Favourite Things (of Eliza)

This is a Listicle Friday post from the ‘Finish the sentence Friday’ group I am in although I’m finally adding my efforts on Sunday because, well life is busy as usual. This week we have to list ten of our favourite things so I thought I’d ask Eliza what her ten favourite things are and write about those. Some of her answers really made me laugh.

Pasta – Yep, seriously! One of her favourite things in life is pasta. She’d eat it every day if she could and it has to be plain with no toppings or only grated cheese. No other ways will do. Since asking her about her favourite things and her saying pasta, she’s now asking for pasta so I guess I know what I’m cooking tonight.

iPad – No surprise there. She loves her iPad and her precious Roblox game. Not so long ago the iPad was her means to helping her communicate with ‘talking software’ similar to PECS (Picture Exchange Communication System). Nowadays it’s all about the games. And the music. Eliza recently found a love for pop music after years of Disney tracks so she also has her iTunes play list on there which includes Taylor Swift, Queen and Ed Sheeran.

Her new knickers! – Oh how I laughed. But yes, her new knickers are amazing she says. She likes the boy shorts style ones and recently I got her some that have the word ‘whatever’ repeatedly printed around the waistband. She thought that was hilarious and now they are her favourite pants lol. Whenever she wears them she says ‘whatever’ in a kind of 8 year olds attempt at an attitude tone.

Super Mario – Especially playing Mario Kart 8 and Super Mario Maker. She has cuddly toys from the games, a racing track, a hoodie, socks… Eliza just loves Mario and has the games on her Wii-U and DS consoles.

Jaffa Cakes – On the off chance you’ve never heard of them, they are chocolate sponge like biscuits with an orange squishy centre. She loves them and would eat them all if she got her hands on them. Here, have a picture.. United biscuits sale

Adventure Time – An animated TV show that I just don’t get but she does and it’s one of her most watched things. “Twelve-year-old Finn battles evil in the Land of Ooo. Assisted by his magical dog, Jake, Finn roams the Land of Ooo righting wrongs and battling evil. Usually that evil comes in the form of the Ice King, who is in search of a wife. He’s decided he should wed Princess Bubblegum, though she doesn’t want to marry him. Still, he persists in trying to steal her away, and Finn and Jake, along with Lady Raincorn (a cross between a unicorn and a rainbow) do their best to keep her from harm”. To me it’s just background noise but she loves it and can talk about it at great length when she wants to. 

Special Days – OK this one melted my heart a lot. As much as we enjoy family time together I always do separate things with each of the kids (because they are in to different things, different ages and I think it’s nice to have quality time with each). I recently took Eliza to the theatre for a relaxed performance of ‘The Wind in the Willows’ and she loved it. Sat for the whole thing, laughed and clapped. It’s been something we’ve worked towards for a long time as anxiety often stops her enjoying things. On New Years Eve morning she decided she’d like to go to the cinema to watch ‘Lego Ninjago’. She’d not been to the cinema for years (anxiety) but with her new found enjoyment at watching Lego related animated shows on TV, she wanted to go. So we did. She sat through the entire thing equipped with sweets and a drink. She really enjoyed it and has asked to go to the cinema again so I keep telling her what is on, so when she likes something we can go. ooi98u8

Trumping – No, it’s nothing to do with Donald!!. Eliza is giggling away after saying this. Politely it means breaking/passing wind but she thinks this is a hilarious answer so here it is. #ShesStillLaughing   #TheThingsSheFindsFunny

Paddling Pools – Nothing she likes more in summer than a splash in the pool and a water fight. On hot summer days here I often see what has become known as the ‘school to pool’ transition. Basically there is a straight line from our front door to the back door. Eliza gets off the school bus and walks in, I tell her the pool is filled. In the few seconds it takes for me to close and lock the door and put her coat away she has already stripped completely and looking for her swim suit, leaving a trail of school uniform behind in the hallway. Yep, ‘School to pool’ lol

The House – She loves the house we live in and the surrounding area. We live close to forests to often see deer, foxes, hedgehogs, red kites and many more. We have a park we can walk to in five minutes and a lot of open green areas. Eliza loves her bedroom, it’s her fun and safe place to be. Our local area do carol singing at Christmas, Halloween trick or treat locally, Summer fun days etc. It’s very family orientated and very inclusive. I think the move here was the best thing for her and her brother.

