My son is a storybook, not a textbook - Know the data, but remember the individual!

It is not every day that you can say you inspired an editorial. The honour was great when something I said in a research course, (Envisage: ENabling VISion And Growing Expectations for parents of children with neurodevelopmental disabilities) struck a chord and inspired Dr. Peter Rosenbaum to write about it. Simply put I like to stress to anyone who will listen to me that my son is not textbook, he is a storybook and only by taking the time to let him tell his story, or have his family tell a part of it, do you truly get to understand him as an individual.

This analogy began when a good friend had come over to help me after surgery where I could not lift William for 6 weeks. We sat there as she played with him and discussed how frustrating it can be that some professionals seem to think that William should follow a certain pathway but he refuses to do so and equally frustrating to not be able to predict what he will or will not be able to do because he is so far from being predictable. We discussed that he could not simply be found in a chapter in a textbook, and then the moment of lightening happened with the thought - but he isn't a textbook, he is a storybook.

This has grown into so much more. I am not in any way saying we don't need the textbooks. In fact the knowledge found is essential, but we need members on our team who are willing to take that foundation and think outside of the limits of those books, because he is so unique. Beyond that though this phrase means something even more important. It has everything to do with patient led care. In a time of budgetary costs, deadlines and overworked health systems that are teetering on a precipice (something COVID - 19 certainly made many aware of) there is often not enough time for doctors, nurses or therapists to get to know their patients.

I understand the time constraints and giving each patient equal time, but I am afraid that by missing out on my child's individuality, then you can never truly treat him properly. I read a response to my analogy from a patient advocate who truly dislikes the term of "story" as the work can be seen as fictional, as something to be written off, but here is where we differ. Perhaps it is the English Teacher in me who see the power of the story, who feels that it is in our stories that we truly can make a difference.

Whether you call it story, environment, the f-words of childhood disability, or whatever you call it, when you come to treat my child - take the time to talk to him, let him get to know you, give me the opportunity to speak for my son where he can't, for I truly believe it is by knowing your patients that you will find the power to provide the best care that they do indeed deserve.

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I am extremely grateful for Dr. Rosenbaum for hearing me and helping me to feel heard by many.

To read his editorial please see https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.14491

and to view the interview where I learned much about how not to light my face see https://www.youtube.com/watch?v=E9NyZAUIqfA

Thank you as well to Amy for helping me find the words to describe how I feel.