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.

 

I’m Just Trying To Work Out How To Be Like Myself!

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 Sonny and I do weird stuff when we are out.

Sometimes we stand and watch water run from taps for a while after the toilet.

Sometimes we walk for 15 minutes in the wrong direction because Sonny is adamant it is the correct way, despite me showing him the map on my phone.

Sometimes we go up and down in a lift countless times.

These are all Sonny’s ideas, not mine! But when I take him out into the real world I am aware of how difficult it can be for Sonny.

Too much noise, too many people, too hot, too cold, too much space, too little space, etc. So sometimes even though it’s a bit unconventional, I allow him to do what he wants/needs to do on our days out to make him more comfortable, even if it does seem a little bit odd.

For example, we were at Battersea Park Zoo on Sunday, and it was really sunny and we saw all the animals and then went on the climbing frames outside for a while which was lovely. Then as we were on our way out, we went through the zoo’s shop. Some toy snakes caught Sonny’s attention. We sat on the floor and played with them for about half an hour. Sonny especially liked it when I made one of the snakes try to eat him. And then he got very involved with counting them (once he had asked me to put them all around his arms).

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Sometimes it is quite hard to not have an agenda of my own for the days out with Sonny, like I REALLY wanted to go outside and have a picnic, (when is there ever sun in March in England!?) instead of playing with snakes inside in the shop! But I wanted to let Sonny do what he needed to first, and then we went outside after. So I try not to interrupt these moments when he gets immersed in something that I wouldn’t even bat an eyelid to. After all, he is just learning about what he likes and doesn’t like. And I am just trying to understand that and understand him.

I remember working with him at school and obviously in that context there were many times he had to adapt to what the adults wanted him to do. But on the weekends and the time I spend with him, I think it is important for him to know he can use it in whichever way HE feels appropriate (to an extent. I would not accept him running around Battersea Park butt naked and stealing people’s food for example.) Because I think a lot of his frustration/anger/fear comes from not feeling in control. And to be fair I get pretty upset when I don’t feel in control.

And if people are constantly telling him what to do and how to play and what is good and what is bad he won’t work it out for himself and won’t know what he likes and doesn’t like. So basically I just try and allow him to be as much as himself as possible.

Often in his life he is made to adapt to our world and all the norms and social etiquettes that come with it, like putting clothes on, or looking at people in the eyes, or being told when he has to eat or to hold an adult’s hand etc. So I value the times when I can step into his world, when he shows me a little bit of what is going on in his busy brain. I feel like I know him better somehow after these moments. I feel like he knows himself better too.

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Big Steps For Sonny At The Science Museum!

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Sonny and I went to the Science Museum this weekend, which was absolutely amazing! , and there was a massive place for water play too, it was quite busy, but Sonny didn’t seem to mind! We spent a long time looking at the aeroplanes, and we also watched a bubble show where they showed us loads of huge bubbles, Sonny got a bit annoyed though because there were lots of other children there, and it was too loud! He also loved all the things that lit up and flashed bright colours.

Sonny got a bit frustrated when we were queueing to watch the bubble show (his autism means he finds it difficult to wait for things that he wants.) He frequently gets cross when he has to wait for something, and if he doesn’t calm down quickly he gets more and more angry which can lead to him getting violent or running away.

I find it hard to know what to do when he gets frustrated: I don’t want him to think he shouldn’t ever get angry (because we all get angry sometimes!) but I also don’t want him to think he can get away with bad behaviour just because he is annoyed.

ANYWAY, a few weeks ago I tried something new when I could see he was on the edge…I said, ‘Sonny I know you are cross, and that’s ok, but lets do some deep breaths together and stay caaalllllm.’ The first few times I said all this he looked at me like I had totally lost the plot, and seemed really confused, but at the museum, when he started getting angry, I said, ‘Sonny I know you are cross, but…’

AND THEN he did some deep breaths and did the hand sign and said, ‘caaaallmmm.’ ALL BY HIMSELF!

I was super chuffed. It shows he has an awareness of how to change his mood, and to self soothe when he is cross (which, to be honest, lots of adults struggle to do!)

When we left the museum he started to get upset and say, ‘goodbye, see you soon’ while crying and waving. I asked him if he was happy or sad and he said sad with the Makaton sign. Then later on the bus when I was tickling him and making him laugh I asked him the same  and he said happy. A few months ago when I asked him that question he would always say happy, regardless of whether he was crying his heart out or laughing his head off.

Understanding emotions is hard for children with autism, and they often feel very intense emotions, that are difficult to control, so I am thrilled that Sonny is starting to understand his feelings and how to manage them. I suppose what we all want for our children is to be happy, but I think happiness is about being able to freely express ourselves and our feelings at any given time. I think Sonny is on his way!

If someone had told me two and half years ago that Sonny would be able to tell me how he felt and then also calm himself down when he is stressed I would of not believed them, it has taken a long time to get to where he is today, but days like this make it all worth it.

