Non-Compliance In Teenage Diabetes

[everydayupsanddowns]

Thinking about this more generally...

The *big* thing that doesn;t seem to have entered into this discussion yet is the degree and quality of psychological support available to those who are struggling.

Not something I've ever really been offered, but it strikes me that it could be crucial to get some good counselling/support for young people who just cannot or will not engage with their diabetes.

 

[bev]

I wonder whether you are used to getting *much* more detailed advice than I am DM - I'm not sure I'd get much out of my team other than general principles and 'see how it goes'.

I'm also not entirely convinced about this:



I half wonder if a specialist who deals with teens on a much more regular basis would be more grounded/experienced in age-appropriate advice because they are more in touch with the realities/behaviours of young people whereas consultants who only ever deal with adults might be more likely to take the view of "well you shouldn't even be drinking at your age!". I guess it would depend on the individuals involved. I absolutely agree - teen's Consultants are not easily shocked they have heard it all before and often surprise the teen's with their forward thinking and answers to what the teen might perceive as an 'awkward' question - one teen I know asked why she shouldnt just keep drinking as it keeps her levels stable! Unflustered the Consultant then explained she would then be diagnosed with another condition - alcoholism!

I think you do make important points about young people feeling they are not being treated as children though, and I'm sure for many that would be important. Though I guess others might struggle to open up to 'strangers' if they have had a good relationship with a consultant for many years and have built up a degree of trust and understanding. Again I agree - Alex has known his team for so long now that he treats them almost like members of the family - but that doesnt stop him opening up to them if he needs to - mostly because he is never judged by them and they talk to him like he is an adult which is how it should be. I guess some of this comes down to personality and having a good team who listen and dont judge - blaming a young adult for chaotic levels really isnt helpful or productive - but offering advice and support might be. There is also a phsychologist available for anyone struggling (including other family members) which can be a good safety net if things start to deteriorate for a young person.

As ever YDMV 🙂

Always keeping an open mind enough to listen to your teenager is also important - not judging them if they open up to you goes a long way to building up trust with them and in turn means they have a sounding board for those times when it all just gets too much - so a real family affair! Bev

 

[Redkite]

The *big* thing that doesn;t seem to have entered into this discussion yet is the degree and quality of psychological support available to those who are struggling.

I agree with this, and not only for young people with diabetes. Psych support is difficult to access in many areas of the UK. A referral to CAMHS is often the last resort instead of part of the process. But there are other support systems such as pastoral care in schools which could make a difference to a struggling T1 teen if there was more widespread education about type 1 for school staff.

DeusXM, you make some valid points about teenagers wanting their independence, and I agree that this should be encouraged, however they also need care, guidance, and boundaries to push against - in all areas of their life. Diabetes care is just one small facet of the life skills teenagers will gradually become independent in - I don't treat it differently to anything else. I also don't want to set him up to fail, I want to help him succeed. I am well aware that when he fully takes over his D care, his control is likely to worsen for a while - that will be hard for me to see, but I will have to accept it and offer help when he wants help.

Stephen, the cynic in me suspects that you started this thread to basically say to parents that our dedication to supporting our type 1 teens is the cause of hospital admissions for non-compliance. Yet you seem reluctant to actually come out and say it. Is that your view?

 

[DeusXM]

the cynic in me suspects that you started this thread to basically say to parents that our dedication to supporting our type 1 teens is the cause of hospital admissions for non-compliance. Yet you seem reluctant to actually come out and say it. Is that your view?

I think there's certainly a case to be made that parents who are very intensively involved in their kid's diabetes care can do more harm than good. This would be more commonly known as helicopter parenting. Before anyone jumps into a rage, let me reiterate that this is not a label I'm allocating to any specific person here, it's simply a concept that needs to be acknowledged.

That's rather why I asked the question about what was meant by 'involvement' in diabetes at the very start of this thread. It's clear that there's disagreement here about what a reasonable level of involvement would be. I can only base my view on my experiences, which are obviously limited in scope. Interestingly (although obviously this is an inherent limitation of the forum), we don't have any first-hand accounts from children and teenagers with diabetes on what they think will help them.

