Source: Why Are We So Adultish?
Last Sunday was potentially the best day ever on record.
I mean, if we ignore the fact that he told me to ‘go away’ when he first saw me. After that he was all hugs and kisses.
On the way to the swimming pool we played a real fun game: I pretend to put my hand in a holly bush and hurt myself and he grabs my hand and kisses it better. He thinks it is hilarious when I hurt myself. I try not to be offended. And then we bowled into the swimming pool and pranced around and played chase and I pretended to be a shark and Sonny kept dunking my head under the water which was fun and also kind of dangerous because he had no concept of how long I could hold me breath for. I nearly drowned.
But it was worth it for the LOLs. We had all the LOLs.
When we were getting changed in the cubicles I could hear someone telling off a child for being silly, and they said, “Stop being so childish!” Meanwhile, in a changing room a few doors down, myself and Sonny were, instead of getting changed, emptied out a whole bottle of talcum powder with great force onto our heads and bodies. It got me thinking, why are we so quick to tell a child to stop being a child, yet we rarely tell another adult to stop being so adulty? As a society we respect adulthood far more than childhood.
What I have grown to realise, is that adults are just children in disguise.
I feel conned by adulthood. Genuinely I feel like it is a hoax. When I was younger I used to think, “wow I can’t wait to be an adult! Look at them all, knowing about everything and being so wise and clever!” And then you grow up and suddenly you are expected to be an adult. And you wish you were a kid again, putting mud in your hair or pretending to be a dog, instead of trying to get your head around interest rates and how best to remove a wine stain from the carpet.
So when did we all stop playing? And why? It is so fun. And so important, and the most efficient way to learn. And generally makes all involved very happy.
Sonny taught me that. He is really quite a good teacher, though I doubt he knows it.
Sonny sometimes has meltdowns when we are out and about on our adventures. He had one a few weeks ago on Hampstead Heath when I told him he wasn’t allowed to get naked. He had one when we went to the mini village with my mum because it was too busy and crowded. He sometimes has one for what seems to be no reason at all.
I don’t like the word meltdown because it sounds like he is made of wax. But I can’t think of a better word to use so it will have to do. For Son, a meltdown refers to a combination of the following behaviours: crying uncontrollably, falling to the ground, kicking off his shoes (he hasn’t hit anyone with them yet but I feel it is only imminent), biting, head butting, hitting, running away etc.
The other day Sonny had one of the biggest meltdowns I have ever seen. Thankfully we were at his house when it happened (it started just when we were walking back to his house and continued for what felt like 3 hours but was probs only about 15 mins). His parents came back home and his Dad heroically stepped in and calmed him down. His meltdown then triggered my own kind of meltdown (I didn’t throw myself on the floor screaming but I did have a bit of a cry).
It has been four years since I have known Sonny, and yet it is still hard for me not to take it personally. I felt sad because I thought he hated me and that he never wanted to see me again. And in that moment I felt angry at the fact he has autism and was experiencing so much pain (autism acceptance is sometimes harder in those situations!). It felt so unjust that he has to go through that, and I couldn’t do anything to take it away. The helplessness of it is unbearable. Failure felt pants. But then I pulled myself together because this whole thing is way bigger than me, and how I feel.
I have always wanted Sonny to live a big life, or at least provide him with the opportunity to. But what comes with that is a hell of a lot of risk. He might like where we go or he might not. His eyes might light up when he sees a new animal, he might say a new word or try and make friends with another child, and he might hurl himself on the floor in tears and refuse to get up. Unpredictability is kind of his thing. Perseverance is kind of mine.
If I want him to experience all the good times, of course there are going to be some bad. Bite marks and hair loss come with the territory. If I want him to live a big life and try new things and go on adventures then by definition there is risk. To feel the peaks you got to feel the troughs. In my opinion it is worth it.
Sonny and I use public transport in London every time we see each other. Sometimes it’s a bus, sometimes a tube, or if we are feeling real fancy it’s a boat (we went on the Thames Clipper once). There was also a failed attempt at getting him on the Emirates Air Line, which we are definitely going to have a second go at in the future. As much as it pains me to say it, despite all the traumatic experiences I have had on London public transport, and all the personal issues I have against it, (like being my main reason for being late to pretty much everything) it has done wonders for Son.
If it’s the bus (usually the bus 82) I give Son my oyster card and he swipes it because he likes seeing the little red dot turn green. After having spent nearly two years telling him to say hello to the driver, he sometimes does it without being prompted. Then I give him the choice of where to sit and it’s usually, ‘up-de-stairs-peash.’ (up the stairs please) so we go upstairs straight to the back because that is where the cool kids go.
If he is feeling sociable we chat about what we can see, what the weather is like etc, but most of the time he sits quietly holding my hand or flapping his hands on the window. When there is someone sitting in front of him I spend the journey trying to prevent him from stroking their hair.
