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. 

Sharing joy

När man har ett barn som har en diagnos av något slag, eller en svårighet – så tar man aldrig något för givet igen.

För minsta lilla framsteg som Oscar gör så är jag så tacksam. Saker som andra föräldrar kanske tar för givet, eller inte ens ligger märke till, känner jag en oerhört glädje över. 

Som att han vinkade och sa “bye, bye” till några goda vänner idag – och tittade på dem medans han vinkade och sa “bye bye”. Detta skulle inte hänt för tre månader sedan. 

Eller som i förmiddags, när han var tvungen att dela gunga med sin lillebror i lekparken. Och gillade det! Lillebror satt bakom Oscar i gungan, och Oscar vände sig om och skrattade tillsammans med lillebror. Ljuvligt, underbart för mig som mamma som fram tills nu känt att Oscar inte har brytt sig ett dugg om sin gulliga brorsa. De har varit så långt ifrån varandra mina små pojkar, så separata från varandra – inte haft någon relation alls. Lillebror har försökt och tur att han hade tålamod, för äntligen låter Oscar honom vara hans kompis. Hjärtat slog några extra slag när jag såg dem skratta tillsammans i gungan idag, och alla andra i lekparken måste tyckt att jag var lite over the top som tog hundra foton på bröderna i gungan.

Och han säger fler och fler ord. Han pratar inte än, och använder sig sällan av ord för att kommunicera med oss vad han vill, men han säger ord som “bada” när han är i badkaret, “katt” när han ser en katt, “bil” när han ser en bil. Ofta både på engelska och svenska faktiskt, vilket är lite kul för oss som är tvåspråkiga . Det är nästan som att han övar på att säga orden. Jag hoppas att 2016 kommer bli vårat år, med tanke på hur mycket Oscar har utvecklats bara den senaste månaden så är jag hoppfull!

Rädslor

Jag har aldrig varit en särskilt nervös mamma. När Oscar var bebis oroade jag mig inte alls speciellt mycket, jag lyckades faktiskt njuta av bebistiden. Något som jag vet att många har svårt för. 

Det var när Oscar blev två år och jag märkte att han förändrades som jag blev orolig. Jag började analysera hans beteende på ett sätt jag aldrig gjort förut. Jag googlade, läste på forum, pratade med andra mammor och hoppades att mina något nervotiska orostankar att något var fel på mitt barn inte skulle stämma. Att det bara var jag som var en orolig mamma. Och det var nog det jag intalade mig, att oroar och överanalysrar gör jag ju alltid, så det är nog det som är det problematiska, inte Oscar.

Så visst kom som en oerhörd chock när läkarna berättade att min son, min perfekta pojke, “uppfyllde kriterierna för en diagnos inom det autistiska spekrumet”. Jag var helt inställd på att de skulle skaka på huvudet, skratta åt mina nervotiska tankar och säga “det är inget fel på din son, du kan gå hem!”.

Jag hade inte oroat mig i onödan. Läkarna analyserade Oscar på precis samma sätt som jag hade gjort i månader, skillnaden var att de kände igen beteendet och kunde sätta ord på det.  

Jag trodde trots allt att det inte skulle hända mig, oss. Det gör man ju inte. Jag hade ju läst långa kurser om autism under mina psykologistudier, och tyckte alltid det var intressant, men hade aldrig haft en tanke att det skulle hända mig? Oss? Det kändes så orättvist – jag tyckte på något vis att jag redan fått ta mig genom tillräckligt många relativt jobbiga saker i mitt liv, skulle jag nu också behöva ta mig genom detta?  Jag orkade inte. Ville inte. Jag ville bara ha det lite lätt ibland. 

Men nu är det så. Oscar har någon form av autism – jag hoppas det är “hög fungerande” eller “Aspergers” men det är svårt att veta när de är så små. Jag har accepterat det nu och jag ska göra allt jag kan för min lilla pojke. Min nya rädsla är att han aldrig kommer lära sig att prata, och åter igen hoppas jag att den rädslan är “nervotisk” och att jag om ett år eller två kan skratta åt den tanken. Vi får se. Just nu tar jag en dag i taget – och idag, för första gången så petade Oscar på mig, såg mig i ögonen och ville berätta något. Vad vet jag inte, men det var klart och tydligt att han hade något på hjärtat som han tyckte jag borde få höra om!