Celebrating our Employees: A Family's Path with Down Syndrome

At Mount Nittany Health, we are pleased to celebrate our employees and their families, and we are grateful to have a team with unique backgrounds and experiences. Adrienne Eichenlaub, Community Engagement and Philanthropy Strategist, Mount Nittany Health Foundation, has been generous enough to share a bit about her journey as the parent of a child with Down Syndrome.

Eichenlaub and her husband Duane married on October 10, 2009. They always wanted to have children, but faced some challenges with conception and pursued IVF treatments. They now have Grady, who will be six on November 8^th, and Vivian, who will be two on November 9^th.

Vivian was born with Down Syndrome, and although she is non-verbal and a bit delayed with speech, gross motor skills and fine motor skills, she is extremely spunky and strong-willed. “As her personality has developed over the last few months, we’ve come to learn that she’s extremely inquisitive, empathetic, and feisty,” said Eichenlaub. “Through limited sounds and body language, she will most definitely let you know when she disagrees with something. On the other hand, though she is unable to say ‘I love you,’ she is VERY snuggly and affectionate.”

Raising Vivian has brought immense joy to the Eichenlaub’s lives. She has a wonderful connection with Grady, and the two get along very well together. Eichenlaub explains how fortunate her family is that Vivian only has a few medical issues associated with Down Syndrome. “Overall, she is in great health,” said Eichenlaub. “However, Vivian needs a bit of assistance to help her meet her developmental milestones. Vivian has participated in physical therapy since she was two-months-old, special instruction (social/emotional development), occupational therapy, and speech therapy since she was one. She sees each of her therapists one to two times each week, and we as a family participate in one session a week with one therapist at her school. This connects her support system at school with her family.”

Setting goals and milestones for Vivian is an important part of her developmental journey, but she is never compared to her peers, and her family focuses on the importance of allowing her to do things on her own timeframe. Eichenlaub said, “Her dad, therapists, and I have set a goal to have her take independent steps before she turns two. We have to get her a bit steadier on her feet, but just two weeks ago, she managed 40 plus steps on her own. It was a huge win for us!”

In addition to different therapies, Vivian has frequent check-ups with a cardiologist because she has an atrial septal defect (ASD), which is a hole in the heart between the upper chambers (atria). She also sees an ophthalmologist, ENT (ear, nose and throat) physician, and an audiologist. Vivian is a patient at the Down Syndrome Center at UPMC Children’s Hospital of Pittsburgh, which helps her family manage her care through the lens of Down Syndrome.

Throughout Vivian’s journey, the Eichenlaub’s family, friends, and therapists have been incredibly supportive. Each of Vivian’s milestones is a team effort and celebrated by everyone. “We’ve found a great community in the State College area through the Centre Region Down Syndrome Society, where we’ve connected with families who have kids who are the same age as ours,” said Eichenlaub. “We’ve also connected with families from around the country through the National Down Syndrome Society where we’ve been able to learn about life stages for individuals with Down Syndrome, legislation to support her in those stages, and legislation that needs to be changed.”

“As a society, we have made monumental changes for individuals with Down Syndrome, many of which are as recent as 50 years,” said Eichenlaub. “But we still have further to go. There is work to be done to make basic access to services available to all individuals across the nation.”

For parents starting a similar journey, Eichenlaub’s message is one of reassurance. “At first, a Down Syndrome diagnosis can be very scary and overwhelming,” said Eichenlaub. “You are entitled to grieve for the life that you had imagined that has now changed a bit. And, you are not alone. You have an incredible community waiting to embrace you, starting with amazing organizations right here in the State College area. But, also know that your life is about to get so much better than you could ever have imagined!”

Vivian has taught her family important lessons including patience and a deeper level of acceptance. She has also taught her parents, who like to have control over everything, to slow down, reevaluate their journey in life, and embrace their kids as individuals.

Eichenlaub’s message is one of compassion and empathy. “Have the hard conversations with your kids about inclusion and acceptance,” said Eichenlaub. “Additionally, please reach out. My husband and I are more than happy to be a resource if you have questions about anything.”

Please join us in thanking Eichenlaub for sharing her family’s wonderful story with us, and for epitomizing Mount Nittany Health’s core values of caring and respect. We are so grateful to have you as part of our organization, and for contributing to our mission of “Healthier people, stronger community.”