Inclusion is a State of the Heart

One of the things that helped me so much when Sam was born and everyone seemed to be feeling sorry for me, was the experience I had as a primary school teacher.  I had met, and taught, so many children.  I had learned first-hand that this idea, the ‘normal child’, was a myth.  They are all so different, so quirky, so funny and talented in all sorts of different ways.  OK, so I knew a bit more at birth about his health and possible problems, but I was on the same journey of discovery as everyone else.   So much of our early family life was dominated by the same stuff.  Broken nights, constant colds, yoghurt splats, tantrums, why won’t they eat/drink that?s.  It was easy to emphasise the similar.

The question of where he should go to school never bothered me.  I was firmly of the belief that, as a living expression of difference, he should go to the local primary.  At the time, great changes were happening in Special Education, schools were closing, and the expectation was that most children would be catered for in a mainstream school.  This, thought I, was a Good Thing.  What I wanted more than anything else was acceptance for him – if he was to be a part of his community then he needed to be in that community.

I put my hands up.  With the 20/20 vision of hindsight I freely admit that the inclusion of my son in a mainstream school had more to do with me than it did with him. I don’t feel guilty about that.   A child needs a happy family in which to thrive, and a happy family needs a happy mummy.  Being told by so many people in the early days that my lovely baby was somehow ‘less’ than he should be, that I had failed my job as a mother in producing him, and that the future was less secure for him than it was for everyone else’s ‘normal’ child, made me desperate to reclaim some of that normality into my family.   By the time he was 4 ½ we were still right in the middle of reclamation city.

Sam in Reception.
Sam in Reception.

I definitely had the feeling that for Sam to go to a special school constituted a Failure.  A failure in what I am still not entirely sure.  Maybe I felt that an admission to special school would somehow be an admission that I couldn’t cope, or that I wasn’t as good a mother as I was trying to be.  Maybe, lurking there at the back of my mind, was the concern that, if he went to special school I would be accepting what I thought of as an old-fashioned and out of date idea of what kids with Down Syndrome are/would/could be like.  The very thing I was trying so hard to resist.

I certainly remember feeling that I didn’t want my son hidden away like some dirty little secret.  My head and heart were full of tales where parents had failed to accept their ‘damaged’ child; I had met some parents who found it difficult to cope with a disability in their homes.  I wanted to challenge the assumption that all kids with Down’s were good for was a bit of colouring in the corner.  I wanted to show people that he was capable of taking part in a mainstream school; that to be different was an acceptable state.  I felt so strongly that the school community had as much to learn from him as he from them.

I had accommodated him so easily into my family (well, that wasn’t exactly hard – he was the family for the first two years) that I saw no reason that it shouldn’t be equally easy for anyone else.  I never thought about how difficult it might be to fit him in a mainstream class of twenty-five; he had a TA to keep him out of trouble after all.  How difficult could it be?

Maybe it was this attitude that made it difficult for the school to be truly honest with me about how he was really getting on.  I don’t know, but the thought did flit across my consciousness that they might think that he exhibited the same kind of behaviour at home as he did at school, and that I was happy to accept it, or that I saw it as normal. We certainly went through our rocky patches, me, Sam and the school.

But today, after he came with me to drop the little ones off, because he is full of cold and I can’t in all conscience send him to school, I can see that he certainly made an impression.  It is actually quite difficult to take him into the playground with me – especially if I have to get anywhere fast – not because he dawdles, but because so many people want to say hello.  We went to an open evening and never even got to see the teachers of the younger children, as we were mobbed by his previous teachers, all of whom wanted to find out how he was getting on, to talk to us about what they remembered from his time in their classes, to renew their acquaintance with our little boy.

The greatest success, though, is the way that the children accept him without a flicker of an eyelash.  Even though we decided that it was not the school for him, we liked the local secondary school, partly because so many of the enormous kids up there spontaneously said ‘hello’ when we looked around.  They greet him all over the place, when we drop his younger brother off at clubs, when he sees them at the park; they never seem to mind when he has a go on their bikes and scooters.  Or they never have a go at him, anyway.

One of the loveliest expressions of this acceptance as one of the lads was an impromptu football game that happened at the end of primary school every day.  The parents chatted while a multi-aged gang of little boys kicked a ball around, almost completely unsupervised.  The big ones mostly dominated, but little ones were welcome.  For most of his primary school days Sam watched, occasionally taking a free kick or fetching the ball when it rolled off the ‘pitch’. No-one said anything.  No-one batted an eyelid.  This little game grew and grew in importance for Sam.  He slowly inched his way onto the pitch, never quite brave enough to join in properly until he was in Y6.

At which point the game was banned by the health and safety police.  But there you go.  Can’t have it my own way all of the time, after all.


4 thoughts on “Inclusion is a State of the Heart

  1. What amazes me is the ability Sam has to remember names, not just those of the children in his own class, but those of the wider school community, the teachers, the school patrol lady.

    At the end of the school day, we stand on the pavement and watch the taxis go by taking children home from school. Sam waves to all the passengers, knowing their names and which taxi is carrying which child, which car belongs to which adult, whether a parent or a teacher! All his waves and personal greetings are enthusiastically acknowledged!

    My neighbours cannot remember HIS name, but HE remembers THIERS, putting them to shame.

    As you say, he is greeted by name in town, at the school gate, on the bus, in the shops, by the many people who know him and are genuinely interested in his progress towards manhood.

    Your struggle for him to be accepted in his community has been worth it, so keep up the good fight. Don’t be discouraged. You are a mum in a million.

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