Dyspraxia and how it feels for me

This post is written by my son, The Boy, aged 9 for Dyspraxia Awareness Week 2020. I guarantee you won't see a better post on the Dyspraxia Dad blog.

Dyspraxia is quite tricky to live with but you’re stuck with it for the rest of your life. If you try harder and harder eventually you’ll succeed. Over the summer I learned to ride a bike with my bike riding teacher, Callum.

The Boy, on his first ever day riding a bike, with Callum

Dyspraxia makes me feel annoyed and sometimes I don’t even notice it’s there. At school I struggle with maths and I always come last at sports day but I really enjoy it because I get to move about. I get nervous sometimes about mistakes and things that are not real. 

The good thing about having dyspraxia is you have a imagination. I’m very creative and I like films.

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.

What’s your top kids’ movie of all time?

Barry Norman* I’m not, but The Boy’s dyspraxia is one of the reasons he and I have developed a shared love of children’s cinema. Movies offer an ideal escape into an imaginary world, which he can replicate with his own characters and derring-do adventures. 

This is the list of the top films we’ve watched together - some at the cinema; some at home. It mightn’t be my view of the best film, but instead the best memory of the whole experience. 

10. Solo: A Star Wars Story: Star Wars is a more recent discovery for The Boy and there should be no argument that The Empire Strikes Back is the standout movie of the franchise. But Solo was at the cinema and The Boy shouting “Chewie!” at the top of his voice on the Wookiee’s appearance - along with Alden Ehrenreich’s valiant attempt at the impossible task of filling Harrison Ford’s size 9s - made it particularly memorable. 

9. Trolls: A great soundtrack and all-star cast make this film a winner. It would be higher but I'm not allowed to watch it anymore - it makes the boy cry! 

8. Inside Out: For those who remember The Numbskulls in The Beezer, this is a similar premise - characters working inside your head, controlling emotions. A Pixar Great with humour, teary stuff and an important message for kids and adults alike - sometimes it’s necessary to feel sad. 

The Numbskulls: forerunner to Inside Out

7. Despicable Me 3: Once again, a trip to the cinema (this time a surprise) means the far superior earlier films don’t make it. But this is still fun, especially thanks to its 80s soundtrack, including Bad by MJ and Take on me by Aha. Plus, The Boy loves Minions so who am I to argue?

6. Incredibles 2: Yet again a treat at the cinema forces a lesser film to leapfrog its original. But this sticks to a winning formula - superpowers to entertain the kids and the conceit that even superheroes have childcare stresses for the adults. This time, Bob is a stay-at-home dad and Helen is the homesick breadwinner. 

5. Up: For its tear-jerking opening sequence alone this film easily makes the top 5. Pixar do it so well - good versus evil, losing love and finding friendship are staple storylines to make sure you love some lovable, flawed characters

4. The BFG: The Steven Spielberg one. The book was published when I was 9 so has particular affection. We won tickets to the premiere in Leicester Square, memorable for The Boy heckling The Great Man behind Saving Private Ryan from the fifth row with: “why’s this man talking? When will the film start?” Lots of shushing from embarrassed parents. The film’s whizpopping fun, too!

The victim of The Boy's heckling at the BFG premiere

3. The Lego Movie: our first film together at the cinema. Hilarious and adventure-packed with some exceptional characters such as Lucy “no, I’m not a DJ” Wyldstyle, Will Ferrell’s President Business, a God-like Vitruvius (played by Morgan Freeman - who else?) and Batman, who got a fully-deserved Lego follow-up. The pick of the bunch is Emmett - the Every[plastic]man reluctant hero. 

2. Coco: An amusing and immensely moving film with phenomenal animation, covering some major subjects, like the importance of music, family and remembering the dead. I’ve no shame in admitting to a few tears at the end in the darkness of the cinema. 

1. Toy Story: Let no one attempt to counter the fact that this is the best kids’ movie of all time! An elegant tale of friendship with revolutionary mid-1990s animation and laugh-out-loud dialogue - the blueprint for the genre. Although it’s not been watched for some time now, The Boy and I must have seen it 30 times between his 3rd and 5th birthdays. Woody and Buzz still make the occasional cameo out of our toy cupboard, too. Roll on the fourth in the series, due for release in 2019!

Toy Story: The best kids' movie ever (no arguments)!

Were it not for my self-imposed rule that I had to have seen the film with my son, Back to the Future and Raiders of the Lost Ark would undoubtedly have made the list. And Cars III and Hop deserve a “worst films ever” mention. 

Tell me your top 3 (or 5 or 10) kids’ films below or via Twitter!

So there you have it, and, why not...*

*if born post 1985, ask your parents

Parenting tips from dyspraxic adults

Can we change the future?

[low pitch] da da dun da-dunga-da-dun, da-da da dun da-dunga-da-dun; [high pitch] booooooo-weeeeee! booooo-weeeee...

That was, of course, the unmistakable opening bars of the Doctor Who theme tune. While many were debating the implications of a female Doctor (answer: the bit you find unbelievable about someone travelling through time in a police phone box is that she’s a woman?) the dyspraxia community was understandably excited about her sidekick, Ryan. 

Ryan - dyspraxic time-travelling companion from Doctor Who, played by Tosin Cole ... not really that much to do with this blog! Perhaps I'm reading too much into it, but I really like the fact he's only using his fork in this photo - I hope that's deliberate attention to detail.

