Away

Mummy and Daddy said “Zac, you are going to Aut Even for two sleeps, and then Mummy and Daddy will bring you HOME”.

I go to Aut Even sometimes and sleep in my special Aut Even bedroom and watch my Maisy DVD in bed.

I play in the sensory room, and run in the big garden and eat chicken nuggets and baked beans and chocolate spread on toast.

I go in the minibus to the swimming pool or to the park or beach.

I have a bath and Pam reads me my Some Dogs Do book.

Geoff and Ian and Sue look after me.

Then Mummy and Daddy bring me HOME, which is what I like best.


Aut Even is a respite centre for disabled children, which Zac has been going to for 2 or 3 night stays, every 5 weeks, since he was 6 years old. The idea is that the children have a fantastic time, and the parents get a break, and some sleep! (Zac, like most autistic children, is not a good sleeper, despite his sleep medication.)

We miss him when he is at Aut Even, but we never fail to be amazed at how simple, carefree and relaxed “normal” life is when Zac is not around! We can do the things that most people take for granted… feed the ducks in the park, watch a movie together, take a stroll in the sunshine!

We are really grateful to all the wonderful respite carers at the centre and we hope that Zac looks forward to his visits as much as we do.

Key:
WHITE text is me, "speaking" as Zac
GREEN text is direct quotes from Zac
GREY text is background commentary or explanation

Bank Holiday

I let myself sink down, down... water above and all around me. Then up I shoot, kick, splash and dance - the light and sound and sparkling water whirling. Down the flume on Daddy's lap, faster, faster, my face a smile shape. I love swimming!

Later Mummy took me and Luca to the Priory and the Stone Park. I wanted to kick the geese to make them honk and flap, but Mummy and Luca pulled me away. I found lots of lamp-posts to lick - I like to taste the metal and look up at the bulb. I was happy they were all OFF. Lamp-posts go ON when the sky is dark and OFF when the sky is light.

My nappy was so heavy when I did a poo and Mummy took me to the toilet. I wanted to grab that poo and squish it, warm and sticky, but Mummy made Luca hold my hands.

At the Stone Park I ran up and down by the green railings banging my pig book. But when Mummy lifted me into the swing, my legs dragged on the ground and Mummy said "Zac, you really are too big for the baby swing now" (and I said Zac, you really are too big for the baby swing now). So there was no swinging and I was sad.

But then the rain came and I laughed and flapped and ran and banged my pig book, looking at the sky. And Mummy and Luca said it was time to go home.


Swimming is Zac's all-time favourite activity. He is a natural self-taught swimmer (albeit "doggy paddle"!) and has absolutely no fear of water. We have to be so careful around rivers, ponds, etc, as Zac will just try to throw himself in.

Zac has always had a fascination for lamp-posts and will stop to hug and lick them whenever possible! He can get very distressed when a lamp-post is on when it should be off, and vice versa!

We are hoping that one day Zac will be toilet-trained. Luca is a great help with Zac, and at 5 years old has a mature head on his small shoulders. He can tell you all about Autism and wants to find a "cure" one day, as well as be an astronaut, an inventor and a vegetarian chef! We try to make sure he has lots of fun and one-to-one time, to make up for his caring role in Zac's life.

The "Stone Park" is actually Wouldham Park - Zac gave it its nick-name, but we're not sure why he chose to call it that! Zac loves swings and really enjoys being pushed as high as possible. Unfortunately he is now so big that most "baby" swings are no good for him, and he is unable to use a normal swing as he cannot hold on to the ropes or chains.

Key:
WHITE text is me, "speaking" as Zac
GREEN text is direct quotes from Zac
GREY text is background commentary or explanation

Feet

Mummy did the VERY cross voice when I kicked Lily-Rose's face. There she was, all pink, lying on her mat bashing her toys, and quick as a flash before anyone could stop me I ran and kicked!

Lily-Rose cried and Mummy shouted and her face made cross shapes, and the noises and colours in my head made fireworks and I jumped and flapped and laughed! I love fireworks.

Mummy put me in my room and said "You will not listen to Lily-Rose crying!" I like my room, with the swing seat and the big blue ball and my green animal quilt.

