Coping with what other kids say

[SophiaW]

Jess is doing brilliantly with her pump and we can see so many benefits, on the whole she is very happy with it. But tonight we have had a few tears. I remember reading somewhere that getting the pump is great but many people go through a period of difficulty after about 6 weeks as it dawns on them that they're attached to it 24/7. Jess has been on the pump for 5 weeks this week.

She is happy wearing it most of the time as it is discreet and hardly noticeable under her clothing. However she has a swimming lesson at school once a week where the girls change in a group changing room. Some of the girls (it's a small handful of children who can be quite spiteful) have been speaking and whispering behind her back when they've seen the infusion site and tubing. She says they don't say much out aloud but she can hear whispers and giggles and looks in her direction. She doesn't have the problem for PE changing because they're not completely stripping off so the infusion site remains hidden (she has the cannula sited on her butt).

I'm not really sure how to handle this. I've asked Jess if she'd be happier changing in one of the single units or perhaps in a smaller group changing room with her two best friends. She said she'd prefer to be on her own in a single cubicle. I can speak to the teachers and get this arranged.

Jess says she doesn't want the teachers to speak to these girls as she feels embarrased about it. I've tried to reassure Jess that she should not feel embarrased, there's nothing wrong with wearing a pump. Sure it may be different to how the other girls are but she shouldn't feel embarrased about it. I said that these particular girls are the ones who should feel embarrased about their behaviour and insensitivity.

Is there anything else I can do or say to help her deal with children like this and keep her confidence going strong? Should I be taking the matter of these girls further even although Jess doesn't want me to? Will speaking to them make matters worse or should it be done to nip the problem in the bud so to speak?

 

[sugar2]

Hi Sophie,

I have been diabetic since i was 4...and on the pump since I was 37...so not really in Jess's situation, but I can relate!

I emmpathise with the....I am going to be on thsi for the rest of my life feeling...although, for me, having been diabetic so long...the thought of the rest of my life on a pump, was better than the rest of my life on injections.

SChool was differnt in the 80s...but some kids have always been cruel...I used to get...you are having injections,, you are going to die...you have hundreds of holes in you rskin,,watch out, she will leak blood everywhere etc etc. Whta helped me more than anything, was teh fact that I had a couple of very mature, and caring friends....who would speak up for me, when I was too embarrassed or upset to do it for myself...they would say things back to the "bullies, basically implying to them,like you have said to Jess, that they were the one with the problem. I wonder if it would be appropriate to talk to Jess;s friends, obviously with Jess, not in secret, and ask if they could give a little support. Even if they don't make comments back, having a rowdy, joleu conversation, and ignoring the trouble makers could help...no confrontation...just distraction? Obviously, Jess is intelligent, and I am not suggesting this as something that will distract her...but maybe, the others will just get used to it...and it easier to keep a brave face in front of your peers if you can be chatting about popstars etc. In y day ot was Paul Young...I feel very old!

Nw, I still get looks in teh changing room at the gym...and have had more conversations about diabetes since being on the pump, adults are often really interested...and want to know more, although some are embarrased to ask! It is different when you are grown up though!

Would it helo to wear a cannuala on her stomach on swimming days? I know with my little girl (4) anything to do with "bottoms" is deeply embarrasing? Justa thought.

 

[ams162]

oh poor jess it makes u break ur heart i could cry for her and i dont even know her, dylan has not met with this problem yet, his class mates have been curious and kind. he does have swimming lessons once a week but changes in a cubicle however he did have it above the waistband of his trunks the otherweek and one of the other mothers came over tome the next day and said her son had asked when they got home why dylan had a blow up valve on him i thought it was lovely that he had waited till getting home to ask his mum and not ask dylan himself.

i hope u get this resolved for jess i dont really knowwhat to advise its instinctive to say go in and try and talk with the teacher but to go against jess wishes im not sure

anna marie

 

[SophiaW]

Thanks Sugar and Anna Marie It's so nice to hear other people's thoughts on this. I feel so close to the situation that I can't think what is a non-emotional way to deal with it. Emotion takes over and that's not always the way to deal with things is it! I won't talk to the teachers yet but I will keep checking with Jess how things are going incase she changes her mind or things get worse.

