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!