‘We are warriors, that’s what we’ve become’

03/08/18

‘I wont let them break me down to dust’

I am a product of all my experiences. They have shaped me and moulded me. They have never controlled me or defined me.

For many years in my life I believed I was ‘never enough’. In recent years this thought has reoccurred in my darkest times. When my friend lost her battle to suicide, when my husband battled depression, when both parents had difficult periods with their mental health.

‘When the sharpest words try to cut me down…’

There have been many times in my life were there has been a small voice quietly whispering in my ear, you are not enough, you will never be and have never been enough.

There is always a louder voice, coming from my heart shouting, you are more than enough. You have all you need to get through this, it is all already within you.

I am resilient. That is an actual psychological term. It is not a term that belittles or is negative upon someone else’s reaction to life or journey. It is an actual way in which some people deal with life experiences. I have always been resilient.  Some folk have seen that as me being detached or having not dealt with my past. I always struggled with these attitudes more than I struggled with any stuff I had been through.

One of the most fulfilling moments I have had in recent years was discovering that a resilient attitude is perfectly healthy. It doesn’t mean that I am not coping and it doesn’t mean that I am being disparaging of other peoples journey it is pure and simply how I deal with my own personal experience.

So now I bite the bullet…

‘I am brave, I am bruised, this is who I’m meant to be’

This isn’t something I’ve spoken/written publicly about. Apart from a few fleeting comments when I’m arguing for the rights of prisoners occasionally on Facebook. Today felt appropriate…I’m not 100%sure why.

From the age of 4 to 7, I was abused. I’m not going to go into great details about that. Sure its part of me. I needed medical treatment until I was 14/15 (let me tell you that is not something you want to go through as a teenager). It played a part in a good chunk of my life. I have never once struggled with this. It was the medical issue that prompted the abuse to be discovered and stopped. I didn’t at that time understand I needed to speak out. When I was old enough to piece it together, I never felt angry or hard done by. I never feel traumatised or victimised or broken. Occasionally I feel very uncomfortable around some people or in a certain situations. It is not something major just a minor feeling of being unsafe, which sometimes is just awareness of a not ideal situation and isn’t a bad thing to be aware of.

You see long before abuse began I knew who I was. I knew that despite what was going on around me, I was loved and cared for and safe. I still know that to this day. Bad stuff happens. Life can seriously suck at times but I will always be me. No one can steal that from me, some might try, but no one will succeed.

‘I know I deserve your love, There’s nothing I’m not worthy of’

I am aware of how blessed I’ve been with a peace and a strength that’s covered me since I was a tiny child.

The best to come of this is that almost from nowhere I discovered that I had compassion for people who have been in my situation and where people find it very easy to reach out to the victim in these situations I have known for years that my purpose was to reach the perpetrators. I wont lie, I didn’t walk willingly into this. My degree has been changed three times, I have tried many avenues and no matter what path I take, all roads have lead to this same conclusion. You see very few folk find themselves in prison because they where born with a desire to cause harm. Many have been hurt in various ways themselves. The best way to heal hurt and anger and stop these cycles is by showing compassion and love and I decided very early in my life to let my heart be filled with love over hate or anger.

See the reason I share this story, today, on international Women’s day. Is because women have spent centuries overcoming hardship. We have been put upon and disregarded and abused and mistreated. But all women ever did was fought back with love. We are awesome caring, strong, resilient, courageous wonderful people.

Here’s the thing, the reason I can speak about this so easily is because I am now surrounded by women who I love. Women who love me. Women who hold me up when I’m struggling to do life, women who I have the honour of helping hold up when they struggle. See when we are comfortable in our own skin, when we are ok with who we are, we know are scars make is more beautiful and less broken… then we can be stronger people. For ourselves and for others.

So THIS IS ME:

I am Nikita. I am a mother, a wife, a daughter, a carer, an arthritis warrior, a Christian, a student, a sister, a daughter in law, a friend, a home maker, a family worker, a kids leader.

I am NOT, a victim. I am NOT broken, I am NOT worthless.

I CAN make a difference.

‘Look out cause here I come, and I’m marching on to the beat I drum, I’m not scared to be seen, I make no apologies, THIS IS ME’

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The Greatest Showman

01/02/18

Hidden in the shadows

We went to see The Greatest Showman in the cinema yesterday as a family and I have to say what an amazing way to start 2018. I would confidently say that this will be the best film we see this year. There wasn’t a moment that I could take my eyes off the screen, I found my foot tapping along to the music, my heart felt like it was bursting through my chest. It’s not often a film moves you to the point where you feel like it’s speaking directly into your heart.

What was more emotional was watching my boys watch this film. Elijah literally couldn’t take his eyes off the screen and he could barely eat his nachos (which he had spent 2hours going on about before we got to the cinema). This is a fairly grown up film. It’s a PG and totally suitable for kids, but the themes are mature and it gives a real life lesson. I wondered before we went how he would manage through it but he loved it as much, if not more than, the rest of us.

Ben, however, sat with tears streaming down his face throughout 90% of the film. Now Ben isn’t a crier. I can count the number of times I’ve seen him cry on one hand. He’s also the worlds greatest cynic, especially when he’s in a depression fog, which has been particularly thick of late.

But this film, this story, it got to him or maybe this story simply got him….

