Type one independence: a cup of tea?

I had a lovely surprise this weekend. My 10 year old brought me a cup of tea he’d made. The “oooh” moment was shortlived. Hot on his heels was my aggrieved five year old, put out she wasn’t allowed to use the kettle yet.

Scalds from hot drinks are a serious business. 16,500 children visit A&E a year due to hot drink scalds and even minor scalds cost the NHS £2.2 million annually, according to Make the Link.

At what point in a child’s life does a kettle transform from a huge risk to something day to day?

A quick review of mumsnet told me that the average age to make a cup of tea independently is 8 or 9. Tea is the stuff of great analogies, so I wondered if it could help with something I have been struggling to explain.

I often get asked “is he independent yet?”

The answer is yes and no. 

I was lucky my son, when diagnosed age 8, immediately started self-administering his multiple daily insulin injections. He performed all his own finger prick tests (around 10 a day) to check his blood glucose. He could identify and treat his own low blood sugar, or “hypos” (all people with well-managed type one diabetes will experience some time below the magic 4 mmol number each week.*). Age 10, he can calculate the amount of carbohydrate in his meals pretty accurately and match his insulin dose, even taking account of the glycaemic index of his food and is starting to think about adapting the dose for planned exercise. (This blog explains this more).

So why does he need support?

Can he, age ten, boil the kettle and make tea? Of course. Is he likely to scald himself? Probably not. Would I be unhappy if I heard Year 5s were boiling water at school without a teacher present or supervising? Probably. And at someone’s house – well, I’d hope the parent was in the room and aware. At 14, I wouldn’t, but I’d expect them to make sure he ran his hand under the cold tap if he did scald himself. Even an adult might need help if they trip carrying the kettle.

My son can give himself insulin unsupervised when at home or at holiday clubs but that would not be appropriate at school yet (for them as much as for him). If on a playdate, he can look after himself, but I’d want a parent to be aware. Even when he is an adult, people around him will need to be aware of the symptoms of severe hypoglycaemia and (to a lesser extent) diabetic ketoacidosis and to be prepared to call for help should the unthinkable happen.

We fund our son’s continuous glucose monitor that links to our phones and alerts him and us BEFORE he goes low so he can often treat to prevent a hypo – he’s boiling a kettle wearing asbestos gloves – but giving insulin (which is lethal in the wrong dose) and treating hypos (life threatening in the rare event they become severe) are serious tasks.

At his age, when sitting and treating a mild hypo, it’s appropriate, and only kind, that he has someone beside him.

But type one diabetes is more complex than boiling a kettle.

We’re fans of children doing chores in our house. Both 10 year olds can make a meal, do a load of washing and visit the village shop by themselves. That is appropriate independence. To expect a child that age to assume all responsibility for household management is something different.  It’s neglect and would have a serious impact on their ability to be a child, and to learn and develop normally.

The time spent on type one diabetes is comparable to managing a household. Constant fluctuation of blood glucose is the norm without a functioning pancreas.** But alongside continually assessing blood glucose levels and making around 50 treatment decisions a day, the tasks are unrelenting. Stocktaking and ordering supplies (more than 25 prescription and non-prescription items from different suppliers), meal planning, weighing, carbohydrate counting, night testing, reviewing data to make adjustments to doses and basal rates of insulin, ketone testing, changing pump reservoirs and cannulas (every 2-3 days), blood testing, inserting and setting up CGM sensors (weekly), writing care plans, educating, training, reviewing and implementing insulin and carbohydrate requirements for different types of sport, arranging sharps bin collection, trip planning, sourcing travel letters and permissions, clinic appointments…

To expect a child with type one to get an education while dealing with this would be absurd. Yet as my son moves to secondary school he will be expected to take on more of these tasks.  He’s a bright cookie, but I wonder what this does to his potential, and most importantly to his childhood. I’ll do as much as he’ll let me for now, and I continue to make sure he has the right support outside the home. The evidence and the law support this (as the Diabetes UK schools guidelines explain).

And finally, researching this blog post I stumbled across these US  “Age Related Guidelines for Diabetes” and was heartened to see: “It is now thought to be very helpful to have a supportive adult for any person with diabetes, no matter what their age.”

“It is now thought to be very helpful to have a supportive adult for any person with diabetes, no matter what their age.”

As my son gets older I’ll move from coach, to co-pilot, to distant admirer. 

But at any age, it’s good to come home to Mum for a nice cup of tea.

*An average proportion of time below 4 for adults with an HBA1C in the target range is 8%.  We are lucky my son currently achieves his target with around 2% of time in mild hypoglycaemia
**Up to 300% difference in insulin needs day-to-day has been found within closed loop insulin pump trials.

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