Andmybrotheriscalledtom2015isuu

For my sons Lukas Adomas and his friends, and Tomas who has been diagnosed as having regresive Autism, ADHD (hyperactivity) and LD (learning difficulties)

First published 2015 Text : Eglė Gelažiūtė-Petrauskienė © Illustrations: Eglė Gelažiūtė-Petrauskienė © egleg.carbonmade.com All rights reserved. No part of this publication may be reproduced in any material or digital form without written consent of the author.

Email egle.gelaziute@gmail.com for details. find it on AMAZON.CO.UK With special thanks to Kate Harding and Rachel Trigg In cooperation with UKBookPublishing.com Printed by BaltoPrint, Vilnius 2015

British Library Cataloguing in Publication data ISBN 978-1-910223-34-5

Eglė Gelažiūtė-Petrauskienė

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My name is Luke, I am nine. Yes, I have a brother.

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...and my brother is called Tomas.

He can’t say it for himself.

He can’t talk. He is autistic.

He looks like any other boy, but he is really different.

Very different from other kids...

He is seven years old, but he can’t talk. He can’t write. He can’t read. He can’t draw. He can’t even watch TV like other kids – he finds it too difficult to sit still.

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Tomas was a normal baby, but when he turned two he decided to focus on building very, very high towers only. He stopped learning, then stopped speaking, stopped being normal and slowly became an alien from a ‘three–legged’ planet*...

Dad says that the wires in Tom’s head are wired wrongly. Mum says the wires short-circuited when he was young somehow – Tomas has autism or regressive autism and it is a condition he will have for his whole life, which makes him so unusual.

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‘three-legged’ planet

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Story Lukas created, when he was about 5: Initially God’s plan was to send Tomas to ‘three-legged’ planet, where all people like Tomas live, not to Earth.

However his hand slipped, maybe the devil interrupted him, and Tom happened to land on Earth. Tomas cries because he is longing for his true planet, he walks so funnily because he is using his third leg, though it is invisible to us, he can’t learn to speak human because he was supposed to speak ‘three-legged’ and he feels bad in his human body..

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For example my brother just loves ripping paper more than anything else. He will shred old magazines until his room is full, and he is happy while doing that. Somethimes he will eat paper too. He’s not interested in toys. Tom runs like mad all over screaming, jumping on sofas and shouting. He pours mum’s coffee down the toilet and her mobile phone too. And it is not because he is naughty – that’s because he is autistic. It is a

doctors do not know why Autism happens or how to treat it. strange illness –

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So we live a little differently to other people. We have to lock all rooms including my bedroom, because I have to keep my books and notebooks safe, or Tomas would rip them. It is especially annoying if it is a library book or homework! My brother can’t see the difference between good books and old newspapers.

He loves looking at the supermarket catalogues, smelling them and trying to blow out the candles on the pictures of cakes.

We have to lock windows too... and doors... and the kitchen cupboards! In the street we have to watch Tom constantly to keep him safe – he can run into the street, jump into a hole, or climb up fire escape ladders – Tom can’t understand the danger.

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He is really odd, my brother.

He has to eat standing on the chair sometimes. Mum lets him, otherwise he won’t eat at all. He is very sensitive to textures and odours and tastes and finds it too hard to sit. And he will only eat what he likes. That is fish fingers, apples, sausages, plain pasta and ice cream. With no sprinkles and no syrup and no sauce. Tomas will sniff the dinner on his plate, push it aside, and then get his apple! And we all have to eat dinner and finish everything that is on the plate including vegetables. I don’t think that’s fair at all. It is only fair when we both get ice cream for pudding!

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All my friends know Tom well already.

And they do not laugh at him any more.

Mum explained to them that Tomas is different, Autistic, and we do not know why, and that it is not nice to laugh when he is doing something strange or unusual. We have to care for him, be friendly, and try to explain things to him. Or leave him alone if he is not interested. That’s how we can communicate with Tomas.

Tom loves to watch when my friends and I play races on games consoles. He will cover his ears if we shout too loud, but will sit and watch with an apple in his hand. He likes the sound of racing cars, he loves to watch them. The only shame is he can’t play himself.

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He can’t play, because he does not understand how to.

He can’t understand the rules of the game or take turns like we do. Even if I explained the rules to him, he wouldn’t understand.

Tomas would rather shred all the tokens from the board game or money from ‘Monopoly’. Instead of throwing tennis balls, he would throw a rocket. He can’t understand the rules!

I’m better off playing chess with my toy monkey – at least she won’t throw things all around the room! And what happens when one does not know how to play?... they can’t make friends!

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I am his best friend.

My brother is good at playing games where you do not need to think. He can jump on our trampoline all day, and he is very happy when we jump together. He laughs loudly and gets very excited. He wants me to tickle him. He loves it!

