Seeing beyond the behaviour

Behaviour

Having autism means that I can find it difficult to express myself. I am on high alert most of the time because the world I live in can be very confusing for me. So my emotions can consume me and I can appear to go from 0-60 very quickly.

But think of my behaviour it as if it was an iceberg.

There is so much happening inside me that you cant see, that it can appear to you like I explode out of nowhere. But my behaviour is often my way to communicate to you that something is wrong.

I cant always tell you how I feel when I feel overwhelmed. If you look for clues and try to understand what is happening in my world you can usually work out what could be causing my distress....

If I am crying at the school gates and my mum can’t get me in through the school door Maybe I don’t know what’s happening at school today. Maybe all I need is for someone to tell me step by step what my day will look like.

If I am pacing up and down the room It might be my way of calming myself down. I am probably stressed and anxious and the adrenalin in my body is building higher and higher. If you push me at this point I may lash out or run away so give me time and space

If I am chewing on my sleeve Chewing on things can help me concentrate and focus. So that’s why I do it. Don’t tell me off, give me an alternative such as a chew bracelet or gum.

If I scribble all over my work I could have really low self-esteem or find the interaction that comes with praise difficult to handle. I don’t know what to say or do in response.

If I run down the corridor I could feel trapped and panic, so my natural instinct is to run away or lash out and I don’t want to hurt anyone so running away to escape the situation is my only option.

If I lash out I probably feel backed into a corner with no escape, I didn’t mean to hurt you but I need you to give me some space.

If I look at the work in front of me or refuse to do something It’s probably because I don’t understand it, I am afraid to have a go or it’s not clear enough. I need to see a clear beginning, middle and end. If it is too vague, open ended or difficult to make sense of my immediate reaction could be to just not do it and refuse.

If I wriggle and fidget on the carpet I could be keeping myself regulated and focussed as the language could be too fast or complex for me to follow and I am starting to switch off. A fiddle toy, reduced language and visual support could help me when I need to focus.

If I put my hands over my ears I am not being rude. It could be my way of shutting out all the distractions that are distressing me.

If I push into someone It could be that I have sensory processing difficulties and I don’t realise how hard I actually pushed, I may have thought I only tapped them.

If I interrupt or don’t answer your question I am not rude, I may not understand the social rules of conversation and don't understand that I have to wait and listen when others are speaking. Make sure you say my name first so I know you are talking to me.

If I take over during games It can mean that I don't know the rules, I can find it hard to see things from your point of view and I can struggle with the concept of losing.

                                                      You can help me by-

• Keeping your language clear, slow and concise
• You can give me some space
• Acknowledge and respect how I am feeling
• Provide me with an escape from the situation
• Make sure I know what is happening and what to expect
• Not seeing my behaviour as naughty and avoiding negative language
• Seeing things from my perspective

Autism acceptance month A-Z (April 2016)

Autism acceptance

 Acceptance

                                     

For me April is a great way to raise awareness, but to be honest running a page and having a child on the spectrum means that autism doesn't just simply begin and end in April for us.

We live it day in day out.

And awareness is great, don't get me wrong I am all for autism awareness... but what's even more important to me and my son, what will make more of an impact on our lives day to day, is true acceptance.

Acceptance of his needs, acceptance of  his challenges, acceptance of our family and most importantly acceptance of him!

But what does that really mean? Why isn't awareness enough? Well on its own awareness just means that for a few days a year people change their profile pictures and the words 'autism awareness' pop up on Facebook... then its gone.

But we are still here.

Facing the daily battles of living in a world that can see autism as a challenge.

So what then for us?

Yes people may now be more aware of the word autism from awareness month, but do they truly understand anymore about autism? Will it have made an impact on my sons life at all?

To me acceptance means much more than simply raising awareness... It means educating myself on what being autistic feels like by listening to adults on the spectrum. Learning from them and respecting their needs and wishes.

It means taking the time to understand the world through my sons eyes. Looking beyond his behaviour to see what he's is telling me.

It means not trying to change him into something that he's isn't. Embracing his differences and never seeing him as less.

