The trials of a T1 school child

[Sally71]

My daughter manages her D so well, but I do feel for her sometimes!

We were due to do pump refill at tea time yesterday, so at breakfast time I checked how much insulin was left in the pump. 26 units, low cartridge alarm goes off at 20, so I sent her off to school with a warning that depending on her lunch time blood test result, she might get the alarm going off some time in the afternoon. But not to worry if so as what's left will easily last the rest of the day.

Well we have been having a few too many readings in the teens over the last few days, I don't know if it's hormone related or because the weather is getting colder, but it looks like I need to do the next round of basal adjustments
So of course she tested 13 at lunch time and needed a correction, so then the low cartridge alarm went off not long after the end of lunch break... Right in the middle of assembly 😱

This is probably my daughter's worst nightmare! No staff heard it, but a lot of children did, her immediate class mates know about her pump but nobody else does, and lots of year 3 and year 5 children were turning round and looking. Now if it was me I'd have just turned it off quickly, apologised if anyone was glaring at me and not really cared much about what anyone else thought. Daughter, however, didn't want people to know the noise was coming from her, she thought she'd get loads of people telling tales about her having a phone. Clearly it isn't a phone so she wouldn't get into trouble, but anything which draws attention to her being "different" is excruciatingly embarrassing to an 8 year old. So she just sat there and let it carry on bleeping, feigning surprise and looking around as if to see where the noise was coming from like everyone else! The two friends sitting next to her realised what was going on but luckily didn't say anything, and she turned the alarm off as soon as they got out of the assembly hall.

Bless her, I think she coped with it as well as she could... I wish I could have the D instead of her though

This has got me thinking about exams in the future (yes I know the important ones are years away yet, but time flies...) I guess we'll have to try to wangle things so that pump refills don't fall on the same days as exams!

On another note... Daughter's class have been learning about the digestive system in science. She knows a lot about that already so found it all a bit boring. One of her friends asked her what a pancreas does, and she replied "it goes wrong!"

I don't know whether to laugh or cry about that one!

 

[Northerner]

Ah, bless her! Hopefully, by the time exams come around she will be more blasé about people's reactions - who knows, she may not even need a pump then because the Cure will have come! 🙂 Before I was diagnosed I probably couldn't have told you what a pancreas does! Now, I would have to agree with her! 😱 😉

 

[novorapidboi26]

what pump is she on.......?

I use Medtronic and I get a 'low reservoir' alarm too, but its only a short sequence of beeps then its stops for 5 minutes........

Maybe there is a setting that can help....

 

[Sally71]

She's on the Accu Chek Combo, so unfortunately the alarms don't shut up until you push buttons! Whether you can change when it goes off though I don't know, that might be worth investigation. E.g. Set it to alarm at 10 units instead of 20. I might look into that, thanks!

Northerner I sooooo want my daughter to be able to ignore what other people think but that's going to take some time . I keep telling her that she's done nothing wrong and has got nothing to be embarrassed about, but I think that's easy for me to say, and she finds it really difficult at the moment. I can only hope that over time she will start to find it easier!

 

[KookyCat]

Sally, I'd have been the same as her when I was her age, absolutely mortified. I hated being centre of attention and just preferred to blend in. Sadly I was 5'9 at 9' 5'11 at 10 and 6ft before I left primary school. So blending wasn't an option. I know my Mum and Dad desperately wanted me to just shrug it off, but I couldn't. The thing is though, as difficult as I found it, it's a really important part of who I am, and honestly I'm quite proud of who I am today (I hope that doesn't sound as hideous as it does in my head). I know it's not the same thing but is it all about being different, and as much as I wanted to not care, I very much did. it just clicked for me when I was about 14, and the girl who wanted to blend got pink hair, and some age inappropriate clothing (a whole other story). I just wanted you to know we shy girls just need a bit more time to get comfortable, but we get there in the end 🙂

 

[Hanmillmum]

Sorry to hear about your daughter and the pump alarm 😱 poor lass!


On the Medtronic pump you can adjust the low reservoir to what suits in terms of units or time. (I've put in 10u for my daughter's) Also the alarm alert type can be altered from beeps to vibrate. Not sure if the combo has these features but may be worth a look and see?

Hope she's recovered from being mortified!! 🙂🙂

 

[HOBIE]

Hi Sally its serous stuff for kids at school ! Other kids can be cruel. I know when I was at school I wouldn't let any kid run as fast as me 😱 I don't know if I was proving it to myself or them . That was in 60/70s. Hope she is ok 🙂

 

[Redkite]

Oh dear Sally, what a shame she feels self conscious about it at such an early age. My son is happy to wear his pump visibly (in a Spibelt with the tubing feeding back between two buttons on his shirt). He doesn't care who sees him bolusing etc., but he does get embarrassed if alarms go off in a lesson, and tends to silence them without bothering to look what the problem is. With the Veo (when he's also wearing a sensor) it gives quite useful predictor alarms, of 3 rising notes for a high BG warning, and 3 falling notes for a low BG warning, and he's supposed to do a fingerprick to confirm what's going on and take action.

