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DS11 - newly diagnosed, new school, bad combo!

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H

Hopscotch

New Member
Relationship to Diabetes
Parent of person with diabetes
Hello all, I am new here. My DS 11 was diagnosed 6 weeks ago. I think we have both managed to get our heads round the essentials, and he is doing very well with blood sugars between 5-8. He has taken to it extremely well, is using snacks to exercise and dietician has now started to introduce carb counting with a view to going on a pump (which scares me!) soon.
His new secondary school however has been a complete nightmare. He has been told "To put that snack in the bin now!" (supply teacher) "get out of my lesson with that snack" (prior to exercise) "Why are you having a snack you just had lunch not so long ago!". (He has always explained he is diabetic & has medi alert bracelet and diabetic ID card). I have had "perhaps he would feel better at the local comp with 5 other kids with diabetes where he would fit in better!" (It is a state school but has very small catchment). He has even been told he shouldn't be testing (before rugby) and shouldn't have had his injection (when his blood sugar was 14). Thankfully he ignored this "advice".
I have tried to resolve things amicably, dropping hints that I know a fair bit about equality law,but am at a loss to know how to resolve it. I had a meeting the other day with deputy head but their attitude is always defensive, never understanding and they even suggested that he should eat fruit instead of cereal bars for snacks, although the dietician said cereal bars were better at school. He is becoming very demoralised. Thankfully he has stood his ground and eaten the snack but is so fed up of the whole thing and has started to say he feels sick and has stomach ache. I took him to GP who said he was fine but that I need to address school excluding him around snacks. Does anyone have any advice, or am I just being an over anxious mum? I cannot sleep for the worry of it and I dread sending him back there after half term.
Thanks
 
Hi Hopscotch, welcome to the forum 🙂

I don't think you are being over-anxious at all, personally I think this is intolerable and inexcusable! Have the school considered the implications of him having a severe hypo due to their neglect? Has his DSN visited the school to talk to the staff? This is particularly terrible given that he is so new to things and has clearly been doing his best to get to grips with things - such reactions to his diabetes will surely only make him feel different and resent his condition, which is unforgivable :(

I'm not a parent, but we do have some very experienced parents here who will hopefully be able to help you out. He certainly shouldn't have to move schools away from his friends just because of this. You might also wish to look at the Children with Diabetes site - there are lots of very well-organised parents there, many of whom will have experienced similar problems.

I hope that this can be resolved quickly, for your son's sake 🙂
 
Thanks Northerner, it is really helpful to hear your point of view as that is what I suspect is going on for him, hence why I took him to the GP.
The DSN came in to school initially and went through everything, however they seem to be changing everything that was agreed. They said in our last meeting that he should manage his own hypo's (which he does), and only needs an adult there if it doesn't come back above before 4 after glucose tabs. When I pointed out the health care plan clearly stating that he should never be left alone when hypo, they said the health care plan was too long and "no-one would read it!". It is the standard one we got from DSN. I think they are cross because I phoned the Deputy Head when he was left alone in a building when hypo. They are now saying he is over anxious (and implying that I am too). The standard reply is always that they know about diabetes - they have been dealing with it for 30 years! The final straw was last week he was instructed (never asked ) to take off his medic alert bracelet for swimming??
 
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Hi Hopscotch, welcome to the forum. I can't add much to what Alan has said, though it does seam the school is paying little or no service to help kids manage and maintain their diabetes control.

I would be very tempted to take this above the school level and raise it as a complaint that they could be putting children at risk due to their ignorance or could not give a toss attitude to the children's welfare, while they are in the schools charge.
 
