Flap Away My Son!

‘Stimming’ is a term used to describe self-stimulatory behaviours.

Basically it is a repetitive behaviour that feels good.

Children with autism stim in a variety of different ways. It may be rocking, spinning, shaking their head, flapping their hands, repeating a sound or word etc.

For Sonny, he flaps his hands on his head, his leg, my head, my leg, a random chair, a pineapple, anything that is in reach. He loves it. Can’t get enough of it. Click here to see it (quite bad quality though!)

He sometimes stims when he really likes something (watching something on his iPad) but mostly when he is distressed (when I ask him to put his shoes on his own). So I kind of see it as him expressing emotions he can’t articulate through words- loads of happiness and excitement or loads of frustration and anger. It helps him when he is trying to manage his feelings of anxiety, fear or when there is too much sensory input (too hot, too light etc).

Some people think that stimming should be eliminated or modified. I am not those people. I believe that if it doesn’t hurt anyone else or himself he should flap, flap and keep on flapping. If it makes him feel good then I say crack on. Why should he adapt and change who he is just because it might seem a bit odd or different? When we are mincing around London and he flaps he does gets some funny looks (which we both completely ignore) but I never tell him to stop. I did once try and do it with him when he was half way through an intense flapping session just to see what he did. He stopped and looked at me quite disapprovingly, walked away from the crazy lady who looks after him and continued.

We all have different ways of calming ourselves down to some degree, sometimes without realising we are doing it. People who bite their nails, pace up and down, shake their leg, tap a pencil etc, they are all repetitive behaviours that in some way are calming or soothing. Most of us stim, autistic or not, it is just that some are more accepted by society I guess.

My stim? I play with my hair all the time. Well, not when I play ping pong. But a lot of the time.

If At First You Don’t Succeed…

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?

 

Sonny Knows The Alphabet!

Sonny had one of his best days ever today! I think because we hadn’t seen each other for two weeks he was looking forward to going out more than usual!

He gave me loads of hugs and kisses all day, and even when I said, ‘Sonny we are just going to pop into the shop to get some water before we get on the train’ which usually would stress him out, he was so casual and calm about it, and helped me give the money to the man at the till.

Sonny played a game in the soft play centre, getting the balls from the ball pit up to the top of the slide, then watching the balls go down the slide and then repeating this process about 20 times. (A woman who worked there told him off for moving all the balls, but I spoke to her and said as he isn’t bothering anyone, and getting a huge amount of joy from his game, would it be ok if he carried on?! She was fine about it once she found out he has autism.) It was really funny watching him trying to climb up ladders with his hands full!

Then he surprised me by showing me he could say the alphabet! (Click here to see.) Well, he needs a bit more practice, but it is a good start! My favourite bit is when he says ‘W’. He just bowled over to the alphabet puzzle and said it without being prompted or asked to…I was so chuffed that I had my phone on me to video it because I asked him to do it again afterwards and he straight up refused.

Anyway, I was really proud of him today. he played really nicely with the other children in the soft play centre too,  and considering it was really noisy and busy he did well not to get stressed.

YES SONNY.

Miss You Son!

I didn’t get to see Sonny last weekend, as he was ill! (But according to his mum, he was asking for me on Sunday, which pretty much broke my heart.)

But not seeing him has made me realise just how much he means to me. I miss him so much!

Whenever I tell people what I do, one of the things they say is, ‘oh that must be really hard, what a selfless job!’ It is hard, as most jobs are, but it is definitely not selfless.

I get so much out of seeing Sonny, and when I don’t see him (like this last weekend) I really feel like I have missed out. If anything, I have a selfish need to see him. He makes me laugh like no other, he teaches me like no other, and we get to do cool stuff and mince around London together.

I think its fair to say I am attached to that small little man of little words, and I think its fair to say he is attached to me. To have a trusting relationship with another is so important to growth and development for children, especially those with developmental difficulties, like Sonny. But I suppose in terms of working with children, it can be bad for the child to get too attached, because they can come to depend too much on the adult. And what if that adult doesn’t work with them anymore? In a school setting I agree with this, as it can really affect a child’s development if that attachment is disrupted or broken. But with Sonny, I kind of feel like he is a younger brother I get to see every weekend.

And I imagine I will be in his life forever now (If his parents allow it!) Well, or until he’s had enough of me, (which I hope will never happen!)

 

He Didn’t Do That On Purpose…!

 

Last week, Sonny fell asleep on the way to the funfair. This did not bode well. However, when we got there it was pretty clear it was going to be a good day. I mean, I was pretty excited. Nothing gets me going more than a good bouncy castle and some candy floss. (Bouncy castle was hard to manage. I completely face-planted and consequently emptied the entire contents of my bag onto the floor. Serves me right though, I was trying to show off.)

I also got the pleasure of watching Sonny get put inside a life size inflatable ball that was floating on water. Effectively a massive hamster wheel. Twice. It was great. (Click here to see).

 

I had a minor incident involving a parent on the huge inflatable slide. Sonny was climbing up the side ladder, but was struggling, and kept falling down. He thought this was hilarious. But then, other children came up behind him, so he was accidently barged one child as he fell. The child got upset at this and so I said, ‘Sonny come down now, it’s a bit too busy there.’ And was just about to explain to him what had happened and speak to the upset child.

