annoyed!

[bev]

Hi all!

I am annoyed with some of Alex's friends (actually their mums) - he went swimming to day with his dad and sister and all of his 'friends' were at the swimming baths - and they hadnt even invited him - i think its because of his diabetes because before his diagnosis he was 'one of the crowd' but since diagnosis he has been left out of parties and all sorts of things - it makes me so angry - all the mums have to do is ask me and i would tell them how to treat a hypo - or even be in the background as i realise that lots of people are scared of diabetes etc..
I probably wouldnt have let him go yet anyway as his levels go crazy with exercise - so a bit dangerous - it just makes me so sad that he is already being treated differently! Has this sort of thing happened to any of you and what did you do to overcome it? Bev

 

[brightbaby]

Sorry Bev about hearing about Alex

I am having the same issue with some of my so called friends which is even worse considering they are supposed to be adults. It was supposed to be a joint birthday night out last night for me and two of my friends but they wouldnt allow plans to be changed so that I could enjoy myself. It was supposed to be in Glasgow but as I work in Glasgow and live In Kilmarnock didnt think it such a good idea to be out in Glasgow since still but still signed off work and what if iy boss had seen me.

Anyway people are just ignorant about what they dont know, but I know exactly where you are coming from

Allyx

 

[kojack]

Hi Bev and Ally

Sadly diabetes hypos are the things stressed in the media and in TV dramas. I think people subconsciously relate to this and are frightened (similar reaction to epilepsy)

The best education comes from us if they give us a chance to talk with them.

So sorry that you have both directly or indirectly suffered; the social backlash is often worse than the medical problem.
I don't blame you for not going into Glasgow Ally. There is such a crackdown on benefit fraud in Scotland that one transgression could be dreadful. The constant malingerers get away with it.

Bev, I think you will have to be patient and tolerant until the parents can be educated. Alex will be very sensitive to your reactions and it won't help him and will reinforce any ideas he has that he is different.

Don't know when your Birthday is/was Ally, but I hope you have a healthy and happy year ahead.

Whoops just noticed Birthday was Feb 16th - sorry

 

[Caroline]

Hi all!

I am annoyed with some of Alex's friends (actually their mums) - he went swimming to day with his dad and sister and all of his 'friends' were at the swimming baths - and they hadnt even invited him - i think its because of his diabetes because before his diagnosis he was 'one of the crowd' but since diagnosis he has been left out of parties and all sorts of things - it makes me so angry - all the mums have to do is ask me and i would tell them how to treat a hypo - or even be in the background as i realise that lots of people are scared of diabetes etc..
I probably wouldnt have let him go yet anyway as his levels go crazy with exercise - so a bit dangerous - it just makes me so sad that he is already being treated differently! Has this sort of thing happened to any of you and what did you do to overcome it? Bev

Hi Bev, unfortunatly people fear what they don't undestand. One of SImons friends at school used to suffer from asthma quite badly. Whenever I had a party I'd ask if there any foods I needed to avoid giving the children and in case of a hypo or asthma attack what did I need to do. No one else ever bothered which meant some children got left out of a lot of fun things. Onr little boy had seizures and mum would ask if she could stay which was always OK with me as it meant another pair of hands to help and she waasn't worrying the worst would happen and no one knew what to do.

Perhaps it is worth contacting the school and seeing what educational materials are needed and may the kids cam take leaflets home explaining things to parents? It would also help all the other diabetic kids n the school too.

 

[diagonall]

Bev,
Even though you feel upset about this. Can you remember how scared and worried you were when Alex was 1st diagnosed? Also how worried you are now when the slightest thing goes wrong?
Just think how the other Mum's feel about this too. What a responsibility!
I suggest that you go along when the next swim takes place and show the other mums what to do. IE a blood test. A list of bs numbers and what to do.
If it breaks the ice you and Alex invite all the other boys to a swim
Provide a pack of funsize chocs so everyone can share if alex should need a top up. Also quick acting glucose tabs.
Then sit back and have a good old natter with the other Mum's. Whilst the kids have fun.
Even though it's going to be hard, do not discuss his diabetes as this will put them all off

 

[bev]

Thanks all!

