What it’s like to be his mum

When we first were told that Oscar had autism, I wanted to know what it meant. I had heard of autism, and read about it. In fact, I even studied a module at University about autism, as I found the subject intriguing. I never thought it would ever be relevant to me on a personal level though. You know, these things happens to other people. Not me. Not my child.

So here we are. Nearly two years ago since we were told that our little 2 year old boy wasn’t just speech delayed, that his lack of language had nothing to do with being bilingual or any other reason you rather think of. He was in fact autistic. 

And two years on, I still don’t really know what it means. Being on the autistic spectrum is such a vague thing, it could mean that you will be a super intelligent scientist but it could also mean that you never learn to talk, look after yourself, or live independently.  We don’t know how Oscar’s life will be in 2, 5 or 10 years time. I hope he will be happy. And content. And supported, if he needs support. I hope he will be able to talk to me. I am not so worried about all the things I used to worry about, the grief I used to feel on a daily basis is becoming less and less, I have reached some sort of acceptance that this is my life now. It’s not what I thought it would be, but it’s ok. Things could be a lot worse.

So what does Oscar’s autism means, to us, to him, to the people around him?

To us it means that we can’t expect him to answer any questions,, if we ask him what he wants for breakfast we need to be in the kitchen, and he needs to see the options available. He can choose between toast and cereals for example. If he doesn’t want any of those options he says nothing at all.

We can’t expect him to get excited about things like birthdays, Christmas or Halloween. Either he doesn’t understand the abstract concept of them, or he just doesn’t care. Tricky to know what is what, when he can’t tell us.

If we take him somewhere new we know that he will be stressed and cope with it by running away to look at locks. And it’s very hard to stop him, because when he gets stressed he doesn’t listen.

Playdates, socialising, interacting is very hard. Oscar can tolerate other kids as long as they aren’t too loud (screaming or crying is the worst!) but he very rarely plays with other kids. He can enjoy things like ‘chase’ but he doesn’t do pretend play at all. It breaks my heart a little bit every time another child tries to talk to Oscar and he just ignores them. Or like if we are invited to a playdate and the other child says “Oscar isn’t playing’.

It means that if Oscar has a really bad meltdown he can physically attack me by scratching my arms, face and neck. It means that there has been times when I can’t keep the boys together in our double buggy as Oscar can, if he gets very angry, attack his brother.

It means endless amount of paperwork, conversations with nursery staff, school meetings…

It also means that all the tiny little things that other parents takes for granted are massive. Yesterday Oscar tried to make me give him another biscuit by saying ‘Please, please, PLEASE’. He nagged me so much, and it didn’t annoy me one bit. I was just so thankful that he was communicating with me.

It also means that he is cuddly, loving and extremely affectionate. Oscar feels everything, a lot. And he shows it. He looks at me, closely, ans says ‘mummy’ and almost shakes with excitement and love.

Being Oscar’s mum makes me humble to life, to other people’s struggles, to how incredibly hard it all can be. But also how beautiful the precious moments are.

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Door handles and thoughts…

It’s been a while since I last wrote. So many things has happened since November, and I want to share it with you all.

At christmas, Oscar went through this amazing developmental leap where he started to communicate with us. He started showing us his toys, requesting simple things like food, and comment on the world around him.

He also went from being in a nappy to being completely toilet trained, day and night in a matter of three days. I had worried about getting him out of nappies as he had not shown much interest in potties and pants earlier, but by christmas he was ready. And when Oscar gets something, he gets it. It is almost like there is no middle grounds with him, he learns something new and it’s like he has forgotten that he ever used to do it in a different way. I think it might be his way of dealing with life, life is lived by certain rules and those rules are not to be changed or broken once in place.

It was so lovely that he started sharing his little world with us. He went through a time of being obsessed with keyboards, and he learnt what every little sign on the keyboard is called. It took him no time, I told him once where the exclamation mark was and he remembered it. So I have no doubt that his memory is good, and that he is able to learn things he is interested in.

