Safety in numbers

Watching the gulf open up between your child and his peers can break one’s heart. Noticing his awareness of all that’s going on and the increasing anxiety surrounding his condition leaves a feeling of swimming against the tide. I try so often to demonstrate his achievements and his considerable talents but he mainly notices the differences. “I’m a bad parent” must have gone through my head more times than I care to count as I feel like an onlooker in my children’s existence, constantly fighting on their behalf and getting beaten to a figurative pulp by the education, health and social systems. Another wait for another limited service, trying to get my kid to the front of the queue which stretches round the corner. 

[I need a paragraph break to breathe]. 

Chastising myself frequently for losing my temper when there’s a meltdown over, for example, the fact a restaurant doesn’t offer the spicy crab linguini in a children’s portion. And the family nearby making sympathetic faces, pointing to their six-year-old daughter - hypnotised in concentration, head-down buried in her colouring in - and saying “she’s like that all the time! We know how it is!” I bite my tongue, resisting the urge to say “you’ve no bloody idea!”

[Paragraph break to hyperventilate into a paper bag]. 

Seeing the effect it has on his brother, who can’t understand why his outbursts are less tolerated by his parents and his resultant, understandable sense of injustice. And my friends. My wonderful friends. They’re fantastic. But their method of support is to try to say “it’s just kids”. But it isn’t. It’s dyspraxic kids. It’s neurodivergent kids.

[Breathing gradually returning to a resemblance of normality].

Finding support 

Recently, a colleague and I started a group at work. Her son has diagnoses of ADHD and ASD and we put out a call for similar parents to join us for chats to share experiences, signpost information and generally let each other vent. The four of us meet for lunch once a month and the sense is one of unity. We all feel tremendous pride in our children at what they achieve in a world that’s increasingly supportive but still so far behind where it should be when it comes to supporting kids like ours. 

It’s such a relief to selfishly acknowledge just how difficult it is, the effects it has on your entire family and hear like-minded people say those things on your mind that you don’t really want to think. 

Success takes many forms 

Thanks to our community 

One other thing I find helps me is seeing what the dyspraxic adults achieve who I follow on Twitter. Yes, there are the ones who have reached success in singing, comedy or tv presenting. But there are people staring university, completing masters degrees, raising families, holding down relationships/ marriages, writing about their experiences, becoming advocates (or activists) for the dyspraxia cause. These supposed “normal” achievements are so important. And I can safely imagine that their parents are so proud of them. 

So what’s my point? I don’t really know, but this Dyspraxia Awareness Week, whether you’re a person with dyspraxia or a parent or someone else part of our community, just take some time. Take some time to appreciate that you’re part of a community that more or less “gets it”. And take some time to appreciate that, if we can make a few more people aware, we’ll all grow in so many ways. 

Cheating eating

"And for his next trick, my son will eat smoked salmon with dill and capers, followed by an entire cheese board, including Roquefort and Gruyere!"

The Boy can make other parents really jealous. As they're trying desperately to get their their kids to eat a cold chicken nugget and some fries, before finally giving in to the inevitable ice cream, my eight-year-old stuffs his face with what the adults are eating - the more exotic the flavours, the better.

You name it: chilli, olives, sundried tomatoes ... whatever, he'll hoover up everything in front of him. Well, apart from apples, pears, bananas, nuts ... although I think this is a texture / smell thing. But generally, the sensation of exciting flavours seems to stimulate his senses in a very positive way.

It's something that makes me very proud and I know that, in this regard , we've got it easy. We've been told on enough occasions and we can see with our own eyes how despairing it is for parents whose kids struggle with eating for various reasons - from other neurodivergent conditions right through to just fussy. What's more, The Boy has passed this gift onto his brother and the two of them shovel food like there's no tomorrow.

It's a pleasure to watch my son demolish a cheese board

The thing is, of course, the "shovel" is a preferable feeding implement to conventional cutlery. For the dyspraxic kid, the act of getting both hands working on different things with a knife and fork (prod and saw, prod and saw) is a co-ordination nightmare. The adaptive cutlery and occupational therapy have helped, but it's been limited. Instead, he cuts a few pieces of food under duress and then just forks it with his right hand into a half-closed mouth, rendering his face covered in the contents of the exotic dish in front of him.

It must drive him potty ("no fingers! Fork, please! Wide open mouth!") the amount of demands his parents place on him at mealtime. Occasionally, he'll have a good day or we'll make a conscious effort to ignore it for the sake of family dinner unity ... but I'd say we don't do very well and could create a very anxious eater if we're not careful.

This blog is yet another plea ... if anyone (adults with dyspraxia, other parents, occupational therapists etc) have any tips on how to make it easier for him - how the only focus will be on what he eats not how he does it - then please let me know. Whether tips for what we should say or any interventions, answers below or via Twitter (@dyspraxiadad) please...

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.