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.

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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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Sonny Says Sentences!

 

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Sonny’s mum text me in the week telling me that Sonny had said his first full sentence, without being prompted.

It was, ‘I want toast please.’

Apparently he just bowled into the living room and just said it casually like it was no big deal.

What an absolute legend.

When I took him out this weekend (we went to Coram’s fields in Russell Square, which is a playground with climbing frames etc) he said loads of sentences like, ‘I want bus please’, ‘I want soft play please,’ and ‘I want go home please’. Though not entirely grammatically correct, true, in my book a sentence is a sentence.

Obviously my first instinct was to freak out, throw him in the air and scream, ‘OHMYGOD SONNY that is amazing you said a sentence you are so clever I am so proud, WWOOOOHOOO,’ etc, and then to break down in tears of pride. But I managed to reign it in and keep relatively calm and said, ‘oh good talking Sonny!’

Moments like that, when he does something new and unexpected, that myself and his family and teachers have all been working on, are the most precious moments, because it makes all the difficult times and struggles worthwhile.

That is one of the best things about Sonny. He always shocks me with new things he says and does, and it never fails to blow my mind.

It may not sound like a big achievement, but is a HUGE milestone in his development, it’s like the equivalent of someone learning to drive for 3 or 4 years and then nailing a three-point turn for the first time. I couldn’t imagine Sonny talking at all when I first started working with him…to be honest I was unsure weather he ever would. He was frustrated and angry a lot of the time, partly due to the fact he was unable to communicate his needs. But I could barely shut him up this weekend. It was quite frankly bloody brilliant.

Working with children with special needs, it can sometimes feel like you are fighting a losing battle, bound to not succeed, and then you see the child do something for the first time and it makes all your hard work worthwhile.  

WELL DONE SONNY.

(Below: I think he has been spending too much time with me…His pout is starting to be better than mine.)  

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Aaaand finally, click here and here for some videos of Sonny busting a groove.  

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!

He Loves Me!

Yesterday was boxing day and Sonny and I spent it at his house, as his parents were very brave and hit the sales!

His parents came back home with a MacDonalds and a fruit shoot for him, and we were just sitting on the sofa, and randomly he leant over and put the fruit shoot in my mouth to drink.  I know it doesn’t sound ground breaking or anything, but it shows he can help others, without any personal gain. Sharing can be difficult for any child,  so for him to share his drink (and he LOVES fruit shoots) was fan-bloody-tastic.

And also the other day Sonny and I were on the way home from somewhere, and he did something else that showed me he could express love and kindness for another. He often covers his ears up with his hands as he is quite sensitive to noise (this is quite common in children with autism) and we were waiting for a tube. As the tube came into the platform, he got my hands with his and put them over my ears and said ‘eaassh’ So in a small way he was trying to look after me by telling me to cover my ears when the tube came past. Sonny was showing empathy and love, but not for any personal gain, not in return for anything, but just because.

He does understand the whole ‘You scratch my back I scratch yours’ concept. He often will swap you a toy in order to get the one he wants from you, or he will kiss me when he wants something, but these two random acts of kindness were different. They were totally unprompted and had no personal gain for him and that is massive progress for Sonny. I understand that sharing his drink and covering my ears doesn’t sound like a big deal to some, but it made me SO HAPPY to see him care for someone else (future husband, take note.)

So basically what I am trying to say is that the most important thing is the relationship and bond we have with a child. Taking him out to lots of different places is great for his education and speech development etc, but by showing him unconditional love he has started to show compassion and selflessness for other people, which can sometimes be difficult even for us non autistic adult folk.

In the spirit of love, here is a video of me singing to Sonny, (you may want to turn the volume down for this one.)

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My favourite Christmas present this year was my new t-shirt from Sonny’s parents, they bought it for me so I could wear it when I run the marathon for the National Autistic Society. Click here to see my JustGiving page!

 

Soft Play on a Rainy Day

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Sonny was in such a good mood when I told him we were going to soft play (which is basically an indoor climbing/play area). Despite the rain and gale force winds, we set off to the bus stop in high spirits. Until I took us on the wrong bus. Going in the wrong direction.

Good start.

When we finally got back on track, we had to change buses. It just so happened we walked past a Macdonalds. Sonny tugged at my arm and pointed and said ‘Macdodods!’ I said, ‘yes Sonny lets get a macdonalds then before we go to soft play.’ We get to the front door, him excited about some fish fingers and me about getting a coffee. And just our luck it was closed because of a power cut.

WOW.

It was traumatic. Shoes were off. A fruit shoot bottle was thrown (thankfully not injuring anyone). Did I mention it was raining?  Oh and a random passer by thought that it was an appropriate time to approach me and ask where my bag was from.

When he has a meltdown like this I try to explain as much as I can, and tell him what is going to happen next ‘Sonny I know its really confusing because I said we could have a Macdonalds and now we can’t, and that must be difficult for you and you seem very cross, and I am sorry! Let’s put your shoes back on and get on another bus to the soft play centre.’ And then, luckily, my distraction tactics worked a treat: I made him laugh by pretending to hit my head on a lamppost.

After our minor blip we had an absolute blast in soft play. I sometimes think I enjoy it more than him! It basically involves a lot of me chasing after him and then catching him, tickling him until he is blue in the face, and then letting him run off again. I was pretending to be a hungry monster wanting to eat him for dinner. Which he finds absolutely hilarious.Making him laugh is honestly one of my greatest pleasures in life!

He did some really good talking and signing too! Click here to see! He has only really started to talk in the last six months or so, I’m so proud!

Even though Sonny got upset about the Macdonalds saga, we still managed to have a really fun day. It just goes to show that no matter how prepared you are, there are some things out of our control: sometimes Macdonalds will be shut and sometimes it will be raining. But we were able to recover from that moment, and adapt to the situation. Being resilient in the face of a set back isn’t always easy, but we managed to put it behind us and enjoy the rest of the day together.

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Sonny and I wish you all a very merry Christmas and a happy new year!