Re exams, most secondaries have arrangements in place for pupils with extra needs, and I think my son will have the option of sitting his exams in a separate room from the main hall, so if his pump alarms or he has a hypo, the invigilator can stop the clock while he attends to his diabetes. It comes under the umbrella of "reasonable adjustments". Some D pupils prefer to be in the main hall with all the others, but then if they need time out for a hypo to be added on at the end, they will be disrupted by everyone else scraping back their chairs and walking out at the official finish time. Anyway, you've plenty of time to worry about that! It's a bit nearer for us 😱🙂

 

[Sally71]

Thank you all for your kind replies! She got over the incident quickly enough, and I know I can turn the volume down on the alarm next time, but that won't help her learn to cope with it. I just have to hope that one day she will learn how not to mind what other people think and be proud of who she is, I just wish I knew what to say to her to make it a bit easier in the meantime! It is a bit of an awkward age for things like that!

On top of that, there are some new dinner ladies in the junior school, and the first week back she had to argue her way into the dinner hall every day (you'd think that by the third or fourth day it might have occurred to the lady that she'd better ask someone about it!). I had a word with the supervisor about that, she apologised for forgetting to tell the new ladies about my daughter and agreed to make her an early lunch pass that says she must be allowed in"for medical reasons". Which is great but unfortunately she hasn't had time to make the pass yet. She said she didn't know if daughter would want a pass, knowing how shy she is about it. Well she'd rather just wave a card than have to stand there talking about it!

Then to add even more insult to injury she suddenly had a spate of her friends not wanting to accompany her in for dinner. All through years 2 and 3 she picked a friend to go into lunch with her and the system worked very well. Now in year 4 she suddenly started getting them all saying that they want to go in with someone else today, can't she pick another friend! I really didn't know what to advise about that one so she decided to tell her teacher. Teacher had a word with the whole class, daughter can't remember exactly what was said but it included something like "you're making her feel like she has got no friends any more". Since then that situation seems to be resolved so that's good. But it's a bit of a bummer that all the little problems seem to be happening at once, and to her they are big mountains. So we're getting a bit of an "I don't want to be diabetic any more " phase at the moment

She seems to bounce back quickly when things get sorted, which is one good thing. I just wish I could help her not to be embarrassed about it at the time!

KookyCat - 6 foot tall at primary school? 😱😱😱
How tall are you now?!

 

[Sally71]

Update

Well we had lots of tears over half term, don't want to be different any more, you don't understand how horribly embarrassing it is etc etc

So met up with class teacher on Monday, she said she is fairly certain that other children don't stare at my daughter when she's doing her test and bolus, but has arranged for her to use the school medical room to do so. She has also agreed to arrange things so that daughter always sits on the end of a line in assembly so that if she does need to attend to her pump or anything else she can just get up and leave the room without causing a disturbance. Daughter seems happy with this plan. It sounds as if nobody is being deliberately unkind to her, but teacher said if anyone does start she must report it immediately. So far so good!

Have also been in touch with DSN about all of this, she can arrange counselling if necessary. She said that she can go into school and do a special assembly with them, do things like taking some toy food in and see who can guess what contains carbs, and debunking all the myths that tend to surround diabetes. Or she could just talk to some of daughter's friends and make her feel special. I didn't think daughter would like all this fuss and attention at all, but as luck would have it we had clinic this week so it was on the agenda to be discussed. DSN explained it all to daughter and asked her if she'd like that to happen or if she'd like to think about it for a while. Daughter got very excited and said that she'd love that, can she join in and help (as long as she can persuade a friend to go up there too to help her feel more confident), can DSN bring a pump to show so that she doesn't have to take hers off etc etc. She said that if everybody knows what her pump is for she won't mind when the alarm goes off again!

I am totally gobsmacked at this! DSN has obviously seen it all a thousand times before though, and says that generally children DO want everybody to know about their D, because then they feel safe; they just don't want to be the one going round doing the telling. Daughter has not stopped talking about it since, and says she can't wait for her special assembly!

DSN is hopefully going to ring the school today. It will of course take a few weeks to organise, headmaster will have to authorise it and then they will have to find a mutually convenient date etc. but I'm hoping that it might happen before Christmas. I'm also hoping that it will work and give daughter the extra confidence she needs, that would be amazing!

Please keep everything crossed for us 🙂

 

[Redkite]

That's brilliant Sally, great support from both the school and the DSN. 🙂

 

[KookyCat]

Brilliant, sounds like a fantastic plan. I really hope she enjoys it and it helps her feel more comfortable

 

[Northerner]

Terrific news! So pleased she is up for it! 🙂 I hope it happens sooner rather than later, and that everything goes well 🙂

 

[Sally71]

Another update!