It means accommodating his needs, being flexible and seeing what he can do instead of what he cant.

It means supporting other families who are new to autism and letting them know that its not all as bad as it may seem at first.

It means celebrating achievements and diversity within the autism community.

Acceptance means fighting for an education system that isn't one size fits all. A system that understands autism, and embraces our children's talents.

Its about providing adequate access to services and facilities for children and their families.

It means being there for a new mum who is worried about her child, being a listening ear or simply a word of encouragement.

It means recognising the impact autism has on families and supporting them through the minefield of red tape and politics.

It means more than just acceptance that autism exists.

So that is why  throughout April I will be doing my bit to raise awareness like everyone else, but I will also be challenging you to do more than simply change your profile picture. I will be asking you to think in ways you may not have before, and asking you to see things from a new perspective.

I will be sharing the voices of adults on the spectrum, and encouraging you to really begin to understand what living with autism really means by sharing my A-Z of autism acceptance.

Autism acceptance month A-Z (April 2016)

The Tribe

Guest Blog

by

Lottie Parish founder of 'Autism, a jug of coffee and a Dinosaur'

Finding people that you can relate to on this journey is so important, and in this guest blog written by my good friend Lottie from over at  'Autism, a jug of coffee and a Dinosaur'  she talks about how she found comfort in the friends she found online. Lottie is a buy mum two boys, and I love how she writes with such honesty, that's why I asked her to share a story for you all.... and I know you will love her too!

The Tribe

I was once told that only special people get chosen to be special needs parents.  In my opinion that is crap.  We become special needs parents because it is something that happens randomly; it nothing we do and nothing that a higher power decides.  Its life and it’s something as a parent we have to come to terms with, deal with and then get on with. 

Some people find it easier than others to except that their gorgeous bundle has extra needs.  It is an extremely hard and emotional rollercoaster.  But your child is your child.  By letting yourself fall apart isn’t going to change your child.  It is not going to make the diagnosis go away and at the end of the day, falling apart will not help you or your bundle. 

This may sound really harsh and unkind, I promise I don’t mean it to.  But for every day that we don’t accept things as a parent is another day we are not truly supporting our child.  A diagnosis is by no means the end of the world.  It is a signpost to help point us in the right direction, to begin to start to understand the road we are on.  I will never say the road is easy.  It’s bloody hard and most of the time it’s up hill, bendy and bumpy but it can also be amazing.

I never cried or fell apart when I found out that my son was autistic; I already knew and I think I was just glad that finally we had an official diagnoses so we could start getting the help and support both my son and our family needed.  However I would be lying if I said, I had never shed tears; I have shed many, many tears.  It’s bloody hard having a child with autism.  You fight battles that you never dreamed you would have to fight.  You fight for help, support and just to keep yourself and family together.  It is never ending, totally consuming and completely exhausting.

Friends and family really do try and get it but it’s impossible for them; you can only truly get it, if you are living it.   I survive the shit and heartache by being able to share it with people who just understand it.  This is The Tribe. We all need one and the special needs Tribe is a tribe that just cannot be beaten. 

It is not always easy to find your tribe.  But it’s so important that you.  It is all too easy to let yourself get lost in the thick mist of parenting your child and focusing all your energy on everyone else but yourself.  I have found that I spend little, to no time on myself anymore.  I rarely see my old friends and find it much easier to stay at home than risk going out, which can all too easily turn into a horrendous nightmare of survival and wishing I had never bothered leaving the house.

But I have discovered The Tribe and it is amazing.  You don’t need to look far for it.  They are there on Facebook, blogging away, setting up get togethers and running support groups.  We are not alone, and we don’t need to do this alone.  If you haven’t found The Tribe yet, go and look.  They are all there, waiting to lend an ear, have a chat and share their crazy life with you. 

I had not realised until very recently that I was part of The Tribe.  It had never really occurred to me there was one.   It took a friend to point it out to me.  And I am so glad she did.  We all feel alone at times, especially at the beginning of our long rollercoaster of a ride, but we aren’t.  If you share the good, bad and ugly with someone else who truly understands, you will stop worrying quite so much and start believing that you aren’t going mad, and most importantly that you are doing a pretty amazing job rising your crazy bundle of joy!

