Thursday 10 March 2016

The One With the A Word

So here's the thing. I haven't blogged properly for a long time because although there's been loads to talk about I haven't known exactly how to say it.

So I just need to plunge in and say it. 

The boy has been diagnosed with high functioning autism. High functioning means he's the lower end of the autistic spectrum and more able to function in everyday society. It's sometimes called Aspergers - but to be honest when I read about Aspergers I don't recognise a lot of the characteristics in the boy at all - and apparently the modern day thinking is to use the term 'high functioning' anyway as that's more positive. 

So there you go.

Even though we were kind of expecting it after all the appointments, observations, reports and analysis it still came as a bit of a shock to hear someone say it out loud.

It felt a bit final, even though this is an initial diagnosis and there's more tests going on, but to be honest with you I don't expect it to change greatly. 

Part of me was relieved to be getting somewhere at last and part of me was heart broken that it wasn't all a massive mistake and they'd got it wrong. 

Several weeks have now passed since we saw the paediatrician and life has settled into a normal pattern again. The boy is still the boy. He hasn't changed. His world is still as it always was and we're very keen to keep as much stability and normality in his life as possible. The school are being brilliant and so supportive. We have an additional homework schedule in place to assist with his phonics, letters, numbers and handwriting and as a result they are all improving.

Which begs the question is it just that the boy can't be arsed but when he does turn it on it's all there?

I'm not denying he's 'quirky' and doesn't fit the boxes and he does display some autistic traits but there's always this feeling in my heart that sometimes, just sometimes, he's playing us all. 

Time will tell I guess, but after the initial shock, the 'why us?' and upset I've actually cried less and felt more positive since the diagnosis. We're no longer in 'limbo' waiting for something to happen and feeling lost somewhere in the system. 

Don't get me wrong there are days when I look at the big blue box file I keep all the reports and observation notes and appointment details documented in and I want to take the bastard thing outside and burn it. But on the whole things are good.

The boy is as funny as ever. His manners are beautiful. He's caring, getting more sociable each time I see him with school friends, he has the growing maturity to deal with his rages and think about making the 'right choices' as they say at school. I see progression as a person, academically (when he can be bothered) and socially every day. He's my pride and joy, he's my life, my love and we all adore him.

We're very lucky and things are ok.

On several occasions we've been told 'the trouble is he doesn't live in the real world', to which I've replied 'who the hell wants to live in the real world? I'd rather live in his world thanks' - and drawn worried looks from doctors, therapists, SEN co-ordinators and health professionals.

But you know what, the boys world is safe, warm, full of love and support. And I for one am more than happy to live in it with him. 


  1. Good luck on the next stage of your journey with your little man. Living in someone else's world can be quite liberating. But I hear you about the big red box. I hope the system treats you kindly xx

  2. I absolutely love this post!! I have felt exactly the same along our roller coaster of family life with many up's and downs but even if Boy Wonder is making baby steps in progression I am more than happy with this!! It's when other people come out with comments like "He doesn't look Autistic" or "I don't know how you cope" or "Ohhhh like Rain Man/That kid in Mercury Rising ... I've seen that I understand now!" I just roll my eyes and tell them to shut up, they've no idea what it's like to have a child that self harms just because it's raining and the weather man said it wasn't to start until later!

    The whole "he's not part of our world he's just living beside us" way of conversation I'm hastey with a come back about how our world is like an old black and white TV set but his is in full 4k HD which we're getting to see along side him ... If i have always been against living life like a sheep there's no chance he's not going to be part of my pack of Lions that are proud of who they are, know that they're loved, accepted and equal. The sheep are there for Mammy lion to provide food as need be!

    Enjoy the roller coaster of life aiming for the highest of highs and learning from the lowest of lows! Congratulations on your diagnosis embrace it and share your experiences!! Us Mammy Lion's have to stick together and share support, strategies and milestones!!