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Dear Parents, Caregivers, Doctors and Educators

IMG_2011.JPGDear Parents, Caregivers, Doctors and Educators.

I’am Autistic but before that before anything else I’am a human being. I need food, water, shelter and love like anyone else to survive just because I’m autistic those things never change it just needs I may also need extra things being done or those things being done differently.

Please don’t force us to have friends. I know you probably think your doing what’s best for us so making us play with those kids in the playground will solve all our problems but I’m sorry it won’t. It will just make us more uncomfortable so we will retreat back into our own world. Ease us in gently, listen to us ask us what we want even if we can’t verbally tell you we will tell you in other ways you just need to be patient. We don’t want to be forced to play with others when we are not ready because it shows us we are indeed outcasts and again we are failing you.

Please don’t ever say we can’t because we can and will! To us the sky is limitless, you may have your doctor degrees and teaching degrees but really you know nothing about is becauae you can’t because we are Jacks in the boxes but we don’t perform for anyone. Help us reach our full potential instead of putting restrictions on things YOU “think” we can’t do.

Please don’t pity us because then we will think we are broken and something that needs to be fixed, honestly we often think you are the ones who needs pitying. You go at such a fast pace that you miss so many wonderful things around you.

Please don’t force us to fit in your square peg hols, we are circles so no matter how much you push us we will not fit! But we will get bruised, bent and broken….why do you want to break us?

Please don’t yell at us for things we can’t help, I know our we can be can be frustrating. Chucking the food you have slaved over for hours down the toilet. The texture is bad but so is the smell I gag just looking at it so I needed to dispose of it quickly. switching all the lights in the house off, they were hurting my eyes and head why is the world so bright? endless hours of screaming because it’s raining but today is Sunday and every Sunday we go to the park but now we can’t and my routine is messed! Lashing out at anyone who tries to hug us, making high pitch sounds at the supermarket then eloping because Someone else has just made a loud noise and that is NOT OKAY!

Please don’t say we are not trying because we are trying as hard as we can and we try every hour of every minute of every second of every single dam day! We try because we love you because we hurt when we know we have caused you pain and frustration. We can’t express to you what we are going through but our reality takes everything in us to make it through without a fight. Every food we put in our mouth we are trying not to puke it back up, every trip to the shops we are trying not to meltdown, every noise or sound we form we are desperately trying to form a word so we can speak to you, every kiss and hug we give we are trying not to squirm because physical contact burns us,every time we look at you we are trying so hard to give you the best eye contact without melting down because the puzzle inside overwhelms me. Even when you think we are not trying like when we are already in a meltdown we are, we are trying to stop and regulate our bodies and we try so dam hard so please don’t judge us just love us.

Please don’t leave our siblings out because you are focused on our needs. They are too fighting a silent battle so they need all the love and backup they can get. They are superheroes often sacrificing themselves for there quirky sidekicks so please don’t sacrifice them too. Half your attention and if you can’t do that let the siblings know you and we love them and our thankful for them everyday.

Please don’t force us to look at you, it hurts so much. We are listening to you and respect you but we don’t have to look at you for you to know this. We wouldn’t make you run over hot Cole so please don’t make us look into your eyes.

Please don’t force us to speak, we know how desperately you want to hear our voice. It’s in every parent book and is often referred to as the most magical milestone we will ever go through. You know how much pressure that is on us to fulfil such an important milestone? We know we should be doing it with ease, maybe we had already spoken but our voice was taken away as fast as we got it. It’s frustrating we so want to make you happy and just speak but putting everything on us speaking is not healthy because for some of us we won’t ever speak and yet again we will feel like we have failed you for something we really can’t help.

Please help us connect to you in other ways. Speaking is a way for us to connect with each other but it’s only one way, there are millions of different ways you can teach us to connect. Cards, signs, talking devices, writing, drawing, dance. These are just a few so please think a little outside the box and help us connect.

Please welcome and join our world instead of trying to push us into yours. When you join our world by taking part in our behaviours or sitting silently with us while we are on our tablet or lining up our many objects shows us you are accepting us and our world with welcome arms. This will make us more willing to connect with you as well.

Please keep our routine in check as much as possible and if you can’t please warn us. Our routine is the only thing keeping us together so when it is disturbed our whole world is tipped upside down. We are not being spoilt or being stubborn we are just trying very hard to keep it together so keeping everything in order is key. Imagine you spent months putting milions of pieces of paperwork in organised files but then it is messed up meaning you have to start all over again. Knowing this process will take you months and take you away from learning other important skills to survive on this alien planet.

Please be patience we can take a lot of time to achieve simple tasks but we promise if you wait we will show you an amazing things. Listen more because we sing beautiful silent songs just for you.

