Our DD is 8 has dypraxia, hypermobility & eczema along side a severe nut allergy (a nightmare for a mum of a dyspraxic child as she touches everything!) She is a lovely girl who blends in at school as she is polite, all her frustrations of school are saved for home time bless her :( She has very little understanding of school life as she just thinks of it as play. Her new teacher knows she has many issues like concentration, memory, organisation and as far as writing, numbers and home work goes well its very obvious but the head will not see any 'sen' need at all so we are fighting everything sadly.Right now we have 2 issues with the head, our wanting of 'sen' help for our DD and a need for a care plan for her nut allergy (we had one when she first started sch but then needed to add to it but was told we had to fill in a CAF form to get one as they have no school nurses now. At the same time we have some new things to add to her list of 'please avoid' .... Very intrusive form (wanted to know very personal stuff on my disabilities!) we have found out that 'someone' feels there are 'safeguarding issues' (they feel we are 'pushing' for medication and attention she doesnt need) I had a 'school' nurse from another area ring me and quiz me on the phone for half an hour about what made me feel my DD had any allergies full stop? as 'she has never had to use her epipen' she asked who was with me when a reaction of any sort came up, then said if there was 'evidence' and a 'diagnosis' for every named food or item it would not be recorded on a care plan . She when on to say she had spoken to my DD's pediatrician and said they want to have her fully diagnosed with any food allergies and intolerances before they will be taken seriously, to which he apparently said 'no problem I will get the forms sorted' *I have no problem with testing, BUT it would have been nice to have been included in the choice! also now I know the fruits that she is having issue with arnt on that list anyway so I cant help but think how the hell all that testing is going to help her and the school? There are professional meetings and letters to and from from our doctors & consultants via a school nurse, I found out by mistake at the doctors! I see a letter on file asking for written evidence of all contact they had from us about issues with our daughter etc! We have been told we cant add anything like melon to her list unless she has a formal diagnosis for 'melon allergy' same goes for some plasters that our hospital said she reacts too, but school say they wont be avoided unless each 'item' has its own diagnosis, even our hospital said it wouldnt run tests for melon etc but just to avoid it so why is our school being so horrid? Ive asked a couple of other mums how they have got on with medical things as Id overheard her explaining to the office her DD was 'allergic' to alot of sun creams so she was only allowed to have her own on and to make sure a teacher didnt just pass any bottle to her..... she said 'they were great, just said write it down and we will make a note of it'! Another mum said 'I told the head my daughter was at risk of bladder infections if she didnt drink enough through the day and as she does like water we have to use juice to entice her' Whilst I have no issue with any other mum doing whats best for their child I am starting to feel victimised and hounded :(
If others dont have to have a formal 'diagnosis' why do they keep asking us for something that the doctors and hospital say they dont offer anyway :(( My daughter does have a diagnosis of nut allergy as she has epi pens at school but there are times when new foods cause reactions and even if not life threatening should still be avoided where possible. I did ask for the list of what the hospital can check for but like I say some of the ones we know make her ill arnt on there to test, so you just keep going round in circles! Oh and in the easter holidays we had a letter from the school saying the outcome of the MAGGS meeting was our DD had to 'get out more without mum and dad'!! erm ok so whos gonna make sure she doesnt eat anything with pnuts or fall off the top bunk (as she has no fear at all) she needs someone to be able to spot the signs of any analytic reaction and be able to administer her Jest pen? The answer they say? A support worker! Well, erm ok, I do worry about safety (in my eyes its my job) who are they where are they and who pays? Theres a list, they can be dif ppl and you pay! So I want a school care plan and I get told my DD needs to get out more and I have to sort and fund it ? lol F Off! Sorry but what a #iss take the whole bloody thing still didnt get a 'care' plan so I am worried that it was never set up for that in the first place :( **Sorry for the essay (I cant be concise or logical now sadly) all other posts will be short promise!