A little Introduction

Hi, so I decided to write all this down, so that other people could see what Autism is like from my point of view. 

Why is my point of view any different? 

Well I have Aspergers. It’s the high functioning version of Autism. I have one son, he’s 8 years old and he’s my world, oh and he has Classic Autism. 

Now im no professional in the field, or a Doctor with letters after my name. But I do have a wealth of learned knowledge. I can speak from experience, from understanding and from going through it myself. 

I really just want to share what my understanding of Autism is, hopefully in a way that you the reader can understand. 

It may give you a glimpse into the world of being Autistic and a little empathy for those who live with it each day. 

I want to try and let you see all aspects of Autism. Yes it’s really difficult, pedantic and a right pain in the bum at times. But there is humour in it too, and laughter and love. 

So many people see Autism as a disorder, something’s wrong, they aren’t right. Their wiring is wrong. 

Actually that isn’t right at all. 

People with Autism aren’t wired up wrong,

People with Autism are wired up differently. 

 

Me.

My little buddy.

A Mummy’s love

I have a close relationship with Finley.

unfortunately some parents are unable to understand how to help their kids with Autism. It’s a process you have to go through. 

When I was pregnant, I would imagine the child I would have.

I would imagine birthday parties, school friends round for tea, going on holidays. I would imagine little arms around my neck with I love you Mummy. 

 

When Finley was diagnosed with Autism, I had already recognised the signs. 

He was the perfect baby, he never cried. He was content wherever I put him, he didn’t grab at toys. He had a caterpillar (Catty) attached to his cot and he would laugh at it for ages. 

Finley was 2 years and 5 months when he was diagnosed with Autism at a multi disciplinary assessment.  I don’t mind telling you I sobbed my heart out for him, partly because I knew what lay ahead for him. 

In a way it is similar to a mourning process. It’s devastating! I mourned the loss of the child I thought I would have. Of course it’s also the unknown. 

Would he ever talk?

Would he ever look into my eyes?

Would he ever say I love you? Or even call me Mummy. 

What you have to do though is begin again, it’s really hard, but for the sake of my son, who I love with all my heart. Whatever I could do to help him, I would. 

Acceptance is the key. 

When you accept that your child has Autism then and only then can you help them. Saying that’s not right and denying it does not help your child, or you in the long run.

So I found out everything I could about his type of Autism, I read books, watched TV shows documentaries, went on online forums, I went on courses. I learnt sign language to communicate with him effectively and I learnt how to do PECS which is picture exchange communication.

Fin didn’t speak till he was 5 years old, but when he did he spoke in full sentences, used words correctly with the proper emphasis. And big words too.

I realised that the way to help my son was to become his advocate in the world. He needed me to step up and be his communicator. To not only be his parent but the one who fights for him on a daily basis.

Finley has never spontaneously said I love you Mummy, I don’t know if he ever will. He does not understand about birthdays or seasonal holidays such as Christmas and Easter.

 

But it I know that when we do the light show. Which are laser lights in a dark room, where I put on his favourite music, we sit on the floor, he sits between my legs and we rock in time to the music and watch the lights throwing shadows everywhere.

i know in this special time, when he’s laughing and it’s when we have a connection that I kiss his little upturned face, look into his eyes and say, I love you boy, do you love Mummy? And he says love Mummy. Well then I know it’s all worthwhile.  

 

 

Autism as a way of life

Autism in our house is a way of life. 

Fin has classic Autism, I have Aspergers which is high functioning Autism. We share the same basic difficulties, but express them in different ways. 

Communication, social and sensory. 

So here’s a little insight for you. 

I’m rubbish in huge amounts of people, I have to psych myself up for special occasions that involve a great deal of noise, flashing lights and people. I can do it but in small doses. 

I will disappear for a bit, to recentre myself. Sounds, faces and visual interactions are all different to me. 

Its like being in a hazy room with lots of people who are all speaking at the same time, and in different languages, that you have no hope of understanding, and they are looming into your face. Add the smell of sourness to the mix then sharp smells that make you want to run away. 

Inside im  Aaaaaaarrrrrrggggghhhhhh. 

But on the outside I’m calmly trying to process this information enough so that I look normal. So small doses is enough. 

I tend to laugh at myself a lot, because it can be really funny.

i can’t maintain eye contact for long my eyes flit around a persons face, or into the middle distance, this can be misinterpreted as disinterest. It’s not that at all, I  can see my own reflection in your eyes and who wants to see that when talking. Too you I look pretty normal, because I’ve learnt what is acceptable in social situations. 

