Help at school

Can anyone guide me to any info that will help my school to understand my child's epilepsy a little more? They have done a light touch approach and she brings a form home each term which says she receives the necessary support. It's says she asks if she needs anything repeated or reinforced which is rubbish. She is so embarrassed and doesn't know if she's missed anything! On a recent school visit she was on a table in the corner facing away from the teacher and the white board. I asked for this to be changed and it hasn't.

I am a very laid back person but am starting to feel judged and as if school are thinking I'm making a bit of a scene. She has absences and school say how well she's doing and she's having fewer seizures but her EEG shoes she has hundreds in a day.

We don't want sympathy, we just was support and understanding. The head said recently "Its awful, you must feel as though people don't believe you!" And it really annoyed me!

Any ideas where I can find a good explanation about how absence seizures affect children and their learning?

Thanks

11 Replies

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  • I would recomend epilepsy action website is good for info or try one of the epilepsy help lines. Ive recently been to there support group near me where you get to meet people in the same situation as yourself some of them being adults or carers of those wirh epilepsy. Ive only had it as an adult in recent years so won't be much help to you but i would think great ormond st would have specialist there which a lot of Dr and hospitals don't. Good luck. Bev

  • Hi Bev, I was diagnosed with epilepsy nearly 8yrs ago and I know that feeling when nobody believes you. It took 8months to diagnose my epilepsy. My GP would say you shouldn't want to be ill and my neighbours would question me and even the nurse at the hospital where I was diagnosed treatment me like I was lying to the point where when I was diagnosed the nurse apologised as did my GP and my neighbours only believed me when they witnessed a seizure. It's disgusting how everyone is treated like they are telling lies and it really doesn't help the situation because as you said you need support, not to be judged. When you go to great ormand st they will have information booklets about how epilepsy affects adults and children in the waiting area or ask the Dr you see for information booklets and give one to the school. Good luck with everything Bev X

  • Hi,

    There are also some videos made by the excellent epilepsy society - you can take a look at their website and there are videos on youtube which try to explain what seizures are like:

    They have a wide range including simple focal and complex focal seizures:

    If the school/teachers do not seem to understand after receiving the information perhaps contact one of the organisations about how best to approach the school (ie. asking dr. for a letter to explain how to best support your daughter/any necessary adjustments they should make etc.)

    Wishing you and your daughter all the best. x

  • Thanks for taking the time to send this 🙂

  • Epilepsy Action have accredited volunteers who can go into schools and give presentations to help teachers and school staff understand epilepsy better.

    There are also good resources on Epilepsy Action website some in cartoon form aimed at children themselves.

    Your school may have a SENCO ( special educational needs coordinator) who may be able to work with the teacher(s) to establish a care plan/schedule to help your child learn properly in spite of the absences he/she is having (? Computer based or video they can replay to pick up on things they have missed or extra time for exams?).

    Check epilepsy action site to find your nearest coffee and chat or support group as they may know other parents you can speak to or what is going on in schools near you. The school may appreciate the chance to have epilepsy training and look at it in a positive light rather than criticism of an individual teacher.

    Hope you manage to sort things out, meantime I hope you manage to get optimum care for your child with regard to optimising treatment to reduce the number of seizures he/she is having!

  • Thanks. That's really useful to know. I'm going to call our local volunteer this week. Thanks for pointing that out :)

  • Hi

    I asked for my child at the time to be statemented so they no what support they need and they did it,without this I also found the teaching to be rubbish, as you say, with absences, they don't know what they have missed.

  • They won't give her a statement. She's on SEN register but it's soooo token :(

  • It's frustrating for both the parents and children at school, still now in this day and age there's not enough awareness.

  • Firstly it's discrimination........

    Get intouch with your daughters consultant ..must be specialist in this field he/she will lay down the law and stop the hysteria.

    Had a similar experience things will change as they will be dragged out of the dark ages

    Trust me I feel for you x

    Keep posting as I am interested in the outcome

    Anything else or someone to talk to phone the epilepsy helpline

    Best regards

    Antonio

  • I understand your daughter's problem completely, as it was the same for me at school. There is plenty of information about absences, and this shows what it is like from both points of view: hopefully, this link will work: epilepsysociety.org.uk/abse...

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