Tuesday, 29 March 2016

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.







Tuesday, 15 March 2016

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


Tuesday, 1 March 2016

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!

Tuesday, 23 February 2016

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


Sunday, 21 February 2016

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!

Saturday, 20 February 2016

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!







Friday, 5 February 2016

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/

Friday, 22 January 2016

Mum why do you look so sad?




“Mum, why do you look so sad?”

This was the question my 10 year old daughter asked me yesterday while we were sat on the sofa sharing a minute of calm in what is normally a pretty hectic mad house.

“Do I? Ah I’m just tired sweetie,” was my mumbled reply. It was a lie. I have depression and was having a really foggy day that day. She looked at me with a sort of puzzled yet knowing look that made me think she didn’t believe a word I was saying. I couldn’t take her gaze any longer so I jumped up quickly asking who wanted a biscuit.

Once in the safety the kitchen I grabbed the biscuit barrel down from the shelf, and it took all my strength not to blubber over the custard creams. Just breath I told myself, don’t cry don’t let the kids see you cry.

You see I thought I had been doing a pretty good job at keeping my depression from the kids. I have been holding things together and taking my tablets like the doctor said. I was getting through each day and gradually starting to feel better.

But my 10 year old daughter saw right through me. I was exposed. She could see a deep sadness etched in my face. Despite my makeup. Despite the home cooked dinner awaiting her after school. Despite the bedtime stories and snuggles we shared that day. She could see me.

It’s a strange thing really when I think about it. No matter how hard I try to paint over the cracks they are there. And people that know me well must be able to see them despite my best effort to hide it all behind my blusher. 

Even my 10 year old daughter sees it.

My depression is part of me, it doesn’t ever go away even when I am having a good phase. It’s always there. It’s etched in my every wrinkle and smile. And she didn’t know what is was, but she saw it.

So I have decided that tonight when she gets home from school we are going to share a slice of cake and I am going to talk to her. I will follow her lead and answer any questions she may have to ask me no matter how awkward I may feel about it. Because I know- that she knows I am hiding myself from her.

And I don’t ever want her to feel that whatever she is going through or however she is feeling is something that should be hidden away from others. My daughter has Dyslexia and this can really affect her self-esteem. So I don’t ever want her to feel that people won’t accept her for being honest with them. Our mental health and hidden challenges should never become something that can be brushed over with makeup like it doesn’t exist.

I am not ashamed of my depression. How can I be? It’s part of what makes me who I am. And in lots of ways it’s really helped me. Because there is real magic in speaking to someone who just gets it. Just understands how you feel and doesn’t need anything in return other than your understanding. It connects people, and it’s very powerful when you can make a difference someone else by sharing your own story. It doesn’t mean we are weak when we say things are tough sometimes, it just means we are human.
She needs to know that in darkness there is always light and true strength of character is shown when we accept and embrace the differences we all have.  She needs to hear the positive things about my depression. She needs to hear I am proud to be me, and maybe then she will be less anxious if she knows that I may look sad sometimes, but I am OK!

Sometimes in life as adults we feel bad when we don’t have all the answers and we want to magically make everything better for our kids, pretend like it is all hunky dory. But I don’t want any of my children to grow up ever feeling ashamed of who they are. I want her to be proud of herself, and proud to overcome any challenges that life throws her way. And I can’t do that by pretending it’s not happening to me in the here and now.

Her innocence yesterday made me realise that I need to be more open with my kids, In order for them to learn to love themselves I have to love me. They need to see that love means opening ourselves up to other people, not hiding how we feel from our loved ones, and being accepted for who you are unconditionally.

My depression will ease- it always does. And it may ravage me again at some point I am certain. But the difference is that next time when my children ask me why I look sad I will be honest with them. I am not ashamed of who I am, and I am going to try my hardest to help my daughter love herself for who she is and never ever to be ashamed of what makes her- well her- whatever that may be.

(This post can can be found on The Mighty)


Saturday, 9 January 2016

Please excuse my appearance I'm still shaking off Christmas

Hi folks

Wanted to pop in and well- say hi really. It's been a crazy few weeks for us all hasn't it, well done for embracing the bonkers that is Christmas in an Autism house /school. And I hope you all managed to get some chill time too. And if it was all just a blur now the kids are all back at school hopefully you can start to recharge a bit- sorry teachers don't mean to rub it in.

