Hello! My name is Courtney Hall, serving as the GBYS Program Coordinator and Parent Guide within the vibrant community of Portland. My journey as a parent is deeply intertwined with advocating for my son, who is dually challenged by deafness and Autism Spectrum Disorder. His resilience has been evident since infancy, marked by his use of hearing aids from the young age of 6 months.  His primary mode of communication is American Sign Language (ASL), which we continue to learn and expand on every day. Parenting a child with such intricate needs necessitates a blend of patience, understanding, and unwavering advocacy, qualities I strive to embody every day. Fortunately, Portland offers resources and a supportive community which have played a pivotal role in our family’s journey. As my son continues to grow, each milestone is a testament to his strength and the support we’ve received along the way. I’m eager to share our experiences and learnings, while helping others navigate their own paths.

Email me: Courtney@handsandvoicesOR.org

Hello! My name is Lydia Merrill, and I live in Marion County with my husband and our two children. I serve as the Parent Guide for families in Yamhill, Marion, and Polk counties.

Our younger child was born with a very rare genetic multisensory disorder called CHARGE Syndrome, which is the leading genetic cause of congenital deafblindness. She was diagnosed with profound bilateral sensorineural hearing loss and very limited vision. CHARGE Syndrome is a medically and developmentally complex condition that can involve life-threatening birth defects.

Our daughter spent the first two and a half months of her life in the NICU, where she underwent multiple surgeries and procedures. Since then, she has continued to face additional medical challenges requiring further care. Her hearing loss, vision loss, feeding difficulties, and balance issues have impacted her development and communication.

From infancy, we have used a total communication approach with her. This includes touch cues, object cues, basic ASL signs within her visual field, and gradually introducing other deafblind communication methods such as Haptics, Protactile, and hand-under-hand tactile signing.

With the right support and strong partnerships between medical, therapeutic, and educational providers, our daughter has made meaningful progress in her growth, development, and learning. Despite the many challenges she faces each day, she continues to show us how strong, resilient, and determined she is.

Navigating complex medical and educational systems has been one of the greatest challenges of this journey, but it has also taught me so much. I continue to learn as my daughter grows and develops. Advocating for her needs and well-being has given me a sense of purpose I never expected.

I value staying connected with other families who are walking similar paths. Our journey has taught me so much, and I hope to support other families in whatever way they need as they navigate their own journeys.

Email me: lydia@handsandvoicesOR.org