15 Jan 2019
One of the first things to disappear when you become the parent of a child with complex needs is a sense of control. Where once you felt the master of your own destiny (foolishly or not) the world and your week become shaped and determined by other people and their growing list of tasks.
It’s the beginning of the New Year.
2019 is unravelling before our eyes.
A shiny, new calendar is hanging on the wall.
The empty diary pages expectant ready to be filled.
The diary has been filled for months with appointments and therapies, tasks and responsibilities.
When I train professionals and lead workshops with parents, I talk about the initial experience of becoming the parent of a child with disabilities. To me it feels as though we fall headfirst into a Vulnerability Labyrinth and is probably the same for any person who has heard the carefully crafted words of someone breaking bad news.
In the beginning, there is a diagnosis, trauma or significant event. We experience a defining moment that splits our life into before and after; changing our hopes, dreams and expectations for the future.
Then often, we sit in the centre of the storm as people buzz around. Sometimes it feels as though life goes in slow motion. Everything around us happens relentlessly as every minute ticks by with the slow monotonous pace of a midnight clock.
All we have is the present
The past seems so insignificant and the future unknown. The people surrounding us start using language and constructs that we don’t understand causing us to stumble into a rabbit warren of disability jargon and medical liturgy. The rope of life we have been diligently climbing shoots through our gripped hands, no matter how hard we try to hold on. Instead we slide to the ground deflated and tired, leaving our fingers red and raw.
Very soon, that age old saying becomes true; the tail begins to wag the dog.
The complexities of disability morph and grow, out sprinting the simplicity and ordinariness of family life.
Then sitting at our computer, in the wee small hours of the night, you find yourself scrabbling for information – for control. Google becomes a best friend and arch enemy. One minute a lifeline of hope is flung your way, quickly followed by a stark truth you are ill prepared to read in black and white.
Compounding this sense of confusion is the lingo, language, secret policies and protocols that frame the world of disability.
“Such and such can’t happen until you’ve seen this person.”
“You can’t have this help until you’ve got this diagnosis.”
“Yes, you need to see this therapist, but that professional has to refer you and they have a three-month waiting list.”
As a parent, as a person just trying to determine their own destiny, sometimes all I want is to simply be a person that contributes to the decision. I don’t necessarily want the weight of responsibility to lay entirely on my shoulders, but I want to be part of the decision-making process.
But there is hope.
There is something that can help dispel this vulnerability labyrinth.
There is a magic wand.
Effective communication between parents and professionals is paramount to empowering and enabling parents to engage in their lives and in the lives of their children. It is the first ingredient for partnership and co-production. There is a natural gap between parents and professionals. Both are experts in their own right. Both have skills and knowledge necessary for best care to be provided. But the gap between them 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 sitting in my vulnerability labyrinth scrabbling for control. Rather, with effective communication, I can feel like an essential part of the team of professionals trying to get the best for the person I love.
For training in effective communication between parents and professionals check out the Goldsmith Centre and Born at the Right Time. In a time of austerity and uncertainty we need to ensure the way we communicate improves each other’s lives and the lives of the children we love and serve.
Written by Rachel Wright for Simple Stuff Works.
Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include conferences, leading workshops with parents as well as training professionals.