DS11 - newly diagnosed, new school, bad combo!

[Northerner]

Good to hear, I hope that you finally get what should have been in place from the start 🙂 And very well done to your lad for coping so well! 🙂

 

[Hopscotch]

Well, sent my email at 10.00 and got a reply by 12.00 saying the Head's secretary would call me to arrange a meeting! Amazing what putting it all down in black and white and then copying in the DSN can do;-)
Now to prepare for the meeting. I must not get emotional. Stay strong. How do others do it?

 

[Northerner]

Well, sent my email at 10.00 and got a reply by 12.00 saying the Head's secretary would call me to arrange a meeting! Amazing what putting it all down in black and white and then copying in the DSN can do;-)
Now to prepare for the meeting. I must not get emotional. Stay strong. How do others do it?

I'm not a parent, but have learned since my diagnosis that you just have to stand your ground, especially when faced with people who are trying to tell you what will happen when they know far less than you. You know you are right about this, and you know how important it is, especially to your son but also to your whole family so you don't need to worry (quite so much, I know parents will always worry!) when he is out of your sight.

Hoping all goes well and they see sense! 🙂

 

[delb t]

Well done you! can you get some-one to go with you? can one of the DSNs go.... if not
1- have bullet points written down
2-have your original careplan and theirs and calmly explain why he has to test/ adjust/ snack/ treat etc at the time he needs because medically he need to- not to fit in for the school timetable!
3-all of the teachers/supply/ lunchtime supervisors etc have to be aware of his condition and the care plan + photos up visible in staffroom
ALSO- extra attention after PE/ SWIMMING/ RUNNING
4-say that you will get a JDRF- SECONDARY schools pack sent out to them{order one free from the website]
5-Say that you want to work with the school to get the very best for your child and your sure they would want that too !-say its a condition that many do not have knowledge about but the fact is medically he has to treat himself when he needs to ! not at break or the end of lesson!!! because he could become quite unwell/quite quickly
6- say your son has behaved in a most mature manner following his diagnosis and you would like the school to acknowledge they have a duty of care to help him stay well and achieve
..........thats for nowI will keep thinking!

 

[Hopscotch]

Well have got my meeting set up for next week. I am preparing my list - thanks Delb t that is so helpful, and will also suggest the card. It is so reassuring to hear you all confirming what I have been thinking when they treat you as if you are just a neurotic mum! I guess as we get more used to this, my confidence will grow. We also had first appointment with clinical psychologist who was appalled by what we told her. She has said he MUST have the emotional support from school, and also when hypo his cognitive part of his brain doesn't function so they MUST help him, ie. not being able to find his hypo kit etc. she is writing a letter to that effect, so I feel quite well prepared.
Thanks for all your support. Ironically, he is having a great week at school, no issues so all good. But I guess if that's what it takes, then it's all worth it!

 

[fencesitter]

Hello Hopscotch, just read this thread late in the day and wanted to say well done for sticking to your guns. Sounds like you're well on the way to knocking some sense into your school, how horrible that you've had such a battle on your hands. I think we were so lucky. William's first secondary school couldn't have been more helpful - we had a team meeting the day he returned after diagnosis with pastoral care people, school nurses and so on to agree a care plan. Never a problem with snacks before sports. Once he did have a teacher tell him off for eating jelly babies in class (huge school, 1200 pupils so easy to forget I suppose) but as soon as he explained she backed off and apologised. Now he is at a very small school (150), several key staff sent themselves on a course for caring for a child with diabetes and put up a big poster about managing hypos where everyone could see it. I'm very pleased there are moves to have a proper strategy/protocol for all schools to follow, sounds like many of them need it. Good luck with your school, I'm sure your efforts will pay off.

 

[Hopscotch]

Just when I thought it was safe to go back in...

Thanks Willsmum - it's nice to know that some schools are caring for our children. We had another blow today - got a letter to say that he had been moved down from the top stream in literacy. My DS has always been top of class in literacy so this has been an added blow, so I looked at his diabetes history on his glucometer and discovered, that after Week 1 assessed put in top stream and then Week 2 diagnosed/hospitalised.
After that in literacy: hypo in class on 3 occasions
Hyper in class on 3 occasions.
And..the teacher is one that has been asking him why he is testing etc.

I am also discovering that when hyper his concentration (and patience!) is very limited!