It feels a bit weird this 'cos I don't feel like I have done a 'normal' blog post for ages. What with all the Christmas blogs I did, and the deadlines for other publications I have had to get done I've almost gotten out of the habit of writing with no brief to work to, writing just for me and you- so bear with (nod to fellow Miranda fans there) I'll soon get back into the swing of things.

I have to admit the first week in Jan has been a killer in our blumin' household I can tell you. I had this lovely vision of 2016 starting with a bang and being all positivity and renewed energy. Serves me right for wishful thinking doesn't it- I know I know I never learn, things never go to plan!

My girls have been really ill with a virus, so the doc says just suck it up and they'll fight if off themselves. We've had raging temps, hallucinations and emergency 3 am trips to the out of hours half way across town. I've had insomnia for weeks now (it's currently 2.45 in the morning) which is frustrating to say the least, and my hubby has now resorted to sleeping on the sofa downstairs 'cos I've picked up this bug from the girls and he's sick of  being kept awake by my coughing.

I've got a Mount Everest pile of washing to somehow plod through, and my housework- well let's not even go there with that one. To top it off my hair is so grey I could get a bus a bus pass, and my legs can't make an appearance this side of spring for fear of someone reporting a Yeti roaming the streets of Cheshire.

I literally look and feel like I have been dragged through a hedge backwards.

Well actually I almost was- as getting the fattest Christmas tree in the world out of the front door was like dragging myself through a blumin' hedge the other day. Stupidly I attempted this when my hubby was at work. You know like we do us women- we get sick of waiting so we just think "ah it easier to just do it myself!"(I have the spike marks to prove my stupidity.) Oh it was fine getting the fattest tree on the world into the house 'cos it was all nicely wrapped up wasn't it! But when we snipped away the protective layer holding the tree together well it just plopped down its huge belly with a flop and took up half my lounge.

So when the day arrived that I decided I wanted rid - well it looked like a pine needle massacre had taken place in my house as I dragged this tree kicking and screaming across my lounge, the water spilled out everywhere and little man was guiding me around the obstacles in panic as he watched me wrestling the giant Christmas tree half way up the stairs to get it to the right angle to then shove it out the front door with a loud pop as the pressure of the tree stuck in the doorway released and I fell out in a heap on top of it.
                                      (They never seem quite as big out in the field do they?)

Well the spiky little green needles of pain were in every crack and crevice of the house, they were everywhere- and I mean everywhere! I am still finding tiny green devil needles poking out of my bra even today. Waiting for me silently in disguise for days and days and then all of a sudden they strike with no warning. Like when I'm sat in the doctors surgery surrounded by a room of people who don't want to make eye contact. So as discreetly as I could I reached down into my general boob area and had a fumble around. Gotcha you little *bleep*  I blurted out uncontrollably. Only to then look up and see the look of horror in the poor little old lady's face sat opposite me as she wondered what the heck I was doing.

And then this week with immaculate timing as ever little man has sensed my vulnerability, and he has got an idea in his head about a game he wants. And my goodness we all know how persistent our kiddos can be don't we- well we're currently on day 7 of mithering now with numerous meltdowns to boot. Plus it's been raining all week so we have been stuck in the house like a bunch of grumpy snotty gremlins driving each other round the twist every night.

So a great start to 2016 eh ! No matter how many 'blumin feel good blogs I do about New Year the reality never works out as planned does it ha ha!

...I don't bloody believe this as I just looked across my bed as I live and breath, what's lay there? There at the end of my bed taunting me.- a pine needle!
Look...


No matter how hard I try I can't quite shake off Christmas yet. The pine needles and coughs are actually a good reminder to me that it took monumental effort to get us all through the season and it's gonna take a bit longer than the first week of January for me to get back to any kind of normality and fighting fit, never mind positivity and renewed energy!
And trust me I will get all those darn needles- one day soon, just you wait and see. I'll find every last one of you!

But for now my quest needs to be sleep. So it's time for me to switch off and try and get some shut eye now - and if nothing else hopefully I have made you think maybe your week wasn't so bad after all. 'Cos at least you're not being stalked by killer pine needles every hour of the day- I'm off to bed now and I may just sleep with the light on tonight!

                                                                         Mrs M x

Friday, 8 January 2016

Just another New Years Blog


Just...

Such an insignificant little word. One that we never really think about because we just take it for granted. It’s just there in our word bank to pull out whenever we just happen to feel like it. But we don’t even realise we need it so much.

