The A Word and Shtum

Joy – yes, that’s my name, don’t wear it out! But have you noticed, that’s exactly what advertisers are doing at the moment. Joy appears to be the new buzz word. If I’d trademarked my name then by rights, I should be given free chocolate, pens, grocery shopping, sticky tape and a new car. So why am I telling you this? Well, at the moment, you’d be forgiven if you thought that Autism was the new ‘buzz’ condition. April was Autism Awareness Month and there was plenty on TV to remind you. Apart from Employable Me and Undercover, The A Word took centre stage.

For anyone who didn’t know anything about Autism, then The A Word gave some insight into one child’s life (and it’s important to remember that – just one child) and the impact on the family. As a mother with two high functioning sons on the spectrum, there were a few things that I could quibble with – the incredibly quick diagnosis for a five year old child (it can be that quick for an older, articulate, high functioning child), allowing Joe to wander off by himself every day (and if you saw the last episode then you’ll know how that one ended) and pulling Joe out of school without even discussing his issues with the teacher. But there were plenty of things that did ring true, not least the storyline of Rebecca, Joe’s sister, who is increasingly side lined by her parents in favour of Joe. It’s very difficult for siblings and it’s wrong to assume that they don’t need as much care and attention.

Trying to explain to other family members and friends is also hard. Alison and Paul were blessed with having Nicola, the GP sister-in-law, who not only could explain what was happening to everyone but could also find the right help for them. Not all families have this. It’s hard to explain what’s going on, especially as often the parents don’t really know themselves. Ultimately, this show was about how a family has to come to terms with the situation, the grief of knowing that their child is different but then allowing acceptance to move them forward.

It’s been left open for a possible second series. I’m hoping that there will be another and that the focus will be on the battles that have to be fought and won by parents to get the best for their children.

So, you’ve watched The A Word and you now know about Autism. Well, as I wrote earlier, you know about one child with Autism. Consider The A Word to be the beginner’s guide. Are you ready for the intermediate guide? Are you ready for the sharp end of Autism? The non-verbal, doubly incontinent child who will never function in ‘normal’ society? Sure? Then get a box of tissues ready. If The A Word brought tears to your eyes, then you’ll be an emotional wreck by the time you finish reading Shtum by Jem Lester.

Meet Jonah Jewell. He’s 11 years old and likes feathers to fidget with, being outside and eating apples. His parents, Ben and Emma Jewell, are trying to find the best secondary school for him but it’s not as easy as putting down six choices and hoping for the best, especially when the best is a residential school, out of borough and costing £200,000 per year. Jonah is autistic at the far end of the spectrum. Non-verbal, doubly incontinent, he will have to be looked after for the rest of his life. Ben and Emma have done their best but know that it’s not good enough – Jonah needs more than they can give. They are taking the Council to a tribunal to try and get the school that Jonah needs. They’re at breaking point themselves when Emma suggests that they temporarily ‘split’ for the sake of the tribunal. She’d heard somewhere that they were more likely to win if Jonah was living with a single parent. So Ben and Jonah are pushed out of the family home to live with Georg, Ben’s father. And therein lies another problem – Ben and Georg don’t really talk.

Jem Lester will have you laughing one minute and crying the next with Shtum. It’s both beautiful and harrowing. Each chapter starts with a letter and a PECS (Picture Exchange Communication System) sign that then set the tone for that chapter. I particularly liked the letter where Jonah’s name was wrong and I half expected Ben to be referred to as ‘Dad’ at some point during a meeting (a particular bugbear of mine). This novel highlights the battles faced by so many parents just trying to do the best for their children. Add to this the heartfelt story of Georg and Ben’s unacknowledged alcoholism and you will break. Although Shtum is fiction, this is also reality for Jem Lester and his son, Noah. Jem and his family know all too well the battles that have to be fought and won.

So you see, for all the buzz that was created around Autism in April, it’s now May and the Media will move on to something else. But for those of us with children with ASD (Autism Spectrum Disorder), or indeed any condition, it’s not about our moment in the spotlight or the buzz, it’s about everyday life with our children – the highs, the lows, the misunderstandings, the meltdowns. It is, simply, just life.

 

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