I’m human, just not like you.
I hear what you don’t hear.
Do you hear me?
I’m human, just not like you.
I see what you don’t see.
Do you see me?
I’m human, just not like you.
I know who you are.
Do you know me?
I’m human, just not like you.
I hear what you don’t hear.
Do you hear me?
I’m human, just not like you.
I see what you don’t see.
Do you see me?
I’m human, just not like you.
I know who you are.
Do you know me?
The Boy granted me an interview in return for some Jaffa cakes. What can I say? He’s cheap. So without further a do.. here it is. Enjoy! 🙂
Question: What do you like to do the most?
Answer: You know! Playing Pokemon Moon! Duh!
Question: What is your favourite food?
Answer:. Chocolate digestives. You know that! *tuts*
Question: Who is your favourite person in ALL the world?
Answer: Mum, you know that too. It’s you. *theatrically rolls eyeballs*
Answer: Still you.
Question: What is your favourite TV show?
Answer: Pokemon Sun & Moon series.
Question: What’s your favourite book?
Answer: Diary of a Wimpy Kid Double Down cos at the first page Greg says “Hope you creeps are enjoying yourselves”. It’s really funny. *laughs hysterically*
Question:. What do you want to be when you’re older?
Answer: *throws his hands up in the air* Pokemon Master, of course!
Question: What things don’t you like?
*deep intake of breath* Vegetables cus they make my mind go pop, spotty bread, brown chips, black sausages, nuts, lime, black lollipops and Pokemon killing me.
Question: What do you like to wear?
Answer: Pokemon trainer clothes.
Mummy: Which are?
The Boy: Er, shorts and a top with no sleeves, backpack, cap and LOTS of Pokeballs.
Question: Mummy or Pokemon?
*looks shifty* Pokemon. Sorry Mum.
Question: What’s your favourite colour?
Answer: Yellow. YOU KNOW THAT!!
Question: Favourite animal?
Answer: Chicken? Don’t really have one so I’ll say chicken.
Mummy: What about owls?
The Boy: OOH YESSSS, OWLS! *starts hooting*
Question: What’s your favourite place?
Answer: Home. Ya gotta love home. *American accent*
Question: What is your greatest talent?
Answer: Singing and making Mummy laugh.
Question: What do you wish for?
Answer: To be a professional Pokemon trainer.
Question: What makes you nervous?
The Boy: “Shall I tell you what makes me nervous?”
Me: “Please do”
The Boy: “People cutting my hair”.
Question: What makes you smile?
Answer: When Mummy smiles (and my Pokemon)
Question: What age do you want to be?
Answer: Seven. Because I am seven. Actually, I want to be twelve so I can look cool because most people start their Pokemon journey at 11 years old?
*Mummy’s face goes screen-saver*
So there you have it, folks. As you can see, there is a Pokemon obsession going on and I intend to repeat the
interrogation interview every year to see how his likes and dislikes change. Crafty, huh?
Many thanks to The Boy for being a TOTALLY AWESOME Pokemon Master and most magnificent interviewee.
Creative Commons Image Via Pixabay
I’ve never been one for playgrounds..
Too crowded. Too noisy. A sensory nightmare.
The squeak of bare legs being forced down a hot metal slide on a summer’s day still makes me shudder as if there’s a hairy-arsed tarantula about to pounce on my face..
When The Boy was younger he hated playgrounds with passion. The first time we put him on a swing he like TOTALLY screamed the place down. Sure, children having tantrums are common place in parks but I’m talking TOTALLY LOSING HIS SHIT meltdowns where people stare at you because it MUST be down to bad parenting, no?
Playgrounds are a danger area for us because of the stimulus. Even now (aged seven) ten minutes is all he can handle before he starts to go into meltdown. Although the stimulus affects him, he likes the playground now. He is a sociable child but the problem is that he is too sociable and doesn’t understand the rules as is the case with autism. It doesn’t matter how young or old the other children are because they are all equal in his eyes and this causes problems..
For instance, on one occasion The Boy ran up to five teenage boys who were hogging the roundabout. He jumped on there with them as if he’d known them all his life. I hesitated to see how they would react to this little interloper but The Boy’s idea of play involves lots of incoherent shouting so it wasn’t long before the teens started nudging each other and laughing, the twats, though to be fair, they were just acting the way that most teenage boys act, it’s just that I’d have given anything for just one of them to show my son some compassion..