 

[Northerner]

...Interestingly (although obviously this is an inherent limitation of the forum), we don't have any first-hand accounts from children and teenagers with diabetes on what they think will help them.

They're probably all on Facebook! 🙄

 

[everydayupsanddowns]

I think there's certainly a case to be made that parents who are very intensively involved in their kid's diabetes care can do more harm than good. This would be more commonly known as helicopter parenting. Before anyone jumps into a rage, let me reiterate that this is not a label I'm allocating to any specific person here, it's simply a concept that needs to be acknowledged.

True, but equally it needs to be ackowledged that some pretty heavyweight thinkers suggest:

Ragnar Hanas says that outcomes are better where parental involvement is maintained during adolescence. Presumably as a paediatric endocrinologist and as an academic he has plenty of evidence to base that on. "Don't hand over too soon" is his advice.

Personally a lot of what is being said on both 'sides' of this conversation makes a lot of sense to me.

Yes. Too much meddling/control might be detrimental to some teens. But conversely it might be *exactly* what others need.

A lot of parenting in my experience is about guiding/nurturing/establishing good patterns and then supporting the young person as they develop into the adult they will be.

I saw a heartbreaking documentary about people growing up in care (Neil Morrissey presented) and there was a major problem for youngsters who effectively get booted out of the care system at 18 with absolutely NO support whatever. In some cases they go from a fairly institutional environment to nothing. No parent or support network to call on to ask about putting up a shelf or whatever. No one to consult about 1001 tiny (or not so tiny) things, or even just borrow a few quid off temporarily to allow a study course to be completed.

I certainly valued ongoing support in various aspect of life well into my 20s though I considered myself 'independent' in my own head.

 

[Twitchy]

I suspect it might be something like a normal distribution - think something a bit like an upturned cereal bowl tapering to flat on left & right sides - some teens will need an almost totally 'hands off' approach at one extreme, most like RH says benefit from parental input of varying degrees with a few at the other extreme actually needing a touch of 'helicopter parenting'.

I guess the bottom line is it all depends on the unique personalities, experiences, knowledge & circumstances in each case. My mum died of cancer when I was 13. My dad had clinical depression for possibly decades after. As a result, I never felt like I had the 'luxury' of kicking back & rebelling, because frankly there was noone else to give a damn if I hadn't. How things would have panned out if mum had survived, bearing in mind she was the parent who 'did' 95% of the diabetes stuff, I'll never know. But we're all different, & frankly I think this thread is a bit of a red herring, getting dragged into the parental involvement aspect...my gut feeling, for what it's worth, is self image & peer pressure are more significant, at least in acute cases of neglect / rebellion.

 

[DeusXM]

I suppose the obvious point to make is it's probably worth asking those here who were teens with diabetes what they think caused them to rebel, now they have the advantage of hindsight.

Disappointingly for me, I have very little to contribute to that as I was extremely boring and never actually rebelled or stopped actively managing my diabetes.

 

[cherrypie]

I think anyone can make assumptions as to what is best for parents and children with Type1 diabetes. The plural of anecdotal is not data and people differ in their parenting and approach as to how they manage their child's condition.
Parenting in itself is not an easy task and adding diabetes to the mix makes it even harder. There are studies that show parents sometimes develop PTSD when their child is diagnosed. That shows how serious it can be for the family.

http://www.ncbi.nlm.nih.gov/pubmed/15968237

I tend to agree that peer pressure plays a large part in today's children's esteem. If you don't have the right clothes, the same attitudes etc. life can be very hard being an individual. This was something that I never experienced as a child as most kids had the same set of parental rules. If you don't follow the leader now then you are ostracised and all teens want to fit in, it's part of growing up. When they get older, they usually decide what their aims, goals and aspirations are because they have outgrown peer pressure.

As to the "helicopter parenting", this article asks if it is such a bad thing.

The Myth of Helicopter parenting.
http://www.ncbi.nlm.nih.gov/pubmed/15968237

I've said it before and will say it again, Hats off to all parents of children with diabetes. You do a grand job and should not be made to feel that someone with no experience seems to know the best way for you to parent. Each to their own.

