You may have read the story of the father who was desperately searching for a replacement beaker for his autistic son. He will drink only from a very specific, no-longer-manufactured cup, and only at home.
“Oh no!” the internet cried.
“How awful?! How restricting! Already prevented from going out because their son won’t drink, now he won’t be able to drink at home. We must help this poor, desperate family!”
And we must. So we did. We shared the posts on social media, and the father’s plea went viral. In pretty much no time, no less than seven beakers were located and are winging their way to the family as I write. They’ll be able to stockpile for the future. Brilliant.
And we all breathed a collective sigh of relief: “Aah! How amazing when we all work together to make a happy ending!”
And it is. It’s one of the massive benefits of the internet and social media particularly: quickly raising awareness of a situation and creating a call to action.
It was an awful story, with a heartwarming ending, which is fab. But… what many people don’t realise is that this kind of thing is happening in countless homes every single day.
I know of children who will only eat one, very specific, brand of food. One day, mum goes to do the shopping and picks up the usual brand, only to notice a banner across the corner of the box proclaiming “new, improved recipe!” And her heart sinks, and her stomach drops, as she knows that this is not a good thing in her world. ‘Improved’ means changed, different. And different is not good. Different is wrong, and she knows there’s a very good chance her child will notice this difference and there’s a chance her child will now refuse to eat this one, guaranteed thing he will always eat. She worries about the possible consequences of this and she feels panic.
Or there’s the child who will religiously turn on the TV to his favourite channel each night after school to watch his favourite programme. It helps him unwind from the stress and anxiety of the school day. It’s his release. Only the schedule has changed and his programme is no longer on, replaced by something else. A pretty trivial thing to most children, but to some, it feels as if the rug has been pulled out from under them. How can they trust anything now?
Then there’s the child who will only wear a certain type or colour of clothing. To wear something different can cause actual, physical pain and discomfort. Or maybe it’s a fixation. But they grow out of it, or it becomes so threadbare from all the washing it endures, that it becomes unwearable. They don’t make that kind of top any more. They don’t stock those trousers in the right size. They only make them in blue now, not red. And the child has no choice but to wear something that causes pain and anxiety, which impacts on, well, everything.
We are quite lucky that Tink has always been quite adaptable to change. However, as she gets older, she’s becoming less so. I have experienced those panic moments. When we’re down to our last “fruit pot spoon” and Asda are out of stock of the one flavour she’ll eat, I’ll drive round other supermarkets looking for more, otherwise the lunchtime routine will be ruined (and it’s the only ‘fruit’ she’ll eat, so I really don’t want her to stop). I panicked when none of the usual places had any ‘Zinger’ fruit sticks in, so I emailed the manufacturer, desperately hoping that they weren’t ceasing production (they weren’t – it was just a re-brand, and they very kindly sent me a box ‘to try’ as I’d explained about Tink. Still the same inside – just the outer box was different – phew!)
These things may seem trivial to the uninitiated, but to families like ours it’s a very real fear that a slight change, or the unavailability of something so crucial to our children could cause untold misery. In the case of the blue beaker, it really could have been life or death.