Friday, 24 February 2017

World book day heroes

World book day is the day that children up and down the country arrive at school dressed up as characters from their favourite books. Playgrounds will be awash with Harry Potters, Little red riding hoods and Gruffalo's to name but a few.
Facebook will be lovingly taken over by photos of happy smiling kids posing in the kitchens of every home. Spirits will be high, routine will be changed, and even the teachers join in with the fun by dressing up too, making it a day of frivolity and fun learning that everyone looks forward to.
Except maybe for that child that is crying in the corner of the corridor that hasn’t dressed up.

The child whose mum can’t get her through the front door because she is pacing up and down outside in the playground.

Or that child who is already sat on the carpet reading his book not joining in with the fun.

At first glance you could think that they were crying, or not joining in because their mum had forgotten their costume or they were just being silly.

But you could be wrong.

The child crying in the corner could be autistic or have Sensory Processing Disorder. And that child may have spent the previous week worrying about coming to school today……

But we normally do Maths on Thursday Morning, not assembly?

That costume is itchy!

It will look silly on me!

People will laugh at me!
I don't know what's happening?
I cant' see peoples faces? 
I'll be the only one not wearing one?
My teacher will look different!
But we wear uniforms to school, not costumes?
I don't know what to say to people about their costumes?
I will get too hot!
Face paint hurts me!                
My tummy feels all bubbly inside!
What happens when we have PE?
I know from experience that mum and dad will have spent the last week trying to prepare their child for today. But no matter how much they want their child to dress up like everyone else, but their child just has too many worries about the day that they can’t take away.

The world is confusing and unpredictable even on normal school days, so for their child today it must feel like they are walking into the lion’s den.
Believe me today is no fun for any of them.
But bravely they come to school, with half a costume, no costume, or maybe a book in hand is all they have managed. But really its not that important - they've got him in, and that's what really matters today.

Despite how anxious they were about the day ahead, their child has been so brave inside - and they have got them in!
Despite the noises, smells, costumes, scary faces and unpredictable changes to routine that lie ahead they have achieved the amazing - and come to school. That's a huge achievement.

So to that mum and dad today I say well done, and to your child I say I think you are amazing!
Yes your child may not have dressed up today like everyone else but it doesn’t make them any less. Your child is different yes, but never ever any less!
And please believe me I'm not writing this to put a dampener on what is a very fun day for many kids at school, I think its a fabulous day of celebration. But I write this so that you may stop and think - if you ever see a child not joining in, don’t make assumptions, don’t judge a book by its cover.

Because that child may not be a Gruffalo or a 'Cat in The hat' today. But they could well be one of the bravest little people in school instead, a true hero or heroine  - not a fictional one, but a real life one - and in my book  that deserves to be celebrated too!
Have a fab world book day folks, whatever you do. 
Mrs M x

