Friday, 17 July 2015

When you know something is wrong...

Have you ever had a hunch? A gut feeling or just some sort of sudden light bulb moment when you suddenly start to suspect all is not right with your child? Maybe it was as soon as they were born - you didn't connect, they didn't reach their milestones when you expected? Or maybe it was more gradual - as they got older they started to stand out from their peers. Your child is different, but maybe they are just a bit eccentric and don't like to follow the herd. Or maybe, just maybe. It's more serious than that?

For us we had a light bulb moment following many months, maybe years of kidding ourselves. It all started the day we moved house about three months ago. Our two sons had been staying with relatives whilst we did all the shifting and carrying and we thought it best if they were out of the way to minimise disruption. My husband went to collect them and proudly brought them to our new beautiful home. And that's when I saw it. Just a flick of the neck. Nothing major, blink and you'll miss it. But there it was again. And again. As the day wore on it got worse and worse, my oldest son was violently flicking his head backwards and forwards seemingly constantly. I had never seen anything like it. We examined his neck and asked if there was any pain or if he had hurt himself in some way. Apparently not. 

A trip to the doctors confirmed there was no damage, it was behavioural and I was assured it would most likely go away and was probably due to the stress of the house move. Over the next few weeks I tried ignoring it and when that didn't work I tried reminding him not to do it - until I realised he was running to his room to do it in secret many many times before  coming downstairs again. It became clear that flicking his neck was a way of relieving stress. But what did this mean?

The more I googled this, the more worried I became. I started to realise that this might be an indication of something more serious underlying. Other behaviours came to mind as I read through the list of symptoms. His reluctance for change, his need for order, his dislike of anything messy, his detailed knowledge of several things including Thomas the Tank Engine, World War II, Star Wars, the hobbit, and much much more. The more I thought about it the more I realise the signs have been there all along. I remember when he was 14 months old when all the other children were pointing at things saying dog, cat etc my son was talking in much more adult language. "That's a splendid notion", I remember him saying at one toddler group to the amazement of the other parents. 

Worst though are the meltdowns. It seems for our son the terrible twos have lasted much much longer than we expected. I now know that it is not usual for a seven-year-old to have a complete meltdown about wearing suncream. It is not usual for a seven-year-old to have a meltdown because some Weetabix is on the table. It is not usual for a seven-year-old to have a meltdown about something that is totally out of our control like the toy he wants being sold out. But we didn't realise. We didn't realise that parenting is not meant to be this hard. We just carried on as normal coping as best we could.

But then the neck flicking started and we couldn't ignore it any longer. It is possible that our son is on the autistic spectrum. And facing up to that is the hardest thing we have ever had to do.  We started the assessment process and hope...well I don't know what we hope.  For understanding, for compassion, for people not to judge us as parents and think we've done a terrible job. For people not to pick on our son because he zones out, or he doesn't say please and thank you, or he doesn't behave exactly as they want him to. For people not to stare when he is having a meltdown in public and he's creating a scene.  Most of all I want him to be happy, to find his place in a world that creates so much anxiety for him. And for us to realise that even with the diagnosis, he is still our son, he is still the same person. He still makes us laugh with his unique way of seeing the world, his turn of phrase, his sweetness, and his kindness. Yes he is different, but that's part of who he is, and I wouldn't change that for the world.

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