I don't think you are being over anxious. You are being a loving and caring parent. My daughter has IBS and it can sometimes come on very suddenly. When she first started high school I went up to the school and spoke to the head of year about it and my daughter was given a toilet pass. Then I found out that sometimes when she needed to get out of class to go to the loo some of her teachers were saying no or telling her to wait till the end of period. So, I e-mailed the headmaster and sent him a strongly worded email telling him that when my daughter has a flare up of IBS she needs out of class immediately or she will be left in a lot of pain if she has to wait. I pointed out to the headmaster that she works hard in all her classes and only uses the pass in genuine circumstances. She's now getting out when she needs to. So if I were you I'd be going to the head not the deputy head. Your sons health and safety come first and he shouldn't have to change schools just because his current school can't be bothered making sure they're doing right by him. It's a shame that he is trying to manage as best he can but being brought down by the very people who should be supportive to his very genuine needs. I hope you manage to resolve it 🙂
 
Hi Hopscotch and welcome to the forum 🙂

This issue with the school must be very frustrating and upsetting for you, it sounds terrible:(

What is needed is a comprehensive Care Plan for school devised by yourselves with the DSN. It needs to cover the appropriate actions for any potential problems your son may encounter in his classes, at break, lunchtime and PE, also any away from school outings. It should also cover the essential equipment he may need to carry or have in class with him. The Care Plan has to be read by and adhered to by all and it will create consistency between his teachers and their responses. My daughters care plan is several pages long, and we still occasionally add to it here and there as new things occur or we decide something should ought to be documented in there. Rather than your son having to defend his actions he can refer the unreasonable teachers to his care plan.
If they continue not to adhere to it then I would personally consider making an official complaint.
 
A job for the School Governors AND I should enlist the help of his DSN.

Plus, would you PLEASE contact Diabetes UK Careline, RIGHT now?

They are currently trying to draft and put forward a 'universal' care plan for school children, with the backing of the Government, that every single school would HAVE to adhere to. Not 'when they can be bothered' !!!
 
Hi Hopscotch

It really makes me mad when schools behave like this. We've unfortunately been there with our daughter's previous school, at the age of 5, refusing to carry on with her care (even though they had done it for 6months in reception) and told us she needs to be independent and take ownership of her diabetes for year 1. She was excluded from school for 5 weeks before we moved her to another school who were fab. It made me determined to get things changed and along with 2 other parents, we went to Essex County Council and depsite getting the door shoved in our faces, we finally worked with them to produce the Essex Protocol for children with diabetes in schools. The protocol is at the bottom of this link: http://www.childrenwithdiabetesuk.o...orting-pupils-with-diabetes-in-essex-schools/

Children with diabetes are covered under the Equality Act and the school should have a DED policy which shows how they are making reasonable adjustments for a child with a disability, in this case diabetes. A child should not be treated less favourably because of their disability.

Diabetes UK and JDRF will strongly advocate that your child is being treated less favourably.

Taken from the Essex Protocol:

"Snacks
Some pupils with Type 1 diabetes need to eat at regular intervals. Missing a meal or snack could lead to a low blood glucose level requiring emergency treatment. Whilst the child will normally do this at school break times, there may be occasions when a snack will need to be taken during lessons. This may be particularly important before P.E. or during times of stress e.g. exams. If a child with diabetes asks to eat during a lesson this should be accommodated. Under no circumstance should a child be refused or told off for this request."

Diabetes UK also state this.

Has your DSN been in yet? Does he have a care plan? If he does have a care plan the school could be failing to observe this and therefore invalidating their own insurance.

What area of the country are you in? Each region has a paediatric diabetes network and your co-ordinator may also be able to help with this issue.

If you want to PM me, please go ahead, also if you are on FB I can add you to a group that about T1 rights in schools - its a fab resource.

If I can help in anyway, please shout xx
 
East of England School Protocol/National Protocol

I mentioned above about networks. The East of England Paediatric Diabetes Network has produced a protocol for schools. They are taking it to the Department of Education for them to make it a national protocol. I can't attach it as it exceeds the KB limit but i can happily email it on to you?

This is the section on sports:

"PE, Exercise and Diabetes
Physical activity is vital for all children and young people and this is also true for children and young people with diabetes. Exercise of any kind increases the use of energy and therefore children / young people with diabetes are likely to see a drop in their blood glucose level. Therefore the child/ young person may need additional carbohydrate before, during or after sport. This should be documented on their IHCP. It is important to note that for some children / young people, exercise also includes running around at break time or long periods of walking between classrooms.


Pupils with diabetes should be encouraged to check their blood glucose level before exercise, if they are going swimming, or the activity is strenuous or prolonged (more than 45 minutes). High blood glucose levels (above 14 mmol) may make it dangerous for some children to participate in certain activities ? this will be documented on their IHCP.


