Jeff and Rosie: Family Services

For Families…It’s No Day at the Beach

Jeff Keilson, senior vice president for Advocates, reflects on an afternoon he spent "in the shoes" of a family caregiver. The opinions expressed reflect Jeff's personal perspective and are not meant to represent Advocates' position.

As a human services professional, I’ve worked with individuals with disabilities and their families for over 40 years.  I pride myself on being an advocate and have learned a tremendous amount about what families face and what they need from working directly with them. But it wasn’t until a recent afternoon spent with my girlfriend’s daughter Rosie, who has autism, an intellectual disability, and seizure disorder that I began to truly understand the magnitude of the challenges families face every day of their lives. In that moment, I experienced firsthand the stress of being a caregiver.

Rosie and I went to the Connecticut shore while her mom spent the day helping her own mother. I soon realized that my day of relaxing, reading, and watching the ocean waves was not going to happen. No lifeguards were on duty, so all of my attention had to be on Rosie.  She loves the ocean and being in the water, but she doesn’t have any awareness of the potential dangers. I sat in my beach chair far from the water, thinking I would be able to keep an eye on her. 

As Rosie moved farther from shore, I positioned my chair closer to the water’s edge so I could see her. If something happened I wasn’t sure I could reach her in time.  I called out for her to come closer. Rosie finally heard me, came back to the beach, and sat beside me with her toes in the water. I felt guilty and frustrated for causing her to get out. I just couldn’t find a way to explain that she could stay in as long as she remained close to the shore. We ended up leaving the beach and getting her favorite Italian ices instead. I was emotionally exhausted after just one afternoon as Rosie’s caregiver.  It is hard to imagine what it would be like caring for someone every minute of every day.

As professionals we work to support individuals with disabilities and their families, but we often forget or fail to understand the daily stressors and the cumulative impact on their health and well-being. The reality is that legislation, budgets, and politics too often limit our ability to support families. We should challenge ourselves to review and change all the policies and practices we control that don’t support families in ways they want and need. Families deserve options that will best support their loved ones. When families reach out to us for help, we need to respond to their individual needs, without the needless barriers.

Parents of children with disabilities face many challenges. Accessing resources and services should not be one of them. I often think about how angry I become when trying to get help from the customer service department of my cell phone provider — and that’s just about my phone bill. How must it feel when the help you need is for your son or daughter? We are in a wonderful position to help families and should always remember, it’s not about us. It never has been and it never should be.

You may contact Jeff Keilson at [email protected].