The Boy laughed back but had no idea that they were laughing at him. This took place in a matter of seconds but I’d seen enough but as I made my way to him the teens got up and just left him spinning on his own, not that it bothered him. As usual, he was oblivious as to what had taken place..
The thing is that he stands out.
His autism is IN YOUR FACE, autism.
We let him go into playgrounds whenever possible as long as he’s not showing signs of overwhelm before he goes in. We know that he’ll get over-excited pretty quickly so he’s given a ten minute countdown and those minutes seem like hours, believe me. All this on top of my own sensory issues makes it a stressful experience..
The last time he went into a playground was a few months ago. It was the adventure type playground and he homed in on a big rope type roundabout that could take about ten children at a time. My heart sank because I knew what was coming. I have a fluffy sensory toy which I keep in my pocket to calm myself and I stroked it so fast, I practically rendered it bald!
The Boy scrambled on with no qualms whatsoever. Aside my anxiety, I had to marvel at his inability to be apprehensive in certain situations. So, there was a little girl stood next to him and he shouted away to her. He was totally animated but she just stared at him open-mouthed and then asked to be let off. Once again, my son had been rejected only it was me who felt the pain, not him.
OH and I exchanged ‘the look’.
When we’d entered the playground, it was noisy with children screaming and parents chatting. It literally took five minutes for the atmosphere to change. One by one the kids on the roundabout fell silent as they stared at the little boy who excitedly screamed out incoherent babble to nobody in particular..
Then the parents stared at him and started looking around to see who he belonged to.
Er, that’ll be us, folks.
We knew he wasn’t going to make ten minutes as he was seconds away from meltdown and I wasn’t far behind having one of my own, so we grabbed him and left.
I didn’t look behind me because I didn’t want to see the judgmental looks on the faces of people who haven’t got a clue about our lives or his. I’ve seen those looks too many times and each time it hurts. I physically and emotionally hurt for my son..
So, I slammed the gate shut and pulled him close, mentally effing at the lot of them for not seeing my beautiful boy as I see him.
The blessing is that he is unaware of the way people stare. I was aware from the age of five so I’m glad he’s been spared for as long as he has but the day will come when he does notice and being different and knowing you’re different is hard. You’re forever having to work at appearing ‘normal’ and I pray that my son remains oblivious of people’s intolerance and ignorance for as long as is possible.
Those five minutes in the playground are still bothering me, obviously because I’m writing about it months later. It’s in my head now, logged with all the other ‘incidents’ and it makes me sad that some people show more compassion for their cars than they do human beings, especially vulnerable ones who could really do with their support..
Here’s a thought..
How about people stop staring and start supporting these kids?
Why shouldn’t my son express himself in the way that is natural to him? He’s not hurting anybody. It’s not an aggressive reaction. What people see is happiness minus the filters. To me, it’s beautiful. He is beautiful. It isn’t him that needs to change, it’s society.
“How would your life be different if…You stopped making negative judgmental assumptions about people you encounter? Let today be the day…You look for the good in everyone you meet and respect their journey.”~ Steve Maraboli ~ Life, the Truth and Being Free
When you’re an adult, a wardrobe is just a piece of furniture. It’s somewhere to hang your clothes and store boxes of old photographs from when you were young and energetic, not to mention packing a full set of hormones. To a child, however, it’s a porthole into another world especially if they’ve read (or seen) The Lion, The Witch and the Wardrobe..
The plot, of course, is that four children are evacuated from London in World War Two and sent to live with a professor who lives in a large country house with big wardrobes. The youngest child, Lucy, has a root round the Prof’s house and finds a wardrobe which also happens to be a portal to a magical land called Narnia. Having pushed past all the moth-balled infused fur coats, she wanders out into a forest where there is a lamppost. Here she meets a dodgy looking bloke who invites her to his house for tea (always say no, kids) but it turns out that this bloke, Tumnus, intends to betray her to Narnia’s resident evil overlord known as ‘the White Witch’. The White Witch has ruled over Narnia for, like, ever, keeping it in a permanent state of Winter. This is to keep the Narnians in their place though it may be due to a bad case of hayfever she had once, who knows? Anyhoo, old frosty chops has an intense dislike for humans so the Narnians are under orders that, should they happen across one of the blighters, they are to turn them in or she’ll start removing fingers/claws/whatever. Tumnus is well up for a bit o’ betrayal in the beginning but changes his mind when he realises he likes Lucy. Oops! Now he feels proper shit that he wanted to hand her over to the Refrigerated One so he does the decent thing and takes her back to the lamppost which is where it all goes tits up. You know how it goes…
When I was about 8 years old, Mum and Dad bought a wardrobe for my room, well, actually it was a combi-robe which was a combined unit of a mirror, shelves, drawers and a single wardrobe. However, to me, it was more than a piece of furniture..
