Tuesday 30 June 2009

Birthday

Mummy and Daddy said "It will be your birthday tomorrow, Zac. You will be 8 years old."

In the morning, Mummy and Daddy and Luca say "Happy birthday, Zac!", and sing the Happy Birthday song. Mummy says "How old are you now Zac? Are you 7 years old, or are you 8 years old?" I say Are you 8 years old, and Mummy says "Yes! Good talking Zac!"

Mummy and Daddy take me to the garden and there is a little bouncy castle... I love to bounce. I taste the bright colours, blue, orange and green. I want to bite and bite until I hear the Pop!

Grandma gives me a present. It is blue. I stroke it and pat it with my hands. It is smooth and shiny. Mummy says "Open it, Zac" and she tears the paper. I put the bits of paper in my mouth and taste and chew... I spit them out again.

Inside is a book, smooth and squashy. I rub the book with my fingers and then pick it up and bang it over and over again. It feels nice, like my Maisy book and my pig book.

At school there are little chocolate cakes and the Happy Birthday song again.

After school Mummy and Daddy take me and Luca and Lily-Rose to Kidzone and say it is my party. There are lots of children and lights and noise and more coloured presents. Mummy takes the paper off but I want it to stay ON. More squashy books to bang.

I run and touch the wall, climb the slope, down the slide, past the ball-pit, touch the green mat, and back to the wall and begin again, over and over. This makes me feel safe and happy.

Time for tea and the little room fills with children. So much noise, fingers in my ears. A blue cake with Thomas the Tank Engine and flames that make my face warm. The Happy Birthday song again. "Blow out the candles, Zac!" says Daddy. Blow out the candles, Zac, I say, and suddenly everyone blows, breath on my face, and the flames are gone. Chicken nuggets and chips... I bite, spit out and throw my chips at the children.

After tea, I climb up high and there is music and I dance and smile. Soon the children are gone, and I run and laugh and bang my book, and the noise in my ears is all better. But Mummy and Daddy say my party is Finished and it is time for home.

Daddy says "Zac, did you have a nice birthday? Yes or No?" And I say Nice birthday, Yes!


Birthday celebrations are always a tricky time for Zac. Changes to his routine, lots of noise, and even the presents can all be a source of distress for him. He still doesn't really understand presents, and he doesn't play with toys, and has no interest in material possessions whatsoever. But he does enjoy banging books! (More on that in a future post...) So this year we asked everyone to get him a squashy book, which he seemed quite happy with. He also enjoyed the bouncy castle in the garden - though it won't last long - he always eventually bites through anything inflatable!

All in all, he seemed to enjoy his special day, and for us that means mission accomplished!

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

Tuesday 23 June 2009

Church

On Sundays I go to church with Mummy and Daddy and Luca and Lily-Rose.

Sometimes Ann looks after me, and sometimes Jenny or Anna. We go in the big yellow garden and I run up and down with my shoes off, banging my book and feeling the grass beneath my feet. We throw Humpty-Dumpty up in the air over and over again.

In the sensory room Ann squashes me between the cushions and I laugh and laugh. We sing songs and switch the lights on and off. I watch the bubbles change colour as they whoosh up the bubble tube.

In the hall I see Luca and the other children listening to a story, or singing or painting. I watch them as I run up and down the hall banging my book. I copy the words that I hear, and they turn and look at me. Hello Zac! say the grown-ups. Hello Zac, I say.

In the creche I lie on the settee and drink my juice and watch the babies crawling on the floor. There are lots of books for me to bang in here.

In the Big Church I listen to the music and the singing. There are lots and lots of people and bright lights. Sometimes the lights hurt my eyes and I cry. Sometimes the ceiling looks so big and high that I think it will fall on me and I cry. But sometimes I just run up and down, and the people smile at me and say Hello Zac! Hello Zac, I say.

Sometimes I run up the spiral staircase into the sound room. I like being up in that small space, but I'm too scared to come down again because I can see through the gaps in the stairs, and Mummy has to carry me down.

Sometimes I run into the toilets and turn the taps and the lights on and off, on and off.

After church all the people go in the hall and I sit in my purple chair and have a biscuit and Daddy shares his cup of tea with me.

I like going to church, and I especially like the biscuits!


Church means many different things to different people. To Zac it means running in the Vicarage garden (the "big yellow garden" as he calls it!), playing in the sensory room, throwing the "Humpty-Dumpty" toy, turning lights on and off, and just enjoying the space and the atmosphere.

We are very grateful to go to a church (St Justus in Rochester - http://www.stjustus.org/) that is so welcoming so well-equipped for children like Zac. There are many children with special needs at the church and we have built a sensory room as a safe environment to play. There is also a youth group for teenagers with special needs and their siblings. Zac has a one-to-one "buddy" assigned to him each week to look after him, so that the rest of the family can enjoy the service.

As far as spirituality is concerned, we really don't know if Zac has any understanding of God and what it means to be a Christian and follow Jesus. But we certainly believe that God has an understanding of Zac! And we trust God every day to help Zac and to meet with him on a level that we may never understand or know, but in a way that is right for Zac.

