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Parent Carer, Author, Music and Football

jonblakejonblake Member Posts: 42 Courageous
edited May 2019 in Guest blogs

Jon shares his experiences as a parent carer, to his son Jordi who has Cerebral Palsy; their love for storytelling, music and football.

Jordi smiling and his fist in front of him

Last Friday Cardiff City Foundation, which organises activities in the community, including football sessions for disabled children, held a 10 year anniversary event.  The compere was a twelve year old boy with cerebral palsy. His performance brought the house down: next day he was in the directors’ box at the City Stadium.  I wasn’t in the least surprised: the boy in question was my son, Jordi.

I was 52 years old and a well-established children’s author when my partner and I had our first child. It soon became evident that he couldn’t sit up like the other kids, but it wasn’t till he was nearly two that he was diagnosed with cerebral palsy. At first it was a terrible blow to us, but eventually Jordi did crawl, then walk (albeit awkwardly). His movement problems did not make him any less open, enthusiastic or affectionate, and the warmth of his personality melted hearts everywhere.

I really do believe that those movement problems had a positive effect on Jordi. Unable to run around with the other kids, he read avidly, and it soon became apparent that his literary abilities were exceptional. At the age of six he won a national poetry competition and began dictating stories which showed not only great originality but also a highly developed sense of how to tell a tale. We put these stories on his website. www.jordiblake.co.uk, which now features extracts from his latest work in progress, a novel of over twenty thousand words.

These days Jordi usually has three or four books on the go at any one time. He first came to understand his condition through my story collection “Oshie”, about a boy with cerebral palsy who has an encyclopaedic knowledge of football.

In 2017 I was shortlisted for the Laugh Out Loud awards for Thimble Monkey Superstar, about Jams Cogan, another boy with CP, and the lovable anarchic monkey who comes to live with him. I tried hard to write a chapter of Thimble a day, knowing that Jordi would be rushing home from school eager to read it. He is the best possible audience, not only because he laughs so much, but also because he gets so involved in the story and comes up with dozens of ideas. He even sang the theme tune which we put up on his YouTube channel.

Thimble Monkey Superstar aims to entertain, and Jams’s disability is just a fact of life rather than the subject of the book; he uses a walker but is not defined by it. The response to the book has been fantastic, but then most people tend to respond to Jordi in a very positive way.

Last summer Jordi had a major operation to severe and reset both femurs.  It was his hardest test yet but he came through it with flying colours.  I’ve always encouraged him to turn his disadvantage into an advantage, and it is absolutely his aim to become a tribune for disabled people through his extraordinary eloquence.  He will undoubtedly succeed.

To read Jordi’s extracts from his latest work in progress and a novel of over twenty thousand words, please visit his website. Also visit Jon’s website where you can find out more about his work.

Can you relate to Jon’s story? Please share your experiences with us.


Replies

  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Thank you for sharing this with us @jonblake , I am trying to incorporate more reading in my spare time, I am not sure if I can get up to Jordi's numbers. :) 
  • jonblakejonblake Member Posts: 42 Courageous
  • Richard_ScopeRichard_Scope Posts: 2,725

    Scope community team

    @jonblake and Jordi, it's fantastic to read this!

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Deb_AlumniDeb_Alumni Scope alumni Posts: 191 Pioneering
    @jonblake I have just read some of the reviews Jordi has written, they are fabulous... if anyone wants to encourage their child to read they really need to signpost them to his website.  Thank you for sharing your story with us.

