A Morning in the Life of Autism…

It’s 6.30am and I’ve woken up. I look at my gro-clock and can see it’s still blue. This means I can’t get up yet. I shout to tell Mummy I’m awake and need a wee. She tells me to go to the toilet. That makes sense so off I go. I do this by myself. Mummy is listening to make sure I’m safe (I wonder if I can reach my bath toys if I climb on the toilet…oops Mummy just called out to see if I’m ok). Mummy tells me to go back to bed. I get a book from my book shelf and my soft toys and lay on my bed with the covers on my head.

The Gro Clock has turned yellow. The sun tells me I can get up now so I gather up 3 soft toys and 3 books and go to Mummy and Daddy’s room. This is my routine, I feel secure as I control this. I asked Mummy what’s happening today. Not everyone understands me when I talk. I find it hard to make sentences so often I’ll say key words and you should really know what I’m on about, right? Mummy says I’m going to Tumble Tots. I like Tumble Tots so that’s a good answer.

I climb onto the bed and tell Mummy to put the TV on. She puts on Milkshake TV and its Shane the Chef. I didn’t like this when they first put it on. It was new and different. That means the day is different and I don’t like that but now I’m used to it. This is normal now. Then its Peppa Pig. They’ll play 2 episodes. I tell Mummy this just to make sure she knows (I tell her every morning).

I roll around on the bed and watch TV, whilst talking to Mummy and Daddy. I like to tell them about Star Wars…I like to tell them what happens in the movies and cartoon. It’s really annoying when they don’t repeat it back to me or answer me with the way I like them to answer, so sometimes I have to repeat what I say, just to help them realise they’re getting it wrong.

Peppa Pig has finished so it’s time to go downstairs. I set out my Star Wars figures and vehicles, then I get my Sticklebricks and Duplo out ready to create my spaceships. Cbeebies is on in the mornings…it has to be on when we get downstairs. I don’t like it when the TV is turned off. One of my professionals thinks it’s ‘predictive sound’. I know what noises the shows will make which is comforting.

Mummy makes me breakfast. She knows it has to be the right colour ‘bars’, with my vitamin cut in half and fruit. I sit on the floor to have my breakfast in the morning. Mummy would rather we sit at the table but I find that just too much first thing. Sitting on the chair, sitting still…nope. I’ve just spent the whole night being still. I need to move around now.

I reenact some scenes from Star Wars and build my models. I tell Mummy the name of which ship I’ve built. I know all their names and I have to build them correctly…it’s just the right way to do things. I want the Ipad but Mummy says no. She shows me pictures of what we’re doing today. Right now I have to play, then we go to Tumble Tots, then it’s lunch time.

Soon it’s time to get dressed. It’s Tumble Tots day so I know I wear my yellow t-shirt. I like knowing what I’m going to wear. I have soft trousers on. Some trousers are just too ‘spiky’. Mummy puts my socks on carefully. She knows I hate if they are wonky or I can feel the toes. We get in the car. Mummy tells me that we are picking up my friend. We always pick up my friend and her Mummy. Today it’s just my friend because her Mummy is poorly.

This is different. I don’t like this so I repeat over and over on the journey that my friends Mummy IS coming. But my Mummy keeps saying ‘she’s poorly so isn’t coming today’. Mummy repeats the same words and after a few minutes I am calmer. When we pull up, I’m not going to talk to anyone. Its different, the conversation will be different. We’ll be saying ‘bye’ not ‘hi’. My friend gets in the car. I like her. We’ve been friends since we were in our Mummy’s tummies. I tell her that her Mummy isn’t coming. She agrees so everything is ok.

We get to Tumble Tots. I know the building so I tell Mummy when we drive up to it. This is the same building we always go to so I run straight in. Everything is going as planned. We are called to ‘train time’ (this keeps us children together so we can be led to the activity). I want to be the train driver. Mummy thinks it’s because being at the front is less stressful for me. I can be led to where we are going, I can see better, it’s less crowded and less fuss. We sit together and the lady talks about Easter. It’s not Easter now so I look around me. We’re asked questions and I say yes to some even though its not the right answer. I don’t really know what we’re talking about or why because its really not Easter.

She says she’s going to put the music on. She doesn’t say what the music is so I suggest Star Wars music. I know Star Wars music, I can predict that and it’s not different or unknown. This will make everything better. She’s not answering me, she’s talking but it’s not the right words. The music comes on and I can feel myself shutting down. I look at Mummy. She smiles at me. I’ll tell her about this later, repeatedly.