Lottie Parish Founder of -Autism, a jug of coffee and a Dinosaur

Lottie Parish is a fulltime mum to her two gorgeous boys, one of which is on the Autism Spectrum and has Sensory Processing Disorder.  Lottie spends her time looking after her slightly wild and crazy family whilst trying to remain sane.  She is on a consent mission to help raise awareness of autism; writing her blog and running her Facebook page.  When time allows she loves to design and weave fabric on her much loved loom. 

Follow Lottie's story on https://familylifeandautism.wordpress.com/

And join her Facebook page at https://www.facebook.com/autismwithajugofcoffeetogo/?fref=ts

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!

Screen time vs Outdoor time

As a mum to one hormonal ‘I hate the world’ teenager and two pre- teens that can find their way around PowerPoint far better than I ever can, over the years I would often find myself pondering on the whole debate of how much screen time is acceptable for our kids these days? Or was the new IPAD he got for Christmas ruining my sons social skills. And more to the point I would wonder what on earth Snap-chat actually was. Because I just don’t get it at all, I mean the picture disappears-what’s that all about then?!

But seriously these days all you have to do is log onto any social media account (some irony there) to be told our kids are spending too much time on phones and laptops. It was yet another worry to add to the list that was special needs parenthood.

But then as quick as my mind had drifted to ‘I am such a bad parent’ mode it soon snapped back to reality as my kids would scream from the top of the stairs that the Wi-Fi wasn’t working again. And I would find myself cursing the stupid glitchy fibre optic ‘thingy -me –jig’ under my breath as I was fiddling with plugs and wires at the back of the box having no clue what on earth I was doing. Until eventually someone shouted “it’s on again” and I would breathe a sigh of relief!

All three of my kids I am embarrassed to admit are far more tech savvy than me. And my son, who is my middle child, is like any typical pre-teen in many ways I suppose. He loves his PlayStation, his IPAD and watching Netflix. But where the difference lies is that my son tends to dive head first into the world of technology- completely immersing himself in all things online, and if we let him he wouldn’t surface for days at a time. Whereas my daughters are a bit more balanced in their approach to all things ‘dotcom.’

My son has Autism so for him the world of Minecraft and YouTube offers a safe and predictable world in which he doesn’t need to worry about complex social interactions and awkward conversations which he finds so challenging. So it’s easy to see why he loves gaming so much.

And this used to create a world of worry for me.

Because like I said, if we let him he would never leave the sanctuary of his gaming chair. So this posed a problem to us - we had to find a way of balancing his need for feeling safe in his world of gaming, whilst still being exposed to experiences of the real world around him.

Despite all my worries we could see how gaming was helping my son. It kind of reset him when he was anxious or overwhelmed. He would visibly calm instantly once in his room on his favourite game. And we could see that it was also helping him make friendships. Obviously that’s something we have to closely monitor, but I couldn’t believe it was the same boy sometimes when I would stand listening to him with my ear pressed against his door, chatting with his friend from school.

It actually made me cry with happiness one day to hear him giggling away so free and easy with a classmate. Laughing about what had happened that day at school, whilst building an online Minecraft world together. All this despite being in separate places. It made me cry as it had connected him to his friend in a really meaningful and positive way, and it was lovely to hear him so happy and relaxed.

If I’m honest I think it’s also taught him about losing, perseverance, game play, strategy, and problem solving too. And even how to keep calm when the Wi-Fi goes as it often seems to go at the most crucial part of his game (well at least try to keep calm anyway, it’s a work in progress that one!)

You see Gaming is my son’s ‘thing,’ his special interest or obsession whatever you want to call it. He is good at it and really enjoys it. So to stop him from doing it would have been be unfair of me. Heck I mean if someone told me I had to stop drinking coffee, or could never sneakily binge watch Netflix while the kids were at school all day again, well I think I would cry as it’s what gets me through the day sometimes.