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He Struggles With Words, But He Can Roar!

A video showing some of the best bits over the last few months on our days out together around London…What fun we have had!

I am running the marathon for the National Autistic Society, which is a charity that supports children like Sonny and their families. The link is below if you would like to help me raise some money for a brilliant cause:

https://www.justgiving.com/Melanthe-Grand1/

I am so grateful to have Sonny in my life. I learn from him every day. I have had many teachers, but Sonny is by far the best.

So thank you Sonny for all the great days I have had with you…I look forward to many more.

xxx

‘I’m Sorry!’ ‘No, I’m Sorry!’

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As it is half term I have been taking Sonny out during the week, so yesterday we went to a soft play centre in Kentish Town and then went for a (very long) walk up to Primrose Hill and through Camden Town.

He was being so chatty!

When we were walking up the hill (very slowly) he was saying ‘up, up, up!’ and when we were up on the top of the Hill Sonny said ‘cold’ and did the sign for it. And then when we were walking back down the hill he stopped to point and count 6 big buildings that he could see! (Click here to see a vid.)

In soft play we invented a new a game that involved me pretending to fall asleep and snore really loudly and then scare the living day lights out of him. (Click here to watch!) He then started to walk up to me (while I was fake sleeping) and shout ‘boo!’ in my ear! The game came to an abrupt end though when he took a running two-footed jump onto my tummy. I was pretty sure he cracked a rib, but I was just winded. Had to have 5 minutes break while I regained my breath and composure.

Apart from said injury and a minor fall out about which direction the bus stop was (turned out he was actually right. When I tried to apologise to him and say, ‘I’m sorry,’ he  kept on repeating it back to me saying, ‘I’m sorry.’ ‘No Sonny I am sorry, not you, I am sorry, I was wrong!’ I said. I am not sure he understood because he replied again with, ‘I’m sorry.’ And so on. If only all men were so quick to apologise!) we had  a lovely day and it didn’t rain! Win.

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With Love Comes Worry

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‘WOOOWWW’ Sonny said when we walked into the HUGE soft play centre I had chosen to go to.

It had a massive climbing frame in the middle,a bumper car area and a tea cup ride. And it was absolutely heaving.

Sonny was obviously in heaven and wanted to get involved as soon as poss, whereas I was feeling a rising sense of panic about the whole situation…because it was such a big place and it was so busy I was a bit nervy.

I explained to him that he had to be slow, and not run off because I needed to make sure he was safe. Which he didn’t really understand. And then I thought that is really unfair because of course he wants to run around and explore without holding my hand the whole time. So basically I had to just keep up with him.

Which was a challenge. He is surprisingly fast.

And unfortunately these soft play areas are not made for adult sized humans. Trying to shove my body through two huge rolling barrels, crawling through tiny tunnels, clambering over things and scrambling around in a ball pit without knocking out any small children who happen to be in the way is a challenge in itself, let alone when I have to do all this at Sonny’s pace so that he doesn’t leave my eyesight.

It was not a pretty sight. However it was a very good work out!

This reminded me of when I was younger getting annoyed at my mum being really panicked when we would go anywhere, ‘Only go where I can see you kids, I mean it!’

Only now can I appreciate her terror when she would take my brother and I out…If she couldn’t see us for more than 20 seconds she would pretty much be in tears and on the verge of a nervous breakdown/shouting our names at the top of her voice/calling the police. (To be fair, she still hasn’t got over it, at the ripe old age of 24  I can still induce a cardiac arrest if I don’t answer the phone to her. She automatically goes straight to the worst case scenario and thinks I must have fallen in a ditch or got run over by a bus and died.)

But now I can totally relate to that feeling, not that Sonny ever left my sight, but even just the thought of it was enough to make me petrified! Sonny is known in his family as Bear Grylls because of his lack of fear..he has not concept of danger, which is quite normal for children with autism, I worry about his safety a lot!

So apologies mum, for all those stressful moments we put you through!

It made me realise that it is so important for us to allow children to explore and play as they wish to, without restricting them too much because of adult worry. To adapt to Sonny’s world by thinking, ‘right I am just going to have to keep up with him’ instead of spending the whole time trying to get him to adapt and to tell him to slow down meant that he could play freely and safely with me.

Sonny LOVED this thing and was playing with it for AGES…click here to see him flapping (he does this alot, when he likes something.)

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Click here to see us on a slide (we went down it about 46 times)

Click here to see Sonny on a tea cup ride! (apologies for my shrill laughter)

Sonny practiced his driving skills on the bumper cars!

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Aaand this was when I knew it was home time!

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To Underestimate is to Alienate

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Much to Sonny’s annoyance, I rarely underestimate his abilities.

I talk to him a lot about pretty much everything…some things he picks up (he can now cross a road and say, ‘rech ma says stoch and gree ma says GO.’

And other things I chat about probably go over his head.

