By Miriam Bernard
The NODCC has a wonderful new board member we’d like to introduce to our community: 29-year-old ACC adult, music enthusiast, and visionary Ilana Davlin. Ilana has been involved with the NODCC since 2018, but her story with her DCC goes back much farther than that. Ilana was diagnosed with ACC before she was even born, but with so little research surrounding the world of DCCs in the early 1990s, Ilana and her parents spent much of her childhood and adolescence frustrated because she was misdiagnosed with several conditions that didn’t give answers why certain types of processing were so difficult for her. At the age of 24, she found herself fed up with the lack of understanding of herself, and chose to research the ACC aspect of her diagnosis. Everything changed that day as she began to recognize herself and her behaviors in the research she read. This led her to connect with the NODCC and that’s when the course of her life truly changed. She was able to see herself and who she is in the attendees, and felt a sense of self-understanding she’d lacked up to that point in her life. She is now able to say to her friends, “This is why I am the way I am. Show me a little grace; I’m fine.”
One of Ilana’s favorite aspects of the NODCC conferences is the Adults with ACC panel, because it gives her a platform to share her story in anticipation that it will give hope to parents of DCC children who may be listening. Ilana’s parents were told by their doctor that she would likely be very short and have cognitive difficulties. As it turns out, she is one of the tallest females in her family and has been able to manage and even thrive through many of her difficulties, so Ilana feels it’s important for parents to know their child is going to develop and grow in ways they may not expect, and to hold onto that hope.
Going to the conference, Ilana was able to connect with people like her, and at the most recent conference, a group of adults with DCCs sat in a circle and almost created their own group therapy together. She states that was a chance for her to connect with others in a way she never has before. This was the experience that ultimately led to her interest in joining the board. During that session, one of the NODCC researchers approached Ilana and her group, and that conversation led to the opportunity to join the board and represent the interests of ACC adults amongst the NODCC leadership.
As a brand new member of the NODCC board, Ilana has some noble goals. First, she wants to advocate for ACC adults who don’t know how to advocate for themselves or who might have a hard time connecting. She states, “I want to make sure everyone feels welcome and believes they have a voice… I want people to receive the knowledge and resources I have, so they can grow the way I did.”
In the future, Ilana also wants to start an advocacy or mentorship program similar to the Big Brother/Big Sister program to help young adults navigate the difficulties of middle school and high school with the assistance of an ACC adult who acts as a mentor. She recalls how she was an awkward child in middle school and didn’t have a lot of friends in high school. With the knowledge she now possesses, she realizes she was trying to process everything that was going so fast around her and trying to catch up. Now she’s able to see ways she could have done things differently. Ilana now proudly states, “I want to be able to get the word out and advocate for people so if they’re in the situation I am, they can grow from it, learn, and change their lives like I did.”
Ilana interacts daily with her NODCC friends. Another goal she has is to bring about an ACC adults retreat in years between NODCC conferences. She feels ACC adults who may shy away from the unknowns of vacations could find a safe space in a trip with other ACC adults, and enjoy seeing one another in the interim between conferences. These are the types of exciting developments Ilana will be advocating for in her position as a board member, and we are so proud to see her vision for the future so impressively representing ACC adults. At the 2024 conference, feel free to find Ilana and have a conversation to get to know her for yourself. You’ll be glad you did!
Ilana is a huge fan of sports and music, and most weekends finds herself at various sporting events, concerts, or DJ events. She is a Dave Matthews mega fan and has seen him in three states already this year. She is preparing to travel to Seattle to see him a fourth time this year in just a few weeks. She keeps herself busy with regular events, both with friends and alone, and she is thrilled to be an addition to the NODCC leadership team. Welcome aboard, Ilana!