help from schools?

lexie32

Member
Messages
8
My son was diagnosed as type 1 diabetic yesterday, our world has been turned completly upside down, he was 5, 11 days ago and due to go to school full time after this weeks half term and the idea was that i would start work working my hours around his school hours, i am now assuming that this is no longer possible as i will be having to go back and forth to the school constantly for his bp's and injections as our school will not even give oral antibiotics. So there is my question 'what help does your school give you and how hard did you have to fight to get it?' i don't want to abandon him but don't want him singled out as the child whose mum is always hanging around and overprotective!

sorry if i am rambleing on my first post, due to lack of sleep and worry!

Alex
 

suzi

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Hi Alex,
Never appologise for rambling, the Mum's of diabetic children on the forum know where your coming from and i hope we can all be of help to you. The first thing you need is a big ((hug)), we've all been where you are now and understand all the emotions your going through. My son was 7 when he was diagnosed and is 11 yrs old on Monday, things get easier and your always learning new things with diabetes.
Regarding school, i suggest you make an appointment with the head of school and his new teacher, along with your sons DN and go in armed with imformation, it's not as daunting as it sounds, and you may find your son isn't the first diabetic the school has had. They may suggest delaying his entrance into school for a week or so until you get into a routine with his diabetes, it can't do any harm to do so. Don't concern yourself about having to go into school to do his bs and injections, it has to be done, and nobody will think your being over protective ect.
Andrew was lucky at school when diagnosed, his teacher's husband was T1 and she was so well educated in diabetes that it took a lot of the worry from me. the following years teacher was a nightmare, but eventually Andrew was able to deal with it all him self, he grew up fast. On the whole his school has been very good, and its only in the last year that he has had to do an injection in school, he started doing his own injections when he was 8yrs old.
Take care,
Suzi x
 

cugila

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Hi Alex.
Welcome to the forum.

As you have already found we have quite a few Mum's on here and Dad's in similar situations to yourself and your son. Suzi being just one of them.

I knew a lad who was diagnosed at birth and he throughout his life was stoical and took everything that Diabetes could throw at him. He never let anything get him down, in fact he was the life and soul of any event. When he started school he told his Mom he was big enough to look after himself and that is just what he did, every day. Mom, mind you used to hover around him all the time. Isn't that what Mom's are for...? He is 45 now, with his own family and living life to the full still. So never think that Diabetes is some sort of curse, it's just another of life's 'curved balls' which I am sure you both will cope well with.

This forum will offer you much support and guidance from others.
 

SophiaW

Well-Known Member
Messages
1,015
Type of diabetes
Type 1
Treatment type
Pump
I send my ((hugs)) too, it's quite a shock coming to terms with the diagnosis and at the same time taking on board all the information everyone downloads onto you. There's a lot to learn in a very short space of time. It will get easier as things fall into place and a routine sets in.

My daughter was diagnosed at the age of 4, it sounds like about the same time as your son, she had started reception year in the September and she was diagnosed in the October.

Our school on the whole have been very good about Jess' diabetes. We did have one teacher who we were not very happy about, that was her reception year teacher but after talking to the head and raising our concerns we never had a problem with that particular teacher again. Some years Jess' diabetes has been looked after primarily by the TA and other years the teacher seems to take full responsibility.

So far Jess has never needed staff to do injections for her. Initially she was on a pre-mix insulin which meant an injection in the morning at breakfast time and then nothing until the evening meal. It worked okay, it was nice in the sense that there was no injecting to be done during the day, but the down-side was that she HAD to eat lunch spot on time otherwise she went hypo. Now that Jess is on a basal/bolus regime I go into school to give her lunchtime injection. The school did offer to do that for me but I prefer to do that myself until Jess can take over on her own. I work from home and our school is only a 5 minute walk away so I can nip out at lunch time to take care of that. If I'm not able to do the injection then my husband works very locally so he can take a bit of time out of lunch to get over to the school to do the injection.

Jess is 8 now and we've never experienced a problem with me being there in school for Jess, no children have commented about me being around at lunch times and Jess loves seeing me in the middle of the day. I do help out occasionally at school on activity days so it's not unusual for children to see me or another parent in school. I think most primary school aged children are quite accepting about how things work. I suppose when she's older she won't want me at school but I'm hoping that by then she'll able to do the injecting herself.

