Scared

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!

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

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

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

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!

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