Jess won't wear an infusion site on her tummy, she's always refused to inject there too because she's quite slim and afraid that it will hurt as she doens't have any fat on her tummy (I'd love a flat stomach like hers!). I could put the site on her upper thigh but then it will be visible when she's wearing her swimming costume so I think would be worse.

Jess' two best friends are very quiet and shy, quite the opposite of Jess who is very outgoing and bubbly. But there is another girl in her class who visits on weekends sometimes as she lives a little further up the road from us. She's lovely and often refers to herself and Jess' mum at school, she's one of the more mature girls at school. She already knows quite a bit about Jess' diabetes and how to treat a hypo etc. I might ask Jess if we can have a chat with her next time and see if it's okay to have her look out for Jess at swimming and keep her mind off these other girls.

Fortunately most of the kids at school are wonderful and are interested rather than be funny about her diabetes.

Thanks for all your support, it really helps to get through these sticky situations.

 

[Jen&Khaleb]

I've just had a recent time away at Camp Diabetes. Pumping is taking over injections here and many are going straight onto pumps from diagnosis. This has meant that many people now have no idea how to manage diabetes when the pump fails or have a pump free day. It might be worth talking to your educator about the ability to have pump free days and then if swimming is once a week you can just take it off and have a needles day. The parents that were asking the questions were having trouble pumping when they went to theme parks. They had to keep coming back to the locker every hour or so and hooking up the pump and bolusing. Apparently pumps don't handle the G force of rides. I'm sure the first few times you tried this it may seem a bit of a hassle but once mastered it would make diabetes much less intrusive and even more flexible. I can imagine there are many occassions in life that might call for taking off the pump for an extended period of time.

There were some teenagers at the camp that swapped between the pump and needles all the time! They used whatever suited their lifestyle at the time and still maintained really good control.

I know it would be great if she could keep the pump site, do swimming and all the girls just forget it is even there but that isn't generally how it goes down at school. Kids can be cruel. I remember my son coming home from school in tears because he had a large wart on his knee. The kids called it 'The Mother Ship' as it had a few smaller warts around it. I took him straight to the doctor and had them frozen off. My older son has also had some comments about Khaleb having Down syndrome. One 'friend' used the word retard in my home and has not been seen since.

I hope her swimming is going well. You never know when you might need to save yourself. I live in a town that was recently hit by flash flooding and a young boy (11) who couldn't swim was killed along with his mother when they suddenly found themselves surrounded by water. There were many other lives lost as well as property destruction.

 

[SophiaW]

Thanks Jen, the pump free day option is something to consider. However she loves the pump and doesn't want to go back to injections, not even for one day. We've talked a little more this morning and Jess has said that if she can change on her own in a private cubicle then she's happy with that arrangement. I guess as an adult we would have no hesitation to walk into a private changing room if we wanted to so why not let a child have the same choice. I'll speak with the staff after the half term holidays and get that arranged. I've been along as a parent helper to many of the swimming lessons and there's no reason that can't be done. The private cubicles are directly opposite the group changing rooms so it's not like she'll be left in a different location to change by herself. The staff wait directly outside waiting to help the girls get their swimming caps on after they've changed.

I've noticed that after our school's lesson the secondary girl's school has a swimming lesson. All the older girls change in their own private cubicle, some pair up with a friend but there's no group changing.

What also came out of our conversation this morning is that she feels like the only person with diabetes. No one else at her school has it. I told her that when she starts secondary school there will be others who have diabetes. I know the nurse said there are about 4 girls at the secondary school who have T1. I don't have diabetes, but sometimes I feel like I do because acting as a parent I take on some of the worries and responsibilities. It's so good for me to have this forum for support and to not feel alone in dealing with this. This morning an invite dropped through the letter box from our DSN who has arranged a meet up of the families of her patients. A teenage girl who uses a pump will be giving a short talk at the meeting. I asked Jess if she'd like to go along and she's very keen on the idea. So I'm hoping that by meeting other kids in the same situation it might help her emotionally to cope with all this. So far she's coped brilliantly but I can tell she's getting towards that age now where being different is becoming more of a problem.

 

[leggott]

Hi Spohia, Sorry to hear about this. it breaks my heart to think that a child having gone through so much all ready has to experience some cruel behaviour from other children. I suppose these other girls also pick on other kids too and I guess if it wasn't the pump, the'd find some other reason.