Blood sugar testing has always been quite easy. The staff at school were very happy to do it and it wasn't long before Jess could do it herself. We always ask staff to check with her what the reading was incase it is low and for some reason she hasn't been able to communicate that.

Our diabetes nurse has visited school a couple of times now to talk to teachers and TA's about diabetes and how to manage Jess at school. She was especially helpful in the first year when I was still learning a lot myself, having the nurse to explain things well and to be able to answer questions I possibly didn't know the answer to was very useful. When she has visited the school they have included a number of staff members in the meetings. Usually two or three TA's and one or two teachers, although think of it now I'm sure they were all first aiders too. It's so that if a member of staff is away or not available there are others in school who know about Jess and how to managing things.

There is another thread in this board where I have posted a link to an australian website where they have a booklet available in pdf format. I printed that off this year and have given it to Jess' teacher as I feel that it explains T1 diabetes so well and is particularly aimed at providing information to schools. I hope that someone in the UK will produce something similar.
[see: http://www.diabetes.co.uk/diabetes-forum/viewtopic.php?f=16&t=8947]

I've read that some schools are better than others with managing T1 in school. My only advice is that if you feel the school aren't being helpful, your best bet is to try and get the Headteacher and the SENco on your side, I think without their help you are fighting a losing battle.
 

hennypenny

Member
Messages
11
Hello i realise looking at the dates of this your son will have started school for the last week. my son started in this Sept just after his 4th birthday. he was diagnosed last Sept just as he started nursery. I really was just wanting to say don't worry if the levels are a bit all over the place. the impact on starting school on Ethan's diabetes was unbelievable and nothing could have prepared us for it. he is now absolutely fine but the first month was a nightmare. a very big shock to the system for his school as well. The other children are all very accepting of his condition and after quite a lot of initial interest none of them bat an eyelid at him having his "finger pricks" or injections or eating a biscuit when he needs to. that is just what he does.

His TA is the main care giver at school and if he feels himself going low (tummy hurting) he just interupts her and she will just check him regardless of what she is doing. they check his BG mid morning, lunch and mid afternoon and any other time needed, such as before PE or if he feels low or high. if they are concerned over anything they ring me. I am very fortunate as i am self employed so i juggle all my work around ethan and school so i can go back every lunch time and i am there for outings and such like. i have found that i volunteer in his class when the TA is away as 1 teacher to 27 4,5 and 6 years olds is a lot but that is probably me being over protective. After living at the school, for the first 3 weeks, things have changed beyond belief. i was ready to delay him starting school until next year but now realy glad i didn't, the school is coping well and ethan is just loving school so much. it is difficult to picture how it will be until you are doing it and living it and then you realise it is not as bad as you imagined.

Ethan's nurse went into the school to train them up but i have found that there is so much info to take in it takes a lot of reinforcing so i always make sure i'm in school early to go through things with them such as on PE days just confirm they will check him before PE and give him a biscuit and check him after as they do forget sometimes. I also ask that they write everything down no matter how small. he came home quite high one afternoon and then found out they had been doing taste tests and ethan had been trying various fruit juices. it's a steep learning curve for everyone, but now his teacher just tells me everything they will be doing so there are no problems.

I am sure a lot of the other mum's think i am neurotic or one of those awful pushy mothers as i am around the school so much but i know every child in my son's class and i have an insight into school life that i never had with my daughter. if someone brings a birthday cake they have it at lunch time instead of mid afternoon now. i do find i am constantly running around checking the lables on food all the time and do things like check party bags so i can replace the sweets with sugar free ones (buy them on line). i take him a few sugar free sweets or alternative prizes to parties so if he gets lots of sweets i can swop them. mind you half the time i want him to eat the sweets as he is running around so much he needs them.

We also found bribery helps enormously. we have an injection chart so if he calmly lets us inject with not a lot of fuss he can move a space. takes a couple of weeks to get to the bottom and then he gets a prize, something only £1 or £2 but it works really well. Hope you have a good 1st week at school, it does get better at school and generally in life. Good Luck with it all. Rosie
 

lexie32

Member
Messages
8
Thankyou all so much for your advice, sorry for not replying before but everything feels a bit raw at the moment and we are having issues with ill in-laws ontop of everything with Ben.

