Is diabetes a "special need"?

Advice on Special Needs and the 11 Plus Exams

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ginx
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Location: Warwickshire

Is diabetes a "special need"?

Post by ginx »

My dd sits the 11+ on 8 September.

She was diagnosed 2 years ago and is now on a pump. She mostly has high blood sugar levels. Her schoolwork is fine and unaffected - I think - but then she comes out with comments like "during our exam I felt really shaky, but didn't like to tell the teacher" and when she tested after the exam, she was below 4 (technically a hypo, in reality she just has to have dextrose quickly). I can't believe this improves her results. To make sure she doesn't go low, we will give her lots to eat; this will probably make her high, together with the stress of the 11+, and she will feel unwell. Not ill enough to miss it, just gives her a headache and makes her feel sick.

I guess it's just a no win situation. We can't stay during the exam and she is sensible enough to get through the first half and have a snack.

Just wondered if anyone else has had a diabetic child sit the 11+ and if all was ok? We're probably just paranoid parents. Would love to hear from anyone with experience.
Rob Clark
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Re: Is diabetes a "special need"?

Post by Rob Clark »

Hi ginx, yes both mine have Type 1 and use pumps (though they were still on injections when they sat the 11+), DS going into Y12, DD into Y10 next week.

If you want my honest answer, I don't think schools have the faintest idea what managing Type 1 diabetes really entails or how to deal with it. Although we haven't had any disasters at school, nor have we had anything much in the way of support or understanding, and both DCs go high in the lead up to and during exams. My advice re. 11+ would be to get your daughter to do loads on tests the day before, the day of, and the day after and log/chart everything as this can be useful at appeal should you have to go down that route. You also might be able to apply for extra time, it's worth talking to your education authority. As you rightly say, anything under 4 is a hypo and medical advice is that it takes 20 minutes to recover from a hypo in terms of concentration levels.

I don't believe Type 1 diabetes is considered an SEN, but it is covered by disability legislation and schools are required to make the necessary arrangements to ensure no discrimination takes place, whether it's a concert, a school trip, a sports match or an exam.

I hope it all goes well for her.
scarlett
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Re: Is diabetes a "special need"?

Post by scarlett »

Does your daughter regularly see a diabetic nurse specialist ? May be useful for advice ( although I'm sure you are the experts ! ) and if needed to talk to the school re taking her kit in with her and as Rob says perhaps some extra time if not for the exam , but before hand to test her levels and act accordingly .
ginx
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Location: Warwickshire

Re: Is diabetes a "special need"?

Post by ginx »

Hi Rob Clark and scarlett

Thanks for your replies. Rob Clark, how do you cope with two with Type 1? It's bad enough with one ... thanks for the tips about taking lots of readings the day before, of and after. Our dd is actually very fast (mixed blessing) and probably only has a tiny chance (although who can say they have a "good" chance), but it would be awful if she had a hypo and was unwell. As you can probably understand, it is scary enough leaving her in a strange school to sit the exam, but leaving her with invigilators who don't know her (are any first aid trained?) is worrying for everyone. Having said that, I don't think my dd is worried.

Her school currently leave her to it, it seems to me. They've coped well on two residential trips, if she feels unwell in the day, she "leaves it till the end of the lesson" before going to prick her finger and get dextrose. She is embarrassed. I just hope she doesn't leave it till she passes out! Secondary school will be a whole new routine as she will cycle wherever she goes, and have a different routine.

Did you ds going into y12 have extra time in his GCSE's? Was he ok?

You're right about one thing; I don't think schools have the faintest idea about Type 1 diabetes. Thank you ever so much for your advice. Scarlett, my dd is allowed to take her kit in, no mention of testing her levels. That will be up to her to decide. I just cannot for a moment imagine her putting her hand up in the middle of an exam, with kids she doesn't know, in a school she doesn't know, to say that she feels unwell. She just won't do it. We will give her lots of food so she will be high, and hope she does not feel unwell. It is all a balancing act with food as Rob Clark probably knows. Many thanks. Diabetes seems a strange "disability". At junior school children with behavioural disorders seem to get more attention than my dd - as if diabetes isn't serious. I am going to contact her nurse tomorrow and will mention all this to her so she is aware and may be able to advise me.

Thank you.
scarlett
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Re: Is diabetes a "special need"?