I think that for now you probably just need to leave things a while. it sounds like Jess is being very grown up about it and not rising to the bait. Hopefully if she can ignore the comments, these girls will get bored and stop this. If they don't and you feel it is getting to Jess, then at that point it might be worth getting involved.

I think Jess should stick with the pump and not let her life be dictated by others. It's clear she is loving the pump and I think by removing it during swimming may let the girls think they have won and may lead to Jess stopping wearing it completely.

leggott

 

[nicolaknight86]

Hi, your post broke my heart!
My little girl is 3 and were waiting for the funding for the pump, then she will be straight on it.
I see both sides but this really does constitute as a form of bullying and as I work in a school I really think it needs to be sorted sooner rather than later before they become worse. Kids can be cruel and in my experience will only get worse when they realise your daughter is 'letting them off with it'. Id suggest asking your daibetes nurse goes in school and does a training session with the whole class so they realise how important your daughters pump is. Although my daughter is only in nursery all her class know a little about her diabetes so they will grow up with her having it so hopefully she wont have this but my partner was t1 from 9 and was then bullied all through until he left school, which left him not looking after his daibetes at all and resenting having it, now they both have it he is fiercely protective of her and she really is his little princess!
Really hope you get this sorted

 

[SophiaW]

Thanks Leggott and Nicola for your support Nicola, I hope you get the pump soon for your little girl. It's made the world of difference to Jess' BG readings, they are so much more stable than they have ever been.

Jess' whole year group are very aware of her diabetes and how important her injections and now her pump is. Last year the class teacher covered the JDRF Type 1 School's Pack with them and they often ask questions about Jess diabetes, usually through interest and support. I often volunteer at school for various activities and so I have lots of the kids asking me questions. As for these particular girls I think this is just how they are. I don't think any more information would make any difference. I don't believe Jess is the only one who has had a problem with them either.

 

[donnellysdogs]

Sophia

Just reading all of this post from you and others helping and supporting has made me so sad and yet so delighted.

I feel so sad with children having to handle pumps and lifestyle issues nowadays, and yet seeing from the responses it makes me so delighted to see how children and parents manage to find there way around such issues to support their wonderful children.

It also showed me how scared we can be emotionally wise of doing the wrong thing, and boy I am so glad in reality that I am just having to manage my pump and not as a parent for children..

Your post has made me appreciate how difficult things can be for children, but how supportive the parents are. It has made me realise just how much I love this forum for the help and advice and experiences from other people that have lived with them.

I do hope that your daughter will find a happy medium soon in handling the issues around the pump and changing facilitys.

Best wishes..Sha

 

[jopar]

For a child seeing somebody with something stuck to there bottom is quite funny, just the way the kids are sadly they haven't quite learnt social rules of what is and isn't exceptable in certain situations..

Why don't you when move the infusion set so it's not on her bottom, say the stomach are for when she goes swimming, it probably stop the sniggers in there tracks...

A lot better than her going to another area to change, as this will make her stand out even more sadly, making it more of an issue, which wouldn't be good long term

 

[donnellysdogs]

From reading all of Sophias postings it reads that her daughter doesn't like to have sets in her tummy...she's not the only one -nor do I ....I always rotate mine between both of my legs and bum and only my tum when I have been to my massage sessions, as it is the only place clear of oil, bt like little Jess, I also don't like them in my tum either.

 

[iHs]

Hello Sophia

I do feel for your daughter at school at her age with a pump. In real life there are not that many children that have got pumps so your daughter is unfortunately going to be the centre of a lot of tittle tattle amongst other kids until they find something else to gossip about.

I think the best way round this situation is for Jess to get changed privately or for her to get the other kids who are gossiping to come and see the pump and look at the tube and infusion set (then while they are looking press a button on the pump so that it squirts a load of insulin in their moosh :lol: :lol: ), it would shut them up for sure. Seriously, once kids have had a good look at something I think you will find that Jess will no longer be the centre of their whispering and they will just get used to the idea of seeing Jess with an infusion set in

I would leave things be for the moment rather than make an issue of it at school as it might make things worse for Jess instead of better.

 

[jopar]

Jess has only been using the pump for 5 weeks, so a lot can be done to make her more comfortable about wearing the infusion set on her stomach, as it doesn't have to be smack bang in the middle, but can be located near the hip or if she's got enough fat layer above the actually hip, can be worn there...

