Ever feel like you are losing control?
One of the first things to disappear, when I became the parent of a child with complex needs, was a sense of control. Once I foolishly thought I was the master of your own destiny. Suddenly, the weeks ahead of me were moulded and shaped by a growing list of professionals and their lengthening to-do lists.
As we celebrate a New Year, 2019 is stretched out ahead of me. My shiny, new calendar is hanging on the wall. The empty diary pages sit expectant and ready to be filled…of course they aren’t.
The diary has been filled for months with appointments and therapies, tasks and responsibilities. I now train professionals and lead workshops with parents. When I do I talk about my experience of becoming the parent of a child with complex needs. It felt as though I had fallen headfirst into a Vulnerability Labyrinth.
I suspect a loss of control is the same for anyone who has heard the carefully crafted words of someone breaking bad news.
In the beginning, there is a life-changing diagnosis, trauma or defining moment. The experience splits life into before and after; changing hopes, dreams and expectations for the future.
Then as I hunkered down in the eye of the storm, people buzzed around. Sometimes it felt as though life ticked by with the slow monotonous pace of a midnight clock; relentless, persistent and unfazed by tragedy.
Then came the invasion. Every man and his dog gave advice, instructions, options and varying levels of fear or hope.
In the midst, all that was left was the present.
The past seemed so immaterial and the future uncertain. Professionals swarmed around using a language and rules not fully understood. I stumbled into a rabbit warren of disability jargon and medical liturgy. The rope of life I had been clinging to with gripped hands, slipped through ruthlessly, no matter how hard I tried to hold on. Instead I slump to the ground deflated and tired, my fingers raw and throbbing.
Soon the complexities of disability swell and consume, out sprinting the simplicity of ordinary life.
Then sitting at my computer, in the wee small hours of the night, Google flicks from ally to arch enemy. One minute a lifeline of hope is flung my way with a therapy, drug or personal story. Before long a stark truth flashes in front of my eyes which I am ill prepared to see in black and white. Compounding this sense of confusion is the lingo, language, secret policies and protocols that frame the social, healthcare and educational world.
“This life changing therapy can’t happen until you’ve seen Dr Important.”
“You can’t access this opportunity until you’ve got this diagnosis.”
“Yes, you need to see this specialist, but that professional has to refer you and they have a three-month waiting list.”
As a parent, or simply a person trying to determine their own destiny, sometimes all I want is to be one of the people who contributes to the decision. I don’t necessarily want the weight of responsibility to lay heavy on my shoulders. I want to be part of a team of specialists determined to make the best decisions.
Thankfully there is hope.
There actually is a magic wand that can help loosen the fear of the vulnerability labyrinth.
Effective communication between parents, carers, patients and professionals is paramount to enabling and empowering people. It allows the opportunity for them to engage in their lives and in the lives of their children. It is the first ingredient necessary for partnership and co-production. We must recognise the natural gap between us and professionals. Yes, we are both experts in our own right. We both have skills and knowledge necessary for ‘best practice’ to be provided. But the gap between us needs to be bridged with effective communication.
Sometimes information will be hard to hear.
Sometimes hard conversations need to happen.
But the way a professional builds trust, supports and listens will directly impact the feelings a person, parent or relative has when they leave a conversation. I might not like what is being said, but if I feel heard, if I trust the person speaking to me, if I know they have me and my child’s best interests at heart, then the sting of hard news is easier to bear.
After all is said and done, I don’t want to be left swamped by a vulnerability labyrinth searching for control. Rather, with effective communication, I want to feel like an essential part of the team of professionals trying to work together to provide best-practice and person-centred care.