Now He’s Not A Cute Baby Anymore

When Freddie was a baby, a hospital paediatrician who was examining him told the medical student who was present that one of the first things he would observe about infants with Down’s Syndrome is that they are all very cute.

But like all other babies, children with Down’s Syndrome grow up. This is something that people outside of our exclusive little club seem keen to point out to us. Many a time I’ve seen the comment, heard the question:

‘Ah, but what when they’re not cute babies anymore?’

It’s as though ‘they’ think we parents are so in thrall to the cuteness, so hypnotised by it that we can’t see past it and into a future where (they imagine) we will be embarrassed and ashamed by them. They ask the question as though abruptly snatching off a sticking plaster and poking a wound underneath, to force us to look and see it’s going to turn bad.

Freddie is now of an age where he is not a cute baby anymore. He will be legally an adult by the end of the year and will have the same legal rights as any other adult. He’s already physically an adult. Intellectually and emotionally, though, he is operating at a much younger level (probably about 6-7 on average, I reckon). So yes, these days I do find myself asking: ‘what when he’s not a child anymore?’

But for very different reasons than ‘they’ imagine.

I don’t concern myself with what other people think of Freddie; I don’t concern myself with whether other people are perturbed or made uncomfortable by the unexpectedness of his demeanour or behaviour (so long as no one is being harmed or directly inconvenienced, and to be honest I know him well enough to know that that is unlikely to happen). He has as much right to be in any given public space as anyone else. I’m never embarrassed or ashamed, I enjoy his company.

No - the reason I ask myself this question is because although Freddie will soon be legally an adult with all the legal rights that any other adult enjoys, he doesn’t have the capacity to keep himself safe and healthy within those rights.

He still needs a lot of guidance and reinforcement to keep himself safe and to encourage positive and healthy behaviour, to ensure he does the things he needs to do (go to the toilet, get washed and dressed, leave the house to go to appointments or college) and not just the things he wants to do (play on the tablet, watch TV), otherwise it could have negative effects for Freddie himself and make life impossible for the rest of the family.

In short, he needs some sort of ‘discipline’ (not physical, we have never used any kind of physical chastisement) but is at an age where I wouldn’t have dreamed of ‘disciplining’ his older brother and sister. I wouldn’t have needed to - as they understood the whys and wherefores of rules and responsibilities, and consequences of not doing the things they needed to do and the likely effect on others. But Freddie does not. I have a nagging dread of some third party coming along and telling me that now he is an adult I can no longer do the things that have worked well for us for so long.

So, the question I am really asking myself is, how do I keep him safe and reinforce positive and healthy behaviour without contravening his rights or his personhood as an adult? It can be done, I have no doubt, but will require a shift in thinking, a mental move to viewing him as a fellow adult before I can work it out.