When I feel like a failure

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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.

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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.

The Unknown Potential

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I haven’t seen Sonny in a month (due to me going on holiday and then him being ill) which is the longest time I haven’t seen him for in about 2 years. Not seeing him for that long made me realise that he is such a big part of my life!

Every time I walked past a McDonalds, every time I saw the 82 bus, every time I took a shameless selfie on public transport, I had to hold back the sobs because I was reminded of how much I miss him. I was broken hearted basically.

The reunion wasn’t has I had hoped. I pretty much rugby tackled him to the floor and he told me to, ‘go away.’ He did smile though and then was very affectionate all day, so I didn’t let that get me down too much!

His speech is coming on so much! He said, ‘its rain’ (click here) and his rendition of the alphabet is really coming along! (here). He is saying other words though that I have no idea what he means by. I keep trying to get him to point or show me but he just gets frustrated.

We had a bit of a domestic while we were out (at a fair in Highgate). He took his shoe off, and then refused to put it back on. I know he can do it on his own, so we spent a good 20 minutes arguing.

Sonny often shocks me with what he knows and what he can do, but then sometimes doesn’t do the things I know he can do. Which confuses me. If someone had told me a few years ago he would be saying the alphabet or counting to 10 I wouldn’t have believed them. Yet I have seen him get dressed on his own countless times before and he sometimes won’t do it on his own.

That is why I love what I do: there is so much unknown with Sonny, what he thinks, what he feels, how much he understands. Every time he does something new its more hope for what he will become. I

I wonder what he will be like in the future. Will he be able to talk? I hope so! Will he be able to cross a road on his own? I have no idea. Will he have a job? Not a scooby.

Will he be happy?

I’ll try my damned hardest to make sure of it.

Oh and I won the shoe argument. He eventually got it on by himself!

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Clever Little Man!

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He reminded me today not to underestimate him.

It was proven today that he is in fact a genius.

We were on the bus (number 82, standard) on our way to the London Aquarium. When the bus got to a stop near Regent’s Park he said, ‘animals!’ and put his bag on and went to get off the bus, and said, ‘we did it!’

It took me a while to clock on, because if I am honest I only had the vaguest of ideas where we were (which unfortunately is the state I spend most of my time in.) I got out my trusty City Mapper App on my phone and then it became apparent. We got off at the same bus stop a few weeks ago when we last went to the zoo.

This is ridiculously clever. Firstly to remember that we were there before is something in itself, and he remembered just from looking out of the window. But also to make the association between that bus stop and the zoo was NEXT LEVEL.

Anyway, we then engaged in a very confusing conversation about how we were going to see animals today but not at the zoo. (The concept of ‘same but different’ is the hardest thing to explain!) So he got a bit upset but managed to calm himself down with his breathing and saying, ‘caaaalm,’ and that seemed to do the trick!

I am pretty much constantly in a state of mild confusion as to where I am in relation to everything else in the world. But Sonny is insanely good at remembering places that he has been to before. He also has a very good sense of direction. This is especially impressive to me, as memory/direction/general geography are definitely my weaknesses. Clever Sonny!

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Sonny loved the aquarium and watching the fish. He kept on flapping on the glass though which scared them all away! (Click here to see) I had to drag him away at the end because otherwise we would have stayed there all day!

He passed out again on the tube. Sign of a good day!

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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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Horseplay On Hampstead Heath!

Sonny and I went for a lovely day in the sun last Sunday, and played for a very long time! We ended up lying on the floor playing games. Had the best day!

This video is dedicated to the lovely and wonderful Elizna Krog (a VERY amazing special needs teacher and dear friend who I learned ALOT from.) She came to visit me at Victoria Station today where I was raising money for the National Autistic Society for World Autism Awareness Day.

I am running the London Marathon for the National Autistic Society in two weeks time! Working with Sonny is proving to be all the training I need at the moment! The link is below.

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

Happy Autism Awareness Day to all. xxx

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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