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.

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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!

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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.

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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.

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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.

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Sonny’s First Trip to the Cinema

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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.

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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.

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You are SO able!

IMG_4886Haven’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.

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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!

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Flap Away My Son!

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‘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.

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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.

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

Double Trouble.

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Have I ever mentioned that Sonny has a twin?

Danny is on the left, and he also has autism. Yep. When they hold hands it’s like my brain can’t handle the cuteness level and I need to look away because otherwise my head will explode.

Their Dad and I took them both swimming on Sunday.

 Sonny spent most of the time underwater, but they both absolutely loved playing with their Dad (he is much better at throwing them in the water. I need to get to the gym!)

It is so lovely to see how happy they are when they are with their Dad in the pool, and it is so lovely to see parents who are so involved and accepting of their children.

Sonny and Danny’s parents always seem positive and happy and loving with their sons. Having two obviously means there can be a lot of challenging behaviour at home, but they take it in their stride. I haven’t once heard them complain about Sonny or Danny’s autism, and how it effects their lives. I know it must be difficult for them, but their love for their sons means they don’t dwell on the hard times, they just focus on the positives. They love them both unconditionally for who they are and try to understand and help as much as they can, without trying to ‘fix’ them or change them.

I look up to them both, and I admire their strength to be so accepting and loving, despite the struggles they face.

Basically they are both ace.

 

Sonny Knows The Alphabet!

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Sonny had one of his best days ever today! I think because we hadn’t seen each other for two weeks he was looking forward to going out more than usual!

He gave me loads of hugs and kisses all day, and even when I said, ‘Sonny we are just going to pop into the shop to get some water before we get on the train’ which usually would stress him out, he was so casual and calm about it, and helped me give the money to the man at the till.

Sonny played a game in the soft play centre, getting the balls from the ball pit up to the top of the slide, then watching the balls go down the slide and then repeating this process about 20 times. (A woman who worked there told him off for moving all the balls, but I spoke to her and said as he isn’t bothering anyone, and getting a huge amount of joy from his game, would it be ok if he carried on?! She was fine about it once she found out he has autism.) It was really funny watching him trying to climb up ladders with his hands full!

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Then he surprised me by showing me he could say the alphabet! (Click here to see.) Well, he needs a bit more practice, but it is a good start! My favourite bit is when he says ‘W’. He just bowled over to the alphabet puzzle and said it without being prompted or asked to…I was so chuffed that I had my phone on me to video it because I asked him to do it again afterwards and he straight up refused.

Anyway, I was really proud of him today. he played really nicely with the other children in the soft play centre too,  and considering it was really noisy and busy he did well not to get stressed.

YES SONNY.

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Miss You Son!

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I didn’t get to see Sonny last weekend, as he was ill! (But according to his mum, he was asking for me on Sunday, which pretty much broke my heart.)

But not seeing him has made me realise just how much he means to me. I miss him so much!

Whenever I tell people what I do, one of the things they say is, ‘oh that must be really hard, what a selfless job!’ It is hard, as most jobs are, but it is definitely not selfless.

I get so much out of seeing Sonny, and when I don’t see him (like this last weekend) I really feel like I have missed out. If anything, I have a selfish need to see him. He makes me laugh like no other, he teaches me like no other, and we get to do cool stuff and mince around London together.

I think its fair to say I am attached to that small little man of little words, and I think its fair to say he is attached to me. To have a trusting relationship with another is so important to growth and development for children, especially those with developmental difficulties, like Sonny. But I suppose in terms of working with children, it can be bad for the child to get too attached, because they can come to depend too much on the adult. And what if that adult doesn’t work with them anymore? In a school setting I agree with this, as it can really affect a child’s development if that attachment is disrupted or broken. But with Sonny, I kind of feel like he is a younger brother I get to see every weekend.

And I imagine I will be in his life forever now (If his parents allow it!) Well, or until he’s had enough of me, (which I hope will never happen!)

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He Didn’t Do That On Purpose…!

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Last week, Sonny fell asleep on the way to the funfair. This did not bode well. However, when we got there it was pretty clear it was going to be a good day. I mean, I was pretty excited. Nothing gets me going more than a good bouncy castle and some candy floss. (Bouncy castle was hard to manage. I completely face-planted and consequently emptied the entire contents of my bag onto the floor. Serves me right though, I was trying to show off.)

I also got the pleasure of watching Sonny get put inside a life size inflatable ball that was floating on water. Effectively a massive hamster wheel. Twice. It was great. (Click here to see).

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I had a minor incident involving a parent on the huge inflatable slide. Sonny was climbing up the side ladder, but was struggling, and kept falling down. He thought this was hilarious. But then, other children came up behind him, so he was accidently barged one child as he fell. The child got upset at this and so I said, ‘Sonny come down now, it’s a bit too busy there.’ And was just about to explain to him what had happened and speak to the upset child.

Then the child’s mother came next to me and said, to her child, but very loudly, ‘Get down from there away from that mean boy, the one in the white hoodie, he’s doing it on purpose, he’s laughing so come away from him now.’

INSTANT RAGE descended upon me. I turned around and said as politely as I could manage, ‘he has autism and ADHD, he is NOT doing it on purpose.’ She flummoxed and said, ‘oh I didn’t know…’ and then Sonny had come down so I took him off to get his shoes on, while I tried to control myself

Afterwards I felt bad, because it must have looked like Sonny did barge the other child on purpose because he was laughing. But he didn’t understand what he had done wrong. And she genuinely didn’t know he has autism, and how could she have? He doesn’t wear a sign saying, I have autism so excuse any anti-social behaviour. I would never use his autism as an excuse anyway, and I feel like situations such as this one is a good way of learning about empathy and how to engage with other children in an appropriate way.

So if I hadn’t of been so angry, and if she hadn’t of said the word, ‘mean’ I would have explained to Sonny and gone over to the other child and asked Sonny to say, ‘sorry’ but meanwhile talking about it being an accident etc. And Sonny would have learned something and I could have spoken to the mother about autism and it would have been a good experience for all. But because I was so enraged by the whole saga I had to leave, to avoid getting upset and saying something offensive!

So I was both annoyed at the lady for making me angry and annoyed at myself for getting angry. Grr.

The thought of someone saying Sonny (or any child in fact, with or without autism) was ‘mean’ really got to me. All the different ways in which Sonny shows his kindness and affection is unconventional but is no less than any child without autism. I know she wasn’t aware he had autism, but that just really upset me!

Lesson learned- people will misunderstand. It’s my job not to take it personally when they do, but to use those moments as ways of engaging others in conversations about autism. So I’ll take a leaf out of Sonny’s book. I’ll be stronger.

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He fell asleep on the way back too. He didn’t even wake up for my duet of a Spice Girls Medley with this guy on the tube.