 

You see, this story is that of the outcast. The folk who don’t ‘belong’, the people who don’t quite have a place in our picture perfect society. Now I’m fairly certain there aren’t many who will read this who can not identify with that feeling. Even if you’ve been the most popular kid in school and you are still the most popular person in your circle, there will probably be moments where you’ve struggled with loneliness and the need to fit in.

For my boys in their Autism world, and for others on the spectrum, for the girls, for kids and for the adults this is all too often an every day, life long struggle. I have watched my child struggle to fit, to try and work out how to befriend in a world he doesn’t quite understand, to have friends on his own terms and to struggle when some pull away from that and I’ve watched the pure joy when those friendships bloom and grow.

Ben, however, as an adult who didn’t understand his Autism as a child, whose family didn’t get it and who had circumstances make his ability to fit ever more difficult still struggles. I watch him try to navigate friendships and family relationships and I see the humour that he sets up as front come crumbling down as a result. I see the hurt hidden deep below the surface and I’ve worked hard to break down the ‘I don’t care’ façade that he’s spent so long building.

Like so many of the characters in this film, Ben has hidden in the shadows. He’s been the person with a huge talent, hidden behind a lighting desk so no one ever knows his face. He is the person who can put on the most wonderful event and bring so much joy to others, while hurting with the pain of a million hearts inside his chest. There is a line in the film that says ‘everyone has an act’. Ben’s is that of the joker, when it should be that of the ring master. He has so much colour to be shared with the world. The problem is there are so many small minded folk shouting down that beautiful colour and keeping it boxed.

‘EVERY NIGHT I LIE IN BED AND THE BRIGHTEST COLOURS FILL MY HEAD, A MILLION DREAMS ARE KEEPING ME AWAKE’

Ben and Elijah both have ADHD. Ben says its like he can’t switch his brain off. Elijah just flits from one topic to the next as fast as lighting. Ben really struggles with sleep, he says he just cant keep his mind quiet, there are so many ideas just swirling around constantly, he finds it hard and I find it enchanting. When Ben lets go of what others think of him, he lets his creativity flow. His dreams, thoughts and ideas are the most wonderful life giving, enchanting , thought provoking musings I have ever heard.

Elijah struggles to sleep but he is the other way round. He wakes early, he is always awake and ready to start the day hours before everyone else. He is so full of life and energy. He is full steam ahead from the second his eyes open until his eyes close at night. It’s that kind of energy that can change the world.

I saw my boys in that film and I just love that again it promoted a idea that individuality is something to be treasured.

To be different is to be wonderful and exceptional and to choose to stand out and never fade into the background is what we should all be aiming for.

I don’t doubt for a second that my wee dude is 100% the ring master. He will steer the show, he will fill others with inspiration. The thing I love about my boys is their compassion. They can be cynical and appear rude and even anti social but they have hearts bigger than the ocean. They can spot others who have been outcast or hurt and they will always reach out to them. When these boys choose to champion you, you have the greatest ally you could ever find.

When I asked Elijah (future film critic) what his favourite bit of the film was, he responded, “The quote at the end….”

‘The Noblest art is that of making others happy’

The Noblest art is that of making others happy

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Thunder

12/27/17

noun: thunder
  1. a loud rumbling or crashing noise heard after a lightning flash due to the expansion of rapidly heated air.
    “there was a crash of thunder”

You know those moments in life? The ones where you are trundling along nicely, all the pieces of your puzzle feel like they’re slotting into place and then BAM, as if from nowhere there is a massive flash of lightening and everything suddenly, (although often as if in slow motion), is blasted out of place and you suddenly find yourself scrambling on the floor looking for your lost pieces while being very aware than you’re still waiting for the Thunder that follows.

I have always hated change, I like to have a plan, never a hugely ambitious plan and I like to know where that plan is headed, who I’m following out that plan with and then a nice routine to slot into place while I see that plan through. When someone or something from that plan disappears and things need rearranged or locations change or even plans just totally fall apart or change, I don’t always take it very well.

The hardest change for most of us is Grief, loosing someone we love is obviously really difficult. What I struggle with the most is the impact of that.

When we lost Ben’s dad Geoff suddenly 4 and a half years ago, that initial lightning bold of grief was so painful, the shock was almost unbearable and the pain was not only emotional but almost physical. As hard as that moment was, the Thunder moments that followed were where my fears lay. When you loose a family member the whole dynamic of your family changes, in our case we had to work hard to keep all our family puzzle pieces together in the midst of house moves, life changes, job changes and dynamics changing… we survived that lighting and more importantly we survived the long running thunder.

When we got a diagnosis of Autism for Elijah that was a Lightning moment for us, even though we where fully aware of the storm we where in and saw this lightening blast coming it still rocked us. Again there was a grief aspect to this, letting go of a future planned in my own mind a realising that things would be different than I expected but also an acceptance that we had braced ourselves for the lightening but that the thunder was going to run for a long time to come. Every time Elijah comes home from school closed off or in meltdown the thunder hits us again. When he barely spoke for four days in the run up to Christmas, the thunder hits us. When his whole body shakes with fear in an actual storm, the thunder hits us. When he struggles socially, the thunder hits us.

