In my former life I was a director at a large non-profit organization that served individuals with intellectual and physical disabilities. I arrived one Wednesday morning to find a voice mail from one of my program supervisors informing me that “Mrs. Harris was going to call me as she was upset over an incident with her sone Daniel.” I called the supervisor in question and asked him what had transpired. He informed me that they had attempted to drop off Daniel a half hour before the program day started and that they were upset when he told them we don’t open until nine. I stated that this was unusual for his parents and asked what reason they had given. Ther supervisor informed me that he wasn’t sure but that he remembers her saying something about her mother being ill.
After contacting Mrs. Harris I was told that her mother had been hospitalized for what appeared to be difficulty with breathing and potential pneumonia and that she could not find anyone to watch Daniel as her husband was already at work.
Both Mrs. Harris and her husband were physicians. Their son Daniel had no diagnosed disability until he had a massive stroke while playing a soccer match at the age of fifteen. Both parents were at the game and unable to do anything to assist him. Once the paramedics arrived and transported him to the hospital it was finally established that he had experienced a traumatic brain injury and that he was now non-ambulatory and had lost the ability to verbally communicate. Daniel was in one of our “special needs,” programs as he received physical therapy and nursing services and was now a 23-year-old young man that was completely dependent on care givers to meet his daily needs.
His parents were always kind, helpful and appreciative of all that we did for her son but on this day, we failed them. A simple act of flexibility and understanding was all that was needed; however, this supervisor had decided that as he and only one other member of staff was there at that time that they did not feel like they should provide care until the RN was available.
I had spoken to Daniel’s father and mother at length about their son. As both of his parents were physicians it was evident that they saw Daniel’s future as bright and full of possibility. He was exceptionally bright and athletic, and they had great hopes for the things he would achieve. They now had a 23-year-old man that they loved and that they would need to care for for the rest of his life. Everything changed in a day.
I distinctly remember the conversation I had with the program supervisor that day and that I have had with many staff over the years. We are able to go home and relax. We get to plan activities for ourselves and make independent choices driven only by our own desires and we look to a future somewhat untethered by the need to care for our children as they will soon be flying solo and living the lives that we had envisioned for them.
Parents of children with significant disabilities don’t always have that same luxury. They may need to provide care and support for the rest of that child and their own lives.
Parents of children with disabilities face an intricate array of challenges, including physical challenges like fatigue, musculoskeletal pain, and sleep issues. Additionally, they experience significant emotional strain, with symptoms of depression, anxiety, and hopelessness. Social isolation and stigma further compound these challenges.
Since that day, I have become increasingly aware of the importance of customer service. The importance of patience and tolerance and understanding the challenges faced by so many of the care givers and family members of the ones that we serve. I have learned the importance of asking questions and adapting schedules and time frames to accommodate those moments of need. I have developed a sense of awareness that sacrificing moments of my time for people who dedicate their lives to caring for those they love is not a hardship but a moment of grace where I can help alleviate some of the stress impacting them on that given day.
By: Greg Lineham