We make our train and I’m at the front. I’m the train driver. I am taken to the first ‘station’. Mummy calls them stations. She says we have to stay at the station until train time. That makes sense. We sit down and the lady tells us what to do. I can hear her talking, I can hear children, I can hear other grown ups talking. The door is open and I can hear noise outside. There’s lots of colour here and lots of different things to look at…I wonder what it feels like. I’m told to sit down and sit still. I like it when I’m spoken to one to one so I sit back down. It’s easier for me than when grown ups talk to the group. How am I supposed to know they are talking to me? There’s lots of ladies so our station groups are small. I like going on all the equipment. It’s fun and I get to feel different movements. Sometimes I don’t like the textures on my feet so I go on tip toes and don’t use some of the equipment. I have a purple beanbag (even though I call it pink) to hold onto. This must be my beanbag. I must make sure I keep it.

I usually have ‘wait spots’ so I know when I have to stop and wait for the grown up. There isn’t any today so I obviously can just get on with it. I don’t understand ‘safety’. I rely on grown ups to teach me, show me and look out for me. I get told to wait as I’m climbing up with another child. I don’t get why as there wasn’t a wait spot. So I start to rock on the equipment. Rocking is great. Rocking is calming. I can control this. The lady tells me I shouldn’t be rocking it. I carry on with the game. The pink beanbag isn’t there. I run back to where I left it and get it. Other children are taking other beanbags but I was given the pink/purple so I need to get it back. I go back to where I’m meant to be afterwards. I keep going round. I know to stay at my station.

The session carries on and I’m having fun. One of the resources is a ball to roll over. This is my favourite as it is a vestibular movement. I often seek this by spinning and rocking and rolling. We move onto the next equipment and again I am given a toy to hold. This time its yellow. I need to remember that yellow is mine. I’m getting good on the equipment. Mummy says she can see that the group benefits me and I’m getting more confident with climbing and balancing. I put my yellow toy in the box when I’m meant to and climb up onto the equipment. It’s new so the lady helps me. I don’t mind being touched when they are helping. It’s purposeful and firm (Mummy told them I like to be touched firmly, not lightly). I don’t like it when I’m touched randomly by people. I don’t control that. I don’t know what it means or why they’ve done it. It can make me cross or upset. But this is ok. This is to help me. I see a rope. On my very first lesson we had a ropes ladder and the lady said we couldn’t touch the knots on the end as they are ‘naughty knots’ and can hurt (which I know because I touched one and it didn’t feel nice). I ask the lady if these are naughty knots. She didn’t understand me though and thought I’d said “naughty rats”.  I just get on with it as I realise now there aren’t any naughty knots on this rope.

When I get to the other side we have to pick up the toy again. I look for my yellow one but it’s not there. It’s ok though because I remember where I put it. I go to get it but am told to go back. They try to tell me to pick another one. They don’t understand, I’m yellow…I must have the yellow because that’s the one they gave me. That makes sense. Why would I pick another colour? I can see where my yellow one is now. Another boy has it. That’s not right because its obviously mine. He’ll know that so I can take it back. But wait, he’s not letting me have it. I can’t understand this. It’s mine and he MUST know that. It makes sense for him to give it to me, it doesn’t make sense for him to have it. He wasn’t yellow. I can hear people talking at me, I don’t listen. I can’t. I’ve got to focus on making things right again.

No one is listening to me. No one is understanding so I run over to Mummy. She’ll make everything better. Mummy talks to me. She explains that someone else has it which means I have to chose another. She tells me that it’s ok to have another colour and that I can still play. I can still join in and go on the fun equipment. That makes sense and I start to calm down. I’m extra bouncy now. My ‘fight or flight’ is activated so adrenaline is running through me. It’s too late to go on the equipment now as it’s ‘train time’ so I go to the next activity. I’m upset at the sudden (to me) change again. I don’t want to join in train time. Mummy tells me if I don’t join in train time I cant go to the next bit of equipment because I need to follow my group to get to the right place. I get there just as the ‘train’ has reached the last activity station. By now I’ve lost my concentration again. I am given a purple toy. I start to run around the space I’m in. That’s what toys are for, right? Running and throwing and playing? I’m still worked up and I need to move around to feel in control. I’m told not to run around. Then we have to find the spot on the floor which matches the colour we’re holding. That makes sense, purple goes with purple. But someone is standing on it. They’re wrong. I tell them to get off…I don’t use my hands (Mummy and I have had lots of ‘social stories’ and ‘what happens when…’ talks so I’m learning to use my voice). She moves and I have my purple spot.

