Zachary's Zoo... a window into an Autistic brain

Scared

2010-07-27T22:09:00.016+01:00

There is no more school.

My teacher, Joanna, said there will be no school for lots of weeks and then I will have a new teacher, Zoe. I like Zoe.

But I do NOT like it when there is no school. No school means no circle time, no drink-and-snack time, no work-station time, no play-time, no music therapy, no sensory room, no assembly, no Sue helping me eat my dinner.

I like home too, but there is Lily-Rose crying and it hurts my ears and I want to hit her, and that makes Mummy do the cross voice. Luca’s voice is loud and shouty and that hurts me too. (I don’t hit Luca, because then he shouts even louder!)

So, today is a home day.

Mummy says “Zac, would you like to go to Asda?”. Most of the time I like Asda because there is fruit and chocolate and bread, but sometimes it is too noisy and too bright. I do want to go, so I say “would you like to go to Asda”.

Mummy says “Zac, do you want to go on your legs, or in your purple chair?” I think about the noises and the lights and all the colours and it makes my head feel funny, and I know I will feel safer in my chair, so I say “in your purple chair”.

In Asda my carer, Moby, pushes me in my purple chair, and I bang my squashy book and look at all the fruit. Mummy pushes Lily-Rose in the trolley and I try to kick her whenever she gets near. I grab the nectarines and peaches, and try to bite them through the stringy stuff, but Mummy puts them in the trolley and says they are for later. When is later?

Moby takes me to get the bread and I grab a loaf and bite through the plastic. Moby says “Oh, Zac!” and puts the loaf in the trolley before I manage to get some in my mouth.

Suddenly, I look up at the ceiling and see how high up it is, and all the lights are so bright and start buzzing in my head. The ceiling looks like it is going to fall down on me and I scream. My hands start to shake and I grab on to Mummy. She tries to cuddle me and says “It’s alright, Mummy’s here” over and over in the singing voice, but it doesn’t work and I kick out. I KNOW that ceiling is going to come crashing down any second. I know there is a word beginning with “sssss” that will tell Mummy how I am feeling and I think really hard. Then I remember… “I’M SCARED!” I shout as loud as I can. “I’M SCARED!”

I hear Mummy tell Moby that we’d better go now, and we go over to the tills. It is even worse there – the ceiling is even higher. “DO YOU WANT TO GET DOWN! DO YOU WANT TO GET DOWN!!” I scream. I want to get out of my purple chair and lie down on the floor where I know I won’t fall and I can close my eyes to shut those lights and that ceiling out.

Moby takes Lily-Rose’s trolley to the till and Mummy wheels me to the window and says “Shall I take you to the car, Zac?”. “GET DOWN GET DOWN GET DOWN!!!”, I scream, and Mummy gets me out of my purple chair. I run to the wall and drop to the floor.

Safe.

“Come on, Zac, we need to get to the car now”, says Mummy. She tries to lift me.
I will not move.
“Come on, Zac, stand up! You’ll feel better in the car.”
I scream and do not move.
I know that if I move, the ceiling will fall on me.
Even if I get back in my purple chair.
Even if Mummy is cuddling me.

Mummy and Moby spend a long time trying to make me stand up and get back in my chair. I scream and kick. I wish they would just go away. I just want to lie here and be quiet. I wish everyone would just LEAVE ME ALONE.

In the end, Mummy holds my arms and Moby holds my legs and they pick me up and put me back in my purple chair. I scream and kick and try to wriggle free, but it’s too late. Quickly Mummy wheels me back to the car, and once I am strapped in my seat I do feel better.

I just want to go home now.

Poor Zac. This is Sensory Processing Disorder at its absolute worst. Noises, lights and, at the moment, high ceilings are a real problem for Zac, and really adversely affect his vestibular sense (to do with balance). This meltdown at Asda was one of the worse attacks of SPD that he’s had for a long time and it was hard enough trying to deal with Zac, let alone the stares and comments of those around us - I’m still trying to develop a thick skin, even after all these years with Zac! For the rest of the school holidays it will be online supermarket shopping only!