I liked to sit in my wardrobe.
There, I’ve said it.
Thing is, I used to feel safe in there, especially if it had been a bad day at school.
It was a confined space, even for me, who was of Borrower proportions, but I could sit in my little wardrobe, close the door, and cry it all out without anybody knowing..
I was also familiar with The Lion, the Witch and the Wardrobe by then, having read the book and seen it on TV so I would re-enact it because my imaginative play was always about acting out what I’d seen in life or on TV.
The concept of a magical world being accessible from inside my wardrobe fascinated me. What would I have given for it to be true? Only, in my magical world, evil witches wouldn’t be allowed because there was one of those at school masquerading as my class teacher..
A few years later we moved house and two things stopped me throwing the MOTHER of all meltdowns. One was Dad buying me the new Adam and the Ants LP and the other was the walk in wardrobe in my new bedroom. Never mind sit down, I could go horizontal in this one! WOOHOO! The wardrobe also had pretty brass knobs on which I liked to mess with.. which did not please my mother.
“Have you been messing with these ruddy knobs again, Madam?”
“Er, no” and I’d leg it downstairs as fast as my fluffy slippers could carry me.
One of my favourite wardrobes, EVER, was my Nan and Grandad’s because it was JUST like the wardrobe in The Lion, the Witch and the Wardrobe and yes I did shut myself in it until the whiff of moth balls put me into a coma, Not sure about Narnia but I did find a nice clasp handbag filled with various corn plasters and a few furry Polo mints..
It was easier to re-enact the story in an 1800s Gloucestershire house than in my 1960s built bedroom. More authentic, y’know? Well, as authentic as it can be until your mum walks in and bollocks you for ‘rooting’ through your Nan’s things..
I’m not sure how old I was when I finally stopped sitting (not a typo) in wardrobes. No doubt marriage and motherhood left me with little time to indulge my love of wardrobe interiors. Also, they were jammed full of cricket paraphernalia, old shoes and other such crap that builds up when one has to share their abode.
Then there was that incident where one of the kids mistook their wardrobe for the toilet. *shudders*
Wouldn’t it be wonderful if Narnia existed though, eh? Without the resident bitch, of course.
How fabulous would be to have a really shit day and declare, ‘SOD IT. I AM OFF TO NARNIA!’ Though knowing my luck (and tendency for catastrophic thinking) I would most likely step out into the forest and be instantly mauled to death by a psychotic beaver..
Maybe I’m too old for sitting in wardrobes but I will never be too old to revisit Narnia via the book..
See you there?
“I wrote this story for you, but when I began it I had not realized that girls grow quicker than books. As a result you are already too old for fairy tales, and by the time it is printed and bound you will be older still. But some day you will be old enough to start reading fairy tales again. You can then take it down from some upper shelf, dust it, and tell me what you think of it. I shall probably be too deaf to hear, and too old to understand a word you say, but I shall still be your affectionate Godfather, C. S. Lewis.”
C. S Lewis ~ The Lion, the Witch and the Wardrobe
Creative Commons Image Via Pixabay
I wake up with a racing heart..
‘Fer f**ks saaaaake!’, I whine, a bit pathetically.
This time it’s different though because I don’t fear the sensation. It’s unpleasant but it will pass. I’ve been here a hundred times before.
‘Don’t you DARE look at the clock!’, I warn myself, though I imagine it’s around four. I elbow OH in the ribs because he’s snoring like a bastard, then I make myself comfortable.
I close my eyes..
I breathe in for four seconds.
I hold my breath for four seconds.
I breathe out for four seconds.
