Celebrating success

Today’s blog is about celebrating success.

Something I feel is so important in helping my son to grow, flourish and development. Especially in a world that is quick to try to force his beautiful ‘square peg’ nature into that dreaded round hole.

We have prepped for weeks for him to take part in my dance school performance yesterday. Arming him with strategies to help him feel calm – squeezing his teddy, holding hands with his assistant teacher, knowing that after he can have his ‘reward’.

A morning of nervous tummy aches, worried about it being too busy and noisy, asking who will be there.

I didn’t sleep the night before – I was nervous for him! I know how much he really wanted to do it but know how crippling the anxiety can be.

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I’m pleased to say the afternoon was a success. His little face when he ran towards me telling me “I did it mummy, I did good dancing!”

What a feeling and special moment for us both. I’m so proud of him. The same feeling when he took part in sports day, sang at his school assembly, when he manages during school lunch, when the timetable changes at school, when he strives to understand and interpret an emotion that’s unfamiliar.

Keep going my bubba, I’m so proud of you and I will continue to fly that square peg flag.

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Our triangle zoo adventure

The last few weeks have been quite tough. Charlie’s anxiety has been higher than usual.

It has taught me a lot, and the more we delve deeper to understand how to help him, the more we are learning about his fascinating autistic mind.

There are so many factors that contribute to making Charlie feel unsure, uncomfortable or anxious. The aspect I’m focussed on today is communication.

If he is able to explain himself and make himself heard, this can help us to support him in getting through an anxious moment.

Often the frustration of not being able to get across his point can lead to the later anxiety.

This often is the case when his literal thinking can prevent him from understanding or making sense of a situation. image sen

For example, we went to Colchester zoo a few weeks ago.

We go exploring and come across a HUGE slide. Charlie is raring to go and climb the ropes, ladders and bridges to get to it. We arrive at the top and after 30 minutes are still there. By this point Charlie is approaching meltdown. He was so upset. He wanted to go on the slide but was so afraid. My calm, reassuring tone throughout didn’t calm him. I used every tactic. Shall we go down the ladder Charlie? How about the slide with Mummy? The slide is a circle (the entrance was circular) and the ladder is square (the hatch to the ladder was square). Yes! I can use his favourite thing – shapes – to get him down! Circle or square Charlie? Square or circle? “Mummy I just need a triangle!!”

Well what can I say to that?!

It stopped me in my tracks.

No amount of explaining that I cannot create a triangle from thin air would’ve gone down well here!

Instead I explain that right now there’s only those two choices. I knew this wasn’t what he wanted to hear! But I also knew the anxiety would release once I could get him down that slide… The feeling of it, the sensory release that a big high slide would give him I knew is just what he needed.

There was only one thing for it, I had to grab my 4 stone 4 year old and holding him tightly go for it and slide down together.

As we got off, tears still streaming he gently wiped them and said. Mummy I’m not crying anymore!!

We were both soaked (it was pouring with rain) but never been happier. The rest of the day you could see a visible difference in him. Like a weight had been lifted.

Now where’s that triangle…….

Rose tinted glasses

Over here at rose tinted towers everything is fine and dandy, and all is pretty happy actually.

I have a wonderful son who brightens my day, every day. A loving, supportive partner who would go to the moon and back for us and bloody great friends and family.

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Don’t get me wrong my life is far from perfect, but what I do have, and the people I share it with, I really try and make the most of and see the positive in whatever comes our way.

Discovering my son is autistic, separating from his dad when he was two years old, coping and dealing with the appointments, reports and emotional stress hasn’t always been easy. I could have gone in to meltdown, and at times it did feel like it was all too much. But you know what? Those rose tinted glasses don’t half come in handy when you’re feeling pretty rubbish!

I made sure from day one Charlie’s dad and I have a strong friendship, and good communication. This isn’t something that just happens – it takes work, patience, understanding and time. We both feel strongly this is best for our boy.

My partner and best friends are super supportive and have had a huge impact on both me and Charlie. Their commitment to joining us on this journey of learning about the fascinating autistic mind and everything which that brings is unreal actually. I love them all dearly…you know who you are :0)

So why do I tell you all this?

Well do you know what? I have been told at times that my positive outlook is unrealistic, silly even.

Perhaps those rose tinted glasses are my shield, my comfort blanket, my crutch – they are what keep me going, appreciating the small things, to stay focused.

Here’s to living life through a pinky, rouge coloured lens……..

Apparently it’s the ‘IN thing’….

As many of my blog followers know I love writing about all aspects of what makes my son so special. I also write from the heart about what can be challenging and how we face it with a smile on our faces.

This week I feel compelled to write, as what I have witnessed has not only hit me personally but also professionally.

Many close to me know I’m happy go lucky, diplomatic and hate confrontation. However what I heard yesterday has made my blood BOIL!!!

Whilst on an instructor forum I read that apparently ‘Inclusion’ is the ‘in thing’, ‘it’s hot right now’………ok, excuse me whilst I pick my jaw up from the floor!!

