realistic chances of a gaining a statement for a 5year old with medical/severe behavioural disturbance

[brandy77]

Hi there

My son has just started his 4th week at reception, full days from this week.

He has a medical condition that requires monitoring and tablets given as and when required, depending on his urine output/thirst. When he is unwell (gets colds very frequently and last longer than usual, so now till march unwell a lot)his medication goes haywire! I had informed the school of this prior to his start and supplied documentation from his paed etc.

As he has a cold now he has gone into school yesterday and his meds have messed up again as usual, this basically means until he has passed urine a few times (breakthrough) he cannot be given a dose of his drug and the school have to ring me to see how much to give him. The school did this yesterday and phoned twice and by 2pm they could finally give him a half a tab. When hes well he generally has a tab before school, half at lunch if needed and 1 or 2 at bedtime.

I left there in tears this morning after i went in early to explain to the teacher that his night drugs hadnt worn off and to give her half a tab to give him when he started weeing/drinking again. She wasnt happy and said she couldnt talk to me and it was more complicated than she thought and didnt have the time! I was gobsmacked and felt my chin wobble straight away Anyway i spoke to the TA who said yesterday had been a worry and took up more time than they thought watching him for loo visits etc.

I left school in tears and then the TA phoned at 9.30 to say he had 3 wees in half hour to confirm to give him the tab which she did.

I phoned the nurses in london and they have phoned the school to explain that this is a difficult condition to manage and can be very variable especially if my son is unwell.

She said the Head was supportive and didnt realise that it would be so complicated with my sons medical needs, so the nurse was emailing her loads of stuff and has agreed to liase with the school from now.

I also came home to a clinical letter from his last outpatients which included his behaviour and his paed states that my son has severe behavioural disturbance (due to the hormone problems probably) and hes referred him to his pyschologist as CAMHS were crap.

So i know lots of you have gone for statments, i just havent got the energy for a big battle, just wondered what your thoughts are really. thankyou.xx

Getting suitable support and /or a statement should not have to be a battle - but it often is. It depends on the lea. Hopefully the school should at least in theory be able to put some support in place without or before a statement is in place. Medical issued may need to be supported by the school nurse service, (they were helpful in putting stratagies in place for a medical problem for our son). I am a bit out of date now, but I wish I had known on ds starting school that I as a parent could request an assessment. Parents have a right to appeal if turned down at this first hurdle - school do not.

Forgot to say the first thing is probably to arrange a meeting with the SENCO (inclusion manager)

Can i ask whereabouts you live? different areas are variable about statementing difficulties.

I live in Notts and its ni-on impossible . But 500yds down the road its s.yorks and its slightly easier

im in kent miscutandstick.

magso, apparently the school he is in do not like statements.

the nurse from london has now emailed the Head to clarify that my sons medical condition is cause for concern when hes unwell as the medication has differing affects. i think the head and class teacher thought i was over reacting, annoys me, cause ive managed his condition for 5 years with the support of the nurses on the end of a phone.

the nurse has spoke to my sons paed and said that im to give him half a tab before school if hes dry overnight and a whole one if hes massively weeing and the school are to give him nothing and to inform me if he has a "breakthrough" and drinks/wees vast amounts. nothing was written in his contact book today.

The Head called me in after school and moaned that i shouldnt do a handover with the class teacher/TA, i should tell her whats happened with his meds. I explained to her that my son will probably be back to normal with the meds next week when the cold has gone and its only been 2 days of them monitoring him. she thought they would be giving him a lunchtime dose but i said no you wont be he will just pee/drink. she said oh thats fine we have plenty of water/toilets, my answer was that it is not pleasant going to the toilet every 15mins and then guzzling water after. im still quite annoyed with them actually. how would she feel peeing all blinking afternoon, oh well. His father (my ex) is ringing later to tell me what hes said on his phonecall to her, he wasnt very happy with the situation at all.

the nurse told them in the email that if he is excessively weeing/drinking then they will have give him a tab in the afternoon, after discussions with myself and the hospital. thank god i phoned the hospital, i didnt think they would phone the school for me.

thanks xx

Hi Brandy
Has your ds got a care plan in place at school to help them manage his condition.
As magso said, contact the school nurse ask for a plan to eb drawn up.
It should identify what actions the school should take & who is responsible for managing his care whilst at school.
It may be before the care plan can be finalised formal training will be required.

It will also identify when they should contact you etc.

You may still needa statement but a good care plan may help you while the proper support is sorted.

hi anonandlikeit, yes i have a meeting on thursday with the school nurse to do a care plan, but if the school arent going to medicate him at present, i dont see how it can help really. like many parents i feel let down by the school when they came across so supportive to start with but as soon as my son needed extra monitoring it seems its all too much for them

Remember, you have the LAW on your side,
A school must by law " make reasonable adjustments" to accommodate a child with a disability. The term disability also includes a long term illness.

If by failing to make "reasonable adjustments" they are preventing your son from "accessing the curriculum" then they are in breach of the disciplinary discrimation act.

If your son cannot be at school without someone monitoring his condition then the school must provide somebody to fulfill this role as a reasonable adjustment.

If they really cannot do this, or refuse to do this then the school must declare to the LEA that they cannot meet your sons needs.
That is not something a school does lightly.

Its easy I know to spout the Law, its much more difficult when its your ds's care they are messing with x