Wednesday, 30 March 2016

The A Word Part 2: True to Life?

Stephs Two Girls March 30, 2016 #autism, ASD, autism, BBC One, diagnosis, education, home educating, MLD, Pathological Demand Avoidance, PDA, schooling, Special School, The A Word

So I couldn't just go to bed without 'jotting down' my thoughts on part two of The A Word, the new drama being shown on BBC One following the experiences of a family after their 5 year old son is diagnosed with autism.

picture of a beach with text 'The A Word' and A=Autism

In my previous post Autism is the A-Word, I wrote about how the first episode brought back memories of that time six years ago when our girl was first diagnosed. I was intrigued to see how the storyline would develop this week and what issues would be covered next.

The main thrust of this episode was decisions over schooling for Joe. The mum made a seemingly rash decision that home educating would be best, whilst the dad was not at all sure that was the answer. So much so, that he went off to research a 'Special School' (all on his own - now that's impressive on one level..!). Differences in opinion can of course place a big stress on any relationship, as can tiredness and general worries over everyday troubles, such as money or agreeing on what parenting methods to use.

The education aspect of tonight's episode took me back to the early days after our girl's diagnosis. In my head, I could have been that mum standing near the playground, trying to see what or who our girl was playing with. I never actually went that far, but I wanted to. The overwhelming fear of your child being left out, or just as worryingly, left to their own devices, is ever present, and something that probably never leaves you. Children with autism are different, and of course at some stage most other children realise this - I will never forget the day a girl in Sasha's class came round and said to me quite clearly and questioningly 'but I'm too old to watch Dora now?'. She was 6 - and probably lots of 6 year olds would have felt too old to watch Dora at a time when Sasha had it on repeat. Just like lots of nine year olds would feel too old to be watching My Little Pony now. Some of them might enjoy it when they come and watch with our girl, but they probably won't admit it openly. We are lucky so far, in that Sasha doesn't yet seem to appreciate these differences... but that time is coming.

For many parents there is a need to research and learn as much as possible once a diagnosis is given. I identified with the mum staying up late or getting up early to watch videos online, and I'm betting she has a huge stack of books on autism by the side of her bed too. For some though, reading is not how they like to learn, and they just want to 'get on with it'.

The schooling issue is a huge one which I won't go into in detail here, but my post Schooling for autistic children is one of the most-read posts on my blog since I started writing, which says a lot (second only to my post about creating giant bubbles - which tells me that craft blogs are so much more successful than autism blogs!).

In a nutshell, each child is different and will probably need an individual educational approach - for some, mainstream will work with the right support, some will need a special school (although in our area these only exist if you have a moderate or severe learning difficulty, meaning achieving lower academically than peers, which our girl isn't) and others will benefit more from being educated at home.

The mum in the show isn't exactly in denial of the diagnosis I don't think; she's just scared of it. She's scared of the label, and of what other people may think, and she's scared of doing the wrong thing by her son. I'd like to say I wasn't in denial, but when I look back over my earlier posts there are times when I went round in circles (that was actually the title of an old post of mine!), especially when being told 'she's not bad enough' or 'but she just seems like all the other children'. I always agreed with the diagnosis, but I think acceptance can come on many different levels and at different times. I've learnt to grow a thick skin, but although I may say that I don't care what other people think, of course that's not true. I still want them to believe in me, to trust that I am doing the best I can, and doing what I think is best for my little girl.

Again this week I felt sorry for the sibling, the older sister. Especially at the point where both parents left her alone to get her own tea. When you have other siblings, there's always an extra layer of guilt, hoping that you are doing the right thing by them too, giving them enough quality time when your attention is fully stretched. Our sibling is amazing; she doesn't complain (much) about the attention her sister needs, or the amount of control her sister exerts in our house due to the Pathological Demand Avoidance. She knows the helpful strategies to use and she just gets her - sometimes on a better level than we do, being as she's much closer in age. They share the wonderful world of Minecraft together and that has helped our youngest de-stress massively. That's not to say it's all plain sailing; our eldest can be very embarrassed of her little sister (here's a post where I explain more about those issues) and I can't deny that hurts me. But I do understand. The sibling in this show says 'but he's Joe. He's always been Joe. Why would you want him to be any different?'. As a parent, I think the only reason you'd want your child to be different is so they can 'fit in' to society a bit more, so that things will not be so difficult for them as they grow older. It takes a while for the penny to drop that we all need to help society change so they do 'fit in'. Everyone has a place in society, and wouldn't life be boring if we were all the same?!

Loved episode 2 and now I can't wait for the next installment. Great job BBC One and the cast/team behind The A Word!

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.