Children with diabetes
When you're first told,
it's a relief you've been told he's got something up with him
but at the same time, a bit of bereavement,
the fact that now your son's got a condition
that he's going to live with long term.
Overnight, you've gone from having a healthy three-year-old running about
to, suddenly, an unhealthy toddler.
We tend to assume with adults
that, well, if you give them a load of diabetes information
and a box of tricks, they'll get on and sort it out themselves.
And probably that's true.
For children, that's not the case
because, in a sense, that responsibility is delegated
to the parents.
Finding out our children were both diabetic,
you've lost something and you have to become a different family.
You suddenly have to become medical professionals.
And you are the first line of care for your children.
Your big concern is when they go off to school
because you've always managed, as a family, the child diabetes,
then your child's at school for six, seven hours
and somebody else is going to take over the control of the child's diabetes,
which is quite hard for some parents to accept.
It's absolutely critical that we get the school or nursery care
as right as is possible
and this does require quite an integrated approach
between the families and the school.
Some of Joe's teachers, really good and the school's been really supportive
and yet still there are times when a supply teacher comes in,
you know, who hasn't... Somehow, the message hasn't got through to them
that they've got a diabetic child in their class today.
It's a lot of a hassle
because, I mean, when you're like high in class,
you have to go and get your lunch box or wherever you keep your insulin,
get it out, you have to check how many you need,
you have to inject it.
Sometimes, you even have to phone up your mum if you forget,
to see how many you need.
They get interrupted all the time when they're playing,
they have to eat when they're already full.
They can eat a full meal and be low two hours later and they have to eat.
Lots of things that they have to put up with.
I say to my children, "You can complain about this as much as you want to."
"You can shout and get cross but it has to happen
because it keeps you alive, it's that simple."
Even to this day, I hate watching him give it to himself.
I can inject him, no problem, it doesn't faze me,
but when he was seven and eight and doing it himself, it upset me.
"Why does he have to do that to himself?"
That was one of the hardest things. Why does he have to inject himself?
At the moment, we're sort of in control of their care
and we can do the best we can to keep them healthy.
What you worry about is, well, when they get to their teens,
what if they kick back against that and they're cooking and getting drunk
and all of that can play havoc with your diabetes.
So it's that thing of really hoping they're OK
once they have to go out in the world.
It's very easy to think we're doing the short-term things,
getting the glucose testing right and the insulin injections and that stuff.
But actually it's, what's clear is, how we deal with it, a chronic condition,
how do you ensure that somebody really feels quite motivated
and how do you maintain that motivation
over, in the individual's case, life long,
but certainly in the parents' case, over the next ten, 15 or 20 years?
And that's the real challenge.
Going from a child with diabetes to a teenager with diabetes
is, one, letting them have more control over their own diabetes.
When they're a child, it's mum or dad that's looking after the diabetes.
You don't want them to think that diabetes will stop them doing anything.
They can lead a healthy life and do anything.
There's always horrific times when you make an error, right...
- (laughs) - Like you give the injection
but hadn't done any air shots and it was a new phial of insulin
so you're not sure how much insulin they've got.
Obviously, you take action to make sure they're OK once that's happened.
But don't beat yourself up about it,
you're only human, you've got to do this stuff all the time.
As times goes on, you become the expert
and you will know, as you get used to diabetes,
what's going to work and what's not.
They go into phenomenal levels of detail, much more than you need to know
and they talk about it and you've no idea what they're talking about.
The insulin scheme we're on, which is basal bolus,
the bolus is for food, like NovoRapid,
and the basal is background to hold you down throughout the day,
so you don't go high.
They know so much about it
it's hard for them to explain it to somebody else.
Blood-sugar testing allows you to try balance the amount of insulin they have
with the amount of energy they use each day
and the amount of food that they eat.
So those three things sound quite simple
but when you're talking about an 18-month-old,
you're trying to predict when you give them an injection at 8 o'clock
how much running around they're going to do
before they get to their lunch.
So don't worry about doing lots of blood tests
because you need to see what's happening.
It may look terrible to start with,
there's so much to learn, you think you'll never do it. You will.
People do and they do the most amazing things.
Your life changes quite a lot when you have a child with diabetes
and there's a lot of stuff to do and it's quite stressful.
But it does sort of become normal and you do become used to it
and then you focus on the more important things in life.
It does get better and life gets easier and you'll get through this.
And my son'll say the same, that life...
You can be healthy with diabetes and you can live life to the full.