I would get really angry, moody, I'd constantly snap at mum or my sister and then it would just… be like World War III cause I was always angry, um… we'd fight all the time but I think mum and my sister understood that I’m in pain, don't make me angry, otherwise it's not a good idea.
When Anna's in pain, she, you can tell, she's just… her mood changes, her face… changes, her expressions, the way she walks, the moves, it all changes - you just know when she's in pain.
Um… we try not to make to much fuss about it, you know, I'll probably prompt her, you know do you need to have a lay down or do you think that’s you’re going to be right in those shoes or something like that but um… If you just… body language gives it away all the time but she's pretty direct, she'll tell me if I'm not switched on.
It's really important to remember how you communicate your pain - some kids whine and moan and groan and you need to think about what that's telling your family members.
Some family members might find that quite annoying and actually ignore you which doesn't get anyone any results.
so it's good to have a communication with your family members to find out what the best way to communicate your… your pain with them is, whether you want to tell them that you've got pain, whether you want to give it a rating out of 10 of how bad your pain is and then actually telling them what you want them to do about that is going to be helpful for not only you but your family member to understand and how they should be reacting to you as well.
And regarding communication one of the things we know that Bayly needs to learn more now is that his parents aren't always with him so and he's old enough now to be able to say “Look I'm hurting, or I'm tired or I'm sick.
Can I have a rest or can I have some pain killers?” and especially at times where he's at school for six hours - we're not there when he goes on school excursions, and overnight ones especially, we're not there so we've included it in his personal learning plan which is part of the communication we have with school, so that his teachers are working with Bayly as well to encourage him to speak up and… advocate for himself if he sees a need and… just to basically communicate how he's feeling when he's feeling that he needs a bit more support.
