See told you. Sounds even sillier when I tell you he is 14 years old nearly 15.
Ben is Autistic and has severe learning disabilities. Throughout his entire life, he has only drunk at the same time as he has eaten food.
It’s important to add here that Ben’s diet comprises of 99% toast. Not an exaggerated figure, he eats toast all day every day, about two loaves if he is off school. His other foodstuffs include a few RichTea biscuits once or twice a week, Weetabix once a fortnight, plain fairy cakes once a fortnight, and Milkybar Buttons a few of the miniature packs per day in a bowl together.
People talk about their child being a fussy eater and only eating a few things, but when they add up the foodstuffs, the count rises quickly. For Ben, it is toast.
So yes, his diet is toast. Ben has not eaten a hot meal since he was two years old and decided he was no longer going to eat anything but toast. People talk about their child being a fussy eater and only eating a few things, but when they add up the foodstuffs, the count rises quickly. For Ben, it is toast.
Ben hasn’t eaten at school since he was 4, he used to eat his biscuits for lunchtime and drink his juice, one day he stopped eating at school, and because Ben wouldn’t eat, he wouldn’t drink.
This has continued. Since that day Ben has never drunk outside of the home unless we were on a family holiday with his entire bedroom setup in his temporary room including TV, PlayStation, CD collection etc. Ben has never had a sip of drink on a day out, which basically means we don’t go out if we do we have to be home within a few hours if its warm, a bit longer if it is not.
This causes us endless issues; we have learnt to adapt and just accept we can’t go out, but also as a couple, we can’t go out for long unless Ben is asleep, or he will want food and drink, and nobody else can make toast other than Mum and Dad. Food you can go without, fluids you do need. A while is ok, but it is not fair to leave him long.
We got married in May and the day was planned around Ben’s eating and drinking, we came back home twice to ensure he was fed and watered.
We just accept it’s a thing.
What would be perfect is if he could detach the drink from the food. Many of you will know about Ben’s little blue cup from the viral #CupForBen story last year, Ben is very specific about the whole food and drink thing, his routine is about as rigid as its possible to get.
So we can’t go out as a family, its hard to go out as a couple for more than a few hours, we have never had a night away, or a day, Ben won’t eat at school so he won’t drink at school. He has been dehydrated to the point of needing to go to hospital three times now. Many other times its been very close, but he has decided to drink at the last minute. Ben once gave up fluid by choice for 120 hours. That’s five whole days without a drop of drink. He was in a mess. Ben is complicated.
So it was just about the most significant moment of his life when we returned home from Ayesha’s birthday party to be told by his PA that while we were out Ben had drunk two cups of his juice from her. No food, just juice. We didn’t believe it and made her swear it was the truth; it just didn’t seem possible. This could quite literally transform our entire lives.
Ben had also asked her to make his toast, something he has only ever done once to another PA; nobody else has ever been allowed to make his toast. Even if we make it and they take it to him, he wouldn’t accept it.
BUT on this occasion, he actually drank his juice without any food, which is more significant than letting someone make food for him. This means he is starting to understand that food and drink are not exclusively linked and he can just have some juice if he’s thirsty. He could drink at school. We could go out all day, and he could drink and just be a bit hungry. We could go away for a night for the first time ever and trust that he won’t be poorly, he will have a drink at least.
Sure it needs to happen some more, and we are now planning how to repeat it, but the fact is he has done it once, he can do it again.
This is possibly the biggest milestone in Ben’s life. Even if the headline is a little pathetic!