I reach into the certifiable mess that is my mind and retrieve a happy memory of a sunny day on a beach in Wales. I remove the people from the memory so there is just me. No stressed-out parents, no screaming kids and no Mr Whippy van with his highly irritating mechanical chimes..
I change the weather from hot to warm, because I can.
Editing done, I start to walk along the beach, seeing myself in first person perspective, just as in life. Though it has to be said that my feet are hideous..
There are sand dunes to the left of me, cliffs behind me and the golden Welsh sands stretch out before me. I walk for a while then turn to face the ocean..
I love the sea. It has the ability to take my life within minutes, yet can soothe my frazzled mind. The only snag is I can’t swim.
I watch as the waves roll in and out, synchronizing them to my breathing. Then I become aware of my bare feet sinking into the cool sand and a catastrophic thought creeps into my mind. I see myself being dragged under by deadly quicksand. This is because Mum, bless her, nearly ended herself on a beach in Bournemouth. Thankfully, all she lost was a flip-flop and her dignity.
The seagulls fly above me but there’s no danger of them crapping on my head. Nor are there any Carling cans and fag-ends jammed into the sand ruining my view because this is my special, no shit allowed, place.
Suddenly I feel something cold on my leg and look down to see a beautiful Lurcher with his nose pressed against my leg. He has golden fur, the kind that’s comfortingly rough. His eyes are caramel brown with more love inside them than you could ever imagine..
He starts to dance around me, nudging my leg and woofing like a mad thing.
He wants to play..
A piece of driftwood appears, as if by magic, and I hurl it into the sea with all the finesse of a shot-putter, not that he cares. Off he bounds into the waves, barking excitedly. He finds the driftwood and brings it back to me. ‘Again?’ his eyes implore me..
So I indulge him, again and again until I have to tell him to sod off because my arthritis is giving me gyp.
He hurdles the waves, like Usain Bolt, only with fur. He is uninhibited and for a moment I envy him because he isn’t scared of anything..
After a while he tires himself out and makes his way towards me. I crouch down to his level and stroke his face. He makes this noise, like he’s singing, only it’s more of a howl. It’s dog-speak for ‘I’m happy’.
Miraculously, his fur has dried out. How did that happen? Because it can, that’s why.
I put my face to his and breathe him in. He smells like sunshine. His aroma comforts me and I can feel my heart rate slowing right down. This moment lasts as long as I need it to, then he gives me one last look with those beautiful eyes before he ambles off towards the dunes..
I gaze down to see two sets of prints in the sand, one of hideous size 4 feet, the other of paws.
My four-legged friend is nowhere to be seen. No doubt he is lying in the shade somewhere chasing rabbits in his dreams..
A gentle breeze stirs up so I walk some more, watching as the clouds pass along the blue sky like big balls of cotton wool. If heaven exists, I want this to be mine.
My heart rate has returned to a steady beat and my breathing to normal. I am calm.
I stare at the ocean one last time then make my way towards the dunes where there are a set of steps. In reality, those steps lead to some public bogs that reek of piss but I edit that bit out because, well, it’s a bit shit.
As I climb the steps, I congratulate myself because Fear didn’t win this time. I showed that little shit who’s boss, i.e. me.
By the time I reach the last step, I am opening my eyes and blinking in the sunlight, or dinge, whichever is applicable. Back to life, back to reality..
The brain is a powerful thing. Thoughts can destroy and heal you in equal measure. My brain frustrates me on a daily basis with it’s catastrophic thoughts yet the memory of a much loved friend, who died over ten years ago, has the power to heal me.
The memory is real and it’s a privilege to have, just as it was a privilege to share part of my life with such a loving creature.
The first time I saw him in my guided relaxation, he simply appeared without me having thought of him. Did my subconscious bring him to me? Or did he find me?
Either way, I am grateful because each time I wake up panicking, I go to my special place and there he is, waiting for me.
Sometimes I need to shutdown.
I just stop functioning.
Even if I want to speak, the words won’t come.
Not even yes or no.
I am aware of you talking but I can’t answer.
Like a form of paralysis
I have no words to reassure you.
A storm is raging within me
My inner fight.
I’ll get through it.
As all storms pass
There may have been a trigger
A memory, thought or word.
Stuff builds up.
Things you’d never imagine would matter.
Trivial to you.
Astronomic to me.
Leave me to unravel my thoughts and I’ll come back
But for now I have to withdraw.
