Type 1 Diabetes and School Trips: Do Parents Really Have to Go Too?

The first time my daughter went abroad with school, I chose to go too.

Not because the school told me I had to.

Because I was worried.

She had never been abroad without us before. She had Type 1 diabetes. I didn't know how I would feel about her being in another country, relying on other people to recognise what she needed.

So I made a decision that worked for us.

I booked my own flights. I found somewhere to stay. I travelled separately and stayed nearby while she went on the trip with her school.

And do you know what happened?

Nothing.

Nothing that required me to be there, anyway.

I answered a couple of questions by text. That was about it.

I didn't provide her day-to-day care. I didn't need to step in. I wasn't accompanying the school group.

I was simply nearby because I had chosen to be.

(and it helped they were in Barcelona - it was a huge privilege to go!)

And that distinction became rather important the next time there was an opportunity for an overseas school trip.

Because this time, the school told us they couldn't take her unless I went too.

And suddenly, something I had previously chosen to do had become something I was expected to do.

That's a very different proposition.

Particularly because this time it was Madrid - so similar but apparently very different. And this time I couldn't travel due to work and significant health issues of my own.

The hidden cost of being the backup plan

When we talk about young people with Type 1 diabetes going on school trips, the conversation often focuses on whether the young person can be safely supported.

Of course it does.

We need to know that someone understands their diabetes. We need appropriate arrangements for medication, food, glucose levels and emergencies. We need staff to know what to do if something goes wrong.

But there is another question that doesn't get asked nearly as often:

What happens to the parent when they become the solution?

Because the answer isn't simply "the parent goes on the trip."

The parent has to:

• take time off work

• pay for travel

• pay for accommodation

• potentially arrange childcare for other children

• reorganise family commitments

• remain available

• and, quite often, take on the responsibility for making the whole thing possible.

And that is on top of everything we are already doing.

Because having a child with Type 1 diabetes doesn't remove any of our other responsibilities.

We still work.

We still have partners, friends, other children, homes, bills, ageing parents, hobbies and lives.

And we are still parents.

But Type 1 can add another layer of responsibility that is difficult to see from the outside.

We don't really get to switch off

One of the hardest things about being a parent of a young person with Type 1 diabetes is that the responsibility doesn't neatly stop when your child leaves the house.

You might not be physically caring for them.

But you're still listening for the phone.

You know the school could call.

You know there could be a problem with their insulin.

You know their glucose could behave unpredictably.

You know there could be an illness, an injury, a missed meal or something else that suddenly requires you.

Even when somebody else is responsible for your child, part of your brain can remain on standby.

That's a form of mental load in itself.

And when opportunities for somebody else to take that responsibility do come along, they matter.

A school trip could be one of those opportunities.

Your young person gets to be with their friends experiencing something new.

Your young person gets to experience something without you.

And you get a little bit of time where you aren't the person responsible for managing their diabetes.

That doesn't mean you want to escape your child.

It doesn't mean you don't want to be involved.

It doesn't mean you love them any less.

It means you are a human being who occasionally needs to be Rebecca, or Rob, or whoever you were before you became parent of a young person with Type 1.

Independence isn't just for the young person

We talk a lot about helping young people with Type 1 diabetes become independent.

And rightly so.

Independence doesn't suddenly arrive on their 18th birthday.

It is built through lots of tiny experiences.

Letting them explain their diabetes to somebody else.

Letting them carry their own supplies.

Letting them make decisions about their food.

Letting them spend time away from us.

Letting them go to a friend's house.

Letting them start managing parts of their diabetes themselves.

Letting somebody else support them while we step back.

And eventually, letting them go away without us.

These things can feel enormous when your child has Type 1.

But they are all small pieces of the same bigger picture.

We're trying to raise a young person who can live their life with Type 1 diabetes, rather than a young person whose life is organised around having Type 1 diabetes.

And sometimes the systems around them don't make that easy.

Because independence requires somebody else to step back

This is where I think we need to have a bigger conversation about parental capacity.

If the answer to every difficult situation is:

"The parent can do it."

then the parent gradually becomes the infrastructure.

Need somebody to monitor them?

The parent can do it.

Need somebody to accompany them?

The parent can do it.

Need somebody to travel?

The parent can do it.

Need somebody to be available overnight?

The parent can do it.

And because we love our children, we often do.

That's the problem.

Our willingness to carry the extra load can make the load invisible.

We become incredibly good at making things work.

We rearrange work.

We spend the money.

We cancel things.

We drive across the country.

We stay nearby.

We answer the phone.

We fill the gaps.

And eventually, what started as exceptional support can become the expectation.

The impact on parental identity

This matters because parental capacity isn't infinite.

There are only so many hours in a day.

Only so much emotional energy.

