My son, Robbie, starts school this month. He has identified learning difficulties and the label of Down syndrome, and he potentially brings with him a raft of extra resources for his school.

Legally, Robbie only has special educational needs if he is provided with additional support, but, bizarrely, it is largely up to us, his parents, to make sure the school gets the resources it needs to provide that additional support. If we accept a badly written Statement of Special Educational Needs then everyone suffers.

Robbie had his first statement when he was two-and-a-half. We accepted the advice from professionals, and received a very general outline of needs and a few woolly targets. This was deemed appropriate because early years settings are ideally suited to a young boy with the developmental delays associated with Down syndrome.

In hindsight, this was our first misunderstanding. It is only the best early years settings that provide a genuinely child-centred curriculum.

Robbie’s playgroup had to change its provision for all its pupils to meet the targets it set in relation to Robbie. It might have been a bit easier if we had organised a detailed statement to guide this work.

We made a similar mistake at the start of the latest statementing process.

We read the reports from various professionals, and waited for a statement that would clearly spell out the measures the school would have to take and the support it would receive to do so. But, again, the proposed statement only made a few vague suggestions about practice, and it offered half the hours of additional staffing the school would need.

We read it with amazement. Surely the local authority’s special education officers have written a statement for a child with a profile similar to Robbie’s before? Down syndrome is certainly not new to West Sussex.

So, what does a parent do? First, you reach for the special needs Code of Practice and read chapter eight again, to make sure you have things right.

Second, you contact IPSEA (Independent Panel for Special Educational Advice) and ACE (Advisory Centre for Education).

Third, you speak to parents who have been through the process themselves.

Many have similar tales of woe. A recent report in the European Journal of Special Educational Needs (O’Connor et al, 2005), said 20 per cent of parents were unsatisfied with the process, and that 18 per cent requested a rewrite of the statement. This means, of course, that the majority, like me, had trusted the professionals.

From these various enquiries it became clear that I had to make sure that the statement clearly sets out specific objectives for the provision for all Robbie’s learning difficulties, based on what had been identified in the reports from professionals and ourselves. I also had to find out what form the provision will take - nothing woolly or generalised should be in there.

I rolled up my sleeves and rewrote the statement so it did just this.

Thankfully, the reports from the professionals had enough for me to work from. If they had been woolly, too, we would have been in a very tricky situation. We returned this detailed version to the LEA.

Unfortunately, though, as most parents find, the whole process was already over its time limits and the school term would soon be upon us. We were advised to ask for the statement to be issued immediately, even though it was unsatisfactory, so that we at least had something in place and could then appeal if a suitable statement had not appeared within two months. At the time of writing we are still waiting for the statement to be issued. We are way over the legal time limits and it is the holidays.

But we have spoken to the officer concerned. He is a nice bloke. He says he will put everything right; it’s just that he is completely snowed under with work. He seems to be just one more under-resourced worker in special education.

So what do we do now? Do we threaten or do we cajole? Should we be understanding or single-minded? Do we accept that he is on our side; or is he making sure West Sussex spends as little as possible?

Of all people, l should not be surprised by any of this mess. l chair an Open University course (E243 Inclusive Education - Learning From Each Other), which is full of salutary lessons about the statementing process.

Clearly, though, writing about it and personal experience are very different.This seems crucial to our current, very personal dilemmas about inclusion and special education.

Parents are disgruntled if the special school they trust is closed or if their child has a bad experience in mainstream, and so are parents whose children are denied the mainstream place the legislation almost gives them a right to.

At present, the House of Commons education and skills committee is undertaking an inquiry in special needs. It is important that it listens to the personal stories, but this should not blur the broader picture.

Baroness Warnock may say inclusion has gone too far, but there is little evidence to support her. Today, 1.2 per cent of pupils are in special schools, compared to 1.6 per cent in 1984.

The opening of Pupil Referral Units means there are now more segregated settings than in 1984, while proportionally almost as many secondary schools have closed as special schools: 5.14 per cent of schools are special schools, compared to 5.95 per cent in 1984.

Despite this, many pupils, like Robbie, are studying in the mainstream - and rather than bringing down the standards for others, they have been shown to bring many benefits to their mainstream schools.

Of greater concern to the committee should be the bureaucracy at the heart of our system, and the pressures on parents to obtain the additional support all our schools need.

To find out about submissions to the committee go to www.parliament.ukcommonsselcomwitguide.htm