You might notice I've given the blog a bit of a facelift! I was getting a bit bored so have changed a few things around but it's still basically the same!
I've been wondering for some time about the point of the blog. I read quite a lot of other people's blogs, mostly blogs written by families in similar situations to ours. A lot of those blogs are really lovely and well written and I couldn't see the need for another blog on a similar vein. But then I realised I only read those blogs because I'm interested in what they have to say because we're in similar situations. Many of the people that know us won't know other people in similar situations and therefore probably don't read any other similar blogs. So the long and short of it is that I'm going to try and update the blog more often to try and offer an insight into life with a disabled child to those that wouldn't read any other similar blog. I'm also going to try and use it to give information on William specifically to friends who are keen to understand more about him as an individual.
Recently we've been trying to understand more about how best to communicate with William. We've started having input from the charity Sense who work with deafblind people. It's really made us think differently about how we communicate with him. Before we had William we wouldn't have had a clue how to start trying to communicate effectively with someone like William. Sometimes I take a step back and look at William and try to see him how other people might see him. I see this floppy boy, eyes rolling in his head, not focussing on anything, often making no sounds. Maybe when you've seen severely disabled children this is all you see. Let me tell you there's so much more there and when you start understanding the reasons behind their actions it starts to make more sense and you start to see past their seemingly weird behaviour. Have you ever seen a disabled child being pushed down the street and they've got a look on their face that says 'nobody's home'? They might have their eyes open but they look completely out of it, like there's nothing going on inside. Well did you know that for children like William with brain disorders, it takes so much more time and energy to process what is going on around them. When William is out and about there are so many new sights, smells, noises, people, etc that it can become overwhelming for his brain to try and make sense of it all. It's tiring for him and so often he just switches off. There's too much for him to make sense of so he closes down.
William has a visual impairment called cortical visual impairment which I'll talk more about another time. We spend time, using light up toys and his ipad, getting William to practice using his eyes. When we do this we try to remove all other stimuli. We turn the lights off and we don't talk to him. This helps him to use all his brain power to focus on trying to interpret what his eyes are seeing.
Next time you see a disabled child, try and see past the obvious and through to the little person in there and spend time getting to know them. They have personalities too, likes and dislikes, it just takes more effort to figure them out!
Many of our friends are wonderful at getting to know William. They ask us questions about what he likes and dislikes and ask us about his different responses. But there are still some people who to be honest seem a bit scared of him! I know this comes from a lack of understanding and they simply don't know what to do. I don't blame them, I would have been the same before I had William! So here a few pointers in communicating with William. I'll add to this over time and it'll hopefully be helpful. Feel free to ask any questions about specific things you are interested in.
1) When you talk to William it's good to touch him, because he probably can't see you. Perhaps stoke his arm, hold his hand, stroke his cheek. Some children with disabilities don't like being touched, especially if they have sensory processing disorders William doesn't mind being touched at all but it might be a good idea to ask the parents/carers if their child will mind.
2) Don't feel the need to chitter chatter, speak clearly, focussing on the key words. You might say: Hello William, it's (your name). You could repeat your name a few times to help him to remember who it is. You might choose to always greet him in the same way to help him too.
3) If you are speaking to William in a noisy, busy environment you can get close to his ear to help him to hear you better.