Only so much money.

Only so much time away from work.

Only so much mental space.

And when Type 1 takes up a disproportionate amount of that capacity, there is less left for everything else.

Including ourselves.

That's where I think the conversation about parental identity becomes important.

Because you can gradually become the parent who manages Type 1.

Not because you chose that identity.

Not because you don't have interests or ambitions outside your child.

Not because you want to be defined by diabetes.

But because there is always something that needs doing.

And if other people and systems keep reinforcing the idea that you are the person who needs to step in, it becomes increasingly difficult to step back.

Even when stepping back would actually be good for your child.

And good for you.

The cruel irony of respite

This is perhaps the bit I find most frustrating.

A tiny opportunity to switch off can become a huge battle to obtain.

A school trip could mean several days where somebody else is responsible for your child.

For some parents, that might be an opportunity to work without worrying.

To spend time with another child.

To go somewhere with your partner.

To have lunch with a friend.

To do absolutely nothing.

To remember what it feels like not to be monitoring someone else's health.

But if the price of that opportunity is that you have to organise, fund and facilitate the trip yourself, the benefit starts to disappear.

Instead of receiving respite, you've taken on another project.

Another thing to organise.

Another cost.

Another set of arrangements.

Another responsibility.

Another demand on the very capacity you were hoping to replenish.

And that is the paradox.

The opportunity to switch off can itself become exhausting.

So, do you really have to go?

Sometimes the answer will be yes.

There will be situations where a particular young person needs support that a school genuinely cannot provide without additional help.

And sometimes, as parents, we will choose to go because we want to.

That's completely different.

I chose to go on that first trip.

I had the means to do it.

I was worried.

I wanted to be nearby.

And nothing happened that required me to intervene.

The important thing isn't that I went.

It's that I chose to go.

The second time, the circumstances were different.

And when a parent is told that their presence is the only way their young person can access an opportunity, we need to be prepared to ask some questions.

Is the young person actually unable to participate without their parent?

What support can the school reasonably provide?

Is the parent being asked to provide support that should otherwise be arranged by the school?

What happens to the young person's independence if the answer is always "bring Mum or Dad"?

And perhaps most importantly:

What is this asking of the parent?

Because parents have capacity.

But we don't have unlimited capacity.

Knowing your rights matters

If your young person has Type 1 diabetes and you're dealing with school support, trips or questions about what your school can and can't provide, it can be incredibly difficult to know where the line is.

You don't necessarily know what you're entitled to ask for.

You don't necessarily know what other families have experienced.

And you don't necessarily know whether something you've been told is actually the only option.

That's why connecting with other parents can be so valuable.

There are parents who have navigated these situations before, asked the difficult questions, challenged decisions and learned more about Type 1 diabetes and school support along the way.

One resource I'd particularly recommend is the T1 Children - Rights At School Facebook group, which supports parents navigating Type 1 diabetes and school.

It's a useful place to hear from other parents and get support when you're trying to work out what is reasonable, what to ask for and where to go next.

Young people with Type 1 deserve independence too

Young people with Type 1 diabetes should be just as entitled to independence as anyone else.

A young person with T1 can absolutely go to university, live away from home, travel, have relationships, have children, build a career, do all the ordinary adult things. They may continue to need some level of oversight or support, just as many adults do for lots of different reasons.

But before they get there, when they're 8, 12, 16, the parent can be carrying an enormous amount of responsibility that the parents of their peers simply aren't carrying.

They should be able to go on school trips.

They should be able to sleep at friends' houses.

They should be able to go camping.

They should be able to travel.

They should be able to go to university.

They should be able to live away from home.

They should be able to fall in love, build careers, have families and create lives that aren't defined by Type 1.

I don't doubt that they will.

What I sometimes doubt is whether we talk enough about what it takes to get there.

Because during those years when they're still young and the responsibility sits with us, every one of those milestones can require more from a T1 parent than it does from the parent of a young person without diabetes.

And when that extra responsibility is continually reinforced — Mum or Dad needs to come too; Mum or Dad needs to be available; Mum or Dad needs to sort it out — it becomes very easy for a parent to start believing that this is all they are.

A carer.

Not because they don't have anything else going on.

Not because they don't have ambitions, interests, careers, relationships or identities outside parenting.

But because there is always another thing that needs doing.

And that is why parental independence matters too.

We need our young people to learn that they can live their lives with Type 1.

And we need to make sure their parents don't spend eighteen years learning that their own life has to revolve around it.

Type 1 diabetes is something our children live with.

It shouldn't have to become the only thing their parents live for. Want to join the conversation? If this has affected you, I'd also love to hear more from people who understand this from different sides of the experience — because this is a conversation that deserves more than one perspective. Pop a comment below or use the contact form to drop me a line.

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