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The children have been dealing with ‘school issues’ the last couple of days — one positive, one negative. At M’s school, one boy said terrible things and behaved terribly — for two days — before the school caught up with him. Things about people with diabetes being ‘spastic’ and having no legs. He drew pictures, and taunted M. Needless to say, despite stay off the subject advice from us and from a teacher, by the second day of this, she flipped. It’s all been dealt with… but she feels these things deeply. She wishes more people understood. She wishes she didn’t always have to be in the position of explaining what diabetes is, the distinction between type 1 and type 2, how hard it is to manage, and how she worries about her brother…

It’s a bit much for a ten year old really.

By contrast, yesterday at school E’s physics teacher completely silenced similar taunting. This is a fairly common occurrence which E seems to weather well: boys tease him quite a bit about being diabetic, make fun of his pancreas, say hey he can’t have juice where’s my juice, etc. The distinction I guess between M and E”s situations are that in E’s case, the boys kind of know what’s going on. At M’s school, they are speaking from complete ignorance, and are therefore near bullying.

Anyway. Yesterday E had a hypo in physics, reached for juice. One boy said hey sir he can’t have that! To which the teacher responded yes he can, he’s diabetic. The same boy then said ha ha let’s all laugh at him because he’s diabetic. And the teacher, totally deadpan, said I don’t think that’s funny at all. My daughter is diabetic. I wouldn’t want her to go through what you’re doing to E, and I wouldn’t want E to go through what she does when she’s low.

Apparently the class just kind of froze; the whole atmosphere changed. The teacher is a favourite of E’s anyway. Turns out his (grown up) daughter was diagnosed just a few weeks ago. E came home feeling that someone understood.

That’s all it takes.

***

M and I talked alot yesterday about how when something like a diagnosis of diabetes happens in your family — it could be anything that marks out one of you as ‘different’ — people automatically read it as ‘not normal’. In fact, you yourself, until you get used to it, read it as ‘not normal’. And the difference weighs so heavily. You feel out of the stream of life, isolated, cast off. Difference of any sort is so very bulky to manage, trying to figure out what to do with it in your life.

Last night M said that ever since E’s diagnosis she’s been working hard to try not to pigeonhole people. She said that she used to be frightened of how different people looked in hospital, or on the street, in a shop. She used to be afraid of difference.

Perhaps we all are at first. But it’s not so difficult to change this. It’s not so difficult to expand our notions of what is ‘normal’. In truth, ‘normal’ can hold everything, every difference.

Our job I guess is to keep forcing people to expand, to open up. To educate. To push for acceptance at the deepest level. To keep people from turning away.

It’s not easy. But it needs doing badly. For all our children and their futures, whatever they may hold.

But we don’t. After thinking the high numbers of the last post were set probs etc, here we are on the third day since the last change and ALL IS WELL. A relief. Stable ish numbers. A night’s sleep….

And lovely Cleo has passed the worst of being on heat. After two nights locked in the bathroom she’s to all of our great reliefs a bit more settled. Phew! No more earplugs, and a bit happier a cat….

Finally, exams: I phoned the school and they suggested 10% extra time to account for E’s lack of concentration. Which he has done.

It’s good to get in the habit of being obvious and up front about all this: hypo or hyper, he can lose at least 15 mins of a test to treating it. Now, he’s a VERY bright boy. He would do ok no matter what. We know this. The school know this.

But he never complains. He gets on with things. He thrives and excels. So when he says he thinks his performance is affected by his diabetes, the school listens. They want to set up similar formal provisions for him for GCSEs. Just to give him the best of all possible worlds.

They believe in him and trust him. I was quite choked up on the phone, hearing how much they thought of him. In his RS public exam the next day (part of a GCSE) his numbers were fine. But arrangements had been made for him to sit close to the door. All of the invigilators knew the situation. He came home saying he felt so much better now that nothing was unknown. Before he had gone into every exam explaining…. Uncomplaining and necessary, but hard work I’m guessing before an exam.

Anyway. For the first time I feel, tentatively, that the school is beginning to understand….

***

Morning at the hut.