It is important that all PE staff know the signs and symptoms of hypoglycaemia and how to treat it. It will also be necessary for staff to carry ?hypo treatment? out to the lesson at all times.


Important points to remember?
Children and young people should be encouraged to test their blood glucose level before taking part in PE and activity.

The child?s IHCP may indicate an ideal blood glucose target range in which the child / young person can safely take part in the activity.

All children / young people with diabetes should have swift access to hypo treatment no matter where the activity is taking place. For young children, the teacher or support staff should be responsible for ensuring this.

Children and young people using an insulin pump may need to disconnect the device during the activity and reconnect once finished. The pump should be stored in a secure place if disconnected. This may need to be checked by a member of staff and should be documented in their IHCP.

The IHCP will document whether the child / young person will require additional carbohydrate via food or drink. This may be related to their blood glucose level, or may be a ?fixed? snack.

Some children will need an adjustment to their lunchtime insulin dose depending on when the activity session is ? this will be documented in their IHCP.
 
Wow! Thank you all so much for your kind words and advice. I was beginning to think I was going mad - it is all so overwhelming in the beginning, as you know, that this added extra stress is incredibly difficult to deal with. Both him and I have been reduced to tears, not through the diabetes but through his treatment at school. I think as he was diagnosed the week after he started there they are treating us as if we know nothing about it.
Becca You are an inspiration and I have read the CWD site. It brought tears to my eyes reading some of the children's letters to their schools. I suspect that my son's school are also treating him as "the kid who ate too many sweets". (He has never been a sweet toothed person!)
Trophywench I did speak to the Careline last week and that was why I arranged the meeting. The Head said it wasnt necessary for my DSN to come to the meeting but then in the meeting they told me that they had spoken to her and she was fine with everything! Left me a bit stumped so I think that a letter to the Head is now in order. I may well get my son to write one too, outlining his feelings.thank you all again - I can see this forum is going to become a great support. Becca I will pm you as I would love that FB group and the email.
I feel so bad that he has to deal with this on top of everything else.
 
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Hi Hopscotch sorry you have to be here but glad you found us!- It made me smile when you said they were implying you were over anxious- Mmm at our care plan meeting nearly 2 yrs ago now the school secretary actually said it to my face -I burst into tears and walked out- you will get stronger with these folk honest.I got our team to go back into school and all the staff that taught H had to know that if he needed to test/eat whatever it has to happen- this was because he had gone offsite to some PE lesson and the teacher was unaware-H is older now many a time the teachers think hes got his phone out when actually its his meter! and apologise when they realise -keep strong and come on here to moan if needed
 
Thanks Del bt - it is reassuring, although very disconcerting, that others have experienced the same things. You have inspired me though - no more emotion just assertiveness!

Not sure if I am getting anywhere though as since our meeting the school have now re-written THEIR health care plan! Their main objective seems to be getting him to conform to their rules, and they even suggested he could test separately from his injection, to fit in with their timescales! And that was the school nurse?! I am totally confused now as the school nurse emailed their new health care plan to our DSN without even copying me in. The message is loud and clear - my DS (and I) are not even considered! The health care plan even states that he MUST observe all school rules, ie. Not eating snacks on the poolside. The most worrying thing is that they expect him to manage a hypo alone, (which he can) but that he does not need to report it to an adult unless it DOESN'T come back up after initial glucose tabs. When I discussed this with DSN she said it is only really primary school children who should not be left alone. Can anyone advise on secondary school good practise please because I just feel like I am wading through treacle at the moment. I haven't even addressed the discriminatory comments with school as when I have mentioned them I just get an insincere smile in return!

We had a perfectly good health care plan from the hospital which I signed and gave to them, along with 4 passport photos initially. It was returned with the 4 photos intact! The expression of banging your head on a brick wall has never been more apt!

Any tips greatly appreciated!
 