Don’t cry for us but cry with us, we are not something that should be cried over, we are not broken, we are not dying and we do not need to be fixed. We understand how scary this whole thing must be for you, parenting must be terrifying one minute you are going out drinking and partying then the next you look down and you see this kid in your knee who is depending on you to survive and when you add Autism into the mix that kid will grow into an adult and may still be depending on you. It’s scary for us as well having to put all this trust in a person you truly can’t understand or connect to no matter how much you try so we have just got to trust that you will love and take care of us. When things go wrong we too want to cry so please cry with us let us know it’s okay to cry and that you are feeling this pain too, just don’t cry for us.

We know once you probably dreamt of flying but now your having nightmares about dying. Just don’t, we don’t know what will happen in the future but we will be okay because of everything you have and continue to teach us. You can still fly but now you don’t have to fly on your own.

Laugh, smile and love us! That’s all we want like anyone else we just want to feel and be loved! We may not show or accept love in the traditional ways but that does not mean we can’t feel it or show it. Don’t force us to hug you but embrace our other ways we have to show you we love you. You are our maps but we are your compass so please hold our hands and follow us into the doors of life, please don’t make us go on our own. We need you, we want you, we LOVE YOU.

“Maybe one day, I won’t be this way, Until then we’ll get by” ♥️

Love from
Your Autistic children, teenagers and adults.

Why do you do that?

IMG_1949I think the most asked question which autistic kids/adults and their parents get is ”why do you/they do that?” Mostly because most people think whatever we are doing is an inconvenience to them or sometimes they are just plain curious.  What we do is no concern of the public but I know many families who often wonder why their kids are doing these ”bizarre things” So I’m willing to share my insight on the things I do and why I do them in hopes it can help families with their loved ones but also bring general awareness to you all not to judge if you see a child/adult doing something well ”strange”

”Why do I always look at my hands and wiggly fingers?” Have you ever looked at your hands?? they are the most interesting things in the world, they can do so many different things and move in so many different ways. All my fingers in perfect order moving in a rhythmic order its calming to me like the sight of a quiet ocean gently coming in and out to shore. Looking at people’s eyes are like looking into caves of hell and fire lots and lots of fire god how it burns but my hands they are not fire they are birds which are dancing to silent songs, they are my calm they are my muse.

”Why do I often make a sounds or hum when I’m happy/sad/angry”? Well, why do you smile when you’re happy or cry when you’re sad?” It’s just something that happens my sounds are part of my voice is how I communicate but it’s also a reflex just like smiling when you’re happy or yawning when you’re tired. I also hear a sound on the tv or a sound while out and about. If I like the sound it will often become ”my sound” which means I will echo it over and over again exactly the way it sounded originally. At the moment ”My sound” is a sound which sounds like an old squeaky door opening in a horror film.

”Why do you only eat a certain food?” Because I like everything the same including my foods, a different food can throw me right off. It scares me because it wasn’t what I expected and now it’s ruined my whole day just because of one different food! It’s crazy but its true I can’t help it, what if the texture is weirder from the others? what happens if it’s too crunchy or too soft? too sticky> too gooey?  or the taste is all wrong, too spicy? too plain? Having all the same foods creates less anxiety and means I don’t have to starve myself.

”Why do you meltdown if your routine is changed?” Think of it this way if you had spent ages and ages developing a careful plan of this new universe which you have crashed landed on with no instructions so you had to make your own but now someone has changed something which makes your very careful thought out plan fall to bits. It’s frustrating and really really scary! Without those plans I have no idea what to expect or whats going on, I depend on those plans to live and without them I just fall apart. I scream, shout, cry lash out because I have no idea what to do or how to cope now I’m alone and have to waste my time that I need to use to get to know my peers around  to now developing new plans which I’m sure will get ruined again and again but what choice do I have?!?! why cant things be the same?!?!?

”Why do you move around so much?” My body is fueled by a never ending motor, imagine a hyperactive squirrel which had accidentally taken a sip of an energy drink well that’s what my motor is. This world is so big so noisy so many things to see so bright! I have to keep up I have to always keep moving always move my body as that motor is having to work so hard to keep up with the world around me and if it stops even for a moment it might stop for good…. Jumping, flapping my hands, rocking, hopping, spinning, running, pacing my body was meant to move it needs to move.

”Why do I have to keep stopping writing just to engage in a stimming session?” Why do you have to stop and sneeze? It’s just an impulse I have, it’s something I have to do plus it feels really really good and regulates my body so I can concentrate and write a beautiful piece just for you. Just keep stimming, just keep stimming.

”Why do I line everything up?” ORDER!! this world needs order it’s so chaotic, so crazy there is no structure here and all my instructions to this world are all in this weird language that for the life of me I can’t understand so I have to create my own order. Lines are great don’t you think? who does not love lines?!?!? they keep everything in its place and everything has its place, the world is less noisy, bright, crowded, scary, overwhelming when everything is in a line. Straight and perfect unlike this world which is curvy and messy.

