My name is Eva Queen, founder and Executive Director of Community Advocates 4 You, Inc. I am also a devoted wife, and mother of 3 beautiful daughters, and proud grandmother of 2.
In 2005, the youngest of my 3 daughters was born with a catastrophic birth defect; Congenital Hydrocephalus, a rare neurological condition which caused significant brain damage.
After receiving our daughter’s diagnosis, coping was painful, but life was not void of hope and joy. We experienced feelings of grief, denial, ultimate acceptance, and thankfully we were resilient.
While our ultimate anchor is our faith in God; our faith did not shield us from the need to take practical steps and make critical decisions related to treatment and care for our child. My husband and I were suddenly immersed into a community for which we had no preparation. With God's help, we allowed others into our story and this unique community of other families, and professionals became our life-line.
Over the years our daughter has endured multiple brain surgeries and countless other medical, behavioral and educational interventions. To say to you that the road has been difficult would be an understatement; our lives were literally turned upside down. I left a cherished career as a free-lance sign language interpreter, and due to mounting medical bills and low income, our family suffered devastating financial loss. The emotional turmoil at times seemed unsurmountable. But at every turn, our faith and community kept us grounded and moving forward.
As our child’s secondary diagnoses began to emerge around age 2 (which included a language disorder, developmental disability, and epilepsy), we quickly realized that accessing resources was not going to be easy; and paid advocacy was expensive. With these challenges in view, we made the difficult but necessary decision for me to re-enter the workforce.
I applied for an administrative position with Kennedy Krieger Institute, a local research and treatment hospital for children with special healthcare needs. Fortunately, I was offered a position and this changed the trajectory of our daughter’s development, and our family’s ability to self-advocate.
Unfortunately, not every family is as fortunate as we were; this is especially true for minority and low-income families. And this is the primary reason for establishing CA4Y.
Our connections to places like Kennedy Krieger, Johns Hopkins Children’s Center, and the Parents Place of Maryland gave us access to amazing care and advocacy. These relationships also afforded opportunities for networking, training, and the acquisition of self-advocacy skills that has empowered and equipped us for life as parents of a child with disabilities.
I have used my knowledge and skills to assist other families for over 10 years, teaching others about special education law, policies and procedures, and linking them to the resources that helped us.
I guess you could say that Community Advocates 4 You, Inc. is my way to pay my blessings forward.
Raising a child with disabilities is challenging, and at times, can be overwhelming, but we do not have to do it alone.