If you have ever had the privilege of teaching a child to read, you will truly understand the meaning of the word frustration. There will be times when you’re tempted to shelve the entire endeavour and opt for the seemingly more achievable task of nailing jelly to a wall. Or herding cats. But if you persevere, in front of your eyes, like a butterfly from a chrysalis, emerges a literate being. One who is able to decipher the written word & instructions that surround us in our daily lives. If you’ve ever tried to teach more than one child to read, you will know that there isn’t one, single, fool proof way to teach another being to read. Annoyingly, the teaching will need to be altered & nuanced for the individual child. You’ll be required to identify this & adapt accordingly. This is not always easy or straightforward. The results may not always be consistent. Not every child will become an avid reader. But every child, in order to fulfil their own potential in their world, will need to read.
What does this have to do with T1 I hear you ask? Well for me, helping my daughter to understand & manage her T1 is a lot like teaching her to read. Initially I needed to do everything for her but would explain to her infant self what Mama was doing & why. Akin to reading stories to a small, illiterate child. You hope to engage & encourage them in their independent desire to discover how to read for themselves. As she grew & gained more dexterity she mastered the art of bg checks in her second year. She also learned how to convey when she was hypo by articulating it as feeling wobbly. The Dr Seuss of the reading world. As she grew she learned how to operate her pump her understanding of why she needed insulin began to increase – food would be greeted with an “Ohhhh. Yummy.” & then a “How much insulin do I need for this?” This was the start of her “reading” longer books, with stories & plots to follow. She’s now exploring the library of her diabetes & trying out new things for herself. Her very own journey of discovery through a vast array of constantly changing literature – advise that was once held as gospel & the only way to manage T1 is slowly altering. The dictates from some HCPs are gradually becoming fewer as a new generation of professionals take up senior posts with their own appreciation of the complex mistress T1 can be. No one answer right for all. The agenda & assistance offered needs to be tailored to each individual patient. Just as it was when we learned to read. For the most successful readers amongst us were lucky enough to have a teacher who recognised our needs & reacted to them.
I have blogged in the past about the importance of ensuring a child is respected and considered in every consultation, regardless of age or level of understanding. This is about the child. Not the consultant. Or the specialist nurse. Or the dietician. And most importantly, not all about the parent. As the parent in that consultation it is my responsibility to ensure that my child’s voice is heard and her needs are addressed. If I have concerns or need support then as the adult, I have the opportunity to contact the DSN by phone or email at another time when she is not present. In clinic, it is paramount that her issues are addressed and it is a collective responsibility of all the adults present to facilitate this and not conduct a consultation over her head. This is not an easy thing to do. And I will confess to not always managing to achieve these standards. But, I do have an aim and most of the time it is reached.
I am aware that this may not be a popular view. All too often, and for very understandable reasons, the line between patient and parent becomes blurred as the exhausted, sleep deprived parent seeks solutions to alleviate some of their onerous burden. Equally, I know of consultants who will address the parents/carers in the main, whilst the reason for the meeting sits quietly amidst all the noise, totally lost and forgotten in the malai.
In truth, the responsibility of parents & those charged with caring for children & young people with T1 is to ensure they are fully literate when they embark on their independent journeys. Just as I was the only voice for my daughter before she learned to speak, I now act as amplifier. As she becomes more & more articulate she needs less amplification – she’s become more fluent in her reading. I no longer need to sit at her side to hear her read aloud. I now support her in her independent choices & provide guidance instead for questions posed, whilst hopefully equipping her with the skills to go out & seek the answers she desires.
For once literate, there is nothing that cannot be discovered.