So there you go, Eliza’s current most favourite things. She’s a funny character and there is never a boring day here at home. This, as I said above, was part of ‘Finish the sentence Friday’ and the new listicle thingymebob. This week hosted by Finding Ninee and Sporadically Yours

 

 

 

 

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Our December

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December is here. The countdown to Christmas has begun as advent calendars and candles start, countless elf on the shelf pictures appear daily on social media and generally the shops in town suddenly get busier each day on the run up to Christmas Eve. Of course, Christmas songs started on the radio as soon as Bonfire night was over! Our house is decorated, minus the tree that we collect in a weeks time. Both of my children love Christmas but especially Eliza. It’s her favourite time of year. She loves the lights, the tree, her letter from Santa, Christmas films, driving past all the houses lit up at night… Her love of Christmas and Santa helped Eliza on her journey to becoming continent too, with a little help from Mrs. Claus as well (Striving for Continence) . This year I’ve added something new. We have an elf, although he’s not on the shelf. I’m not doing it for monitoring or encouraging behaviours, the elf is not reporting back to Santa etc. I’m doing it because I think the kids will find it funny and have a giggle. You see, our elf is a very cheeky elf and he’s going to get up to some light mischief on the run up to Christmas, simply to entertain the children. That’s the way we’re doing it anyway.

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All presents are already purchased and hidden in the house ready for wrapping.  I’m an early shopper, once September school term starts is when I start picking up a gift here and there. I find it very hard to buy for Eliza every year. She has her safety net of favourite things that never change (Super Mario, any gadgets, Mickey Mouse, Sonic and Dr Seuss) which is a blessing for me as I can always find something she’d like. Other than those few things, her tastes change often. This year has been a little different. She had some ideas of her own and told me. The last few months she’s grown up so much in what she likes and how she behaves. Eliza would like an MP3 player because “I wants pop songs on it, big headphones and I can take it in the car”. She’s recently changed from listening to Disney Soundtracks to asking for pop music. Taylor Swift’s ‘Shake it off’ has her up and dancing before you can blink. She’d also like a bag and a purse so she can carry her fidget stuff around and her pocket money. My baby is growing up yet I can still see her in her red dress for her first Christmas, wide-eyed at the sight of Santa arriving at play group and then attempting to open her gift by eating the paper. In fact, I found that exact photo…

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Every year we visit Santa and this year is no different. I have a feeling we will be visiting Santa for a fair few many years yet. Eliza totally believes still, it’s more likely her younger brother will find out the truth sooner than her, at 3 years old he already noticed how Santa looks different on all the TV adverts! So yeah, we visit Santa every single December and she loves it. She ups her stimming in December, ‘the Santa effect’ I call it. She flaps and jumps so much with excitement I seriously think she stands a chance at flying one day. Her innocence is just so beautiful. As soon as she sets eyes on Santa though, her words disappear in a ‘star struck’ kind of way. Last year when she saw him she whispered quietly “He’s really here” and couldn’t stop smiling.

We try to take part in the local festivities too, the Carol Singing and lighting up the tree. I’ll be attending Eliza’s School for a few Christmas themed things and Noah has a Christmas party at nursery to enjoy. I’m taking Eliza to the theatre in a few weeks to see ‘Wind in the Willows’ followed by lunch in McDonald’s and buying some sweets from the shop before going home. That is our mum and daughter afternoon out (Noah and I go to kids farm and play place together one day when she is at School, that’s our afternoon out). We’ll have a drive around the local area now and again in the evenings to check out the lights on people’s houses.  So for us, December is pretty amazing. Sadly not everyone enjoys Christmas and the run up to it. It can be really distressing for many children and adults as everywhere suddenly looks, smells, feels, and sounds different. The routine is completely thrown out so just please be aware that not everyone will find it easy at this time of year.

