XVI, Advocacy and Navigation
By Allie Imaghodor, Executive Director, The Adventures of XVI and Childcare Resources' Junior Board Member
My late grandfather always taught me to do my best to meet a need if I ever encountered one. At an incredibly young age, I learned that it’s not just about a gift of a physical or material item. Quite often, people need time and positive energy invested in them in order to be their best self. This life lesson is why I became involved with Childcare Resources. Their mission involves more than just investing financially in families – they invest hours of training and support to help build families. They focus on what we all know: We are stronger as a community when we invest in our children and their education.
If you don’t know me as Allie, you know me as Xander’s mom. In the summer of 2015, I became a mother to Xander Vance Imaghodor. Xander was born at just 23 weeks’ gestation. I thought the 133 days he was in the NICU were the worst of days. What I found to be the most intimidating were the days after the NICU was long behind us. We were blessed to have a healthy son, but we noticed early on that Xander had significant delays in all areas of development. We adjusted for milestones based on his early arrival, but he was always just a bit behind. The journey to obtain appropriate services was daunting. I struggled to navigate where to go, what services were best, and how to manage all of it. Then came the strong sense of advocacy to speak up when I knew it was crucial to Xander’s success.
Back then, it was almost unheard of for a baby to survive at 23 weeks, and really unheard of for that baby to require no major medical interventions. I felt stuck. The healthy baby I prayed for was here, but we had no idea how to handle a baby with developmental delays. It took hours of research, several evaluations, and emotional meetings to develop a team of people who could focus on Xander and his specific needs.
Amid the 5.5 years of navigating Xander’s journey, I found it most important to share his story with our community. Through that, I learned that I was not alone. There were other families just as lost and overwhelmed as we were. Many felt afraid and ashamed to share their story publicly because of internalized guilt. So, I helped guide people in the shadows. I gave them the support they didn’t feel they could access. We’ve been blessed with an outpouring of love and support since the day Xander was born.
It is the sad reality that most families of children with special or developing needs do not have that same level of support. In 2020, I decided to officially change that. I got the courage to launch our own foundation, XVI. XVI was a nickname we settled on before Xander was born, because like a typical Southern mama, I love a monogram!
Life with a special needs or a medically fragile child is so much more than just a case filed away in a chart. It is an adventure through life and all the twists and turns that come with it.
We want to be friends and family with yours. We want to help be a shoulder and fellow advocate when times are hard and an encourager to celebrate the wins, no matter big or small. Financially, we aim to provide support in the form of transportation and copay assistance for children undergoing specialized therapies. We also hope to equip and empower parents with the tools to navigate the journey from the beginning of an evaluation to advocacy support in a school (IEP, 504) setting. We’re also here to just listen. If you have a gut feeling that something isn’t right or that your child isn’t getting the necessary support, we are here.
There is no shame in advocating for your child. My sincere hope is to help you and your family live a better and more full life, knowing that you are not alone in the struggle.
To learn more about The Adventures of XVI, please visit www.theadventuresofxvi.org.