As a professional working with individuals with developmental disabilities, I had no idea that the person-centered philosophy I use to develop service plans for my job would later become the foundation for how I would support my son. Justin is just 36 years old and has been diagnosed with FTD; he has now lived at home with his father and me for a year. He recently began receiving hospice services.

When developing service plans at work, I always ask this simple question: “What makes this person’s heart sing?” Irrespective of the individual’s abilities, there is always something that their loved ones can identify that brings them joy and makes their heart soar.

Justin has moved through many phases of ability since his journey with FTD began, and each phase has involved different experiences or activities that bring joy to his heart. When he was residing at a psychiatric hospital, photos of his daughters, his favorite Chevy 4-wheel-drive truck, and our family dog were a constant source of comfort to him. Long walks and laughter have also been a refuge and outlet for him throughout his FTD journey.

A few months ago, Justin began physical therapy. His therapist advised me to engage Justin using each of the five senses: smell, taste, touch, sound, and sight. That advice became a springboard for identifying activities that bolster Justin’s heart at this phase of his journey.

Justin is very tactile. We’ve learned that he enjoys rubbing soft materials, opening and closing zippers, fastening Velcro, and twisting cords or strings. He also loves funny movies and videos, especially those that include goofy physical humor, such as when a character bends over and rips their pants or sticks their head in a toilet. I also burn candles and use scented waxes (especially lavender, with its calming properties) throughout our home to soothe Justin. And of course, we walk. We walk inside the house, and we walk outside as well, absorbing the beauty of the nature that surrounds us.

We’ve made the conscious choice to fill our days with love, laughter, and positive experiences, to counterbalance the challenges we face. Identifying the activities that make Justin’s heart sing and incorporating them into his daily routine allows him to continue to experience laughter and joy, in spite of this devastating disease. And as his parents, that causes our hearts to sing.