that allows her to type in what she needs or wants to say and press a speak button. Talk about Proloquo2Go. She can also simply type what she wants to say in the notes section or texting section of the iPod. She doesn’t really use P2G as much as she did when she was younger.

Lillian has all the words and things she needs and wants to say in her mind. She has problems articulating it (saying it) clearly.

She is just the same as the rest of you in many ways. She likes to read (mysteries, non-fiction books and friendship books), loves listening to a variety of music, she likes french fries, hot dogs, meatloaf, donuts, and she loves going for walks, taking pictures, and telling and listening to jokes.

Lillian loves the stars, moon and sun (astronomy) and loves dancing and just being silly. She’s passionate about the weather. She tracks the weather every day!

I want to share some ideas and thoughts with you on how you can be awesome, supportive, and helpful friends and classmates to one another and to Lillian! I want to make sure you understand I’m not solely talking about Lillian with how to be supportive. This is for all of you.

Encourage one another if you see any of your classmates or Lillian having a hard time.
Lend a helping hand if you see one of your classmates struggling.

Be patient with Lillian if you don’t understand what she has just said ~ encourage her to use her iTouch to tell you what she’s trying to say or write it down or verbally spell the word for you.

Be patient with one another too.

Take that first step and ask Lillian what she did over the weekend or about her likes, dislikes ~ questions you would ask your fellow classmates and friends. You will have to wait longer for an answer; but the good feelings you get from showing kindness and friendship to someone who is a little different will outweigh the amount of time it takes Lillian to respond.

This goes for any of your classmates. If you see a classmate all alone, take that first step. Go over and start a conversation with him or her. Also remember to respect if that person chooses to be left alone. Some times we just need alone time.

(Slide 7 & 😎 Team TLC and Different iz Good

Now, let’s switch gears a bit and talk about being different. It’s okay to be different. It’s okay to be YOU. We all, at some point, feel like we don’t fit in and feel like we are different. That’s because we are. We are uniquely us, we are just as we were meant to be.

Most times we chase after trying to fit in. Fit in with the cool kids, the loud kids, the fun kids, the popular kids, the crazy kids. You may not understand this now, but chasing after trying to fit in comes back to haunt us later in life. It becomes a habit and then we chase after friendships, relationships, careers. The easiest and most fun route to take in life is to just be YOU and be grateful for whatever it is that makes you YOU!

Before we can accept and be kind to others and to those with differences, we must first … Follow the link to read the full presentation and letter to the parents of classmates …

Latest News: Sixth Annual Lillian Presentation

2021 Chromosome 18 Conference – Thank you to the siblings who participated in the Sibling Panel. Beautiful, and honest, as always. I took this picture before everyone was connected. 💜💜💜 GREAT job Thomas!! xoxo

Whew! All done with the 2021 Chromosome 18 Conference, ending with the always fun Starfish Dance. I’m pooped. That was two full days! ❤️❤️❤️ Love you C18 family. ❤️❤️❤️

Lillian’s Imaginarium – Now on Etsy

May 1 2021

Hey! Hey! Here’s the huge announcement regarding Lillian Darnell’s creations!

I have been working on this for months, with the help of a very incredible friend! Thank you to Kate Raina for guiding me, and getting Lillian’s creations in the proper format for digital printing and professional printing.

There are more items to add, I just needed to get this thing “live” to push myself! If you use this forum, please favorite Lillians Imaginarium. And please let me know if you see anything out of sorts. I have no idea what I’m doing, I just figure it out as I go along. Thanks to everyone who cheers us on, and supports all of our creations. Oceans of love to all of you! xoxo

The Shop is titled, Lillian’s Imaginarium. You can find it here …

https://www.etsy.com/shop/LilliansImaginarium

Full of Imagination and Wonder – Where Would You Fly

And then there was this lovely surprise yesterday … Thank you to Helen of Pink Quill Books!! I appreciate YOU! xoxo

“My review for Where Would You Fly? & Other Magical Stories by Lillian Darnell, 5/5 stars.

The first line of the blurb for this book reads:

Welcome to the radiant imagination of Lillian Darnell, a wonderful and unique human being, the kind who comes around only once in every 56,000 births, as she is missing the short arm of her 18th chromosome.

I thought it was the perfect introduction to my review. Her stories are full of imagination and wonder, as you see the world through her eyes from age 4 (written with a little help from her mum, Camilla) to age 16. Some are gentle guides to mindfulness, others to how to be happy, and most are delightful stories with fairies, unicorns, and magic.

I have to admit I found the Emotions and Feelings part particularly touching, where Lillian explores her own emotions while growing up. Her condition, and her journey which led to the publication of this book, are explained in the introduction by Camilla, who is also a wonderful poet, and a beautiful person. Her dedication to Lillian, and her son Thomas, is evident through the stories Lillian has written and the love she has for her family.

Every now and then it’s lovely to get away from the real world and travel to distant lands with mythical beings. Lillian’s book is a wonderful distraction that you can dip into every now and then, and it will put a smile on your face. Many thanks to Camilla, Lillian and Thomas for the chance to read Where Would You Fly?”

To learn more about the book, go here …

Where Would You Fly