They are an outstanding school, and have a strict regime of moving children every half term to keep them on their toes, which is fine, but Is it really fair to move him down on the basis that he has just been getting used to his diabetes?

TBH I am not so bothered as to which stream he is, because I know that when the dust settles, he will do fine, but I am sad and feustrated about the school's lack of understanding (and compassion!) as to how the diabetes is affecting him, and will do in the future. I am now seriously wondering whether a school, which I selected because of its discipline, academic results, etc. is the right one for my child if they cannot see beyond their regimented rules and regulations.

I feel totally exhausted - is this yet another dimension to this illness that we have to endure? Feeling very sad about it all tonight..

 

[trophywench]

Well I still think you ought to approach the Governors and tell them about it.

They have a responsibility for everything that happens or doesn't happen in 'their' school !

 

[Northerner]

...TBH I am not so bothered as to which stream he is, because I know that when the dust settles, he will do fine, but I am sad and feustrated about the school's lack of understanding (and compassion!) as to how the diabetes is affecting him, and will do in the future. I am now seriously wondering whether a school, which I selected because of its discipline, academic results, etc. is the right one for my child if they cannot see beyond their regimented rules and regulations.
..

Well, I suppose there is an extremely slim argument that he might learn that his diabetes should not be used to excuse any problems he may have (note that this is NOT an argument I would support!), but so soon after diagnosis is really very harsh and I doubt that even enters their reasoning I wonder how the teacher would function if, every so often in class, they were soundly struck around the head with a cricket bat, impairing their abilities, until they learned in time how to dodge the cricket bat? Would a child with any other, but more visible illness be treated in the same manner?

They clearly do not comprehend the enormity of what your son is going through and having to deal with - they should be impressed by how well he is doing, not penalising him

 

[Hopscotch]

Thanks Northerner, your analogy is a good one and it helps to understand exactly what is going on for him.
Trophy wench - I see what you mean but I really just want to get things sorted out for my DS, and am trying to keep things 'amicable'. Will definitely refer to Governors if there are any more incidents though.
Meeting tomorrow so will let you know how it goes - your support has been a huge boost in helping me plan my approach.

 

[trophywench]

Err, how will the Governors know there are problems if no-one tells them? Up to now the school clearly don't think they have a problem - what else are they doing wrong and who else are they gonna do it to?

 

[Hopscotch]

Sorry about delay ..just wanted to update all you kind people as your sound advice and recommendations paid off.

We have agreed a careplan, as per my instructions and school nurse has trained essential staff. They have moved DS to tutor group with T1D tutor and it has been great for my DS to speak to someone who can offer some real support, and thoroughly understands it. He knows he can speak to tutor if any issues. Head has also written to all staff explaining cognitive fluctuations, and they will keep an eye academically.

My DS is thrilled to have changed group and already feels more comfortable, and I feel 100 percent reassured. I hope that our good news story inspires others to persevere - I did feel I was banging my head against the wall initially and my advice would be go straight to the HT as soon as any problems arise.

Not sure I would have coped so well without all your support, so huge thanks.

 

[Hanmillmum]

So pleased for you and your son that the issues at school have been sorted, your son can go back to getting on with his studies like all his peers 🙂🙂

 

[trophywench]

Oh that's totally brilliant!

I wonder if any of em had read the news that they are amending the Law to FORCE schools to make proper allowances for all disabled kids? LOL

Perhaps the T1 tutor mentioned it en passant?

 

[fencesitter]

Wow, what a great result 🙂 well done for your persistence, certainly paid off!

 

[Northerner]

Fantastic, brilliant news! So pleased for you and your family! 🙂

 

[Pumper_Sue]

Sorry about delay ..just wanted to update all you kind people as your sound advice and recommendations paid off.

We have agreed a careplan, as per my instructions and school nurse has trained essential staff. They have moved DS to tutor group with T1D tutor and it has been great for my DS to speak to someone who can offer some real support, and thoroughly understands it. He knows he can speak to tutor if any issues. Head has also written to all staff explaining cognitive fluctuations, and they will keep an eye academically.

My DS is thrilled to have changed group and already feels more comfortable, and I feel 100 percent reassured. I hope that our good news story inspires others to persevere - I did feel I was banging my head against the wall initially and my advice would be go straight to the HT as soon as any problems arise.

Not sure I would have coped so well without all your support, so huge thanks.

Fantastic news so pleased for you and your son.

 

[delb t]

Yeyy... fab result