The ups and downs of living with a teen

Blogtober17 – Day 5 – Education

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.

 

#Blogtober17

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22 Comments

    1. Thank you, health is far more important as education can be caught up, it has taken me a long time to realise this though, and it now seems to be working a lot better x

    1. Health does come first, it has taken me a long time, to stop worrying and stressing about her education, and it now seems that letting her lead how much she does, she seems to be coping better x

  1. Oh I do hope you can find something that works, health definitely comes first and I am really pleased to see the school is being very supportive. Best of luck 🙂 xx

    1. Thank you, we had a meeting today and very small steps forward with the support of letting C lead how it goes, we have been extremely lucky to have such amazing support all around, but a lot of that is also down to C who they know is desperate to get back to full time school x

  2. I hope your daughter recovers soon! I totally agree with you that health should come first before education. A big hug to you for staying strong and not giving up!

    1. Unfortunately, this is something she will have for life but could go into remission and never suffer again you just never know. Health does come before education and luckily the support we get from education agrees with this as well x

  3. Well I wish you and your daughter the best of luck! I’m glad to see your effort to give your daughter all that she needs in life, you are an amazing mom!
    Keep up the hard work, strength, positivity, and love…
    Prayers goes a long way too! Drs say I’m a miracle with my recovery and I owe a lot of thanks to the prayers I received!
    I’ll be sending love and prayer your way ; )

    1. Thank you, as a parent you do your best for your child no matter what, and just doing what any other parent would do, but it is nice to know that she knows we are there for her and will fight her corner. Am glad you made a recovery x

  4. My goodness, I can’t imagine how difficult this has been not only for your daughter but your family as well. You’re so lucky to have a supportive school and it sounds like they’ve really bent over backward to be accommodating. I truly hope one day she is able to return. x

    1. Thank you, it was a lot harder at the start of her illness, but we now seem to be on a level where we know what we are dealing with and just take one day at a time. I can not praise her school highly enough, they really have been amazing, we had a meeting this week and they are still going above what I could have asked and not just on the education side.

  5. Oh bless your daughter, like you said health certainly does come first. Its good to hear that her school are being supportive and working with on what is best for her. I hope the meeting went well.

    1. Health is important, and I have finally learnt that if we put her health first, education follows naturally, the meeting went very well which always helps x

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