In a country where more and more people seem to be dissatisfied with the standard of education in British schools and are opting for selective schools or even educating their children at home there are some groups of children who even in this day and age, are still struggling to be allowed a place in a local school in the first place.

Despite the 1981 and 1993 Education Acts, the assumption that children with disabilities and/or learning difficulties should continue to be educated in segregated surroundings is still very prevalent. Bob Black relates some of his experiences of getting inclusive education for a child with Down's syndrome.

The initial shock of discovering that our daughter had Down's syndrome was quite shattering, not because it is some awful and life threatening condition but because we didn't know what it would mean. The doctor's response to the question was simply that she would never lead a normal life. After a few weeks of depression and family discussions, we started to ask some very ordinary questions, like, "what is a normal life?".

The most frightening thing about having a child with a disability is that it throws you face to face with your own ignorance, preconceptions and prejudices, this is not a comfortable place to be.

Those first experiences and emotions have been well documented elsewhere so I shall lead on to to our experience of education. It soon became clear that Morwenna was a person with her own personality, identity and ability most of our early problems came from professionals whose experience of people with disabilities was similar to my own, having been brought up in a segregated school (by segregated school in this instance I mean a school where they don't accept all children, like the ones most of us went to where there were no kids with labelled disabilities), and having been trained by other professionals whose experience was automatic segregation and in most instances, institutional care.

It didn't take a lot of research to discover that there was a revolution going on and that some kids with Down's syndrome were going to schools and colleges, holding down jobs, getting married and doing most of the stuff that people consider to be a Normal Life. The gist of all these peoples experiences and the end conclusions of all the recent research, was that the more ordinary a life experience people get then the more ordinary kind of a life they are able to lead.
Fortunately we weren't alone in coming to this conclusion as the Griffiths report, the 1981 Education Act and all the radical changes involved in Community Care legislation were clearly based on the same principles. So a clear picture began to emerge of the possibility that our daughter would indeed be able to have a Normal Life, though quite possibly needing support in certain areas. Once again the major problem seemed to be the professionals. We had looked at some of the problems associated with Downs syndrome, like speech and communication, hypertonia and learning difficulty and nothing seemed insurmountable.

When we looked at the physical difficulties that were being overcome by children with cerebral palsy at places like the Peto Institute, Morwenna's problems paled into insignificance and when we discovered that some deaf kids and some with autism were learning to communicate using signing and modern speech development techniques we thought there could surely not be too much of a problem.

However it was plain that some sort of structured help and early intervention would be required and the first thing that we were offered was a place at the Child Assessment Centre at the local hospital, where we were told they had all the relevant expertise and experience to help with all the difficulties that we may encounter.

The two things that were plainly obvious to us when we went there to have a look, were firstly that it was in a hospital building where there were no 'ordinary' kids, just kids with the same or more profound problems than Morwenna. Secondly the experts all had very low expectations of the children there and had almost pre-planned their futures in the manner of: two years here, then on to the special school, then into an adult training centre and then into residential care with an assisted sheltered work-placement and trips out in the minibus on a Wednesday. Was this the status quo that we had to accept, was this the price of getting the specialist help that Morwenna might need to attain her normal life ? Our experiences up to this point had been with a variety of local 'parent and toddler' groups and some home visits from a rather enlightened health visitor (Pauline Bell, are you out here browsing the Internet?) this hadn't been without its difficulties in terms of people's reactions to Morwenna (much of this I now realise was self imagined), but in general, apart from her lack of speech and physical ineptitude it had been a straightforward inclusion. In some ways it was an advantage to Morwenna to be wearing her glasses and hearing aid, (both had arrived in the same week when she was still not two years old, but that's another story!) as in these situations as it gave people something tangible to identify with her difficulties.

We refused the place at the Assessment Centre and started looking at other possibilities. It was quite plain that Morwenna was developmentally behind her peers, but she was developing. We knew of a Montessori nursery that had opened in our area and rightly or wrongly decided that a good structured environment which was education based would be a good preparation for a nursery unit at one of the local mainstream schools. So working on the theory that even if she just got used to sitting at a desk and working alongside other kids she would have a better chance at being accepted by a school later, we enrolled her (this cost us money). The nursery applied for, and was granted, some ancillary assistance as Morwenna was only just walking and was physically very vulnerable in a group situation.