Sue , your absolutely right - again! I know it does appear a scary thing at first - and of course i was scared - so why wouldnt another mum be?
I think the problem is that i absolutely know that if it had been one of Alex's friends who was diagnosed with diabetes - i would have gone out of my way to try to include him/her - its what i am like - i could never see another child/person feeling left out for any reason - i have a very strong feeling towards the more 'needy' people and its not my nature to be thoughtless. I do realise though that this is probably something within me and i shouldnt let things get to me - or Alex will pick up on it - though i must admit when it happened yesterday i was super cool in front of him!
I was brought up with an auntie who had Downs Syndrome and she taught us so much about empathy and compassion (sadly she died 2 years ago aged 52) so i suppose i am always on the 'alert' for anyone being miss - treated!
I think i will chat to one of the mums today casually - so i can find out what happened. Thanks all for your very helpful replies! Bev

 

[mikep1979]

hi bev,

maybe you could get alex's school to run something about diabetes for the kids?? i know when my son's friend became diabetic his school was only to happy to help and all the kids came home with some good info as they actually contacted the local pct to see if they could help out. my son already knew lots as i have been type 1 for 9 years now and he is now 5. he knows when im going hypo and knows what to do if i do go hypo. also he knows when to call 999 and what to say. kids are great at learning things like this and also they pass the info they have on to us parents.

mike

 

[Patricia]

Hi Bev

I agree with everything being said. We haven't had much trouble since my son's diagnosis, but he's nearly 13 and pretty independent -- the days of parties are over! However, he did notice very quickly that certain 'friends' didn't know how to cope with his new condition. These friends have consequently dropped out of his circle, and he knows this and feels better that this is the case. Two other friends have become much closer, and look out for him.

The one thing which I've heard from his friends' parents and his teachers is that my son has benefited from taking it all in his stride. He has made virtually no fuss, even with hypos in PE, testing in class, etc, and this seems to have served him well. He takes care of the job in hand, I think, and makes clear what he needs when, in a quiet way. I'm not sure this will always be possible for him, or even is possible for all young ones diagnosed...but I think this has helped him be completely accepted by those he values.

So I guess what I'm saying is that at some point it may be worth just checking with Alex that he *feels* he can be the same, in some basic way? His side of the bargain is not to set himself apart any more than absolutely necessary, but he may not feel able to for some reason? Like type1Sue's suggestion of not talking about diabetes with the other mums, perhaps for a while he may need to do something similar? Or maybe it's all feeling too much of a burden still for him?

I'm just guessing. But I do know that people with any condition have to work twice as hard for the kind of acceptance that everyone else takes for granted. This is completely unfair. With close friends, this shouldn't be necessary, and in my experience, isn't. But with acquaintances and society in general, it is. It suits my son's personality to have a limited circle of friends at the moment -- but if you and Alex want to be 'in' with a larger crowd, I suspect you both will have to do all the running for the meantime.

 

[Copepod]

or write your own leaflet

I know it's extra work, but I reckon it's worth writing your own leaflet about how diabetes affects the individual person being considered, but including comments like "some people may take tablets instead of insulin" or "some people inject twice a day, while others inject once or twice at home, plus each time they eat a meal". You can also include specific details eg "my blood glucose meter is kept in a small black pouch, about the size and shape of a purse, usually in my coat pocket / rucksack top pocket / whatever" "my insulin is kept in .... in ...." "If I say I need food, I really do need something with sugar in it pretty much immediately, but if I say "I'm hungry", then I'm just hungry, but not urgently in need of food". Plus you can include phone numbers of parents / next of kin / neighbour / diabetes team / GP etc.
I've found (for non-diabetes related issues) that an A4 sheet of paper is retained more carefully if it is not white in colour. General leafelt produced by Diabetes UK or producers of insulin / blood glucoe machines are OK, but will need modification to be specific.

 

[bev]

Thanks Patricia and Mike,

Sound advice again.
It is great that your son takes it all in his stride - as far as i am aware so does Alex - the first aid teacher who monitors him at lunch time certainly seems to think so anyway! Always telling us how laid back Alex is etc. so i dont think Alex is 'panicking ' inside (although we can never be certain can we).
I must admit that as he is in year 6 of primary school i did sort of tale off chatting with the mums as most of them dont pick their children up from school now - and i have never been one for liking 'clicks' of women - i find them really shallow and often 'bitchy' - not my scene at all! Alhough there are 2 very nice mums with whom i am in contact with - they also dislike the 'clicky' lot! Please dont miss-understand i actually am very friendly - i just keep my distance from certain groups! But i know that for Alex's sake i may have to bite the bullet and try to be more with the 'in crowd'!
Having said that , he goes up to secondary school in september - so contact with other mums will be severely limited! Bev

 

[Caroline]

When Alex goes to secondary school, you wont see so much of other parents after the first half term. From experience the kids either get lifts or are thrown out of a car at the school gates, and the realy rowdy ones come and go by bus.

I know exactly what you mean by the cliques and am not one for them myself. It is always worth the efoort for the children. I have never been one to say don't play with this boy or that girl because their mummy is this or that as they have to be in class together all day.

The main thing is Alex, he will be fine as he knows he has your love and support, and all kids say their mums nag about tidying bedrooms and doing homework and all the normal stuff, so I think Alex has it made. You're both very special.

 

[bev]

Hi all!

