Spencer’s Story

The theme of transformation is a recurring one in 8-year-old Spencer Kennedy’s life. When Spencer was born, he was diagnosed with Down syndrome, as well as a congenital heart defect commonly associated with the syndrome. “I remember being in the delivery room, and it was pretty clear early on that something was awry, something was amiss,” recalls Spencer’s father, Caleb, a geneticist. “I remember a desperation, not understanding this abrupt change in pretty much every expectation. It changed my professional life. It changed our personal life. It changed how we thought or expected to parent.”  

At four months old, Spencer underwent open-heart surgery at Boston Children’s Hospital in Massachusetts, where they were living at the time. The successful surgery marked the first of Spencer’s remarkable transformations, as now his tiny heart could effectively work the way it was meant to. And despite the overwhelming chaos of information, fear, and worry that accompanied Spencer’s early days, through it all, he was also their constant source of immense joy. “When we were surrounded in a flurry of frightening information that came our way in a short order of time, the antidote was always Spencer,” says his mother, Heather. “The antidote was always this beautiful little creature who had entered our lives and surprised us in every possible way.” 

Spencer was also the catalyst for more transformative changes for the Kennedy family, prompting a change in job for Caleb and a move back to his home state of Minnesota to be closer to extended family. When it was time for the Kennedys to find an early childhood education program for then sixteen-month-old Spencer and older brother Quinn, there was no question in their minds that St. David’s Center was the right fit – for both boys. Heather and Caleb felt strongly that both boys should be in an early learning environment that included children of all abilities and offered the highly coordinated care Spencer needed.  

When Spencer began preschool and speech and occupational therapies at St. David’s Center, Heather and Caleb immediately felt the impact of a self-described “army” of teachers and therapists surrounding their son, facilitating his growth and development in collaboration with one another, under one roof. “I think we could have found a preschool where he would be loved and supported. But I don’t think we were going to find a preschool where he’d be loved and supported and valued – where his teachers were in active coordination with his speech therapist and in active coordination with OT. One thing that’s been such a gift to us is the very, very special and unique approach here where all of that happens in one place.” 

And as Spencer grew and developed, a constant in his life was this network of teachers and therapists who walked alongside him. It was this same support system that noticed the regression in his speech and social engagement, and nuanced changes in his behavior around the age of five, ultimately resulting in his diagnosis of autism. Despite a resurgence of the old fears and worries about Spencer’s outlook, his parents knew that St. David’s Center was ready to meet Spencer where he was and focus on the strengths of the child behind the diagnosis. “One of the things that’s always been so special about this place,” Heather reflects, “is this ability to bring all of this expertise about the diagnosis but also to honor the child who’s experiencing it and to really foster that child’s potential, whatever that potential may be.” 

Spencer and his family embarked upon a new phase of their journey with St. David’s Center, enrolling in Family Floortime therapy—a multidisciplinary intervention aimed at creating new patterns and building new skills in communication and interaction. When COVID hit and in-person therapies shifted to telehealth, Spencer and his family began to participate in Floortime virtually. Heather shares, “Spencer got to have the eyes of all these wonderful practitioners in his environment where he lives, and it gave us an opportunity to really learn to speak Spencer’s play language and to adjust as a family so that we can engage him. That was a real gift…it was also really hard work. But the things that have changed in our family because of it are tangible.”  

Spencer’s occupational therapist, Kate, essentially served as a coach – for both Spencer and his family – to determine the best strategies to support Spencer’s needs at home. Explains Kate, “The Floortime Approach has been so effective with Spencer because it’s helped his family understand the pace at which he learns and interacts and has helped them learn how to really stretch that and help him grow, giving him the space and time to come up with his own ideas, which has been amazing to watch in so many ways.” 

It’s an approach that has engendered yet another transformation. “Over time, his level of engagement increased,” describes Heather. “The range of his play, the confidence of his social interaction, and just the fact that he comes looking for us [to play], which is totally new.” She adds, “For me, the progress that has come as a result of these therapies and his beautiful preschool experience is that we’re always moving toward more and more intimacy with him. It’s about connection. It’s about finding out what’s in there and watching with a tremendous amount of joy as he begins to express the depth that is in there and to show it to the rest of us.” 

Today, Spencer and his family are thriving. Now in second grade, he is an avid music lover who enjoys family game nights and dancing, while he continues to build and practice skills in St. David’s Center’s School Age Autism Day Treatment program. While Caleb and Heather don’t know for certain what Spencer’s life would have been like without St. David’s Center, they do know the powerful effect it has had upon all of them. “To me, it seems as transformative as his heart surgery,” asserts Caleb. “It definitely takes more commitment and more work over time, but there’s no doubt in my mind that it has truly been transformative in his life and our lives.”  

And clearly, there are more transformations to come in Spencer’s life – both for Spencer himself and all those whom he touches. “We’re watching him learn to be a person who knows how to be in the world, and who wants to be in the world, and who feels safe in the world,” affirms Heather. “For Spencer, it really comes down to awareness and confidence so that he can grow into the fullest version of himself. I just want him to be the best person that he can be.” With his “army” behind him, he undoubtedly will.