I am just a mum. A busy mum to three wonderful kids. I am just a housewife and a full time carer to my 11 year old son who has Autism. I am just trying my best to get through each day.

But I just reckon it’s such an undervalued word that really doesn’t know its worth. I know this to be true as it’s a word I use all day as I go about my jobs, without even giving it a second thought.

“I’ll just pop the kettle on” I shout upstairs as I am trying to rouse the sleepy heads from their beds every morning. “I’ve just got time to pile a quick wash load in before I do the school run” I think to myself whilst shoving the mountain of the laundry fiercely into our battered old machine “I had just about enough sleep last night to get me through the day” I tell myself as I am scraping my hair into ponytail whilst dashing out of the door clutching the car keys, school bags and trumpet just about still under my arms.

“We should just  make it on time if we hit no traffic” I tell my daughter as she scoffs her cereal bar in her mouth whilst fiddling with the radio stations to find her favourite song on the way to school. And then my day really begins as I just have to dash to the shops, hoover the house, walk the dogs, order the meds, clean the bathroom, make the beds, email school, phone’s Camhs and write a social story for swimming after school. And I then I might just about have time to eat, gulp some cold coffee whilst opening the mail, if I’m lucky.

Before I then wash the pots, polish the table, empty the bins, fill out the DLA forms, iron the shirts and all this whilst trying to catch my sons therapist in her office at some point on the phone today- I’ll just have to keep trying on redial ‘til I catch her.

Then its just about time to head off to do the school pick up and hope there’s no delay so I can get back for my son arriving home in his taxi, who will be ready to just run through the door and have his snack there waiting for him as he does everyday.

And so this just continues day after day after day after day. I just plod on.

You see really I am just like the word just. I am always there. Always holding things together. I just get on with things despite how tired I am or how much I have to do.

But I am not ashamed to say I am more than just a mum. A Mum who’s always there to love and nurture, yes that’s a huge part of what makes me – well me. But I am so much more.

I am Michelle. I am not just a tired thirty something mum with grey hair wearing comfy knickers. I am funny and loyal, and by the way I make a mean chicken curry!  I have depression and yet maintain a deep faith in life and love. I hold my friends and family so dearly that I would do anything to protect them from harm. I enjoy baking and reading and history- and so much more! (I secretly wish I lived in the 40’s and drank from a china tea cup, whilst wearing floral kitten heels and a spotty head scarf too if truth be told.)

However I think I may have fallen into the trap of having so many just moments throughout the day that I take myself for granted now too. I need to reclaim my fabulous justness back!

So as we face this New Year I will try to have just one selfish moment all to myself each day- just for me and no one else!

I will just have half an hour reading a magazine. Or I will just try and drink my coffee hot today. Or “I am just going upstairs for a bubble bath children, the TV is on in the lounge.” Or even better still- we need a few hours together could you just sit for a bit for us darling sister of mine?

This New Year is the time to just say enough is enough, I am more than just a mum, I am more than just a middle aged woman wearing slippers and drinking tea from a chipped Whispa mug from Easter 2002.  And in order to be all those things for everyone else I first need to just to look after me every now and again, even if it’s just for 10 minutes every day. It doesn’t mean I love my kids any less, it just means I love me too.

So let’s stop neglecting that insignificant little word and just care for it- let’s care for ourselves and realise that we are so much more than just our jobs, whatever that may be.  I am gonna start by pulling out my nan's old fine bone china tea set, putting on a bit of lippy and some killer heels  ( well I can sit in them at least ) and just for 10 minutes each morning watch a bit of Philip Schofield on the tele sipping my tea in style!

Now who’s with me- one lump or two?
                                                                    Mrs M x

https://www.familyfund.org.uk/blog/just-another-new-years-blog


Saturday, 2 January 2016

Why I write




My children are my world
My love for them is endless

They make me so proud
And inspire me everyday 

But the world we live in can be so cruel
And some people just don't understand 

So I wrote about
Our ups and downs

Our laughter, our worries, and our joy
In the hope that it will touch others

Others like us
So they know they’re not alone in this

Because it can be so confusing
And maybe, just maybe

Someone who may have judged us before may stop and think to themselves
Ahh now I understand

That we are just a normal family doing our best to muddle through
That I am just a mum doing my best for my kids

And that my son lives in a world that can be so unforgiving and harsh
So I share our story

In the hope that people will view the world through our eyes
And feel the unconditional love form a mother to her son with each word I write

And if it touches even one person in this world

Then to me, it’s all been worthwhile.