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: A Twist to the Lillian Presentation

**THROWBACK POST**

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: Speaking of Talking

**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.”

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.” ❤️❤️❤️

Throwback Post: Important Thing by Lillian Darnell

**THROWBACK POST**

July 30 2011:

From Lillian y’all (she just emailed this to family as we are due for another thunder/lightning storm) . . . she cracks us up!! {I know my fellow C18 Parents get how worried this makes her!! Hahahaha}

Important Thing

Watch the clouds form:
Watch for signs of a storm coming. The clouds will begin to build into tall pillars. The sky will darken and a damp feeling will make you skin feel clammy. These are warnings to stay out of boats, get away from water and head for a safe shelter. When safely inside watch the clouds billow up and form huge dark piles of cloud. Soon you will hear the rumble of thunder in the distance, but there is no need to fear when you are safe inside.

Watch the Lightning:
Stay away from windows, but open the drapes and curtains so you can see the lightning flash and enjoy the excitement and beauty of it. The Bible calls lightning God’s arrows. There are many different kinds of lightning.

There is a heat lightning—usually associated with a summer evening storm.
There is forked lightning that splits as it nears the ground.
There is spear lightning that shoots a deadly spear almost straight toward the ground.
Lillian Darnell
Fairy Princess

The 2022 Chromosome 18 Family Conference – San Antonio

July 6 2022

Got here yesterday, but I was suffering from motion sickness from the landing. Thomas and I are waiting for some lovely vegan food to be delivered. Southern vegan food. Yes! Gimme some of that! We’ll go for a river walk later. (San Antonio Riverwalk)

July 7 2022

We finally got out for a short walk.

July 7 2022

Last night and this morning. The Giggling Duo have been reunited.

July 7 2022

Lillian and I went for a walk this time.

July 8 2022

I finally got photos of this trio!!

Lillian and Macy, the original Giggling Duo.

Lauren joined the duo a few conferences back, to make it a trio. Love this trio!!

July 10 2022

More of the trio. Their friendship makes my eyes sweat with liquid love. Thanks to Amy for taking some of these.

July 10 2022

Last day of conference, and Starfish Dance.

More photos taken throughout the event …

Photos taken by Rick of Positive Exposure …


(Entire Group)


(Siblings)


(18p-)

Photos by Others …


(Parent Panel)


(Volunteer Coordinators)


(Sibling Panel)


(Sibs Night Out)

Throwback Post: The 2015 Chromosome 18 Conference

July 24 2015:

We’re off!! Team TLC’s first long distance road trip together. Wahoo!!!

We made it about an hour ago!!

Dinner with the lovely Marianna Kuortti, Shelby Stevenson and Lorie Stevenson. Thanks for the dinner company ladies!! xoxo

July 25 2015:

Happy, blessed, and grateful …. LOVE!! … And some improvising on my part since we have no plates! HA!

Handed out a few Thomas Love Cards yesterday!! YAY!! Thomas shared a hug and a kiss, I gave the lady at the hotel check in counter a hug, and a “You are Awesome!” to our server at the restaurant last night. xoxoxo

Swimming!!! xoxo

Went for a walk today … Just love exploring!!

More exploring and then dinner with the wonderful Natalie Banton, Noah Banton, and Jeff Banton. Thank you for the amazing and fun dinner company! Phone went dead before I got pictures of actual people! Thank you Jeff and Noah for having so much fun with Thomas! My meal looks like a big mess, but it was so yummy! Wild mushroom polenta. Oh my gosh! So good!!

July 27 2018:

So wonderful to meet you face to face!!! Thank you oceans for your kind words!!!

Breaking, Fabulous, Wonderful News!! While I was in a session today, Lillian Left the Room All By Herself, Got On the Elevator, Went to the Lobby, Sat in a Chair and Waited for her Friend to Come Meet Her!!! Holy Heck!!! If you are out and about tonight or having a night in, please share a toast, a hallelujah, and celebrate with me!! Wahoooooo!!!!!!!!!! I’m so excited!!! Now! For ladies night! Time to celebrate with some very amazing and wonderful women!

Look who I ran into in the lobby!!!!! Pure happiness! For those that don’t know, this is Rick Guidotti!! He comes to our conferences every year and takes wonderful pictures of our kids and us! You can learn more at Positive Exposure … xoxoxo

July 28 2015:

I am so much enjoying our chats together, Kristina Bjorklund!!! So very happy we got to meet face to face and share hugs!! xoxo

Lillian, Natalie and Madison.

July 30 2015:

We had a surprise visitor at the farewell dance last night. Made my eyes sweat just feeling the excitement and energy that her visit brought. xoxo

“The Litmus Test” …. Brought to us by the wonderful siblings of the Chromosome 18 Registry. The Sibling Panel is one of my favorite sessions at the conference. It’s the ONE session I do NOT miss.

Pretty much all siblings agree about “The Litmus Test” as something they unofficially use with new friendships and with potential significant others.

