son beginning to hate being type1

[mcr]

Just wondered if an parents of type1 children have experienced this.
Son now aged 9 but diagnosed at aged 4. All the experts keep reminding me that as he was young when diagnosed and has since grown up with type1 he would be able to cope with it better. I am now beginning to have a battle with him over his diabetes from blood testing to eating. Some days he just says that he wished he was dead and hates his diabetes. I know it is something that he has to live with, but it worries me that when he becomes a teenager he might do something silly.
Any thoughts?????

 

[sunflower_harvester]

Ah dear, Its ok for him to feel resentful, Ok he was diagnosed when he was very little so wont remember much different but that doesn't mean hes unaware he's 'different' or that he'll do something silly. I cant give you any advice as a parent just as someone who has type 1 since childhood (aged nearly 3) and I really feel for you as its got to be painful for you to see him go through this but its normal and its ok. My advice would be listen-let him tell you why he hates it and don't brush over it with the soft things people said to you when he was diagnosed ('it could be worse' 'at least its treatable' 'you just have to get on with it'- you know what I mean!)

What are the main battles you are having with him?

I've seen a couple of books on Amazon that might be some use but have only read bits of them so don't know how good they would be for you:
Growing up with diabetes: what children want parents to know by Alicia McAullife (writen by a girl with T1 who also runs diabetes summer camps in America about her experiences and that of the campers) and
Diabetes Burnout:What to do when you cant take it any more by William Polonsky (its quite funny and very on the mark)

Hope that helps a bit, think there might be s forum for kids somewhere on the diabetes UK site but don't know where-anyone know?

 

[Admin]

Mcr

Again - I am not a parent of a diabetic child - but once was a diabetic child. I was diagnosed aged 4. It is a tough one - I know I went through a rebellious stage when I was about 12-14. I used to go to the sweet shop and eat sweets with friends after school. It was in the days of two injections a day and a strict diet. No bolus to do a quick correct! I hate to think of the damage I did then...I can only think as an adult that my diabetes has always made me feel 'special'. But at school you don't want to feel special - you just want to fit in and be like everyone else. I suggest that you address this with your son - and try to explain that if he does look after himself he can be like everyone else - do sports, and live a normal life. (I travelled for a year - have jumped out of planes, white water rafted, and scuba dived!) If he doesn't look after himself - then he won't be able to fit in as easily and it will involve going to the hospital and doctors more often - which will make him 'stick out'. It's just a tact - but it may work.
It was only years later when I was chatting to my Mom that she pointed out to me that I never used my diabetes as an excuse for not doing anything while at school (How dumb!) If I didn't want to do sport (every kid wants to miss PE now and then!) I used to say I had a bad periods - yet I had the perfect excuse not to do it! I would also encourage this attitude. It has set me in good stead and apart from driving buses (which I never wanted to do!) I cannot think of anything I have not been able to do! I really hope this helps - I am sure you may have a way to go - but you will get there xx

 

[sofaraway]

have you looked into the Diabetes UK holidays? I know that these have really helped some kids as they can mix with other kids with diabetes.

 

[Freddie99]

Hi,

I sort of know where you're coming from. I've had diabetes since I was five and thirteen years on I still resent the fact that I have it. I've been through my bad patches of not testing my bloodsugar for a few days at a time. I sympahise with your son. But what he needs to understand is the more that he gets right now regarding his diabetes the less he will pay for it later in life. As for wishing it had killed me, yeah, I suppose I have done that. I know that this is because diabetes has stopped me from having my ideal career of being an army officer.

Tom H

 

[delta]

hi there i read your post about your son my son is also
9 and was diagnosed at 4 but i allways try to keep everything upbeat and tell him if he can cope with his diabetes theres nothing he cant achieve i dont let him see the side of me that is totally distruaght how about a youth part on this website that would be good as my son would love to have someone his own age with the same condition he could chat with

 

[Copepod]

Sadly, it is simply not true that with good self management, a person with Type 1 diabetes can do anything. I was diagnosed aged 30 years, which made my degree in Marine Biology virtually useless, due to ban on professional SCUBA diving, driving minibuses etc (ruling out a developing career in ecotourism), working on certain ships, serving on British Antarctic Survey bases etc; prevented me rejoing Territorial Army (joining all armed service, in fact) etc. There are ways round some things eg I went as an unpaid leader on a youth expedition to Falkland Islands & South Georgia (also Chile, Costa Rica, plus plenty of independent travel), but it is very frustrating.

Sorry to be truthful! Perhaps best to concentrate on careers that are open, despite medical restrictions.

 

[Admin]

how about a youth part on this website that would be good as my son would love to have someone his own age with the same condition he could chat with

Hi Delta - at the moment your son can put a post up in the general messageboard to see if there are any other youngsters out there reading the posts - I certainly want to encourage them! The site has only been active for less than a month - I am still monitoring to see how it should be developed. I am completely in agreement with a youth section - but have to work out how to do this 'safely'. I will be looking into it.

 

[pingu36dd]

Parent with type 1 child

Sorry to hear you are having problems at the moment.

Thought you might be interested but a doctor (and a type 1) is writing a book for parents with children who have diabetes. It covers the emotional aspects that come hand-in-hand with living with diabetes from diagnosis to day to day situations.

It should be published early next year.

 

[h8y8h@hotmail.com]

My newly diagonosed 11yr old daughter would also really benefit from a kids page to communicate with others, she is longing to find a girl her age that has recently been diagonosed that she can penpal with.

 

[WorzelGummidge]

Hi Delta - at the moment your son can put a post up in the general messageboard to see if there are any other youngsters out there reading the posts - I certainly want to encourage them! The site has only been active for less than a month - I am still monitoring to see how it should be developed. I am completely in agreement with a youth section - but have to work out how to do this 'safely'. I will be looking into it.

