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
I watched BBC One’s Richard and Jaco: Life With Autism last night.
As a parent, I am able to identify with Welsh actor Richard Mylan’s fears for his son’s future.
As an autistic person, I understand Jaco’s world.
My son will be eight this year but does not have the ability to mask his autism as I have been able to do. Like Jaco, his autism is obvious. He wandered in while I was watching it and saw Jaco wearing his headphones. He said “Look mummy, that little boy looks like me!”
Richard impressed me with his desire to understand his son’s world even though it’s impossible for people to truly understand what they don’t experience themselves. However, Jaco is a lucky little boy to have Richard as a dad and the love he has for his son is a beautiful thing to see.
You get a view of what life can be like with an autistic child like Jaco. He reminds me so much of my own little boy, as in,visibly uncomfortable with environmental stimuli but happy in his world.
In order for him to learn more about Jaco’s future, Richard went to meet various people on the spectrum. First he met Alex Lowry who is a motivational speaker and trainer on autism. An animated man, he is obviously passionate about what he does.
Although Jaco started secondary school and was happy, Richard was interested in finding out about special schools. In one such school he met two teenagers who had been tasked with the job of showing him around. One boy told of the bullying he’d endured in mainstream school culminating in a broken arm and the other told of being ‘kicked out’ of school for being ‘naughty’. Both struggled in mainstream but both spoke highly of the special place where they are understood and most importantly, happy.
Then there was Edward who is severely autistic and in residential care. He is a young man who is happy in his own world and who has a great support network. He, like every other autistic person, does not know what ‘normal’ feels like. All we know is our normal. Ed has an amazing memory and can tell you what day your birthday was on when you were born in a matter of seconds. He is a fascinating person.
Ed’s mother by her own admission has taken a leap of faith in allowing him to live independently but said, “You have to let your kids go don’t you? You have to let them grow up and be independent”.
Bottom line is yes, we do.
The person who struck me the most was the young man who Richard visited in his workplace. This man was literally living his dream of doing admin. Yes, admin! The job that so many people loathe. Yet, he was happier than a pig in muck sorting through all the letters and stuff. What’s more, he is a valued member of the team and according to his boss, contributes to the happy and relaxed atmosphere of the office. What choked me up was when he said to Richard, “If I didn’t have autism, I wouldn’t be as special.”
Richard said “So you see it as a positive thing?”
With eyes that twinkled (and bloody good eye contact thank you very much) the young man replied, “Yes. autism is a very special thing and whoever has it should be proud of it”.
I am proud of who I am and I want my son to be proud of who he is too.
The Boy and I have the same problems but we react very differently. I am an autistic person raising an autistic child and I know how important these next few years will be for him. I can’t sit back and do nothing because he will be a teenager before I know it. I have to prepare my son for a life without me and I have to do it now. I can’t guarantee that his secondary school experience will be as positive as his primary one but I will be watching closely and if he’s unhappy, I will have NO problem in placing him in a special school, especially after seeing how happy those lads were.
My passion comes not only from being his mum but also my years of suffering in mainstream. I know, without a doubt, that I would have been happy in a special school tailored to my needs. With the confusion and crowds removed, I would have thrived instead of having just about survived. However, my time has long since gone. It’s my son’s time now..
I want him to have a relationship. To be able, not only to work, but to be appreciated for his contribution to society. Ultimately, I want him to be able to live independently of us. Don’t get me wrong, I dread the day coming when he no longer needs me but that’s also the day I’m aiming for. It’s what every parent aims for. Sadly, some people are too severely affected for total independence to be an option.
More than anything else in this world, I want him to be happy and to embrace his differences, not hide them as I have done.
We, as parents, do the best we can for our children. We give them the tools they need to survive and they take what they’ve learned out into the world. With autism, the work starts earlier. It has to. Richard Mylan knows that. I know that. Most autism parents will understand that. Another thing that unites us all is the fear of not being here for our special children so we do the very best we can while we are still around.
Thanks to Richard and Jaco for a glimpse into your lives and for helping to spread awareness.
Richard and Jaco: A Life With Autism is on BBC iplayer for one more week. Well worth a watch, folks.
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.
It’s a myth that autistic people don’t feel empathy.