Like a computer that’s frozen
I need to shut down and restart.
I can’t process these thoughts..
They whirl inside my head.
Big fuck off mountains out of molehills.
Thoughts you wouldn’t want..
So when I leave without explanation, let me go.
In order for my mind to unravel itself.
I’m not doing it to hurt you.
Nor am I being intentionally rude.
It’s just that it’s necessary.
My brain is wired differently..
Incompatible with this world.
Too much information
So I’m asking you to understand as best you can..
The reason why this happens
That it’s not you.
Did you know that over 700,000 people in the UK are autistic and most of them are adults? Much has been written about children and autism but there is very little information about ageing..
Most autistic people have additional problems such as depression, anxiety, sleep issues or learning difficulties and on top of all this comes the ageing process – which can be shit at the best of times.
Being diagnosed at 46, I understand myself as the child that I was and the adult that I am now but what next?
What will happen to me when I’m old?
A positive thing about diagnosis is that it’s given me permission to be myself. Pretending to fit in is exhausting but I have confidence to be me so I no longer have to work quite so hard at existing.
However, the way my mind works is that I dwell on the past and overthink the future. The future causes me concern because I fear being put in an old peoples home where I would be forced to be social. I’m not saying that every autistic person will feel like I do as we’re all different but as far as I’m concerned, it would be hell.
I’m not completely averse to being social but it has to be on my terms and I reckon I’d die pretty flipping quickly if my need for solitude was not respected or understood.
I don’t want to sit on a plastic chair and watch shit TV programmes.
I don’t want to play bingo.
I don’t want to eat my food with everybody else.
I don’t want to go on day trips to the fucking seaside where I’ll be asked if I need a piss every five minutes.
I’m sort of hoping I’ll vacate this planet via my own home but you don’t always get what you want do you?
I get that oldie homes work for many people. The social thing probably keeps them alive longer but not me. I’d be bagged, tagged and laid out on the mortuary slab within a week!
As I age, I will most likely need more medical intervention. I mean, I’m creaking like an old barn door now so it’s a given. One problem with this is I struggle with verbal instruction, not because I’m slow, but because my brain can’t process more than one verbal instruction at a time so when medical professionals start reeling off instructions at one million miles an hour because they are SUPER busy, my brain goes screen saver and I just remember the first part or nothing at all. I need them to understand this about me and either slow up or write it down and when I request this of them I don’t want to be considered an awkward git.
One example of this is when I recently went for a Dexa scan. The radiographer fired out about four verbal instructions in one go. My brain went blank and I froze so he got up from his chair and physically moved my legs into position. He didn’t ask if he could move my legs for me and I resent that. I felt stupid. In the past I have been called stupid when I haven’t responded to verbal instruction. Now I understand why I struggle. I’m NOT stupid but people ARE ignorant.
I want healthcare professionals to understand that unfamiliarity makes me incredibly anxious which exacerbates my sensory issues, like pain threshold. I’m not being pathetic or difficult. I’d like them to treat me as they would a member of their family. That applies to everybody, regardless of autism, because we ALL matter. Would that radiographer have been as abrupt with his own mother? I don’t think so!
Although I’ve known I’m autistic for the past four years, I wasn’t able to say it. Had I have had the diagnosis it when I had that scan, I would have been able to explain about the verbal instruction (or OH would) and I wouldn’t have been made to feel like a tit.
The first children diagnosed as autistic are now middle-aged and I think it’s very important that we research how the autistic person changes physically, emotionally, cognitively and socially as they age. Most people need help in old age so it stands to reason that autistic people will require more support and understanding of their individual needs. I still fear old age but not quite as badly as before I was diagnosed..
The fear I have about not being here for The Boy is one I have the most trouble with. How will he cope without me? That thought physically hurts me but my job is to make sure that he can survive on his own. We’re on a path, him and I. He’s growing up and I’m growing old. I may still be 16 in my head but my body is convinced it’s 109. However, while I still have breath in my rapidly ageing body, I will do ALL I can to support my son. The day he no longer needs me will be a heart stopper but that’s what I’m aiming for. Not for my heart to actually stop cus I’d be dead like, but for him to be independent.
That’s what any parent aims for.
Some autistic people never achieve independence and that must be so hard for parents to deal with but I can only tell our story and independence is a possibility given the right support.