(By the way, in the picture Zac is wearing a bib. This is because he is constantly chewing his clothes at the moment (another side-effect of SPD), and we would rather he made holes in the bibs than in his clothes - he's already ruined ALL his school uniform t-shirts!)

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

A Word from Zac's Mummy!

2010-07-16T14:57:00.008+01:00

This is Zac's blog, and is usually written from his perspective on life. But I'm going to hijack this post to say two things:

1) I am aware that I haven't updated the blog for a while. There is lots of news and progress that I want to share with you about Zac (plus, he's had a birthday!), and hopefully I will get a chance to post this soon. So please keep checking back!

2) The 6 week school Summer holidays are almost here. This can be a difficult and frightening time for families with an Autistic child. I recently posted the following thoughts about the school holidays on my Facebook page, and had an enormous response, several people saying that I should post it on Zac's blog. So here it is...

"I have had discussions with many parents over the last few days about the looming Summer Holidays, and have made some observations… you can read these in below. I’m not trying to make any point here, or cause offence, or indeed stereotype anyone. Every family is different. But please spare a thought for families with an Autistic child over the 6 week break, and maybe offer some support if you can...

‎1) Most parents of “normal” (neurotypical) children are looking forward to the school holidays - anticipating lazy days in the garden, at the park, trips to the cinema, days out and holidays away. They welcome the break in routine, and the freedom from the time constraints of school hours and the school run. No scrambling around trying to assemble school uniform, supervise homework and make the packed lunches for a few weeks.

‎2) However, my friends with Autistic children are looking forward to a different kind of Summer. Most of them are now feeling the familiar onset of anxiety and fear as they wonder how they will get through the six week break. They know that the break in routine will cause nothing but distress for their special children. “Normal” activities like a trip to the park or cinema are by no means straightforward and, in many cases (including my own), impossible. They are cringing internally at the levels of mind-numbing tiredness they know they will feel at the end of each day, the destruction in their homes that will surely take place, the sense of failure as they feel they have let down their children and failed to provide the idyllic, happy, holiday experience that they suspect every “normal” family is having.

‎3) I know the school holidays can be tough on ALL parents, and especially on working parents as they try to juggle child-care over the six week break. But I know how much harder it can be for parents of children with special needs. So, I guess I’m saying that I want to salute all those parents who struggle through the Summer holidays and, to quote High School Musical (and David Cameron!), “We’re all in this together!”. Let’s try and support each other – even if it’s just an encouraging message on Facebook."

That’s it. Thanks for reading!

Soft

2010-03-03T22:03:00.019Z

When I come home from school, the first thing I look for, even before my juice and biscuits, is my Nice Big Pillow.

It is very big, soft and blue and is my favourite thing to play with. I love it more than my squashy books, more than my plastic camel, and more than my swing seat. This is what I do with my Nice Big Pillow:

I put it on the settee and bang my head up and down on it, over and over and over again! This makes everything look all fuzzy and makes my head dizzy. Sometimes it makes my head hurt, but I just can’t stop.

I lay on my pillow on the floor by the tumble dryer and enjoy the warm air and the noise. I put my hand on the tumble dryer and feel the vibrations.

I cuddle my pillow on the settee when I am feeling frightened, or if everything is just too noisy and busy.

But the BEST thing I do with my pillow is the Nice Big Pillow Game! This is how it works:

I say “Ha-AH, ha-AH, ha-AH!” and Mummy has to say “Oh, nice big pillow!”.
I say it again, “Ha-AH, ha-AH, ha-AH!” and Mummy says “Oh, nice big pillow!”.
I say it louder and louder, faster and faster, I want more, more MORE! “HA-AH, HA-AH, HA-AAAAH!” And Mummy says “OH, NICE BIG PILLOW!”

If Mummy doesn’t say “Oh nice big pillow”, I get a feeling in my tummy like I’m just going to burst until she says it. She HAS to say it.

I play the Nice Big Pillow game with Grandma too, and Daddy, and my carer Hannah.