I have taught children’s dance and fitness classes since I was 14 years old. Years and years before Charlie was born I was learning all the time about every aspect of teaching. At NO point have I ever considered I would not include a child because of a diagnosis, special need or learning ability. Neither do I include children in my classes now that do have a special need to ‘look good’?!!

Apparently for some though ‘inclusion’ is an ‘in thing’. What like the next group class fad like Zumba?!!

I am furious that a fellow children’s instructor has the audacity to say that including a child in her class is apparently being done because it’s ‘hot right now’.

I challenge you to attend any of my classes and pick out the children with anxiety issues, autism, dyslexia, cerebal palsy, ADHD, a shy child, a confident one, the chatty one, the cheeky one, the super intelligent, the sporty….shall I go on?

Every child is important, valued and equal, why on earth would I be teaching in any other way? Surely I’m in the wrong job if I was?…..

Anxiety 

A debilitating, invisible feeling that any of us get when we feel stressed, under pressure, nervous or scared.

Anxiety is SO underestimated and is one of the most misunderstood parts of Autism in my opinion.

Managing and being aware of how my sons anxiety levels are seems to be a thread that runs throughout everything we do.

It can be affected by so many things- tiredness, environment, the weather, what’s being asked of him that day, transitions, certain noises, textures and situations. 



This picture perfectly describes one of Charlies own little strategies to release his anxiety – he felt a bit sensitive and anxious before bed and so he asked for “teddies in a circle” – teddies because they are a comfort, a circle because it’s reassuringly predictable for his black and white mind and gives him a sense of safety and security being surrounded by them. 

So much of managing anxiety is linked to Charlies sensory needs. He does the “fruit jobs” at school, delivering the fruit basket to each classroom – “heavy work” that helps him to feel grounded and focussed. 

Big cuddles and piggy backs are often a favourite- the feeling of closeness and pressure can help him to feel calm- I know I get funny looks piggy backing him to school – but quite frankly it works for us so there you are! 

We are learning and growing all the time and both myself and Charlie are getting so much better at noticing what will trigger anxiety and how is best to manage it. We don’t always get it right though, so your support is always gratefully received.

X

Charlie’s Angels

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We really value our support network and the many people within it that mean a lot to us – LSAs, Friends, other mummies at school and Sparkle, and some very important members of Family.

These people share many characteristics – Non Judgmental, supportive, empathic, treat Charlie and I as individuals and not just a child and parent with a diagnosis, taking an inquisitive genuine interest in the different things we face.

What this does do unfortunately though is highlight those with a knowledge gap and/or ignorance to the challenges people like us may come across. Just last week I was left gobsmacked hearing of those working with kids that have this level of ignorance.

I guess I had become surrounded by so many amazing ‘Angels in disguise’ that I lost touch with the fact that in the wider world the majority of people have no knowledge at all about Autism. Or worse they have a ‘Katie Hopkins’ approach, belittling it to something that is another word for naughty kids …..good grief if only she knew!

His angels allow Charlie to flourish in a world that can be a bit tricky and confusing for him and allow him to be just like everyone else. After all that is what is important – that we find that balance between giving Charlie the right input, support and adaptations and then treating him just like all his peers.

He is growing up in a tough big wider world and I know that wrapping him in too much of that lovely soft fluffy cotton wool won’t do him any good long term.

With the help of Charlie’s angels he is flourishing, learning and becoming independent and I’m so proud.

I value each and every one of the people that positively influence Charlie’s life. From his peers to his LSAs and so many people close to us.

Thank you.

x

PS The whole time I have been writing this blog I have been humming this song https://www.youtube.com/watch?v=0lPQZni7I18

Those of you that I consider to be one of those Angels I’m now imagining us fighting off the ignorant, blinkered majority Destiny’s child style….. :0) Watch the video  – the lessons that the angels complete are – Agility, Altitude, Combat & Speed – they all come in very handy being an Autism Angel :0)

Early intervention

I probably do make decisions that others find hard to understand.

I probably do over analyse everything, especially things to do with my son.

I probably approach things with more anxiety, caution and sensitivity.

I never thought Charlie would speak like other kids, understand emotion, make friends, be independent, be able to play games and join mummy’s dance class.

When you get a diagnosis of autism it’s scary, upsetting, you’re stepping into the unknown, and you’re told things and read and research things that leave a lump in your throat and a knot in your stomach.

Hearing your child say I love you is a thing most parents take for granted. image Charlie learnt to speak using echolalia – learnt phrases or echoed speech (copying his favourite TV programmes, copying others around him) so until very recently Charlie would only ever echo me if I said this to him. To hear him say “I love you” without prompting makes me want to cry my eyes out!

For me, intensely working with Charlie and helping every area of his development is key to giving him the best start in life.

Its hard at times, it’s repetitive, he has taught me about patience, being calm and appreciating the little things in life that we so often take for granted but are such a big achievement.

So for now my decisions may not make sense to everyone but they are right for us, right now, at the time of Charlies life that is so key.