Measurement
The heart of science is measurement (Erik Brynjolfsson).
I am an Ecologist, so a scientist. I continually measure, analyse and evaluate what I do, at work and within our family, to inform future direction. This is so I, and the teams I work within, can achieve better results. I am not afraid to change things, even if they have been in place for a long time. This week my ability to measure was challenged. On Thursday afternoon we completed a back-dated Needs Assessment for Rory with Fiona from ACC. This was to measure the additional input Sean and I have had to provide, above what is considered ‘normal parenting’, for Rory as a result of his impairments. To prepare I went back through the diaries I have written since mid-2017 to summarise what has happened to Rory and what support we have provided. The synopsis felt clinical, simple and two dimensional but in reality it was the opposite. I struggled to demonstrate to ACC the complexity and enormity of what was involved. It wasn’t just the tasks we performed. As Rory’s primary carer I poured myself into his life and did my utmost to ensure he received the best of what was available. How do we measure this value-add and what it has cost? Maybe we can’t. Maybe we don’t need to. Being Rory’s mother has enriched my life in ways I cannot begin to describe. I only have to look at my son to feel pride. I know he has a good life in spite of everything. As long as I am on this journey with Rory I will continue to fight for him. That is what good mothers do.
Rory’s weekly programme continues thanks to the wonderful people who support him; Phil, Caleb, Tash, Peter, Deanne and Sean. The ACC appointments are interspersed within our week. I have had a phone call with Jes to discuss our progress and Sheila visited to share tips for Rory’s speech. He needs to work on using a strong voice with an open mouth so he can be heard and understood.