Post by scarlett »

It's just something else to worry about..for you at least. I'm a paediatric nurse, but am not a specialist in diabetes and I have seen a few nurses baulk at the ins and outs, so goodness knows what schools must be like ! I know it's not ideal, but could she take herself off to the loos beforehand to check in private ?
Rob Clark
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Re: Is diabetes a "special need"?

Post by Rob Clark »

As you can probably understand, it is scary enough leaving her in a strange school to sit the exam, but leaving her with invigilators who don't know her (are any first aid trained?) is worrying for everyone.
We’re in Bucks where they run an opt-out system so everyone is entered for the 11+ unless you ask not to be. This means everyone in county takes the tests at their own school, taking it somewhere else would definitely have added to DC’s stress which usually raises their sugar levels. Under your circumstances, I would certainly ask the question and make sure that the invigilators are aware of her diabetes.
Her school currently leave her to it, it seems to me.
Yes, that’s what ours did. Quite hopeless. I think it’s reasonable by secondary school to expect DCs to handle most of it themselves, but our primary was clueless. HT ‘forgot’ to mention that DD had diabetes despite the fact that she had been using the school office every day from the age of 6 to inject herself. :roll:
Secondary school will be a whole new routine as she will cycle wherever she goes, and have a different routine.
Both my two walk (usually :D ) – about 15 minutes in different directions as one is at GS and one is at upper school. We did give them both mobile phones when they started at secondary so they could call home or an ambulance if a crisis occurs while they are walking.
Did you ds going into y12 have extra time in his GCSE's? Was he ok?
He had the facility for requesting it if he went very high or low but as you say in general they prefer to avoid fuss and bother and like to just get on with it.
Diabetes seems a strange "disability". At junior school children with behavioural disorders seem to get more attention than my dd - as if diabetes isn't serious.
I don’t think people generally realise how serious it is, or potentially is. DD has a particularly unstable form and didn’t sleep through the night between the ages of 6 and 11 without going low. Her consultant told us that she was never more than about 20 minutes away from a fatal seizure. Fortunately, the pump has dramatically stabilised the situation, but it’s still some way from the public perception of diabetes.
pheasantchick
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Re: Is diabetes a "special need"?

Post by pheasantchick »

I think if she has any problem during the tests due to her diabetes, then get a medical letter straight away, to cover yourself incase you have to appeal.
ginx
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Location: Warwickshire

Re: Is diabetes a "special need"?

Post by ginx »

Hi Rob Clark and Pheasantchick

I have emailed Warks County Council who have told me she can leave to prick her finger, but she can eat at her desk.

She is not allowed any extra time for time lost doing this. That seems a little unfair to me. She will be allowed to re-take if necessary.

They told me to speak to the invigilators (shouldn't it be the other way round?) to ask if she could sit near a door, and to make sure they were all aware.

A friendly, reassuring email, but I had expected extra time if necessary (would only be a few minutes).

pheasantchick, you are right and I must get a letter from our diabetes nurse. Fortunately, my dd doesn't feel stressed. I have no doubt she will on the day and that will send her high. As being high just means my dd doesn't feel very well - she would argue she is "used" to feeling unwell - headaches and tummyache - she is unlikely to pass out, and invigilators will not be bothered. It is extremely difficult at the best of times to get a good blood sugar level; during an exam, the 11+, in a strange school, with children and staff she doesn't know ... there is simply no way her blood sugar are going to be normal. Thank you for your help.

Rob Clark, I don't know how you managed with nights; when our dd had an infection recently, she was HI (off the meter) most of the time. No ketones, but our nurse put her on 140% extra insulin. We were absolutely terrified she was going to crash in the night and kept checking every two hours. It was like having a newborn again. She was ok though. The eleven plus is stressful enough without the added stress of diabetes. We are going to stay very near! Good luck with your two. How are the teenage years going?
Ginx
ginx
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Joined: Mon Jul 04, 2011 2:47 pm
Location: Warwickshire

Re: Is diabetes a "special need"?

Post by ginx »

I know I've asked once, but does having diabetes mean my dd officially has special needs - or doesn't diabetes count?
tigger2
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Re: Is diabetes a "special need"?

Post by tigger2 »

Ginx I think that diabetes will not be regarded as a special need but I may be wrong and hopefully I will be swiftly corrected. I agree though with Pheasant Chick I would get a letter from your GP and/or hospital consultant to confirm diabetes and (forgive me I know nothing about diabetes) any possible effect on your dc in stressful situations.
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