Your Sons Condition Is Taking Up Too Much Of Our Time

[sandra04]

Oh the joys (not) of being told by my sons school last week that his "condition is taking up too much of their time!!!!"


big long story so wont bore you all, a 'bad wk' of highs n lows more or less and he'd only been put on an additional insulin that wk so until his body took a wee bitta time to adjust to this it was certain there were gonna be a few ups n downs for a little while.... but lets just say we walked outta the school feeling all sorts of emotions .. upset, angry, frustrated, furious, alone and unsupported and for the 1st time in the 7 1/2 yrs my 10yr old son has had diabetes was made to feel somewhat guilty because he has what he has.

Anyone else experienced problems with the schools?

Hes a primary 7 pupil and the events of last wk and the attitude from the school mainly has implanted real fear and anxiety into me with wondering whats lies ahead for going to secondary school if this is whats happening in primary school.

I made calls to the school board explaining what was said at the school and i have since had a meeting with the head of the school to express my disappointment and the treatment both my son and i received.

as we all know , if we could switch this whole diabetes thing off even if only for a few hrs or during school hrs then we all know this would be nothing short of fabulous but we cant....Fact !! and the sooner schools realise this and just let the kids do what they need to do to sort out the lows , the highs the better and stop giving us grief because god only knows that the kids have enough to go through coping with it, as do the parents without then the attitude and lack of support from the schools who are too busy mouthing off that the 'diabetic kids are taking up too much of their time' 😡

Another parent of a child with diabetes directed me to a link http://www.childrenwithdiabetesuk.org/ and on reading some of the other parents stories and experiences they too have had i seen how widespread the problem is with regards the parents struggles with the schools to just get the children the support they need without it taking up too much of ANYBODYS time .
Nobody doubts or denies that the schools have plenty do as it is and loads of other children to look after besides the diabetics, asthmatics etc but these kids also cannot be seen as just the kids that take up too much of their time just because of the conditions they have.



ok ive rambled on enough , sorry but it just gets to me at times and sometimes ive no other place to vent my frustrations with these things except on sites like this amongst ppl who are going through the same things and so know exactly what im going on about and have a better understanding of how im feeling.

cheers for reading folks 🙂

Sandra

 

[vince13]

Hi Sandra, just read your post and can hardly believe you could be treated so insensitively - no wonder you're down.

My daughter works in a local Primary School (OK so it's small - at the back of God's elbow - but it's still a school - so far) and she's SENCO there and they have various children with needs of one type or another (asthma, Big D etc) and they always "have time" for them and their parents.

This is no help to you but I just wanted to send hugs - you deserve it - hope you can get some resolve to this somehow.

Just had a word with said daughter and am told that the school has to comply with the Disability Act so far as inclusion is concernd. Now I don't know what that means (apart from the obvious!) but one of the other parents on here will know what I'm trying to say. I know the school is probably "complying" in the phyiscal sense of the act but in the emotional sense they're not. There is also always resort to the Education Authority saying you're not getting total support but I guess you wouldn't want your child any more marginalised than you fear he is now.

Does any of that make sense ? I hope so. Anyway hugs again,

 

[Steff]

hi sandra and welcome im sorry to hear you have been treated this way it is awful they are mums on here with children in school im sure they can help you out.

 

[Northerner]

Sandra, welcome to the forum🙂 It is dreadful that you and your son have been treated like this. I'm sure it would not take much 'effort' on their behalf to actually be supportive and helpful rather than negative and complaining. I hope that your talk with the head registers with him and the staff, and that the attitude changes dramatically for the better. How would they feel if their own children were treated like that? Sometimes you wish that they could 'walk a mile in your shoes' and open their eyes a bit to just how difficult things can be without them making things harder. Very angry on your behalf!😡

 

[Adrienne]

Hi Sandra

I've only just seen your message. I am a part of the UK Children with Diabetes Advocacy Group and this behaviour cannot be tolerated and they need sorting out.

The website you have been directed to www.childrenwithdiabetesuk.org is our website and you can join a mailing list on the home page. If you haven't already, I urge you to join the mailing list and please send an email saying what you have here and what the problems are. You will be inundated with help and how to deal with this.

You do not need to feel like this, you are in the right and they are most definitely in the wrong.

Do you have full care plans in place for everything from normal daily school like to PE and fire drills etc. If not then your DSN is lacking ! The team should have shown you and helped you put together a proper care plan. If you don't have this then I would suggest that you sort one out and get it into schools. We can help you with that as well. The school are obliged to sign it and so are you.

They then have to follow this care plan and this needs to include about highs and lows and what they need to do to keep your son safe regardless of whether he is in year 1 or 7, he is a child.

With regard to secondary school, the email group can help you with that as well. May well need to start making appointments to see the head teacher soon ish to get the ball rolling with getting them up to speed with care plans for when your son starts.

