In our field, it is not uncommon for practitioners to gain accolades from others for the work we do. We are praised for being kind, dedicated, and having big hearts for working with our children with special needs and their families. I do not diminish the work that my colleagues and I do, and that they are some of the kindest and most dedicated people I have met. In this blog, however, I would like to address the often unsung heroes within the field of special needs. The families themselves.
As behavior analysts, we have been given the incredible privilege to be that proverbial fly on the wall; to observe and study human behavior in its natural setting in a way that many scientists dream of, but never get to do. While I have observed many things over the years, the biggest lesson I have learned from these families is that of unconditional love, perseverance, and humility. Many anecdotes come to my mind, but this particular one stands out, as it taught me the meaning of Grace.
I served a young man and his family in Florida some years ago. He was diagnosed with severe intellectual disability, cerebral palsy, was blind and deaf with limited ambulatory abilities and was confined primarily to his bed and wheelchair. The family struggled fiscally and the home was modest, small, and very cramped, with this young man’s bed situated in the living room. I entered his home one day, grumpy at the thick Florida heat and the broken air conditioner in my car. My mood lifted upon entering the home as I was greeted with a loud exclamation of delight. The next 10 minutes were taken up by our ritual of examining each of his toys, talking about his meals, and whatever upcoming celebration he was looking forward to. The joy and love that radiated from this young man always moved me. As if in direct spite of the hand dealt to him, he was determined to be as happy as he could with his life.
In the midst of my visit, he had a toileting accident on his bed. I stepped back and watched his family move into action. What I witnessed on that hot and sticky Florida day still plays in slow motion, like a movie reel in my mind. It may seem mediocre to some as they read this, and some may blame delirium from the heat for romanticizing the moment, but for me, it was the sign that said “Alert! Grace is heading your way and this is what it looks like”!
I stood back and watched the perfect orchestration occur between father, mother, and son. Not only did this 230 lbs young man need to be changed, but he also needed to be escorted to the bathroom, cleaned up, and placed into fresh clothes. His bed needed to be stripped, sterilized, and fresh linen placed back down. All of this had to occur with the most precise timing and engineering of movement due to the limited space in the home. I watched this scene unfold, in perfect synchronization, like a well-rehearsed waltz. The mother fetched the sheets and rolled the chair to the bed. The son held out his hands, swung his legs over, and braced himself against the strong back of his father. His mother gently lowered him into the chair, double stepped, turned, sashayed, and switched places with his father. His father rolled him into the bathroom and proceeded to clean his son. The mother stripped the bed, placed it in the wash, sprayed down the mattress, wiped it, and pulled out her son’s clean clothes for him to change into. The father came back, held one end of a clean and white cotton sheet as his wife held the other and together, they snapped the sheet up in the air. This scene remains vivid in my mind’s eye. The sound and smell of a freshly laundered white cotton sheet snapping in a tight space that barely held four people, billowing above the bed, and the tan, lined, and sun-worn faces of his parents appeared on the horizon as the sheet cascaded down. Their faces held no frustration, no anger, and no irritation. Only love, patience, and acceptance. They placed him back in the chair and rolled him back into the living room. Double step, turn, sashay, and step, they switched places. His mother hoisted him up; the brace on her wrist was the only indication of the strain her body had gone through over the years of caring for him. The son sat on the bed and his father placed his hands under his armpits and pulled him up as his mother swung his legs back onto the bed. The bed was adjusted, the pillows fluffed, and the son rattled out the litany of toys that he wanted on the bed with him. With ever-present patience, his parents found him each and every toy he requested. As he settled in grinning, pretty satisfied with life, his mother leaned over and kissed him on the head. He reached over with one arm, encircled it around her head, and pulled her close for another kiss. He exclaimed, “Momma . . . I love you Momma”, and she blew a raspberry on his cheek. And it struck me. Grace in Motion. I had just bore witness to Grace put into Motion.
This young man and his family taught me more than I could ever teach them. My expertise in the field helped them understand how to prevent and de-escalate their target behaviors. Because of that, he was able to go out into the community without aggressing, take his medicine without an issue, and decrease his self-injurious behaviors. Their unconditional love, however, taught me how to parent with grace. They bore their yokes with dignity, love, acceptance, and dare I say, even joy. Grace in Motion. Would I ever have the grace, patience, and courage to care for a loved one that way? Would I ever be able to humble myself to complete and total care of my loved one without complaint, preserving their dignity and mine, the way the parents of children with special needs often do? The heroes are not us. We are simply a few lucky ones, given the privilege to work alongside these unsung heroes.