It doesn’t come naturally. I have a heightened sense of smell, I generally know a person by their scent.  Aftershave and perfumes are a nuisance, because they are confusing. But get this! I know a person by the fabric conditioner they use. Skills eh! 

It can be a nuisance. Cooking smells are repulsive. And I recognise the smell of fear and danger, they are metallic and sharp, and acidic. 

So I also live by routine and structure. I’m organised and need this to centre the rhythm of my life.  I have a set way of doing things, and if it’s messed with, it can mess up my day. This isn’t funny at all if you have to live with it. 

The cushion thing! 

When I leave the house I have to make sure that the cushions are all puffed to perfection and aligned neatly on the sofas. If I forget to do this I have to return to the house and do it. It is not possible to mess with the system. I know you’re thinking what a LooLah. But to me it’s very important. You see Tidy Home in control. 

I cant control a lot of what happens in my environment, but I can control what happens in my home. As you can imagine I am a bit of a nightmare to live with. But I am also funny, and can properly laugh at my idiosyncratic nature. My Aspieness can be amusing. 

So a small insight, this is why I understand my son, he is a small child and his reactions are a lot different to mine. It is a confusing world for a child with Autism. 

Our brains aren’t the same as yours. It’s not that we are wired up incorrectly. It’s that we are wired up differently.

because of this normal everyday stuff becomes that little more difficult. We have to adapt and learn our own way. Finley reacts as a child would. He will have a Meltdown. This is not to be confused with a tantrum. He simply can not take anymore information into his mind, so he lashes out. As an adult I react by spending time doing something that calms me, where I can recentre myself and gain perspective. Finley is a child and has not learnt that he can do this, so it’s a sensory overload. Afterwards he is okay. But as he is growing up he is learning that there are other ways to adjust to life. 

The good thing about having Autism is that I understand this process, and I can help him through it. 

So there! A small insight into our world of Autism. I hope it helps you see in some small way. It’s about awareness, and understanding. 

Thank you for reading ❤️

 

All Gates should be shut. 😂

Gates and Doors are the best in our house.

We love Stimming

So stimming. It’s great to have a Stim. 

But what is it?

Stimming is a thing of happiness. It’s a place of pure joy. That one thing that brings you comfort from the confusing world around you. 

Finley has a great stim.  He has a flappy. He holds his flappy against his teeth, and flaps it with his fingers, the sensory input is outstanding and it makes a great sound. He has a set of drawers in his room with different types of flappys. All are important for different occasions when a specific flappy is needed. But one drawer holds the holy grail of flappys. These have been rescued from roofs, dug out of sand pits, even in water. They are tatty, old and crusty. But they are a firm favourite. 

When Finley has been at school all day, he loves nothing better than laying on his bed with his quilty and his flappys. In the same way as watching a bit of TV would relax you, this relaxes him. The familiar order, the sound and feel of the flappy, the repetitive motion against his teeth, he is in control and this control and rhythm helps him to relax. 

It is never good to take away a stim as a punishment,because it looks weird, or because I’d unwanted behaviour. This is the one outlet a child with Autism has to release pent up emotions. 

The whole point being children with Autism can’t just say I feel sad, because.... or today I feel angry because.... 

life would be so much easier if Autistic children could just say how they feel. But they can’t.  It’s part of Autism. 

A regular child can express their emotions effectively. But this isn’t the same for a child with Autism. Therefore a stim is an excellent way to release emotion. That’s why some Autistic children like to spin, it feels good. And some like to hum, or make strange sounds. 

They are expressing themselves, yes sometimes it may seem inappropriate, but it’s an expression of what they are feeling. Don’t stop it encourage it. 

I have discovered that the way to enter into a child’s world is to engage with them. Autistic children are the same, in this respect. To understand them, to connect with them we must enter their world. Convention can do one! 

My son loves the feel and smell of wooden fences. If we are out and he sees a particularly interesting one, he will think nothing of going straight over to it, and giving it a good sniff. 

Join in! Have a sniff, run your fingers over the wood, sniff a few house bricks. Play with leaves. 

I like to spend time connecting with Fin, and to do this, I sit on the floor in his bedroom, then we look through all his flappys. Picking out the best ones and trying them out. 

Yes we aren’t doing jigsaws or playing with toys, but this is what my son enjoys the most. Therefore we have a connection. 

Autism changes the way you think as a parent. 

You need to take that parenting book and throw it out the window. 

Every child with Autism is a different child with Autism.  But what we need to learn as parents is that our children require as much love and attention as regular kids. Yes Autistic children may not show their appreciation or respond to you in a conventional way. 

