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Parent to T1 Daughter - dealing with others reactions

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K

KLSingleton

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi Everyone,

My 10 year old daughter was diagnosed with T1 3 weeks ago and is doing fantastically, doing all her own tests and injections and is making us very proud. She’s back in school and to her beloved dance classes and so far have had nothing but love and support.

However today at one of her dance classes she was doing her test and injection before her lunch (as she’s there for several hours) and was doing it discretely in the seating hall where everyone waits/has food. Her specialist team have advised her to do it wherever she is and feel confident doing it out and about instead of hiding away or going to a toilet etc to do it in, and I noticed one of the mums pulling horrible faces as she did it.

I gathered she didn’t like needles (fair enough because who does?!) but obviously it needs to be done! Luckily my daughter didn’t see as I’m sure it would have upset her or made her self conscious about doing it around people, which we don’t want her to feel like.

I didn’t say anything at the time as I was next to my daughter and as she hadn’t seen I didn’t want to draw attention to it and make her self conscious but it occurred to me today for the first time (considering it is the first negative reaction she’s had) that this is perhaps something that will happen again in future, although hopefully not often, and I just wondered how other parents deal with it?

My instinct obviously is to want to say something not too polite to someone reacting like that, but equally don’t want to upset my daughter or make the situation worse!

Thank you in advance
 
I am so so sorry you have had to witness this idiotic reaction @KLSingleton - as you say, thank goodness your daughter was spared noticing in the early months.

So good to hear that her team have said she should be confident to look after herself wherever she is. This is exactly the right approach IMO.

I’ve been playing at being my pancreas for over 25 years and I can honestly say I have never noticed anyone pulling a face when I’ve been doing the necessary at tables or wherever when eating out. The only time I have felt in the slightest bit self-conscious was squashed in a busy train, next to a stranger and wanting to eat my tea. I didn’t excuse myself I just cracked on and they didn’t notice at all!

Hopefully it is a very long time before your daughter comes across another inconsiderate fool.

The confidence and skills you are teaching in the meantime will stand her in good stead.
 
Oh... while I remember, you might like to check out ‘Digibete’ which is a brilliant set of helpful videos from a great team of people in Leeds.

You might also find some helpful links and resources via www.t1resources.uk which allows you to filter and search by keyword or topic.
 
I think you could have had a word with mum - and ask her, kindly - how she would react were it her daughter and YOU had pulled an 'Ugh!' face at her child, and mum had seen you? Point out that your girl simply won't be able to stop doing that 'for obvious reasons' so it would be far easier if the mum changed her face instead, and instead changed it to sympathetic smile!

Or merely start a random conversation about whether she knows how much more physical effort it is to frown instead of smile? LOL

Personally only once or twice in my life, like Mike though - on noticing such horror, I've taken immense pleasure in eg waving the pen (making sure that the needle is dripping) aloft in the air in front of me and asking my husband if he saw what I did with the lid!
 
Unfortunately it's easy for us adults to say that we wouldn't let it bother us, for a child of that age (mine is now 11) it's major embarrassment to end all embarrassment. We have been very fortunate and not really encountered any such reactions from adults, they either don't notice or are genuinely interested. So far have only met one or two know-alls who think they know better than me, which is a bit annoying, but thankfully so far not common (fingers crossed!).

My daughter has always struggled with talking about her diabetes, even to people who already know about it, and sadly I don't really know how to help her :(. E.g. A lad at school pointed at her pump and said he was going to tell tales on her for having a phone at school. I don't think he did tell anyone, and of course it isn't a phone (and any adult with a brain can see immediately that it's a medical device, even if they don't already know her) and so she wouldn't have got into trouble anyway, but she came home very upset about that. I said she should have either said "try and ring your mum on it then and let's see how far you get" or "go and tell then, I won't get into trouble because it isn't a phone", but she was quaking in her boots st the thought of giving cheeky responses like that!

My daughter is slowly starting to get a bit braver, I'm hoping it will just come with age, but I still have to fight battles for her sometimes. E.g. She is now at secondary school, and started a new topic in Technolgy recently. They are using the classroom where they were demonstrating very strong magnets at the open evening, she knows that strong magnetism could damage her pump, and rather than just talking to the teacher about what they would be doing (and she knows him quite well because he used to be her form tutor) she insisted that I write a letter explaining the situation. Which I don't mind doing st the moment, but I'm hoping as she gets older that she'll be able to manage some of these things herself.

In your situation what I would do probably depends on how well I knew the other mum, but maybe you could ask her what her problem is? If she says that needles are disgusting, well then there are various responses including "well you don't have to look if you don't want to" and "it's all legal, prescribed medication, if she doesn't take it she'll die, why should she hide away when she hasn't done anything wrong? Perhaps you'd like me to let her die just so that you feel more comfortable? How would you like it if your child had an incurable medical condition and other people stared/pulled faces at them?" Etc etc. And the needles on insulin pens are so tiny that I don't know how anyone can see them unless they are sitting next to the person using them!

