In 2016, we reported on the death of Blake Cook, a 15-year-old teenager with Type 1 diabetes. Blake had been given control of his Type 1 diabetes management and had apparently stopped caring for his glucose levels when he was sick. Recently, a mother of a teen with Type 1, Penny Robinson, wrote with her thoughts on whether or not to give teens with Type 1 complete control of their diabetes self-care. Here’s what she wrote to us:
I have a 15-year-old daughter with Type 1 diabetes who was also diagnosed at age 2, and is also living in the UK. It is nonsense to think of “handing over” diabetes care to a teenager at any one point in life, such as a birthday. Giving your child control of his or her diabetes care is a gradual process that proceeds two steps forward, one step back; it’s fluid and varies. The brains of our adolescents don’t stop developing until well into their twenties, and until then they still need help and support, albeit in more subtle ways than before.
The handover starts from diagnosis, as the child needs to be involved in their care from the beginning. Children learn as they go along, mostly without any conscious teaching on our part. It’s really hard to decide at what point to take each small step in ceding control. Often, it is the kid who takes the lead.
Fifteen-year-olds want to be independent, but hey must learn the correct way to care for themselves before they do it all on their own. Instilling that knowledge while providing the right level of support is a difficult balancing act, especially when 15-year-olds are not keen on communicating, being reasonable, or engaging with anything that feels like a chore.
Read more: When a teen stops treating his Type 1 diabetes.
Fifteen is about the time when kids start to realize the enormity of having Type 1 diabetes for the rest of their lives. They realize it’s not going away just when they are desperate to get out and taste the world. That thought can have a devastating effect on their ability to incorporate diabetes self-care into their daily lives, and they can feel very isolated. There are times when all 15-year-olds just need a day off from diabetes, and parents should be willing to step in if necessary, for a day, a week, or an hour, without recrimination.
People often tell me that “surely your daughter is old enough to take care of herself now.” Of course she is…until she finds her glucose is at 26 mmol/L (468 mg/dL) because the pump has stopped working, she has ketones, and she’s out with her friends at the cinema in France on a school trip. Resolving such a situation takes initiative, calm, intelligence, mathematical ability and advance planning; how many 15-year-olds can claim those attributes all the time?
We are asking our kids to take on a huge burden in managing their own diabetes alone. We have to let our teenage kids know that they can come back and hand it back over to us at any time. They will have a whole lifetime of dealing with it on their own, so what’s the hurry?
This story has been lightly edited for clarity and to Americanize some of the language.
7/20/2017 – Due to an editorial error, the glucose reading in this story was given in the measurement of mg/dL, when it should have been listed with the measurement of mmol/L. We have corrected the error.
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