A life less ordinary

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Melissa Paulden talks to mother and SEN charity founder Jane Holmes about her work, her hopes and fears for SEN and her eight-year-old pride and joy Kitty

Jane and KittyBack in 2002, when her daughter, Kitty, was just one year old, Jane linked up with other parents to start a support group. Seven years later, it is a thriving Berkshire-based charity called Peapods, a highly regarded lifeline for parents of children with physical disabilities.

The experience of Peapods taught Jane a great deal about the problems encountered by families of disabled children and, looking around her home borough of Wokingham, she realised that families of children with other special needs were also in desperate need of a voice, and of a physical base where they could meet and receive support. Many of these parents’ children also had nowhere accessible to play in the community, so Jane decided to fund raise for a special needs play and support centre for families. This project developed into her next charity venture, Building for the Future.

“I am deeply passionate about improving the lives of disabled children and giving them a more prominent position in society” says Jane. “Disabled children are still sidelined, even today, and people would rather not think about them. My daughter is one of those children, and that is enough to push me every day.”

Building for the Future enjoyed quite a prominent launch, due to its celebrity patron, international comedian and writer Francesca Martinez, and shortly afterwards Kitty went through a major transition in her life: she moved from a resourced mainstream primary school to a special school 24 miles away from home. Suddenly, for Jane, the work of raising funds, running events, meeting with parents and lobbying local authority and health departments had to run in tandem with preparing Kitty for a new chapter in her life.

Although the mainstream primary school had done its utmost to support their daughter, Jane and husband Jasper felt the move to a specialist environment was necessary to help non-verbal Kitty access the curriculum. In addition, it was time, they felt, for her to be in a class with children with similar needs.

“She definitely feels like she fits in now and it has helped her confidence,” says Jane, of Kitty’s experiences at new her school. “Previously, excellent specialist help was drafted in at great expense, whereas now it’s on site. The downside is that she has to travel such a long way to school as there isn’t adequate provision locally. That breaks my heart every single morning, but we have no choice.”

Jane’s experiences aren’t isolated. Due to school closures and lack of reinvestment, many parents of disabled children in Wokingham are now sending their children on hour-long drives to out of county schools. The trust that these parents place in school SENCOs, far away from home, is huge. Does Jane feel that they do a good job?

“As long as they do it because they are passionate about helping disabled children access their education, then they do a good job. I have come across very talented SENCOs and some who seem very disinterested. Certain people have a gift when it comes to teaching disabled children and they will continue to improve themselves, as anyone keen on developing in their jobs would. I also think better communication with parents turns a good SENCO into a brilliant one.”

Good communication was certainly the key to one of Jane’s greatest achievements, working with her local authority to revitalise an archaic SEN department. Previously, parents’ phone calls and emails went unanswered, statements were insubstantial and children were sent to the wrong schools. However, with a background of fifteen years in human resources, and her experiences of being a service user, Jane soon won the respect of those high up in the council. Her calm exposure of some cold hard truths brought about change in the way that families were treated and supported, and it’s  change that has lasted.

“I am proud that parents now have a much greater voice with our service providers. We are taken seriously, given time and listened to. What we say is not always acted on, but we are always heard.

Parents go through periods of feeling powerless over their child’s future. To realise that major decisions are being taken about your child by people who don’t even know them, let alone recognise their potential, is quite possibly one of the worst feelings in the world.”

Other local authority SEN departments could improve, says Jane, “by listening to parents and acting as supports and guides. Parent-power is the best way of getting the government to really listen and to involve us in their decision making. I would like to see more parent advisers and greater participation between the government and parents, not just in terms of what we need, but how it should be provided.”

If a reform of the whole SEN system was in Jane’s hands, she says she would “take a long-term view on the effect that adequate education has on children’s futures and the knock-on expense that inadequate provision has. I would provide more support for more severely disabled children and ensure that local special schools met their needs, even if more specialised units had to be added on to them.”

However, Jane does worry that special schools will become bigger and less specialised. “Disabled children may be lumped together with no real expertise available in their particular condition.” There also needs to be more physiotherapy and occupational therapy happening in schools, Jane feels.

With Building for the Future growing steadily, and Kitty settled at school, Jane is appreciative of the  good things in her life.

“I am thankful for all the lovely people who work with my daughter directly, especially the learning support assistant who helps Kitty with everything and who tells her she is beautiful every day…The people who work with our children at grass roots level come in for a lot of stick, but, most of the time, they genuinely care and want the best. The problem is that their hands are tied by budgets.

“I am deeply honoured to have been by my daughter’s side throughout her very difficult journey over the last eight years. The progress she has made since her birth is greater than most people manage in a lifetime. She is non-verbal, tube-fed, wheelchair-bound, has extremely limited use of her hands and has to travel for two hours a day just to get to school and back. And still she smiles.”

For more information about the Building for the Future charity visit:
www.bftf.org.uk

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