But my son is still a child. You see Finley has Autism, but Autism doesn’t have him. 

It’s Black or White, there are no Grey areas.

As you now know, people with Autism think differently. 

I want to try and explain to you how different, but also how brilliant my mind can be. Many Autistic people are described by typical people as emotionless. 

That is wrong! 

I am creative, funny, caring, trustworthy.....I smile when I’m happy, and I laugh at funny things. When  I’m down, I cry or just want to be alone. 

But I have a special gift. I don’t use it very often though, it only comes out when it is really needed. Some might say that it is a type of self preservation.

I will explain. 

On the 5th August 2017, I recieved some news that tore my world apart. 

My Mum had complained to my Dad that she had an awful headache. It wouldn’t go, so my Dad took her to the Doctors. When they were inside the room with the GP, my Mum fainted. 

They couldnt bring her round, so called for an ambulance. On the way to the hospital, they lost all her vital signs and she died in the ambulance. Mum had a major brain hemorrhage. 

My Mum, was the most positive, forthright, beautiful woman, and everyone who met her loved her.  She was also very wise, and we were and are all very close. 

That evening I went to see her, wired up to machines in the intensive care unit. I went straight in and laid down beside her on the her bed. I stroked her lovely hair and told her that I would bring up my son to be just like her. Through my tears, I thanked her for her love, and then i sang to her. I sang her a song that she used to sing to me as a child, and that I now sing to my son each night.  Then i kissed her goodbye and i left. 

On the way home, i formed a plan in my mind. This plan would get me through. I knew that Finley who has classic Autism would not understand death. So explaining that he would never see her again...........

And so i turned to my Aspie side for help. 

Now I know how this is all going to sound to you, but this was my way, and our way. I decided even before i got home, how I would be. My Aspergers was my hope, my help, it was also my strength. 

That night, i cried for my Mum, but when i put my key in the front door, i knew that for the rest of the school holidays, Finley was with me. His carer was on holiday so my focus was my son. 

And so i put my grief, in a box, closed the lid down and i continued looking after Finley one day at a time. When he was in bed at night, i still wouldn’t open the box. My emotions and feelings needed to stay locked away. 

So i continued whilst the world around me was closing down. Some will say that this wasn’t a healthy way to deal with my grief, but for me, it was the only way. I had to put it aside. Until i was able to open the box. My son was my priority. 

When he went back to school little by little i was able to open the box, and take a peek inside. While everyone was falling apart, I was able to continue with my life, literally living in a bubble. Protecting myself and my son. 

I turned off my emotions and feelings. I organised my mind, so that i could deal with the pain at a later time. It wasn’t difficult. I could do it. Watching as my family were crying and grieving, but this wasn’t a choice. I had to do it. 

Needless to say, that when Finley went back to school, I was able to begin to grieve. Im not heartless. It was my way. 

Finley does not understand death. So I explained the facts, that he wouldn’t be seeing Mama anymore. I explained that she lives in his dreams and in his mind. I explained that Mama lives in the sky, and that she is in charge of a special force that makes it go dark at night, and light in the morning. 

Fin has accepted this explaination. And at night he stands at his bedroom window and says Mama is turning down the dimmer switch in the sky. Hurry up Mama. 

I love my boy. To him it is black or white, there are no grey areas. 

My Mum and Dad.

School shoes and Haircuts.

Today I’m going to write a little about Sensory Processing Disorder. 

It means how we feel, touch, taste differently. 

In Finleys case, when he was small if he fell over and hurt himself, he would stand up, knees bruised and bleeding and laugh. He wouldn’t cry. Crying is the normal response when we hurt ourselves, because it hurts. 

Fin would not accept cuddles and most certainly not a sticky plaster. If he was watching the TV and he saw something that he found funny, he would bury his head into the cushion or me and would cry.

It has been said to me before that sometimes I seem aloof. Or worse still Autistic people can be described as emotionally detatched. Nothing could be further than the truth. An Auty (thats Autistic, shortened, and it sounds nice) has to learn, how to process the senses. Its a bit like a game of mix and match. What goes with what? What is acceptable? How should I be feeling? 

Social interactions can be a nightmare, even now I find them difficult, and wonder if I came over as an utter clux. 

This is why I think neurotypical types, that is the non Autys come to the conclusion that Autistic people are detatched, have no feelings and are emotionless. 

Finley didn’t know that if he hurt himself that he could cry. He didn’t know that if he was happy then he could laugh. He has had to learn that. 