Thanks for reading. This blog was part of a ‘Finish the sentence Friday’ and the topic is the holidays and the approach to them. Hosted by my wonderful friend over at Finding Ninee

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The Most Hurtful Words I Remember

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People often say stupid things. We all do it at some point and thankfully others do understand. We make mistakes, we’re human. However there are times that I wished people had put more serious thought in to what they said or even stopped themselves from opening their mouths in the first place. Words can be inspiring, educational, uplifting and life changing. They can also be devastating and hurtful. Most of us will have been hurt by things others have said even if they never meant them to. I sat here thinking about the things that have been said to us in the past and there are three memories that stick, for the wrong reasons. Three different times I’ve been left speechless or angry. So here they are…

  1. “Don’t expect much from her, she’ll never read or write and I doubt she’ll ever speak” were the parting words to us as we left the office of a pediatrician that saw Eliza when she was just 2 years old. He refused to diagnose her because she was “Too young to be autistic….” **Insert eye roll here** but he happily wrote her off. How?? I’m pretty sure he didn’t have a crystal ball to see the future or a time machine to back up his awful comments. He simply decided she was nothing and would become nothing. What did we do? We changed pediatrician! One that allowed her grow and develop and believed in her and encouraged her. Eliza proves the first one wrong every single day. Her speech returned, she can write although her fine motor skills will always need working on and she’s very much aware that it’s a weaker point for her (She has a lot of anxiety at the thought of even holding a pen but she still tries, never gives up). As for never reading, she is 8 years old now and school recently informed me Eliza reads age 10-11 year level.
  2. “Are you not scared there will be something wrong with that one too?” was said to me whilst pointing at my baby bump 4 years ago (that is now Noah, Eliza’s younger brother). Let me tell you that there is nothing ‘wrong’ with Eliza. She’s not broken, she’s different. She is beautiful, feisty, intelligent, funny and caring. She is autistic. She is not to be feared (unless the Wi-Fi drops and then it’s every man, woman and child for themselves…..). It amazes me even now how many people fear autism and their eyes fill with pity as they open their mouths to say something most likely along the lines of ‘Oh, I’m so sorry…..’ and it’s just another reason why it’s important to raise autism acceptance and understanding.
  3. “Why don’t you adopt her out so you can get on with your life. You’re young enough to have another one and they might not turn out like her” is THE MOST HURTFUL THING I’LL EVER REMEMBER TILL THE DAY I DIE!!! A friend said that to me. A FRIEND! (Who I have never seen nor spoken to since that day). All because I had said we were having appointments with a pediatrician to determine if Eliza would be assessed for autism or not. She wasn’t even diagnosed yet someone I trusted and cared about thought it appropriate to tell me to give her away. Not only that, to replace her as if she were nothing! I still struggle with processing this memory even now. Back then, I said nothing. I walked away in shock and cried at home. These days I’d probably be arrested for causing a scene as I’d be up there on my soap box educating people loudly and firmly!

So there they are. The three moments that played a huge part in shaping me for the person I am today and in a knock on effect, shape the amazing and beautiful girl that’s currently stimming next to me and laughing at ‘Tom & Jerry’ on TV whilst also scripting from ‘Wreck it Ralph’. For a long time I hid away from friendships and socialising with people because in my head if friends could say such awful things, imagine what enemies could say!!! Thankfully now we’ve surrounded ourselves with an amazing bunch of people, some have become great personal friends. Eliza is thriving and loves life, she has friends and is doing really well at school. She didn’t deserve to be written off and how wrong they were to do so.

 

 

Blooming Rainy Days

It’s August, and I can’t believe we are having such a rubbish summer weather wise. It’s been non stop rain for almost two weeks now, making it very hard to occupy the kids as they are off school until September. We’ve pretty much killed the play doh we have used it that many times, we can do all puzzles with our eyes closed and as for cakes…. We’ve made that many cakes that I almost fell off the scales in shock at slimming club when they said I’d lost last week! I’ve lost count of the amount of times that both of them have said “Mummy, stop the rain please so we can play outside”. Yesterday the rain stopped for most of the day and everyone went to the park and pretty much stayed there for hours making the most of the weather. We were lucky that a park opened just 5 minutes walk from the house so when the weather is good, we can head there and have fun and if the weather changes we can be home pretty fast. Eliza loves sitting at the top of the slide and looking over to the forest, people watching or admiring the birds flying in the sky. She can often be found sat there stimming away and just loving being outdoors. We also have plenty of things in the house to keep us occupied thankfully. Every year between June and July I stock up on things for the kids to do during the school holidays – lots of arts and crafts especially painting trinket boxes, decorating face masks and making silly hats etc, tie dye t-shirts to create, planting flower seeds, card making things, bead threading activities and other things. It gets us through the summer, especially on those rainy days.

