Author: janesparkle

Sticky situation


See having a special brain requires some special understanding. 

It means we need to stop and think, have patience, be alert to those little triggers, take time, listen, really listen mostly to the unsaid…

That’s where you can see, hear and tell what’s going on. Where we can support, chat through, understand and help. 

My beautiful son has progressed more than we could ever imagine, over the last 3 years especially, he’s grown from a toddler to a proper little boy. Chatty, friendly, polite and full of life. 

For most people they often remark with the best intentions “you’d never know he was any different”, “he doesn’t seem different to me”, “he does so well”. I know these comments come from a good place, and we don’t ever take offence. 

We are all different, all have our own quirks and ways we do things. 

We don’t ever let the fact that Charlie is autistic be a big deal, stop him doing things, use as an ‘excuse’ (harsh as that sounds it could easily be used as such), it doesn’t define him, and doesn’t limit his success.

He reaches his potential and goes beyond our expectations so often – house captain, school council, performing on stage in front of 500 people, snorkelling in the sea, walking up to the bar and ordering himself a drink (and thanking them in Greek :0), I could go on and on!) 

This doesn’t just ‘happen’.

He didn’t wake up one day and decide his anxietys are gone away. 

He works really hard to achieve what he does. 

Quite often we have to go through a phase of what we call ‘Getting stuck‘.

Being autistic often means a delay in processing. Something that happens this morning that bothers Charlie may not be apparent until lunchtime, dinnertime even. 

Getting stuck is his way of processing, having a little time out, being in his own bubble. He might be playing with a toy for ages, staring into space looking like his just daydreaming, watching something on the iPad.

Of course sometimes he can find it hard to get unstuck. He gets stuck on something and can’t seem to find a way to ‘snap out of it’. 

He is starting to chat this through with us now and understands why he does it, and that he needs a bit of time out – don’t we all at times eh? 

These sticky situations are helping him progress, to grow, and develop. 

Even in this photo, Charlie was stuck on playing with the stones, sat there for ages and ages. It’s like he has an inbuilt mechanism to deal with his feelings and stresses. Afterwards you can physically see a weight is lifted. Maybe we could all learn and thing or two?! I know I certainly do. 

I am so proud of you bear, and all you achieve xx

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The latest from us

I haven’t blogged for a while. At times I’ve almost got too much to say and find it tricky to summarise, break down or put into words my thoughts and feelings, you almost have to work it through in your own mind first and then feel ready to write about it. 
We’ve been busy working through little milestone by little milestone and Charlie makes me burst with pride every day.

You question yourself, challenge yourself, wonder if you are being patient enough, or too soft, or too anxious… all parents do I’m sure… It’s just a magnified amount when you know your child needs you to say, do and act on their behalf when they are unsure, or unaware of just what it is that should be done. 

From Charlie doing his special jobs in front of a packed church at our wedding, to him standing up saying a prayer in assembly, to getting himself dressed, all these things don’t just ‘happen’. He puts a lot of time and energy into preparing for them, as do we – visual timetables, talking and walking through the event before it happens and reassuring him there’s nothing to worry about. 

  
Mind you sometimes he really does surprise us, like this morning when he made his own bed “it’s ok Mummy you just do your own i will make mine!!” And he did so, better than most fully grown men ;0) or the other day when he told me in the car “I’m going to look out of the window and relax mummy, I think you should too!” He couldn’t be more spot on! Chill out mummy……

I’m really bloody proud of him and will continue to celebrate every little thing he achieves and fight for the help he deserves. 

Jane x

All in the preparation

We have been preparing this week for an event that Charlie has been practicing for and looking forward to for months. Mummy’s dance school show!

He adores coming to class and having fun dancing with his friends.

It meant a lot to us that the theatre have been so supportive in helping to prepare Charlie for the big day.

We visited on Monday and Charlie experienced this atmosphere for the first time, got to sit in the dressing room, hear the music and how loud it was, see all the flashing lights whilst standing on the stage.

It is invaluable to him to have this preparation, the time and effort of others to help him to know what to expect, hence really helping to reduce his anxiety.

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I’m now preparing his visual timetable for the day so he knows what order things are happening in and again this will help him to feel prepared and ready for the day.

I’m so immensely proud of him and cant wait to see him up there having a ball on Sunday.

I will let you know next week how it all goes!

Jane x

Drop by drop

I’m so proud of Charlie and all he achieves. 

I enjoy helping him to develop and seeing the difference it makes to him. I recognise too that he has many influences around him that help to shape, mould and make him the beautiful young boy that he is. 

I watched an article once that discussed teaching social skills to individuals with autism  like you may teach other children maths. Repetitive modelling of behaviours, clear, concise explanation of social etiquette, how it works, why it’s important. This has always stuck with me and has definitely featured heavily in how I parent Charlie. So many people close to us just naturally pick up on this now too. I never take for granted though this very special effort that so many of my family and friends take. 

I have been doing lots of self development work recently for myself as part of a new business I have started and this quote came up on a webinar I listened to last night.

  
 It has really struck a chord with me because it is so true of how all of us learn and develop, but especially so for my son who has a fascinating autistic mind. This could have been written about him! Little step by little step he grows, advances, develops and learns – all the time enhancing his beautiful nature, personality and character. 

If you are earlier on in your journey than us, just getting diagnosis, maybe having a rough time or simply feeling like it’s all too much – remember that every little step is something to celebrate. Be positive even when everything is stacked against you. Praising those tiny achievements will spur both you and your child on.

We still have challenges, tough times and moments of upset. What matters is how we come through them and what example I am setting for him. He has and continues to teach me so much… 

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.

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)