I thought i would give you an update on what happened. Apparently all the children arranged it between them on 'facebook' and thought someone had invited Alex - but Alex isnt on 'facebook' as i dont know how safe it is yet (and i think 10 is too young for something like this) so it seems that the mums were not even aware of the arrangements until last minute - so it looks as if i have jumped the gun a bit - so Alex is feeling a lot happier about it all now!
Alex doesnt even have a mobile phone yet - so facebook is out of the question! (i know it will sound overbearing - but i have heard so many horrific stories about facebook - but i may be warming to the idea of a mobile for him!). Its his birthday in April so i may be tempted to get him one! By the way, how do i put his birthday on here - and can i change my signature to 'parent' in case it gets confusing? Thanks. Bev

 

[Copepod]

Facebook age restrictions & profile status

My understanding (from our lodger who has children aged 14 and 12 years) that 14 years is the minimum age for anyone to be legitimately on Facebook.

It would be less confusing if you changed your profile status to parent / carer - see User CP at left end of top menu bar, but you could also explain something like "Parent of Alex, aged x years" in signature line. Not sure what to suggest about birthday - perhaps ask Admin?

 

[Admin]

Give a diabetes party!

Bev - I moved this post to this forum as it is of relevance to other diabetic parents and will get lost in the general messageboard...

In response to your post - when I was diagnosed (a week before my 5th birthday!) I had to give a talk at school with my teacher (when I was 5 1/2!!) - which gave everyone a greater understanding of diabetes and made all my school friends realise I had not developed a second head!!

Have you thought of inviting Alex's 'crowd' and their parents around to your house and do an informal talk with Alex, or doing one in his class at his school - to give them a greater understanding of diabetes and be able to ask you questions - you know what people are like - they may feel like that they can't ask - whereas I know you would welcome it! Put yourself in their shoes also - they are scared and would hate anything to happen to Alex in their care (although you can point out this is no more likely than one of their kids falling off a wall!)

Just a thought... but ignorance is the greatest enemy.

 

[Copepod]

The best talk about diabetes I've ever known was given by a 17 or 18 year old young man to the 11 other young explorers in his "fire" (group) in a youth club in Nanortalik (small town in south west Greenland) in 1992. Unfortunately, the 2 leaders couldn't listen to all, due to rounding up kit, food etc, due to delay of ship in sea ice. It turned out to be very useful to me some 6 years later, when I was diagnosed! Still, the basic principle that diabetes needn't stop participation expeditions etc was a very important lesson. Plus, another member of the fire was deaf, so that might help in the future, too - I already have a sign for my name.

 

[Anthony Neve]

Well done guys! all sound advice!

Bev maybe you could run a party for your son's birthday and incorporate the suggestions about getting his friends involved with his diabetes?

I remember (i must have been about 10 or 11) i was asked to give a talk to one of the classes in the year below me- in 15 minutes time )
so i just walked in there and started talking to a class full of kids about diabetes (i had been diagnosed for about 2 years then so everything was pretty fresh in my mind). they seemed to enjoy it and i think that some of them got something out it too.

in the Secondary school (i was around 14/15 at the time) in assembly one of the teachers just starts talking about a guy on the street in Norwich who was having difficulty, he wasnt making much sense and seemed drunk. Well stright away i was thinking this guys having a hypo, and then the teacher said he had recognised that this guy was possibly a diabetic and having a hypo, then of course the entire assembly (about 300 kids) turn around and look at me all at the same time!

anyway i later found out the teacher knew about the diabetes because my brother (an identicle twin, also type 1 a year after me) and spent time explaining it all to his class and the teacher was his form tutor.

 

[Northerner]

... By the way, how do i put his birthday on here - and can i change my signature to 'parent' in case it gets confusing? Thanks. Bev

Hi Bev,

I think you can add Alex's birthday by clicking on the 'Calendar' link, then click on 'Add New Event'. It then lets you enter the date and description etc.

Similarly, click on 'User CP' - this will allow you to edit your signature and also your profile to change to 'Parent'

Hope this helps!

 

[katie]

Facebook, at the age of 10?! What is the world coming to??

 

[wendyh]

Hi Bev
I know what you mean - my daughter is consistantly not invited to friends birthday parties and it breaks my heart when the invitations go out and she is excluded.

If the other mums would just ask what she eats - what she likes to do - and if she would like to play for a few hours life would be easier.

People do not know about diabetes and seem to think that she is going to drop down and have some sort of fit - and then.....................give her a mars bar!

Friends are the people who want to help and know as much as they can - most mums at my school treat my daughter like some kind of leper.

I have organised a diabetes day at school, got my DN and someone from the local support group to talk to the kids in assembly and the kids have been great looking out for her as she is the only pupil in the school with diabetes.

There is a stigma attached - but really it is about educating as many people as possible.

Wendy