The way I see this....

This small group of girls who are peers to Jess but not personally friends, so been removed from seeing diabetes in action i.e bg meters, insulin pens etc... diabetes to them is very much a mystery..

I assume that Jess has been sharing the same changing room with them for a while, when she got her pump 5 weeks ago they really didn't notice, as it's tuck under her clothing so Jess hadn't changed at all in their eyes... But when she turns up for swimming with the pump in tow, and there's a white thing stuck on her bum and a tube attached to it..

They are bound to be bemused by it, hence why they are snigger and whispering as they get used to seeing this oddity in their eyes, give it time then it will become normal sight to see...

Jess hiding in another room isn't a good idea, as it's separating her from her peers, which does little for either... Her peers won't learn about diabetes or except that a diabetic is a completely normal individual, her kit is part of normal life etc etc..

For Jess it won't be good for her in the long run, as it will install into, her that she abnormal she won't learn how to cope and to carry on with her life as normal... As at every problem faced she wil do a runner...

Actually the best thing in this situation, is to comfort Jess with that holding on in their by doing her normal stuff (getting changed for swimming has she always has done) ignoring their giggles/whispers then give a couple more weeks it will die down, as her infusion set will fade into an exceptable object etc etc not worth the mention..

Then have a word with her teacher, making her aware what is happening at the moment so that they can keep an eye, that yes it's naturally dieing down on it's own accord... If not then a rethink needs to be done, this could be explaining diabetes and insulin pump treatment within a lesson context etc..

This way Jess has learnt to cope a bit more with her diabetes, her pump and other people reaction, perceptions along side a tactic to tackle it...

For the girls, well they've learnt to except differences in individuals and except them as normal in a natural process..

 

[SophiaW]

You make a good point Jo. It's really hard for a child to stick it through those weeks though. I can see how the whispers will die down as the novelty wears off but it's difficult for a child to see an end to it. I'm going to give it all some thought over the holidays before I make any decisions, but whatever decision I make Jess will need to be "on board" with it. I will explain this idea to Jess though and see if she feels she can stick it out. As for the tummy being used as a site, I'm hoping that if she sees some other kids (at the get together that our DSN is arranging) with the infusion set sited on their tummies she may consider trying it.

On a more positive note, Jess had another friend from school around yesterday, she lives a few doors away from us. They had a snack and Jess got our her pump to bolus. Her friend asked to have a closer look and commented "cool!". Jess got a big smile and looked dead chuffed that her friend thought her pump was cool.

 

[leggott]

That's great Spohia. I bet that was just the tonic that you and your daughter needed.

 

[jacquiel]

Ignore this if you think it is stupid, but -


Just a thought - as she is bubbly and outgoing, can she be brash about it and confront them in a jokey but confident way? Or maybe ask them why they are staring at her bum? Or tell them she it's the source of her superpower? etc - something so that she doesnt seem embarrassed, and maybe they will be embarrassed by her actually being upfront about it, and see it as no big deal?

Just thinking this because a friends daughter swims and has half an arm - so obviously everyone that doesnt know her well will snigger and point and talk behind her back.
She is very upfront, and for example when she started secondary was scared about the comments etc from other kids - she wore the prosthetic arm for a few days, then 'accidentally' made it fall off in front of a group of sassy kids - and the shock, and waving it round etc broke the ice and they just thought she was funny (she is confident generally)

 

[SophiaW]

hmmm, I'm not sure she's strong enough to do that. Although she's outgoing and bubbly she is quite sensitive too and can take what other people say to heart. I think if the situation involved a friend and she was to speak up for a friend it would be easy for her, but as it directly involves her it's more difficult for her.

 

[ams162]

hi again
dylan hated having his site in his belly too but we have persuaded him to try it as we need to rotate a bit more and altho he has his favourite spots he will have it in his belly when i say we need to give the usual spots a rest however we dont put it in the stomach for swimming days as he has to pull himself out of the pool and its a fair way above the water so he drags himself out using his stomach, a mother mentioned the other day that her child thought dylan had an inflatable blow hole in him which made me chuckle as it does look similar but he never said a word to dylan so he was thoughtful enough to keep his thoughts to himself

anna marie