This situation was not supported by the prevailing professionals as it meant that they had to visit her to do their assessments and come to our home to deliver Portage, speech therapy etc., and it was not an easy path to choose because it cost us money and time and we then had to take her to separate places to get her physiotherapy, medical checks and so on. The concept of delivering services to her rather than taking her somewhere that all the professionals could congregate and deliver services at their convenience seemed inconceivable to them. It was still very much assumed by the health and education departments that Morwenna would go into either the special school or the special unit attached to one of the mainstream schools.

In the meantime there was more and more evidence piling up in support of our theories and the work and research coming out of places like the Sarah Duffen Centre was adding to our commitment to getting Morwenna into the local school alongside all the other local kids.

The health visitor was replaced by weekly visits from a preschool teacher doing the Portage programme and some very useful input from a Teacher for the Deaf, this was proving very successful in showing that she was indeed moving on and developing skills. With the help of a well written recommendation from the portage team, both of the local mainstream schools offered her a place in their nursery units. Morwenna would arrive after all, with a full time ancillary, another pair of hands for the classroom.

We opted for the smaller, slightly more elite of the two schools although the headmaster's grasp of the idea of inclusive education was tenuous to say the least, and I suspect that he saw it more as a short term exercise, a kind of warm hearted social experiment. The first three years were extremely stressful for us - we were continually made to feel that we were living on borrowed time and each year there was the absolute conviction of the part of the Educational Psychologists, health professionals and even the headmaster, that she would soon move on to the special school or unit.

Each year Morwenna entered a class with a teacher fearful of the unknown, and each year she left with a convinced and grateful teacher ("it's been a real pleasure to have Morwenna in the class this year, Mr Black"). Each year the ability gap between Morwenna and her classmates has grown a little wider but she is reading, writing and even learning to touch type and most importantly she goes out to tea with her friends and friends are queuing up to come to her house to play. Kids are much better at dealing with disability than grown ups, its just a part of the person to them and not the dominant feature.

The educational psychologists and the health professionals are still hovering about waiting for it to fail, anticipating problems that will require her to be segregated. We still need to liaise closely with the school to help them understand that they can cope with a slightly wider ability range than they have been used to and we are very grateful to have had a lot of support from organisations like Network 81 and the Portsmouth Down's Syndrome Trust as well as other parents of both disabled and non disabled kids.

We had a perpetual round of meetings with the various education departments to try to overcome this blind conviction and open their eyes to the fact that my daughter had as much right to go to the local junior school as anybody else's child did.

It has taken three years to get to the point where we can actually sleep the night before her annual review and we had to align with a variety of pressure groups, voluntary bodies and study continually to keep up with legislation, education and law.

Morwenna is eight now and I feel almost relaxed about her school situation. It has not been an easy route to take and each paragraph of this story deserves a whole chapter, if not a whole volume. In many ways it has taken over our lives. The rewards however, have been enormous and not just to us. Teachers, other parents, other children and the school in general have all benefited in a vast variety of positive ways and Morwenna has blossomed into an amazing child who is valued and respected and has a genuine part to play in the school and in our local community.

I realise that this year's acceptance and the general mood of comfort with her situation is attributable to huge number of factors and I still feel that even if a battle has been won there is still an enormous struggle going on, akin in many ways to those fought by other, more vocal, oppressed groups in recent history. For the time being though, I intend to bask in the pleasure of "I told you so". Please can I have at least one year of just getting on with it before I have to start preparing for the prejudice and preconceptions of the local secondary school?.............................

For more information you can contact
Bob Black
on the following e-mail:
support@include.demon.co.uk
mailto:support@include.demon.co.uk
Bob Black is the chair of
Network 81 Cornwall
Part of a national network of parents with children with Special Educational Needs. Working towards properly resourced inclusive education.

He is also Down's Syndrome Association Development Officer South West.

Copyright© 1996 - 1998 Bob Black for Educate Online Worldwide

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