It’s August, and I can’t believe Eliza completed a whole year at her new School in July. Where did that year go? She is so happy there and thriving. Her school report was amazing and it was lovely to watch her in sports day in the relay race. We were once told by a pediatrician that Eliza would never speak, read, write….. In true Eliza style, she is proving them wrong all the time. She loves reading, really enjoys her books and her speech is improving all the time. Her writing is something she has always struggled with. Fine motor skills are not easy for Eliza but she never gives up trying (although a fair bit of anxiety led verbal protests often happen before she picks up a pen). Friends that have been to see us recently have commented on how tall she is getting, how different she is each time they see her etc. In the last few months Eliza has started enjoying pop music and loves a good sing along in the car. She has also taken a keen interest in playing chess on the kindle after a friend let her play chess on his phone a while back. It’s wonderful to see her personality shining through and her willingness to show us what she likes and enjoys these days. She is growing up so fast.

It’s August, and I can’t believe that in just a few weeks Noah starts nursery! He is so excited and when his uniform arrived he just had to try it on. Well, he looks so grown up and very pleased with himself. This year he has really changed and he has the most sensitive, caring and loving personality (oh and very cheeky of course). Considering what he went through last year with operations, hospital stays and endless medications, he is just doing great. He has asked about nursery for so long he just can’t wait to go. Recently he had a settling session there and he cried because he didn’t want to come home, he wanted to stay and play! My little boy is going to nursery. He is ready, I’m not sure I am!

Well, summer might be a wet and cold one, but the kids are doing just great and whether I like it or not, they are both growing up. They are so different in personality, but so close despite their differences. They play and fight like siblings do. I am so very proud of them both.

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This blog was written for ‘Finish the Sentence Friday’ hosted by the wonderful Finding Ninee

 

Ideas To Help Toilet/Potty Train An Autistic Child

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I keep stumbling across posts all over social media from parents and carers asking about continence and toilet/potty training tips and ideas and finding myself repeating the same stuff on each one so it seemed a good time to put it in one place and do a blog. Eliza is 8 years old, diagnosed ASD age 3. Continence was always one thing she struggled with, she just didn’t show any signs of awareness or understanding it until last year and I’d tried various things over the years. During last winter, aged 7, something just clicked and I put a plan in place that I knew she’d both understand and love and it worked. I’ll post a link to the blog that covered that later on.  It was a perfect situation for us as I got to use Eliza’s favourite time of year to give that nudge she needed, and that she seemed ready for. It worked and she’s been officially classed as continent for six months now. We’d attempted potty training when younger and every now and then we tried again and it had never worked but we found some interesting ways to approach it so I’ll share them below.

*** These are ideas that helped us. They won’t work for everyone but you might get idea’s and be able to tweak them to suit ***

Favourite Characters

Being near Christmas when Eliza decided the time was right to toilet train, I used her love of Christmas as a nudge. I created personal letters from Santa and Mrs Claus and arranged a ‘special delivery’ from the North Pole. The package included knickers, toilet seat, books, reward charts. She loved it and was so excited about it. (You can read about how we did it here Striving for continence ). The letter was an excuse to add extra praise and support, full of lovely words and pictures.

If there is a favourite character they really love (someone from a cartoon or kids TV, someone from a book etc) it would be easy to recreate this and tailor it to them and your child’s personal needs and situation. It doesn’t need to be a specific time of year, just go with it and if you think your child would like it then get creative. You could even use a family member if that would work and after someone read my blog about continence last year, they used the family pet as the letter writer!. You know your kids so you’ll know their likes and what they might find fun or exciting.

