Tuesday, 19 May 2015

A story about Autism by Luke ....and my brother is called Tomas

Author and illustrator Egle Gelaziute-Petrauskiene has written a lovely book about her son Tomas who has ASD. I thought you'd like to hear the story behind the book............

It was October 2006 when we moved to the Midlands  - Tomas and Lukas were two and four – Lukas started at nursery – me and Tomas started visiting play groups, started making friends. Tomas learned some English words, few names and also to sing happy birthday‘

We visited places, and then winter came with viruses and ears infections, temperatures and medicines ... lots of crying and sleepless nights.  – In  spring we noticed that Tomas made no progress in any areas. It was June we were asking him repeatedly ,what colour are your socks?‘- which was red‘and it took twenty repetitions to get any answer from him. He did not want to answer. Just ignored . He did not wanted to look at what we showed. To say his name – he wanted to play with sharp knifes and empty bottles. Kept walking around repeating same phrases 'tom tom put bottle' . And then all the questions we asked ourselves – why he is so cry baby in public places, why he does not ask questions, why he is happy just be left alone, why he is so clingy, why he does not want to play on slides and climbing frames any more, why he is scared to death of shower and bath and stairs, why he does not like listening to story books, why he does not play with toys just building towers from everything? 

It takes time to realise that you need to look for help, especially when you think you have an ordinary child – that disorder is so difficult to spot, to believe to and understand – your autistic child looks quite normal one day, then tomorrow you think, no, something is not right‘ – and next day he does something bright again, it is not visible, it is not even clear at the start – it took us till Christmas to phone the health visitor to share concerns... Tomas lost most of his previously-had speech when he was three and half. And got the diagnosis 'working diagnosis of autistic spectrum disorders‘ next spring. He was most severe one from that small group of kids who went for assessment together – he could not even put any simple puzzle together nor sit still for a minute. Constantly on the move with no purpose. Autism  is a vast spectrum and Tomas is somewhat near the bad end, but it takes years to accept it. It takes lots of energy to swallow it and try to  find ways to help, as no proper help is readily available. We new only very little about autism at all, almost nothing, so had to read and find out what to do.  We had to rule out all treatments advertised on line – dolphin therapies and food therapies, food supplements made from see weeds and so on. And it is everyday life to cope with tantrums and eating nothing, door banging, no sleep, poor sleep. It took few years to accept that most likely he will be like that. That's how he is. And we love him even more.

This book I wrote when Tomas was about seven, Lukas friends used to come round or play in garden and stay for tea, we had to meet other kids in school summer fairs, outings, parks – I realised it is not  clear for kids, not even for adults, as if it would have been to me before Tomas why is that – why he is screaming and shouting, why he is eating so strangely and why he is allowed to do that, why we cant accept invite to party in swimming pool, why mum looks too tired – all that.  Autism  is invisible disability.  You have to explain a lot. Why why  why? When he will talk ? Will he grow up and will be normal? In the book i tried to explain things through Lukas point of view – using simple words and lots of illustrations.  About everyday life. That's it- we live with Tomas and life is a bit different because of that. We do not know what future holds for him and us, but no one knows. So I just hope that this book will be helpful and will give more understanding about families affected by autism.
 We also rise money from this book  for NAS Stafford branch and, as this playgroup was the place were we could turn for advice- they try to find whats around and having opportunity to meet other families in same situation is priceless. No judging looks at your child there too.

And yes, if you see a child in the park running quickly to you to fetch your bottle of drink paying no attention to any protests (and mum running after him) that might be someone just  like Tomas. Be patient, be aware that autistic kids and they families exist, and they go to parks too..and they try their best to behave! Do not tell them off.

Tomas mum,  Egle Gelaziute-Petrauskiene

This book will be available from our new website when it launches next week www.speechtherapyactivties.co.uk

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