After lunch Mummy and me went for a walk by the river, but I wanted to stay in my purple chair. The sun sparkled on the water and the path and in the trees, and if I just opened my eyes a tiny tiny bit, the shapes and colours went all fuzzy.

With my toes I wiggled my shoes off and let them fall on the path. I do not like shoes... they make my feet all heavy and stiff.

Later Mummy said, "Zac! Where are your shoes?" and we had to go back and find them.

No, I do NOT like shoes, or sandals, or slippers, or trainers, or wellies. At home I wear my socks, even in the garden, even if it's raining or cold. I like to feel what is beneath my feet... grass, pebbles, carpet, a baby's face.


We have lost count of the number of pairs of shoes we have bought for Zac over the years. He cannot bear having them on and will always find a way to get them off and "lose" them.

The violence towards his sister is obviously a much more serious concern. One aspect of Autism is a lack of empathy towards others, and Zac really doesn't appreciate or care that his actions cause his sister pain. To him, the "reward" for hurting her is her crying - it gives him a huge sensory stimulus, in just the same way as he enjoys switching a light switch on and off, on and off.

Our current approach is to remove him from the situation as fast as possible, so he doesn't get the reward of hearing her cry. We are obviously trying to prevent these "attacks" from happening in the first place, by giving Zac one-to-one attention as much as possible - but occasionally (as happened today) we are just not quick enough.

Key:
WHITE text is me, "speaking" as Zac
GREEN text is direct quotes from Zac
GREY text is background commentary or explanation

Castle

I like sitting in the front seat of the car, watching the lamp-posts whooshing past, banging my book in time to the music. But when we got to Leeds Castle, the sky was so big and high above my head, and the noises and colours so bright that I wanted to stay in my purple chair.

I put my fingers in my ears and leaned right over so that I could see the tiny pebbles in the path moving between my feet as Daddy pushed me along.

When we had our picnic the shiny silver tables were all gone, and there were wooden ones instead. I didn't like that at all and did my sad singing and couldn't eat my sandwich.

At the play area I felt safe so I got out of my purple chair. Mummy made me put my shoes and yellow vest on. There were so many children screaming, laughing, climbing, swinging, smiling. I ran up and down by the wooden fence, up and down, banging my pig book. The ground was crunchy beneath my feet and I did happy singing.

When we got back to the car Daddy said "Zac, did you like Leeds Castle?", and I said I did not like Leeds Castle, and Daddy said "Good talking, Zac!". I watched the lamp-posts whooshing by and banged my book in time to the music, happy to go home.


Zac suffers from Sensory Processing Disorder, a common feature of Autism, which affects the way he interacts with and responds to the environment around him. Certain sights, sounds, tastes and textures can be a real challenge for Zac and seem to cause him pain, often to the point where he will drop to the ground and refuse to walk. He feels safe in his "purple chair".

Zac puts his fingers in his ears to block out unwelcome sounds, and often expresses how he is feeling by singing in a major key when he is happy and a minor key when he is sad. Another example of his amazing brain!

Key:
WHITE text is me, "speaking" as Zac
GREEN text is direct quotes from Zac
GREY text is background commentary or explanation

Smash

We had tea at Grandma's house today, in the garden. I like to run up and down the garden, up and down, banging my Maisy book.

Mummy and Grandma both did the cross voice when I threw my tea on the floor. It was a yummy tea... bread and hummus, cucumber, tomatoes, strawberries and crisps. But I had the feeling in my tummy - the bubble that just got bigger and bigger until I knew I would burst if I didn't fling my plate as hard as I could onto the ground - CRASH!!!

The sound hurt my ears and I had to put my fingers in, but it was such a good smash on the bricks and I laughed and laughed!

Mummy swept it all up and made me some Marmite on toast, and there was no more cucumber and strawberries after that.

Bubbles

Today I am listening carefully to all the words around me. So many words... from Mummy and Luca and Grandma and the television and my teachers. Some of the words hurt my ears and some of them make me smile.

