You may see a label, where I see my son!

What do you see - A cobweb, or a beautiful moment to be captured?

You look may look at my son and see a child with autism. Or you may look at my son and think he doesn’t look autistic at all.

But when I look at him all I see is his bright toothy smile, his infectious giggle and the long locks of brown hair that he hides behind when he talks to people, I see my son!

(Who also happens to be autistic).

One of the wonders of humanity is that two people can look at something and see very different things, it’s all a matter of perspective.

You could see a hurdle where I see a challenge

You may see sadness where I can feel joy

You may see symptoms where I see strength over adversity

You may see weakness where I see bravery

You may see a puzzle where I see wonder

You may see a label where I see my son

             If all you see is the label when you look at him, then you are missing out on so much!

But this is the complex world that my son has to navigate his way around. And as his mother, I had to learn how to support him to make sense of it all.

How could I do that when we live in a world in which people’s opinions differ so vastly, and their past experiences shape how they interact with him?  How could I understand how he feels and help him make sense of this crazy world, and help others see who he really is?

Simple… I had to change the way I viewed my sons’ world. The ups and downs, the highs and lows, and the challenges he faces daily. Not to mention the inner strength and talents he has within.  I had to change my perspective, and step into his shoes to see the world as he sees it…

"You see people can just think that I just choose not to leave the house, and I am a recluse. But imagine a world in which complex interactions, and going beyond the safety of my house floods me with all-consuming anxiety that can make me feel physically sick. Now can you understand why stepping outside is so daunting for me sometimes mum?"

"People can think I don’t understand what they are saying, so they talk over me or ignore me completely. However try to imagine how it feels to struggle following the ebb and flow of conversations. Not knowing how and when you are meant to respond, and what people’s facial expressions actually mean. It’s no wonder that I avoid conversations with people who don’t know me very well."

"People think I have no sense of humour or can’t take a joke. But instead try to imagine living in a world where people say things they don’t really mean and make jokes about things that just don’t make sense to me. It’s not that I don’t have a sense of humour, I am really funny and make people laugh every day. In fact my mum says I have a giggle that is infectious (although I don’t know how because laughs can’t be infectious can they?")

"People think I want to control things. For a second just picture how it feels not be able to predict what is going to happen next, and how out of control this would make you feel. And maybe then you will realise why I feel the need for control or routine."

"I struggle to see the bigger picture of what’s happening around me and seem like I am in my own world, and people thing I am ignoring them. Just remember that my world is rich and full of intense experiences. I see and feel things so vividly that sometimes it can be hard for me to switch my focus to anything else."

"Sometimes people think I am rude or that I don’t care about other people’s feelings. Try and keep in your mind that to me people’s rules are unwritten, confusing and mysterious. Imagine not being able to understand how other people feel, what they could be thinking or even that they are giving me clues about their emotions by their body language. It’s not that I don’t care, I just don’t experience emotions like you do."

                                                   Just imagine.....

How would you feel if you had a really creative mind full of amazing ideas but no one recognised your potential just because you didn’t have the words?

How would you feel if you had so much love to give, but people didn’t know because they didn’t enter your world to feel it for themselves?

How would you feel if you could see the beauty in the things other people ignored and people dismissed the things you were passionate about?

How would you feel if people wanted to change you, and said that the things you like to do weren’t socially acceptable?

How would you feel living in a world that doesn’t recognise the potential that lies within you because of your label?

                                        
Imagine… just for a minute put yourself in his shoes!

How frustrating it must it all be at times for him?

If people don’t learn to see things from a different perspective; my son’s perspective, then they will never see the wonderful talents that lie within him. They will never see beyond the challenges he faces and the labels he carries, to view what he has to offer the world.

And this is why I do what I do. This is why I fight so hard to raise awareness, understanding and acceptance. No matter what day or month it is. Because autism is part of who he is, but not all that he is.

I want to open the window on perspective and blow away the cobwebs of ignorance. So that my son can hopefully live in a world that is far less confusing, much more aware, and has a greater level of acceptance than ever before.

It’s all just a matter of perspective.

A letter to my mother

As I watch my own daughter delicately dancing between the innocence of her childhood days, and the complexities of womanhood. I can’t help but wonder at times, how I have reached my mid thirties with such speed.