Then the child’s mother came next to me and said, to her child, but very loudly, ‘Get down from there away from that mean boy, the one in the white hoodie, he’s doing it on purpose, he’s laughing so come away from him now.’

INSTANT RAGE descended upon me. I turned around and said as politely as I could manage, ‘he has autism and ADHD, he is NOT doing it on purpose.’ She flummoxed and said, ‘oh I didn’t know…’ and then Sonny had come down so I took him off to get his shoes on, while I tried to control myself

Afterwards I felt bad, because it must have looked like Sonny did barge the other child on purpose because he was laughing. But he didn’t understand what he had done wrong. And she genuinely didn’t know he has autism, and how could she have? He doesn’t wear a sign saying, I have autism so excuse any anti-social behaviour. I would never use his autism as an excuse anyway, and I feel like situations such as this one is a good way of learning about empathy and how to engage with other children in an appropriate way.

So if I hadn’t of been so angry, and if she hadn’t of said the word, ‘mean’ I would have explained to Sonny and gone over to the other child and asked Sonny to say, ‘sorry’ but meanwhile talking about it being an accident etc. And Sonny would have learned something and I could have spoken to the mother about autism and it would have been a good experience for all. But because I was so enraged by the whole saga I had to leave, to avoid getting upset and saying something offensive!

So I was both annoyed at the lady for making me angry and annoyed at myself for getting angry. Grr.

The thought of someone saying Sonny (or any child in fact, with or without autism) was ‘mean’ really got to me. All the different ways in which Sonny shows his kindness and affection is unconventional but is no less than any child without autism. I know she wasn’t aware he had autism, but that just really upset me!

Lesson learned- people will misunderstand. It’s my job not to take it personally when they do, but to use those moments as ways of engaging others in conversations about autism. So I’ll take a leaf out of Sonny’s book. I’ll be stronger.

He fell asleep on the way back too. He didn’t even wake up for my duet of a Spice Girls Medley with this guy on the tube.

Sonny Is Strong

I didn’t get to see my Sonny this weekend, but have been thinking about this for a while so thought I would write it down.

Sonny and I get a lot of attention when we are out and about (and not just because we make ridiculously good fashion choices. Well that’s mainly Sonny. Or Sonny’s parents on behalf of Sonny.) It doesn’t happen often, but Sonny can sometimes have meltdowns when we are out (which consist of flapping his hands, screaming LOUDLY, throwing anything in the vicinity and trying to run away.)

I am only aware of others though after he has calmed down. When I see Sonny getting stressed, I am so focused on him and helping him to calm down that I am totally unaware of anything other than Sonny in that moment. It is only when he has started to relax (usually after a long cuddle and some deep breathing!) that I look up and I see a fifty strong audience gawping at what a scene we have caused. At first he may just look like a naughty child, but I think it usually becomes apparent quite quickly that he has autism, as when he gets upset we sign to each other as well as talking.

Luckily, I have an impressively high embarrassment threshold. In the time I have spent with Sonny taking him out, there has only been one incident that involved other people’s reactions to him that really affected me. It didn’t embarrass me though, just made me really sad.

We were at a soft play centre, where there happened to be a big birthday party going on for a child. There was a huge mountain of presents. Sonny and I were messing around in the ball pit and he upped and bolted (he is surprisingly fast considering his legs are half the length of mine.) I ran after but I wasn’t quick enough so was looking for him for I would say MAX two minutes. Apparently that was enough time for him to cause carnage. I saw some commotion with the mums over where the party was. They were pointing to the top of the climbing frame, where Sonny was sitting. He was unwrapping three presents. Casually.

One of the irate mothers looked at my horrified face and said, ‘is he yours? You need to take better care of your child, these are his birthday presents, oh god how awful he is so naughty’ etc. I then explained that he didn’t understand because he has autism, and he didn’t do it intentionally. So I got Sonny down from the climbing frame and tried my very best to explain to him that the presents were not his to unwrap. I took him over to the angry mums (who had calmed down after they realised he has autism) to apologise.

Then something happened that I could not  have predicted. I started crying. I started saying, ‘he honestly wasn’t being naughty, he just didn’t know they weren’t for him, he just doesn’t understand.’ I wasn’t crying out of embarrassment though. I think it made me more aware that through his life he will be misunderstood by so many people; His behaviour misinterpreted as naughtiness or selfishness, his communication of his anger and distress seen as ‘spoilt’ or ‘silliness’ when those feelings are genuine, feelings that need to be expressed and then respected by those around him.

I just suddenly felt really sad for all the challenges that Sonny will inevitably face in his life. This was the first time it had become so brutally apparent. I usually just think of what a wonderful adorable loveable child Sonny is, but in this situation I was confronted with the fact that other people may not see him in the same way I do. They do not understand him like I do.

Sonny was only vaguely affected by the whole affair. He seemed sad to see that I was sad. He gave me a kiss on the hand and a huge smile (showing his caring side!) Sonny is 7 years old and shows a strength of character and courage that I do not see in most adults. He will face challenges in his life. There will be barriers for him, that for those of us without autism have no idea about. But there is no doubt in my mind, not even a shadow, that he will overcome them.

He is strong.

He is stronger than he may seem.

He is stronger than I think he knows.

He’s Growing Up So Fast!

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!)

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!)

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!)

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!

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

 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).

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.

 

 

 

Big Steps For Sonny At The Science Museum!

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.

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