Saturday, 18 February 2017

A letter to the parents of a child with no diagnosis

Dear parents of a child with no diagnosis,
I want you to know that I see you.
I want you to know that I feel your pain.
I want you to know that you don't need to do this on your own.
I want you to know that no matter how alone you may feel right now, there will be better days on the horizon.
I want you know that I understand how it feels inside when passers-by, or even worse your own family, judge your parenting by criticising your child. Or brazenly stare as your child has a meltdown in the supermarket. You want the ground to swallow you up and make it all go away.
You want to scoop your child up and hide them from the world.
People can be so cruel. It hurts so much. A raw deep emotion that only someone who has faced those stares can understand.
I also want you to know, that I know how it feels inside to be on the receiving end of your child’s challenges.
You feel every emotion with them, you are in the firing line and sometimes get hurt physically. I want you know that they don’t mean to hurt you. It will get better, and it won’t always be like this.
I want you know that I understand those strange emotions we feel as parents when we are hurt by our own child. We are their safe place, the person they can be themselves with… and that can take its toll.
So, if you are reading this today and recognise anything I am saying, then please…look after yourself too. Because living in a high state of alert and constant stress can make you very poorly.
Trust me I know.
Please believe me when I say that it’s not a sign of weakness to ask for help.
It’s not a sign of weakness to feel overwhelmed with it all.
It’s not bad parenting to battle with your own mental health issues when you’re trying to put on a brave face for the world to see.
The uncertainty of the situation you are in while you are waiting for answers in incredibly stressful. It consumes your every waking moment and haunts your sleep most nights.
I want you know that although the wait for answers may be long, those meetings at school may be strained and the support you receive as a family may be non-existent…that I see you, and I am with you everystep of the way.
I want you to know that on those days when you pick your child up from school and there has been another issue, or when that parent in the playground throws accusations your child’s way without realising how difficult simply getting to school is for your child... well I want you to know that I am here.
Me and a whole army full of parents up and down the country that know how it feels to be stood where you are right now…. Scared. Alone. Overwhelmed. Isolated.  
I want you to know that we are right by your side.
Don’t be afraid to ask for more support at school. Put support strategies in place now. It will do no harm to your child at all…diagnosis or not.
You know your child best so have more faith in yourself. Your child may not yet have that elusive piece of paper but don’t let that stop you doing what you need to do. Timetables, visuals, social stories, sensory diets… whatever works.
No matter what people may think or your family might say. Put any support you can in place now as early intervention is key. We don’t have time on our side like the government seems to think we do. I waited 5 years for my son to receive his diagnosis. Its not good enough.
So, don’t wait.
Be proactive.
Piss people off, don’t worry about upsetting people, become a pain in the rear, be your child’s voice and knock on doors until you get the help your child deserves.
I also want you to know that eventually, when you have that piece of paper in your hand, the one with your child’s formal diagnosis on it for all to see, its not going to solve all the problems and suddenly make everything all better. This is your life now and that can take some adjusting to.
I want you to be prepared for the wave of emotions that will hit you when the day finally comes. You may feel a mixture of relief, anger, sadness and some people even feel grief.
You may feel relief that it wasn’t all in your head, that is not your bad parenting and relief that now you may be able to get the support you need.
You may feel anger, asking yourself why my child? Where is the fairness in that? You may even question your own faith. I know I did.
You may feel sadness and grief. Grief for the life you thought you would have. Mourning the loss of all those things that you imagined you and your child would do together.
No one has the right to tell you how you should feel, or how you should react to getting that diagnosis for your child. It is a deeply personal experience and it is also a lot to get your head around, I’m not going to lie to you.
When your child gets a diagnosis, it can hit you like a tonne of bricks.
But that doesn’t mean that you love your child any less, or want to change them.
Please give yourself time… be kind to yourselves and let all those feelings wash over you, do what you need to do to get through those first hazy days of diagnosis.
Then will come acceptance.
You will still have battles. Face judgements and have bad days.
But there will also be lots of good days. You will want the world to see all the amazing qualities your child has to offer.
Your child will have the protection that a diagnosis provides to help you fight for access to services and get the right support at school.
You will have answers, and with that comes confidence in your own abilities.
And then life will settle into a new rhythm. You will be on a different path and soon that its OK. Its not what you expected, but this new road has some amazing views along the way and has a lot to offer.
I want you to know that no matter how long you have to wait for answers, no matter how hard things are for you all now. There is light at the end of the tunnel. And you never have to do this alone.
And your child may not be able to thank you for everything you do for them… but I can.
Thank you for being an amazing parent. Thank you for never giving up and letting your child know that despite their differences they are never less!
Thank you for your unconditional love and patience. And thank you for putting your own life on hold in order to support your child.
I see you, and I am thankful for everything you do.
Our kids are amazing…. and so are you!
With love,
Mrs M x