Some autistic people may appear to lack empathy but it’s generally the case that they feel it but don’t know how to respond appropriately.
Some autistic people, like myself, have too much empathy..
I am hypersensitive to everything in life. Just as my senses work overtime so does my empathy.
My first recollection of being this way starts at school where children (including me) were singled out because they were different..
In primary school there was this boy..
I vividly remember the smell of him and the threadbare clothes he wore for days at a time. Having sensory issues I was acutely aware of the unwashed odour but never moved myself away from as other children did. They made a game of pushing each other into him and running off shouting that they’d got some disease because they’d touched his clothes.
Gets you right here doesn’t it? *taps heart*
I hated the other kids for that.
I hated myself for not making them stop.
More than anything I felt compassion and that overrode the sensory stuff.
It’s a different kind of sadness now. Back then I was a child who didn’t understand poverty. We were by no means well off but we had everything we needed and our basic needs were met. I’m a mother now who understands that, for whatever reason, his needs weren’t met. I never knew his story or how he came to be neglected like that. Maybe his mother was struggling to cope? Or ill? Maybe he didn’t have a mum? Whatever the reason it wasn’t his fault because he was just a boy.
I still think of him and always will and even though he’s grown up like me, he will always be that little boy.
A couple of years later we moved and I started my new school in the last year of juniors. The bullying, which had been sporadic until then, stepped up a few gears and would remain the case until I left school five years later.
So there was this girl..
The first day I saw her she was sitting alone in the hall eating her dinner. I didn’t give any thought as to why she was sitting on her own while everybody else was in groups. I just remember the stomach churning stench of cabbage and the sight of her with her bright red hair sat alone on a big table..
She saw me standing there, tray in hand, not knowing where to put myself and motioned for me to sit beside her. So I did and was grateful to her for being the ONE person in the room to welcome me.
The other kids made fun of her hair, among other things. I’ve never understood this about red hair because I think it’s beautiful. Jane Asher? Gorgeous!
This girl came from a big family and her clothes were nearly always too large for her. They were obviously hand-me-downs. She got picked on for that too. Where I’d come from it was the norm to wear your siblings cast-offs. I’d certainly never witnessed such snobbery before but it was clear that what was written on a pair of trainers mattered a great deal to some of my class ‘mates’.
The children dehumanised her. The abuse was constant and her defence was to cry or laugh back as if it was all some big joke. Some joke! They were arseholes to her and I wanted to make them to stop but didn’t know how. On the outside I was expressionless and motionless but inside I was imploding. This would stay with me all day affecting my mood. At home I would be difficult without understanding why. I know now that things stay with me long after the event.
There was almost a sense of relief when they turned their attention from her to me because it was easier to bear my own pain than hers. I can’t tell you how many times in my life I have rearranged it all in my head and stood up for her.
In my head, I stood up for myself EVERY time.
So when I hear about teenage kids ‘snapping’ and going a bit psychobilly at school, I have sympathy for them because they have nearly always had to endure years of bullying which is abuse. It doesn’t excuse it but explains it. I snapped and punched a girl who’d been bullying me but that was after enduring four years of daily abuse. I’m not a violent person but we’re ALL capable of violence when the right buttons have been pushed and that applies to EVERY human being on this planet. Piss the Dalai Lama off enough and he’d probably right hook you too!
The problem with my autism is that I feel too much and that’s both good and bad. Good because I can experience things and feel euphorically happy. Bad because I soak up negative energies and pain. I have so many memories and thoughts that I wish I didn’t have..
I am still haunted by the Jamie Bulger story and often lie awake thinking of the 15 year old boy who went to the 1989 semi cup final football match in Hillsborough and died in the arms of a policewoman, his last word being “Mum”.
I can’t watch horror films and struggle to watch scenes of violence. When my anxiety is at its worst such scenes will trigger panic attacks. I can cope with scenes of bullying if there is an element of humour to them, as in, the bullies are made to look foolish. However, bullies are made, not born. To understand a bully you have to know their life and more often than not there will be something (or someone) that changed them. Painful memories may cloud my empathy towards certain people but it’s still there at default level. Yeah, they were bastards who hit me but who hit them?
The Boy is also highly empathetic. He couldn’t watch the BBC 2 Venus flytrap indent that was running last year. He covered his ears and looked away EVERY time.