I try to mimic what I see around me. I can’t listen anymore. There’s too much going round in my head. I don’t really follow what I’m meant to do but I’m having fun. I try to run around some more but I’m told to find my spot again. Then we put our toys away and the other children come to us. Now it’s group time again. Everyone is here. I sit next to a boy. I copy how he is sitting and look at him. He looks back at me. I’m happy. Then we stand up and music comes on. I spin in circles around the boy who looked at me. He must be my friend because he looked at me. I will run around him because that makes me happy so will make him happy. This is me being social. Everyone is dancing. At first I watch. I don’t know this song. But I see the lady and my friend spin around and I like spinning so I join in. I jump and wave my arms and spin. I stay on the outside though (I’ll be upset if someone touches me or bumps me). When the song finishes I know its time for a sticker. We get a sticker every time. I get my sticker and run straight to show Mummy. She gives me a hug and tells me I did really well. Praise is important to me. I need to hear positive reinforcement and what I did right so I can learn that that is what I’m meant to do.

My friend is tired. She is quiet on the drive home. I offer her my drink but she says no. She has to take my drink, I’m giving it to her. She still doesn’t take it so I cry and tell Mummy. Mummy explains that my friend is tired so doesn’t want a drink now. I say “oh” and stop. That makes sense. I need things explained to me as I don’t understand how other people are feeling. I don’t like feelings. They are unpredictable and I cant control them. I may laugh when someone gets hurt, I will shout at someone who is crying…this is because I want them to stop. I don’t know what to do until someone explains it.

We drop my friend off. Her Mummy is waiting for us. I don’t want to say goodbye. I don’t want to talk now. Her Mummy isn’t meant to be at the house, she is meant to be in the car. I can’t control that but I can control if I talk or not. We leave and go to Grandmas house. I like Grandmas house. It is fun and safe. I know where everything is and who everyone is. I know what food she will have for me in her fridge (because Grandma knows my food difficulties and stocks up on things she knows I’ll eat and drink). I get my Lego box and sit down to build my space ships. I’m safe, everything is predictable. I go into my bubble and can shut out the world now. Now I can recharge, de-sensitise…oh and I’m humming the Star Wars music.

Note from Mummy:This is just 6 hours of J’s day. You can see how much his body and brain have been through in that short space of time. He still has 5 and a half hours till bedtime from this point. That’s half a day with more transitions (getting home, dinner, bedtime), sensory input (car journey, noises from outside, noises from inside, change in light and temperature, food texture) and social expectations (to resist the urge to jump on me, not to touch the cooker, to leave the cat alone/be gentle etc). It’s difficult when you get looks from people, or you hear grown ups talking to J as if he’s naughty when we’re out and about. He’s no angel, but he’s not naughty. He’s a little boy who sees the world differently to others. He needs guidance to navigate this world and acceptance for the amazing person he is.  Tumble Tots have been very welcoming. I know its not a group for children with additional needs so I wouldn’t expect them to have an in depth knowledge of autism. I think they are learning about J each week. They made the effort to ask me questions such as what form of touch he accepts, we did a transition period where I went around with him for the first two weeks and they introduced the ‘waiting spots’ for him which were a big help. J likes the ladies and is happy to go to any of them, hold their hands and always shouts a big ‘hello’ and ‘goodbye’. If you have a Tumble Tots in your area I’d very much recommend it looking it up!

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4 Comments Add yours

    1. mummyest2014 says:

      Thanks, it was really interesting writing as ‘J’ and thinking how things feel and how the world looks to him x

      Like

  1. Orli D says:

    You really took me back to when Yon was younger, your J sounds so much like him 🙂 It did get better for him and for us in a lot of ways (the talking, the coherent sentences, the being able to eat breakfast at the table, the being able to accept changes a little bit easier, and so on). Though he still hums Star Wars music 🙂

    Liked by 1 person

    1. mummyest2014 says:

      Aw that’s lovely to read about older children and progress/changes. J always hums the ‘dark music’ so not sure if I should be concerned 😆 x

      Liked by 1 person

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