Yes! What a start to Dyspraxia Awareness Week.

I will shamelessly do anything to link this blog to popular culture, so I’m going to do some time travelling and try to improve The Boy’s future. A while back, some wonderful adults with dyspraxia responded to my request to share what their parents did well and what they wish they’d done more of during their childhood and youth. Some were public in their response, others sent private messages. I’ll keep all anonymous but I’m incredibly grateful to them.

Here are my parenting tips based on what they told me ... in no particular order:

Encourage independence as much as possible 

Allow the child to find their own way of doing the things that they find difficult and only intervene when they’re overwhelmed. Gradually, relinquish more control to them and don’t rush them. 

Fight their corner

Whether it’s school, CAMHS, whoever, get them all the support you can whilst not contravening the independence rule. 

Encourage what they’re good at...

If they show a natural flair for something and / or really enjoy it, find ways to get them to pursue it. A subject enjoyed at school could become a career, for example. Create the environment in which they can thrive. 

...but don’t force things on them

Ok, here I think some perspective is needed. Yes, don’t force (eg) football or skipping or A-level maths, but do ensure they remain active (swimming and Junior Park Run for The Boy) and do aim for at least decent numeracy. As adults they’d be far more annoyed with us if they were physically unfit or diddled out of money. 

Treat them the same as siblings 

This is a tough one for balance. The joy of teaching my 4yo to ride a bike was tempered by his 7yo big brother still with stabilisers (thank you, Ryan, for your getbackupability). The impact on both parties needs to be catered for. But the dyspraxic child shouldn’t be excluded. 

Be prepared on the mental health front

Judging by what people told me and the Dyspraxia Foundation’s survey results this week, bouts of mental health difficulties - especially anxiety - border on the inevitable. Here I have some work to do. It’s easy to say “do all you can to prevent” and “provide them with the resilience for when” and “early intervention” and “watch for the signs”, but what does that mean in practice? Perhaps some research and a future blog. 

Be open...

Don’t try to hide what they struggle with or get them to ignore their condition. But equally, don’t let them become ruled by their condition. This might sound like a paradox but their identity is theirs; dyspraxia is just part of it. It’s not the other way around. 

As parents we’ll never get it completely right, but hopefully we can get it less wrong and provide our children with their best future possible. 

This is just a summary of people’s sometimes extensive responses. I owe an enormous debt of gratitude to my future-travelling companions. I hope the fact that they’ve helped so much provides some recompense for their candour. 

Let’s play out with the theme tune:

[low pitch] da da dun da-dunga-da-dun, da-da da dun da-dunga-da-dun; [high pitch] booooooo-weeeeee! Booooo-weeneee...

Calling all inspirational people living with dyspraxia: your help wanted!

When I started this blog I was hoping I could reach other fathers who, like me, witnessed the birth of their sons with expectations of non-stop kickabouts down the park and bike rides around the block. But our reality turned out to be different. In many ways better and more rewarding, but undoubtedly different. 

I already knew of some of the influencers: There are some great parents: Gill Dixon immediately springs to mind (thanks for the timely seatbelt advice in particular!) with her unrivalled experience of supporting a dyspraxic family. Then there’s the Dyspraxic Copper with his experiences in what must sometimes be the most physical of vocations or MikeysWish, championing the cause for verbal dyspraxia. Plus, Professionals like Dr Sally Payne and the superb Dyspraxic Doctor. What’s more, phenomenal professional writers like Jenny Hollander and Maxine Frances Roper, using their skills to provide firsthand experience of living with dyspraxia as an adult. 

But what’s new is that a whole community has opened up. Everyday people facing many of the challenges we all face - like finding fulfilment in our family, personal and professional lives - but living it all with the added difficulties of dyspraxia. Those sharing experiences of growing up with the condition are particularly useful to me as a parent. Among many great examples is Alice Hewson’s recent blog on her school days. It was so enlightening for me as a parent who wants to do what’s best for his son and a reminder that there are always consequences, intended or otherwise. 

The other day, I witnessed these tweets from Alice and Maxine, discouraging use of the label “inspirational” when coupled with disability and encouraging a focus on acceptance that people find certain things difficult. This is undoubtedly important, but I’m not sorry to say that the entire dyspraxia community I’ve come across is an inspiration for me whether they like it or not! Inspiration to know that I’m human, I’m fallible and I have made many mistakes (and will make many more). Inspiration to know that - whilst dyspraxia challenges are constant - people adjust, adapt, gain Masters degrees, swing golf clubs, pass driving tests. Inspiration to do my best as a father. Inspiration to keep going and doing everything possible to support the development of another fine dyspraxic adult. 

So, I have two questions for all dyspraxic adults to answer:

1. Is there one thing your parent(s) / carer(s) did particularly well in supporting you growing up as a child with dyspraxia?
2. Is there one thing they didn’t do but you wish they had done (or did just a little/ occasionally but wish they’d done more of)?

Irrespective of whether you received a diagnosis in adulthood or childhood, please tell me your answers via this blog’s comments section, Twitter (@dyspraxiadad) or a personal message via Twitter (with anonymity assured). If I get enough, I’ll report back on my findings. I promise I’ll find your response insightful and, dare I say, inspirational!