Oeufers, I’ve got a confession. Hartley’s not going to like it one bit.
I can be a rather emotional guy, with a tendency to blubber at moments of extreme joy.
This has proved quite embarrassing over the years, it’s something I struggle to control even in public (my kids school plays are impossible to get through), and it isn’t even limited to my own joy. Movies, music, books or articles, bloody TV adverts, sometimes I cannot physically hold it back.
Why the hell am I telling you this? A football blog, frequented exclusively by blokes (+ Spursy), with a tendency towards blokish humour and medium/medium rare banter?
It’s because I’m having one of those moments right now, a moment of pure pride, knowing that I’m just about to tell you chaps about my son, Jay.
The first 18 months of Jay’s life passed as any parent would expect. Milestones such as playing with toys, crawling, walking, all passed in what would be considered “normal” timescales. We then gradually developed areas of concern, no direct eye contact, no inclination to play with other children or socialise, and no speech development. In fact, many of the sounds that he would make in his first year or so were disappearing, and he became virtually mute.
It took over two years of tests, hospital and specialists visits, and a hell of a lot of chasing and pushing before it was finally confirmed what we already knew, Jay was on the range of neurodevelopmental disorders known as the autistic spectrum, and was at that time considered to be towards the upper end of that range in terms of complexity. There were no answers to our questions on development from that point, it really was unknown as to whether Jay would ever speak or even interact in anything other than a very basic way.
At that time there was a big push towards inclusion across the public sector for those in minorities, including the mentally and physically disabled. It was suggested to us that the best education for Jay would be a mainstream primary school, and it seemed the right thing to do. We felt like maybe being in a setting where other children communicate, it would encourage Jay to do the same.
Over the next five years, there were modest but precious improvements in his communication and social awareness. He slowly started to speak, mostly because of the TV. It worked for him, he was captivated and attentive, especially cartoons, and he started to repeat words, even developing a slight American twang which he still has to this day.
But school wasn’t easy for him. He had a one-on-one helper in the classroom at all times, and the school made great efforts to include and integrate him, but he showed little inclination to engage the curriculum, or the attention of other children. He also developed issues such as instances of hitting or biting, sensory overloads, and physical habits such as high pitched noises and flapping arms.
When it came to secondary school we had serious concerns about him continuing in mainstream schooling, and after a battle, managed to get him a place at a highly rated specialist school called Thriftwood.
We knew immediately that it was the right place for Jay. There were children with a wide variety of disorders, some much more complex than Jay’s, but it was evident that every child and every member of staff were engaging.
He became engaged in subject matter in the classroom, realised the need to learn to read and write, and very quickly used his voice to question and express to such an extent that he’d get in trouble for talking too much. By the time he left, he had a GSCE in both English and Maths, had developed a keen interest in computers, and even sung a solo for his school choir at Chelmsford Cathedral in front of two hundred people, passionately, at the top of his voice (uncontrollable blubbering, obvs).
Jay is now nineteen, a man. He is just about to start his BTEC Level 3 in creative digital media production, having passed level 2 with a distinction. He gets himself up and ready in the morning, walks 20 minutes to the train station, gets a 45 minute train to Liverpool Street, then has a 10 minute bus journey to his college. At one point, I never imagined he’d be able to cross the road without a responsible adult.
He works hard at everything he does, whether that is college work, the videos he makes for YouTube, or especially in the last two years, a passion for writing stories.
Around eighteen months ago, Jay wanted me to read a story he had written. He was quite certain that at 98 pages it wasn’t a novel, more a novella. Quite quickly, I couldn’t believe what I was reading.
It wasn’t so much the quality of grammar, Jay writes as he talks, in sometimes broken English that struggles with tense and participle, it was the detail and the descriptive manner in which he wrote that was so unrecognisable.
Jay’s disorder means that his brain works quite differently to ours. He has learnt ways to communicate, but in all honesty, it is in most cases to discuss only subject matters that are of interest to him. We generally talk about movies, tv shows, his college work, but he would never engage in a meaningful conversation about, say, how my day was at work, or what I did on holiday. A relationship with Jay, although no less fulfilling than any other, can be mostly a one way thing in terms of content choice! Most of the empathy he has is learned behaviour rather than natural. In some ways I consider him very lucky, he suffers far less emotionally than any of us. He knows jubilation, happiness, sadness, and sometimes anger, but he doesn’t share our ability to feel guilt, to be deeply hurt by words or actions of others, or any notion of inadequacy or pressure to conform. He will most likely never have a wife or children, or what we would consider to be close friends, but will also never understand our need to have a partner, or children, or close friends, to have the affection of others, so it is no loss to him.
But I was reading a book that described the feelings and emotions of it’s characters in quite poetic detail, that developed relationships between those characters, that asked questions of morality and values, and contained writing that in some instances tackled theoretical scientific subjects.
It was hard work editing it to a point that is was easily readable, we took great care in trying not to change much of the content so it was still Jay’s words, but as grammatically correct as my capabilities allowed. Six months of long, tough sessions later, it was done.
I didn’t do much else after that, I didn’t get a chance. Jay sent copies of his manuscript to several publishers, and started writing both a sequel and a spin-off (Star Wars inspired).
Around three months later, he calls and says he has received a contract offer from a publisher. Crikey.
Jay came to mine the following day and eagerly watched me as I read the contract. I was immediately sceptical. It was a hybrid publishing contract, meaning it required a contribution from the author towards the cost of publishing. On further reading there were areas I was uncomfortable with. Although it committed to a programme from editing to marketing to publication, it gave little in the way of actual financial commitment in those stages. The royalties seemed unfairly weighed in the publishers favour to my untrained eye, and the ability for the author to block editorial or content changes once the contract was signed wasn’t entirely clear. Further due diligence of both the publisher and the contract type threw up mixed results, with some bad news stories and some good.
I explained my concerns to Jay and he understood, but was unperturbed. He wrote the publishers an email detailing all areas that he/I was unhappy with in the contract, asking them to clarify. A series of emails between them then ensued, and reassurances were verbally given, but I didn’t expect it to go anywhere. Then a revised contract arrived, and it was much more promising. The author contribution to costs was reduced, royalties changed favourably for Jay, and most importantly for me, a commitment in terms of minimal number of copies printed and advertising/marketing investment within the contract from the publishers which proved that it was very much a joint financial commitment.
I discussed this in detail with Jay, as you can imagine he was excited, but we decided at that point to bide our time, send the manuscript to more traditional publishers and literary agents, and see what happens.
Just a few weeks ago, the publishers called Jay and I spoke to them too. I was very impressed with what they had to say, their views on the content of the book, and their plans to take it forward if Jay were to come on board. We did, however, make it clear that Jay was considering his options at that point, and had sent the manuscript to other publishers. Within 2 days, Jay received another revised contract, this time with a further reduced author contribution, higher royalties, and a commitment to investment by the publishers that dwarfed the requested author contribution.
And now Jay has decided that he would like to take up their offer, and I fully support him.
And that’s the reason why I’ve opened up to you all, poured my girly heart out and shared my story.
Yesterday, my other son created a “gofundme” page for Jay, to help raise the £1,600.00 contribution to publishing required, as per below link:
Please know that there is no expectation from me for you guys to help. This isn’t going to a charity, and if you don’t feel comfortable or are unable to spare anything I completely understand. There is no obligation based purely on your friendship with me.
But if you want to, and can help, even with a small amount, both myself and Jay would be eternally grateful.
Crikey, that’s a long read. Thanks for your time. Have a bloody lovely day.