On the tube we go up and down the escalators three or four times before we get to the platform. We always wave at the driver as the tube comes in. Once we are on, I spend time trying to get him to stop licking the poles people hold on to. He sometimes finds it too loud or crowded, so I give him lots of cuddles.
We sit weirdly, we make strange and loud noises, we use sign language sometimes, and we (I) take a lot of selfies. But being on a bus or a tube allows us to learn about the world we live in, the different houses, the different people, and most importantly, gets us to anywhere we want to go.
Aside from the fact that being on a bus or train is a great learning experience for Sonny, I think it has some importance on a larger scale. The only way of challenging the social stigmas and views that are attached to autism is to not be influenced by them. If I didn’t take Son on a bus to avoid making other people uncomfortable or to avoid feeling embarrassed myself, then I am only perpetuating the view that autism is something to be feared or shamed or pitied. It makes me think that sometimes, an attitude can be just as disabling as a disability itself.
I understand people don’t understand, and I understand it isn’t someone’s fault for not knowing anything about autism, or even caring about it. That’s fine.
Sometimes people stare at us, sometimes people roll their eyes, and sometimes they say stupid stuff to me (someone once referred to Sonny as a mean boy). That’s not so fine.
But those reactions on some level make me feel like I should apologise for him. Like ‘Oh I am so sorry he is making a noise, or he is making you feel weird or he is lying on the floor.’ But I never do because I don’t think that is right. I just say ‘he has autism’.
He is how he is and that’s that. I won’t apologise to someone for him just being him. He has nothing to be sorry about. And he has just as much right to be on a bus or tube or anywhere else as any other city dweller.
I took him to see my Ma last weekend.
We took a bus and then a train to Beaconsfield (it was a long journey but Sonny was so good the whole way.) I showed him a picture of my mum on my phone to show him who we were going to see.
Mum picked us up from the station, and Sonny clambered into the car and gave her a kiss.
We went to Beaconsfield Miniature Village. Pretty much the coolest place I have been too ever. Houses, churches, trains, little people, a fun fair, rivers, everything. Sonny walked around holding my mum’s hand. He absolutely LOVED the trains (they moved around on the tracks). He would say, ‘look! A train!’ and then flap his hands on his leg while he watched it drive along.
I tried to tell him it was lunch time, and we walked away, but he said, ‘no.’ and ran back to the village part to watch the trains again. It is unheard of for him to turn down food.
Last year Sonny met my mum and when we said goodbye he burst into tears, and found it really hard to calm down. Mum and I had planned not to say bye so he wouldn’t get upset this time.
This plan did not work. Total failure.
We got out the car and mum drove away and Sonny could not stop crying. He was saying, ‘Mel’s mum, bye’ and then sobbing. I don’t know if he was sad because he thought I would be sad, or if he was sad because he loves seeing her. No idea. He eventually calmed down, and I thought not much more of it.
Yesterday I saw Son again. I took him to soft play (he even asked for the right bus. Genius. He said, ‘326 to soft play please’ so off we went. On the way back though He started crying and really upset again. I couldn’t work out why. Then he said, ‘I want train please’ and kept asking for it. I was very confused. I kept telling him it was home time, but that just made him cry even more. THEN HE SAID, ‘I want Mel’s mum’ and I welled up because that is SO CLEVER and also because I was a little bit jealous that he loves my mum so much. But mostly because I was proud.
The fact he remembered it, and the fact that he could tell me what he wanted and the fact that he effectively shows that he cares about someone else.
Some might say it’s a fairly minor victory in the grand scheme of things, but to me, for Sonny, it is ground breaking.
Despite the weather, I wanted to take Sonny to South Bank, as there was some sort of children’s festival going on. Unfortunately, Sonny took zero interest in the festival. Literally none. There was a stage and someone doing some sort of show. Loads of kids all sitting down listening and laughing. Sonny took one look at all this organised fun and tried to drag me out. There were a few areas for children, and I took Sonny into one, where there was drawing and painting and making things. This is basically his worst nightmare, but also my idea of a dream. As soon as he saw children sitting down quietly he said, ‘no. I want this way’ and pointed to the door.
So I was feeling kind of upset that my plan hadn’t worked. (This happens a lot, so I always have a plan B. I sometimes have to make use of plan C and plan D too. Not today though.) My plan B was not much of a plan at all, but just to cut about on South Bank and watch the street entertainment. We made friends with a woman in gold. Sonny stared at her for ages. Every time someone put money in her hat she moved. I gave him some money and he went up and she shook his hand. I ended up giving the woman about a fiver because he liked her so much. When we walked away he said ‘ok, bye’ and HE BLEW HER A KISS and I nearly nearly cried. Obvs because it was cute and I was proud but also because I was little bit jel.