”Why do I only like even numbers?” Odd numbers are the numbers of the devil they just don’t feel right! every tv has to be turned up not too loud but on an even number, I have to have an even number of  pieces of food on my plate, even numbers make me feel happy and calm where odd numbers make me feel anxious and restless

”Why do I chew everything” It didn’t taste nice…that shopping receipt I chewed, nor did those lego bricks or that computer cable or those rubber bands, they all tasted awful and made my jaw ache but I have this need to chew like you have the need to breathe. I don’t even realize I’m chewing most of the time until someone mentions it to me.Our brains all have a special part which controls all of our sensory needs well you see mine is totally busted its all wired wrong meaning I need to chew all the time I know how unattractive and silly it makes me look but I can’t help it. This does not mean I’m a dog or an infant it does not mean you can challenge my academic abilities it just means my blue wire is connected to a yellow wire instead of another blue wire.

”Why do I  have obsessions?”  I become obsessed with things normally tv shows which is kinder awesome as you may like the same tv show as I do but believe me when I say you will never like them as much as I do, when I like something I will learn everything I can about it, if its a tv show I will watch it over and over without getting bored with it because if you love something so much then you will never get bored of it right? I have so many friends say they love something but then become bored with it after a while…it makes no sense? This world can get really lonely you know like everyone seems to know what they’re doing, they seem to have special groups where they fit into and special people they connect too but I don’t…. So my interests become my special places and my special friends, when I’m watching a favorite tv show or doing a favorite hobby I feel like I finally belong, I finally feel secure and safe in a world which is so dark and scary

”Why do I script?” As a way to connect, because of its fun, because I feel safe when I do this, I feel like you even if the way I’m talking is slightly different. Sometimes what I hear on tv is really funny so I just have to echo it why wouldn’t I? like I said when I like something I like something an awful lot even the words and sounds they make.

”Why do I crave pressure and weight?” I feel like a floating balloon, I feel like I’m just floating I don’t feel like a real person I need to feel like a person I need to feel like I’m existing. So at times, I need a big tight hug or to be jumped on while I lay on the floor or to be squashed into a tight hole. It’s why you may find me tucked between the sofa or a gap of the fridge or why I have a hundred layers of covers on me even though its summer time. My blue wire is connected to the yellow wire meaning I don’t get that natural body awareness that we need to make us feel like a floating balloon so I try to make my own blue wire for it to connect to.

”Why do I flinch with touch?” Your touch hurts… It’s like you have just poured a thousand of ants all over my body and now pouring acid onto my open wounds….Believe me, I’m not being oversensitive so please don’t think I’m and force me to hug you, do you really think I’m happy that my tangled wires prevent me from giving and accepting love in the most natural ways created? Do you think I really enjoy not being able to give my family a hug when they are hurting? Do you think  I like having to explain to them how I can be touched by some people but others like them it still hurts? Of course, I don’t its hell but please know it’s nothing to do with any of you. It’s just my tangled wires I can’t make sense of someone touching me

”Why do I hit my head?” Sometimes I get too much information coming in all at once and the mental pain that I endure because of this is so intense that the only thing that can help is causing myself physical pain. So I hit my head as hard as I can to try and get it to stop to try and get everything to pause just for a moment. I just wish I could get my brain to catch up quick enough, it hurts so bad. I dont do this for attention I do this because I’m hurting so badly that I coulndt even begin to explain it to me so please don’t judge just help me keep myself safe

”Why do I cover my ears?” Loud sounds are always louder for me, I hear them so much more than you do but I also see them and I also feel and taste them. All my senses get so overwhelmed that I just can’t cope. Loud sounds taste so bitter like nails covered with blood and pure lemon juice. Lound sounds looks like explosions of fire,knifs,bombs, and death. Loud sounds feel like stinging nettles, hot burning cole, and hedgehogs. Loud sounds sound like chalk on a chalkboard, bombs going off, cars crashing into explosions, fireworks, lions roaring the kind of noise which leaves a ringing in your ears, the kind of ringing which never goes away, high pitched ringing which makes me wish I was dead because I would rather be dead than be pained by that awful ringing. I hear the ringing, and smell the awful smells and feel the burning cold for much longer as well even when the original noise which caused this has gone I’m still hearing it, it takes longer for me to come down from it.

”Why do you smile and laugh to yourself?” Because The world is beautiful yes it’s very scary and loud but it’s also beautiful and because I have autism I can see some of the worlds hidden beauties which are often hidden from the rest of you. I smile because I’m so glad to be alive because I get to see everything which others miss. I get to see the way the sun shines on the water, I get to hear the sweet sound which water makes as it falls onto the ground, I get to see the birds arguing with each other like old married couples. I get to feel sand running through my fingers and in between my toes, I get to see the crinkles appear in my sister’s eyes when she laughs, I get to feel my families love in other ways than affection. Little things amuse me not because I’m not bright but because I know those little things are what makes the world go round, I notice all the little things because unlike everyone else’s fast pace lifestyle I walk around in this world noticing everything from the cracks on the floor to the sun in the sky. I’m happy I can see the small things because those are the most beautiful things in the world, the precious things because so many often miss them. I count all the leaves as they fall from the trees smiling as I do it because no one can steal this moment from me because no one can truly understand how much joy a simple activity can bring me, every Autumn the tree’s fall on off the trees but then every spring the trees grow new ones back how isn’t that amazing?!?!?! We are seeing real life dying and then living right in front of our eyes that’s enough to make me smile and laugh out of pure joy. I stand there for hours trying to make sense of it all as I see the beauty out of something so ”small”.

