If At First You Don’t Succeed…

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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?

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Don’t Touch The Pigeons!

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‘Don’t touch the pigeons Sonny, just say hello!’ That is what I spent most of yesterday saying.

He has a very strong desire to scare pigeons. Running through a crowd of pigeons and reaching out to touch them. Meanwhile I am trying not to scream, holding on to his hand with my vice-like grip with one hand, and with the other shielding my face from the birds that are now airborne trying to get away from Sonny (click here). However, bird dodging aside, we had a lovely day in Hyde park yesterday!

We did a lot of walking and talking. We talked about what colours we could see, how many birds there were, etc. I also did a lot of singing, which Sonny wasn’t too impressed by. I also got a bit carried away with the camera phone, and did a slow mo video. I think there may be many more of those to come!

Lovely Sunny Day with my Lovely Sonny Boy.

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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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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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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