Its lots of work I'm afraid but it leaves every stone unturned so there can be no quibbling and if they do then you can 'sock it to them' so to speak.

I really feel for you. I know all the above is easy to say but oh so hard to do and put in place but it is the way to go especially with a school as yours is turning out to be.

How dare they say its taking up too much of their time. Have you told them that if they don't do what is necessary and something happens like brain damage if he hypos and they ignore it then there will be huge consequences. Horrid as it sounds sometimes these schools need it spelling out and words and sentences with brain damage and death in them work a treat, believe me. I know plenty of mums and dads that have had to do this.

Take care and hope to see you on the email list.

 

[grahams mum]

hi you have tgo back to the school and they have to do the best they can i am so lucky with graham school i choose the wright one you have to insist good luck daniela

 

[am64]

adriene what a fanastic post this gives such support ...the reason this is such a good place...my son has asthma problems ...not quite like the D ...but he has too have so much time off because of cold air allergy... every year i go through the whole Educational welfare buisness...meetings with ed authorities threats to prosecute etc ... because of his attendance...hes now 15 and not been in school cos of broken hand...this but totally accepted by school no prob at all, they understand... because they can visualise it...but if hes off with asthma i have to get medical notes etc.. dont let the educational people bully you at all, this is about your sons care xx best of luck
ps My son has been getting A and A* in most of his gcse work despite his 60 % attendance ...

 

[Adrienne]

adriene what a fanastic post this gives such support ...

Why thank you very much, I aim to please.........🙂

 

[sandra04]

thanks for the support

thank you all for the support and advice , its so appreciated.

came up against another problem with the school today 😡

The wee guy takes a packed lunch to school. Each morning i make it clear to him what food items he must eat for the 15min mid morning break in school. today he had 2 items , 1 piece of fruit and his 1 item of complex carbs (a cereal bar actually)

He was told he was "not allowed" to eat the cereal bar. When he asked why he was told that "your only allowed to eat fruit at breaktime" (Im all in favour of the whole healthy eating thing which is why he also had his piece of fruit but he also needed the other item to tie him through until lunchtime without any lows) . He was told he could eat it for lunch instead.

As a result of him not being allowed the cereal bar for his break along with the apple he went low, down to 2.0 , was then given the cereal bar that he'd been refused to fix the low, as well as 3 additional biscuits from his emergency box.

Im going to have to go and see them once again, i'll call in on mon morn as this is just outta order and no thought what so ever is being given to the potential damage they could be doing to my son.

Ive also told the wee guy that if hes refused this again then insist that he has to have it and failing that ive told him to get them to ring me. Im nearly asking him to stand up for his rights and insist that he gets what he needs.

anyway, just another grumble frm me folks. Thats 2 in one wk, im on a roll 🙄

take care everyone

sandra

 

[Adrienne]

thank you all for the support and advice , its so appreciated.

came up against another problem with the school today 😡

The wee guy takes a packed lunch to school. Each morning i make it clear to him what food items he must eat for the 15min mid morning break in school. today he had 2 items , 1 piece of fruit and his 1 item of complex carbs (a cereal bar actually)

He was told he was "not allowed" to eat the cereal bar. When he asked why he was told that "your only allowed to eat fruit at breaktime" (Im all in favour of the whole healthy eating thing which is why he also had his piece of fruit but he also needed the other item to tie him through until lunchtime without any lows) . He was told he could eat it for lunch instead.

As a result of him not being allowed the cereal bar for his break along with the apple he went low, down to 2.0 , was then given the cereal bar that he'd been refused to fix the low, as well as 3 additional biscuits from his emergency box.

Im going to have to go and see them once again, i'll call in on mon morn as this is just outta order and no thought what so ever is being given to the potential damage they could be doing to my son.

Ive also told the wee guy that if hes refused this again then insist that he has to have it and failing that ive told him to get them to ring me. Im nearly asking him to stand up for his rights and insist that he gets what he needs.

anyway, just another grumble frm me folks. Thats 2 in one wk, im on a roll 🙄

take care everyone

sandra

Hi Sandra

Unfortunately this is not unusual as well. Lots of schools have this policy and its great but not for our kids. On MDI apart from bananas or grapes, fruit did nothing to my daughters levels so was no good at all. It had to a cereal bar, we used and still do, the Harvest Chewee as they are 15 carbs so perfect.

This should all be part of a care plan and cereal bars should be in the care plan and the school should adhere to a care plan.

Good luck.

 

[Patricia]

Sandra, just offering support here and backing up Adrienne, who is so experienced in all this...

My son was only diagnosed last year, in his second year of secondary school. And we've had and are having some problems trying to balance out awareness with his independent care, etc...So I fear it never really goes away.

There's a lot to be dealing with. Sorry your school is putting up a fuss. This diabetes thing is a full time job, isn't it?! Best of luck with everything.