How to communicate effectively with school?


Good morning! My daughter has had JIA since she was 2 years old. She is now 14 and after an unsuccessful medication break she is having the worst flare up ever, 4 months in and methotrexate and steroids are still not working, but there's a plan! So although she has lived with arthritis for over 10 years this feels is a new experience for her. She has just started Dance GCSE and keen to continue but she has very limited movement (at the moment!) in her feet, knees and ankles. For her to continue I need to be able to give them specifics to notify the Awarding Body as she currently won't meet the assessments, but this could change, has anyone had any similar experience or suggest where to start? The teacher has told me it needs to be very black and white, which I understand works with some other pupils with different conditions. Thank you!


  • anneb82
    anneb82 Member Posts: 317

    Hello @RachelE

    Welcome to the online community and thank you for joining us.

    So your daughter was diagnosed with JIA when she was 2 years old and she is now 14. She is currently going through quite a terrible flare up which is very unusual for her. The medication she was on was not working but you now have a plan with her team and hope that things will soon start to improve for her. You concern is that she has just started her Dance GCSE and her teacher needs you to contact the awarding body to detail the specifics with your daughters condition for her future assessments. However you don't know what to do as things are very up in the air at the moment with regards to what she is able to do, although this should change once the new plan has started. Your wondering if anyone else has had a similar experience or if anyone could give you any advise on how to approach this.

    Wow, that is a situation and a half. After reading your post my initial thought was what is the deadline for contacting the awarding body? I completely understand where you are coming from when you said the teacher says it needs to be black and white, but in the case of JIA and Rheumatoid Arthritis, even when everything is going well, everyday can be different. I, like your daughter, was diagnosed with JIA when I was 2 years old and I am now 40. I can remember secondary school being very up and down but my school was very supportive of me, especially when it came to getting through my exams. I am hopeful that your daughter's school will be the same especially since things have moved on from my school days. I do however understand what it is like to grow up with JIA and not know any different, so if your daughter ever has any questions, I would be more than happy to help.

    Getting back to your original question, I think if I was you I would get in touch with the awarding body and explain the current situation to them and take it from there. They may be able to give you more direct advice than your daughters teacher. I would be very interested to see what other members have to say regarding this situation too.

    Ive included the link below to the helpline details in case you would like to speak to anyone as well as the young peoples details that your daughter may want to take a look at.

    Please do let us know how your daughter is getting on and how her new medication is helping her. Good luck with the awarding body and her teachers!

    Take care

    Anne (Moderator)