Another guest writer has been invited to contribute to the blog. You may have guessed how I am related to Mini from the title, but I will leave it for you to discuss my chosen pen name with her. She has asked me to try and write about the experiences of a parent of a disabled child.
Mini started out with eye problems. All unremarkable really, apart from the odd incident running into 800-year-old refectory tables and bending spectacle frames at the after-school football club.
The bolt from the blue happened when she was at secondary school; I remember being at work when I got a phone call.
“She is not well, has a severe headache, and can’t stand bright light. The people on the NHS help line think it may be Meningitis”.
At the time my workplace was forty minutes’ drive from home, along one of the most congested routes in the North of England. The recommendation was to get some Ibuprofen for her, so her Mum had to leave her alone to get the medicine. One fraught work day later I was back at home looking after the pair of them.
It did settle down and Mini seemed to be on the road to recovery. During the following summer we had a family holiday in the Lake District, and although feeling tired she did manage some walks. We have pictures of her at Aira Force, a waterfall near Ullswater.
Then came the Graded Exercise Therapy. We should replace “that’s when the wheels came off” with “that’s when the wheels were attached”. Suddenly our daughter needed more help. Simple things like an opticians appointment meant a pushing a wheelchair up the steepest shopping street in the town. To manage life we had to be highly organised; every task we had taken for granted now meant a military style operation in planning.
There were also endless wrangles with officials. One was trying to get school transport arranged; we were given the opportunity to put a case to the panel, only to be told that they had already decided we couldn’t have help and there was no chance of appeal. Another was with the special care team at the school. Others Mini has already written about in her blog.
We got there though. It has been a bit of a rollercoaster ride (especially in a wheelchair to the opticians). Mini is now on the far side of education, and is planning her future with Jarred. Both her family and Jarred’s family are behind her, although we won’t have to push now it is powered wheelchair.