So we had to learn and adapt to his passion and use it to our advantage. After years of fumbling our way around, and forcing him to comply with our view of the world, stressing out about it all -which believe me was no fun for any of us, we needed to change our approach.  And so we adjusted our view and learned to see things through his eyes. We compromised with him and began to treat his special interest with the respect it deserved because it’s what makes him who he is.

Now we timetable the parts of his day that need him to be sociable, he attends full time school and enjoys walking the dogs with me. He enjoys days out and family holidays, and he loves exploring the woods (he is an excellent tree climber) but then we always allow him to recoup afterwards in the comfort and sanctuary of his room. All experiences are vital for my son so we work hard to keep the balance right. Don’t get me wrong sometimes it’s hard to maintain the balance as kids will be kids- whether they are Autistic or not, and will always try to push boundaries. And we have days where he is reluctant to leave the house- but we usually always manage to find a hook to grab his interest in the activity and he copes better that way, otherwise he just doesn’t see the point.

In the school holidays we have found that a day in, and then a day out tends to work best for us. It gives him chance to spend quality time with us all, and experience new places and people. But all that takes its toll on his fragile nervous system, so a day in the house with reduced demands on his computer the following day helps him to process all the sights, sounds and smells he experienced, whilst also giving him (and us) time to prepare for the next day’s activities.

I think we have found our way of managing the world of tech and gaming that works for our family, regardless of all the conflicting advice out there. I have learned to not overthink things too much. And I am happier for it.  As long as he is safe online and it doesn’t stop him accessing the world around him, I am happy to encourage and respect his special interests.

I have had to learn not to care what people may think about our choices. Because each family is different. Each situation is unique, and nobody has the right to tell me that my choices are wrong. Some people may not agree with my parenting approach and that’s fine- they don’t have to because they are not living my life. It works for us and I have a much happier and engaged son because if it. And who knows where it will lead him in the future as a career option. Maybe the next Bill Gates could live right here in my house.

So for now I am happy that he has found something he can excel at. Something that I can use to motivate him, something that I can use as leverage, and something that teaches him so much. For us it’s all about balance and acceptance, and working with him not against him!

P.S….

So just before I leave you, get this - last month I treated myself to a broadband upgrade and booster pack. I know- how exciting! So no more glitchy Netflix for me, and no more screaming kids at the top of the stairs...Happy days!

(Well us parents deserve a treat every now and again don’t we? Who said we need hair do’s and fancy nights out in posh restaurants- A take away pizza, my comfy slippers, Wi-Fi that works and three happy kids is all the treat I’ll ever need.)

This was written as a Guest Post for Family Fund click here for the link-  https://www.familyfund.org.uk/blog/screen-time-vs-outdoor-time

How we can help with Back to School anxiety

The first day back to school after a break can be a real cause of heightened anxiety for many children, including not only my son who has autism but also for his two sisters - who just worry a lot.

You know the feeling, you have had a lovely few weeks off work and the day of return is steaming at you like a train – you can’t escape it or ignore it because it’s going to happen. And no matter how much you actually may like work you still worry about it. But we can think ahead and realise that no matter how much we worry, after a couple of hours back in the saddle it will feel like we have never been away.

But for our kids this kind of reasoning is very hard to do, especially if you have autism and your brain processes things differently.

You see our kid’s nervous systems are on constant overdrive to process all the sensory information that bombards them on a daily basis, and schools are often places where they have to work even harder to keep themselves regulated.  The pace of learning, the noises, the constant social interactions, following unwritten rules, fast language, and busy rooms can all increase their anxiety levels.

For many children on the autism spectrum this high level of anxiety is something they learn to live with every-day, but it can make them feel really confused, vulnerable and exhausted. These feelings can become overwhelming for many kids, and can ultimately lead to huge school related anxiety and in some cases, like with my son, school refusal.  

So I know from experience that there will be many families out there today, with the end of the school holidays fast approaching, that feel like they are treading on egg shells at home because their children are on the edge. They are so anxious about returning to school that the slightest thing sets them off - a wrong word or a brush past them on the stairs and they are in full meltdown mode from what appears to be like out of nowhere!

Jekyll and Hyde I used to call my son.

