Saturday 15 June 2013

The pain of not being able to communicate

The last two Thursdays Nathan has come home from school in tears. The first week he was fine on the bus and burst into sobs on my shoulder just as the driver was saying how good he had been, the second week he started crying on leaving the last stop before our home. The cause: The person putting his splints back on after swimming not getting it right and him being in pain as a result. We found this out quite quickly, because the only other time something similar happened there was something stuck in his shoe so we went feet first and found indeed his heel several inches up and his toes squashed.

It is hard for most people to understand Nathan. He relies purely on his limited and unclear speech, not very keen to use signs or even the speech software on his iPad and he clearly had not managed to explain that his feet were hurting. The tears were relief that mummy and daddy would now make it ok. The second time he kept crying for a while after we took his splints off. We sensed frustration in the tears too.

He doesn't help himself though. Apart from the speech issue he is also currently obsessed with the scuff marks on the noses of his shoes. He says that his shoes are hurting. So apart from understanding what he is trying to tell you, you then have to figure out if his shoes are hurting or his feet!!

I phoned his longstanding and rather wonderful physiotherapist and like all good professionals working with children she listens to parents. A plan of action was quickly formed and splints are now checked several times a day in the classroom to prevent him being in pain, an attempt is made to get him to hand in a card to say his feet are hurting, a clinic appointment has been made to review his splints. New boots will be ordered. His physio has found that if you ask Nathan if his feet hurt he gives a pretty clear answer! So it will all come together again and another problem solved.

It's one of the toughest bits of having a child with special needs. Finding out they have been in pain and unable to do anything about it. You don't realise how much our society relies on verbal communication until your child cannot fully take part in life due to speech issues. Nathan is a fantastic communicator and has from a young age used everything he can (voice, facial expression, hands, body) to express what he wants. But sometimes what he says requires an adult to give him their undivided attention just at the time when he is trying to express something. And that does not always happen in real life.

He is a trooper and very determined. He will get there. But this is why we worry more about his speech than about his walking...

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