How did I change from being that innocent little girl with goofy teeth and plaits, to a fully-fledged grown up with an overdraft? When did I become old enough to book my own doctors’ appointments without needing you to hold my hand?

I have grown increasingly aware of how you must have felt when I was a teenager myself, learning to let me go and find my own path. Quietly allowing me make my own mistakes without passing any judgement. Always being there for me no matter what ungodly hour I would call home for a lift. No matter what, you always put me first. You put your life on hold for me and I took that for granted when I was younger.

I can see that now.

Because all of a sudden, I am the mother.

I am the one learning to compromise with my own teenage daughter, and learning to let her go. I am the one giving up my job to care for my autistic son, putting my own life on hold for now. It’s my turn to be the grown up.

Yet today; although you may not have known it, for the briefest of moments I was once again just your little girl.

Over lunch you knew something was wrong with me, no matter how often I tried to reassure. Your piercing glare made me wriggle in my seat because no matter how much of a front I portray to other people, you can always see straight through the facade.

Outwardly I am in control of my life at all times. I am the mum who’s got it all sorted and doesn’t need anyone’s support. But really that couldn’t be further from the truth! Because the wall I have built to protect myself sometimes can’t take the strain, the strain that is etched on my face and you can see it.

So I cracked, and the tears streamed. You leapt across the table squashing your plate of fish and chips to hug me, whilst my sniffling awkwardly interrupted the polite chatter of the busy restaurant.

And right then in that moment I was your little girl once more. Your little girl that needed a cuddle from her mother, for no other reason than it made it me feel better. The visions and memories flooded back to a simpler time when I would pass away the hours clip clopping around in your high heels without a care in the world.  You always made me feel better when I was little, you made me feel safe and secure and like the world was mine for the taking, it was a magical time.

I didn’t need you to do anything in that precise moment other than simply be there for me.

So mum please know you can’t make all my problems go away, it’s just not possible. Don’t ever feel guilty that you should be doing more to help me. You do more for me than you will ever know.

Because despite how much I have grown up, I will always be your little girl and I will always need you by my side. To support me on the dark days and to show me what it means to love unconditionally.

And most importantly, I will always need you to know when I’m pretending that everything is OK and give me that cuddle that makes me feel like I am 5 again. So for that brief moment I can feel safe and secure in your arms - that’s true magic that only a mothers love can create.

No matter how old I am I will always need you, and if I can be half the woman you were as I watch my own children grow up,  I will know that I have spent my life being the best mother I possibly can. 

From your little (grown up) girl xx

Autism and self injury

I can remember like it was yesterday the day we were told that my son had Autism, despite it being a few years ago now. And I have to say that even though I knew in my gut that the doctor was going to confirm my feelings (and in many ways wanting that one word to come out of her mouth after years of feeling judged as a parent) that when it actually happened, well it hit me like a tonne of bricks.

I didn’t know how to feel, what to do, and how to react.  I was numb.

The hubby and I went to the pub on our way home and we just sat there, speechless. I can even remember the food I ordered and didn’t eat! (Welsh rarebit.)

In the days that followed it began to slowly sink in, and really nothing had changed to be honest. Except deep down I felt a sense of relief that I had been right all along. And at the end of the day it was just a word. My son was no different, he was still him. Life ticked on as usual.

But what I did next I presume all parents do at one time or another - I found myself sat with the laptop on my knee, and I googled Autism. Despite having many years of experience working with children on the spectrum – well I just couldn’t help myself.

And oh my goodness what a load of crap there is out there on the internet. It’s enough to scare parents half to death. So much misinformation and ignorance to be found around every corner. I think if I had took notice of everything I read I would never have stepped out of the house with my son ever again. As it made me want to swaddle him up in bubble wrap to protect him from all the ignorance out there.

I also vividly recall sort of ticking things off like a list; well yeah he does this, and I suppose sometimes he does that too, oh but no not that - he never does that I said to myself!

And I remember stumbling across self-injurious behaviour and thinking thank God he’s never done that. Children who do that must be really ‘severe.’

Well, I was wrong!

That’s the thing about Autism I have since learned from my son. Autism kind of moves and shifts, it confuses and lulls you into a false sense of security. Its 'symptoms' can increase and decrease according to its environment. And ‘High Functioning’ didn’t mean my son got a free ticket to bypass the darker, more worrying and far less talked about sides to Autism – like self-injury and anxiety.