Favourite Dolly or Teddy

If there is a favourite doll or teddy then this could work for children that tend to be more visual learners. I’d done this with Eliza many years ago but she’d clearly not been ready at that time. Use dolls or teddies and sit them on the potty. Hide a syringe up your sleeve (weak squash can be a bit more convincing than water, depends on whether your child will notice detail) and show your child what happens when sitting on the potty. Teddy can do a wee if you secretly squeeze that syringe in behind it. Lots of praise for teddy etc. It’s worked for quite a few children as they gained confidence seeing the process. I know some of you are thinking ‘what about poop?’ and yes, you can do similar and make your own pretend poop to use if you need to (Soft dough, icing and smooth peanut butter are good options. Add food colouring or chocolate spread to change the colour and use an icing piping bag to squeeze it from). It’s a little trickier to do these things is using a toilet instead of a potty but it can be done. You might need to practice hiding things up your sleeve and working it out but yeah. it’s achievable. **realising how much of my life was taken up with toilet issues 😛 **

Visual Aids 

Friends and family will testify that my bathroom had instructions on the wall for quite some time about how to go to the toilet…… in start to finish order including washing and drying of hands…. YEP!! Eliza is easily distracted and her anxiety can often make her lose her train of thought so I made visual prompts. We also had a smaller version of these laminated and on a key-ring for when we were out and about. They can be as descriptive or basic as you need. Pictures and/or written prompts.

Books we found useful

Suzie’s Toilet Time

Princess Polly’s Potty  (also a boys version ‘Pirate Pete’)

Toilet Time: A Training Kit for Girls (Ready to Go!) (also do a boys version)

Lulu’s Loo

There are also apps you can download if your child prefers those to books. ‘Potty time with Elmo’ was popular and ‘Potty train baby Eva’.

Whoever is wanting to toilet or potty train, involve them as much as possible. Let them choose underwear, style/design of potty, pull-ups, toilet seats. They can help you create reward charts of their choice or decorate it themselves. Get as many books as you can and see which they enjoy and understand better. Let them go at their pace and don’t worry if it doesn’t work first time. From first attempt to becoming continent it took Eliza four years! FOUR YEARS of trying stuff, finding ways she understood, different books, apps on the iPad, much trial and error. Four long years of her constantly watching me go to the toilet (Yeah, no privacy when you have kids!!). Just don’t give up because it can just take longer for some to be ready.

 

Changeable Mum

For almost three years I was a sign instead of a spoken word. Eliza had regressed and lost speech, she could not say that word that so many mums take for granted, ‘Mummy’. It was hard sitting in play groups and hearing children calling for their parents whilst Eliza sat happily on her own in silence. There was no “Mummy, come look what I have painted” or “Mummy, come see”. We relied on Makaton sign language to communicate. I longed to hear her say the word but instead she tapped three fingers on the palm of her hand which is the sign for Mummy. I was so proud that she could sign but at the same time my heart ached to hear a voice. But she knew who I was, she knew I was Mummy and that in itself was wonderful.

When Eliza’s speech started to return one of the first words she said was ‘Mum’. I was cooking in the kitchen and she tugged at my top wanting something. I asked what she wanted and she pointed to a toy she could not reach, pointed to me again and said “Mum” before pointing back to the toy. I cried. I’d waited a few years to her speak and I felt overwhelmed and relieved. It gave me hope that other words were still to come. To me it was the most wanted word in the world and I finally heard it. Since that day I have been called a variety of mum related words – Mum, Mummy, MumMum (she even made me a label with this on from a label maker), Mummy-Pig, Mother (I know right!!!) and more often that I can count “Muuuum” which is usually followed by the following sentences –

“…….can I have…..”

“…..where is the…”

“…is dinner ready?”

“….tell him!” (Directed at small sibling who is usually causing ‘trouble’ 😉 )

I’m a picture visual on the daily board we have in the kitchen. I was a Makaton sign for a while. I’m a label that she made (that still sticks to my laptop). My name is shouted in both love and anger. My name is whinged and whined at when she doesn’t get her way. My name is mumbled through tears when she’s feeling unwell. On the odd occasion, my name is sworn at and lashed out at in frustration. Once she announced “Mother!” when her Wii U game didn’t load properly.