The Boy has empathy by the bucket load and is autistic. Like everything else in his world, it’s amplified. Colours are BRIGHTER. Sounds are LOUDER and he feels emotions with such INTENSITY that it physically HURTS him. However, he struggles to react appropriately and so people misjudge him..
So many things about autism are misunderstood and empathy is one of the big ones.
I’m here to help my sensitive child understand the world which is a hard task seeing as I struggle myself but I can teach him what he needs to survive and hopefully thrive. Maternal instinct makes you do things you wouldn’t normally dream of. I just wish I could have done something to lessen the pain of those two children at school. Their pain, hopefully long gone, will always be mine.
The problem with empathy is not being able to let go of something, even when it’s a memory.
“for there is nothing heavier than compassion. Not even one’s own pain weighs so heavy as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes.”
Milan Kundera ~ The Unbearable Lightness of Being
It was 1981.
It was the year of MTV music channel, Charles and Diana and Bucks Fizz.
It was also the year that we moved house. So for me, it was shit.
I was struggling before we moved and being in a strange house and having to start a new school where I knew NOBODY made matters one hundred times worse. One of the memories that stands out is having to stand in the middle of the classroom while the entire class were forced to introduce themselves to me one by one. This was the idea of my new class teacher, a frizzy haired man beast who quite frankly was a sadist. I stared at my trainers and turned a non-flattering shade of crimson..
I just wanted the ground to swallow me up.
Or for the fire bell to go off.
Neither happened because God apparently hates me.
Now, at school when it came to girls, there were Weirdos, Normals and Bitches. Weirdo’s sometimes mixed with Normals but NEVER with Bitches. Bitches would mix with Normals if there was anything in it for them, like copying homework.
One of the Normals invited me to her party. She lived just across from us. I didn’t want to go but Mum felt that I needed to make some friends so she practically frogmarched me across to the girl’s house.
The party was in the garage. Yep, I wondered about that too but in hindsight when faced with a load of pre-teen girls cart-wheeling perilously close to your Wedgwood collection you kind of see the brains behind the plan.
My heart sank when I saw some Bitches had also been invited. They were all wearing satin trousers because that was the fashion of the year. The girl who’s party it was, was also wearing satin trousers. In contrast Mum had picked out for me (her TOMBOY daughter) a hideous skirt teamed with yellow top and cardi combo. I felt about as comfortable as fly in it’s final death throes after being Nippon’d!
ALL the girls had long hair. There was a sameness about them. Like sheep. No originality, you know? I envied their hair though because Mum had yet to allow me to grow mine. My hair was short (ish) with one side that permanently stuck out.
It’s not that I wanted to look like they did because I don’t do fashion. I just wanted to wear what I felt comfortable in which were my brother’s tops and a pair of old jeans but Gestapo trained Mum was having none of my ‘crap’.
So skirt and cardigan it was.
The girl’s mum tried to get me to join in with dancing and stuff but I just stared at her vacantly while my brain short-circuited so she gave up sodded off back inside, no doubt to wonder what her daughter was doing inviting such a misfit to her party.
I was the life and soul that day. Not.
I couldn’t dance (not that I can anyway)
I couldn’t eat.
I don’t think I actually moved the entire time I was there.
I didn’t drink in order to avoid having to ask where the loo was.
I couldn’t even enjoy the music.. mainly because it was naff party type music, therefore shite.
So it wasn’t the best experience of my life..
Needless to say the Bitches threw some hostile looks my way whilst having a giggle over my clothes.
I secretly hoped one (or all) would choke to death on a sausage roll.
The thought that’s haunted me all these years is why I didn’t just go home? I could see my house. It was literally yards away from where I was standing. I could see my mum having a fag in the back garden. She was enjoying the sunshine oblivious to the fact that her daughter was in some kind of satin infused HELL.
All I had to do was propel myself forwards but I couldn’t move..
Thing is, I was brought up to be polite and by the age of 11 my manners were instilled and I think that’s why I couldn’t just walk off. Excusing myself would involve having to speak and I was struggling to breathe, let alone speak, so I just stood there like an idiot. When the first parent turned up, the girl’s mum took pity on me and told me I could go if I liked..
If I liked?
I was through that garage door quicker than a greyhound out of a trap!
Back to my home.