– Posted using BlogPress from my iPhone

1) M’s school did speak to the two year groups as promised. M reports it was handled well: an analogy with a key was used apparently, such that the key is the workings of the pancreas. In type 2 the key is a bit broken, not working so well, but a bit. In type 1 there is no key. Somehow this was used to illustrate how the types of diabetes were completely different, and most especially that type 1 is not something you can catch, or something that is the person’s fault, or anything. M did not feel on the spot. And the ‘friends’ who had teased her just the day before said nothing, even though she was sitting next to one. 

It’s interesting, isn’t it, how quiet a bully goes when shown to be wrong?

So all in all, satisfactory outcome! M is infinitely happier now that the ‘truth is out’, and we’re pleased with the school, will write a note saying so.

2) We have yet to try the Bayer Contour USB. Things have been too frantic. We need a bit of head space. And E is, as I’ve said, always slightly resistant to another unfamiliar thing when he’s full swing into his life. And who can blame him? May well be Easter break now….

3) E received a Distinction for his Grade 7 piano exam! Dig it. Barely 14 years old. Absolutely brilliant news.

4) M won a poetry reading competition on the same day. The girl understands it.

5) And I have been given a mini-residency at the Little Blue Hut on Tankerton beach. In which I will sit and write, and walk and think, for three days a week over six weeks, starting 21 April! I am so excited about this I could pop, seriously…It seems so out of reach at the moment to be able to do anything like that — but hey, it will happen. I will finish teaching next week, take a break during which I do my marking, and return to write. To write! To think! To just BE. Incredible. Watch this space.

1) Never happens. We know this. You know this. We plug on though. After 10 days/2 weeks of strangely low numbers, we finally lowered insulin across the board. As said. And things a little too high. Tweaked. Things still a little too high. Then, yesterday, things just TOO HIGH: 14mmols +. Eek. Went straight onto 120% temp basal, to get more insulin in. By 10.30pm had crashed into a bad feeling hypo (worse of course by virtue of having been a little high for a few days). Another panicky one. Yuck. Removed temp. At 2am was 4.9 mmols. Woke on 4.6 mmols. That’s better. Back to no temp.

Sigh. We’ll see what today brings.

2) Two days ago there was a talk on ‘healthy eating’ at daughter M’s school. During which diabetes was mentioned as a consequence of not eating well.

Oh dear. M then finds herself, not for the first time, defending her brother’s basic health in the face of her peers over the lunch table, who could add to their usual your brother can’t have sweets/ate too many sweets/must be fat, the cry of but teacher said so.

So no one believed her. And she was so cross she was stomping her foot about it when she got home.

So. I went in yesterday and chatted to form teacher. Was, rather incredibly, rung by the school nurse later in the day. Yes she said we will address this. Distinction not made clear and not good for children, not good for M.

Could have knocked me over with a feather, but oh well.

The two year groups who were originally spoken to will be kept back after assembly this morning, and things clarified. Upon arrival at school M was offered the chance to not sit in with them, or to sit in. She chose to sit in.

She is fearful that there will be too much M’s brother, M’s sensitivity etc for her liking and everyone will know it’s about her…

But I tell her, we tell her, that getting some things right are worth it. She feels so strongly about it, so fiercely proud of her brother and so deeply understands that him developing diabetes is just PLAIN BAD LUCK.

She yelled this in the car yesterday: it’s just plain bad luck!

If everyone knows it’s her doing — so what? They will also know that they were wrong. She just needs to be brave. And she’s very capable of that, every bit as brave and strong as the brother she loves so much.

Setting sail

In November 2008 my 12 year old son was diagnosed with type 1 diabetes. The effect of this event on me -- and on our nuclear family -- was like being thrown overboard and watching the ship leave.

'Dealing with type 1' in the family has morphed into another sort of 'dealing' -- a wholesale resituating of parenting, of family dynamics...of life.

At my son's diagnosis I could not to locate a record of what living with a type 1 child in the family is like. I could not see myself or our family anywhere. I longed for a starting point, a resource and a sense of the future. Being a writer, my instinct is to write it. This space, I hope, is a start.

Blood Sugar Ranges (UK)

<4 mmols = low or hypo, life-threatening if untreated
4-8 mmols = within target range
8-13 mmols = high but not usually dangerous
14+ mmols = very high, or hyper, life-threatening if untreated

Bubbles

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Distance Travelled

Disclaimer

I am not a medical professional. Any view expressed here is my opinion, gleaned from experience, anecdote or available research.