What happens when it’s your child with SEN?

In October, It became apparent that child 1 has special educational needs. It probably was entirely apparent before, to be honest, but it was most certainly not something I wanted to consider. It’s a phrase – being a teacher – that should instil no fear in me. It just means they’ll need a bit of extra help. It’s important it’s recognised, so they can have the help. I’ve recognised it myself in children I teach, and I’ve been part of the team that gets them the help they need. In addition, it’s a huge umbrella term, ranging from very mild to very severe. It could mean almost nothing, and it could mean everything. I understand it completely as a term, and as a teacher. But as a mother, I didn’t want to understand it or for it to have anything to do with me. What, my perfect child, the boy I made from scratch and loved more than life itself? My sweet, serious little boy, who loved Lego and books and everything about space? My thoughtful child, who could play for hours by himself from really quite tiny, engaged by a train set or some cars or a mini construction site or some playdoh, and whose concentration amazed me? If you’d asked me when they were little, I would have said hands down that he would be the most academic of my two children. He thought about things. Being read to was his very favourite thing. He asked questions and really wanted to know the answers. Meanwhile his sister wreaked havoc, leaving a trail of destruction in her wake and never standing still long enough to have an actual conversation. Of the two now, he’s still the more thoughtful, the more interested in history and science and nature and books, the more perceptive, and with the greater attention span. My husband and I call him the easy child (as in ‘you can’t complain about today, you had the easy child’) because he’s so much less demanding than his sister. But amongst all this, all his abilities and strengths and thoughtfulness and perception, he has special educational needs. At times during our journey, I’ve found this a very dark place.

These needs are quite moderate. I say this not to make myself feel better, but because I am so aware that there are so many children who have far, far greater obstacles to overcome, and I don’t want to sound like I really don’t know this. I do. And I’m grateful for my beautiful, healthy children, who seem really fine in every other way. And I feel dreadful for parents who have far more frightening, debilitating or just simply greater issues to overcome with their children. But this doesn’t take away from the fact that he has a problem that makes life at school and in other areas difficult for him. He has an issue with fine and gross motor control which means – mostly – that he can’t write very well. He also struggles with the co-ordination necessary to swim, ride a bike, keep in time to any kind of beat, or run very fast. All of these things seem quite minor, until you have a child who can’t do them. And this is mostly because they affect his life in a way that I really don’t want them to. They made him think he wasn’t good at things. They made him a child who would always follow rather than lead, who would accept treatment by his friends and other children that was unkind and unnecessary. They made him a child who had great fears, of the dark and jellyfish and frogs and getting his hair washed and having his toenails cut. They made him a child who misbehaved at school because he couldn’t do what the other children could. They made him a child who wouldn’t pick up a pencil, not even to draw, because he already knew that it would hurt and that failure lay somehow within it.

Seven months after his first appointment with a paediatric occupational health therapist, he is a very different child. He went to Hemispheres, a clinic that operates (simply and probably not very well put) on a framework of research surrounding fourteen basic reflexes that children have at birth. These reflexes should settle in a certain order and by a certain age (think of the Moro reflex – the startling one that disappears quite quickly in newborns) but in some children, they do not. My child was apparently one of these, and so had basic neurological immaturities that were holding up his development. At 5 years and 4 months, his fine motor control for handwriting, for example, was around 2 years and 11 months. We embarked on a programme of exercises designed by the OH therapist to tackle these, returned every month to be reassessed and given new exercises, and started a specialist handwriting programme.

It has been far from easy. He has always been happy to do the exercises, as they so quickly made him better at things, but getting him to do the handwriting has been a combination of bribery, blackmail, and often screaming frustration. (Eventually we settled on one minute of handwriting earns one minute of Temple Run – works like a charm) And for me- finding the time and the energy to do the exercises every day amongst the rest of my life – well, that’s been difficult. And tiring, and often frustrating. We’ve gone through a lot of smarties in bribery and a lot of tears in tiredness. We’ve had months where he seemed to take great leaps forward and months where he stalled and I wondered if life would always be like this for him. But now – now I can see why we did it.

There are so many ways in which he seems like a different child. Quite aside from the fact that he can write now (still not as well as he ‘should’ do at his age but he can write, and his speed and stamina, which have been the greatest issues, are improving all the time) he’s a far happier child. He’s confident. If his friends aren’t nice to him, he tells them so and walks away. He sleeps with a lamp, and not the main light, on. He can swim. He can run fast. He reads two books in a day. He uses scissors and makes things. He draws. He forms good relationships with other children. He behaves in the classroom. (Usually) He can write in much more detail. He doesn’t cry when he has his hair washed, and he lets me cut his toenails. When he plays, he thinks about the other child and amends his play to suit them in a way he was entirely incapable of before. He smiles and talks to people he doesn’t know very well. He can write his friends’ birthday cards.

Some of this is undoubtedly growing up – the difference in maturity anyway between four and five is quite startling. But much of it is due to Hemispheres and the fact that his teacher was experienced enough or good enough or simply brave enough to say to me that he needed help, and consequently the work that we have all done over the past seven months. We’re a long way from done – but we’re almost done with this phase: another month of exercises, then hopefully a break while we continue with handwriting, then even more hopefully a discharge.

But in the meantime I look at my different boy, with his little face shining with confidence, full of all the things he can do rather than those he can’t, and I think how grateful I am to his teacher who told me to get him help, and to his lovely therapist who gave him the help he needed. No one wants a child with special educational needs, who needs extra help, who needs some kind of diagnosis. But when you have one, you realise you’re not alone, and there are people who can give you a way out of the dark. You just have to have the courage to find them.

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