But really it’s not out of nowhere if we think about it - it’s just we can’t see what’s going on inside their little minds, and often they can’t tell us.

Inside they are literally bubbling with stress chemicals so they are on the edge and only the slightest little push sends them to lash out or want to run a way and escape to the safety their bedrooms.

So what can we do to help our kids, and how can we best get through the days leading up to the return to school when our children have such high anxiety?

Here are some ideas you may like to try -

          (Many of these ideas will be relevant  for school to use too when a pupil is very anxious)

·       Reduce demands – Wherever possible don’t get into direct confrontation, give your child choices as when children become really anxious they can become oppositional at even the smallest of tasks.

·       Keep language slow, calm and positive.

·       Let them spend some of the day doing their favourite activity if it helps keep them calm, some children may need to 'stim' more to self-regulate, while some may want to retreat and limit interaction – respect this and don’t force things too much when your child is like this. When they are doing something they like it releases the feel good chemical which helps relax their central nervous system.

·       Relaxation can work for many children – calming music, dimming the light, a hand massage, aromatherapy etc. can have a really calming effect on anxious children.

·       Being outside in nature helps my son – walking the dogs/ climbing a tree/ a walk  could all help.

·       Make sure the day is structured even if it’s a day in the house  - break it up into chunks using a visual timetable.

·       Ensure you have the relevant information from school about what is happening that first day back – it may mean contacting the teacher to get the information beforehand if necessary if they don’t volunteer the information without a little nudge.

·       Use this information to map out their first day back in school, as when your child is anxious any uncertainty will increase their panic. Write down what they will be doing – use visuals if that helps, all this will drastically reduce your child’s anxiety. Of course you NEED this information from school in order to do this, and its vital schools help you by recognising the importance of giving home the relevant information beforehand.

·      Keep your day low key and warn family that the day before school starts probably isn’t the best day to do an unannounced visit – as much as your child loves them he may just not be in the right frame of mind to deal with a house full when he is feeling so delicate.

·      For some children it can help them label their feelings using a scale. http://www.autismempowerment.org/wp-content/uploads/2013/12/Incredible-5-Point-Scale-Fact-Sheet-rev.pdf

·       Keep any directions or instructions really simple and concrete using visuals to reinforce your language.

·       Heavy muscle work can help calm children – so riding a bike, jumping on the trampoline or sofa/ swimming/ swinging etc..

·       Have lots of sensory activities at the ready such as fiddle toys/ lights / messy play/ weighted blanket for your child to use whenever they want throughout day.

·       A transition activity ready at school for your child that they are happy and prepared for can help some children settle better at the beginning of the day. It could be that they sharpen the pencils every day when they arrive, or that they arrive 5 minutes early and don’t have to queue in the playground with everyone else. School should be open to any ideas that can help the transition from home and school become easier for our children.

·        It’s also vital that you have time to pass on any info they may need to know like poor sleep etc. (this could be written in a home school book). If your child knows you are going to ensure you let the teacher know of anything that has been an issue for them it can help them feel calmer. My son often used to worry that this teacher wouldn’t know something, so just by me having that quick handover with his TA in the morning really put his mind at rest. It doesn’t have to mean you will spend 10 minutes each morning with the teacher as we all know that it’s not possible - but it is SO vital that the communication is open between home and school.

       AS WHAT HAPPENS AT HOME DIRECTLY IMPACTS WHAT HAPPENS AT SCHOOL, AND VISA VERSA.

·       And finally maybe have a motivating activity for them timetabled for their first day when they get back home - it could be a treat tea or favourite movie to look forward to when they get back for doing so well at controlling their anxiety.

                                        And most importantly please give yourself some time too.

It’s hard on everyone in the family when you have a child with high anxiety. Especially the one who is often on the receiving end of the meltdown. Just as your child needs to be given time to recharge once they have reached school and start their day, so do you!

I know from personal experience that when your child is so upset and anxious you feel every inch of the emotions with them - and it takes its toll. You too will have stress chemicals pumping through your body so don’t ignore it- look after yourself. Give your own body time to recover, even if it's just a walk around the block before you dash off to do the weekly shop.  

                                                Please -  because you are important too!