When at 21 I experienced the lightening moment that would have the biggest impact on my life, I was shocked but in that moment of ‘you have rheumatoid arthritis’ I had no idea that the thunder to follow for the next ten years would be so much harder to bare. With this situation, it is almost as if every time you recover from one rumble you are almost immediately hit by another. Once I accepted I had a life long condition and began treatment I then learned it was aggressive, I then learned it was resistant to lots of drugs, then it was still progressing, then I would have to face meds with extra conditions of their own, then I would get secondary conditions, then it would spread to my lungs, then id have to decide ‘quality or quantity’. There are moments in the storm when I’m not sure ill ever be able to stand firm again, its like my world is constantly being shaken and I’ve got to fight to keep standing, and moving forward seems almost impossible, the worst part of this is that no one else hears the thunder, they might get a glimpse of the initial lightning bolt our of the side of their eye or be vaguely aware there’s a storm going on but it doesn’t impact them and its so hard to get my own head around and its scary. I don’t want someone else to be on that wobbly difficult path and so I navigate it alone constantly worried for the next rumble and pulling further and further away from others who aren’t in my storm.

You know the awesome thing with Thunder.. and lightening… and storms… they do pass. Sure more come along, but so far, I’ve always got through, some are constant and some are fast moving but there is always, ALWAYS, beauty in the storm. It often feels as if, with each lighting strike I am knocked over but with every rumble of thunder I am made stronger, as a family we are stronger, as a person Elijah is stronger. Although I am afraid, and drained by this storm, I am strong, and determined and unbeaten, I choose to see the beauty and the blessing and to always wait for the beautiful, overwhelming calm that WILL follow the storm.

 

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‘To live would be an awfully big adventure’

04/29/17

I had so many plans for blogs this month. Autism is a massive part of the reason I started to blog. Therefore when would I want to blog more than Autism awareness month?

The crashing reality is that almost as soon as this month started I feel immediately overwhelmed. I have no idea why this year is different. I have always recognised and celebrated even, autism awareness week and month before Elijah or Ben where diagnosed.

I think my issue has been that I have struggled with the reality of Autism the past few months. I have walked Bens depression journey with him and depression is known to walk hand in hand with autism. Helping anyone with depression is extremely difficult but add in the Autism difficulty in processing and reasoning and its all the harder.

We got thought that stage and then Elijah’s anxiety has been at an all time high, meltdowns are frequent, unbroken sleep is non existent. Add into that the fact that he is a dream in school and falls apart the second he walks out the doors. That might sound like a good thing and of course it is in some ways, but its very hard to explain to school to be understanding that hes struggling in general when they don’t see it at all. Or rather sometimes people don’t look close enough. I can see autism in every aspect of Elijah’s life, I see it in how he holds in together in school. Yea he has some friends but those friendships are on his terms and they are with people who follow rules and play the way Elijah expects them too. There is no stepping outside of his comfort zone and I’m not even convinced there is a stong foundation in his friendships. What happens when things don’t go his way and he is left sat on his own?

I think what is so hard is that autism completely dictates and controls our lives, it is a powerful force that over throws anything in its path. I read something recently that said the Autism gene has survived evolution because it is needed for survival. I love that, instead of looking at it as a defective gene its actually a strong gene. I guess I could tell you that looking at my boys though. Both Ben and Elijah are strong and resilient and thrive in adversity and actually find ways to achieve and survive that no one else would even think of.

I love Ben and Elijah with all my heart and I wouldn’t change a single thing about them ever! I would change the anxiety, the depression and the hurt that is all caused by the world around them and the need to be able to fit in a world that has a long way to go in understanding anything other than neuro typical.

Where I have struggled is that I am Nero-typical, I have found myself fighting battles for them, becoming so engrossed and surrounded by Autism that I don’t know who I am in the midst of it. I don’t want to be a hardened mummy, always angry at the world. I don’t want to be a soft parent who makes excuses for my husband or my son. I want to find ways to help them adapt and fit and I want changes and acceptance so they don’t have to change and adapt. I want research into autism but I don’t want them to find a gene and destroy it, I want the pieces to all fit but I don’t want them to think that they are broken. I want to colour the world and light it up blue but I don’t want to forget to light it up pink or yellow or purple. I don’t want to be annoyed at autism terms or sterotypes because mostly people are ust trying to raise awareness. I want Elijah to not have a spectrum condition, why cant it just be simple and one size fits all so it doesn’t feel like an uphill battle to get people to realise that just cause he doesn’t fit your idea of what autism looks like doesn’t mean he doesn’t have it.

And as you can probably tell from that jumble is that I have become overwhelmed and burnt out. I am not nor have I ever been that perfect mummy with all the perfect crafts and buns baking in the oven. I am the mum who cant find the school socks as we’re supposed to be out the door and on the way to school. I am the mum who dreads parents evening because I think ill get told off and I am def the mum who brings shop bought buns to the cake sale.

You know that phrase ‘God only gives special kids to special parents’? like hell he does!! If it worked like that I wouldn’t have any kids at all. I do not have those mummy skills in my DNA. In fact 24/7 I am totally winging it. Every. single. day. WINGING IT.

Ben and I went to watch curious incident , last week at the Grand Opera House in Belfast. It was a wonderful performance and as always a great experience at a lovely theatre, (that theatre is rapidly becoming my happy place). The reality of that play was overwhelming but oddly refreshing. I read the book years ago and loved it, but I think the timing of seeing it was key this time. By the interville I felt thouroghly overwhelmed and was in tears by the end. It hard t watch something that’s not all that far from your own reality. Ben struggled when people laughed and I reminded him, how ma ny times we have struggled to keep a straight face at what Elijah has said. Ben is also the funny one in our group of friends. Being able to pull back from the worlds game playing and see the world differently is refreshing and yeah sometimes hilarious.