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

Wednesday 17 June 2009

Burnt

I say Burnt your finger, and Mummy says "Zac, have you burnt your finger?" in the worried voice. I say You HAVE burnt your finger, and Mummy comes to see my hands.

Mummy says "Which finger have you burnt?" and I say This finger. I do not move my hands. Mummy says "Which finger, Zac?" and I say This finger, and I do not move my hands.

So Mummy touches my little finger and says "Is it this finger, Zac?" and I say No. She touches the next finger and says "Is it this finger, Zac?" and I say No. Mummy touches all my fingers and my thumbs too, and each time I say No.

Mummy says "Poor Zac. Is your finger still sore, or is it better now?" and I say Better now. Mummy puts her arms round me to give me a cuddle, and I stay very still and let her.


Poor Zac indeed - his "burnt" finger is a real mystery! For the last 3 weeks now he has been talking about a burnt finger. We don't know if he is just repeating something that he has heard (echolalia), for example a child at school who may have burnt his finger, or whether his finger really is sore for some other reason, or whether he has just discovered the word "burnt" and likes it! There is no mark on any of his fingers to indicate a burn, and we have gone through the ritual of touching each finger and asking if that is the burnt one many times now, and each time he says "no".

Language is still fairly new for Zac and, like many children with autism, he gets "you" and "me/I" mixed up. For example, if he wants a drink he will say "Do you want a drink?", because that is what he hears when someone asks if he wants one - it's pretty logical! Hence why Zac says "Burnt your finger" instead of "Burnt my finger".

Also, when responding to a choice of two words, he will invariably choose the last one he hears. For example, if asked whether he wants an apple or a pear, he will always say pear. If asked the other way around, he would say apple! So, when I ask Zac if his finger is "still sore, or better now?" he will always say "better now", but this is not necessarily the case.

We do hope that Zac isn't really in pain with his finger, and will keep an eye on it. But you can see how difficult it is for children like Zac to express themselves if they are suffering pain, and how hard it can be to diagnose a problem.

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

Monday 15 June 2009

Throwing

I throw my bowl of cereal and watch the milk and branflakes swoosh over the table and drip onto the floor.

I throw my nectarine and it splats onto the kitchen cupboard.

I throw my juice cup onto the carpet and the lid comes off and I watch the puddle of blackcurrant spread.

I throw my book at Lily-Rose's head and wait for her to cry.

I throw my sun-hat into the river and watch it disappear.

I throw my grapes at Luca and wait for the big shout.

I throw my pasta onto the walls, the floor, the curtains, the cupboards, and see the big red patches of sauce.

I throw my whole plate onto the floor and wait for the cross voice.

In the garden, I throw everything I can find over the fence... I stand and peep through the gap to see where the things have landed.

I throw myself onto the floor...


Ever since Zac discovered that he could throw, he has enjoyed flinging things! As a baby and toddler he used to spend hours throwing his toys up into the air with a flick of his wrist that would make them spin.

Unfortunately his love of throwing has its downside, as you can see, especially at mealtimes. He will suddenly, and without warning or provocation, fling his food across the room, resulting in a huge clean-up operation and yet another spoilt dinner.

It seems that throwing is almost compulsive with Zac, and he gets such huge sensory feedback from throwing that this is his “reward” for doing it. (You’ll remember from previous posts that he suffers from Sensory Processing Disorder.)

It also seems to be a way for him to explore cause and effect, as he clearly enjoys the reaction that his throwing produces, as well as the sensation itself! We therefore try to keep any reaction to a minimum as much as possible… sometimes a very difficult thing to do.

We have tried every strategy in the book to help Zac to stop inappropriate throwing, but without success so far.

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

Monday 1 June 2009

Half-Term

Mummy and Grandma did not sing the Little Red Taxi song at breakfast today, and the little red taxi with Zoe in it did not come to take me to school, and I was sad.

I do not like home days because I don't know what is going to happen.

We walked to the Castle and there were people, so many people. I stayed in my purple chair with my fingers in my ears, leaning over to watch the grass moving beneath my feet as Mummy pushed me. But then I heard the music and saw the whirling shapes and lights - rides! I love rides!

In the teacup I closed my eyes and felt my whole body spin. Bouncing on the trampoline I flung myself towards the sky. Up and down on the swan ride, the people and colours and shapes whirled around me.

I cried when it was time to go... no more rides. I was angry.

Later, a picnic, under the tree that looked like broccoli. Still cross, I chewed and spat my food, threw my sandwich, threw my body, and kicked Lily-Rose lying on the rug. Fingers in ears, I rolled and squirmed, lightning running through my body.

Little red taxi takes Zac to school
Little red taxi, it is so cool
It goes quite fast and it goes quite slow
Little red taxi - that's the way to go!

No, I do not like home days because I don't know what is going to happen.


We try to inform Zac about his days as much as possible, using visual cues when we can, and verbal cues such as "First the park, then the green shop, then home". Autistic children, especially of Zac's severity, need predictability and sameness in their lives in order to feel safe. Zac's Special School provides a good routine for him, and he finds the school holidays difficult (as do we!).

He will be starting a new school in September - one more suited to his severe and complex needs, and we are hoping that the transition to his new school will be a smooth one.

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