GCSEs ASD and epilepsy

[ShingleStreet1]

Hi there.

I am new to forum and posting because my DD has just been diagnosed with epilepsy and we are really worried about the impact this will have on her GCSEs which she is due to sit this summer. She has not been to school since November and we are beginning to get work sent by teachers as they have accepted she has a medical reason for not being in school while she is adjusting to medication. However, we are worried she will not go back, even after adjusting to meds and motivating her to work at home is really hard, especially as the meds are affecting her concentration.

This has come at such a bad time for her. After a disastrous time at primary school (she was the youngest in her year and not diagnosed with ASD until she was at secondary school, aged 12) she was beginning to catch up with her friends. She did really well in her mocks last summer and moved up to do higher maths in year 9. Then the seizures started. We thought they were tics and they might disappear in time if we helped reduce her anxiety. Sadly this was not the case.

Has anyone else been in a similar situation with health/emotional issues affecting your child's schooling and exams? How did you cope? Should we stay in the school system or break out and home educate?

Any thoughts would be greatly appreciated.

Thank you.

My suggestion is that you apply for an EHCP for your daughter.
There are likely to be more parents who have done this if you also post on the SEN thread.
Try not to worry too much about exams at this stage, your daughter's health and well being are more important.
The following website may be helpful for more information www.epilepsy.org.uk/living/education-and-epilepsy
I wouldn't recommend leaving the school system at this stage.
The hospital education service can offer support to children out of school for medical conditions.

Is she going to be able to sit her exams? Could she focus on fewer subjects? Would suggest an urgent discussion with the exams officer and Sendco regarding Access arrangements and what adjustment for her medical needs she may require depending on triggers (rest breaks etc). It helps to get any required evidence prepared in advance and some JCQ deadlines will be this term.

Don’t deregister and EHE. Parents often find it easier to get support when DC remain on the school’s roll even if DC aren’t able to attend. Instead as well as requesting an EHCNA the LA should be providing DD with education if she can’t attend school. Email the Director of Children’s Services requesting this provision under s.19 of the Education Act 1996.

I think this is very helpful advice. At this stage in y11, you need to think about what is likely to help her secure enough to move to her next stage - a levels, b techs or vocational courses etc. Do you have an EHCP already and is this being followed?

Thank you all for your advice. It has been a busy week but we now have an amazing epilepsy nurse who will liaise with school to negotiate the best options for DD re exams. We don't have an EHCP but will request one.

I would speak to your SENCo urgently about access arrangements- an ECHP is not needed for these, but sometimes assessments etc need to be done before exams and obviously time is getting tighter.

If she qualifies, she could get up to 50% extra time for exams if this would help.

Access arrangements aren't just extra time, but things like:

-Taking exams in a small/private room.
-Rest breaks
-A prompter who can direct her back to the exam if she loses focus
-Different formats of paper etc if this could be an issue.

And many other things.

If she had a seizure during an exam and was not able to complete it, the school would also be able to apply for special consideration, so she could hopefully get a grade that reflected e.g. other completed papers, rather than a cumulative one, if that makes sense.

Getting an ECHP sorted does take time, I would go for this to help facilitate post 16 education but it may not be possible to arrange before GCSEs start.