 

[Redkite]

Interestingly (although obviously this is an inherent limitation of the forum), we don't have any first-hand accounts from children and teenagers with diabetes on what they think will help them.

I saw this before popping out to pick up my T1 12yo from his guitar lesson, so I asked him on the way back. The conversation went as follows:

Me: can I ask you a question? People on my email group are wondering whether teenagers like to have their parents interfering with their diabetes all the time or if they would prefer to be left in peace to look after it themselves?

Silence

Me: so what do you think?

Him: about what? Sorry, I wasn't really listening.

Sums it up really!!!! He then went on to talk about something he'd been doing in English that day.

🙂.🙂

 

[everydayupsanddowns]

I saw this before popping out to pick up my T1 12yo from his guitar lesson, so I asked him on the way back. The conversation went as follows:

Me: can I ask you a question? People on my email group are wondering whether teenagers like to have their parents interfering with their diabetes all the time or if they would prefer to be left in peace to look after it themselves?

Silence

Me: so what do you think?

Him: about what? Sorry, I wasn't really listening.

Sums it up really!!!! He then went on to talk about something he'd been doing in English that day.

🙂

Priceless!

That genuinely made me LOL!

Men are from Mars, Women from Venus and Teenagers are from another planet. Entirely.

 

[bev]

I think anyone can make assumptions as to what is best for parents and children with Type1 diabetes. The plural of anecdotal is not data and people differ in their parenting and approach as to how they manage their child's condition.
Parenting in itself is not an easy task and adding diabetes to the mix makes it even harder. There are studies that show parents sometimes develop PTSD when their child is diagnosed. That shows how serious it can be for the family.

http://www.ncbi.nlm.nih.gov/pubmed/15968237

I tend to agree that peer pressure plays a large part in today's children's esteem. If you don't have the right clothes, the same attitudes etc. life can be very hard being an individual. This was something that I never experienced as a child as most kids had the same set of parental rules. If you don't follow the leader now then you are ostracised and all teens want to fit in, it's part of growing up. When they get older, they usually decide what their aims, goals and aspirations are because they have outgrown peer pressure.

As to the "helicopter parenting", this article asks if it is such a bad thing.

The Myth of Helicopter parenting.
http://www.ncbi.nlm.nih.gov/pubmed/15968237

I've said it before and will say it again, Hats off to all parents of children with diabetes. You do a grand job and should not be made to feel that someone with no experience seems to know the best way for you to parent. Each to their own.

Hi Cherrypie,

I couldnt have put it better myself! Thankyou for your understanding and insight into being the parent of a teenage Type 1 diabetic - it shows you are one of life's listeners and learners. It is a difficult enough job as it is without amateurs phsycho-analysing us all!

Anyway - must rush now - off to sharpen my blades.........Chopper 🙄

 

[Copepod]

I saw this before popping out to pick up my T1 12yo from his guitar lesson, so I asked him on the way back. The conversation went as follows:

Me: can I ask you a question? People on my email group are wondering whether teenagers like to have their parents interfering with their diabetes all the time or if they would prefer to be left in peace to look after it themselves?

Silence

Me: so what do you think?

Him: about what? Sorry, I wasn't really listening.

Sums it up really!!!! He then went on to talk about something he'd been doing in English that day.

🙂.🙂

Wish there was a "like" function for posts like this one 🙂

 

[mcdonagh47]

I saw this before popping out to pick up my T1 12yo from his guitar lesson, so I asked him on the way back. The conversation went as follows:

Me: can I ask you a question? People on my email group are wondering whether teenagers like to have their parents interfering with their diabetes all the time or if they would prefer to be left in peace to look after it themselves?

Silence

Me: so what do you think?

Him: about what? Sorry, I wasn't really listening.

Sums it up really!!!! He then went on to talk about something he'd been doing in English that day.

🙂.🙂

LOL- diplomatic deafness ? Ignoring a question he doesn't want to answer ? 😉

 

[Lauras87]

I saw this before popping out to pick up my T1 12yo from his guitar lesson, so I asked him on the way back. The conversation went as follows:

Me: can I ask you a question? People on my email group are wondering whether teenagers like to have their parents interfering with their diabetes all the time or if they would prefer to be left in peace to look after it themselves?

