Ben was ill recently, which meant he was off school and had to come with me to take Max to nursery. He was a trooper, considering he had a fever, and was not as grumpy as I expected as we walked round the corner.
Max goes to Ben’s old nursery and since Ben only left a year ago lots of the kids (and most of the staff) still know him and are excited to see him. This means he gets greeted enthusiastically by various adults as we enter, and then lots of kids come over to him as we go in to the playroom. I think I enjoy this familiarity more than he does.
This time we entered the room with Max holding on to me, because he wanted to go home, such is the whim of a 3 year old who likes nursery. As I negotiated doors that don’t stay open, a wheelchair with one hand, and a clingy Max with the other, a whisper went round the room that Ben was here. A little gang of 2-4 year olds came over and crowded round Ben, touching his legs and holding his hands. Truth be told, Ben isn’t hugely keen on this level of physical proximity from a gang of small (unpredictable) small children, but it’s quite a lovely thing to watch.
Then, a girl (probably 3 years old) pointed at Ben’s face.
‘That’s disgusting’, she said.
She meant the dribble. Ben’s lack of control of his tongue and mouth mean he can’t talk or eat, and he also can’t control his saliva. He can’t stop dribbling, and in fact if he’s excited, nauseous or stressed (such as when six children are crowding him) his tongue whirrs around in his mouth, increasing the amount he dribbles.
‘No, it’s not,’ I said. ‘It’s just dribble. He’s dribbling because he can’t help it. Ben’s not disgusting.’
Then I dabbed his mouth with the bib he always wears, got distracted by Max’s ongoing emotional crisis, and the kids talked about something else. While attempting to engage Max in something that wasn’t holding on to my leg, Ben lost patience with all the hanging around combined with fever and children, and burst in to tears. Max started crying in sympathy (increasingly common these days – really sweet but emotionally taxing) and a lovely nursery worker came to take Max out of my arms so that I could take Ben home. It was a great little outing.
Obviously that girl didn’t intend to be mean. She isn’t old enough to realise any of the implications of what she was saying and is just repeating what she’s been told at some point. I mean, if we took everything small children said as insults, then the locksmith who came to our house yesterday might have walked out when Max told him he was a bum, rather than fitting the window locks which will hopefully prevent us being burgled again. [Side note: they stole Ben’s iPad which we rely on daily. It’s unfeasibly irritating.]
This incident made me think again about how we manage Ben’s dribbling. In the past we have put Hyoscine patches behind his ears, which dry up secretions and so reduce the amount of saliva coming out of his mouth. However, Ben has a tendency towards a blocked nose at the best of times, and after nights spent holding him next to a hot shower in order to clear congestion, we didn’t feel reduced dribbling was worth difficulty in breathing.
In the meantime, we’ve just got used to it. Ben always wears a bandana bib to absorb any dribble, it’s become his signature look. The amount varies hugely – some days he can wear the same bib all day and we barely notice an issue, other days the dribbling is almost constant. We dab his mouth with the bib without even noticing.
But mainly, we haven’t done anything about it because we’re not sure Ben is that bothered. He occasionally gets a sore chin, but it’s easily treated with cream. I’m not convinced that Ben realises he dribbles, and if he does I don’t think he thinks it’s a problem. There are options to surgically reposition salivary glands, or take or increase medication. or inject Botox. All of these would involve recovery periods, side effects or disruption. Is any of it worth it if Ben doesn’t perceive a problem?
Unless. Did he notice the girl saying he was disgusting? How often does that happen that we don’t hear or realise? People stare at him sometimes – is this because of his disability or because he’s dribbling? Would reduced dribbling reduce the staring, or decrease some people’s level of disgust? How big a deal is some dribbling – I come from the perspective of having recently toilet-trained a small boy, so a bit or dribble is not high on my list of horrible things. If you’re an adult and really offended by some saliva, maybe you need to piss off.
My instinct is that we don’t interfere until Ben is annoyed by his dribble, or becomes aware of others noticing it. We can’t put him through invasive procedures or risk side-effects of drugs because we, or others, don’t like a bit of saliva, but I’m five years in to a world of bibs and dribble and am perhaps uncommonly blind to the issue. And maybe I haven’t factored in the honesty and unintended insults of children.
One thought on “‘That’s disgusting’”
This is such an honest and refreshing little blog. Keep writing you and Ben are inspirational. X