A Light in the Darkness

A.k.a. The Message That Offered Hope

The past couple of days have been a low. SP is largely over his cold – he has a sparkle back to his eyes and is permanently glued to his iPad again – but he’s still not eating properly (or that should be ‘properly’ ie properly for him) and his behaviour’s regressed. He’s been more whingy and miserable than normal, more prone to meltdowns and wants nothing to do with his dad. He won’t venture beyond the front door and asks to be carried everywhere around the house.

Yesterday I lost my temper during a poo-related meltdown. I know I should remain calm, but it’s hard when there’s shit everywhere and I’m being hit in the face. And then I felt like the world’s worst mother for shouting at a child who couldn’t cope himself.

And then a reprieve – a night away and a spa day with my sister – was cancelled at the last minute. Whilst the rest of the family celebrated not having to cope with SP in my absence and SP reattached himself to my lap, I sat on the sofa and cried. 

And then I felt guilty, because at least I get the chance to escape every now and then. How will SP get to escape when he’s had his fill of autism for a bit?

In terms of lows I suspect it will be a minor one along our autism journey. Still, having day of crappy jobs at the hands of a sullen taskmaster and then not being able to go out was enough to have Cinderella weeping in despair. It might still be pathetic, but at least I’m not alone.

  
I might not have a fairy godmother to grant me a night out and a new pair of shoes, but when I felt at my very lowest, when autism was first being implied and I was beginning to realise the actual implications of that,  a friend – a mum of four sons with one diagnosed with autism (O) and a second (W) who has subsequently been diagnosed – sent me this message:

Hi sorry to hear you are having…problems with SP. O was diagnosed at age 3 and I found it very hard. I was devastated. Now if only I had known what I know now! He has surpassed his peers in all his GCSEs, he makes the most of every minute of every day. He is amazing at piano. He has more good friends than J who is fine. 

After his diagnosis the doctor told me she thought main stream education would only work for infant school. I was also told he would possibly never be fluent in speech.

O speaks far better than anyone I know. Like a very posh person, which of course coming from me is a wee bit unusual. If there is a bigger more important word he will use it, for example he told me the other day that he doesn’t find his father’s house aesthetically pleasing because of the level of accumulated dust. Well immediately J calls out ‘you mean his house is dirty you posh prick’ and a usual teenage argument begins. 

What I am trying to say is O is amazing and autism has not held him back at all but given him incredible determination and focus. He is setting up a computer club at school to help other children like W make friends as part of his 6th form community project. He thought of this himself after seeing W’s problems to try and help him. 

There have been some difficult times on the way, and I’m sure more difficult ahead with his moving on to uni and the worry that will bring, but if they had presented me with the amazing young man I have today instead of a diagnosis of a life long disability I would have gone out to celebrate. 

No two kids are alike, especially those on the spectrum, but I know many many kids who do very well in life with autism. My house is full of them most nights as O’s friends are all like it. Oh… And O is a ladies man. They are fighting over him. I think it’s the posh words!

I read it after dropping SP off at nursery, on my way to work. I crossed the park with tears streaming down my cheeks. It offered me hope when everything seemed bleak. I still didn’t know what autism fully meant, but in my heart I knew things weren’t right. I was grieving the loss of a life I’d anticipated for SP and was fearful for the life he’d be able to lead. She’s right – no two children on the spectrum are the same – but the message was exactly what I needed to hear. I will never not be grateful to her, my own fairy godmother.

On days filled with tempers, tears and fallout from a crappy nappy, the comfort from words of wisdom serve again. We’re allowed bad days – both SP and me and all of those around us – but that doesn’t mean that the long term picture needs to be bleak. 

Things have been better today. Despite a dearth of jacuzzi wallowing and spa treatments, things just feel brighter. SP is who he is both despite his autism and because of it and I love him just as he is.

  
I doubt it’ll be the last time I look to my friend’s words for the bigger picture on the bad days though.

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