I have news to share! I’ve taken on a volunteer position with Chromosome 18 Registry & Research Society. Here’s the biography I put together for the C18 website (which can be found here – https://www.chromosome18.org/chromosome18-team/camilla-downs/).
I’m looking forward to my role as 18p- coordinator. My name is Camilla Downs (pronounced like Pamela, but with a “C”), and I’m 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 to begin work on her phobias. All of these issues are still with her.
I divorced in 2007, moving to Reno, Nevada from Tacoma, Washington. (Hey single parents out there. I see YOU!!) We’ve attended the yearly Chromosome 18 Conference since 2009, when it was in Las Vegas. It was so close, within driving distance, I just had to go check it out (Vegas is an 8 hour drive south of Reno). I was hooked, and we haven’t missed a conference since then.
The Registry has been deeply meaningful to us, by way of education, resources, research, and friendships with others who help us to know we are not alone. Thomas participates in the sibling track, and sibling events in between conferences. He also attends our local Sibshops events, and is in training to become a Sibshop Leader. Lillian’s closest and dearest friends are her 18p- friends, met at conference. They stay connected throughout the year via social media, texting and video chats.
In honesty, Thomas and Lillian have a strained relationship. Thomas discusses this with his therapist, among other topics, and Lillian has been discussing it with her therapist. I am hopeful that with time and understanding they can move through this current phase.
I was a paralegal for ten years before Lillian was born, ending my career as a paralegal in the Civil Division of the Pierce County Prosecutor’s Office in Tacoma, Washington in 2001. After that, my husband and I co-owned a construction company.
After divorcing in 2007, and moving to Reno, I taught myself everything to know about blogs, blogging, and social media. I became a Social Media consultant to local businesses, teaching a couple of times at UNR’s Extended Studies. After tiring of doing this, I became certified as a Coach to assist special needs families, and published my first book, D iz for Different – One Woman’s Journey to Acceptance. In addition, I became certified as a Reiki Master.
I then moved on to substitute teaching at my kids Montessori school for 3 years. When they both moved to homeschooling, I shifted to becoming my community’s go to pet sitter, and dog walker. We moved from that community in late 2019, and in February 2020 I officially became a Shared Living Provider/Host Home Provider for Lillian (meaning that I get paid). I also manage and facilitate a venue that interviews authors around the globe, MeetingtheAuthors.com.
Lillian’s book, Where Would You Fly and Other Magical Stories, was published in 2018. Thomas’s book, Biggest Little Photographer, was published in 2016. And, my latest book, Words of Alchemy, was published in 2019. Lillian also has an etsy shop with her artwork for sale – https://www.etsy.com/shop/LilliansImaginarium.
Lillian graduated in June 2018. Thomas is in between what is traditionally the 10th and 11th grade. These days I spend a great deal of time advocating for the two of them, putting great amounts of time into researching and educating myself. Thomas has just recently been diagnosed with depression, anxiety, and autism. Lillian is due to be tested for autism in January 2022, which I am pursuing so that she can have access to certain therapies.
Please reach out to me any time. I’m ready to do what I can.
See It. Share It. BE IT … Spread Love Everywhere You Go!
“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.