Today I am in Fort Lauderdale, Florida, at a conference of the American Association of CP and Developmental Medicine. Yesterday I had the privilege of giving the Chambers Family Lifespan Lecture. It was a big opportunity for me to give voice to the changing relationships between our family and Nick’s treatment team that I’ve observed over 28 years. This conference is about childhood disability, but I believe the lessons I have learned are relevant for any family caregiver working with a team of professionals.
Here’s a snippet from my remarks:
I’ve been trying to think of an analogy for relationships between families and medical professionals. The image that came to me is a night out dancing with friends. I love to dance!
I try to dance every day, either in a class or at home alone. Dancing is good exercise, but it has purposeful communication at its core. And it’s a lot easier to do alone. Dancing in public means that we have to risk the embarrassment of missteps. Going out on the town to dance, everyone prepares carefully for an exciting night out and maybe romance. Let’s extend that analogy to assume that one group of friends consists of clinicians and the other of families. In the 1980’s and into the 90’s, a set of social protocols prevented any intermingling of the two groups. People would nod and smile across the room, but no real conversation took place. Everyone stuck to their group and talked amongst themselves. No one dared to dance and slow dances were unthinkable. Everyone pretended the night was great, but secretly, they were disappointed.
I’ll give you an example of how this analogy played out in my family.
After several months of intake assessments at our children’s treatment centre, I received a letter inviting Jim and me to our first case conference. The letter said we would discuss Nick’s progress in therapy and the results of his cognition testing would be shared. At this meeting, the team would recommend a preschool placement. Nicholas was just over a year old at the time.
I had begun to understand that often, important meetings about Nicholas took place amongst professionals without Jim or me there. I pleaded with our social worker to include us in ALL discussions about Nick and she nodded sympathetically, promising to communicate our request to the team. On the morning of our case conference, I fixed my eyes on the boardroom door, trying to assess if our team was inside and meeting without us. Our social worker finally swept around the corner and apologized for the delay in proceedings. She ushered Jim and me into the boardroom where our treatment team members sat at a table strewn with half full coffee cups and file folders. I realized the boardroom was between hallways and a second door was where everyone had entered an hour before. Decisions had been made and now they would be announced to us. In this ‘consultation’, my husband and I had one job as parents: to agree with the recommendations. I remember a feeling of dread rising in the pit of my stomach, thinking, “We have given up our child to a system that does not see or hear us.”
All of us reach our goals with the help of others, as a team. It’s no different between families and members of our professional treatment team. But to be a strong team, we have to come together as equals and we have to speak honestly, with kindness and with respect. And if we dance, let it be the tango where hearts are cracked wide open and most importantly, the lead passes back and forth between the two partners. In the tango, there’s no faking feelings or intentions. Steps are complicated, so there’s a near certainty of missteps. But no one minds because each partner is committed to completing the dance.
George Bernard Shaw said, “The single biggest problem in communication is the illusion that it has taken place.” Let's dance together in the real world, under no illusions, for the sake of your patient and my son.