Tag Archives: 18p-

Throwback Post: The 2011 Chromosome 18 Conference

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July 20 2011:

Indy bound!!! Chromosome 18 Conference and family here we come!!!!

I’m so darn lucky! I got to have a very mini massage this morning at the airport! Team Member L got the “beep” so we got VIP treatment and I got to be touched all over!! WooooHooooo!!

TGI Fridays for some lunch before heading to Indy!!

We’ve arrived!!!! Time for the reception!!!! Yeeehaaawwww!!

View from our room!!

All kinds of adventures today for Team Member L! Getting up early, flying from Reno to Dallas to Indy, making it to our room on the 18th Floor!!!! Fun C18 Reception . . . For Mama – chatting and hugging old friends and meeting new ones face to face after chatting on Facebook. For Lillian – meeting all new friends who feel like they know her cause of all Mama’s posting on FB! Now it’s off to dream land adventures for both us. FULL day tomorrow!

July 21 2011:

Dinner before Moms night out!!!!! YeeeeeHaaaaaawwwwww!!!

Lillian’s friend Katie!!!

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Moms Night Out!!!! We Rock Y’all!! Just imagine how loud it is in here!!

July 24 2011:

Dinner adventures with Lillian!!

July 25 2011:

Headed to Dallas!! Done with our Indy adventures y’all!!!!

Food plus Mojito with my favorite girl!! Fries!!

Goodbye Dallas!! Thanks for the French fry and Mojito adventures!!! Here we come Reno!! Get ready!!

Lillian and I were treated to a breathtaking Reno sunset as we flew in!!!! Wow!!!

July 30 2011:

August 3 2011:


August 7 2011:

Our Chromosome 18 Conference Adventures!! Lillian and I had a ball y’all!

https://www.facebook.com/camilladowns/media_set?set=a.10150334554696584.401262.681171583&type=3

Throwback Post: The 2015 Chromosome 18 Conference

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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

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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: 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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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!!!
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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

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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 …

Latest News: New Role as 18p- Volunteer Coordinator

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

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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