One of the funniest ones I had just after my daughter was diagnosed was from a friend, who watched me injecting my daughter (she was only 6 at the time) and my friend said "ooh I don't think I could do that!" Ummm... Given the alternative, I think you'd find that you could!!

Oh and don't ever let anyone try to tell you that she's only got diabetes because she must have eaten too many sweets! Type 1 is autoimmune and completely unpreventable and absolutely nothing to do with diet and exercise, and if people don't believe you tell them to google it! Or give them the phone number of your DSN so that they can ask an expert!

My daughter has just wandered into the room and says that she has had other mums staring at her when she's been testing or something, just because she's doing something "different", I thought maybe it's just curiosity but she said sometimes it's followed by "let's go..." and their child being shepherded away :(. Daughter says in these cases she just stares back or smiles and waves! :D I'm dead proud of her for that, she says it's easier when she doesn't know them and is unlikely ever to see them again, a bit harder if it's one of her friends' mums. I've always tried to teach her that if someone asks her a polite question about what she's doing then they deserve a polite answer (although some of her "polite" answers sound a bit rude to me, because she finds it so difficult to talk about she'll just blurt out "mind your own business" or something 😱), but anyone who can't even be bothered to ask deserves everything they get!
 
I have been T1 for 52yrs & please tell your Daughter well done ! If I was there that so called mother would have gotten a hard time. Some people are so far up there own behinds. Your daughter is a much much better person 😎😉
 
I have witnessed another type 1 sat on the loo in a pub with her injection. I nearly lost it at this. Nobody should have to inject in the toilet. I asked her why and she said that her family do not like it! That's right her family cannot stand the thing she has to do to be alive.

However in relation to that parent, most things like this come from people not understanding Some people don't like what they dont know, thats all it is, it's stupid but true. So I would have asked her if she knew what was happening, and asked if she wanted a brief explanation.

Hopefully it doesn't happen again!
 
Sorry that the mum reacted stupidly when you daughter was sorting out her insulin, but glad your daughter did not see the face the mum pulled. I like Phoebes idea of speaking to the mum and asking if she would like an explanation of what is happening.

I wonder whether it would be useful to practice a standard response that your daughter could use in such situations. That way she won’t need to think too much about how to react and can just give her standard answer. I did this when I used to get absolutely infuriated by people telling me I had ‘long holidays’ as a teacher. It saved me getting wound up and I just explained to them where they could register for training if they thought it was such a cushy job.
 
I think it is worth speaking to anyone who reacts like that, perhaps not immediately while you're feeling hurt and angry, but next time you see them, if you can.

I'm just thinking from the other perspective from everyone else because I am incredibly needle-phobic - if I see a needle going into anyone I will pass out, and I can only inject myself because I have covered needles so I don't have to see them. I probably wouldn't pull faces if I saw someone injecting, but I would look away, maybe cover my face with my hands, maybe even scream! - and that might look rude, but it would be an involuntary reaction, not that I meant to be rude, just that medical things are my worst nightmare and absolutely terrify me.

So yes, she may have been being rude, she may not understand, but on the other hand she may have been terrified and unable to control her reaction. If someone's needle-phobic the thing to do is not to give them a hard time for something they can't help any more than your daughter can help being diabetic, but just arrange with them that you'll give them a bit of warning ("look away now") if they're nearby when she's injecting, without making a big thing of it.

Of course it may be that she's not needle-phobic, just ignorant and rude - but please do give her and others like her the benefit of the doubt and have a friendly word with them if you can.
 
PS I should have said - welcome to the forum, and well done to your daughter for taking it all in her stride, sounds like she's doing brilliantly 🙂
 
Juliet is right, we cannot help what we are scared of. I am scared of clowns. Even typing that makes me feel ill, and my heart race. They make me go green and I could throw up. I can't help it. It know its beyond silly but its just one of those things.

Agree that if you can help your daughter with the right approach now it will help her be calmer and the bigger person when it happens to her.
 
I recon people don't have to like it. They just shouldn't be a d£$%£ head about it. It's something that your daughter needs to do.
 
Your daughter sounds as though she is doing brilliantly. Well done her and well done to you, too, for not being fazed and encouraging her back to dancing.

For me, the woman’s look might have meant ‘I am disgusted,’ but it might have meant ‘I’m finding that difficult to look at,’ or even ‘crikey. How strong does SHE have to be!’ Perhaps there’s way to ‘say something’ that gives people more infortmation without making them feel uncomfortable.

I dunno...... ‘Do you find that hard to watch? Yeah, I used to find it really hard to watch. But you know, she’s doing so well with it. We really value how comfortable she is to give her injections anywhere now, when she needs them......’.
 
I know she can do almost anything 😉 ! Well done from all the members 😎
 
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