This applies to other senses as well, such as taste and texture. Fin was very limited as to what he would eat. He hated jelly, not because of the taste, but because of the weird texture in his mouth. He would just let it fall out in one big lump. And look at me, like what the heck was that? 

As he is growing up, he is learning how to react and respond to the world around him. A child with Autism is always learning. They have to learn things that come naturally to a typical child. Therefore I think that is pretty amazing in itself.  As he gets older, he is learning what is acceptable and what isn’t. 

Finley does not like having his feet measured for new shoes. The whole experience is unbearable to him. The smells, the lights, the noises, the people, its all too much. 

Fin has super sensitive hearing. At night the fire engines blast their sirens past his bedroom window, honking their horns to get the cars to move out of the way. He doesnt bat an eyelid, sleeps through it all. But when the neighbour 4 doors down, switches his extractor fan on and off, Fin can hear it and it disturbs him. 

I have learnt that at the moment Finley can not deal with busy shopping centres. So i bought a foot gauge, so I can measure his feet at home. Still getting the job done, but not with the added meltdown.

I am going to finish with a scenario for you, that describes what it is like for my son to go and have a haircut at a hairdressers. 

Ah the relaxing haircut, just sitting in a cosy chair, with a cup of coffee, drifting in and out of conversation.....wonderful. 

Fin finds it difficult to sit in a chair longer than 5 minutes.

The snip of the scissors, very cold against the skin, and loud be careful of my ears. The feel of the metal, tense up. Nervous now that awful snipping too close. Wincing as the comb drags over my head it hurts too much. The rustle of the plastic cloak uncomfortable, itchy, choking my neck. I cant breathe, starting to panic. 

The smells, ammonia, shampoo, perfume, hairspray, ooh someone spraying, too loud,then dont open my eyes, the people, rows of people with rows of people behind them and mirrors that make more people, too many people, laughing and talking and shrieking and shouting and eating. Cups chinking in a bowl, hair all around on the floor loads of hair, then sweeping and a hoover, and laughing and talking its too loud. The snipping, the lights, the sensations. Whats that? A fan whirring over my head. Then the pages of a magazine turning, like a whisper amongst madness. Talking, snipping cups chinking, falling falling falling. A magazine drops, sounds like a pop. He jumps. He cries. He pulls away. He runs. 

And then the sensory overload, and meltdown. 

Early years. The signs.

As previously written Fin was a happy content baby. He didn’t really cry. He knew who his Mum was though, and would get fretful if he couldn’t see me. 

I had started to wonder about Autism as at 6 months, I noticed some differences. Not enough to be unduly alarmed as he is a boy. And well the truth is boys are born lazy. 

When it was time for tummy time, at the mums and tots group. I would lay him on his tummy and as the other babies kicked and cooed, Finley would lay completely still. No reaction. Oh apart from one. He would trump like mad. He really was quite content, wherever he was. As long as i was there too. 

He wasn’t reaching his milestones. 

Physically yes! He sat up, crawled and walked quite early. But as a baby, he wasn’t interested in toys, gripping them, chewing them. This didn’t happen. 

I would put him in his bouncy baby chair whilst i did the housework. When I checked on him he would be laughing at the rays of sunlight, shining in the window. And his eyes would follow the shadows on the walls. He loved laying on the floor looking at his hands, but later i was to discover he was looking at how the sun moved between his fingers, and how warm the sun was on his face, and this was what he loved so he was happy. 

At 12 months when Finley started to walk, his interests were the washing machine and the hoover, he loved watching the repetitive motion of the cycle going round and round, his face pressed against the glass, and taking the front off the hoover. That was fun, searching for missing parts of hoover front. He had no interest in toys, or how they worked. If they did nothing, then what was the point of them? 

At 2, Well they say the terrible twos. 

Finley didn’t have tantrums, or throw his toys, or shout and scream, or have the I wants. Now you may think wow, you had it easy then, No. 

For me to see his obvious difference,  the fact that as other children ran about the park trying out the swings and slide, playing together, learning turn taking. Laughing and crying being kids. 

Then over in the corner away from the others, playing in his own world. Standing out like a beacon, the odd one out. My boy, running his hands along the metal bars of the outer barrier, stopping to laugh at the wind rushing through the trees, making the leaves rustle. Watching the spiders weave their webs in tiny crevices. He was completely happy in his own world. A non speaking silent world. 

He would watch the other children play and smile. But Finley has only ever played alongside other children. He doesn't join in, because he doesn't know how too. Finley has to be taught how to interact with other children. 