Half Term crazy days

It’s wet and dreary day here today, not the kind of day you want to venture out in really  The kids are pretty well settled, and I am catching up on all the EastEnders that I have missed this last week (I should be doing the cleaning really but what’s the point when the kids aren’t back in school ‘til Monday so it will only get messy again!) So instead of hoovering I thought I would make the most of the current peace in the house and give you a quick update and well - just say hi really.

So it’s been half term week here for us and as ever it’s been a pretty eventful one! We’ve had wet days, fun days, and darn right crazy days I can tell you, as I am sure you have too. We had timetabled our week and have pretty much stuck to it as planned. But despite all the organisation things just didn’t always work out to plan.

We had a meal in a pub that ended in me and little man leaving early amongst stares and glances from other diners, then the next day we never even made it in the water park as it was too busy, oh and we had some bowling shoes being lobbed across the alley because he was so anxious about the game (luckily it narrowly missed the ladies head in the aisle next to us!)

But we have also had lots of laughter, ‘knock- knock’ jokes in abundance, coping with losing at bowling was an achievement. And joy listening to him laugh out loud at the Alvin and the Chipmunks film. I love it when he belly laughs - it’s the best sound ever.

And the times it went wrong were entirely our fault really. You see we forgot ourselves a little I think and we thought we could rock up to the water park like every other family in the North West. Ha Ha what the heck were we thinking? We soon realised our mistake and drove away with our tails in-between or legs realising how naïve we have been, and that’s with all our years’ experience behind us! We’re human and we make mistakes.

With all the organisation and forward planning in the world things can still go wrong believe me!

We may not have made it to the museums or water parks like every other ‘normal’ family out there this half term. And we may have cleared the restaurant when we decided to turn up with our crazy family for tea. But so what! Once upon a time that would have really bothered me I have to admit. But not anymore, I can’t let it because it would take me under if I did. Because we are just not like every other family out there. We are a special family and we need to accept that it means we have to do things a little differently.

But we have fun in our own way.

And as much as I would like go to the places everyone else seems to go in the school holidays - we just can’t. They always involve too much queueing, too much stress and let’s be honest most of the time its just too expensive for a family like ours - only to spend most of it stuck in the corner of the room not accessing any of it anyway!

So we admit defeat and think outside the box a bit, or find the quieter times to go to these places. And hopefully more and more places will start to make it easier for families like ours by allowing us access at quieter times – we can but hope eh!

But in the meantime if like us you made a rooky mistake this half term that ended in a meltdown for you or your kids, please don’t beat yourself up about it. Remember we’re all human and so much of what we do as parents is trial and error.

So what if a day out for us is at the local pool not the water park, or a meal in a pub doesn’t go quite to plan, I say well done for even attempting it! 

Please folks...don’t fall prey to the stares of strangers, or pressure to be like everyone else. I've been there and worn the T shirt so many times believe me and its not worth the stress!

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Dear Mums in the Playground

Dear Mums in the Playground,

You may not know me well but I was that mum that skulked past you all with my head hiding under my umbrella, or under my hood just to avoid having to talk to you for many years.

I was that mum that the class teacher always wanted to come and talk to at the end of the day, with a knowing look that something had happened that she needed to tell me about.

I was that mum whose child who stopped getting invited to parties.

I was that mum that never came to the PTA meetings or mums nights out, who wasn’t part of any mums ‘group’.

I was that mum who was often running late in the mornings, looking hassled and exhausted at drop off time so never had the time to say hello to you.

I was that mum who ‘let’ her child hit her whilst trying to get him in through the school door in the mornings kicking and screaming.

I was that mum who you would whisper about to each other that should discipline her child better.

That’s me. I was that mum.

The reason for my writing this today is to tell you what I should have said back then, in the playground, that I had grown tired of feeling like an outsider when I stood by myself day after day. I was tired of feeling your eyes watching me when the teacher came out to speak to me yet again, and that things got so tricky for my son that he had to leave.  

I felt alone because I was not one of you. I didn’t fit into your ‘group.’ But I really did want to be your friend. I wanted to meet for morning coffees and chat about where we were going on holiday that summer. But I couldn’t- and not for the reasons you may think.

