Now feisty Saera Carter has gone further and persuaded the authority to set up a whole new unit to continue this specialised regime through the secondary school years – for her own son and for students with similar problems. In short, she has rewritten what's on offer. Thanks to her tenacity and persistence, her son, Joshua, and a handful of classmates are enjoying their first year in a brand new unit set up in free space in a local special school.
Her story gives hope to the many thousands of parents with children with special needs, who find themselves battling for the right schooling for their offspring. It shows that if you persevere local authorities can be persuaded to be flexible and responsive in making the best possible educational arrangements for the special needs children in their area.
"My message to them, basically, was these boys aren't going to go away, and I'm not going to go away either," says Saera. "And now they are a specialist class at their new school and part of the whole school community."
Joshua Carter, her 14-year-old son, has extreme motor impairment. He uses a wheelchair and crutches, and for years it was thought he had cerebral palsy, although his diagnosis has now been amended to the very rare condition Glucose Transporter 1 Deficiency Syndrome.
When he was little, Saera, a former marketing executive, took him to Hungary for years of "conductive" education. This retrains the central nervous system and helps children to control their movements and start to stand and walk. But once he started school in England, he languished in a local special school where his needs went completely unmet. Saera found a place for him in the Pace Centre, in Aylesbury, where conductive education is practised. After a battle, she got the local authority to agree to fund his primary school years there. Under this specialist regime, where teachers, psychotherapists, and speech and language therapists work together as a team to meet pupils' individual needs, Joshua flourished.
But there was no provision at secondary level, so, as he came up to his teen years, Saera rolled up her sleeves. First she invited local special school heads to see Pace in action. All agreed that they could offer nothing like this highly personalised regime. She then pointed out to the authority that it would be cheaper to set up a special Pace unit for Joshua and his classmates than to have to fund expensive specialist boarding school places for them.
"I felt Buckinghamshire was not giving me any choices," she says. "I decided to approach them, but I also felt I needed to offer a solution. Pace was willing to consider doing something at secondary level and we ended up spending two years talking together about how it could happen. The big question was finding the right place. Pace could see the possibilities but they didn't want the wrong environment."
Eventually, she says, she found an ally in the authority – an education officer for whom she has nothing but praise – and with his support brought them round to agreeing to pilot the unit. "And once the decision was made everything got sorted out."
Now Joshua and three full-time classmates are continuing to make good progress with their familiar Pace teachers and routines in a special unit in Heritage House School, in Chesham, which caters for pupils with severe learning difficulties. They spend most of the time in their own unit, but join in school assemblies and events.
The fit isn't perfect. The Pace pupils, Joshua and his three classmates, tend to have higher cognitive abilities than their fellow pupils in the special school, but are more severely physically disabled than many of them. But Suzanne Pennington, the school's head says: "These boys are part of our community, they join us for assembly and lunch, and we have a good working relationship with Pace. We share the same basic positive philosophy. It's great partnership working, creative and mutually beneficial."
The education authority is happy. Janet Sparrow, divisional manager for access and inclusion says that it is a positive example of partnershipbetween the maintained and private sector – and that the feedback has been good.
Under the Pace regime, the boys are helped to move their limbs daily, to make new progress and to prevent decline in muscle tone and function, and they follow a lively learning regime where they are always expected to be independent and rise to new challenges. They are confident, outgoing and engaged. Recently Waqas, 12, from the main school, has begun to attend some sessions and has moved quickly from being essentially unresponsive, to wanting to join in. Laura Routledge, a Pace physiotherapist, says the emphasis in the unit is "always on what we can do, not what we can't. Nor do we talk about disability."
Not that the complex move has been without problems. The boys are now at a hilly and fragmented school that challenges their physical abilities, while Heritage House teachers have had to get their heads round the unfamiliar Pace methods. "It has taken time for everyone to understand what we do, and to see that we need time to do it," says Saera.
In addition, the unit is breaking new educational ground. "There isn't a curriculum that's been done for this age group and as they get older it will have to be adapted. We aren't picking up a programme and following it blindly. We're creating our own, and it's a lot of work for all the staff."
However, if all continues to go well, the boys will stay at Heritage House until the age of 19. The unit is no longer on trial and the school is now an official supplier of conductive education.
And after that? Saera's eyes grow steely. Her new challenge is to find ways that boarding schools for special-needs students can be persuaded to accommodate a Pace-style routine, so that the boys can start to go away from home for short spells to develop their independence further.
On current form, the schools don't stand a chance.
The Independant Blog, 5th March 2009