Tomas laughs and jumps and can’t stop – that’s how excited he gets, but sometimes he kicks me or pushes me too hard. He still laughs even when it hurts. And he wants to do the same thing again and again and again. And again. There is no point getting cross with him because it is not his fault that he can’t understand. It is autism, that makes Tom behave like that.

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My brother loves water, he can play in the bathroom for hours, and it is very difficult to get him out! He also listens to music.

We listen to music and dance together. We all go for long walks in the park. Tom is an excellent walker, he doesn’t get tired easily. He can ride a scooter, only he finds it tricky to stop. We both swish through the park on scooters, and I watch Tomas with one eye to make sure he doesn’t bump into people!

It is quite fun with him at times...

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My brother hates busy places.

Those kind of places make him nervous. It is too much for him, and he almost gets dizzy. He may shout loud and act strange.

He can’t see what is his and what is other people’s property, so he can try to take somebody’s fizzy drink without asking.

Snatch! Then people get cross and tell him off. That’s because Tomas looks like any other naughty boy. Autism is an ‘invisible’ disability. And then we have to say ‘sorry’ and keep explaining.

So we avoid visiting busy parks, fairs, concerts, theatres, cinemas, cafes and other busy places together...

And that is sad, because I like to go to cafes and concerts and cinema! Grandma takes me there when she can, or Mum does, and Dad has to stay at home with Tomas.

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And sometimes Tomas will throw a tantrum. Mum calls them ‘meltdowns’. Perhaps he does that because he can’t explain what is wrong. Then he will shout very very loudly and stomp around and be upset. It may be that he wants to go home, or it hurts somewhere... Maybe things are going a different way than he is used to. He shouts so terribly loud, and it is almost impossible to calm him down then. People are looking at us. I feel sorry for him and get cross with him at the same time. I want to close my ears and run.

Tomas can shout for an hour sometimes, or even all night...

And what if we are travelling and spending a night in a hotel..oh, so embarrassing...

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Tom has ‘learning difficulties’. He can only understand very simple things. Simple instructions.

He can’t understand words like ‘tomorrow’, ‘universe’, ‘holiday’, ‘Christmas’... I try to teach him what I have learned in school, but he would rather go and shred his magazines.

This is why I have to go to school alone, and Tomas goes to school by taxi. It is a special school for children like Tomas. They are learning to sit still. Dress. Eat nicely. Play with each other.

Take turns. Wait. Listen to the teacher and to use signs and symbols if they can’t talk.

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It is difficult for autistic children to learn, because they are very ‘busy’ already – Tom’s class mate Max will flip his hands and jump all day, Tony will be rocking and rocking and Harry will laugh non stop. Tom can happily jump all day, but it is so hard for him to sit. He can even forget what’s rude and does a wee on the playground floor!

The teachers are trying hard to teach Tom and his classmates to behave nicely. They also try to teach him to talk, only they can’t tell if he will ever learn...

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Will he be able to speak to me? ...

Nobody can tell – not teachers or doctors or Mum or Dad. It is ‘dificult to know’ they say. Does he have anything to say?

I believe so, as he tries to speak and gets upset because he can’t make normal words, just weird sounds.

But on good days he will come to me for a cuddle and squeeze me so hard, that I can feel how much Tomas loves me, even if he can’t tell me! And then I am so proud to be his brother!

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On bad days my brother will be too upset or too excited and will laugh loudly for no reason or suddenly burst into tears. He might try to get his eyes out or bang his head on the wall. He will get quite crazy and he does not want to listen to anyone then. It is frustrating for everyone around him, school would send him home, Mum would try to comfort him but he keeps shouting, shouting, shouting loud! He goes to his room to shout there. On such days it seems like no-one can help him at all. Mum and Dad even...

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It is sad sometimes to have a very different brother... It feels lonely sometimes and unfair. But this is how Tomas is and how life is...

But when I grow up I will invent medicine to treat autism and it will make my brother talk... And then he will tell you his story himself. Or at least he will be able to tell you his name and then ask you out to play!

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You might have heard the word AUTISM. We had only very briefly, before we had Tomas. But we know a lot about it now. And I made this picture book to give a little insight into what it is like to live with an autistic child, and maybe some ideas of how to react and be helpful.

In short: Autism is a life changing developmental disability and lifelong diagnosis not only for the child but for his parents and siblings.

Autism is called an ‘invisible disability’ as it is not physical but social and mental. Life from outside looks about normal, though it is isolating. For people around – neighbours, class mates, other parents, even relatives and friends – it is difficult to understand how different life is as it is not clear what’s wrong, and it is not easy to explain. ‘He cannot speak’, ‘He can’t answer you’, ‘he does not understand this’, ‘he is not doing that on purpose’, ‘he will not grow out of it’, ‘he is autistic’ – we keep explaining... but we live with hope that a cure will be found one day!

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