You see I was that parent who the teacher always wanted to talk to. But not because my child was naughty as I imagined you were thinking. It was because he found mainstream school incredibly tough. And this lead to his behaviour being deemed as challenging by his teachers, because he couldn’t follow their instructions or fit in with the rest of the class.

And I can understand why my child never got invited to parties. It’s not that he didn’t want to attend your child’s party when we declined, it’s because he just found it all too overwhelming and would often get upset when he did go. So we stopped saying yes, and then the invites inevitably stopped coming.

And yes I never made it to PTA meetings. Not because I didn’t want to, but because usually I was busy filling in forms, attending meetings with someone in my sons team, at a  CAMHS appointment, or having to explain myself to yet another professional that was looking at my parenting as my son didn’t have a diagnosis at this point.

And I want to tell you that the reason I was always in a rush in the mornings was because my child had severe school related anxiety. Some mornings it could take me 30 minutes just to get him to put one sock on. He needed routines, and visuals, and social stories just for me to get him through the school gates. I had to drive the same way each day, and pray there would be no traffic as that made his anxiety worse. And when it was non-uniform day or cake sale day – well those days were even trickier for us to get to school, it wasn’t that we didn’t want to join in, it was just too much for him to cope with.

Thinking back to that time you saw my son so anxious and so upset that he felt the need to run away and kick the wall when the fire alarm was going off at drop off time. In that busy playground you all stood and watched us. I had to stop him from escaping, so he lashed out as a way of protecting himself. No one came to help us, no one came to see if I was OK. I was deeply upset that day because I worried what you all thought of us.

I felt isolated and alone. But I held it together until I had reached the sanctuary of my car and then found myself crying uncontrollably into the steering wheel.

We now know that my son has Autism.

For a long time I felt judged, judged by parents, judged by school, judged by professionals and I was that mum who walked with her head down. I was worn down and defencive as a result of all the stress. I became too tired to face anyone so it became easier to avoid you. To walk past you in the playground and hide behind my umbrella.

But I am now several years down the line and no longer have to do the school playground thing as my son attends a school that best meets his individual needs, which means going to a school in a different area -so he gets a taxi there and back.

That’s why I left so abruptly last year with no explanation or goodbye. He needed to leave as his anxiety had consumed him. And I couldn’t face telling any of you.

I know any judgements you made; if you made any at all, were all due to the fact that you didn’t understand. I mean how could you if I kept my head down each day and didn’t attempt to let any of you into my world. I never gave you the chance.

I did want to -  believe me I did, I just didn’t have the energy as I was fighting for my son on so many different fronts at the time I was barely keeping my head above the water. And for that I am sorry.

And now- well now I have found my ‘group’. I may not have felt like I fitted in on the playground but I have found a whole world of on-line support out there of fellow special needs mums. With them I don’t have to explain why my son my son finds school so hard because they live it each day like me. So it’s natural and comfortable with them- but if I’m honest sometimes going out of our comfort zone does us good every now and again. 

You see I was guilty as anyone all those years in the playground- because I judged you. Those mums will never understand, or they’re watching me again I would tell myself, so I kept my distance and that was wrong of me. I assumed you were judging me, but I never really took the time to find out.

No mum should ever walk with her head down, because were all doing the same job. It’s tough and we all want what’s best for our kids, special needs or not.

And we special needs mums have just as much to offer as a friend, and as a member of the school community as anyone else, we just have to make adaptions that all.

So if you recognise some of yourself in my story- be strong, be brave and be honest, don’t be like me by and leave it until it’s too late. Take those brave strides across the concrete and hopscotch and talk to teach other. You may be surprised what lies behind the façade as there is always more than meets the eye.  

And who knows what kind of friendship can blossom from huddling together under the shelter of a shared umbrella on a soggy wet afternoon in January- You won’t know, unless you try!

This blog was written as a Guest Blog on Kathy Brodie Early Years Training and Coaching, follow the link below to visit her Website-

http://www.kathybrodie.com/guest-post/dear-mums/