He is turning 4 next month. He is starting school in September. I worry how he will cope, and hope that he will get the support that he needs. Because despite being able to communicate a bit more, he still struggles a lot more than his peers with language. He still can’t answer questions. He struggles to make choices. He struggles to follow directions unless he is very motivated to do so. He becomes hyper focused on things, right now it’s door handles and locks.  I think he does it when he is stressed or anxious, when he is in a new place.  Wherever we go he will try to find a lock to study. I worry that he will find school too much, too hectic and be too distracted by whatever he is interested in at the times to take part. I worry that he will feel different and less than his peers.

My darling boy. The happiest little soul I have ever met. I used to say that he was the most excited baby. Now he is such an excited 4-year old. He jumps, he squeezes, he flaps. It’s like he feels every feeling in every bit of his body.

 

Brothers.

Oscar’s little brother Ollie is chatting. Asking for ‘more’ and ‘again’ and says ‘woof woof’ for dog. ‘Miaow’ for cat and hugs his best friend when he sees him.

He learns language effortlessly. It is so easy for him, he listens, he copies, he learns and he remembers. A natural.

He waves and he blows kisses and he smiles at people when we are out and about.

The difference between Oscar and Ollie is huge – the way that Ollie learns things, specially language – is I guess how most kids learn to talk, and it is just so easy for them. Oscar struggles so much more, to remember what words mean, to remember how to ask for things. He seems to learn new words and then forget them. It is like he is learning a completely different language that is about a million times harder to learn than what Ollie is learning.

But yet there is progress, this week Oscar has learnt the word ‘dirty’ and demands me to clean his dollies as soon as they have been on the ground because they are ‘dirty’. But you know what, it does not matter if he asks me a 100 times a day to clean his dollies because they are ‘dirty’ because he is talking. TALKING. Sort of. And we are slowly getting there. Something I will never take for granted. Because not all children learn to talk. Imagine what it feels like to have never heard the word ‘mummy’. Just imagine it. Just imagine the heart ache of seeing your little boy struggle to ask for a drink when other children his age is having little conversations and can tell you what they did last weekend.

So every time I hear the word ‘dirty’ I smile. Because it’s coming. Give me ‘dirty’ a 100 times a day instead of silence.

 

‘Hug’

And just like that, Oscar asked for a hug for the first time ever. He had fallen over and was quite upset, he cried and wanted to be carried. I carried him for a bit, and when he got too heavy I put him back in the double buggy with his brother. He did not like it though, he continued to cry and looked at my husband.

My husband asked ‘Oscar, what do you want?’ not expecting Oscar to answer in any kind of way, because he never does.

But this time  it was different.

‘HUG’ Oscar said. My husband picked him up immediately and gave him a big hug – of course, and we smiled and all of a sudden the future seemed bright. Things will be ok. Oscar managed to acknowledge and ask for something he wanted.

Later that afternoon he did it again. He ran up to me and said ‘hat’, and I put his hat on his little head and I thought wow, it might actually be happening.

Words. So few, so short. But so very magical.

Life before

Oh how I dream of life before autism.

Life before worries about my boy’s future.

When every day was enjoyed, carefree and full of dreams. When the future seemed bright and hopeful. When we just assumed, that our boy would be like anyone else. That his life would be full of joys such as birthday parties, friendships and play.

I never wanted to be part of the autistic mum-club. I never wanted to have to look up and do the research what schools best can support my disabled boy. I never wanted to learn sign language or makaton. And still, every morning, I wake up and remember. Remember that Oscar has autism, and that I have no clue in how to best help him. Help us. It hits me, every morning like a punch in the stomach. People say you get used to it, but I am not used to it, yet.

Life before autism was carefree and naive. I complained about lack of sleep and how tired I was, and now I think that I would swap any amount of sleepless nights just to not have to worry about my boy’s future.

I spend hours of my time worrying, debating, thinking ‘Will he be ok?’. We are just at the very beginning of our autism-journey. We have no idea if he ever will talk, make conversation, have friends, go to mainstream or special school.