Back to my sanctuary.
To most little girls a party is the thing of dreams. A chance to dress up and be pretty. To me, it was something to endure. AN ABSOLUTE NIGHTMARE!
Mum never knew the real me. Sadly, she died not knowing. She saw extreme shyness, a loner and a girl who was never fully present but had no idea of what was really happening because I struggled to verbalise it. I was one of MANY girls from my generation who were misunderstood and suffered as a consequence. Maybe that’s you too?
46 years later, I know who I am and I’m proud of little me for hanging in there that day and not puking all over the garage floor. GO ME!
As for the Bitches..
“SEE YOU IN THE AFTERLIFE, GALS!”
Creative Commons Image
Creative Commons Image
“Follow your inner moonlight; don’t hide the madness.” Allen Ginsberg
Throughout my years of blogging I have always made it clear that I have life-long issues relating to social communication and sensory issues.
I was a misfit from the moment I started school at five years old. Why five? Well because it was just me until then – me, the Golden Labrador next door and my rather fabulous inner world. I had no reason to know I was different.
Since then life has been difficult at best. At worst, it’s made me ill.
I’m ill now having hit a crisis point with the general anxiety disorder I’ve had for the last three years.
I have always had anxiety right from as far back as I can remember. As a child I was generally THAT pale I looked as if I’d been exhumed and I had one ailment after another. I didn’t understand it was anxiety at the time and I feel sorry for that little girl because as bad as I feel now at least I know why I feel like I do. Little girl me didn’t have a clue and was very scared. I couldn’t tell anybody. How could I when I didn’t know how to?
I don’t know what it’s like NOT to have anxiety in some degree or other.
The things that most people do effortlessly are challenges for me. As soon as I go through the front door I have to pretend to be normal, whatever normal is. All I know that after 40 odd years of observation, on a good day I can pass for ‘normal’. On a bad day you’d be sending round the nutter van. This is because pretending to be normal takes effort and it’s exhausting. It exhausts body and mind and after all this time, well, I’m knackered.
Online I get to communicate without the problems I get when faced with actual human beings. The barrier between me and the outside world allows me to interact in a way that I’m unable to in life without making myself stand out. So what I am going to say may come as a surprise to people who interact with me online..
You see, for most of my life I have been aware that I am different but I’ve never known why. I must have spent hundreds of pounds trying to find myself within the pages of self-help books. Bouts of anxiety and depression over the years have led to therapy but therapy for what?
I never knew what was wrong with me and it REALLY bothered me.
My list of problems is ENORMOUSLY LONG but here are a few things.
Avoiding answering the door or the phone.
Being unable to walk into a room full of people.
Certain materials make me feel so irritable and uncomfortable. (Nylon? *boak*)
Struggling with eye contact until I was in my 30s.
Having too much empathy.
Being constantly bullied as a child and teenager.
Not being able relate to most other girls.
People calling me weird including the local pisshead and it must be bad when the local swiller tells you you’re weird.
Shutting down when overwhelmed. (selective mutism)
Escapism being VITAL to my mental well-being.
Soaking up people’s moods up like a sponge. (You’re having a shit day? Then so am I)
My body reacting in the same way no matter how many times I do something.
Why I am obsessive in thoughts and interests.
Why my ‘imaginative’ play only ever involved imitating what I’d seen on TV programmes or films.
My mood going from euphoria to despair and everything in-between in any 24 period.
Having to observe and copy in order to fit in.
Why I have picked at my skin so much that I have scars.
Always feeling a sense of unease. (WE’RE DOOMED!)
Always feeling the odd one out.
Catastrophic thoughts about everything.
Questioning why I am here.
ALWAYS feeling that I was not meant for this world..
You get the picture?
So I had resigned myself to being a weird sod. One of life’s oddities. A misfit.
Then we took The Boy to be assessed for autism and from the questions they were asking I knew then that I was autistic.
LIGHT BULB MOMENT!
For almost four years I debated whether I needed a formal diagnosis. Many people are content to just know that they are autistic and trust me, most people know. For me, it wasn’t that simple because some of my issues have become worse as I’ve got older and one of my fears is being thrown into an old persons home where I would die within a day because of the social aspect.
Also, I needed validation.
