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