Even when Nick was a very small child, my parents were thinking about his long term future. From what would happen when school ended, right up to what would happen when they died?
When it came to me they didn't have to worry (too much!) I would leave home, get a job and make my own way. But this wasn't an option for Nick, and they had visions of him having to stay at home for the rest of his life.
It's not that they didn't want him to stay with them. Every time they dropped him off at college my mum would cry all the way home! But they thought, quite correctly, that it wouldn't be fair on him to remain at home forever.
They also thought that it wouldn't be fair on me to become his full time carer later in life.
I had mentally prepared myself for this possibility and would have happily done it, but again, this wouldn't be best for Nick.
He needs constant stimulation, a timetable of activities, lots of people around and friends to mix with; something that you just can't provide as an individual within the home.
My parents recently recalled going to collect Nick on his last day of school.
He was all set to go off to college and then hopefully to a permanent placement, whilst on the other hand one of his friends was just going home. End of story.
And this is so often the case.
It seems that profoundly disabled people have three options. They can either stay at home, or be assessed for a supported living initiative. Be it a care home, living alone with access to day services and social workers, or a more unique arrangement.
Mum and dad had, as ever, done their research and found a middle ground. A type of residential placement, that wasn't a care home, where Nick could live independently with carers at hand.
There were only a few such places, but the one they liked best, and that Nick reacted most positively to, was called the Canterbury Oast Trust.
It was founded by the families of disabled people to provide the kind of life they wanted for their children; living and working independently but within a framework of care. It's idyllic.
The Trust consists of a working farm, a shop, a tea room and acres of woodlands, along with a number of lovely residential houses. The residents live and work on and off site and also attend a variety of activities and classes. They go on holidays and day trips too. In short, they have a life.
My dad told me about the moment he realised it was the right place for Nick.
We were down there having a look round when a tractor went past. Sitting on the back were a group of residents who worked on the farm - they were heading out to the fields together and were chatting and laughing.
The fact that Nick took to it straight away was a deal breaker too.
Nick may not be able to tell you what he's thinking, but his body language is a good indicator, and he looked right at home.
But getting him in - as with everything thus far - was not easy.
COT is the only place of its kind which does an assessment to see if the person is suitable for a place. However in order to carry out the assessment they needed a promise of funding from our Local Authority.
But in a situation worthy of Catch 22, our Local Authority could not offer funding until Nick had passed the assessment. The Local Authority were later criticised by the Care Commission for this. And thanks to my dad's efforts funding in principle came into force in our borough.
What's more the process couldn't begin until we had a social worker on board.
And no matter how often my parents phoned, emailed and wrote letters asking for a social worker, all of their messages were ignored.
In the end my mum, in her inimitable style, quite literally cornered the head of social services during a chance open day at the town hall, and demanded a social worker.
The process from that point was very longwinded.
In order to choose COT for Nick my parents had to make perfunctory visits to several other placements and put in writing why they were not suitable. They had to do this quickly as there was only one place left and no way of knowing when another would come up again.
Once this was done, the social worker had to put together a full report to send to a funding panel, who only sat once a month.
The social worker worked really hard and got the report in on Christmas Eve just in time for the panel. However they ran out of time at their meeting and carried Nick's case over to the next month's business. Losing a month meant Nick could lose his place.
I didn't know any of this and my parents did a good job of shielding me from the enormous stress they were feeling.
Ultimately Nick got in. As ever my parent's persistence and hard work had paid off. He'll never know how lucky he is and what amazing parents he has.
At this point nineteen years of stress caught up with both of them and their health failed. They have now both retired on ill health grounds and are having the quiet life they deserve in a lovely little house by the coast, not too far from Nick.
We did have a scare recently when the Local Authority considered the ‘repatriation' of residents from out of borough care arrangements.
They wanted to save money (it always comes back to that) by taking them out of their current care arrangements, bringing them back to their home borough and putting them in supported living; something that Nick was completely unsuitable for. He can't prepare food, bathe himself or dress himself. There was no way he could live alone with a social worker popping by a couple of times a week!
As usual nobody told my parents about this - they found out from an article in a Mencap newsletter.
My dad called up to check, assuming that because he hadn't heard anything, and because Nick was too profoundly disabled to live alone, that Nick was not subject to this.
My dad was told that, conversely, Nick was first on the list.
We had a few stressful months and further assessments were done. But ultimately the right decision was made and Nick was left alone.
Hopefully his place won't be threatened again, but his future will always be an underlying worry for us all.