So last year I was assessed and in February this year I was formally diagnosed as autistic and the relief is immeasurable. I’m not weird. It’s just that I perceive the world differently.
Last year I went to the autism show in Manchester and it was while I was there that I came across Peter Street. Peter is a national and international poet and was diagnosed late in life as autistic. Peter was one of the speakers on the day and spoke of his experiences at school and his diagnosis. Hearing his story helped me to make the decision to go for assessment because I could see how much it had helped him and he was older than me when he was diagnosed so I knew it wasn’t to late for me. So, thank you Peter.
Peter also passed round a poem which was written for everybody on the spectrum. I have this on my kitchen wall and read it every day..
Not Being Me by Peter Street
Childhood nights were dreams
of being a sheep
then up and out of a morning,
a quick check to see
if by any chance in the night
there had been a change
of being just like all my friends
and not the odd one out
like afternoon dance lessons
in the toilet
out the way because
I couldn’t dance the sheep steps
that’s why I dreamed
of being a sheep
so I could be like everyone else
I listened to this poem and cried because I understood EVERY word of it. How many times as a child had I prayed that I would wake up and be like everyone else? However, I wasn’t like everybody else and now I know why. All these years I’ve been fighting against my own brain so is it any wonder I feel so tired now?
So, as Mozzer from Manchester once said…what difference does it make?
Well, it just means that I have a formal explanation for why I struggle so much and hopefully I can get some support as I get older because I really am scared of having to live in Shady Pines and having to play bingo and shit. I would rather choke myself to death on my own false teeth!
I’m still me. It’s just that my reality differs from yours. That and I touch plugs waaaaay more than is healthy, y’know?
So there you are..
I’ve outed myself as the autistic human I am and have always been.
Thank you for reading.
Not Being Me poem used with kind permission from Peter Street.
Images via Creative Commons
It’s hard to believe that it’s almost four years since The Boy was diagnosed as autistic. The time has flown by and it’s been quite the journey so far..
The Boy’s problems were obvious from the age of two but the childcare ‘professionals’ where we lived were oblivious to the fact that he was still crawling LONG after all the children his age (and younger) had started to walk. His inability to cope with the slightest change and his meltdowns also gave them no cause for concern despite me voicing my concerns..
We moved from Cheshire to Lancashire just before his third birthday. We hadn’t had anywhere specific in mind except that it had to be commutable for OH’s work. We drove through many places but only one stood out and I still have the piece of paper where I treble underlined the name of the town with a side note. “HERE!”.
‘Here’ is an old Victorian mill town with bags of character nestled at the foot of the Pennines. It’s quaint but it rains a lot. Oh well, can’t have it all eh?
We’d only lived here for a few months when came time to look for nurseries. I looked at three in total, two of which were rated highly by Ofsted. They were clean and bright with new toys but they didn’t feel right to me. The third one was in need of a lick of paint and the toys were well loved but it felt right as soon as I walked in. The manager (L) was cradling a child on her lap and several others were hanging off her arms. All the children looked happy and I could tell that L was more about the children than the business. That sold it for me and he started that September.
Within two weeks, L took me to one side and said there was a problem. We’d made no mention of The Boy’s issues because we needed to see if they were picked up without our influence. She used the word ‘autism’ because she had experience with autistic children so she asked if we’d agree to the child psychiatrist seeing him. It was such a relief to know that it wasn’t just us being overly dramatic.
The child psychiatrist assessed him in the nursery over a few sessions and referred him for a multi disciplinary assessment in the local hospital. He was assessed over a twelve month period and by the time he started school a statement already was in place. He was diagnosed with Autism and Sensory Processing Disorder aged four.
We had a choice of three schools but only one had a good reputation with special needs. If there was ever any doubt that we’d chosen correctly it disappeared the day the headmaster lay down on the playground floor (in his suit) next to my son who was starting to go into meltdown. How many headteachers do you know who would do that?
Our journey of assessment to diagnosis was smooth though I know this isn’t the case for so many parents. The Boy was assigned a special teaching assistant who worked with him for 3 hours at first then all day when it became obvious that he required full support.