    Debbie
    Online Community Manager
  • jonblakejonblake Member Posts: 42 Courageous
    Thanks Deb - he's rather neglected his site since his big op but he'll be delighted you've said this and hopefully will post more reviews soon!
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    edited May 2019
    A great post, thank you @jonblake and Jordi! I'll definitely be reading some of the reviews and look forward to his new posts :)
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  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Brilliant post. My girls are much the same when it comes to having multiple books on the go at once, but it’s really great to hear about a boy who has an interest in reading and writing!
    Definitely going to point out Jordi’s book reviews to my kids as they’re always on the lookout for anything new to read.
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  • StayceStayce Member Posts: 396 Pioneering
    edited May 2019
    Hi @jonblake

    Note for Jordi - Just wanted to say, I’ve just read your reviews and poems - These are amazing, you have a lovely way with words. I hope you are very proud of your achievements so far (because you should be)

    I share your love of books, often have 3 or 4 on the go at once too - fiction, nonfiction and a graphic novel (fancy word for comics really - makes us sound more grown up 😀)

    I think books can give you so much pleasure, take you to new places and characters you loathe or would like to meet. I have recently been undergoing rehabilitation myself after injury (I have Hemi CP) and my books have been a great escape when my mobility has been restricted and these books have accompanied me to many a hospital physio waiting room (I am sure you know where I am coming from😀)

    keep up the good work


    All the best
    Stayce


     

  • jonblakejonblake Member Posts: 42 Courageous
    Thanks Stayce. Jordi was so overwhelmed by your comments he was temporarily unable to speak for once!  But he thanks you very much and does indeed know where you're coming from.  Great you get so much out of your reading: if you should want a signed copy of one of my books just let me know.  Best, Jon.  
  • StayceStayce Member Posts: 396 Pioneering
    Thanks @jonblake and Jordi 😀 - I’d love to read Timble Monkey Superstar that’s mentioned in the piece- That would be awesome 😀

    If I can help you or Jordi with any advice on CP related things or just want to chat to someone who understands all this stuff  just ask @Sam_Scope or @Richard_Scope to pass on my e-mail address on to you. Be lovely to keep in touch

     Has Jordi ever tried using Dragon Naturally Speaking? I have been using it to type for work for about 6 years now (got tiring using one hand to type) - it’s been a game changer for me. Just thought for all Jordi’s writing in the future 

    Best wishes

    Stayce


  • jonblakejonblake Member Posts: 42 Courageous
    Thanks again Stayce, I'll sort sending the book and I'm sure Jordi will be happy to chat some time.  When he was younger he did try Dragon but it couldn't understand him!  Fortunately however typing is no problem for him.
  • Richard_ScopeRichard_Scope Posts: 2,725

    Scope community team

    Hi @jonblake and @Stayce
    We are not permitted to pass on email addresses. I hope this will help? JonBlake blog

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • StayceStayce Member Posts: 396 Pioneering
    No problem - Thanks @Richard_Scope - That’s super 

    Best

    Stayce
  • jonblakejonblake Member Posts: 42 Courageous
    Just want to flag up the fact that a third Thimble book has just come out, Thimble Wonga Bonkers. In the first two books the disability (CP) of narrator Jams is incidental, not the focus of the story, but in this one negative attitudes toward his disability, and his triumph over these, are central to the book's conclusion.  The publishers and I thought this was a bit of a risk but the response has been phenomenal. I've been made author of the month by Welsh Libraries, there have been major articles on the book in the Western Mail and (soon) the South Wales Evening Post, and the book has gone straight to number one in the influential Family Bookworms chart. I just hope as many schools as possible will use it as a means of getting disability discussed and negative attitudes rooted out. @Richard_Scope

  • Richard_ScopeRichard_Scope Posts: 2,725

    Scope community team

    That's amazing to read @jonblake. How are you all?

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • jonblakejonblake Member Posts: 42 Courageous
    We're ok thanks @Richard_Scope, hope you're well yourself. Jordi is going really well at high school, where he's well established as an actor and singer besides the usual school things. He did have a period of depression but got onto some good drugs for his ADHD and that's behind him now. Walks with crutches, can do a few hundred yards.  Still hasn't completely recovered from his femur op (not getting sufficient NHS physio hasn't helped) but now has a new bit of kit, a JAS GL stretcher thing for his leg which is a kind of robot physio crossed with a medieval torture rack, but only if you set it too high!  He's always happy to hear from people on Twitter at @reviewsbyjordi                                                    
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