There are so many other things I do but I will be all day if I was to name and explain them all so I have done my best to explain a few. There is always a reason to why we may do something even if it’s as simple as ”we do it because we like it” The things we do are as important as the things you do, they may look weird and they may be different but they are what make us who we are and who we are is magical if you want to know more just ask please don’t stare and before you judge us ask yourself are we hurting you or anyone else? if not then let us do our ”thing”.

 

 

I want to be beautiful 

IMG_1919I’am autistic but before that I’am a girl, a women, a lady, a female however you want to address that title.

I know I’m not into all the typical girl stuff like make up, dresses, highheels, flaunting my self at guys. But you see I still have massive insecurities about the way I look and truly I just want to be beautiful…

I want someone to look at me and say I’m beautiful and really mean it, I want my eyebrows to just not be my eyebrows…every joke I hear about them makes me want to puke because it hurts so bad even harmless jokes I think because I can’t speak about my inscurties they think I don’t have any but in reality I have loads just like you…maybe even more because my autism can be a massive insecurity….

I want to be beautiful but wait what is beautiful? Like what is the definition of it? I know I’m not beautiful but my sisters are but I can’t really tell you what beautiful is just that I’m not it.

My biggest fear is to become fat, I know plenty of people who are overweight and beautiful but you see I’m not beautiful so being overweight would make it worse. I always hold a pillow or something over my stomach when I’m sat/ laying down because I’m insecure of my stomach.

I wasn’t going to write about this as I know a lot of people will feel like I’m just fishing for compliments but really I’m not, ask anyone who knows me they will tell you that I hate compliments, they make me feel awkward and uncomfortable. I don’t need reassurance either I just feel like I needed to express myself somehow and this is my blog I can put whatever I want on here as long as it’s not harming anyone else.

someone once told me “to be called beautiful you must be beautiful on the outside and you peri are not that maybe pretty but not beautiful”  I have relented that and have taken it pretty literally, I don’t even think I’m pretty so what I’m I? I always thought you could be beautiful on the inside as well and that everyone is beautiful in their own way but apparently there is a certain look that only  clarifies as “beautiful”

Im all for laughing at myself but my looks is a sore spot so when you joke about them they are the jokes which keep me up and night, I even hate myself for not being able to take them as a joke the way they should be taken…well I hope they are jokes…are they?? See this is how my insecurities work, they constantly make me misjudge and analysis people’s intentions.

If i care too much I’m a drama queen if I care too little I’ m a robot….life is hard when your not 100% sure how little or how much you should be feeling or what you should do when you are feeling something.

“I want to be beautiful but I don’t know what that is”….

When I was nonverbal

As most of my long term followers are aware of  I was not fully verbal until I was 10 years old, I said my first word at 6 years but stopped saying much else until I was 10. I can still remember my time being nonverbal and preverbal very clearly, I remember the pure frustration and isolation I felt not just around me but within myself as well. I feel like I need to give the people who are still struggling with their voices a voice and an insight to what they may be going through to the public by sharing my experiences of when I was nonverbal.

My brain: your hungry you need to ask for some food

Me: …..

My brain: come on just say dad I’m hungry he’s right over there

Me: …..

My brain: Come on, thats it walk up to him

Me: ARRRRUGHHHHHAAA!! *falls in front of dad and begins to scream*

My brain: oh here we go again, you know what you want why cant you just say it?

Me*full blown meltdown* AAAAAAAWAAAAAAAAA! NAAAAAA NOOOO NAAAA AAAACAAAAAAAA!

MY brain: you did this the other day when you was in pain but coulndt tell your siblings so you just screamed, cried and was aggressive look he’s asking if you want food you just need to nod

Me: AAAAGHHAAAA!!! MMMMMMMMMHMMMMMMMHMMMMMM (Loud humming)

My brain: too far gone I suppose….

This is how most days went when I needed something like food I knew exactly what the problem was but was unable to express my wants, needs or feelings which resulted in frustration and meltdowns.

I remember my younger sister made me play barbies with her she was of course making the barbie speak with mine, she then stopped and looked annoyed but I was not making it talk she was too young to understand that I was not doing this on purpose and she was also too little to understand that despite not being able to speak I was making the doll communicate even if the things I was making it do might seem well odd. I would often undress the dolls as my sister would often say it was a hot day in the world of barbies, I would make the doll jump around happily or I would move it wildly if it was suppose to be feeling a negative feeling. I would find this activity hard to join in with as not only did it involve imaginative play which I found really hard which is why my sister would often take the lead but it also involved a lot of interaction between speech as so many kids just like my sister are brought up to only listen with their ears and to only focus on the physical voice of a memes of communication and interaction.

