Epilepsy and ASD - how to keep a teenager motivated at home?

[ShingleStreet1]

I think I just need some advice/propping up from anyone going through a similar situation with their child's illness/ASD as I feel lost at the moment.

My daughter was diagnosed with frontal lobe epilepsy at the end of January. She has not been in to school since November. At this time we weren't sure if it was epilepsy or Tourettes (as the school were implying), and we thought school refusal may just be a part of her ASD.

We have since learned that she had been laughed at by other kids at school when she had seizures (an average of 38 over 24 hours when she was monitored) The seizures had also been causing incontinence, which also understandably made her reluctant to go anywhere, let alone be surrounded by a bunch of unforgiving teenagers at school.

We have spoken to school and her excellent epilepsy nurse about special provision for GCSEs this summer. We're very disappointed to find out there can be no adjustment to her exam results to reflect her ability unless she is ill on the day of the exam, despite the fact that both epilepsy and the drugs used to control it have caused memory loss, depression and exhaustion over months. I had some great advice on GCSEs from other Mumsnetters on another thread.

What I'm stuck with now is how do I cope being a 'home educator' when my daughter has no energy or motivation and even the thought of revision sends her into a meltdown? I now come home early from work to support her with revision but she is too tired and gets really stressed. She rarely goes out to exercise and I worry about how this affects her sleep, vitamin D levels etc. We do not allow screens until 4pm but most days I just feel like she is marking time until she can have her phone. Any attempt to get her off screens after 4pm is also met with a meltdown. How can I gently get her interested in things that will boost her creativity and wellbeing and get her away from screens? I am not always the most patient parent in these circumstances. Any advice from wise Mumsnetters gratefully received!

I imagine if she is having 38 seizures a day she is exhausted! And my priority would be to try and get the seizures under control before worrying about GCSE's. However, if she is not able to access school it sounds like she needs an EHCP if she does not already have one so I would try and apply for one. With this in hand you would then be able to ask for an EOTAS arrangement with home tutors to help with exams. ds2 did all of his exams a year late, because for different reasons he was out of education for a couple of years, but the important thing is that he did manage them eventually so all is not lost if she can't cope with them this year.

You don’t need to home educate. The LA must provide alternative education. That should have begun once it became clear DD would miss 15 days. If this isn’t already in place email the Director of Children’s Services informing them of the situation and requesting provision. If you are ignored or provision isn’t arranged ASAP email again reminding them of their statutory duty under s.19 of the Education Act 1996. If that fails contact SOSSEN for help with a pre-action letter.

If DD has an EHCP then the LA must also provide anything specified and quantified in F and you need to request an early review. If she doesn’t already have an EHCP you need to request an EHCNA.

Although special consideration won’t be given unless there are issue around the time of the exams access arrangements can be put in place.

I get DD is exhausted, would she take Vit D tablets? At least that way her exhaustion isn’t being exacerbated by low Vit D.

Thanks so much for your advice. I will follow these things up.

Interesting that we were not offered provision by the school until we chased it with the Head, having had no response from SENco. This was two months after my daughter had stopped going to school. Teachers are now sending emails with work for her to do, so I am not really home educating myself, but this is hard for us to manage at home and I do feel that tutors/actual lessons will help to provide more focus and structure for DD.

We have decided just to focus on English and Maths when she is ready and see how she goes. It's hard because she doesn't want to be left behind while her friends go to sixth form but I think she may have to face the possibility of taking her exams a year later to avoid piling stress on at such a difficult time.

Just trying to get her out of social media/tv obsession so we're doing a jigsaw given by a friend and I have ordered a book on writing poetry for teenagers. Hoping this will help her memory, concentration and general wellbeing. Fingers crossed!

The duty to provide education to those unable to attend school lies with the LA, not the school, so contact the Director of Children’s Services.

Thank you FloatingBean. I will.