Silence

Me: so what do you think?

Him: about what? Sorry, I wasn't really listening.

Sums it up really!!!! He then went on to talk about something he'd been doing in English that day.

🙂.🙂

LOL - good to see he listens to his mum

Priceless!

That genuinely made me LOL!

Men are from Mars, Women from Venus and Teenagers are from another planet. Entirely.

Mike teenagers aren't human, they are sleep robots.
Mmmmmm sleep, ok I want to be a teenager again!

 

[bev]

I saw this before popping out to pick up my T1 12yo from his guitar lesson, so I asked him on the way back. The conversation went as follows:

Me: can I ask you a question? People on my email group are wondering whether teenagers like to have their parents interfering with their diabetes all the time or if they would prefer to be left in peace to look after it themselves?

Silence

Me: so what do you think?

Him: about what? Sorry, I wasn't really listening.

Sums it up really!!!! He then went on to talk about something he'd been doing in English that day.

🙂.🙂

Hi Redkite,

Thats hilarious! Your sure you havent brainwashed him into answering like this? Maybe wait until you leave the heli-pad next time as he clearly couldnt hear you with all the noise.Bev

 

[Lauren]

So this is my experience with being a child / teenager with T1:

Diagnosed in 1994 aged 6. My mum was given hardly any advice on how to treat me, just told to inject me twice a day and test twice a day. Despite this, I had good control. I insisted on doing my own injections from day 1.

I had a few bad hypos (I think about three of which ended in loss of consciousness) - I do kind of wish me and my mum were given more advice on treatment of hypos. We were just told to give me a couple of biscuits if I felt funny 😱

I had problems when I reached my teenage years, I think it must have been the raging hormones or something! But I couldn't get my sugars level and I ended up in hospital a lot.

This all stopped when I left that particular clinic in 2002 and moved to Wales, my new clinic was much more advanced and gave out half-decent advice (yay) and I was put on MDI which made my control a lot better. However, now my problem was that I felt that I could not inject at school, and so for over two years I did not have any insulin at lunchtime and would get home to levels of 15 or above. I wish I hadn't done that, I hate to think of what that's done to me complication-wise, but I was really frightened that I would get knocked in the common room by all the hyper teenagers if I tried!

However when I was 17 I finally got over that and had my friends 'guard' me at lunchtime. No one even noticed. I had been totally overreacting all that time 🙄

Then I had my problem with Dawn Phenomenon but now my pump has sorted that out 🙂

So basically my mum made sure I tested, injected and ate, and that I recorded everything in my book, but she gave me a lot of freedom too, and I became very independent about my Diabetes from a young age. Apart from my times in hospital and my self-inflicted bad control between the ages of 15 and 17 it worked out ok. I do wish that I had more support from my Diabetes teams though, I feel these problems could have been addressed if I had had that.

 

[delb t]

Lauren thankyou for sharing your experiences -I have always felt that being able to inject in public is an important hurdle to get over I remember in the first few weeks of dx- with our son hiding behind a menu in a shopping centre whist he injected and I read a few posts on here and realised this was something he had to gain confidence with - OR WHY should he go to a toilet to inject as some do - So we made a real effort to eat out more etc - he now injects anywhere no-one ever notices and if they do who cares- in fact one waiter abroad was so interested in the carbs and cals picture of tirimasu he took it to the chef to show him.
From what you described -It shows that the care recieved from teams needs to be of real quality and its only thanks to people/parents seeking the best for their children or by reading of others care on a forum such as this that they can find out that there is better support out there[our support was excellent from our team and from here ]

 

[Redkite]

Hi Lauren, thanks for sharing. Sounds like your Mum got the balance right between supporting you and letting you have your independence 🙂. Shame your first clinic team were so rubbish, I do think that they are key in supporting the whole family with diabetes.

 

[Redkite]

LOL- diplomatic deafness ? Ignoring a question he doesn't want to answer ? 😉

He doesn't do diplomatic! I think he has reached an age where he just tunes out to my frequency 😉. If I want his attention I have to either get eye contact first, or use a suitable keyword such as Minecraft, iPad, Temple Run, etc.