Thank You, You Legends.

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I have been overwhelmed by the amount of love and support Sonny and I have received since starting this blog. It has been made more apparent this week, as last Sunday I ran the London Marathon for the National Autistic Society. I just wanted to say a huge massive gargantuan THANK YOU to everyone who sponsored me. I cannot believe that through the JustGiving page we have raised over £3000 for such a great charity that is so close to my heart. You have all been so generous, not only in your donations but also in your words. The amount of good luck texts and messages and voicemails I received was amazing! So I know this doesn’t really cut it, but thank you thank you thank you thank you.

The whole day was very emosh (I cried three times before I got to the start line) and I definitely overestimated how high my pain threshold is. I cried numerous times on the way round in agony! But it was an incredible experience (apart from a very tragic experience at the beginning involving a ‘she-wee.’) and Sonny and his parents came and met me and my family and friends at a pub afterwards. Seeing him definitely made the pain worth it! He was a little confused by the whole affair but he gave me a lovely balloon to say congratulations!

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In the 4 hours and 41 minutes I took to run it, I thought of all the challenges that Sonny faces every day. Running a marathon seemed like nothing in comparison.

To me, he is an inspiration. He experiences a world that others don’t understand. He experiences feelings he finds hard to express. And yet he still finds light in every day: laughs when I sneeze, runs and scares pigeons which he finds hilarious, and learns new words every day.

What a wonder.

And what a treat that I get to spend so much time with him!

Thank you again, for your generosity and kindness!

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How Well Can You Know Someone With Limited Speech?

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Sonny can’t tell me why he gets upset. He confuses me when he bursts into laughter for no apparent reason, or is adamant that we go left instead of right. I don’t know his favourite colour or what he dreams about. I don’t really know how much he understands. However I feel I know him better than a lot of people in my life who are very much able to talk to me. And I kind of think he knows me better than most too.

Sonny and I, we experience a lot together. We experience a lot of feelings together. He can experience the extremes of anger or fear when he is confused or anxious. Not only his- but my emotions too- when he does something dangerous or turns an inanimate object into a weapon when we are out I show him I am angry so he doesn’t do it again. But I hardly ever shout. I just say how I am feeling in a calm way, which works a lot better for Sonny. He usually says sorry and kisses my hand. (What a charmer.)

In the last month or so he has started to use his words to tell me how he feels (on Sunday he said ‘Sonny is sad’ when we had to queue for ages at the swimming pool, and, ‘Sonny is happy’ when we were eating Mcdonalds. He has also been saying, ‘calm’ when he starts to gets stressed and takes some deep breaths (click here to see) and that actually works to calm him down.

Anyway what I am trying to get at is that we have a lot of feelings to deal with.

It is emotional work for both of us. And in a few relationships I have in my life we can talk and talk and talk but without really saying or expressing that much to the other. Sonny and I use a lot less words but say and express masses. And we listen and respond to those feelings.

Everything we feel, we express.

Everything that is expressed, is heard.

That is how we know each other.

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He’s Growing Up So Fast!

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Sonny is saying words now that I had no idea he could say.

I decided to take my boy to Regent’s Park as it was such a lovely day outside.

We were having a blast on the climbing frame when something monumentally awesome happened.

He turned to me and started saying something, it took me about 5 minutes to work out what it was, I asked him to sign it, to repeat it like a hundred times. Until the penny dropped and I realised he was saying, ‘animals’. I don’t know whether it was because we had seen animals at Battersea Park last week, or he remembered somehow that Regent’s Park has a zoo in it, but it was then that I realised I had a little GENIUS on my hands.

It took me a while to stop freaking out (just to make sure we were on the same page I got my phone out and showed him some pictures of the zoo and said, is this where you want to go? Are you sure? The zoo? With the animals?) He started getting annoyed after saying yes for the fifth time.

And so an impromptu trip to the zoo was had.

Sonny took control of the map (probably because he now used to my shocking sense of direction!)

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Sonny has developed an unexplainable but fierce interest in penguins. We set up camp by them and watched them swimming for ages. When I eventually got him to come with me to look somewhere else he kept saying, ‘penguins’ paired with a little jig (click here to see!)

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Off we trotted back to the penguins! We went and played on the climbing frame for a while and also saw the butterfly enclosure bit (which I hate. I was petrified of them getting in my mouth, Sonny was intent on trying to grab them by the wings. Stressful.) But he seemed to really enjoy his sunny day (on my Sonny day!)

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I am so proud of how far Sonny has come in the last few months, I can’t believe his progress! I will cherish all these moments while he is young, they won’t last long I am sure! As much as I am thrilled that he is doing so well in his development, I am also a little tiny bit sad he is growing up so fast…

His feet are nearly as big as mine!

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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

Any Excuse To Dress Up!

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‘rech buch eighty –dooo yayyy!!!’ Sonny said as we left his house. (Translation: lets get on the red bus, number 82 yay!) We often get the number 82 from his house so now he thinks every time we go somewhere that’s the bus we will get on! This time he was actually right (again.)

We went to the zoo today! He got a bit frustrated when we got there as we had to wait quite a while, but we sat down and had lunch and he calmed down.

He loved the penguins, we were there for half an hour and he kept pointing to them and cracking up at them swimming. Unfortunetly he then pointed to the butterfly house, where there are quite literally hundreds of butterflies flying around in a small confined area. This is basically my worst nightmare, I freak out that they might fly in my mouth or get in my eyes or something, so I was screaming and trying to hide behind Sonny who was trying to CATCH them with his HANDS. We managed to stay there for about 20 seconds, by which point I was on the verge of tears because I was so petrified. And no butterflies were harmed by Sonny.

Then we got DRESSED UP in some onesies and ran around for a bit. On the bus back we had a pretty decent conversation:

Me: Son, what does a tiger say?

Sonny: Roaarr

Me: A crocodile?

Sonny: Snap snap

Me: What about a monkey?

Sonny: Oo oo ah ah

(I asked him what noise a pig and horse make but he wasn’t too sure about those)

Me: Dog?

Sonny: Woof woof

Me: Cat?

Sonny: Meooww

Me: Cow?

Sonny: Shhhh. (put his hand over my mouth. Evidently he had had enough by that point.)

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But anyway I was really surprised that he knew the noises the animals made! I obviously spoke loads to him while we were at the zoo about what animals there were and the noises they make, but its quite hard to tell how much he actually takes in.

We got quite a few odd looks when we were walking around in our costumes, but Sonny enjoyed himself which is all that matters!

Happy Friday!

xxx

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