Our son Samuel, who is loved dearly by both family and friends, came into the world with a two-inch hole in his back - for which the medical term is spina bifida.
All the nerves from his waist down are damaged. He will never walk. He also has hydrocephalus, a build up of fluid in his skull, so what some take for granted in a child's development, such as short-term memory and empathy, can be a struggle. He has some cerebral palsy, which makes it hard for him to hold things in his right hand.
Oh yes, and a squint, and mild hearing loss in one ear. The list goes on and on.
As most parents with a disabled child will tell you, the focus of those who ask is usually his "problems". We don't often get to explain that Samuel, who is almost five, has excelled at his nursery - beyond the average for his peers in both numeracy and literacy. He has great language skills, a wicked sense of humour, a love of cars, CBeebies, and alternative music.
Samuel, of course, does have special needs. And a familiar, consistent, and secure environment is crucial for his cognitive development - more than for most other children. Until recently, we thought we had found that environment in the form of our local Church of England school.
The church affiliated to St Leonard's Primary School is right opposite our house and when we moved to Streatham, south London, five years ago, we joined the congregation. Our eldest daughter, who is eight, started in the school's reception class, and when Samuel turned two, we broached the subject of his admission.
The headteacher talked reassuringly about "inclusion", and the number of children with special educational needs who attended. Although no pupils were wheelchair users, the school's ramps and disabled loos were always highlighted in the governors' annual report.
We became involved in school life as a family, hosting stalls at fairs, and attending plays and concerts. My wife joined the school association, and I became a governor.
Aware of potential conflicts of interest, we gently encouraged St Leonard's to consider how they might cope with a wheelchair user. When we discovered that there was no inclusion policy, my wife helped to draft one. The school even inserted a quote from a year six pupil: "Our building is really suitable for wheelchairs."
As Samuel became older, he too began to play a part in the closely knit community.
His big sister brought friends home, and our three children (we also have a three-year-old daughter) attended the Sunday school.
Samuel's ability to join in received a huge boost when, on his fourth birthday, he received a small, red, powered chair. For the past year, he has proudly driven it to pick his big sister up at the end of the school day - often giving our youngest a ride on the back.
He believed - as we had for three years - that he would soon join St Leonard's.
But, one afternoon in February 2007, I was summoned by the headteacher. Upon my arrival, he informed me that in a confidential item at a governors' meeting the night before (I had attended, but was asked to leave before the end) it had been decided to refuse Samuel admission. Their decision was based on an assessment of the school's ability to meet the needs of a child "like Samuel".
"Like Samuel" because the assessment's author, a professional architect, has never met my son, nor seen his wheelchair. The school has never written to us to explain the reasoning, either.
The legal decision about where to place Samuel rested with the local authority, it said, and we should take it up with Lambeth. Even when a number of parents wrote letters of protest, they received a similar two-line response.
The diocese closed ranks with the school. The Christian institution, it seemed, was washing its hands of Samuel, “those like Samuel”, and us.
So we dutifully pursued Lambeth. We asked if a specialist access consultant could be brought in. This request was denied five times. Instead, we had to settle for the opinion of a headteacher from a nearby school, who, again, had never met Samuel.
Occupational therapists, physiotherapists, nursery staff and medical professionals all wrote letters on Samauel’s behalf. But we were unable to break down the wall of bureaucracy.
A month ago, we were notified that Lambeth had chosen another primary for our son, three miles away. So, as things stand, Samuel will be sent outside his familiar local community and the network of relationships vital to his long-term development. His sense of being "different" will be heightened.
It is hard enough for wheelchair users to find accessible friends' houses to play in. Any new relationships that Samuel does make will be with children who live miles away. We will be cut off socially from other parents, too.
How has the situation arisen? Well, the government has pioneered a policy of including all but the most seriously disabled or disturbed children in mainstream classes. Since 2002, schools have been required to produce accessibility plans, anticipating that disabled pupils may wish to attend, which set out how adjustments will be made.
When we asked St Leonard's for a copy of its plan, it could not produce one. It seems that one was never written, despite the fact that it should have known, since at least 2005, that its classrooms might be too small for wheelchairs.
Like lots of schools and LEAs, it appears not to be prepared to pay the price of turning the inclusion rhetoric into reality. Lambeth says it has a pitifully small total budget of £250,000 for access and inclusion works in this financial year.
But last year, St Leonard's found tens of thousands of pounds to refurbish a derelict house to create new staffrooms. A state-of-the-art video-conferencing system was installed so that pupils could communicate with a school in Gran Canaria. Both the headteacher and deputy were awarded two-point pay increases (backdated six months) at the same governors' meeting where the fateful decision was made.
Despite these other priorities and its underspend of £80,000 each year for the past three, we have been told that the school has no budget for Samuel.
The first wave of children with special needs, leading the fight for a more inclusive education system, are often the first casualties. Even if schools and LEAs are overruled or found to have failed in their statutory obligations, time can quickly run out.
We have already had Samuel's admission deferred six months to give St Leonard's more time. Our admission appeal won't be heard by the Special Educational Needs and Disability Tribunal until September. But all 30 places in what would be Samuel's class were allocated in April.
Meanwhile, I have resigned as a governor at St Leonard's, and the school seems unwilling to communicate directly, which is incredibly difficult for our eight-year-old daughter.
Last year, a boy came up to Samuel in the playground and asked why he had a wheelchair. "That's what I do," was his simple, but profound reply - the implications of which are still to be fully understood by the education system and the church that preaches “inclusion”.
This is a slightly abbreviated and edited version of an article which appears in full here, in the Daily Telegraph newspaper. It is reproduced with grateful acknowledgements.