Ben went straight back to school after the half term for half days then this week he has been going full days, we have arranged until staff can be fully trained next week that i will pop in at 10am and check his b/s level and then go in at lunch for his b/s and insulin, the staff will take over checking the b/s level from the end of next week to give them all a chance to accompany me for a week and then they will take over his injections after xmas, i am so pleased that the school have been so posotive and helpful and my diabeties nurse is really good too. There are 6 members of staff being trained including the head for doing his injections and for safetys sake there will allways be 2 of these members of staff present at a time.

Luckily apart from the first 48 hours of being diagnosed Ben is being great about his injections and is being really good about his food, we were lucky as we have not had to make too many adjustments to his diet, if anyone has any advice on diabetic sweets/ lollys it would be greatly appreciated


Alex
 

leggott

Well-Known Member
Messages
533
Hi, That's great news. It does get easier over time. I have 2 children both diabetic, ages 5 & 7. The school have been fantastic taking over their blood tests and injections. My son only started in September as well and even though my daughter is at the same school and they've been managing her, it was still hard when my son started. Like you, for the first few weeks I went up to test and inject, but now the school do it all. At the start I would worry all the time and panic if the phone rang, but now I'm pleased to say that I don't worry at all and everything has been fine. Mine usually have a small amount of fruit mid morning to tide them over until lunch and if they think they are low they just go to the office for a blood check.

I find homemade popcorn a good low carb snack. It's cheap and easy to cook and even their friends love to have some when they come round to play.

Leggott.
 

hennypenny

Member
Messages
11
Hi, i buy sweets on line cola bottles, jelly sweets and chewit type ones. they are sugar free but not carb free so still tend to keep them just before or with meals and have to limit it to max of 3 or 4 in one go as they are full of sweetners which cause the runs. but still for a special treat they can make all the difference so ethan doesn't feel he is missing everything. sugar free polo's can be bought in shops and it is a bit of a waste of money but occasionly my son just wants to be like his sister and buy sweetsin a shop but it is definatly max of 2 as they really can cause the runs. i think i have about 4 packs now in the cupboard each with a couple of polo's gone. and like mentioned before homemade popcorn, particulary good for taking to the cinema.

hope thing's are still going as well, i am still going into school every lunch time, as my son refuses to let is teachers do his injections. Rosie
 

cm1976

Member
Messages
16
Hi there

I hope things are going OK for u both - in the very beginning its a bit like ur constantly running up hill with no sign at all of the horizon!!

My son started school in Sept04 and was diagnosed Mar05...

Our school wldnt do his bm's Which quite irritated me as they claimed it was due to blood risks however they wld clean a cut if someone fell on the yard!!! which is more blood if u ask me! anyway.... I was lucky in that my son only has 2 injection a day so I dont have to go to the school to do these at lunch (he has his bfast and tea) and the consultant said that until he cld do his own BM it wld be ok to leave out the lunchtime one as long as we did it weekends and school holidays...

As far as hpos were concerned I just told school that if he showed signs or said he felt low they were to treat him unless they were prepared to learn how to do his BM to check his levels...

It did cause a few probs as far as his levels were concerned as there were times they gave him sugar cos they thought he was low but he clearly wasnt frm his levels at tea!! but rather that than them ignore it and not give him sugar if it was needed!

I did have to ask our diabetic nurse to go to the school and do an awareness session especially after having issues with supply teachers NOT ALLOWING him his afternoon snack !!!

In all fairness we have been quite lucky at our school as they have been very accomodating with his needs - He's allowed to go into lunch early (with the infants - he's juniors and gets to take a friend) he has chocolate b4 PE and has an afternoon snack whereas rest of school dont... The have also done a fact sheet to put around all areas of the school on how to treat hypos with H's mugshot on it!

I just found constant nagging was the order of the day and putting certain teachers straight when they accused my son of making up the fact he felt low so he cld have chocolate grrr!!!! Who cares tbh.... even if he was which he wasnt!! really irritated me as they werent prepared to test his sugar to check but happy to accuse him of lying to ALL just ring u

Hope it goes ok for u
x