Tuesday, February 5, 2019

L’ésprit d’éscallier: let’s get more attention for dyspraxia

There’s a French expression “l’ésprit d’éscallier” - the spirit of the staircase - when one thinks of the perfect response to someone after leaving the room. 

One of the many times I’ve experienced this phenomenon was at a parents’ and kids’ barbecue soon after The Boy’s diagnosis with dyspraxia when he was 5. I confided in another father about how concerned I was to which he replied “of course, all kids have to be diagnosed with something nowadays, don’t they.”

Firstly, I should say that this looks horrible written down and it made me angry, but I do think this was an incredibly misguided attempt to follow our instinct to add comfort by lessening the impact (don’t worry, it’s probably not that bad)! He obviously only succeeded in insulting me and my son in one comment.

I did manage to say something like “think of all the kids who weren’t diagnosed who should have been when we were kids”, (I often think about them, but I doubt he did). Overall I failed miserably in capitalising on a golden opportunity to educate someone and I've stood on that proverbial staircase thinking about what I should have said for nearly three years.

How do we make other parents understand that seemingly small achievements like these are absolutely huge to us?


The fact there were at least 12 kids there and my son was the only one with a diagnosis (he still is) is certainly one point I could have made. But other than that I don’t think showing my anger or demonstrating that what he said was insulting would have achieved anything. 

Here’s the problem: the dyspraxia community is justifiably frustrated by the fact we’re underrepresented alongside other conditions on the neurodiversity spectrum but just complaining to one another about the astonishing fact the word isn’t in spellcheck or autocorrect will achieve little. I’ve often thought that something like very publicly lobbying Microsoft/ Apple to get the word added could be one method of gaining attention. Or getting someone like Piers Morgan to proclaim on Twitter that dyspraxia doesn’t exist (if anyone is going to think that, surely it’s him) to open the debate. But how you do that, I’ve no idea. 

Our “Doctor Who moment” has been and gone and we’re back to the world where we have to change one mind at a time and be open to the fact that people might question our legitimacy. It's only by accepting that people are naive to this that we'll be able to change thinking. We have to demonstrate that this condition is very real and affects the lives of many people, and those who love them. And we can only do this by demonstrating our pride in who we are, and keeping our cool. 

So, my challenge to you: Imagine you were at that barbecue with me. What (up to 3) points should I have made to the other dad to educate him before I got on that staircase? You have to be polite, factual and constructive! Answers below or on Twitter.

5 comments:

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  2. Maxine here...
    I wish to God people would stop harrumphing about over-diagnosis because they don't understand the difference between general awareness/screening/doing a BuzzFeed quiz and going through an actual, clinical assessment. So, I'd have said that. And I'd have pointed to the immense emotional baggage that comes with actually seeking and coming to terms with a diagnosis of anything (for everyone involved) versus "just throwing it out there." It's difficult enough to bear that intense emotional weight at an intense, emotional time in your life without having some wally in your ear thinking you're making a fashion statement. I remember a time when someone I know was angry towards a transgender relative, accusing them of attention-seeking and having a midlife crisis, to which someone else I know said: "Whatever you think about it, you can be sure they didn't arrive at this lightly." Sums it up for me.

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  3. You're right, of course. It's incredibly frustrating. Like the transgender example you use, these attitudes exist and I think the only way we can change them is by accepting that fact. It's trying to keep calm when these conversations come up that I find difficult!

    I should say that I'm still friends with the dad. He gets on very well with both our kids and they look up to him - he no doubt couldn't remember the conversation if I brought it up ... but if I'd said that in the blog it wouldn't make a good story!

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  4. My 5 yo is dyspraxic. I usually agree with people who say lots of kids have diagnoses. But then I add, it doesn't always help ours to be understood though. Invisible disability is hard and getting 7-10x more fatigued than your peers is tough at any age especially 5. Generally, if I am lucky, they will start asking questions after their short wrist slap! X

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  5. Ps. Follow us on insta. @mel_wilde our dyspraxic tells everyone is he dyspraxic and amazing and what it is. So no anonyminity for him. His teacher is dyspraxic. Was huge!

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