I’ve managed to survive for almost 47 years without support. However, it’s been hard and I don’t want him to struggle as I have. Once he’s living his life independently, I’ll embrace codgerdom in all it’s glory until Death points his bony finger my way and says in his best Sean Bean accent “Come on lass, let’s go ‘ome”.
And off I’ll go.
Thanks for reading.
‘Mummy, I PROMISE not to go crazy bonkers today.’
How my heart melted to hear those words..
The Boy was referring to his meltdowns because he was going on a play-date.
The last play-date was back in November and resulted in me having to carry him out of my friend’s house kicking me and screaming. OH picked us half way home and The Boy proceeded to scream and kick the back of OH’s seat. He fought OH as he carried him across the road and into the house. It wiped him (and us) out for the rest of the day. As meltdowns go – it was one of his worst.
Most autism parents will know what a meltdown is and they will experience challenging behaviour on a daily basis.
What is challenging behaviour?
The important thing to remember about challenging behaviour is that it has a reason.
If a child struggles to communicate it leads to frustration, anxiety and anger resulting in a meltdown.
What is a meltdown?
A meltdown (or going crazy bonkers) is a reaction to feeling overwhelmed and any number of reasons (or combination of) can cause it.
Some people make the mistake of thinking it’s a tantrum but there is a massive difference between a child who is having a hissy-fit over not being able to get their own way and one who is out of control due to sensory overload.
A meltdown is the last straw.
What can you do to help your child during a meltdown?
When The Boy goes ‘crazy bonkers’ he becomes aggressive. Being 4ft 2 and strong he is capable of doing some serious damage. This is the part of his autism which I struggle with and unfortunately it’s his most problematic area.
The Boy isn’t a naturally aggressive child. His default setting is to make people happy so for him to lose control means there is stuff going on in his head that he is unable to process.
How it began
The Boy’s behaviour was noticeably different early on and people put it down to the ‘terrible twos’ but I instinctively knew it was more than that – I just didn’t know what.
One day (aged three) he had an epic meltdown. One minute he was smiling – the next he was yanking out my hair and hitting me in the face. My bewilderment only seemed to spur him on. I understand now that the change in my facial expression must have upset him even more. I needed to put some distance between us so I put him in his room (removing anything that could hurt him) and closed the safety gate. Then I sat on the stairs and listened to his tirade in a state of shock. I had never experienced anything like it. He threw his toys down the stairs then I heard the door slam off it’s hinge. Three years old and he could take a bloody door off?
This doesn’t bode well for his teenage years!
*hysterical laugh* *makes mental note to go open-plan*
At that point I did what instinct told me to and held him. He was shaking with rage but I wrapped my arms and legs around him and rocked him back and forth. Initially he fought me but slowly calmed down. He slept for four hours afterwards which was unusual for him as he only usually manged half an hour but he was exhausted. As he slept I sat and stared at the wall. My mind was in tatters and my heart was heavy. Something definitely wasn’t right and I was scared. At that time I was keeping a journal so it was documented and four years later it’s hard to read.
A few weeks later he started nursery and the manager recognised the autism straight away. With our agreement the child psychologist was brought in to assess him. A year later he was officially diagnosed with ASD and Sensory Processing Disorder.
The rest is history.
To see our child lose it in spectacular fashion is hard to say the least. We’re not talking feet stamping tantrums here – we’re talking total and utter loss of control. It rips my heart out to hear him scream that he hates us but I know at that point he needs our love more than ever.
Our lives revolve around preventing meltdowns but it’s not always possible and the ones which happen in public are a whole different kind of stress because people can be judgmental and unhelpful b**tards.
I have meltdowns but mine are mostly silent. I shut down whereas The Boy explodes. For me it’s like having too may tabs open on the PC and everything locks up. The only way to remedy it is to shut down and re-boot. For him, it’s like the entire thing blows up.
Four years on and the meltdowns still happen but not as often because he is developing coping skills where he can take himself off to his quiet place when he starts to feel overwhelmed. Progress is slow but it’s progress and that can only be a good thing.
He may not be able to promise me he won’t go ‘crazy bonkers’ again but I can promise that we will still love him when he does.
“The kids who need the most love will ask for it in the most unloving of ways”. ~ Unknown
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