By Miriam Bernard

When we spoke this month with Lindsey Barge about her brother, Nathan, in our yearly sibling feature, Lindsey was honest enough to share that the road to sibling friendship and mutual respect hasn’t always been easy. Sometimes it takes years to develop trust and leave childhood difficulties behind, but when it occurs, it is so worth it.  Nate was diagnosed with complete ACC from a very young age, so when Lindsey was born three years later, their household was one with all the complexities and adventures of learning about a child with a neurodivergence such as ACC. Lindsey recalls that due to her brother’s needs, she often functioned as the independent child, who could complete homework without assistance, or look after herself if her parents needed to assist her brother. As many siblings of DCC families may attest, this required Lindsey to develop a maturity and independence uncommon in young children.

There was also the issue of shared attention. Like all young kids, Lindsey coveted her parents’ attention.  For parents of a special needs child, doing so in a way that was equal could be difficult to parce it out, when one child required more energy and focus than the other. Lindsey took up the art of dance as an outlet of performance and perhaps an avenue to receive accolades for her own skill and artistry. Sometimes outside hobbies such as this serve as healthy channels to help siblings of DCC individuals feel their own identity separate from their sibling. Lindsey recalls a long discussion in her childhood she once had with her parents, where she was honest about her needs as a younger sibling. In fact, if she could give any advice to families navigating DCC, in addition to navigating parenting neurotypical children, she states, “Try to continue to be open about your feelings to your parents. That’s something I tried never to hide”.

Lindsey is now a nurse living in Oklahoma City, and her brother lives in Madison, Wisconsin where they grew up. The sense of competition that existed when they were children and adolescents has faded to the background and now they share a friendship unlike ever before. Lindsey shared, “Our relationship has gotten so much better over the last couple years. He trusts my judgment as a professional, and confides in me- we have a better relationship now. He’ll even ask me for advice with health related questions, since I am a registered nurse.”  Lindsey also spent time proudly sharing about her brother’s academic achievements. Despite doctors telling their parents Nate would likely never talk, he is now a college graduate of Edgewood College in Madison, Wisconsin, where Lindsey also attended. Nate was part of a special program called The Cutting Edge, which caters to special needs individuals and places them on a certificate-seeking path, or a degree-seeking path. Nate chose and completed the degree-seeking path, earning his Bachelor’s Degree in Communications with an emphasis in digital marketing, and now he could be the first person in The Cutting Edge program to achieve his masters degree. Lindsey is immensely proud of her brother’s accomplishments. “When he graduated, he walked straight to me and gave me a hug. He may deny it, but he shed tears. It was a very emotional moment for us all. This was a life milestone in which he surpassed any expectation ever set of him”.

When asked what wonderful things Nate has brought to her life, Lindsey shared, “My patience and love definitely stemmed at an early age from needing to be patient with my brother.” These are virtues that have not only taken her far in life, but also in her career as a nurse. She also met her best friend as a result of the NODCC conferences. They both have siblings with DCCs and met in the siblings group. The very reason Lindsey is now a resident of Oklahoma City was to be near to her best friend. She encourages every family member of an individual with DCC to attend and dive into the NODCC conference, because there is so much there for the families. You never know, you might meet your future best friend there just like Lindsey.

The NODCC would like to thank Lindsey for her willingness to share about her brother, and also her honesty in opening up about the real-life challenges they’ve overcome. We hope their relationship served as an encouragement to others in a similar boat, who may be looking for hope regarding how things could be down the road. To learn more about the NODCC’s upcoming conference, click HERE.