As part of Autism awareness month the actor Richard Mylan was part of a programme, Richard and Jaco: life with autism. I have been aware of Richard’s work with action for autism, (came across this by accident while doing some twitter stalking after waterloo road). Richard’s son has autism, now I love the way Richard speaks about Autism and how he talks about his son from having followed their journey for a year or two now. What I loved about this programme was Richard’s aim to help Jaco be independent, to equip him with life skills.

This hit me, this is my aim, this is what Ben and I work towards every day this is what every battle and struggle is for. Yea, my boys shouldn’t have to fit in but the reality is they need to be able to navigate life, maybe by the time Elijah is grown up the world will be a different place. Obviously I am blessed in that I have a husband with Autism. Ben only got his diagnosis two years ago, he didn’t get to access services, he didn’t get to develop coping mechanisms and he wasn’t understood at all grown up. Ben is still successful, he was done so well in life, despite all of the hurdles! Things have been hard for him and a lot of the source of his depression comes from those struggles but how much can Elijah achieve WITH support and services and coping mechanisms and life skills and understanding and awareness.

This journey is hard and very overwhelming, sometimes I just don’t want to walk it, sometimes I want life to be simple and straightforward and yea ‘nero typical’, then I remember how unbearably boring that would be!!

No matter what way this journey goes, I know without a shadow of a doubt, my boys can be anything, will be anything, are my everything.

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Mummy in a mess.

03/31/17

Ever have one of those weeks you just couldn’t make up?

We’ve had one of those! Partly of my own doing by cramming so much in and partly just random life getting in the way.

I started the week by taking Megan to go and see Wonderland at the Grand Opera House in Belfast. We made a little girly evening of it. We got the train to Belfast, did a little bit of shopping in the Disney store and then headed for lunch with my lovely friend, before going to see the show.

I wasn’t sure what to expect. I’m not a huge Alice in Wonderland fan but Megan is. Her obsession has meant in recent months the Tim Burton films have been growing on me so I thought this would be well worth a try for Megan’s birthday gift. I have to say Wonderland is an amazing musical. From start to finish we were both captivated, Megs adored the Mad Hatter and I loved Kerri Ellis as Alice. The whole cast were wonderful and really brought each character to life. I could happily have watched it every night had I not had such a mad, jam packed week.

Of course being out on a week night took it out of Megan, who loves her sleep, and she was very tired. This was not helped by the fact that Elijah had surgery on Tuesday morning and we needed to leave the house at 6.30 to get through traffic and parked. This meant having everything for Megan organised and waking her just before we left as her Granddad was looking after her. We all were a bit exhausted on Tuesday morning. Elijah’s surgery in November did not go according to plan and so there wasn’t much sleep had for Ben and I on Monday night.

Thankfully on Tuesday, after a bit of a wait and a tricky bit of fasting, Elijah’s surgery went amazingly well – far better than we could have ever hoped for. It even seems as though if all heals well, this might be the last bit of surgery he needs. Although he recovered remarkably quickly, by the evening he was a little unsettled and upset so he ended up sleeping in our bed. As Elijah does an awesome impression of a starfish, it wasn’t the best night sleep Ben and I have ever had but on a positive note Elijah slept really well.

On Wednesday Morning Megan said she wasn’t feeling great. Assuming she was just a bit tired from the events of the past two days, and maybe a bit jealous of her brothers time off school, I sent her on into school. I then headed to Ballymena to have a tooth extracted. My medication has a wonderful side effect of making my teeth break (I do love sweets too so I have to take some responsibility). I have had three wisdom teeth taken out before but always with sedation. Now thanks to yet another wonderful side effect of my arthritis and dodgy lungs, I no longer can be sedated. I knew I needed to get it out to prevent infection, which would stop my infusions, so I bit the bullet and booked the appointment but the day after surgery was the only time they could fit me in. I felt bad having to go out the day after Elijah’s surgery but thankfully he was in good form with my Mum. The tooth wasn’t nearly as bad as I expected. I was just very nervous and I have to admit I was so tensed up that my joints are a bit more irritated still now two days on. My jaw joint is also agony, it was inflamed before the treatment and its pretty awful now having been irritated further but it will pass.

I was able to go home and watch movies with Elijah the rest of the afternoon, both feeling a little rough we were good company for each other.

When I collected Megan from school she wasn’t feeling great, I sent her up for a nap and she seemed to improve but then by bed time she had a really high temperature. Ben and I took turns trying to get her cooled down and calmed, with Ben eventually sleeping on her bedroom floor with the radio on to get her to fall asleep for a little bit. When I took her to the Doctor yesterday we established she has tonsillitis and needed an antibiotic, (bad mummy thinking she just wanted a day off on Wednesday). We have also had massive battles to get her to take her medicine with her declaring so loud, the whole street can hear that ‘you are trying to poison me’.

Thankfully last night we all had a pretty good nights sleep. Today, however, I realised that I had forgotten that Elijah needs to dress up for his BB display tonight. I’m having to be a little ‘creative’ with what I am sending for him to wear. I also reckon that at least one of us will fall asleep during the display.