I make him talk and sign as much as I can and I never do anything that he can do for himself. I feel very strongly about it because I think if I underestimated Sonny, and didn’t talk to him because he ‘wouldn’t understand’ or I never prompted him to sign or speak, then not only would I not know what he is capable of, but neither would he. Children with autism face a lot of barriers to their development and growth, and I don’t want my attitude to be another barrier for him in his learning.

This means I often challenge him, which sometimes ends in a stand-off situation, where Iwant him to do something independently, and he refuses. This weekend, it happened in the swimming pool changing rooms. I know Sonny can get dressed independently, I have seen him do it before, but today he didn’t want to. To be fair to him he was asking really nicely for help, so I helped him a little bit, but I didn’t want to do it for him because I knew that he could do it on his own. He did do it on his own, but it took literally 45 minutes.

Of course a balance needs to be made, I wouldn’t want to ask Sonny to do something on his own that he was incapable of doing, as it would reduce his confidence and could make him really frustrated.

Apart from the changing room saga, we had a lovely day, Sonny was doing LOADS of talking. He also was trying to shut me up a lot of the time!

Bikini Gate

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I didn’t get to see my man this weekend, because he has a cold (sad). So I thought I would write about a terrible but hilarious event that happened last summer while working with Sonny.  Having to relive the mortifying experience by blogging about it is going to be traumatic to say the least, but I feel compelled to share.

So Sonny absolutely loves swimming.(Here he is saying swimming pool!) He could stay in the pool for hours and hours, and only comes out of the pool if I coax him out with the promise of a Macdonalds after.  Quite simply he cannot get enough of it. I on the other hand am less of a fan, but we go often because he gets so much out of it.

We have been to this one pool a lot, it has a wave machine and some water fountains. Anyway, I usually swim in a bikini with a t-shirt over it, and that has been absolutely fine, however today the lifeguard blew his whistle and told me that I couldn’t wear the t-shirt, as it messes with the chlorine levels in the pool. I said I have worn a t-shirt in the pool before but he wasn’t having it. I was annoyed but took it off anyway, unaware of the DIAR consequences which were about to follow.

The bikini I was wearing happened to be one that ties up at the back. I had not double knotted.

Sonny and I were having a great time, he was on my back and I was pretending to nearly drop him, so we were laughing and playing and generally loving life. I then looked back at him over my shoulder (bear in mind I had no use of my hands as they were holding him up) he was looking at the knots on the bikini. In that moment I realised my fatal error. ‘SONNY NO, DON’T TOUCH THOSE….NOOO AHHHHHHH’ It was too late. In one swift movement he had not only undone the top knot of the bikini but also the bottom one. At the same time. The bikini top fell into the pool and Sonny bolted, leaving me topless and hopeless. The water came up to my thighs. There were a LOT of people there to witness this horrific event. It didn’t help that I shrieked in horror, thus attracting more attention to ourselves. I obviously ducked down as quickly as I could into the water and retrieved said bikini top.

Sonny was practically doubled over laughing. I was still topless trying to regain some sort of dignity as he was cracking up. I then had the struggle and embarrassment of trying to do up the bikini on my own, whilst making sure Sonny didn’t swim away and cause more carnage in his wake!

Note to self: buy appropriate swimwear.

 

 

A Fab Day To End A Great Year.

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Sonny and I went to an arcade place near the London Eye today.

Obviously before we got there we joined the hundreds of tourists and loved up couples in taking lots of selfies with Big Ben in the background.Big Ben

Not going to lie, it turned into a little photoshoot, Sonny is almost as good as me when it comes to posing for the camera!

So we went into the arcade and for a good 10 minutes we were on the 2p machines (those ones where you put the 2p in and it moves them all a tiny bit off the shelf). It was only when I ran out of 2ps that I realised how long we were standing there for and had basically become hypnotised by it. Dangerously addictive.

We went on the dodgems four times, once on our own, which was weird because I ended up just driving around in a circle, but I let Sonny steer for a bit, which he loved, but resulted in us both coming out of the car with mild whiplash.

Then we played some bowling for a little while. By which, I mean Sonny showed me his interesting technique of violently launching the bowling balls two at a time. It was surprisingly unsuccessful. He kept on trying to run down the alley after the balls, so due to the health and safety risks involved we made a swift exit!

Sonny was so happy all day today! Talking and pointing and dancing and generally just being really good and happy. It can get quite frustrating because sometimes I don’t know what he is saying but I try my best to work it out!

On the tube on the way back Sonny made a friend, a man who noticed his arsenal hoody! He looked confused when Sonny was ignoring him so I told him that Sonny has autism. Although when the man got off the tube he said bye to Sonny and Sonny waved and said, ‘bye! See you soon!’ CUTE.

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2013 has been such a good year for Sonny. There have been countless moments when he has done something/said something new, and I am so proud of him I could cry/faint. I am sure there will be many more, and I looking forward to sharing these moments with you in 2014! Happy New Year!