When I move my lips and tongue and throat the right way, I can make those same words come out of my mouth. I can copy all the words that I hear. Mummy says "Luca, time to do your school reading" and I say Luca, time to do your school reading - straight away, just like that!

I don't know what the words mean, but I like the way they feel in my mouth.

When I do Daddy's words I close my throat and tip my chin down to make the words deep and boomy. When I do Luca's words I let them fly loud and squeaky right out of the top of my head!

Sometimes when I copy words Mummy says "Zac, you are being echolalic today" (and I say Zac, you are being echolalic today) and that word makes me smile.
E-ko-LAY-lick... I like using the tip of my tongue to make the "L".


In the bath today Luca and Mummy made lots of words and I copied them. Then Luca copied too and we all copied each other till the whole bath was full of words and bubbles and smiles.


One of Zac's recent reports described him as having "significant echolalia" - a common feature of autism where the child repeats the sounds and words that they hear around them, without necessarily understanding them. At the moment Zac is enjoying his echolalia and sometimes copies everything that he hears throughout the day. We are hoping that this will eventually lead to some meaningful speech.

Key:
WHITE text is me, "speaking" as Zac
GREEN text is direct quotes from Zac
GREY text is background commentary or explanation

Baby Sister

There's Lily-Rose again, in Mummy and Daddy's bed. That thing in her mouth, that dummy, is going up and down, up and down. I want to grab it and pull it out of her mouth! I want to grab her face and squish hard. I want to throw my book at her.

Then she will cry, and Mummy will do her cross voice.

When Lily-Rose cries the sound hurts my ears so much that I have to put my fingers in them. But the sound is also funny and makes me laugh. And I will laugh and laugh.

Zac's baby sister Lily-Rose is 4 months old. Unfortunately Zac has "attacked" her on many occasions to try and make her cry... a sound which clearly causes him both pain and pleasure. We now have to make sure that Zac has a one-2-one carer with him at all times when he is at home in order to help protect Lily-Rose (Social Services have been fantastic in funding extra care at certain times of the day).

The "book" Zac is referring to is a plastic squashy bath-book, one of many that Zac carries with him at all times. He holds the book in his right hand and bangs it with his left, over and over thoughout the day. This is one of Zac's coping mechanisms and helps him to feel safe and calm in a frightening world.

Key:
WHITE text is me, "speaking" as Zac
GREEN text is direct quotes from Zac
GREY text is background commentary or explanation

Silence

Today I am silent. I do not want to speak, but everyone keeps asking me questions all the time. "Zac, what do you want on your toast - jam or Marmite? Jam or Marmite? Zac! JAM or MARMITE?" I do not want to speak. "Zac, is Lily-Rose your brother or your sister?" "Zac, is Grandma's top pink or blue? Pink or blue Zac?" I do not want to speak. "Zac, are you happy or sad today? Happy Zac? Or sad Zac? Zac! Look at Mummy! Happy or sad?"

I do not want to speak.
I want Marmite on my toast. I know that Lily-Rose is my sister. Grandma's top is pink.

I am happy.
But I do not want to speak.

Key:
WHITE text is me, "speaking" as Zac
GREEN text is direct quotes from Zac
GREY text is background commentary or explanation

Welcome and Introduction

Welcome to Zachary's Zoo. This first post is me, Katie, typing. I am Zachary's mother, and in this blog I will attempt to be Zac's voice, to give a little window into the life of a beautiful boy who views the world through a severely Autistic brain.

In future posts, I will be "speaking" as Zac... attempting to say what I think he would say, if he could.

Recently Zac has developed a little language of his own. When I am quoting Zac directly, I will be using green text. Any explanations or background commentary will be in grey text.

Zac has a little brother, Luca, who is 5, and a baby sister, Lily-Rose, 4 months old. Adjusting to the new baby has been difficult for Zac and has brought out his violent side. Yesterday he said:

"A different Zac. A different Mummy. A different Daddy. A different Luca. A different Lily-Rose."

Was Zac saying that he WANTS us all to be different? Or that we ARE different? Or something else? It was really this that prompted me to start this blog. I want to understand my son more, and to remember all the amazing things he is saying and doing.