I also remember every time my older sister who I was very close too would tell me she loved me before she went out and I would just seem oblivious to her and the world around me until one day when I gained my voice I said ”I love you too” she cried so much (happy tears I’m sure of it) like in a typical family it becomes a simple thing to say I love you and to get it back but when your an autism household that all changes sometimes you have to listen to us with more than your ears and I was confused for a very long time why she was so shocked and why she was so happy that she cried tears just because I said something that I have been showing her all along. Didn’t she notice when she came in the room I would jump about, happy noises, flap my hands, the way I always wanted to be held by her and how I would stock her school bag with all my favourite toys and foods. As I have grown I have come to realise that she probably knew that I loved her back and the whole actions speak louder than words but when someone is starved of something like my family was starved of my voice for so long they long for it, they dream of it, they need it to confirm things. When I said I loved her I was not just telling her I loved her I was letting her into my world I was connecting to her in a way which took everything in me, the words were the thing that meant the least it was the actions and the wait behind it.

Me: Eh oh, Eh oh, time tubbie byes byes tubbie byes byes eh oh, eh oh (scripting Tellietubbies)

Doctors: well it seems like she can speak fine and is just being lazy with requests

Doctors: what did you do at school today?

My brain: well you did some drawings and some math then you played outside then you had a story read. so come on tell him

Me: ”Eh oh Eh oh, we can fixs its” mix of (Tellietubbies and Bob the builder)

My brain: No peri come on if you can say that why cant you say your own words?

Doctor: Peri? what did you do at school today? did you do some drawings?

Me *nods*

Doctor: what did you draw?

Me:……

Doctor: Peri?

Me: AAAARGAAAHAA!

My brain: oh boy….

I would script a lot but often people would think just because I could script then I could speak y own words too but this was wrong as I was pretty much just being a parrot I was just repeating the words I had heard in the exact same voice and the exact same way this is what I call being ”pre-verbal”

After a meltdown I would often lay on my siblings lap or parents while they stroked my hair and talk about how they wished they could see what was going on in that head of mine. Oh how I wanted to tell them oh how badly I wanted to scream from the rooftops who I truly was because there was so much more than just this silent girl there was so much more that met the eyes, I had amazing stories to tell stories than had never been heard before stories that would change the world, stories that would likely be trapped in my head forever.

If I had the chance to express back then to my love ones if I had a  chance to tell them everything I so badly wanted to say I think it would of gone like this:

Please love ones don’t cry I know you are scared for me, I know you feel my frustration, I know you just want to hear my voice say those 4 little words of “I love you too” I know you want me to be like other kids chatting about our favourite movies and weekend plans but please don’t cry because when you cry it makes me feel like I have failed, makes me feel like I’m failing at the one thing that could finally connect me with you…makes me feel like I have failed you. I sing a million of songs and dance to my own melody but my songs are just too precious and delicate to be heard by the world they are too sensitive to be heard by original ears but if you just breathe in and dance with me, spin around with me me you can almost hear my song a song almost quieter than silence but even more beautiful and maybe one day I will be able to make my songs loud enough for the world to hear but if I not that’s okay because I don’t need to speak to communicate with you. On some days family I may act like I have no idea what your on about but I understand every word I’m just so tired trying to connect with you, trying so hard with your speech regims and endless word card games I’m trying so hard but I’m so tired so please listen to my songs come real close because they are just for you, where talking can be for anybody anyone can talk to anyone but you see these silent songs are just for you because I love you” the only way I can express to you my pain is to scream and cry, it’s like my voice is in this prision made of titanium bars which can’t get out and maybe it never will maybe stJude has my voice the saint for lost causes because that’s what the doctors call me right? I can’t express to you what I’m going through but please don’t give up on me. Talk to me, play with me, give me patience, don’t cry, don’t get angry I’m trying. I know you love me and one day I will speak to you even if it’s not with my voice until then we will be alright..

 

Now I did speak and I’am thankful for that but really I’m more thankful in finding and improving my ways to communicate. Speaking and communication are not the same thing you can speak without cominucation and you can comminucat  without speaking and then you can use both together but it’s not always needed. Writing will always be munch first way of commucaiting as I feel like without writing I would not be able to truly communicate like I’m doing today because writing is much more than a hobby, interest, love…it’s my voice my only voice because to me a voice does not need to make a sound a it just needs to be able to express feelings, and tell a billion of storie. That is what my voice does for me and without it I will be lost….

So of course my vocal voice is helpful when telling someone I’m hungry or that I hurt or to fulfil simple requests and demands but it is not my “voice” it does not show everyone the real “Peri” and this journey has helped me realise this it has helped me to realise that all those years ago I wasn’t striving to speak, I was striving to communicate…striving to connect with the world..

 

 

What is a miracle?

