SUMMER HOLIDAYS!

I'm really sorry that I haven't posted much these last few weeks. Am struggling to find the time during this long school holiday (especially with a 5 year old and a baby, as well as Zac!).

So please check back in September when the children have gone back to school - I promise a wealth of new posts: I will finish the senses series and post all about Zac's activities over the Summer holidays. Please don't forget us! See you in September! Love from Katie and Zac.

The Senses: HEARING

I like listening to music, especially Yellow Submarine, Dancing Queen and Letter from America.

I like listening to Mummy singing, and my Spot DVD and The Cat in the Hat (especially Green Eggs and Ham!).

I like the sound of the waves crashing at the beach, and the squeaky noise when I rub my squashy books and the SPLAT when I throw my food on the floor!

BUT there are lots and lots of sounds that I do NOT like, and some of them hurt my ears so much that I cry and cry. When the noises hurt me, I put my fingers in my ears to keep them out. This makes me feel safer.

When the noises are really loud, my fingers in my ears don't work and the sounds still come in, so I talk or sing as loud as I can to block those noises out!

These are some of the sounds that hurt my ears:

• Children talking, singing, playing, shouting
• The hoover
• Clapping
• The shower
• Lily-Rose crying (it hurts my ears, but it makes me laugh too!)
• Cross voices
• The washing machine when it spins really fast
• Hand-dryers
• Outside noises, like traffic, or people (when I don't know what is going to happen next, I put my fingers in my ears... just in case)

Sometimes, even when it is quiet, and even when I am not scared, I put my fingers in my ears anyway and feel happy and safe inside my head, listening to the sounds of my body.

But there is something I LOVE even more than fingers in my ears, and that is... my BLUE HEADPHONES! Mummy puts them on me and I sit and smile and listen to Green Eggs and Ham!

Poor Zac - he really does suffer with his hearing, and often becomes very distressed and frightened by the noises around him.

When he was a tiny baby (long before he was diagnosed with Autism and Sensory Processing Disorder), I used to be so concerned that noises like the hoover seemed to cause him real physical pain (despite all the baby books and friends and relatives telling me that all babies "loved" those kind of white noises and it should help them to fall asleep!). I have since learned to trust my own instincts with regard to Zac, and to ignore those baby books... more on that in a future post, I think!

When Zac discovered that he could put his fingers in his ears and block out the distressing noises, it was a big help to him. Any way for him to control his environment is wonderful, as he has so little understanding or control of what goes on around him. And the headphones are great because they serve the double purpose of blocking out unwanted noise as well as providing the stimulus and entertainment that he loves. (If only we could teach him to operate the iPod himself, now that really would be fantastic!) But for now, it's "Green Eggs and Ham" on the menu several times a day, courtesy of Dr Seuss!

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

The Senses: TOUCH

I hold my Maisy book in my right hand and I bang it with my left hand, over and over and over. Sometimes I bang in time to the music, sometimes I bang in time to my singing, but I always bang my book... it makes me feel safe and happy.

My Maisy book is squashy and smooth, and so is my pig book and my dolphin book. Before Mummy and Daddy gave me my squashy books I banged every kind of book I could find, and I banged them until they fell apart, until my hand was so sore and bruised, but I just couldn't stop!

I like using my hands to see what is around me...

I like to dig my fingers into mud and soil.
I like to squish baked-beans and rub the bean juice in my hair!
I like to pat Grandma's face, all soft, gently gently and then... SCRATCH!
I run my fingers down the television screen, over and over, feeling the smoothness.
I look for puddles, spills and drips and rub my hands in the water.
I like to hit my squashy books as hard as I can.
I like to hit faces as hard as I can.
I like to hit Lily-Rose's face as hard as I can.
I like to stroke Mummy's hair (and sometimes pull).
I put my hands in my nappy and squish my poo. Sometimes I spread it all over my bedroom!


(Sorry if that last point is too much information, but that's the reality of severe Autism, I'm afraid!)

I've decided to do the next few posts on the various senses and how Zac is affected by Sensory Processing Disorder (SPD), which is a condition that many Autistic people suffer from. (By the way, did you know that there are many more than just 5 senses? In later posts I will talk about some of the internal senses affected by SPD, such as the Vestibular and Proprioceptive senses.) The condition manifests itself as hyper or hypo-sensitivity to the environment.

Zac's SPD affects all of his senses, in particular his sense of touch, and it causes him to suffer from "hypotactility" - this means he will actively seek out tactile experiences because he does not get enough tactile stimulation in the normal way.