Hopscotch -this is insane and needs to be sorted. Ask your DSN to arrange another meeting with the school with you present too. They clearly DO NOT understand the condition - If he needs sweets at the bl**dy pool then thats what he needs as will be in the future during exams etc.If the DSN wont play ball speak to one of the consultants -They cant rewrite a childs care plan - its your child! and the photos are supposed to be on the care plan visible in staffrooms etc
 
Hi Hopscotch,

Well I am very angry on your behalf! How dare School write your childs care plan - what experience do they have with your childs diabetes? I am really shocked that your DSN isnt backing you up either. Not being able to eat a snack is dangerous and School need to be reminded of the possible consequences of not allowing your son to eat to save his brain from brain damage! I will try to find some links to help you but you really dont have to accept this nonsense - your son should be included in everything - not punished for having a life-threatening medical condition!😱😱Bev
 
Hi Hopscotch,

I dont do Facebook but a friend from CWD has suggested you contact them here 'T1 Children - Rights at School'. Do try and contact them as they are experts and have lots of experience in dealing with difficult Schools.🙂Bev
 
Hiya Hopscotch

I'm so sorry you are having these problems. It is awful that this still goes on. I totally and utterly agree with everything Becca has said.

I don't know if you are aware but at the moment in the world of paediatric diabetes there is massive change happening, its been happening for a few years but there is potentially a lot more money involved and this is spurring some (should be all) teams to be more proactive. Part of this is care in schools as well. There are a few protocols around the country in different areas which are supposed to be used. The Essex protocol is the latest one and is excellent. Where are you in the country. If you don't want to announce it on here then maybe you could private message me.

The country has been divided up into 9 or 10 network areas and there are parent reps per area who sit on networks with the consultants etc etc. There are fb groups for a few of the areas, the rest are coming soon and you may well be under one of the areas already up and running. If you let me know where you are I can tell you if you fall under any of those ones. There will be others under your team who can tell you their experience of the team and whether they have helped in schools or not. That is a good start.

They should no way be changing the care plan. The care plan is to be written by you and your team not the school. It is there for the safety of the child and the school are not medical experts and paediatric diabetes is a specialist subject.

Its always best to be 'friends' with the school as you get far more out of them having a good relationship but if it has gone beyond that then you need to get tough with them which is crazy but needs must. Your poor boy, I feel so sorry for him.

I do dip in and out of this forum, I love it but am sooooo busy and I always look but don't always post but just in case you wonder if you should tell me where you live then some of the others can vouch for me 🙂
 
Hi Hopscotch and welcome,

You've had lots of good advice already. Stick to your guns on this one, your son deserves to be supported in school with his diabetes, and if the school are dragging their feet, you have to advocate for him. If this means you get a reputation as an awkward parent, so what?! Most of us parents have been in that situation, where you can see the Head's eyes rolling heavenwards whenever you approach them! Your son has a fundamental need and right to eat a snack whenever/wherever he needs to, in order to prevent a hypo. If school objects, ask them if they'd prefer him to collapse unconscious on the spot, or is that against school rules too? Time to get cross I'm afraid. Hope you get somewhere with them (make sure your DSN is onside too).

P.S. I can vouch for Adrienne! 🙂
 
May I suggest you ask the head master to give your boy a laminated credit sized card to show staff.

My friends T1 boy has one that says basically...

School logo.

xxx is diabetic. xxx has to keep his blood sugar within safe levels.

xxx is allowed to test his blood, inject insulin and eat in class.

xxx's "diabetes buddies" are yyy and zzz and know how to help xxx if he is unwell.

He shows the card to teachers and points out his "buddies".

I hope this helps.
 
Thank you all so much - it has been a great relief to find you all. I am now a proud member of the FB group, the CwD newsletter and emailing Becca and Adrienne so you have all been tremendous.
I have drafted, and redrafted x10 my letter to the Head! I don't want to get off on a bad foot but as Redkite says better me being in the bad books with school than him being ill.
Brightontez - I love the card! He does have the standard diabetes card but will definitely suggest that one. He does have a buddy now after I suggested it, and the buddy has even had to intervene and tell the staff that he needs to do his stuff before lunch!
So, off to finalise my letter as it's back to school tomorrow:-( We have had a lovely relaxed half term - no hypos and he's already carb counting as he wants to get on a pump ASAP so he really has done very well. I am very proud of him - thanks again everyone - this is a fab resource!
 
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