Why Are We So Adultish?

FullSizeRender-2 FullSizeRender FullSizeRender-1

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.

 images

When I feel like a failure

IMG_6395 IMG_7451 IMG_7530

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.

 images-1

#sorrynotsorry

IMG_5653

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.

IMG_5738

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.

IMG_0002 IMG_0005 download-2

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.

 IMG_0003 IMG_0008

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.

IMG_5872

Son and Mum have a thing going on…

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.

image4 image1 image2 image3

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.

Sonny Blew a Kiss!

IMG_5625

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.

IMG_5647

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.

IMG_5628

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.

 IMG_5635IMG_5652IMG_5663

 IMG_5657

Two Front Teeth!

IMG_5454 IMG_5464

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.

IMG_5460

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.

IMG_5468

Flap Away My Son!

photo 1photo 2

‘Stimming’ is a term used to describe self-stimulatory behaviours.

Basically it is a repetitive behaviour that feels good.

Children with autism stim in a variety of different ways. It may be rocking, spinning, shaking their head, flapping their hands, repeating a sound or word etc.

For Sonny, he flaps his hands on his head, his leg, my head, my leg, a random chair, a pineapple, anything that is in reach. He loves it. Can’t get enough of it. Click here to see it (quite bad quality though!)

He sometimes stims when he really likes something (watching something on his iPad) but mostly when he is distressed (when I ask him to put his shoes on his own). So I kind of see it as him expressing emotions he can’t articulate through words- loads of happiness and excitement or loads of frustration and anger. It helps him when he is trying to manage his feelings of anxiety, fear or when there is too much sensory input (too hot, too light etc).

Some people think that stimming should be eliminated or modified. I am not those people. I believe that if it doesn’t hurt anyone else or himself he should flap, flap and keep on flapping. If it makes him feel good then I say crack on. Why should he adapt and change who he is just because it might seem a bit odd or different? When we are mincing around London and he flaps he does gets some funny looks (which we both completely ignore) but I never tell him to stop. I did once try and do it with him when he was half way through an intense flapping session just to see what he did. He stopped and looked at me quite disapprovingly, walked away from the crazy lady who looks after him and continued.

photo 5 photo 4 photo 3

We all have different ways of calming ourselves down to some degree, sometimes without realising we are doing it. People who bite their nails, pace up and down, shake their leg, tap a pencil etc, they are all repetitive behaviours that in some way are calming or soothing. Most of us stim, autistic or not, it is just that some are more accepted by society I guess.

122541-keep-calm-and-stim-on-gallery

My stim? I play with my hair all the time. Well, not when I play ping pong. But a lot of the time.

Cheap Fun Is Good Fun

photo 2 photo 1

Sonny is a man of simple pleasures.

I have noticed he finds happiness in the smallest or strangest of things.

Recently, he has been asking to go into supermarkets. (Click here to see) When we go in he makes a bee line for the DVD section. We can spend a good 20 minutes in there. He walks up and down the aisles reallllyyyy slowly. Maybe one will take his fancy. He will pick it up, look at it for about a minute and then put it on the floor. And carry on in the same manner. Eventually he chooses something fairly inappropriate (he loves a film rated 15 apparently) and gives it to me. I usually have to employ some distraction tactics to move him on without getting upset he hasn’t managed to take Prometheus home. We then mince on over to the fruit and veg section, where we talk about the colour of grapes, bananas, apples etc.

photo

Last Sunday we ended up spending about half an hour sitting in a park getting very involved with a pack of balloons (click here) I had in my bag, along with various toys from Macdonald’s happy meals, bubble wrap, hand sanitizer, random bits of fluff, you know, the usual stuff a girl in her mid twenties carries with her. He said all the colours (confused between pink and red, but whatevs) and then tried to blow up all 4 balloons at the same time.

Every time I see Sonny I have some activity or outing planned, like a city farm/soft play etc, but sometimes he likes staring at DVDs. Sometimes he likes watching the taps run in the toilets. Sometimes he likes lying on the floor with his head in his hands.

photo 2

If At First You Don’t Succeed…

photo 3

It took about a year and half to get Sonny to say, ‘I want help please,’ using hand signs and words. He has become good at it now, but often uses it as a get clause when he can’t be bothered. Clever.

So you can imagine my surprise in a soft play centre the other day, when I was at the top of the slide and Sonny was trying really hard to climb up it (he had socks on). He tried and tried for about 10 minutes. He wasn’t really getting angry when he failed, just kept trying different ways until he eventually made it to the top. I felt a little bit mean videoing him from the top and not helping him out (Here’s the vid.)

Anything he does independently is a massive deal (he opened a crisp packet on his own the other day and I nearly passed out with excitement.) We have devised a sort of victory dance (it involves a sequence of very enthusiastic high fives, jumping, and shrill screaming) to celebrate anything he does on his own, which he seems to like!

I don’t want him to grow up thinking he can’t do something, just because he didn’t try, or because someone else did it for him.

I learnt how to ride a bike at the ripe old age of 19. I made a vague attempt when I was younger but couldn’t commit to the process. I gave up fairly quickly (never have been good with failure) and ever since just accepted the fact that I simply couldn’t do it. The only reason I can ride a bike now (only just, corners are an issue) is because I had some strong-willed friends at University.

Sonny needs more support than neuro-typical children obviously, but I want him to be able to ask for help in some situations, where he needs it, but I also want him to learn that when he puts his mind to something he can achieve it.

Who doesn’t love a trier, anyway?

photo 1 photo 2photo