The Wikipedia’s definition of a miracle ”is an event not explicable by natural or scientific laws. Such an event may be attributed to a supernatural being (a deity), magic, a miracle worker, a saint or a religious leader”. A downpour of rain in the Deseret would be called a miracle, Christians often called the acts of Jesus and God miracles, a terminal ill person becoming 100% healthy is too often called an miracle. Many of us think for something to be a miracle it has to be something  big something so rare..

However in the Autism community we see miracles in EVERYTHING. a simple look in the eye, a simple instruction followed, a simple different food consumed, a simple hug or kiss on the cheek, a simple smile, a simple photograph, a simple itchy jumper worn, a simple school report passed, a simple playdate with a friend, a simple ”I love you” a simple meltdown free day, a simple hand hold….these are all sweet miracles for an Autism household. They may seem like nothing to you but for us they are the most amazing miracles that we have ever seen,for me a miracle is something that’s not thought to be able to happen but it does despite everything and everyone doubting its ability to do so. All of these ”little miracles” slowly gather up and becomes an spectacular, grand, beautiful miracle.

There was this girl who had a permanent lost&perplexed expression on her pale almost greyish face, she could not speak nor communicate in any other way she was completely shut in her own head which looked like no desire to reach out to anyone. She could not feed herself because she lacked the coordination and dexterity in her hands so got the food anywhere but in her mouth, she was a angry child who would often beat  up her loved ones even when they were just trying to help, she could not show affection nor accept it and would often react with violence. This girl could not deal with any type of noise  preventing her from going out anywhere because any stimuli from the outside world would result in a meltdown which would last for hours, and hours, she would scream until she was red and had forgotten what even made her do it in the first place but she would know she was angry so she would carry on due to dam right confusion and the lack of understanding towards her emotions.  As well as the screaming she would display in self injurious behaviours until she was black and blue this would happen daily leaving her family walking on egg shells around her, she would puke up any unfamiliar food if it so much as just touched her lips, she would gag and scream if anyone made her put clothes on especially socks&shoes. She would spend all her time in a plastic pool the only place she truly felt happy and at peace, she would spin around in circles, line her toys up but never play with them, she would jump and flap her hands, even with sign language she would refuse to learn any other sign apart from the one for ”toilet” which she would use over and over ad over instead for its proper use.  She would hide in her sisters underwear draw while screamed because her sister went on holiday and she just could not cope without her, she would watch the same episode of Tellietubbies on repeat and would meltdown if the routine was changed. At school she would not scream, lash out, or anything like that, most of the time she would fade into the back ground, quietly doing what everyone else was doing so teachers would just assume she was just lazy or stubborn apart from the times when things got too much and she would hide under the table while highpitch squealing. She was unwell all the time because her body’s immune system was weak from the lack of nutrition she was getting from the days where she would stop eating because all foods made her gag, She would be awake every night for months at a time because her body would not switch off apart from the nights where she would scream and cry herself into utter exhaustion. She would have to be restrained from hurting herself and others but as she got older she was physically overpowering full grown adults. She was soon able to learn words but could not express her needs or wants so became silent once again, she was incontinent and would have accidents throughout day&night, she had no friends and could not look at anyone in the eye.

This girl was not diagnosed until 11yrs old because the lack of desire and understanding from professionals and doctors around her, She had to go all the way to London just for her family to be told something they knew all along… ”She has Autism”They were told that her diagnosis was grave and that she would never speak fully, she would never finish school, she would never be able to live on her own and would need 24/hour care so the possibility of her needing to go into a home was high. She was diagnosed with moderate to severe Autism and got into a special needs secondary school. The school was a gift to the girl as before getting diagnosed she was refused from the school.  When she started she started making progress even if it was just little things at first. She got her first tick on the reward system for eye contact, she smiled more, her meltdowns was not as intense nor frequent, she made a few friends, she was talking more, she was contemplating work and was working at a proper grade level, she was eating more, she said ”I love you” to her family, she used the phone to talk to her new friends even if it was just for a few seconds, she won competitions for her writing, she was the best swimmer in the class, she listened to instructions, she enjoyed music lessons and was able to listen to music without melting down because of the intense pain of the noise, she slowly very slowly started to join in drama lessons and actually started requesting to go to drama club, which lead her getting lead roles, She away with the school for 5days&4 nights for the first time ever, trying something new each day, she became a favourite with students and staff, she joined in more playground games with her fellow students, she took on a caring role towards other students….She regressed in yr 10 no one knew why but its like everything she had learnt had gone and the old lost girl everyone once knew was coming back, she was back to wearing ear defenders everywhere she went in school, she hid in cupboards and blanked out in lessons, she would rock in her chair in every lesson violently,  she carried around a cuddly penguin, she would sit blankly and not do anything, she would refuse to play with her other students and isolated herself, she lost her words and struggled with selective mutism, she stopped eating, her meltdowns increased at home , she refused to wear clothes, socks and shoes, she became unwell again, cbeebies was back to being her favourite tv channel, her grades went down, she was lost again, trapped in her world, problems at home was making her feel unstable and scared but she was unable to tell anyone as she didn’t know how. Instead of the staff of the school trying to force her out they got down onto her level and communicated to her in ways which slowly got her to progress, they talked to her through comic strips, letting her express herself through her writing, they would ask her about her penguin, tell her it was nice and make conversations about it, let her include her interest of penguins as much as she could in her work, they gave her as much patience as she needed, they let her know that she could tell them anything but she didn’t have too, they told her if the fire alarm was going to go off for a test so she wouldn’t freak out because of the minor change in her routine, they would let her know well in advance if anything was going to change. Slowly the girl made progress and was back up to speed, she had a good set of friends and she was often referred to as one of the more chatty students when she was with them, she was often seen as the most able students, top of the class in most lessons though English was her favourite, even developed a cheeky side which of course the teachers had to rope in but secretly loved she was testing the waters as it was another milestone she was hitting.

