Better Together

As an early childhood special education teacher, I took a college course last year to increase my knowledge and improve my teaching skills and strategies. Throughout the course, I have been reading a book titled “An Introduction to Young Children With Special Needs: Birth through Age Eight” by Richard M. Gargiulo and Jennifer L. Kilgo (2019). While reading this book, I came across a section in chapter 3 about family-centered approaches to early childhood education. One part that particularly stood out to me is as follows,

“Families of young children with delays or disabilities in the 21st century remain an instrumental force in moving the field of early childhood special education forward. Many parents are involved in professional and parent organizations and provide support to other families. Families have a strong voice in advocating for legislation and service for their children and other children and families.” (p. 59)

After reading this, my mind instantly thought about the CSNK2A1 Foundation that focuses on finding a cure for Okur-Chung Neurodevelopmental Syndrome (OCNDS) and the effect families, medical professionals, and teams of individuals have on bringing awareness to this rare syndrome. Because OCNDS affects individuals and families in countries throughout the world, it is essential to work together. For six years, our family was not able to find a diagnosis for our son and his delays. Professionals that worked with him kept telling us to continue what we were doing (OT, PT, speech, and vision therapy) because we would still need to do all of that even if we had a diagnosis. In 2016,  Dr. Okur and Dr Chung used their knowledge and skills to discover OCNDS. Although we did not receive Cam’s diagnosis until 2019, we are grateful to them for using their knowledge, skills, and experience to discover OCNDS and also for their constant research of the syndrome. We are incredibly grateful to Jennifer Sills, founder of the CSNK2A1 Foundation, for consistently working tirelessly to bring knowledge and information to families in need, all while meeting her own child’s needs. She is a strong and incredible advocate and voice to bring about awareness in our own states, provinces, and countries, and using our voice to encourage legislatures to bring about policies that will benefit children with rare syndromes.

From attending the CSNK2A1 Foundation bi-monthly family calls and parent advisory board Zoom calls, I have met many incredible families who navigate life's physical and emotional challenges that come from raising a child with a rare syndrome(s). Each parent, guardian, and caretaker truly has a strong voice and advocates not only for their own child, but for children with delays and disabilities. Many of them use their time to raise awareness by having monuments light up on OCNDS Awareness Day. Despite our cultural differences, language barriers, family dynamics, and other differences and backgrounds, families, medical and education professionals, and scientists truly work better together when we use our collective “voice” to raise awareness and bring about changes, policies, and research that affects children and young adults with OCNDS. As we collaborate with each other and other organizations, many individuals with delays and/or disabilities will benefit and grow. While living within our own spheres of influence and communities, parents and families will continue to advocate for their child to receive the support and resources that will help their child(ren) grow and develop, and overcome obstacles and challenges that are in their life. In the 21st century, families and professionals truly are an instrumental force in helping each other become better, move forward together, and bring about changes and positive progress for those who are rare! Each individual is special in their unique way!