They say that having your own child makes you see your job as a teacher differently, that it changes your perspective and makes you more understanding. This was certainly true for me, perhaps even more so than for others. You see, my son, my firstborn, came with a little extra.

Sam was born with Down’s syndrome and all of a sudden nothing was quite as it had seemed. Although I had always known it in an academic sense, here was a child, my own child, who reminded me every day that there was no such thing as “normal”. Unfortunately some people don’t feel the same way, and they single us out for not conforming to whatever they believe is the norm. I am occasionally stopped in the street and told that my son is an angel (erm, no). Or I am “reassured” that he will always be with me (please, no). It doesn’t happen too often, but it does happen.

So, seeing Sam on his first day at the local school was an important moment. There he was in his little uniform, “included”. There we were, his family, the same as everyone else, watching our boy make his way through the doors just like all the others.

What’s the problem?

We, the parents of included children and our predecessors, have fought long and hard for our children’s right to take their place in the mainstream world; to no longer be deemed ineducable; to be accepted and acceptable. We have achieved what we wanted, and it has been enshrined in the new special educational needs and disability code of practice; most children with SEND will be included and educated in their local mainstream school. So why is there a slow but steady trickle in the other direction, back towards special schools? As a teacher, a parent and a parent of a child with special needs, I thought I might be able to shed some light on this.

The first reason is training. Let’s be honest: mainstream teachers simply aren’t trained to deal with profound needs. Children like mine, who have severe and complex learning difficulties, are a challenge in terms of teaching, behaviour and the classroom balance. And that’s on top of the high-stakes testing teachers face. Classrooms with 30 children - children who must all follow a prescriptive curriculum - are not flexible places. I know. I work in one.

The next issue is resources. Many of our school buildings are old and difficult to negotiate. I’ve taught in two-storey Victorian buildings, mobile classrooms with and without toilets, and classrooms in various states of repair; not one has been set up for someone who might need a hoist to get out of a wheelchair. It can be hard to adapt the rooms in your average school - unless it’s to use the disabled toilet to store PE mats.

The yearly nature of schooling is a problem, too. Like it or not, there is an element of “surviving the year”. Your child doesn’t get on with their teacher and isn’t doing as well as you would like? Hey, it’s only a year. You’ve got a nightmare class of pupils you find difficult to teach? Hey, it’s only a year. Before you know it, the final term is over, the teacher is heaving a sigh of relief and the parents are busy fighting the next set of fires. Nothing changes: the problems that ought to have been solved live on, ready to ensnare the next unwitting victims.

Schools try to be helpful and work hard to be accommodating, but this in itself causes difficulties. How often do we hear of “velcroed teaching assistants” or “learned helplessness”? And yet, how often do we find ourselves falling into the very same trap, despite our best intentions? I came across this phenomenon when Sam first started school and other people did things for him, things I had spent time teaching him to do for himself.

“I remember one conversation [with a teacher] so clearly,” recalls another parent. “I was saying how my son would happily wrap any adult around his little finger. `Oh no, not me,’ she stated, while packing his school books in his bag for him.”

We don’t want to fight

Indeed, it is on this parent-school dividing line that much heartache lies. The relationship between the parents of children with special needs and the schools they attend is often characterised as a battle. As a parent I’ve been labelled pushy, fussy, difficult and precious. But parents are under pressure. Teachers are under pressure, too. Add to that a challenging child (I don’t mean in a pejorative sense) and what you have is a car crash waiting to happen. Without the language of shared expectations, we exist in a state of perpetual misunderstanding and resentment - on both sides.

This is exacerbated by the parent’s feeling of disappointment. When we send our children to the local school, what we want is public acknowledgement that they are worth as much as every other child. But what of the benchmarks of “Planet Normal” - friendships, play dates, birthday parties and after-school clubs? In his time at primary school, Sam had few birthday party invitations and only one play date, and those were confined to the infant years.

In a school system where the emphasis is placed squarely on academic results - where the pressure is on from the moment pupils step through the door - where is the space for children with difficulties to learn how to be friends?

Communication breakdown

Put all these things together and add the odd unexpected disaster and, for parents of included children in mainstream schools, what you have is a monumental struggle. It’s a struggle to communicate, to explain, to ensure that all is working properly. I love my son from the top of his greasy, unwashed, teenaged head to the tip of his uncut toenails, but life with Down’s syndrome - or ASD, ADHD, sensory processing disorder and any other label you care to mention - is struggle enough. Just raising children, especially if you have multiple offspring, is struggle enough.

When I wake after the millionth disturbed night, the last thing I want is another battle. It’s hard enough to get Sam, his brother and his sister dressed, fed and ready for the day without an extra source of conflict. It’s hard enough to keep my head above water. I like a robust debate as much as the next person, but not in the playground and not in the classroom; I want to work with my child’s teachers, not fight them. I’m too tired. I haven’t the energy.