I take my Nice Big Pillow with me almost everywhere, but I am not allowed to take it to school, or to trampolining, or swimming, or to have it in the bath, and that makes me sad.

I love my Nice Big Pillow.

Well, there’s not much I can add to this – Zac has said it all! The Nice Big Pillow is his comfort toy of choice at the moment, and we have no idea what the “Ha-AH” is all about, but it seems to make him very happy! We predict that one day soon Zac will suddenly and inexplicably move on from the Nice Big Pillow and become obsessed with something else – this is the pattern. Previously he has been obsessed with a hideous naked plastic boy doll, which he called “Donny” and carried with him everywhere, until one day he hurled it into the River Medway, never to be referred to again! There has also been Bedtime Bear, a pair of wooden dolls which he named “Cor” and “Mmm”, and a booklet about the Isle of Wight! I wonder what the next obsession will be!

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

Happy

2010-02-24T11:49:00.017Z

There are two things that make me happy at the moment.
The two things are: Sad Faces and my Nice Big Pillow.
Today I will tell you about Sad Faces.

Sad Faces make me laugh and smile and feel happy in my tummy.

I say “Want Mummy to do a Sad Face”, and Mummy says “Shall I do a Happy Face instead?” and I say “No no no no no, SAD FACE!”. So Mummy makes her mouth go down and sticks out her lip and does sad eyes and I laugh and laugh and jump and flap my hands.

I want it again and again and I say “To do a Sad Face! To do a Sad Face!” So Mummy does a Sad Face again. I jump and flap and laugh.

I want more, more, more and I shout “SAD FACE! SAD FACE! TO DO A SAD FACE!!!” Mummy says “One more Sad Face” in the firm voice and I know that is the last one.

So I find Daddy or Grandma to do a Sad Face for me instead.
At school I ask my teacher Joanna to do a Sad Face.
At Parklands I ask my carer to do a Sad Face.

(Sometimes I scratch Lily-Rose’s face and pull out her dummy, then she does a VERY sad face and cries, and I laugh and laugh and put my fingers in my ears because it is so loud. Mummy and Daddy and Grandma are very cross with me then.)

Mummy and Daddy and Grandma want to play Happy Face but I don’t like the happy face – too many teeth and eyebrows up high and eyes that look right into mine and make me feel strange.

I think the Sad Faces make Mummy and Daddy feel sad.
But they make me feel HAPPY.

We don’t know where Zac’s current passion for “Sad Faces” came from, but it is a real obsession with him at the moment, and we have mixed feelings about it. On the one hand it is fantastic that he is actually talking and asking for what he wants, and great that this involves real human interaction and gets him out of his isolated autistic “bubble” and into our world for a few moments. But on the other hand, it is a strange twist that sadness seems to bring him such happiness!

It may be that he doesn’t actually understand the concept of sadness, but that something about the angles and contortions of a sad-looking face really appeal to his sense of humour. We just don’t know at the moment. So, for now, we will go along with the game, in moderation… and see where it ends up. The obsession will hopefully just fade away (but hopefully the talking won’t), or may turn into something more serious, in which case we will take action!

(And as for the “Nice Big Pillow”, you will hear all about that next time… so please come back soon!)

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

The Senses: SIGHT

2009-09-12T22:26:00.002+01:00

I lie in my green animal bed looking up at the light. If I squeeze my eyes closed and then just open them a tiny, tiny bit, I can make the light go all fuzzy. I always do this with lights, just to test them out!

And I love light-switches! I turn them on, off, on, off. Whenever I go somewhere new, I always have to find the light-switches to see what they do!

But I do NOT like those square noisy lights - the ones that hurt my eyes and make that buzzing noise that hurts my ears. There is one of those at church and it makes me cry if it is on - I run as fast as I can and turn it OFF!