Wednesday, 1 February 2017

The many faces of anxiety

                                     For my son, anxiety is part of who he is.
In fact, it is as much a part of his make up as the colour of his hair or the freckles on his nose that come out every summer. It is his constant companion and is far more than just a bit of worry that can be soothed away with some reassuring words of encouragement.
It is with him forever, and it is important we take it seriously as it plays such a huge part in his life.
It was also actually one of the first indicators to us as he was growing up, that something wasn’t quite as it should be. The older he got the bigger his worries seemed to grow. But at the time we didn’t realise that all the different behaviours we were seeing were driven by this hidden force lurking inside him. And the more we tried to overcome it and force him into situations that we thought he should be able to cope with, the worse we made it; because we didn’t take his anxiety seriously. We didn’t realise how much his anxiety was controlling his emotions and behaviours.
So we bowed down to pressure.
Pressure to make him conform because he looked so ‘normal.’ Pressure from professionals who didn’t have the answers we were so desperately seeking. And pressure from ourselves to live up to the perfect family image that everyone expected.
Pressure to fit our son into societies neat little boxes.
But in fact, we quickly learnt that the key to us being able to move forward as a family unit was far more about us learning to accept and embrace his differences as much as anything else. Learning to accept that his anxiety was part of who he was, and it wasn’t going anywhere. And after all that we had to learn how to unpick his behaviour to see what was really going on underneath the surface.
And so out of necessity his anxiety became our constant companion. We have reluctantly learnt to share our lives with it, having to let it into our routines and family time. Allowing it to dictate the ebb and flow of daily life like the tide. It’s inevitable when your child has anxiety linked with their autism, there is no hiding from it…ever! So, we learnt to accept that it is part of what makes him so unique and roll with it.
Sometimes we can all see his anxiety, even people that don’t know him inside out like I do. It is etched on his face, in his body language and it seeps out of every muscle in his movements. There’s no mistaking it. It controls him like a puppet master making him bite his nails, compels him to ask the same questions again and again with nothing being able to satisfy its hunger. It makes him pace around the room like a caged tiger, and at times it completely takes over his body. Primal instincts kick in which trigger the fight or flight reflex in his body.
But this anxiety also has a darker more secret side.
The side that not everyone sees. This kind of anxiety disguises itself and takes many forms, and shows many faces.
This cruel force can morph and change costumes at its own will. Like a shape shifter it controls our children and confuses the adults who are fooled by its whim. It becomes hyperactivity, violence, exhaustion, fear, illness, or demand avoidance to name but a few. All these facets of our children are driven by anxiety. It can hide and pounce as children learn to mask their emotions and fit in to the confusing world around them.
And so, we find ourselves putting unhelpful labels on our children to give meaning to behaviours that we don’t understand.
High needs, challenging behaviour, low functioning, disruptive, hyper, impulsive, normal, obsessive, high functioning, passive, aggressive, avoidant, or even naughty.
But I fear that these labels only serve to box our kids in.
Making us set rigid expectations for them in a world that should actually be far more flexible for children on the spectrum. These labels can lead us to make assumptions and take things for granted. Not seeing the potential pitfalls and variables that affect autistic children so intensely. Leading us to miss the hidden anxiety that is so often driving so many of these behaviours that society wants to put a label on.
When I think what we really should be doing is looking at how we, as the adults, respond to our children’s anxiety. How we reflect on our own practice, honestly, and without fear of criticism or failure. Believe me when I say that over the years I have made many mistakes. I have got things wrong, and spent many a sleepless night thinking how I could have handled things better. But when I think about it, those mistakes taught me so much.
So as practitioners, we need to be asking ourselves if we were flexible enough (because when fire meets fire no one wins I can tell you!) We also need to be sharing good practice, sharing our successes and our failures. Working collaboratively with parents, and talking to colleagues openly.  Bouncing ideas off each other in order to support these vulnerable children effectively as a team.
We need to see beyond the labels.
Understanding that often their behaviour is telling us, in the only way that they know how to, that something is wrong. And often if sensory issues can be ruled out, then the controlling factor is usually anxiety in disguise.
Real, deep, life defining anxiety.
Anxiety about failing, anxiety about not understanding, anxiety about the social interactions and rules they can’t makes sense of. Anxiety about filtering out the acute sensory overload that is probably taking up all their energy. Anxiety about holding it all together and that sense of implosion that is building in their tummies as the hours tick by until home time. And even anxiety about being anxious. It’s exhausting for them, and often tricks us adults into thinking that the issues lie elsewhere…

·       It can make kids isolate themselves and withdraw often getting overlooked, confusing us to think that all is well, but whose parents report seeing a different child at home. The ‘Jekyll and Hyde’ kid that you can’t make sense of.

·        It could be the real cause of the child in class that often complains of headaches or feeling sick, even asking to go the toilet more often than they probably should.

·        It’s probably the source of all those delay tactics when it’s time to settle down to work, the real reason that a child seems to have a knack of finding lots of distractions around the classroom, rather than them simply being fidgety or hyper.

·        It could be controlling the child in class with their head down on the table, chewing their sleeve, scratching their arm or rocking back and forward on their chair. The one you may think is just being stubborn.

·        It’s almost definitely ruling over the kid that needs extra support as they often refuse to even attempt their work, and regularly disrupt the class because that is better than them facing the embarrassment of failure in front of everyone. You see anxiety breeds low self-esteem and the need for self-preservation.

·        It can also be the real reason that a child can struggle to follow verbal instructions in the classroom, and leads them to regularly forget what they are meant to do when the lesson starts. Not simply because they have poor concentration or just don’t listen.

·        And I can say with certainty that anxiety will be the puppet master pulling the strings as a child gets frustrated and explodes in class, often with no awareness of who is around them and how they can hurt themselves or other people in the process. It throws chairs and swears in anger, and it leaves children and staff confused and scared in many schools up and down the country. That child is probably overflowing with stress chemicals pumping through their bodies. Going from one panic attack to another in a constant primal state of flight or fight… due to anxiety.
So instead of labels

I think we need to be open minded and far more flexible.

We need to see beyond the behaviour, and play detective to peel away the hidden faces of anxiety that is often driving our children’s behaviour.

Perhaps by making behaviour analysis tools part of our daily practice, so we can begin to really understand what’s going on with these kids and break down those walls of hidden anxiety.
We need to think outside of the box and make real accommodations in the classroom that are meaningful and not just ticking a box for a policy.
We should understand that one size doesn’t fit all, and every child is different. And see things from the child’s perspective and not just our own.
And slowly but surely, these amazing kids will begin to trust us, let down their guard, and their inner anxiety may just have nowhere to hide anymore. No more shadows to lurk behind and no more masks to wear.
Mrs M xx
This guest blog was written for Kathy Brodie Early Years Advisor and can be found here at -