A place of hope

Special schools offer an alternative. It took a while for me to realise that sending my son to a mainstream school wasn’t going to ensure his effective inclusion. It took a while for me to discover that the special school is a place of hope and joy and celebration of who we are, warts and all. And it took a while for me to realise that the special school is out there, at the events and in the local markets, getting involved and inviting people in.

“Our special school is a respected and accepted part of the community,” says Matt Keer, a parent in Berkshire. “It’s been there for two generations. Although much of what it does is specialist, it has reached out: joint lessons with some mainstream schools, joint drama productions, sharing arts facilities, taking part in inter-school competitions.

“Businesses are more than happy to offer pupils meaningful work experience. Go to the pub and people talk about the special school with pride; they genuinely see the school as an asset to the town.”

It makes me sad that it took me such a long time to stop being afraid of the special school and what it might mean. In my head, I had it muddled up with the sort of institutions where we used to lock people away so we could pretend they didn’t exist. But when the time came, when we walked through the door of Alderman Knight School (see panel, left) to have a look around, our choice couldn’t have been easier or more obvious.

Today, my son works with people who understand the idea of agency. By that, I mean the decision-making we adults take for granted and how people living with disabilities have so little of it. They give Sam the dignity of making decisions wherever possible; they see him as a whole person, not one who is two-dimensional and stuck in a state of permanent childhood like the boy in the book Flat Stanley.

In a small school with a small number of pupils, there is little to no chance that he will get lost on his way to the toilets or get in a muddle with money while paying for his dinner in a crowded cafeteria. Without a personal teaching assistant, Sam has the chance to make friends of his own, friends who haven’t been filtered by the constant presence of a well-meaning adult. You never know, he might even get himself a girlfriend one of these days.

I don’t need an Ofsted report to tell me that Sam’s school is outstanding: the fact that he chose to wear his school uniform on Boxing Day is testament to that. He is always keen to go, no matter what. And we know, thanks to great communication, that he doesn’t get an easy ride when he’s there. Some weeks he seems to be constantly in detention for something or other, but he still wants to be there. It’s his school. And it has changed all our lives for the better.

Caught in the crossfire

I don’t blame the system or Sam’s mainstream school for the failure of inclusion. There was never an incident that tipped me over the edge. But, you see, because I am one of them - a mainstream teacher - I know things. I know that my profession, my wonderful profession that does its best under all circumstances, is too tired, too busy and under too much pressure. The blur of so many competing demands means we sometimes can’t see the wood for the trees.

We work for a Department for Education that sends us mixed messages. How do we meet the needs of children who have special educational needs and disabilities, yet at the same time demand higher and higher standards of “mastery” that is measured by data displayed publicly on league tables and scrutinised by powerful inspectors? We become powerless participants in a war of unrealistic expectations on our schools, the victims of which are our society’s most vulnerable children.

It was not until I had children of my own that I realised schools and teachers are not, and neither should they be, the solution for everyone and everything. Inclusion as a concept - a public and proper place in society for all people - is bigger than schools. It’s football, Brownies, drama club, swimming. It’s doctors, midwives, health visitors and the way they tell you news. It’s community centres, workplaces, walks in the country and camping. It’s neighbours and community; society not individuals. Schools play a part - but it’s only a part.

Nancy Gedge is a teacher at Widden Primary School in Gloucester

`We are a true part of the community’

Clare Steel, headteacher of Alderman Knight School (where Nancy Gedge’s son is a pupil) in Tewkesbury, Gloucestershire, writes:

Eight years ago, Alderman Knight was under threat of closure because of the national inclusion agenda. However, as a result of fantastic support from the community and the local authority, the school survived.

Today, we have an amazing purpose-built learning environment. We are a true part of the community and a key element of the county’s provision for children and young people with additional needs. We are on the same site as a mainstream secondary, which allows opportunities for shared learning and social interaction.

We provide extensive outreach and in-reach support to our local primary schools, and support from the community helps ensure that our pupils get the best possible opportunities outside school.

This sense of belonging contributes to pupils’ feelings of self-worth, and helps them transition to adulthood and playing an active part in society.

`Children can just be one of the gang’

Jarlath O’Brien, headteacher of Carwarden House Community School, a special school in Surrey, writes:

Meeting parents who are looking for a secondary school for their child is a major part of my working week. Most have never set foot in a special school before (why would they?) and can be nervous about what they might see.

Often armed with reports from therapists and educational psychologists, or an education, health and care plan, they are looking for a school that fits. Many might feel that a special school is a second-class choice.

“You don’t do GCSEs,” they say. We do. Or “there’s no work experience”. Actually, all students do a month, and some more. “College?” Every week.

Tours usually prompt a change of heart. “Your school is just like a normal school. I can see my child learning here,” they say.

That’s what it boils down to for parents: a vision that their child can move on from being that kid and just be one of the gang - enjoying what they are entitled to without being socially and academically isolated. They can be included. Accepted.

@jarlathobrien