With a non-verbal child you become accustomed to watching out for signs. Sé feels pain the same as everybody else, but he doesn’t know how to express it, so we watch him and mind him and do our best.

Right now, he’s got something brewing. How do I know? Because he’s being nice and helpful. Sé is a… How shall I put this? He’s a difficult person. We often hear people use sweeping statements about people with Down Syndrome – “They’re very loveable”, “They’re always smiling”. Well, not only is that a bit insulting and reductive – every person is an individual, including any person with Down Syndrome – its also absolutely not true when it comes to our Sé.

He is difficult. His default word is “No!”. He needs to be cajoled and coerced into doing things, sometimes even things he really wants to do – he just can’t do things without being difficult. But when he’s coming down with something, it’s like he forgets to be difficult. All of a sudden, he’s kind and helpful and will give you a random hug – usually unheard of. He gets out of bed in the morning without a fight, gets dressed by himself and potters down to breakfast.

We’ve had reports from school this week that he has been fantastic. Best behaviour all round. These are all familiar signs that he’s coming down with something. He has missed the Christmas concert in school for the past few years because of illness, but this year is especially important. This year he’s a shepherd in the school concert and he is only delighted with himself. So we’ll keep watching him and minding him and doing our best to get him to his Christmas show, where he’ll be the best shepherd Sé there ever has been.