We watched a band, and we went on the merry go round. We also spent a lot of time talking about boats and bridges. I say talking, I mean I spoke to him about boats and bridges. And he would nod every so often.
Also I stole one of his crisps and he said, ‘hey! Spit it out!’ Which was MAD because I had never heard him say that.
So this was a curve ball.
Sonny had never been to a cinema before, but I was feeling brave last Sunday so thought we would give it a whirl!
The Odeon were screening Shaun the Sheep on Sunday especially for those with autism. The lights aren’t fully down, the sound isn’t as loud, and there are no trailers before the film.
As soon as I opened the door to the screen we were in, he pulled me back out. I suddenly realised that I was trying to drag him into essentially what was just a massive dark room and he had literally no idea what was about to happen. As we were a bit early, the film hadn’t started. After a tug of war that lasted about 5 minutes I managed to get him into the room. We sat down at the front. There was a period of about 10 minutes that was fairly traumatic. He threw a water bottle, he was crying and kept saying ‘go home’ ‘it’s home time’. There was another child with autism with his parents in the back row, but other than that it was empty. I was trying to tell him we just needed to wait for a few more minutes but he really was NOT happy. It was so refreshing though to be somewhere that it didn’t matter if we were causing a scene. I mean we usually do cause a scene wherever we are, but I didn’t feel remotely weird about it, as the only other people present knew what was happening.
When the film came on I thought Sonny was going to jump out of his skin. Instantly the tears stopped and he had a huge smile on his face. It was the best hour and a half EVER. He was laughing and clapping and when one of the sheep was upset he signed ‘sad’ and said, ‘oh no’. He went right up to the screen at one point with his fingers in his ears and stared at it. He ran around a bit but mostly sat in his chair and LOVED IT.
This video isn’t very good quality but hopefully you get the idea!
I thought he might get frustrated that he didn’t have a remote so he couldn’t rewind certain parts (this is what he does at home) but he didn’t at all. It was absolutely fab.
Occasionally the other child would shout a random word, and when Sonny was making noises and flapping his hands on the chair in front, myself and the mother looked at each other and smiled. There was no judgement or embarrassment or awkwardness.
It was so refreshing to be in a public space with Sonny and feel that he is utterly free to be himself, instead of having to conform in some way: to be stared at when he is flapping his hands or making noises or climbing all over me or lying on the floor.
He has two front teeth! I have known him three and a half years and he has never had front teeth and now he does! One is a bit longer than the other, but, if anyone can pull it off, Sonny can. He looks brilliant.
I took Sonny to soft play today (the classic) and had a blast.
We kept on having water breaks every 10 minutes. Soft play basically consists of me chasing Sonny pretending I am going to eat him. Oh and then when I do catch him I smell his feet. And he finds it absolutely hilarious and gets me to do the same smelly feet joke about 15 times in a row.
He spent a long time lying down putting his hands in my eyes/up my nose/ round my mouth.
After soft play we found some escalators and spent about half an hour on those. Sonny loves repeating things over and over again, and still seems to get the same enjoyment from the 100th time as he did the first.
Not so much for me. So I started to pretend I was scared of heights and every time we were going up he had to help me. He did the first time, then found it was way more hilarious to try and push me over the side.
Walking home he kept saying, ‘racing…on your marks, get set, GO!’ He won every time.
Anyway we laughed loads. And looked at our teeth a lot.
Haven’t seen Sonny in weeks.
MISS HIM LIKE MAD.
So here are some random ramblings…
Occasionally, Sonny has a meltdown when we are out, only when something is really bad, (like its really crowded, or the pool is shut etc) but when it does happen, and he is crying and screaming and hitting, that is when I really see Sonny’s autism. In every day life when we are mincing around a museum or cutting about a soft play centre, I just see a little boy.
An able, clever, considerate and hilarious little boy. I know he has autism and ADHD and I realise that it is a disability, but first and foremost he is a child. All I see when I am with him is his ability to do new things I couldn’t have imagined he would ever do when I first met him.
He has shown me he can say my name, he can say he is hungry, he can share food, he can show empathy and express love, he has a wicked sense of humour and likes to be tickled. When I met him three years ago he would barely look at me.
I guess it is about what you choose to see in someone. I could choose to see that he can’t yet tie his shoe laces or explain to me why he will try to put a daddy long legs in his mouth but not a piece of apple.
What I am trying to say (very incoherently) is sometimes it seems to me that it is what we choose to see in someone that can define them. If I defined Sonny by all the things he can’t do, it would be that view, that would be disabling him, not his autism.
If someone defined me by everything that I couldn’t do, or that I have done wrong, then I would be friendless, jobless and homeless probs.
I promise I will never define you by what you cannot do.
I promise I’ll never disable you.
Oh and I promise I’ll never stop loving you!
A video of Sonny talking and singing.