Finley first spoke when he was 5 years old. He wasnt mute though. He had his own words to express his joy. He was so lovely. He would sit on my lap speaking in his own language expressing his happiness, I miss those words, 

Gibby Gibby, Goodygare, Gula, gabbagare. He liked a G. 

When Fin was officially diagnosed with Autism at the age of 2 years and 5 months, i was devestated, I didn’t want him to have to go through the pain of knowing he was different. But you see, to him he doesn't see that. He knows he’s different, but it’s the only way he knows. And he loves it. 

I on the other hand.... for a long time I felt guilty. I felt as though I was responsible, like I had given him Autism. It takes a while for those feelings to go. 

Now if someone told me today, what if we could go back in time, what if we could give you your son without Autism, what then? 

I know my answer! 

I know straight away.   If you are going to give me back my child without Autism, then he wont be my son. Yes Autism is a part of him, but Autism is part of his personality. You will take away Finley if you remove Autism. 

It is a difficult journey, and I believe that these children are called special because that is what they are. They are different. And they are beautiful. And they are expressive. And they are fighters. And they are unique. My son is always learning, always processing new information. 

Fin sees the world from a different angle, and I love that I can share in his world. 

Yes, there are so many things about Autism that are difficult, so much learning and patience needed. Schools, Appointments, Therapies, Medications, Associated conditions, Endless paperwork, Meetings, Time. Etc. 

But he is my child. And I will continue to help him in anyway I can. So in answer to the question. Would I take away the Autism. 

No I would not. 

He isn’t malfunctioning, he is working perfectly. 

 

 

 

Cuddles and Biting.

I haven’t written for a while. But I wrote this at the weekend. 

Autism is strange in the respect that when Finley responds with unwanted behaviour, he gauges my reaction. He knows my typical response and hopes for the best outcome. 

All children play on emotions, they wind us up like a tightly coiled spring! Just to see how far they can go. 

Most children know when to stop. They sense the danger zone. 

This is a difficulty for those with Autism as, children with Autism don’t understand or initially accept boundaries. They like everything their own way, because in their minds it’s the best way. Therefore your opinion does not come into it. Another learning curve! 

So Finley thinking as a child does, when he comes up against a new rule, that doesn’t fit in with his way of thinking, well he kicks up a storm. 

His reactions and behaviour become a thing of pure frustration. It isn’t because he wants his own way and is having a strop. It’s because he firmly believes he is correct. Therefore I am messing with a perfectly good working system. 

Do this and he is out of synch. His pattern of behaviour is disrupted and a change that he doesn’t want or understand is about to happen. Therefore the reaction. 

Sometimes this doesn’t manifest itself right away. It gets stored in his mind for later recollection. Because he has to deal with the thing that has changed, and Autistic minds, like to do one thing properly to completion before starting something else. 

 

Also because in an Autistic persons mind, you react to a thought in your mind. Instantly! I’m like this. But I’m an adult. So when I think, I react, it’s a shame my face is the first to react. So people always know what I’m thinking as it’s written all over my face. 

Finley as a child has stored his reaction already in his mind for later use. Deal with the change then when he is comfortable with it! Then react. It is a delayed reaction! 

 

So Finley will be giving me a little cuddle, being affectionate and sweet. Suddenly he will turn and either bite me or grab and pinch. He has bitten me really hard before so much so that it has bled. To have been hugged one minute then the very next hurt, is a shock! And being a Mum and human I want to react badly. Of course he doesn’t get away with this behaviour. But I have had to go into the bathroom, lock the door for two minutes alone. Because yes it hurts but it also hurts emotionally as well. 

I know he doesn’t mean it, he is reacting from the earlier change. 

Finley usually then will become upset because he reacts to me. He wants to say sorry and tries to make up for this behaviour. You see Finley doesn’t realise that he doesn’t have to hit or hurt me. He just sees it as, he feels it. 

He will remember I’m supposed to be frustrated about something that happened earlier, I can react now. 

 

All this unwanted behaviour is called challenging behaviour. You can see why!! 

Children with Autism can’t be allowed to get away with naughty stuff, that’s not what I’m saying at all. But everything you take for granted has to be learned by an Autistic child. How to react! To something new! But also when to react. 

 

Finley has medication to help him, he has an anxiety disorder as well as ADHD  alongside sensory processing disorder and of course Autism. 

It helps you to understand. I have to be quite strict with Finley when it comes to the rules. He understands that I’m in charge. But I always explain my reasons to him, so that he can see the change is necessary. You don’t have to really do this with typical children. 

But with Autism it helps to know the reasons behind a change. So that it can be accepted. And not cause an unwanted meltdown at a later stage. It’s all a learning curve, be it a painful one!