* Mothers-Teachers Insights On Inclusion is published by David Fulton, and costs pound;18. For more information and to order a copy, visit the website www.fultonpublishers.co.uk
Noc-5 Mothers of children with special needs often feel that from the day their child receives a diagnosis their life is no longer their own. They feel judged, pinned down and patronised by "professionals"; their desire to achieve the best for their child becomes a constant battle with agencies.
Barbara Cole, a lecturer at Sheffield University, describes how her son Michael, who has epilepsy, left-sided paralysis and learning disabilities, would try to hide whenever someone knocked at the door as an "army of professionals" descended on the household. A walk in the park would have to be shelved as a therapist arrived late or unannounced because they happened to be passing.
As a special educational needs professional herself - she works with "challenging" boys in a mainstream secondary - she recounts how her perceptions and attitude towards "special needs" mothers changed as a result of her experiences. In her book Mothers-Teachers Insights On Inclusion she tells the stories of six women who, like herself, have special needs children of their own, and are SEN teachers. The book, which has won the NasenTES Academic Book Award, is praised by judges for giving a perspective of people "torn between their school and their family" and for providing an eye-opener as to how parents really feel - something professionals should be more aware of.
Ten years on, when he was 20 and playing football for his county special team, Barbara's son Michael recalls the "great hurt" he felt when he was forbidden from taking a cycling test because he could only hold the handlebars with one hand, although he had overcome enormous hurdles to ride a bicycle and was taking lessons with his class. He felt excluded, different and Barbara shared his feelings. She was also struck by the fact that professionals "never really considered talking to me as the person closest to Michael".
One of the mothers in the book, Kate, who worked as a Senco and whose daughter has cystic fibrosis, said her own experience had made her listen to parents more and be more considerate of demands on them. She would no longer "glibly give out these early meetings for reviews and then be sniffy because they'd turn up late with a child in a buggy who'd drop toast or whatever all over my floor. Now I recognise that getting there at all ...
can be a considerable achievement."
Truda, a lecturer in the USof associate teachers working with hearing-impaired children, has a child with severe learning and mobility disabilities. Her own story makes her realise that all families have individual stories and that "connecting with families makes you realise the extent of this."
Professionals needed to listen hard to families before making assumptions:
"It's when they do blatant things, like the day I walked in the door and they tell me my kid needs drugs and they've seen my kid three times."
Barbara says her book is not intended as a criticism of individual professionals who take great care to support families and to promote genuine inclusion, but it does highlight a prevalent disjuncture between general professional practice and parental aspiration, which makes the home-school divide "as wide as ever". Parents, she says "still feel the balance of power is against them." Despite decades of inclusion practice "they still use words like fight, battle, struggle in relation to their child and education."
All six women, she says, felt they were listened to as professionals, but not as mothers. She points out the paradox in policy, which has promoted inclusion for the past 20 years, while making the professional field of special educational needs increasingly specialised.
The elevation of the expert and the construction of needs "through a mainly medical and expert model" have simultaneously downgraded the knowledge of mothers. She points out the tension too between an inclusion agenda and a standards-driven system which measures schools through league tables and Ofsted inspections, and makes school managers increasingly reluctant to take risks in special needs provision. "But as a parent of a special needs child," she says, "you have to take risks for them to develop."
Far from parents being treated as partners with shared aims, she writes, they are often reduced to being "resources" in their child's education and are expected to follow the goals set by professionals. Inclusion, she says, is a very complex issue and can mean different things to different families and professionals. For this reason it is made to work not only through a series of broad-brush policy strokes, but from individual effort by professionals to be sensitive to family and children's needs: "What I feel emerges from the stories is the overwhelming notion that within the grand scale of things, individuals matter, at every level and in every context."