So basically this week I feel exhausted and a bit of a failure. I didn’t have confidence in the surgeon and perhaps made Elijah more nervous than he needed to be. I didn’t realise Megan was actually sick, I had to leave Elijah when he was recovering. Ben had to sleep on the floor in Megan’s room even though he had to go to work the next day. I’m fairly certain none of us have eaten anything remotely healthy all week. I forgotten homework’s, notes and healthy break time snacks.

I could laugh because I have planned to write a few blogs for Autism awareness month which starts on Saturday. But I have realised this is our real life! It’s manic and crazy sometimes and none of this had anything to do with autism. Yes there were a few times within this week where Autism played a part but mostly this is just it. As a family we’re just a bit messy.

As much as I’ve felt a bit rubbish and like I’ve failed both my kids and my hubby, I know that I have done the best I possibly can. It’s just a fact that life is messy, things get in the way and we’re all just juggling the best we can most of the time.

There isn’t a huge point to this blog just sometimes when we’re all having a tough week it’s good to know that we’re not alone. None of us have it all figured out and all together but sure we’re winging it together nicely xx

Be prepared for the Autism posts in the next few days xx

 

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A tale as old as time.

03/20/17

batb1

This weekend I got to go and see the new live action Beauty and the Beast.

I have to say I was a little nervous that it wouldn’t live up to my very high expectations as this film, although not my favourite Disney movie was one that was special to me and I remember clearly going to see the original.

This version did not disappoint, not even slightly, it is beautiful, perfectly cast and a musical masterpiece.

I couldn’t help but draw comparisons to the theme of the movie and real life. The Idea of the beast that everyone fears, the need for change and adventure, the desire to break down stereotypes and the preconceived ideas that hold us back and change the paths of our lives.

This new version shows a Belle who is ‘different’ because she’s educated and desires to better herself. She takes her future into her on hands instead of relying on who she would marry to decide her fate. Belle has always been a wonderful role model for girls, the original made me love to read and proud of the fact that I got so lost in books from a very young age. This version encourages my little book worm daughter to keep working hard, educating herself and to not look to anyone else to give her an identity. So yea, ok Belle still gets that princess, fairy tale, happy ever after ending but she didn’t get it cause she was pretty and threw herself at the beast. She showed her true fiery personality and she brought out the prince within the beast because of her kindness and intelligence and determination.

batb4

The Story within Beauty and the Beast which I have always loved, is that is makes us look at who truly is the Beast in the picture. Yes at first the prince isn’t a nice person and he deserves his spell. This new version really helps with his backstory and makes us understand why he became the spoilt, narcissistic person who wouldn’t show any compassion to an old lady. As the story moves on we gather more glimmers of who he was and why he was that way. Its a lovely moment when Belle suggests that the staff didn’t deserve to be under the spell and Mrs Potts says ‘Yes we did nothing.. while his father twisted the person he was becoming, we did nothing’ . I love the idea that there is a responsibility in each of us to look out for those we love and when we see them going down an unhappy path that we should not simply do nothing.

Its also so true that Beasts aren’t born they are bred. There was a reason the prince became this way. He wasn’t born spoilt and selfish and yes his life and consequences where a product of his own poor choices but remember that hurt breeds hurt. How many people do we look at and see a modern day ‘beast’ but should be look a little further and see the hurt and wounds that have marked their lives and see that the beast is simply a mask put up as a protection and once that has been removed there is something rather beautiful underneath. (Ok so it unlikely there’s a Dan Stevens, living on your street or on your school run or in your work place, but there could be a fairly decent human being).

I love that by the end of the film both original and live action, we realise that the real beast was living amongst them all the time.  Gaston truly is the one with the beastly attitude and although in the new film it took me longer to truly not like him cause is a little more loveable rouge than villain, his true colours show in the end.

LeFou Sings ‘ There’s a beast running wild there’s no question but I fear the wrong monster’s released.’

How often do we turn on those we don’t understand, on the people are different just cause they scare us. As a society we like things to fit nicely into little boxes and compartments that’s even true of people. It was so easy for Gaston to summon a mob because people fear what they don’t know and fear causes people to do stupid things in order to protect themselves or what they view as protecting themselves.

I couldn’t help but view this through my Autism mummy (and autism wife) eyes. So often people rule out Elijah or Ben  from things because they don’t understand or their afraid of what life looks like from their point of view. For so long kids with Autism have been pushed to the edges of society and not included in a community because people don’t understand and instead of educating themselves on the facts they choose to exclude, attack and even demonise our kids, family members, friends. If instead of listening to the rumours, stereotypes and quite frankly crazy notions. These kids, these adults, these all round amazing human beings who are 100% equal and wonderful can add so much to a community and society. Love and compassion can go a very long way and turn situations right around.

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So while we all come away from this truly wonderful cinematic masterpiece lets take a wee look at ourselves, at those we’ve cast out and those who we could reach out to.

‘BITTER SWEET AND STRANGE,FINDING YOU CAN CHANGE, LEARNING YOU WHERE WRONG.’

batb2

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A spoonful of sugar…

03/04/17

megderek

Today miss Megan had her 9th birthday Party and although she was turning 9 this was only the second birthday party she has had. It took me a good few years to recover from the first one!!

Todays party was simply amazing though and I cant wait for her to go back again, and Eli to go back and well I’m even working on Ben agreeing to me having a birthday party there.

Todays party was at Flossy Treats in Galgorm . This is a family run business that is a sweet shop, selling all those childhood favourites as well as some modern masterpieces. Then in the back of the shop they have a workshop where they hold birthday parties, (They also go to events, weddings, school fairs and a whole host of other amazing things).