Then She joined 6th form in the same school of course, there was settling problems, it was different from lower school it felt like a step backwards instead of a step forward this caused the girl to develop feelings of depression and she regressed again throughout the whole first year she was very much the same as what she was like in year 10 but then improved towards the end of it. The girl became top of the class again and even organised and took part in a charity  walk for a sick teacher and a year after that completed a slideshow for the sick teacher getting every student involved. She then started having problems with friends and family problems, the family problems amplified the problems at school, she started having violent outbursts at school, she pushed a girl out the fire exit door, she started running away, into the school’s woods and even out of the school grounds, she would have weeks of really good and then weeks of really bad, In her last year at the school she struggled to censor her emotions and behaviour resulting in meltdowns and self disruptive behaviours, she began pubety very late meaning she was going through all the hormones and the hormonal strops your suppose to be having at 13 at 17-19 and because of autism they affected the girl much worse, she didnt know how to deal with any of this, she would have member of staffs look for her with walkie talkies because she would often vanish from lessons, staff found it hard to control her, her violent outbrusts were coming a regular thing, throwing water over two students, chucking stones at student, chucking a chair at a student, yelling, swearing, headbutting, pushing members of staff, she would spend her time in school walking around the playground and up and down corridors when she was suppose to be in lessons, she was suppose to be taking GCSE’s but hardly turned up to any of the classess and when she did she was too distracted to follow instructions and concentrate, she stopped caring for herself and others, her fear of leaving school consumed her. She was excluded for the first time after her taking part  in a dangerous conduct, after the exclusion she came back to school, she completed her work experience in a primary school which she loved years before that she had completed 2 other successful work placements at nursery’s despite it being a task in finding somewhere who will take her, she completed all her GCSE exams and completed her leavers video, and helped other students to complete theirs, She was still unsure what she would do though once she had left school….Something happened resulting in the girl getting excluded again and was asked not to return to school, she only had 2 more weeks at school left but the pressure was too much for her, She became angry at home, snapping at anyone around her, she was back to having nothing but this time she was aware of it and it sucked, she suffered from depression and anxiety, she was put on different medication but nothing worked.. She was able to go to the school’s prom and was also let into school for the last week where she was able to say goodbye to the staff and friends… She collected her GCSE results from school, She got 2 C’s in two of her exams which was amazing, She thought she would never take GCSE’s let alone get a C, professionals all those years ago told her family it would be impossible.

2 weeks before back to school and college etc the girl got a place on a Access to higher education course a course which would help her achieve her dream on going to university, the girl wanted to redeem herself And get back on track.

3 weeks went by and she was told by 3 member of staff on the course that she was either going to fail or drop out of the course so she needed to go down to an easier course…the girl refused and kept on refusing throughout the course no matter how hard and painful it got. The girl had no support or belief from the staff but she had her friends who showed her more than enough. The course has now ended and the girl passed the course and even got the grades she needs to go to university to study special education so she can teach in a special needs school one day.

now this girl is sharing her story to you via this amazing thing called WordPress, a true miracle for the girl as it gives her a true voice to share with you all. Now back to my question what is a miracle? Is it that I can now speak? Or is it that I’m going to university or is it that I’m sharing this with you all today? Like I said a miracle does not have to be something big it can be something tiny like a simple smile on a bad day, I personally know that miracles don’t just happen they take a lot of work, they take a lot of strength to battle for years and judgement and sometimesjust breathing takes everything you got.

I know I…I mean this girl could not of gotten where she is now without the support and belief from her family, friends, educators, followers.  she also knows she has not recovered from Autism as that is impossible so she knows that she’s still going to have days where she’s going to struggle just to get by and she knows she’s going to have to prove a lot more people wrong but she she knows she can do it because of all the support she gets from everyone I have listed above, she knows Autism does not defy her Autism is a miracle in disguise, you are all my miracles and I’m thankful for every single one of you.

“They say you can’t”

“So you say I must”

~Thank god for small miracles~ ♥️⭐️

Where’s my head?!?

