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Louise – “A day out without words”

Written by Louise Walters, adult sibling to brother who has autism

We are going to the farm today and we are going to have a picnic. You watch me write the words on your white board. You jump up and start pacing the minute I put down the pen. You are ready to leave now.

I tell you to go and put your shoes on and get your coat. I speak to the care staff to find out how your morning has been. You woke up at 4:30 am after two hours sleep. You were pacing your room all night and peeking out of the curtains to see when it would be light enough to get up. If you didn’t have Autism, you would at the age of 22, be getting two hours sleep after being out on the town.

We gather all the things we need to take on a day out together. We must have your epilepsy medication and a pillow in case you have a seizure. We need some spare clothes and shoes and your camera for all the photos you will take. We say goodbye to the staff and make our way out of your flat and to the car.

You are so excited to be going out in the car you are jumping and bouncing. I’m nervous and thoughts are whizzing around in my head. Have we remembered to bring everything? Will we have an enjoyable day? Will something go wrong? You strap yourself in the car and the minute we start driving you are recording a video of the world going by out of the window. You like it best when I turn the music up to a really loud volume in the car. People walking along the street stare at the car driving past blaring the Tweenies theme tune.

When we arrive at the farm you jump out of the car, and I rush around to your side. You are so excited, but there are so many cars in the car park that I’m worried. Most drivers think a 6-foot man will stop if they see a car coming but you would happily jump in front of it in the middle of a bounce.

We go to the farm ticket office and see the large queue. There are families with pushchairs and big groups of school children. You can’t possibly wait with all of these people. We walk quickly past the queue and to the front, there is lots of muttering and tutting.

We walk into the farm, and I breathe a sigh of relief. I had done hours of research to check that the farm will be spacious and that it will be a good day out for you, luckily it seems the website details were correct. Planning a day out like this takes so much research and time, I just want it to be right for you. I feel a sense of pressure to plan the day in a way that you will enjoy, it is only because I know you and all of your little quirks that I can do this. If things go wrong, I know I will blame myself and feel like I have failed you.

We visit the cows and the goats. You hold out your hand to feed the goats and giggle when they lick your hand. We steer well clear of the chickens because I know that you hate any type of bird.

Walking around the farm I can see your eyes taking everything in. It is the best feeling to know I’ve planned this day out and you are enjoying the experience.

But you suddenly now seem distracted. You are pulling my hand away from the animals in another direction. I’m second guessing what it could be. Are you hungry? Do you need the toilet? Do you want to leave already? I see now, the ice cream van comes into view. Again, there is a queue.

I try to persuade you we need to wait in the queue for the ice cream. I write on the back of a screwed-up receipt I find in my bag ‘good waiting’ then ‘ice cream’. It’s no good, you decide to borrow the ice cream that a small girl returning from the front of the queue has in her hand instead. Why wait in line when there is one just walking past? Luckily the girl seems to be stunned into silence. Several very cross words from the mother of the small girl later and we manage to walk quickly away and escape. I can understand it must be surprising for the girl and particularly her mother when a tall man walks over and takes an ice cream without warning. There are no flashing lights or sirens that say, ‘person with Autism incoming’. Although I can understand how they feel it doesn’t sting any less to be spoken to in an unpleasant way.

I think we should try and find some lunch. There is another queue but not a big one as it is only the middle of the morning. We walk to the café, and I order you some food. Although I’m hungry I don’t order anything for myself, I need to be fully focused on you, I know I won’t be able to eat anything until I get you home safe. The food arrives but you don’t seem happy. You are looking at the garlic bread as if it were an alien. You are pointing at the garlic bread and looking directly into my eyes willing me to understand what you are trying to tell me. This is the same meal you have eaten a thousand times before, what could be wrong with it? I look closely at the garlic bread and then notice the tiny leaf of parsley they have added. I call the server over and as politely as possible ask if they might bring back a new meal without the parsley. The server looks at me like I have lost my mind, most people would just take it off. I know that won’t be enough for you, we need a new one. The server returns with a new meal, and you are happy enough to eat it.

We leave the café to find it has started to rain. We try to duck under some cover, but it is too late. Your shoes are now wet which is one if the things you hate most in the world. You are pointing at your feet and trying to wipe the soles of your shoes with your hands to dry them. You know I understand what you are trying to tell me, but you are wondering why it is taking me so long to fix the problem. I pull a packet of tissues out of my bag and try to dry them off. You are holding on to me for balance whilst I wipe the soles of your shoes dry. The tissue drying method doesn’t seem to help today, there are a couple of small bits of mud on the rims of the shoes.  We will have to resort to plan b, luckily, we were prepared this time and packed the spare shoes.

I decide we should go and see the horses. Horses have always been one of your favourite animals. We find the horses and the delight on your face is beautiful. You call out a loud neigh sound at the sight of them. You walk up to a dark brown horse and place your hand on the bridge of its face. You stare into the horse’s glassy eyes, and it is like you are looking into each other’s souls.

You take photos of the horses with your camera. You pull me into the exact position you want from me so you can take my photo next to the horse. It always feels special when you want to take my photo, I know you want to look back on this moment that we spent together.

All of a sudden a nearby child let’s out a high-pitched wail. I’m instantly on alert as this is exactly the type of noise that you hate. I can see from your face all other noises have been drowned out and it seems as if the small girl is screaming directly at you. Your eyes look like you are in pain. This is your personal hell.

My heart is pumping. I’m poised to react. I know you just want to stop the noise, but you don’t know how. Does the little girl have an off switch like the car radio? I need to be prepared that you might try to stop her from screaming. My mind is suddenly ten steps ahead. Will we have to leave? Will I have to restrain you? Will someone phone the police?

I’ve got to think of a distraction and quickly… ‘From the day we arrive on the planet And, blinking, step into the sun…’ I’ve pulled my phone out of my bag and I’m playing full volume The Lion King soundtrack. People are staring but it doesn’t matter. Slowly your eyes move away from the screaming child, and you reach out to take my phone. You change the track until you find the one you are looking for – Michael Buble, Cold December Night playing volume 100 in July in the middle of a farm.

I decide that we should head back to the car after this. We haven’t seen everything in the farm, but I can sense that you are ready to leave. We make a quick stop off in the shop. You buy a plastic elephant toy. This is the exact same elephant you had when you were a toddler – it always amazes me that you can remember the toys you had when you were little and that you still love them now.

You are happy to be back in the car and rocking steadily backwards and forwards. You are staring intently at your toy elephant. I think you must be checking that every tiny detail is the same as the one you had. You seem satisfied it is the right one because you take a few photos of it in different positions.

We are back in the car and I feel relieved that we have made it through the day and you seem to have enjoyed yourself. As long as you have had a good time, that is enough for me and it makes everything worth it. I am already thinking ten steps ahead to when we take you back to the carers and what I will need to fill them in on. In the back of the car, you turn to me. You lean forward and place your nose against my nose. There are no words needed, I know what this means. This means thank you. It means I know all that you do for me. It means I love you.

Would you like to help other siblings by sharing your own story? Please get in touch.