Nick works full time but his wife gave up her full-time job to work more flexibly to help support Louis.
The diary rules our lives and has done since the time Louis started receiving specialist help, with different things happening each day.
Nick says that when Louis got to secondary school they decided it was time to tackle the carer's assessment issue - and it was another battle to access one.
Eventually the assessment identified getting a budget for after school care as our main priority. But it took a lot of persistence to move things forward, while continuing to juggle his care, our work and some kind of home life which was tiring and stressful.
Eventually Louis was awarded a personal budget for two sessions of after school support per week.
Louis still needs some support in the morning. Buttons are difficult for him, so school uniform is adapted with Velcro. He also needs help with breakfast as his hands are still quite shaky.
Enabling him to be more confident and independent is a big part of our lives and as he has always been a sports fanatic I have spent literally hundreds of hours enabling Louis to develop skills. Fortunately, I enjoy sports!
* Photos of carers have been changed in the interest of privacy.