School doesn't get my child's epilepsy!

[zippytiptoes]

I am fuming!

Without boring you with the details, my 4 yr old daughter has drug resient epilepsy and after trying 9 different medications, she has finally been put forward for the ketogenic diet which we start in April and which we are really dreading. At our consultants appointment yesterday, they mentioned the idea of getting Lila a statement of special educational needs as when she gets further up the school, it's likely she will need additional support with her learning. At the minute she has discreet absence sesizures but has hundreds in a day, which leaves her feeling fragile, tearful, confused, unwell and lots of other horrible things.

When I went back to nursery yesterday and mentioned it to the head, she said she'd find it difficult to support us in our attempt to get a statement for Lila because a) the school don't take children who have a statement, b)it's too early on in her school career and they don't really get invovled in that kind of thing at nursery and c) It would be difficult for her to even make a statement about my daughter's learning needs because she is "never even ill at nursery".

They are clearly not noticing that she has seizures, which I'm aware are hard to spot if you don't know what you're looking for, but I feel as though she is denying that DD has a difficulty. She was very condescending and made me feel really hurt and angry. DD was at another private nursery before, but we moved her so she could make friends with the kids she'd go to school with. Lots of people were saying last night that I should send her back there, but I'm not sure that that would be the most sensible move, although I did feel that she was entirely supported there. DD has show a lot of anxiety about nursery and literally cried for an hour and a half about not wanting to go.

Yesterday when I left her, she was so anxious that she was sick and I had to go back and collect her half an hour later. She is clearly not unwell and came home and was fine. I took her back to nursery this morning and the head wouldn't let her in and sent us home with the most patronising tone. I am really cross and it takes a lot to make me cross. I've phoned the epilepsy nurse and she is also annoyed and the Ed Psych is going in to assess our daughter's learning needs soon but I am really cross and don't feel that they have been at all supportive. What would you do?

Hi We are in the middle of the statement process ourselves.

Has your DD failed to reach targets that the nursery have suggested? Have the Nursery staff got any concerns re her achievement?

You can contact Parent Partnership, they are a charity that are spread across the UK, they will support you making decisions and basically come to any meetings with you. They can help with the Statement process should this be something you need to do.

We contacted them and they are brilliant, even just to listen and give advise over the phone. Here is a link

www.parentpartnership.org.uk/

hope this helps, now gotta go as DD sitting on typing hand!!!!

My instant reaction to your post is for you to seriously consider sending her to a different school. This Head's reaction is not a good sign of things to come and it sounds like you are in for a battle to get them to recognize, let alone properly support your dd's needs.

Personally, I would take her out of the school nursery and send her back to the private one where she was happy and supported, until you have worked out what school she will be going to and made sure the support she needs is available to her.

As for 'we don't take children with statements' they are absolutely not allowed to say that. Stating that they wouldn't get involved with statementing at nursery is another huge red flag. Any school worth it's SALT would want to identify needs early and work with the parents to ensure they are properly supported.

I would second contacting Parent Partnership for a chat, because they will have knowledge both of the schools in your area that are more inclusive and also have experience of your Local Education Authority and their attitudes and processes.

Other places you can go for advice are

IPSEA

and

SOS SEN

My own ds is just about to leave his primary school to go to secondary and when I look back at the monumental battle we've had across the years, to get them to recognize his needs and support them (something they still don't do, even with a statement, extensive professional input and a diagnosis) I wish I had pulled him out of there years ago. Unfortunately, by the time we won the fight to have his needs properly addressed he was used to the school, had a best friend there and it would have been really detrimental to his emotional state/mental health to move him somewhere else. If you have the chance to find the right setting early on, I would go for it, rather than banging your head against the wall of what sounds like an extremely unhelpful, non-inclusive school.

I would take it that they can't be arsed from the start then. Think of your daughters future, she is still young just starting her education, would you want to spend all of your time fighting a losing battle with this school?

They don't take children with statements

WTF? Do you want her to stay somewhere with that attitude?

As to what I'd do, I'd send her to a state nursery with a good rep for dealing with any SN.