All around me are lines that go up-and-down, like door frames, lamp-posts, fences and railings. When I have to walk past up-and-down lines that are close together, like railings, I sometimes get dizzy and upset. I jump and cry and flap my arms, and lie down on the ground and close my eyes tight so I can't see those lines. Sometimes I can't even get through a doorway because those up-and-down lines of the doorframe are going to catch me. I have to close my eyes and try to squeeze through as fast as I can, but sometimes I get so upset and frightened that I just can't do it.

I do like looking at lights on the ceiling, but some ceilings are way too high and they frighten me, especially GLASS ones! Like the big glass ceiling at Bluewater... I look up at it and feel dizzy - I think I am going to fall up, up, up into all that space. And when the sky is dark outside, I look up at that glass ceiling and I see my reflection, tiny, tiny and upside down, and I just KNOW I'm going to fall upwards. I hold on tight to Mummy's hand and close my eyes and crouch down in my purple chair until I feel safe again.

Zac's visual perception problems are part of his Sensory Processing Disorder, and affect him differently at different times. At it's worst, the problem makes simple things like going through a doorway almost impossible for Zac, and vertical lines, like railings, can cause him real distress if he has to walk past them. It's quite hard to understand why it is so difficult for Zac, but we have to accept that he just doesn't perceive his environment in the same way that we "neurotypical" people do. Fortunately he is OK with doorways at the moment!

The vertical line problem started when Zac was about 3 years old and made going out and about very difficult. That's when we first discovered that Zac felt much safer when in a chair, but he was too big for a pushchair. Zac was referred to the wheelchair service and was first given a Maclaren Major Buggy (a huge pushchair for children with special needs), and when he grew out of that he was measured up for a proper wheelchair, which he calls his "purple chair" (as the framework is purple).

Many people find it hard to understand why Zac, who is physically mobile, needs a wheelchair. But Sensory Processing Disorder, which affects many autistic people in varying degrees, can be extremely debilitating and, in Zac's case, is at the severe end of the spectrum (like his autism). His wheelchair provides a safe haven for him when out and about and enables him to cope with the onslaught of environmental stimulus which his brain finds so difficult to process.

Zac has been facinated by lights since he was a baby, and loves to switch them on and off, enjoying the whole cause-and-effect process. But his SPD does cause him to have "hypervision" with regard to lights and it is almost as if he can perceive some frequency of light (and sound) that the rest of us can't. The "square noisy lights" referred to above are the big halogen ones you often find in large buildings, and do cause him some discomfort. I'm convinced that they also emit some kind of sound frequency that he can hear as they seem to hurt his ears too. Again, his sensitivity to these can be worse at some times than others, and at the moment he is not too badly affected.

The fear Zac has of high glass ceilings is still very much a problem however, and he seems to have real difficulty with depth perception. He suffers from some kind of vertigo when looking up at these ceilings and clings on to us, terrified that he is somehow going to fall UP! I believe it is similar to the feeling you get when swinging on a swing and looking right up towards the sky - try it, and you will have some idea of how Zac feels!

We do hope that Zac will be less affected by his SPD as he gets older, as the world can be such a frightening and distressing place for him at the moment. As always our two aims for Zac are to keep him SAFE and HAPPY!

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

SUMMER HOLIDAYS!

2009-08-07T20:54:00.005+01:00

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

2009-07-22T20:07:00.029+01:00

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

2009-07-17T19:22:00.014+01:00

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

2009-07-06T13:52:00.024+01:00

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

2009-06-30T14:17:00.025+01:00

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

2009-06-23T13:05:00.013+01:00

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

2009-06-17T21:29:00.012+01:00

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

Throwing

2009-06-15T12:23:00.008+01:00

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

Half-Term

2009-06-01T21:53:00.013+01:00

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

Away

2009-05-28T09:28:00.004+01:00

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

2009-05-26T11:09:00.017+01:00

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

2009-05-24T18:20:00.015+01:00

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

2009-05-23T20:55:00.001+01:00

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

2009-05-22T20:26:00.000+01:00

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

2009-05-21T20:50:00.000+01:00

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

2009-05-20T09:57:00.001+01:00

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

2009-05-18T18:21:00.000+01:00

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

2009-05-17T22:37:00.000+01:00

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.