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. 

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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! 

The quirky one 

In so many ways Oscar is such a normal little boy. He is happy and affectionate. He loves cuddles and to make other people laugh, specially his little brother. He loves going to the park and nags me all day long for ice cream. He likes his cars and trains and dinosaurs and is, most of the time a very happy little boy.

But he doesn’t communicate well. He doesn’t use many words to tell us what he wants. He has just learnt to point and has done so a handful of times to tell us what he wants. He can wave “hello” and “bye bye” but he doesn’t look at the person he is waving to, because he doesn’t really understand the meaning of waving. He just knows it’s something you do when you say the words “bye bye”. His younger brother who has just learnt to wave as well, looks at the person he waves at and tries to get their attention. And his brother has learnt this just in passing by the way, picked it up from watching us do it. Oscar never did – we had to teach him.

Oscar is hilarious in so many ways. If we are out in the park and some strangers are having a picnic, Oscar will just go and join in a and sit with them. Even if we don’t know them. In his world, picnic blankets are to be sat on, even if you don’t know the group of people who are having a picnic. I laugh at this because it is kind of sweet and funny, and I’m sure we can teach him the rules of the social world as he gets older.

He actually likes other children now, he used to ignore them but now he is interested and wants to interact. He doesn’t know how to do – and of course, what do you do when you can’t talk, it’s sweet, he just walks up to kids in the playground and stands next to them. I’m glad he is showing interest in people – I think it is very positive.

And he has weird interests. His current ones are doors. He will open and close every door he can find and if someone gets in his way he gets kind of annoyed. He also loves fire extinguishers, we went to a museum to look at a dinosaur exhibition a few weeks ago but Oscar kept running away from me to look at the fire extinguishers. I am considering buying a fake one for him so he might get bored of them.

And today I got a kiss from him. Completely unprompted – he kissed  me and walked off. I know this probably happens a hundred times a day for most mum’s but in this house it’s kind of rare. 

Perfection with a twist 

My first born son came in to this world on the 16th June 2013. It was a slow, and long from straight forward labour. And I remember so clearly, thinking the first time I saw him, that he was perfect. Utter perfection. It surprised me somehow, that I had made this baby. This perfect baby. We named him Oscar and he quickly got the nickname Oscy, or Poscy as we like to call him. 

Oscy was the most gorgeous baby I had ever known. He was smiley, he liked people, he never ever slept and was just so excitable at all times. I loved being a mum – I loved being his mum.

Oscar did everything he was “supposed to”. He learn to sit up, and crawl. He took his first unaided steps at 14 months. He learnt a few words which he would repeat – one of them was shoe. He used to say “die” instead of “bye” and I remember finding it rather funny.

But he never learn anymore words than that. And when his baby brother arrived when Oscar was 19 months, Oscar changed. He became quiet, withdrawn. Completely uninterested in his brother. It would break my heart when I saw pictures of siblings holding hands or hugging and kissing, Oscar completely ignored his baby brother. I used to joke and tell other mums that he probably wouldn’t care if we left his brother in the park. He got terrible jealous and started hitting and scratching as soon as his brother made the slightest noise, my arms were covered in marks from Oscars aggression, and the days were taken over by trying to stop Oscar from attacking his brother. 

His speech didn’t develop and I started noticing that Oscar didn’t play like his peers. I tried not to worry and everyone told me not to, but I could not completely ignore the feeling that my little boy was struggling and I was at loss at how to help him.

The 29th of January 2016 my perfect boy was diagnosed with Autistic Spectrum Disorder. It was, even though I had suspected it for months, an utter shock to my husband and me. The following months were hard. Harder than anything I’ve ever had to go through. There was anger, anger towards the doctors who diagnosed him and anger towards the whole world. It took me months to accept it, and months to change the way I looked at the world “autism”.

The thing with autism is that you can’t see it. Oscar looks completely normal to most people. I used to say that there is nothing wrong with him – and there isn’t. He is still my perfect boy. Perfect with a twist. This blog will be a place for me to write about his progress, and how I as a mum learn to help my boy in the best possible way. There will be no photos of his face here, as I would like to keep him anonymous.