We started the day by collecting a few of Megan’s friends and heading the 20 mins down the road to Galgorm. Finally making good use of the 7 seater car these past two weekends. We got to Flossy treats about 15mins early and where welcomed in by the staff straight away. The staff where great fun from the start, chatting to the kids and making a fuss of Megan and showing them all the posters around the walls that explain where chocolate comes from, (see chocolate comes from a tree I say that makes it healthy!! also educational!!).

Once Everyone had arrived the kids all washed their hands and sat at the table. They were then presented with lots of bowls of sweets right along the table and then given a countdown before they all took a bun case each and filled them with all the sweets they wanted. Amazingly the staff where super kind when Elijah wanted something more plain and they let him have how own little bowl of jelly rings.

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Once they had filled their cases they then had a plate which they then learned would be filled with chocolate before the decorated the chocolate with all their lovely sweets. The kids could each have milk chocolate, white chocolate or a mixture of the two, when they choose a mixture they could then have swirls, spirals or marble patterns made in their chocolate pizzas. All of the chocolate at flossy treats is the highest quality Belgium chocolate and its very true that you can taste the difference in the quality. It really was delicious and the kids could resist dipping their fingers into their pizzas. It was fun to see all the kids get creative and all do their own thing, no two pizza’s looked the same and they all admired each others handy work. The pizza’s where put into the fridge to shock cool and we moved on to the next part.

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Next the kids could choose between making a chocolate bar and a lolly pop. For each of these they choose one type of chocolate and then decorate it with some more yummy sweets and they even got to hide a special little surprise in their bars if they wanted to, but ill not go into that to spoil the surprise if anyone chooses to have a party there. The kids loved this as much as the pizzas. These too went into the fridge.

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While the kids waited for the chocolate to set they got some colouring pages to colour in and they all really enjoyed this and while they all happily coloured the adults got some tea and coffee.

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Then we brought out the birthday cake (supplied by Little treats NI). This Unicorn cake went down a treat and there where lots of screams when we cut into it to reveal a rainbow cake! Best cake reaction ever!!

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After cake everyone got their pizzas and chocolate bars/lolly’s back, they all looked amazing once they had hardened and they got put in awesome little pizza boxes. Everyone was so pleased with what they had made and all the kids raved about the party and even told Megan that because she’s on the student council she needs to get Flossy Treats to come to school…. watch this space!!

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We had a brilliant day, I loved watching the kids really enjoy themselves and honestly a family run business with people who are full of fun and genuinely nice and want your kids to have a great time makes all the difference. So many places churn birthday parties out like a conveyor belt, there is nothing personal and the parents are on the side lines. I have got to enjoy my daughters birthday and know I have memories now we will never forget. Megan had a blast, while still feeling grown up and that she got good time with all of her friends in a setting that allowed the day to be all about fun and friendship.

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Also Derek, who runs Flossy treats is a Disney fan – what’s not to love?!! So if your looking for an awesome Birthday party there is nowhere I could recommend more highly.

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A whole new world…

03/02/17

peacepromsThe world is a funny place. I have never been one with a great desire to travel and I would say I am a home bird really. Every now and again Ben and I discuss moving to England, because he misses home and it always comes down to the fact that I don’t really like change and I am settled in the place that I know, (and we cant afford to live in London).

The irony of this is that fairly often, I find myself hating this country. Northern Ireland is such a funny place and it frustrates me when we when we fight amongst ourselves.

We have such a wealth of Irish History and Culture while being ultimately ruled by Britain and yet not quite belonging there either. We are a fiercely independent nation, a strong bunch of people that have faced some harsh times and yet battled through with sense of community and determination.

So many Concerts and comedy gigs I’ve been to have said that a Belfast crowd are the best to play to. I think its because for so many years nobody played gigs here, and, for my generation at least, we feel grateful to be able to enjoy what everyone else can without the minority ruining it for us all.

I have to say I missed the most of the ‘troubles’. I’m too young to have grown up in the middle of it all, my mum and dad’s age group probably got the worst of it. I do remember having to leave Belfast city centre quickly when there was a bomb scare when I was only about 4years old. I remember the barriers that used to be up in Belfast so you couldn’t drive a car into the centre and I remember the security checks at the front of every shop. I remember some of my parents friends loosing jobs because the place they worked had been involved in a bomb and I know the stories of how my granddads shop was blown up twice, friends in security forces where targeted and I know all too well how how check under your car before you drive anywhere. In more recent years a remember being brought to tears by extended family members over my decision to date someone from ‘the other side’. I distinctly remember being told to ‘date my own kind’, ironically these family members also didn’t like Ben who is English.

With this in mind I bring up my children in a country that looks very different. This week alone Megan took part in the Peace Proms in the SSE arena, and also went on a shared education trip to W5. Shared Education is were Megan’s school works with the school across the road in an effort to build cross community relations.

What I love about these projects is that Megan doesn’t actually know why they need to take part in shared education, they just think its a fun way to make new friends, do cool projects and go on exciting school trips. Peace Proms is just the nice name for the amazing concert they get to take part in. She has no idea that at one point not so long ago we couldn’t have envisaged schools from all over Ireland coming together, seeing each other as equals and not seeing any difference in each other at all. They have no idea that once there wasn’t peace. Of course eventually when they are old enough they will study Irish history, (this is a great thing and the point in my life where I feel I got a balanced opinion), and they will get the picture but I hope by then that they will have seen the world for what it truly is and will understand how far we have all come since then.

