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...

How I became a mummy bear

Here is the picture that made me decide to start writing this blog. Because I never set out to become a mummy bear. I was such a nice Christian woman. Not that assertive despite being a lawyer. Likely to accept what others told her. Now there is the wonderful and nearly 5 year old Nathan who popped out a bit special. He has cerebral palsy on the right side of his body meaning he cannot yet walk without support and he struggles to use his right arm at all. On top of that the muscles in his mouth don't work well and he struggles to express all the thoughts his bright little brain is thinking. An independent and rather determined young man he is still vulnerable and needs protection and support. 

I first became aware of the need to become a mummy bear when he was just 4 weeks old. He had come home from hospital a week or so before and was discharged on anti-convulsant medication as he had neonatal seizures. In hospital he had been getting special paediatric alcohol free medication. Now he was 'in the community' suddenly that was not available basically because the computer said no. At first I accepted it, but it niggled away at me. One evening I did the maths and worked out that he at 4 weeks old and weighing less than 4 kilos, with a liver that was already recovering from whatever trauma had also damaged his brain, was being given the alcohol equivalent of half a pint of beer a day. In a health care system that dictates that children must be given drugs full of artificial sweeteners because sugar is bad for their teeth they happily gave my baby alcohol. I got A Little Upset. Which cumulated in me having a tearful meltdown in a busy Boots chemist. 'I Just Want The Best For My Baby'. With a sympathetic pharmacist on my side I found out about special, handwritten prescriptions for more expensive drugs that are not on the computer. She found out what drug Nathan needed and gave me paperwork for the GP. I wrote a heartfelt letter to the GP. I got my handwritten prescription from the GP and my tiny son could now supplement his breastmilk with alcohol free medication. I sat back a bit stunned. Pleased with my achievement but shocked at this need to fight.Blightely having assumed that everyone else would also do their best for my baby. Little did I know that the fight was only just beginning...