One of the ways he does this is to bang things with his left hand (despite being right-handed). He has done this since he was a toddler and it seems to calm him in some way. It is a very real need, and if he has nothing to bang he can become very distressed. At one stage he was doing some real damage to the joints in his left hand (as well as systematically destroying our entire collection of books!), and it was a huge relief when we found that he got the same stimulation from the squashy "bath" books, but without hurting himself.

Zac had regular Sensory Therapy in his pre-school years, which did help a little with his SPD, but sadly this isn't available to him any more. We are hoping that the Occupational Therapy and access to sensory play and the sensory room at his new school (which he starts at in September) will help him with this hypo-sensitivity.


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

London

Mummy and Daddy said we were going to London to see the Queen's house and a big building called the National Gallery with lots of colours and paintings in it. There was no picture in my head of where we were going and that made me feel scared. I don't like going somewhere that I don't know.

But I DO like going in the car, listening to the Proclaimers and banging my pig book in time to the music! Daddy did the cross voice when I kept pressing the music buttons with my toes, but I wanted to hear the same song over and over, and I didn't like it when it kept changing.

In London there was so much noise and so many people that I did not want to get out of my purple chair at all. I put my fingers in my ears and leaned forward so that I could not see the people.

We had lunch in Old MacDonalds and I bit and threw my chips at all the people around me. Mummy and Daddy did the very cross voice. I threw my fish fingers on the floor, and then the ketchup - such a good SPLAT it made! I grabbed and poured Daddy's drink all down me - so cold and wet! Mummy bought me a new t-shirt - blue with a red heart - warm and bright.

A long, long walk to the Queen's house, fingers in ears, safe in my purple chair. I didn't see a house or a queen... just a big building that Luca said was Duckingham Palace. Lots of black railings with gold tops that made me feel dizzy, and people everywhere. Daddy said, "Are you having a nice time, Zac? Yes or No" and I said Nice time, No.

Mummy said "Time for the National Gallery now" and another long walk, but this time there were so many people that we couldn't get through. Bright rainbow flags everywhere and music and dancing and so much noise that even my fingers in my ears didn't work.

At last a cool quiet space and a ride up in a lift. Then bright light and huge rooms for me to run in! I got out of my purple chair, but the ceiling was so high I thought it might fall on me, so Daddy held my hand. On the walls big squares of bright colours and shapes - a tiger, some big yellow flowers, babies with wings. On the floor, tiny patterns and shapes. I took off my socks and ran and banged my pig book and shouted and laughed. A blue man spoke with a cross voice and told us to go out of the room. Then I heard Daddy do a cross voice too.

Afterwards, chocolate cake and a gingerbread man, and then a long walk back to the car. Not many people now... I slouched down and let my bare feet trail on the ground, feeling the warm smooth pavement. Daddy kept telling me to sit up and that I would hurt my feet, but I kept sliding down again, enjoying the sound of my feet swooshing along.

Home at last. I did not like London and I did not like the Queen's house... but I did like that chocolate cake!


Some explanations:

• Old MacDonalds is Zac's special name for McDonalds!
• The "Queen's house" is, of course, Buckingham Palace (though we preferred Luca's name for it!)
• The dizzyness caused by the black railings is an unfortunate result of Zac's Sensory Processing Disorder. Lots of vertical lines in a row can really affect his vision and cause him distress. At one time he couldn't walk past railings or fence-posts or even get through doorways without hysterics. He's a lot better with vertical lines now, but they can still stress him out from time to time. (He also has a problem with high glass ceilings, as mentioned in this and other posts.)
• On our walk to the National Gallery, the "bright rainbow flags" were part of the London Gay Pride march, which we hadn't realised was on that day! Luca loved seeing the colourful costumes and the parade, but it was yet another source of sensory stress for poor Zac.
• The "blue man" was of course one of the curators at the Gallery who, unfortunately, demonstrated a real lack of awareness and understanding of people like Zac. We were made to feel very uncomfortable when he asked us to leave as Zac was banging his book and making noises. It's difficult enough coping with people staring on a daily basis, without encountering such open hostility as well. And Zac surely has just as much right to enjoy the Gallery as anyone else! After lots of explanation (and a few heated words!) hands were shaken and we continued with our appreciation of the wonderful works of Picasso, van Gogh, and Seurat.

All in all, we felt a real sense of achievement for successfully taking Zac (plus a 5 year old and a baby) to London and back. The day certainly had its moments, but it felt great to do something "normal"!

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

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

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

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