Losing control

Ever feel like you are losing control?

One of the first things to disappear when becoming the parent of a child with complex needs, is a sense of control. Some people live deluded that they are the masters of their own destiny, but for parents of someone with disabilities, the weeks ahead are shaped by a growing list of professionals and their lengthening to-do lists.

Born at the Right Time training always starts with the experiences of becoming the parent of a child with complex needs. Lived experience is at our heart. For those parents it can feel as though you have fallen headfirst into a Vulnerability Labyrinth.

This sense of losing control is universal to anyone hearing the well crafted words of someone breaking bad news.

The Vulnerability Labyrinth starts with a life-changing event – diagnosis, trauma or defining moment. The experience splits life into before and after; changing hopes, dreams and expectations for the future.

Initially people might hunker down in the eye of the storm, as professionals buzz around. Sometimes it can feel as though life ticks by with the slow monotonous pace of a midnight clock. It is relentless, persistent and unfazed by tragedy.

Then comes the invasion. Every woman and her dog give advice, instructions, options and varying levels of fear or hope.

In the midst of it all … is a sense of losing control.

The past seems so immaterial and the future uncertain. Professionals swarm around using a language and rules not fully understood. People stumble into a rabbit warren of disability jargon and medical liturgy. The rope of life being clung to with gripped hands, slips through ruthlessly. No matter how tightly a person tries to hold on. After fighting reality and its consequences, a person can sometimes be found slumped to the ground deflated and tired. Before long the complexities of disability swell and consume, out sprinting the simplicity of a previously predictable, ordinary life.

The sense of losing control magnifies.

As diagnoses start to accumulate, Google flicks from ally to arch enemy. One minute a lifeline of hope is flung out with a therapy, drug or personal story. Then suddenly an unwelcome stark truth flashes up with an outcomes for which no-one is 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, it is essential to be one of the people who contributes to life-changing decisions. Parents don’t necessarily want the weight of responsibility to lay heavily on their shoulders. They want to be part of a team of specialists and experts who together determine to make the best decision from the available options.

Amidst this losing control, there is a magic wand which can loosen the fear of the Vulnerability Labyrinth

Effective communication

Effective communication between parents, caregivers, patients and professionals is paramount to enabling and empowering people. It allows the opportunity for people to engage in their lives and in the lives of their children. It is the first ingredient necessary for partnership and co-production. The natural gap between parents/caregivers and professionals is real, even though they are both experts in their own right. They both have skills and knowledge necessary for ‘best practice’ to be provided. But the gap can be bridged with effective communication.

Sometimes information will be hard to hear.

Sometimes hard conversations need to happen.

The way a professional builds trust, supports and listens will directly impact the feelings a person, parent/caregiver has when they leave a conversation. Someone might not like what is being said, but if they feel heard, if they trust the person speaking, if they believe they have the family and child’s best interests at heart, then the sting of hard news can be easier to bear.

After all is said and done, no-one wants to be left swamped by a vulnerability labyrinth scrabbling for control. Rather, with effective communication, they want to feel like an essential part of the team of professionals trying to work together to provide best-practice and person-centred care.