There have been occasions where we have been called to school either to calm him down or take him home. This is also at our request. When your child displays such severe challenging behaviour in a mainstream school the headteacher has to tread a fine line between meeting that child’s needs and maintaining the safety of the other children and the staff. The good thing is that none of these episodes have come and gone without a meeting taking place to see what can be improved on. The staff are always using new techniques and strategies to help him and anybody involved with him, including playtime staff, are educated about challenging behaviour and how to deal with it. We work as a team and the relationship between us and the school is brilliant and we know that he’s loved there.
The Boy has worked with his one to one for almost four years now and they have a special bond. Also, she totally puts up with his shit and does it with a smile. For him she a familiar face who not only guides him but comforts him. She knows him as we know him and she comes to see him during the long summer holiday so that he doesn’t go too long without seeing her. She doesn’t have to do that. It’s not part of her job but I know that The Boy isn’t just a job to her and so when I see him rush up to her and hug her as tightly as he does me, I know he is exactly where he is meant to be.
The other week we had to go in and calm him down as he’d trashed the classroom. There was toilet roll all over the place, upturned chairs and tables at funny angles and me laddo was refusing to come out of the toilet. When I went into him he was stood on the toilet seat growling which is always a bad sign when he becomes non verbal. The school have been told to contact us in these situations if he won’t respond to them because he will respond to us, me in particular. It took 45 minutes to get through to him but we got there in the end..
The difficult part of my son’s autism is that he often loses control and can become disruptive but they never give up on him.
The Boy has gone through a few different obsessions over the years..numbers, Lego, owls, Ninjago, Minecraft and his latest..Pokemon. Anybody who has autistic children (or is autistic themselves) will understand obsession and the need for it in order to cope with a world which overwhelms. The school understand this and accommodate his needs incorporating those obsessions into as much of his school work as is possible to get him to engage.
The Boy will be 8 this year. He is one of the youngest in his class and the differences are becoming more and more marked as I knew the would. He’s always stood out but there is much that autistic children can get away with in those first few years of school that they can’t as they head towards puberty. Hormones turn children into little shits and autism doesn’t exclude children from said shittery. It’s just a different kind of shit.
Aside some blips and attitudes from a few narrow minded parents at school, he has been a happy little boy who enjoys life and certainly brightens up the lives of others. My late friend may not have fully understood his autism but she accepted and loved him for who he is. If only every parent at the school was like her life would be so much easier.
As he gets older I become more wary. Not of him. Never of him.. but how the world will perceive him. Perhaps this is because I was constantly on the receiving end of bullying as a child and teenager but the point is that I know how cruel children can be especially to those who are different from themselves. The thought I cling to is that a big difference between The Boy and myself is that more things go over his head whereas someone only has to look at me in a certain way and I feel as if I’ve been GBH’d. In fact, one of the MANY things that I love about him how he is happy to be himself and be unaffected by how people see him and long may that continue..
All in all it’s been a positive four years despite my concerns for the future. In a perfect world people would embrace him as the unique individual he is but the most important thing is that he doesn’t try to hide who he is in order to fit a mould that was never designed for him.
For anybody who differs from the ‘norm’ – this quote is for you.
I’m not weird, my reality is just different from yours.
A list of blogs by Autistic adults
A journey towards happiness with depression, autism and lots of chocolate
Book news, views and amusing musings
Hiding in the autistic closet, deciding whether to come out.
the erratic journals of a happily incorrigible lady-child
Bumbling along enjoying life one day at a time
Sobriety. Motherhood. Musings.
This site is about the highs and lows of being a writer and poet. And about the mishaps and adventures along the way.
The ramblings of an ordinary Cornish maid.
ONE BEAT AT A TIME
Awareness, Education, Research & Quips
Rewriting my story as a late-diagnosed Aspie
Living well on the autism spectrum - just out of public view
What did I do next?
A father's perspective on stillbirth, grief and parenting after loss
working, mothering, thinking, living
All about being a Frenchie Maman in London but not only!
It takes sunshine and showers to make a rainbow. Our life over the spectrum. #AutismExplained
UK daddy blogger chronicling life as a stay-at-home dad
#ActuallyAutistic - An Aspie obsessed with writing. This site is intend to inspire through sharing stories & experiences. The opinions of the writers are their own. I am just an Autistic woman - NOT a medical professional.
Mum with more questions than answers. Imaginary fitness guru. Healthy eating experimenter, sometimes.
From half empty to brimming over