We Don’t Have to Agree

I have a great friend who, despite the fact that we have children of uncannily similar ages, never really enjoyed going to mother-and-toddler groups.  She says that she always felt uncomfortable, and that, apart from the fact that she had a baby and so did everyone else, she never felt that she had anything in common with the other mothers. It wasn’t that she disagreed, just that she disconnected.  I know what she means, because I feel very much the same in many aspects of my life. I seem to spend most of my time feeling like the round peg in a square hole.

Take my children, for instance.  Thanks to the added chromosome of my eldest I was automatically catapulted into a different category than almost all of the other parents around me, whether I wanted to be or not.  Actually, quite a lot of my parenting life and energy has been spent reclaiming the common ground that I share with parents of ordinary children.  From sleepless nights and nappy obsession, we have moved on together to heartache over secondary school choices and shock at the cost of new uniforms.  These days I’m hearing a lot about strops and hormones, and it’s not so very different in my house.

I’ve never felt entirely at home in the SEN world, either.  Some of my friends have found great comfort in attending the various support groups and therapy sessions that we have round here (and there seems to be a lot), but I have never got very much out of it.  I have always had that nagging, persistent voice at the back of my head that says, just because we have children who have Down Syndrome, or other forms of disability, does not mean that we automatically have enough in common to make us friends.  Not that I mind particularly being the odd-bod contrary girl.  My dad would say that it is one of my defining characteristics.

At first sight, it would look as if I closely resemble other parents of children with disabilities, and in many respects, I do.  I, too, have had to readjust my expectations, to look again at what it means to be a parent.  I, too, face a range of added complications because there is an extra facet to my parenting.  But, just because I, as a parent, fall into this category, does not mean that we are all the same, either in our needs or our desires – any more than our children are the same because they have an extra chromosome.

When Sam was born I was handed a leaflet produced by the Down Syndrome Association.  In it, the text was at pains to point out that my child had inherited just as much from me and his daddy as he had from the extra chromosome.  In it, I read that he would share just as much genetic material as his future siblings, and that his resemblance to his family would be far more defining than his resemblance to another ‘genetic group’.  To me, this meant that, despite any label, any condition he carried, he was, and is, just as much an individual as you or me or anyone else you care to mention.  This means that, despite his label, his needs, and ours as a family, are individual too.

There is a lot of worrying going on at the moment amongst many parents of children with SEN as the government is in the process of redesigning health-and-education for children and young people with special needs.  In the new code of practice they are seeking to bring together health, social care and education in the interests of improving the life chances of children with SEN and their families.  I think this is a truly laudable aim.  I do, however, suffer from a large dose of cynicism over whether the aim is to truly include disabled people in our society or whether it is a money saving measure – time will tell, I suppose.

What is clear is that ‘Inclusion’ is the goal – what is not clear to me, is what Inclusion actually means, because it seems to mean something different to everyone.  For me, inclusion means being accepted, acceptable and valued in our society in all our multicoloured and multitalented glory.  We are all different, and we all have a part to play. Sam may not ever be the brightest academic tool in the box, but this doesn’t mean that he can’t participate in community life.  He gets people talking.  He makes them smile.  He makes the tired old man who feels that his life is over because he feels he’s no use to anyone help him out when he gets his trolley wheel stuck in the gutter.  He shows young men how to care for someone vulnerable who needs a hand with putting a bag on his back or crossing a busy road on the way to school.

For some people, though, I wonder if inclusion means that we should all be the same – or at least have access to all the same things regardless of our abilities and needs, and this is most often focussed, I believe, on schools.  And, having popped out with Sam at the other end of primary school, I’m not sure that this is entirely right.

While I would agree that the primary school is central to the local community, you only have to wait in the playground for your kids to come out at the end of the day to see that, I certainly don’t think it is the heart in the way it used to be. From the inside it may appear that way, but, slowly and surely, primaries are, I think, becoming more and more disconnected from the communities they serve.  At my children’s school the gates are increasing, all in the name of safeguarding.  The teachers don’t have time to chat, because they are overburdened with targets for this and planning for that.  Very few of them live in the same place they work; I certainly don’t.  Those moments where the school meets the outside world, the carols, the assemblies, the plays, the fetes, are all kept to a minimum because the time is wasted when it should be spent on valuable learning in classrooms.

I hear many times from parents, at the odd times I do manage to make it to a group thang, that they are reluctant to move their SEN child from a mainstream school into special education because what will happen to that child’s social life?  I have to walk away from that one, because inside of me there is Mrs Outraged from Tunbridge Wells who wants to blurt out, “When did schooling become about a social life?  When did it stop being about an education?”  I don’t consider it the school’s job to help my Sam with that.  I expect them to help him out with the three Rs.

I have found that I can’t debate what inclusion means with other parents of kids with SEN –partly because we all think different things, but also because I have too much respect for the fragility that is so evident amongst us.  I’m pretty sure that is the reason that Sam nearly went to the local comprehensive by mistake.  Everyone made assumptions about what we wanted, everyone seemed a little afraid of actually asking because, maybe, they worried about how we might take it.

They never stopped to ask whether we thought that having a minder for every moment of the school day represented a true inclusion to us.  We never talked about how it might feel to Sam to be the only one like him in a school of over a thousand children, or how it might feel when everyone else understands what is going on in the fast-paced-progress-every-twenty-minute lesson when you don’t, and you are still struggling with the zip on your pencil case.

But we need to debate it, openly and honestly, because otherwise we let others lump us together – we find ourselves without special schools when we really need them, we find ourselves with a policy of inclusion that doesn’t really work, because no-one has really asked, and I mean really asked us what it means to us, who we think it is for.  While I very much appreciate Cherie Booth taking up the cause of disabled children and their families, after reading her article in the New Statesman I was left with a feeling of disquiet.

I understand that Cherie is a lawyer and therefore it is her area of expertise, and I would not want in any way to play down the importance of laws that ensure, or at least attempt to ensure, equality for all.  But what I want to see is a change in the human heart. I don’t want Sam going to a school that accepts him because it is illegal for them not to.  I don’t want people around him who pay lip service to the concept of inclusion, or carry it out half-heartedly, because that is the path to failure.  I don’t want to see people so hemmed about with rules and regulations and labels and prescribed practise that they fail to see the child at the centre.  The very last thing I want to see for my fabulously individual boy is a one-size-fits-all approach.

Yes, it’s great that Sam went to the local primary school and is well known amongst the children and parents of his little group.  He knows them and they know him.  Job done in that regard.  But now, the focus is changed.  He needs an education that is truly tailored to his needs, and that, for him, can be found in a special school.  His needs, not ours, have become paramount.  So inclusion needs to change too.  Just because he goes to a different school does not mean that he is no longer part of the world.  He hasn’t entered a different dimension.  Now is the time for other agencies to step up.  It shouldn’t be just about the schools bringing people together, and giving children and families with SEN the chance to meet, mix and find out that we’re not so very different after all.  Inclusion means being included – by us all.

And unfortunately, I don’t think we can legislate for that. Yet.  I expect there will be someone collecting data about it somewhere.

Sometimes you can't see the wood for the trees, or, I wanted a picture and this was a nice one.
Sometimes you can’t see the wood for the trees, or, I wanted a picture and this was a nice one.

4 thoughts on “We Don’t Have to Agree

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