In fact I think the label he was given that day was highly misleading in many ways. Because I soon realised that his anxiety would increase to such a pitch that it would almost cripple him. Please don’t get me wrong I love my son more than life itself. Yes he is Autistic and I don’t want to change who he is - he is unique and wonderful I am his biggest fan believe me. But if you told me if I could lessen his anxiety somehow then my reply would have to be - where do I sign up? And if the doctor had told me that one day in the not so distant future my son would be so anxious about school that he would scratch his hand so badly it would bleed, then I would have cried and blubbered then and there in her office. Because no one wants that for their child, Autism or not!

So to my horror last year we found ourselves drowning in an ever spiralling whirlpool of anxiety that led my little man to become so desperate that he was indeed driven to self-injure at school. This vicious cycle engulfed him like huge waves lapping on the shore, and I just couldn’t drag him from the darkness. Day after day each new school day led to more and more anxiety, and so it went on - deeper and deeper he seemed to be falling and to my despair I could feel him slipping away from me. I was clinging onto him with my fingernails desperate not to let him go. He’s my baby boy, and every time he wanted to hurt himself it broke my heart. If would have swapped places with him in a heartbeat if I could have, I just wanted to take his pain away.

He became so consumed by his anxiety that he wasn’t capable of learning anything at school. Just the process of going to school was literally draining him. So we had to re assess everything and modify his environment drastically. His anxiety had shifted his world until he was unrecognisable as my little man.  He would pace around the room like a trapped tiger in a zoo.

So we put his world on PAUSE

It was a long and slow journey to recovery, I mean months not weeks! But we had fun- we went swimming and dive bombed in the deep end. We walked the dogs and got wet and muddy, we baked cakes making a right old mess of the kitchen. And yes we learned maths and English - but in his own way, not mine - and slowly day by day he began to laugh and smile a little more each day.

He had started to push against the wave of anxiety that had been engulfing him, until thankfully his hands healed and he got better. Until now, well now it’s just a bad memory. He is at a new school full time and is genuinely happy. So his Autism has shifted again. He approaches things with less negativity because he’s happy.

I knew all along what my son needed to do to get better, the world needed to mould around him. And the people around him needed to be more flexible, following his lead,  and truly accepting him for who he was. Then, and only then he would trust them to keep him safe.

But I am ashamed to admit this, at times I let my feelings be ignored and overlooked because I kept quiet when I should have been shouting from the rooftops. I tried to keep the peace, and I Iet others take the lead in meetings. I came away with regret for not speaking up more. As his mum it was my job to be his voice, to be heard and to be taken seriously - despite the hassle it would bring my way. I had to learn to put that all to the back of my mind, and shout out louder than them to get his needs met. I learnt this the hard way, I got there eventually after a lot of soul searching and tears. But that’s what us mums do, isn’t it. We would do anything for our kids -  we slap on our make up, notepad and pen underarm and ruffle a few feathers!

The whole experience led me to realise that too often our kids are bent so much to fit into our world that they simply snap under the pressure, and this is where they encounter so many problems. Because too often the traditional mainstream education system our kids find themselves in is just so inflexible for kids like my son.

And now I will never take anything for granted or make assumptions about Autism ever again. I will never again think my son isn’t ‘severe’ enough to be effected like that. Self-harm/self-injury effect 50% children with Autism - including my son. And I strongly believe we should be talking about this more than we do. It shouldn’t be something that is only discussed in the GP surgery or at CAMHS.

So as hard as writing this has been, I have shared our story hoping it may have helped you. Don’t let your child be bent to snapping point like I did. It’s truly my biggest regret.

Mums and dads out there be strong at those meetings, be proud that you are brave enough to be your child’s voice amongst a room of professionals. Ruffle feathers if needs be to get your child the education they deserve. One that embraces their differences and moulds their learning around them.

We know what our kids need, we are ‘professionals’ in our own children. So believe in yourself parents and fight against the tide. My son is proof that there is always a light at the end of the tunnel. Our kids have so much to teach us about living in the moment, that the dark days can become distant memories I promise. And I am learning that my son has far more to teach me than sitting down and googling Autism on my laptop any day of the week, all I have to do is learn from him and be strong!