Agree with all of the above, damn woman is totally out of order.

Its people like her that get Early Years a bad name.

A school cannot refuse to take a child with a statement but would you want your Dd there?

My niece was on the keto diet, she used to have hundreds of seizures a day, it made a massive difference to her but it took a lot of work from my dsis.

Good luck

"school cannot refuse to take a child with a statement"

Not strictly true sadly. We have an academy, the one my ds was due to attend that has done exactly that. Refused every child with a statement and the LEA seem powerless to make them.

I wont say I cant believe it moose, after the things that went on in schools around me last week , I would believe anything. It is soo frustrating.

I agree with the others that in your position I would be looking at other schools - they don't sound very supportive at all and seem to have no concept of disabilty/equality law.

It can be hard enough when "ones" child gets the support they need; do you really want to spend the whole time fighting someone like this?

Thank you. This is all very helpful and supportive. I really take on board your suggestions. Me and my DH are going to have a long chat tonight.

Hi Zippy. Some great advice from everyone above re your probllmes at school.

If you want to chat at all about the keto diet, DS has been on the diet for almost three years now and it has been miraculous! If you have a search in the old special needs stuff under my name, you'll find our story from three years ago! Have you discovered Matthews Friends? Great online community with real experts for both the diet and drug resistant epilepsy as a whole. Feel free to message me if you like

Thank you so much. It would be great to know a bit more. I'd really appreciate that. Will get in touch when I've sorted the school stuff xx

If I can give any advice, it would be to avoid a school that demonstrates this kind of dismissive and exclusive behaviour at any cost.

We were in a similar position to yourself. My DD went to a private pre-school and then a nursery attached to a school. She had a history of illness which had been fully supported at her pre-school but developed complex partial epilepsy within a few months of joining the nursery at the school. She then remained at this school until nearly the end of her Year 3. (She was experiencing between 5 and 30 seizures per day and like your child drug resistant.) We had no epilepsy nurse in the area and the school did not understand her epilepsy, her associated developing learning issues, nor appear to want her in the school.

We remained at the school for this time believing that, as an "outstanding school" it would be worse elsewhere. THe teachers (bar her yr 2 teacher) were dismissive, she received no extra help, was ridiculed and bullied by children.

Eventually we left and moved 80 miles. She joined a tiny village school towards the end of her year 3, fitting constantly and with her self esteem in tatters. The new school were amazing. Other children were becoming frightened by her epilepsy as during her absence seizures she was unresponsive. After a few days DD together with her teacher explained to her class about her condition. This had obviously been handled incredibly well as the reaction by the other children was amazing. Several parents spoke to my husband and I, said they were sorry to hear about DD's condition and that their children had gone home saying that they were incredibly proud of DD coping with her condition and they thought she was lovely. Within 2 weeks an educational psychologist had been contacted. DD was given one to one support immediately and work began on improving her self esteem.

We are now 2.5 years on - she has grown out of her epilepsy, made 5 years' academic progress (although still struggles with maths), has number of friends and is a happy and much more confident child. She still has several difficulties and has been offered a place at a private nurturing school for the start of her year 7 later this year.

I have several other friends who have moved from state to private where the care and understanding is far better.

During the time at DD's previous school, she was mainly sent home at every seizure (hence by 10.30 on most days I had been called in). THis resulted in a lot of missed schooling. More frightening was the school's lack of understanding of epilepsy. On occasions I was called saying she was in a bad way - I would arrive to find her merely needing a few minutes sat with me and then return her to class. On others, a call to say DD said not feeling well (but obvious that she was not being believed. I arrived to find her in an awful state, pupils dilated, unresponsive and blue around the lips - the school did not appear to realise that she was in an acute state.

Sorry - my story is not meant to frighten you, but merely to urge you to find a school that is caring, understanding and open to take training in epilepsy.

That's fantastic to hear how well you daughter has done since moving school We also had a similar story in that DS first school were just useless regarding his epilepsy. He too has made great progress (since being on keto diet) and like your DD still struggles with maths!!

In fact, DS first school were so useless, we initiated a CAF just to get everyone in the same room to try and talk together!