I long for conversation, for him to talk to me, to tell me about what he likes, to hear the word ‘mummy’.

I long for understanding. I want to scream to the rest of the world that I AM IN PAIN because my child has just been diagnosed with autism, and yet no one gets it and no one will ever get it if they have not been in my shoes. I want people to understand that I am not all that strong and that everything changed that day when we found out. At the same time I feel that I should cope better, that I should not be this sad, angry and hurt because people go through a lot worse.

I try my best to stay strong. To stay positive. To listen to everyone who tells me that Oscar’s progress is very good. And that I should not worry. But still, isn’t it our job, as parents, to worry?

I just never anticipated that I would worry about the things I worry about.

 

 

 

 

 

 

 

 

 

 

My struggles

We have Oscar’s diagnosis now. On paper. And it feels ok. Autistic Spectrum Disorder feels ok.

What does not feel ok is to call him ‘autistic’. Because he is so much more. Yes, he has difficulties. Yes,  he struggles with communication. Yes, he is quite happy to be left to his own devices and does not interact much. But he is so much more than his diagnosis. He is Oscar.

And I can tell you that Oscar is really good at climbing trees and loves the slides. He is calm and very rarely gets angry. He loves numbers and letters and will, if you let him, gets lost in his little books for hours. He thinks that everyone is chasing him but chasing other people isn’t really his thing.

He is gentle and sweet and kind and cuddly.

He is beautiful and gorgeous and autism is just part of him.

And you know what –  he does not care. He is such a happy little boy. Content in this crazy world. There is absolutely nothing wrong with him, but this world is not really built for boys like him. Or girls. Because we are expected to socialise. Expected to talk and to crave company. Expected to understand the strange language which we use that isn’t always logical.

I am the one that struggles. I am the one that is so full of sorrow that everyone except Oscar has friends. That the babies that was born the same summer as him are all talking and chatting and riding their scooters and just gets it. That they don’t struggle. I feel sad that he isn’t enjoying the simple things that I can relate to. And I feel lonely because so few people get’s it. They have no idea what it feels like to go through this. The grief, the worry and the loneliness. And the absolute heart break when you realise that some children really struggle, so much more than your little boy.

But Oscar is ok . This morning he stole a piece of my toast and said ‘There you go!’ to himself. My heart melted a bit. He is coming along, in his own little way. Our perfect boy.

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It’s the little things

Today I took my boy swimming. A year ago this wouldn’t have been possible without a meltdown. He used to hate changing rooms. I never knew why a changing room could be so terrifying to my boy, but he used to scream and shake with anxiety. I think it was the noise, the echo, the wet floors. 

But today we went. And I told him, Oscar – we are going swimming. And it was like he knew, because he wasn’t anxious. He knew the deal – we got changed and he happily went in to the pool. He didn’t cling on to me, compared to when we went a few weeks ago when he screamed and cried in the changing room and then cried a bit more in the pool and anxiously held on to me whilst nervously singing “the wheels on the bus” over and over again. 

He actually had fun. I mean, proper fun. He didn’t want me to hold him. He splashed and laughed and squealed “baaaaada” (Swedish for swimming) and jumped of the edge of a pool. My heart was full of joy.

It’s the little things, like taking my boy swimming and seeing him being unafraid, happy and adventurous that makes me so grateful. Grateful for how far we have come in just a few months. His reduced level of anxiety is, in my opinion, directly related to his improved understanding of language. I feel he understands us now. I can tell him things like “we are going to the swimming pool” and he gets it. Yesterday I asked him if he wanted to go to the cafe for juice and he say “yes!”. I mean – we are communicating, he is starting to tell us that he understands us – this is a huge improvement. 

And today, after swimming – he picked up a Christmas decoration that he found in a drawer , looked at me and said “star”, because it was indeed a star.

Oh my dear boy. You are our star. Because  we know that you struggle a little bit more than other kids. And it’s not easy, but you keep on trying. And I am so, so proud of you.