Of course we still have a long way to go. As we face a new election and direct rule looks like a very real possibility. The reality of the difficulties of the different communities working together become more apparent and the reality underlying fear of going backwards rears its head, we see how fragile this country still is. The reality is we still have several generations worth of people with hurts and beliefs and anger that will be very hard to let go of. Those feelings are so easily passed down the line. I know I am far from perfect I know I have ideas that I was brought up with that I have had to realise are complete rubbish and issues that I will still need to let go of and be sure not to be passed down to my kids. I was lucky enough to have a fairly mixed family so I was never hard line one way or the other, apart from the odd issue with more extended family as I mentioned before. I am not in any way judging anyone’s culture either, my mum remembers watching the bonfires when she was younger with all her friends catholic and protestant together it was just a fun evening without any political agenda, obviously that wont have been true of every location but in some it was a culture to share.

What I love most is that the schools have embraced shared education. I mean I know a lot of it is to do with funding, but our kids understand that all these fun things happen when they all work together. There is no question of not wanting to play with the kids from the other school.

Today on a day where we elect a new government and everyone is hoping for change, for moving forward, for a group of people who will get decisions made. What we need to remember that as much as these people make decisions, our children are the future of our country. How we raise them, how we teach them and how we show them to act is how our country will look in 30 years time.

My daughter knows that the orchestra made up of people from all over Ireland made the most beautiful music she has ever heard. – check out twitter.com/cboiofficial

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She knows that when schools come together they have the most fun school trips she has ever had.

She has seen that our Disney friends come from all over Ireland, England and Europe and we all speak with different accents and sometimes different languages but what is true of all these things that, life is better when we do things together. When we include and accept, when we focus on what bonds us and not what divides us.

 

 

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I’ll be your clown.

02/13/17

A few weeks ago I wrote about how Megan was about to take part in her first school play. Of course it went amazingly and she was a wee superstar, in fact all the kids where outstanding really. It was lovely to see so many personailities be given the chance to shine in such different ways. I think what made it so special was that the teachers know them so well. Its not a big school and rehearsal time was limited but intense so they all got to know each other very well. This enabled the teacher to pull out the individual gifts and talents each child had. you could see them being pushed to the limits of their comfort zone and then just totally shining through because they knew people believed in them and so they reached their full potential.

Its a funny thing with people, don’t we just make such snap judgements on each other. You take a look at a person and instantly you’ve made some sort of assumption. We all do it, its instinct or nature, even when I try very hard not to do it I make that snap thought of, oh he looks scary, she’s confident, they’re so in love etc. The thing is society, culture etc builds up these ideas in our heads so really a lot of these things cant be helped. What can be helped is how we act on these assumptions.

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As a reward for Megan’s hard work for her play, we went ice skating as a family. Megan loves ice skating, and because we’ve been a few times recently her confidence has grown and she’s able to skate more and more without needing any help from Ben or I and her Penguin has been long left behind. What actually ended up happening this time was that Eli asked for Megan to help him round instead of ben and I and suddenly we found ourselves at the edge of the ice made a bit redundant. Instantly I felt sad as I watched them skate off alone, and then I realised actually this was a huge step, it was Eli taking a big social step, in a busy ice rink he was stepping out of his comfort zone and Megan was stepping up as his sister, she was taking that role as an additional needs sibling and she was shining bright within that. She knows him so well she knows his fears, she knows his struggles and she knows because she is confident in herself how she can help him overcome them, she was helping him shine!!

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I am not sure what people see when they look at our family. I’m not sure if we look like we have it all together. We certainly do not.

I’m not sure if they look at our autism journey and laugh, or mock.

Can you not just parent your child better? Can you not just set better boundaries? change diet? can you pray that away, Sure your struggle isn’t life threatening or physical so why are you complaining? I’m sure to some it looks funny, it looks like another bunch of people milking a system, sure why would you label your child if its not to get benefits, (to those people I say check out the price of sensory toys).

I would say that maybe I would have made those judgement before I walked this journey but I remember researching autism at the age of 16 and working with kids with add and autism when I did my work experience. Its been somewhere my heart has always been. But I can understand why some of you don’t get it. I understand that my life is something you don’t want to hear about. I get that when you see another autism awareness post you roll your eyes and scroll on.

The thing is, like the teachers in that play, they needed to understand those children so well, they needed to know their likes and dislikes they needed to know where their talents lie and yes where their weakness was in order to draw out the absolute best from them. We need to get to know people, we need to look beyond those backwards opinions we have stored up over the years.

They guy covered in tattoos? talk to him I bet he hasn’t ever killed anyone!!! The girl who must have taken hours putting on her make up, I bet she is as in need of a friend as you are. The kid who is rocking back and forth? He’s frightened or overwhelmed, but he is not to be feared, he is not to be ignored or avoided, ask his parent why he’s doing that, how does it help him? what can you do to be of practical help?

DO NOT go home and write a joke on your social media about it, do not put your uneducated comments out there for all to read.

One thing you need to know is that Additional needs parents are not Clowns, nor are our children. You might laugh but the jokes on you. These kids will very often grow up to be your surgeons, your dentists, your anaesthetist, the M15 agent protecting your whole country!!

