My middle is a curious, scientist. He has always asked questions, mulled over information then applied it to life. He’s a geek, like his Dad, and interested in wildlife, space and history. From a young age the planets of our solar system hung suspended above his bed. Then when the lights are switched off, clusters of stars illuminate the ceiling.
Before J came along, our family’s own solar system simply contained the planets of me, husband and S.
In our family’s solar system each of us are planets orbiting a sun, following our own paths like a carefully co-ordinated dance; interdependent, influenced by and reliant upon each other. I suspect most people have something in their solar system that can distort their view, draining too much energy or time. In the past I have found it too easy to slip into an orbit that solely revolves around parenting a child with a disability.
There have been occasions when the moon of disability that revolves around S’s planet has dominated our family life, distorting our trajectories with its dramatic gravitational pull. Occasionally, it has felt as though everything is sucked into its grasp, becoming warped by its power and hold. But this moon is neither my son’s planet, nor our family’s focus.
I used to think the most important factor when making decisions about S’s care or education was what was best for him – but that is no longer my gauge.
Today we try to make decisions in relation to what is best for the whole family.
Considering what keeps our planetary system in order, not just the large disability moon, or even S’s world. It’s a constant work towards not slipping back into the default of a particular flavour of parenting a child with complex needs. Now, when considering a therapy or activity, we ask questions like, ‘How much of an impact will this have on everyone?,’ or, ‘Should the needs of others in the family take priority at this time?’
I haven’t always found it easy to know how to balance my time and energy as a parent and there have been many times when J has missed out at the expense of S’s care. It is easy to allow the large disability moon to dominate, permitting it to become the sun around which our planets circle. We, however, made a very clear decision not to let S or his disability become our sole focus. He still gets a disproportionate amount of time, care and attention, and that is unavoidable, but we make a clear effort to ensure that each member of our family is held with prominence and value.
Choosing your sun is an important activity.
Life can creep up on you and when you look around, the sun you are orbiting isn’t at all what you had expected or intended. It is important to ensure the force that is determining your path is a source of energy and light; one that you want reflected in your life.
A couple of years ago we changed tack and rather than simply responding to the numerous crises life threw at us, we began trying to make intentional decisions that felt more like choices rather than reactions.
We took time to define the sun we wanted to orbit, ensuring our focus and paths were being determined by the values we hold most dear.
For everyone that sun will be different. As a person stumbling to walk through life with an evolving faith, choosing those values need time and space. It is then a concerted effort for us all to stay on path, choosing to be a family and not simply a group of people reacting to the demands of loving someone with very complex disabilities.
To think about this and more about our emotions whilst parenting a child with special needs, you can book onto a Born at the Right Time Parenting Workshop, find more information here. If you are a practitioner supporting families like mine, you can more fully understand our lived experience and how to communicate and work with families better on the acclaimed CPD accredited training, ‘Communication and co-production with relatives and carers in a changing world’. To enquire here about our training. You can also read more of our story in The Skies I’m under.