Please please please do this. I was desperate to have someone with diabetes to talk to when I was about 13/14 and really struggling. I couldn't find anywhere online for young adult diabetics to talk and it would have helped me so much!

I think a lot of teenagers with diabetes go through a rebellious phase, whenever they were diagnosed. I was 10 at diagnosis and was a "good" diabetic for about a year before I started rebelling. I remember one day doing an injection that hit a blood vessel, and I threw the pen across the room and cried uncontrollably for over an hour, thinking over and over again how unfair it was that I had to do it. Through my teen years I hardly ever checked my BGs - I'm talking less than once a month - eating whatever I wanted and not going to my hospital appointments. When I did go, I made up all my BGs because I didn't want to be told off. I'm sure your son isn't going to be as bad as me because he has you supporting him, whereas I managed my diabetes with no help from my family or friends. It's a big burden for a kid and your son shares that with you. I think finding a support group, either online or offline, will really help him.

 

[kaycimn]

hi there i read your post about your son my son is also
9 and was diagnosed at 4 but i allways try to keep everything upbeat and tell him if he can cope with his diabetes theres nothing he cant achieve i dont let him see the side of me that is totally distruaght how about a youth part on this website that would be good as my son would love to have someone his own age with the same condition he could chat with

Hello, I'm excited to see so many parents with 9-10 year old children who were diagnosed type 1 at age as a young child -- my situation also. It has been a long 5 years with many ups and downs. My son has had many moments of tears and resentment toward this disease, and all of the talk about a "cure someday" just gets him even more frustrated.

This is how we cope:

Bad days are normal, and so are the feelings. I tell my son they are like the weather -- we have a dark day by the sun is still there and we will have a better day tomorrow. As a family, we listen and but we don't try to "fix it".

Encourage contact with other kids. My son is fortunate that he has a friend in his school class with type 1. They go the health office for checks together and have forged a friendship. Twice they have gone to Diabetes day camp and had a great time. Plus, as parents, we support each other and have the peace of mind to have our sons go on play dates at each others' homes without having to go through the whole routine -- they already know! That is a huge support for me! I've noticed that when we (as parents) are handling things well, my son copes better. So I make sure that when we change his pump site we have plenty of time and try to give me notice for BG checking so he feels he has some control over things.

 

[Adrienne]

Hi

For all the parents who have written here, (I'm one of them by the way) there is a support group purely for parents with children with type 1. Go to
www.childrenwithdiabetesuk.org. There is a wealth of info on that website, it is written by parents with type 1 children. There is info about everything and there is lots more to go on it.

There is an email support group which you can join if you want to. It has been a life saver for me and others, people I call friends. We are from all over the UK and some of us meet up with whoever is local when we have the time. We also have a weekend away once a year which is just fantastic. The support is amazing. You don't have to join, you can take a look and de register if you want.

I think support is crucial for all things, helping with the children and also the emotions we, as parents, go through. It's hard for us but in a totally different way for our children, we cannot imagine what they are going through but have to help them every inch of the way.

Take care
Adrienne

 

[mikep1979]

i think all diabetics go through a faze of not wanting to be so any more. before i was diagnosed i was in the army in the paratroopers and i was very fit and healthy. i went on tours of duty and i loved my time in the forces. when i got diagnosed i started off being really good and doing everything a model diabetic would do, but after a year i decided that i didnt want to be diabetic. i was 21 at the time and just wanted to be "normal" i wanted to go out with my mates on the weekend and get drunk and not have to worry if i would end up in hospital due to the high sugar levels i got. i also wanted to be able to eat what i wanted when i wanted and also to be able to skip meals if i wanted. i went through a few years of not taking care of myself at all and ignoring all the advice i was given. i had very little support at all besides my mum and others who knew that i wanted to be ok. my consultant at the time was very blunt and we didnt get on due to his attitude towards me. i missed lots of appointments and also would become very agitated in his company. i ended up signing myself out of his care and took it on myself to look after my own diabetes as i was the one living with it. i was so wrong and for years had problem after problem. it took moving to a new area and also moving to a new diabetes team to turn this around. i am so much happier now and i look after myself so much better.

one of the big things i find is that a lot of diabetics suffer some form of depression at some stage. i know i did. i would say that maybe it is worth while talking child and seeing what they actually feel about their diabetes.

hope this may help you to understand a little of what some diabetics can go through

mike

 

[bev]

Hi all!

My 10 year old son is desperate to have a kids section on this site!
He loves reading all the posts i put on - but i know he would prefer a kids section- away from all the adults!

PLEASE THINK ABOUT SETTING ONE UP!? Bev

 

[sofaraway]

there is a kids and a teens section on www.childrenwithdiabetes.com they are both fairly active so you might want to try there Bev.

 

[bev]

Hi Sofaraway,

I did try using this site - but its an american site - so although the information is the same - they all use pumps and slightly different methods and its a bit harder to understand or feel part of - but thankyou anyway! Bev

 

[kojack]

Hi all!

My 10 year old son is desperate to have a kids section on this site!
He loves reading all the posts i put on - but i know he would prefer a kids section- away from all the adults!

PLEASE THINK ABOUT SETTING ONE UP!? Bev

I think it's a great idea Bev but in view of many recent events with forums which lead to chat rooms and subsequently the video or instant messenger, I would be cautious.

There are a lot of sikkos out there misusing the internet and having been involved in monitoring a forum to detect these I couldn't believe just how sick these users are.
All of us here have a common concern; chatting and seeking informed info on peoples' experiences and ways of coping with diabetes.

I know this must seem negative, but it is only my opinion. Others may view it differently.
I think you parents of youngsters must really want everything possible for them and I have nothing but admiration for the way you are dealing with their obvious frustration.