We’re pleased to be able to share with you some tips written by Tina Biss for parents of children with cystinosis. Tina has a (now grown up) daughter with cystinosis and hopes that by sharing her experiences she can help people who are now going through the same situations that she went through when her daughter was younger.
If you have any tips that you would like to share we would love to read them!
I was prompted to write this article after attending the Cystinosis conference in Manchester this year. I realised that there are things patients are entitled to that parents and patients are often unaware of. There were 2 things in particular that came up so I will tell you about them now in case you don’t know.
My daughter has Cystinosis and when she was very young, one of the very first UK Cystinosis Foundation magazines had an article about Radar Keys. I had heard of them but didn’t know much about them. The article said that patients with Cystinosis were entitled to have a Radar key to use disabled toilets. This was due to the fact that they have to drink so much and often need the toilet more frequently and sometimes at shorter warning than other youngsters. This seems a small thing but it was very useful at times as public toilets were often closed but you would still be able to use a disabled one with the key. All I had to do was visit my local council office and complete a short form and was given a key straight away.
Extra time for Exams:
When my daughter was at Primary school one of her teachers advised me that due to Cystinosis she was entitled to extra time for her exams. I asked if this was just while she was at Primary school or when she was older too, as I didn’t want her to get used to extra time then when it came to GCSE’s etc. she wouldn’t get it. She said it would be all through her school life for GCSE’s , “A” Levels and at University. This was great as far as I was concerned.
In another school she attended they didn’t give her extra time so I queried it and was told she wasn’t entitled. I decided to go back to the previous school and they assured me she was and it was due to several reasons. Visual impairment meaning she was slower at reading, having to drink during exams (time to drink) and perhaps having to use the toilet. She advised me to go back to the new school, get a letter from her consultant advising she would need extra time due to visual impairment and take it to the school. I did this and eventually she was then given extra time.
Finding out about this is difficult as it doesn’t fit with the normal requirement for extra time, such as someone that is struggling academically. My daughter was very bright so some teachers could not understand why she should have extra time.
It meant she had to take her exams in a different part of the school to her class and this also threw up another problem. On one occasion she found the exam paper really easy and when discussing the paper with her friends found the questions she had were different to them. This was because she had been given the Low paper not the High paper. With the Low paper she could not get higher than a C at GCSE. She should have had the High paper enabling her to get A*. The next time she went for an exam she saw it was a Low paper again and said it was the wrong exam paper. They insisted she would not be taking a High paper if she needed extra time. She had to refuse to start until the adjudicator went to get a teacher to confirm she should have the high paper.
I hope these bits of information help you and I am sure many of you have other useful information you could share. Our children have to put up with so much, let’s try to make sure they get what they are entitled to.
– Tina Biss