A networking and information-sharing site for people who access cerebral palsy services and supports in NSW

Saturday, 24 March 2012

There were two wonderful articles in the SMH's Good Weekend Magazine of March 17.
The first, by Fiona Harari, entitled "The Here and Now"  (click here to read -  THE HERE AND NOW) describes the experiences, feelings and thoughts of parents coping with the knowledge that their children have life-limiting illnesses and severe disabilities.
The emotion that shines through this article is love; profound love between parent and child. Not the pointless, futile, desparing and agitated wish that their children had never been born, or that medical science could somehow find some miracle "cure" and save their children's lives, but what Harari describes as "a very spiritual bond. Their love for their child and their child's ability to survive against the odds is their inspiration. It's the thing that keeps them going". 
Harari writes of a mother called Yvette Pieri, whose 16-year-old son Adam died five days after she was intervewed for this article, and who told Harari: "I think the love he gives me keeps me going".
Harari goes on to write that Yvette Pieri's response "tells of an extraordinary bond that transcends her son's inability to speak. In families such as Yvette's, where you might expect to see darkness there is also laughter, intense love and a defining sense of proportion... Mostly, what worries parents like Pieri is that their children are in pain. Underlying everything they do - as they battle social and medical services, a lack of transport, frequent isolation and strained finances - is an overwhelming need to keep their sons and daughters as comfortable as they can."
I think many, many parents of children, teenagers and adults with disabilities would identify and agree with that observation.
A palliative care nurse also interviewed for this article said: "The most humbling, spiritual moments of my life have come through my work. We get to see the extraordinary nature of people and the extraordinary power of parental love every day".

Meanwhile, there was another inspiring article by Janet Hawley, entitled "How To Rewire A Brain" (at How To Rewire a Brain) featuring an extensive interview with a Canadian woman called Barbara Arrowsmith-Young who instinctively realised, several decades before the vast majority of doctors and medical scientists, that brain injury and damage can be overcome by intensive brain exercise (otherwise known as "learning"). 
Hawley writes: "Without realising it, Arrowsmith-Young was utilising the principles of neuroplasticity, at the same time that scientists were only beginning experiments in this field. Previously, science had contended that the brain is hardwired at birth. This view of the unchangeable brain has since been overturned by numerous clinical trials that show mental exercise and mental experience can alter its structure."
Yet more evidence that education and learning-based intervention methods like Conductive Education, developed in Hungary around 70 years ago now by a rehab physician, Professor Andras Peto, have been on the right track all along, and that the gloomy, medical-model approach to disabilities of neurological origin like cerebral palsy - resulting in children being written off in effect, strapped into wheelchairs from the age of three or four, surrounded by mechanical aids and offered only token therapy form then on, has been on completely the wrong track.
Funny, isn't it, how so many medical-model, allied health professionals like physios and OTs have thought of themselves for decades as part of the solution, when in actual fact they were part of the problem all along?
Umm, yes, totally hysterical.

Sue O'Reilly

1 comment:

  1. I read Fiona Harari's article, "The Here and Now" and could totally relate to the range of emotions - devotion, loss and the overwhelming desire to minimise pain and discomfort suffered by your much loved child. 3 years after the loss of my son I will always consider his life a gift and am thankful for the insights and wisdom that I gained along a journey that no parent would ever wish.