Special assembly finally happened in January, and it sounds like all went to plan. Daughter says she feels much happier at school now and won't mind so much if any pump alarms go off at awkward moments. She's had one or two children asking her about her diabetes, but she's more comfortable talking about it now and nobody has been unkind about it so hopefully it has achieved what we wanted it to 🙂

Now we have a problem with one of the dinner ladies, who has decided that if my daughter's chosen friend for the day has a packed lunch she won't allow them to sit together. Why? Because my daughter always has school dinners, and in the hall some tables are for school dinner children and some are for packed lunches, and we couldn't possibly have one child sitting on the wrong table now could we, it's against the rules. This same person didn't even want to allow my daughter to jump the queue, but was soon told that it's for medical reasons, it's all documented and you'd be in serious trouble if you ignore that. So she reluctantly lets her in now but still wants to cause trouble! I think she thinks that if daughter was able to come in with the rest of the class she would only be allowed to sit with other school dinner children, so why should she be allowed to pick sandwich children now. Unfortunately all her best friends happen to be packed lunches, and as she can only have one friend with her each lunch time then why shouldn't she be allowed to pick whoever she likes!

All the other dinner ladies take the common sense approach, I.e. they don't care who my daughter is with or where they sit. And what is the point of her being allowed to pick a friend if they can't sit together, and why on earth should she be forced to sit on her own just because she's got a complicated medical condition that she didn't ask for! This particular dinner lady doesn't see it that way though, she thinks she's in charge (she isn't) and seems to take great joy in throwing her (not inconsiderable) weight around over the most trivial of matters 😡

All the class teachers, other dinner ladies including the supervisor, and in fact pretty much all the other school staff we've had to deal with have been brilliant at understanding why we have to make certain allowances for my daughter at meal times, and have even gone to extra lengths to make her life a bit easier when she's finding it difficult. There always has to be one idiot that spoils it though doesn't there 😡 I could do with Pumper Sue to come and sort her out!

Class teacher has been told about this and says she will try and speak to this person and the supervisor together. So hopefully this problem will be sorted soon, but it's annoying that we should have to deal with stupid things like this which are causing my daughter distress for no reason!

Well I feel better now I've got that off my chest, if anyone has bothered to read this far thank you for sticking with it 🙂

 

[Northerner]

Stupid woman! 😡 I hope she gets told to toe the line in no uncertain terms. I doubt she will ever like it, but she works in a school with small children - she ought to learn to put them first, particularly if they have problems that I bet she would have great difficulty dealing with herself. Sorry your little one is in the middle of this pointless and unnecessary situation!

 

[Robin]

I have come across some lovely dinner ladies, BUT, there always seems to be one....My son (who is now 25) still remembers the day 'that' dinner lady caught him ( aged five) eating a chip with his fingers. She firmly put his knife into his right hand and his fork into his left and stood over him while he struggled to cut them up. He was too scared either to tell her he was left handed, or swap hands while she was looking on, and twenty years later he still uses his cutlery like a right hander!

 

[Northerner]

I have come across some lovely dinner ladies, BUT, there always seems to be one....My son (who is now 25) still remembers the day 'that' dinner lady caught him ( aged five) eating a chip with his fingers. She firmly put his knife into his right hand and his fork into his left and stood over him while he struggled to cut them up. He was too scared either to tell her he was left handed, or swap hands while she was looking on, and twenty years later he still uses his cutlery like a right hander!

I've always used my cutlery right-handed - the only thing I can't use is a fork and a spoon, as I can't use a spoon properly with my right hand 🙂

 

[KookyCat]

Well I'm glad the assembly went well and I hope bully lady (because that's what it is) is very firmly put in her place. I have never and will never understand people who enjoy wielding power to the detriment of others. Grr 😡

 

[Sally71]

Senior dinner lady spoke to my daughter today and told her that she can pick who she likes at dinner time and don't take any notice of anyone who tells her otherwise. So I presume bully lady has been told!

Yes KK she is a bully, unfortunately she's one of those people who thinks she's right and everybody else is wrong, even if you've told her 100 times that she isn't right she still won't believe it. She thinks she should be in charge because she's been there the longest but no sane person would ever put her in charge, she'd run the place like a concentration camp. Not surprisingly there isn't a single person in the school (child or adult) who likes her. Unfortunately she hasn't yet done anything bad enough to be sacked

So it remains to be seen how long it will last before she finds some other way to upset someone, but hopefully for the time being the latest problem is resolved. Such a shame my daughter has to put up with this rubbish though, especially while she's still a child!

 

[Northerner]

Good to hear her edict has been quashed! 🙂 Kharma will come back to haunt her... 🙂 Maybe she'll be reincarnated as a T1 diabetic? 😱