The topic for Day 4 of the #blogtober17 challenge is Education, I have decided not to talk about my education but my Daughters, as we have had a pretty rough time with her due to her illness.
For those of you who do not know, my Daughter is 13 and became ill in December 2015 with ME, and pretty much that was the last time she attended school. She has now been diagnosed with severe ME and Fibromyalgia.
She had just started year 7 in her new secondary school, and had settled well, and was doing very well in her lessons and in the top groups. When school returned in the January 2016, she was too ill to attend full time. Unlike a lot of other parents with children with ME, I can not fault C’s school. They were understanding and we tried all sorts of ways to get her into school to attend lessons.
- Starting later in the morning – as sleep is a problem as is waking
- Buddy system – C chose a friend who would sit next to her in lessons, and if she had a problem or was too ill her buddy could be excused to take her to reception or the medical room
- Going in for key lessons – we tried her just going in for maths and english
- Resting – Going to the medical room to rest between lessons
Unfortunately, none of this helped and she went more and more into a crash and became even more sensitive to noise and light.
We had various meetings with school, and education authorities, although these sound quite scary, they were really not and everyone could see how ill she was and we discussed every option possible.
It was then decided that we would try a 1-2-1 tutor who would teach her for 1 hour a day three times a week. We met her tutor, who was lovely and who really understood C. We all agreed to do the lesson in school in a private room, so that she still had a little bit of normality of going to school. This worked some weeks and not others.
We then moved to home tuition, still with the same tutor, and this made things a lot easier for her, but even this caused her to go into a crash, and towards the end of the school year we had to cancel all tuition as she was just too ill.
The new school year started, and all her friends were starting year 9, while she could not attend, and she sobbed her heart out to me. It was agreed to start home tuition again for half an hour a day two days a week and increase if we could. She has managed 1 hour lessons two days a week and one hour just once a week.
Today, we have a meeting in school to discuss her progress and see how we will carry on. C will be attending the meeting as well, and we have talked about what she wants. So the plan hopefully will be, after the October half term to see if we can start to do her tuition in school, and change to home tuition if she feels she can not go in that day, and then hopefully start to maybe start doing proper lessons.
It is hard but we will get there, and she has an amazing support team around her. For anyone who is suffering with education for your child, keep fighting but most importantly put your child first. It took me a long time to realise this but their health is far more important than education, and I have seen from others that this does not hold them back.
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