While you feel the need to protest about labels, we are fighting battles to get the tiniest bit of support for our amazing kids who are so full of potential and are being shoved into boxes that your kids fit. Be thankful your child has an educational package that meets their need while ours struggle from the very basic essentials. So while its frustrating, we will not stop talking, we will not stop chipping at those wrong ideas of autism that have been built up over the years. this might make you feel uncomfortable but its not half as uncomfortable as living your life every single day in a world that doesn’t understand you and while that’s what my child has to face then I will not stop being his voice. ever.

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I guess it’s funnier from where you’re standing
‘Cause from over here I miss the joke
Clear the way for my crash landing
I’ve done it again
Another number for your notes
I’d be smiling if I wasn’t so desperate
I’d be patient if I had the time
I could stop and answer all of your questions
As soon as I find out
How I can move from the back of the line
I’ll be your clown
Behind the glass
Go ‘head and laugh
‘Cause it’s funny
I would too if I saw me
I’ll be your clown
On your favorite channel
My life’s a circus, circus
Round in circle
I’m selling out tonight’
(Emeli Sande)

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Finding a balance.

02/12/17

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This week Ben and I where very blessed to get two nights away to Galgorm Resort and Spa.

This is by far Bens favourite type of holiday or break and all other chances of booking holidays in the year are a total no go unless there is space and budget for at least one trip to Galgorm.

We try to visit once or twice a year, always for Bens birthday around February and then around October for our anniversary.

After a stressful the few months, we were both so in need of some rest, relaxation and an unbroken nights sleep!!

We started off Wednesday with a trip to the Royal for Eli to get a check up with his surgeon, ( you wait ages for appointments and they ALWAYS end up being when you have other things on, never the quiet weeks). It went well, as expected Eli will need more surgery, unexpectedly they are going to check things out with a camera first before starting the corrective surgery. Assuming that everything hasn’t magically healed since November this will now mean 7/8 surgeries instead of 6/7 but I do still feel this is a good decision. So Elijah will face surgery again in around 4/5 weeks so I assume in real terms it’ll be 9/10 weeks but time will tell.

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After we dropped Eli off with my mum, Ben and I headed to Middletown Coffee shop for some amazing stew and delicious Eton Mess éclair. I have to say this was an amazing start to our little break, the food was lovely the coffee perfect and the staff funny and friendly. It chilled us out after the hospital and put us in good spirits for our trip. We also stopped off at Flossy Treats, a fab little sweet shop (where Megan is having her birthday party), and stocked up on some lovely sweets to take away with us.

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When we arrived we where greeted at the door by the wonderful concierce decked out in his most dapper suit and hat. He then passed us on to Maurice who took our bags and showed us where to check and and waited until we had finished so he could show us to our room and explain how everything worked and that we could head down to the spa straight away. We have stayed in various room types over the years and this time we where in one of the deluxe river view rooms which was lovely. Some of the perks of this room are a free mini bar and a free late check out of 12pm, (which made the morning very relaxed).

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Both Ben and I where exhausted, Eli hasn’t been sleeping great and with Bens medication being changed around his sleep pattern is all over the place and combined with my arthritis in flare up there hasn’t been much sleep going on in the Clarke house the past few months. So we both decided to chill in the room till we went to dinner at 6pm. I took the opportunity to start a new book, (by Lucy Diamond) and Ben had a sleep.

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We decided to have both meals in Gillies as its our favourite, place to eat but we also had the option of the river room, (fine dining) or Fratellis (Italian). Both Ben and I opted for salt and chilli chicken to start and steak as a main, I had mine medium rare and it was cooked to perfection. Apart from being sat by the fire place and melting a wee bit by the end of the meal, it was pretty much perfect and pudding was amazing, sticky toffee pudding.

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After dinner we headed down to the spa which is open until 9pm and we always find it to be nice and quiet in the evenings. It was a lovely relaxing evening, and we where very keen to get into the steam rooms having walked in from the pool outside!

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Breakfast in Galgorm is one of the reasons we keep going back, you just cant beat it. as we where staying in a deluxe room we had the option of going to the river room for breakfast but on both mornings we opted for Gillies, Here you have choice of fruit, yogurt, pastries, cheese, porridge, crepes, waffles, cereal and full cooked breakfast. It is always lovely quality and the staff are very helpful and friendly and we had the added bonus of being able to watch the horses and their little goat friend getting their breakfast in the stables outside. Its a very relaxing atmosphere an we always feel full to the brim.

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We spent most of the morning and early afternoon in the spa again and enjoyed some light snacks in the oranagey as well as a delicious cocktail, sure we where on holiday after all!! Our second night we again enjoyed dinner in gillies again both having steak, however this time I had soup to start and it was delicious and full of flavour and I couldn’t resist my favourite, sticky toffee pudding again for desert.

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We again made use of the spa in the evening and again in the morning without having to rush due to our later check out.

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Honestly there is just no place I have found that is more relaxing, friendly and accommodating. I find it very rare to get a hotel that ticks all the boxes but this one truly does. I guess the only down side is that it totally has us spoilt for ever staying anywhere else. I know that this will always be our go to place.

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It can be difficult to leave the kids or up sticks and forget the real world for a few days but I think that in life it really helps to step back. I know that I have been letting the little things in life build into big things and this break just helped to defuse that. It helped Ben and I to laugh again and its recharged us for a year full of surgery and treatments but now we are ready to tackle it all head on.

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