Two siblings had brought along their significant others and what they had to say made my eyes sweat! What they shared is so beautiful …. What they had learned being at the conference, the joy of being around all of us, and thanked us for having them.

I feel “The Litmus Test” applies all across the board … potential friends of the sibs, potential friends of the parents, potential significant others for sibs and potential significant others for parents. “The Litmus Test” … Sounds like a GREAT book title to me!!

And, Ronda, what your amazing daughter shared had my eyes sweating a river. I, too, feel that part of the purpose is to help us learn that change happens within our own minds and our beautiful children facilitate this for us.

Oceans of love and gratitude to the siblings and their significant others … (Thank you Andy for facilitating the panel!)

Farewell …. Til next year!!!

More farewell smiles … Thomas just loves his little buddy, Isaac!!

Finally made it to check out the library! Whole building is glass = A hugely freaked out Lillian. The kids section was down one level. Gave her a choice to sit at the main level while Thomas and I went down or choose the stairs or glass elevator and go with us. She chose the elevator. Go Lillian!! After I got them settled with books I went to the top! That and coming back down made by head and stomach spin. HA! I’m kinda freaked out by the all glass building too. Part 1

One more swim and one more meal at Red Rock.

August 5 2015:

Spent some time yesterday making thank you messages. So fun!!

August 9 2015:

All of the photos can be seen here:

https://www.facebook.com/camilladowns/media_set?set=a.10153588481731584.1073741881.681171583&amp%3Btype=3

Neuropsychological Evaluation With a Determined Cheetah

January 15 2022

Yesterday, Lillian had the first of three appointments for the neuropsychological evaluation, assessing for autism with anything else that presents. They are each about an hour and a half in length.

It was rough. Some of the assessment is timed. Lillian cannot process being out of time, when she’s not finished with a task. She had to come sit in the car with me for a 15 minute break.

Dr. Highsmith was lovely. It’s obvious she is skilled and has much experience. I’m relieved to have the 1st appointment finished. Two to go.

Lillian very much did not want to do this. But, can see the benefit. So we decided to incorporate something she DID want to do. Afterwards, we stopped at Audrey Harris park to take in the view, and take some photos.

January 18 2022

This afternoon Lillian had the second of three appointments for the neuropsychological evaluation, assessing for autism with anything else that presents. They are each about an hour and a half in length.

This time wasn’t as rough as last Friday. However, Lillian really didn’t want to go, so we were 15 minutes late. And good news! They were able to finish it with this visit. So Lillian does not have to return on Friday. 🎉🎉🎉 Go Lillian! We can do hard things!!

One last appointment next Wednesday. But, that is just for me to go over the results of the assessment (and Lillian if she wants to attend, but it’s at 9:00am and Lillian isn’t interested in an appointment at that time).

We decided to incorporate something fun again. Afterwards, we took Rosey to the car wash.
When they were very young, I didn’t have the money to put towards entertainment. I barely had enough for food. So I would make going to the car wash an adventure. Still is.

January 26 2022

I received the results of Lillian’s neuropsychological evaluation this morning. It was as expected (plus some), however, overwhelming with much parent guilt over not having done this earlier in her life. Hot tears have been flowing on and off most of the day. This also brought relief in knowing the “why” of some issues.**

I feel like I’m the middle of the rope in tug of war between helping Thomas get enrolled for dual credits for his last two years of high school, along with figuring out college, and thinking about all that needs to be addressed with Lillian. Plus addressing some of my own medical issues. We’ve got the route(s) figured out for dual credits. It’s just taking all the steps, filling out the forms, and looking into colleges to be sure the credits transfer to the 4 year degree.

I have been letting myself feel sad and sorry for myself today, as I do this all alone. Some days I’m just so damn tired. I will walk into the overwhelm, the tiredness, and let myself feel it all. I don’t believe in smooshing these kinds of feelings down, piling positivity on top of it. That does no one any good. I believe in physically feeling the shit of life.

This evaluation assessed more than autism. I’ve not shared the results as that is up to Lillian as to whether or not we share. She does have some hard core disregulation happening. These diagnoses have opened up therapies that insurance would not pay for without the diagnosis, and informed me of specific therapies and tests I did not know about. Therapies that would have been incredibly helpful earlier in life. Yet, we will start where we are.

Then, tomorrow, or the next, or the next, I’ll move back to knowing that I’m a damn cheetah, because I can do hard things. (So glad I read Glennon Doyle’s book and learned that phrase! Highly recommend her book, Untamed.)

I’m not posting for sympathy. I’m sharing because that’s part of my processing. Getting it out of my head. And I know if I’m feeling this way, someone I know has, or is, feeling this way. 🌹🌹🌹 (Photo of a damn cheetah!)

Throwback Post: 2012 Chromosome 18 Conference – San Antonio

**THROWBACK POST**

A more in depth post can be found here …

Journey to Magical Moments – The 19th Annual Chromosome 18 Conference

 

 

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!!!
**********
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: