Meet Joe Scott, the Down Syndrome Diagnosis Network’s newest board member. Joe is an Instructional Designer at a major university. Joe first got involved in DSDN as a member of the Rockin’ Dad group. He then became an instrumental member of DSDN’s Parent Advisory Council. With a background in education and technology and a passion for advocacy, we are excited to welcome Joe to our team.
Tell us about your family:
My wife, Tanya, and I are parents to three girls, Elliana 6, Hannah 2, and Olivia around 6 months. We also have two beagles, Queenie and Sugar. We’ve been married for 11 years and live in central Pennsylvania.
How did you get involved with DSDN?
I volunteered for the DSDN Parent Advisory Council due to my passion for all three parts of their mission. My wife and I were extremely fortunate to have an amazing support system around us, in large part due to our invaluable connections to other DSDN families. This has led me to opportunities that promote factual understanding of the needs associated with Down syndrome. Each opportunity to discuss and inform, whether it be with friends, family, politicians, or medical professionals, is one step closer to creating the world I want for my daughter.
What is your hope for families with a new Down syndrome diagnosis?
My hope for new families entering the Down syndrome community is that they are able to shut out the noise that comes from those who either do not know how to speak to them about Down syndrome or have incorrect information to share. I hope that they can be connected with knowledgeable and supportive individuals and communities that will help them to, first and foremost, enjoy having their child, and then embrace the milestones with enthusiasm and obstacles with optimism.
How do you hope to impact the diagnosis experience?
My hope for the medical professionals who deliver a new diagnosis is that they are proactive in becoming informed about Down syndrome. While my wife and I were extremely fortunate to have an amazing doctor (Dr. Terry Ruhl), one that we had never met before the birth of our child, deliver the news in an empathetic and reassuring way, others have not been so lucky. I hope the medical community listens to the families of these children and seeks to improve their knowledge and methods of delivering the diagnosis. I hope that all families can be told the kind of uplifting message from their doctor that my wife and I were told: "You'll have your entire lives to fight for her and worry. Today, she's just a baby. Enjoy her."
What has been the most valuable resource to your family during the first few years of Hannah’s life?
The DSDN is by far my family’s most valuable resource. The available support groups have celebrated our successes and listened to our worries, responded openly to our questions, emphasized without judgment, and created an environment in which my wife and I have found close friends without the expectation of ever meeting certain people in-person. Beyond DSDN, our early intervention services have been instrumental in meeting the developmental goals and milestones for Hannah. Each specialist educates my family and supports my daughter in a ways that I look forward to continuing for years to come.
About DSDN: We are parents from all over the United States and around the world who each have a child with Trisomy 21 (Down syndrome) and a great desire to ensure families who receive a Down syndrome diagnosis are receive current information and support. We come from varying political and religious beliefs with a shared vision that all families would have unbiased, famliy-centered diagnosis experiences with up-to-date information and access to support and connections.