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Sometimes I forget I have a head…..and shoulders….and arms….and legs…in fact sometimes I forget   I have body at all.

Like many people with Autism I have a very low body awaness which causes me to even forget that my limbs are attached to me it’s the most weirdest sensation ever to describe it kinder feels like I’m just floating. For an example you know where your hands are without the need to touch them but I constantly  have to shake them or grab onto them so I can be aware that they are there. I often bump into things and people or trip over because I can’t adjust my body in order to protect myself from a slope or a obstacle because of the lack of body awareness.

I will often seem all floppy like a rag doll even when I’m full of beans, I walk like a “windmill” as I walk I rock side to side and waddle Lila a penguin this is all part and parcel of low body awareness. To try and help myself feel more “attached” to my body I will jump, shake my hands, constantly touch my face. All of these facts help me to feel more grounded and attached to my body it’s also why so many people with Autism love the tight pressure of tight hugs or confined places because once the weight or pressure is placed on our body we become more aware of where our body is in space and time.

(I told you it’s hard to explain)

My head and shoulders are the worse effected which is the same for a lot of others people with Autism too which is why weighted jackets have the most weights around the shoulders as that is where the most sensory therapy is needed. Though the head is harder to ground as so many people can’t imagine actually forgetting your head…..well it is possible

anyway so when I was younger I use to stand on the sofa on my head so I had the constant grounded feeling. On bad days I will get my siblings to push hard against my head and face or I will often do it to myself with two hand pushing down on my head for 10 seconds 5 times and I will do for as long as it takes these are called sensory therapies which helps us feel more grounded and safe. There is another thing which helps me feel safe which includes having a blanket or my weighted lap pad on my head or even my hood up constantly and though this may look  “strange” to you it makes sense to me and millions of people who suffer from low body awareness.

It makes me feel safe by letting me know exactly where my head is so the next time you see someone with maybe a obsession with there good always being up or maybe a blanket on there head don’t judge because which may seem weird to you may give comfort to them.

You don’t always have to understand everyone’s journey just be accepting and welcoming.💕

 

 

Pleas love us a little bit more this Christmas…

I’m truly horrible at Christmas time I don’t even want to be near me, I’m rude, snarky and very hard to love at Christmas. I wish I could be easier at Christmas I wish I could go through  the day without making someone cry or ending up in tears my self but that’s something that seems to be just a far off dream.

Christmas is hard for many of us on the spectrum, the change of routine makes it impossible for us to fully relax everything is different and out of the ordinary, our already very upside down world turned even more upside just for a baby born 1000 years ago or a guy in a red suit bringing presents? It just confuses us even more and we are already very confused generally. Having to worry and to be made to feel guilty about behaviours that we can’t always help just so we can get a present…..

The different smells

The different sights

The too many people in a cramped house

The sounds of buzzing toys, ripping paper,people laughing, talking and even shouting.

its nearly impossible to think of a holiday that is suppose to bring so much joy to milions around the world also brings so much pain to others even more for those on the spectrum. there’s also a lot of feelings around Christmas I’m from a big family meaning there are so many different personalities and emotions some are jolly and full of christmas  cheer others are passive aggressive full of bitterness, lonely, stressed and just dam right miserable. I feel all these emotions all at once all on top of the feelings I’m already feeling you think I can’t feel but really I feel everything way too much. I step into a room full of so many different feelings I have no idea what to feel or what not to not feel, how I’m I not suppose to react to all these different feelings.

so much tension

so much noise

so many feelings

ARRRRRRRRAUGGGGGHHHHHAAA!!!!!!!

I cant take it anymore so I’m mean…..I’m rude….I scream, I swear, I’m snarky and then I cry I cry until I can’t breathe until I’m gasping for a breath. Crying because I’m overwhelmed crying because I’ve ruined yet another Christmas crying because I want to stop this I want to stop but everyone thinks I don’t because I make them believe that I don’t because I don’t know any other way I’m so sorry.. 😦

(Lyrics from one of my favourite Christmas songs ~ Shane Dawson)

I’ve never seen reindeer fly
I’ve never heard the sleigh bells ring
I’ve never seen a snowman come to life
I’ve never heard the angels sing
But I hope and I pray
That maybe this Christmas day
That’ll change.

Maybe this year I won’t be sad on Christmas
Maybe I’ll have a happy holiday.
Replace my heart ache and my pain,
With mistletoe and candy canes
This Christmas could go my way…

Christmas is in fact a really stressful time of year for everyone but it may be even more stressful for someone with ASD but in a complete different way.

we may get too excited or we may want nothing to do with it so weather we are hyperactive, too loud, too excited or rude or hide ourselves away please just know we are not meaning too act this way, we want nothing more to join in with the festive fun But  our brains just won’t let us we want to show our loved ones we are thankful for everything they have done but we just can’t no matter how hard we try it all goes wrong.

So no matter how hard we are being this Christmas please promise me one thing that….

you will love us even when we least deserve it because that’s when we need your love the most….