Whatever the name she uses and whatever the context or situation she puts it in, it’s who I am and I love it. I love her. And if you catch her relaxed and at the right moment and you ask her who I am, she will simply tell you that I am “Eliza’s mummy” with a huge grin.

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This was written for the weekly topic in ‘Finish the Sentence Friday’ hosted by Finding Ninee and themeaningofme

 

 

The People You Meet…

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I’ve been alive for 40 years now so it is safe to say I have met a fair few people over the years. It is interesting how the people we meet change our lives and sadly some not always for the better but we learn from the mistakes, the pain and the negativity and we move on. I come from a large yet scattered and disconnected family although I am lucky to have a few amazing members of the family who have been, and always will be, there no matter what. Some do their best to understand about Eliza and autism. I have a select few close friends that know everything about me and my life. I have quite a few what I call ‘passing friends’ that I may not see often, may not chat to often but they are friends. It’s just that lives are so busy and sometimes so very different that we don’t get the chance to be more than friends that simply pass each other here and there. Then there is this extra family that I have. A family I found over the last few years and it keeps growing. This family is also made up of wonderful people. Some I have never met and some I may never get to meet, a few I plan to meet and a few I have had the delightful privilege of meeting already. I met them all through my blog and through my Facebook page Living With Blooming Autism

When you start to tell people your child is different, it can be a real make or break time between yourself and family & friends. Within months of telling people Eliza is autistic, our friendship circle didn’t just reduce, it pretty much disappeared. I was no longer welcome at coffee morning/play date sessions, Eliza was no longer invited to birthday parties. She was different and to some, she simply didn’t fit in with plans or ideas of how a child should be. Judgemental? Yes. Lack of understanding? Totally. The day a ‘friend’ told me to adopt Eliza to someone else so I could get on with my life was a moment that changed me and still gets to me even today. At 40 years of age I panic at the offer of friendship. That fear of being tossed aside and pretty much abandoned (at a time I really needed people the most) is always there in my head. The pain I felt in my heart that my beautiful daughter was not wanted by others because she didn’t fit their perfect ideas and lifestyles is always there in my head. Luckily I have been honest and open to the lovely friends that I have and they understand why I sometimes take a while to put myself (and Eliza) back out there for things. It’s not easy to regain confidence after something like that which was caused by something you and your daughter have no control over.

A couple of years ago I started our Facebook Page. It was an outlet for me, a way to spread awareness and understanding about autism but also a place to share stories about Eliza and how she progresses. Through that page and then this blog I have met some amazing people. Some are becoming very close friends and quite a few I chat to on a daily basis or regularly. A few have even met myself and Eliza. Some are fellow page owners/bloggers, some are parents/carers, some are teachers, some are autistic adults. Quite a few are a combination of those groups. All different backgrounds, some different Countries and various ages. A bunch of amazing people. They all just ‘get it’ when I rant about stuff or celebrate something that might seem so small to others but these guys know how important it is. We learn from each other because every single life story behind each of us is so different. We share our celebratory moments with each other and sometimes our darkest ones. We pick each other up on the days we feel like giving up, we celebrate the successes of each other no matter how big or how small. We fight sometimes, we bicker (let’s face it life is extremely hard some days and we are all exhausted) but we make up and we move on without grudges. That is why I call them my extra family. I need them. I like having them in my life. I love that they want us in theirs. Some of them I may have not met face to face yet, some I may never meet in person but they are part of my life through meeting online and making our own support network.

I love my family, my friends and I also love my extra family. Because of all the people I have met along the way, these are the ones that matter the most. These are the ones that are making me, me! The ones that accept and love us no matter what and continually offer support and understanding. Those of you that chose to walk away I thank you, because you helped make me the person I am today. Such a shame you won’t get to see the amazing person my daughter is. You chose ignorance over understanding and acceptance. Some of you just didn’t understand but rather than ask you moved on. You are missing out on so much. I will be fine. Eliza will be amazing. Because we have the people that matter.

This piece was written for  ‘Finish the Sentence Friday’ which is hosted this week by Finding Ninee and mardrasikora