Mr Danger and his twin-sis are about to turn another year older next week – the big 8!
To think that we have had another brain surgery in the past 12 months, plus a further confirmed diagnosis for his twin of intellectual disability, makes me feel elated and exhausted at the same time!
Answers are slowly unfolding over time, because kids who are neurologically different face different types of challenges to those who are not – there is no checklist, standardised test or baseline to go on, other than their own. And as their parents, we are constantly learning to.
As I’ve said many times before, I don’t live with a disability but I sure as hell advocate and assist those that do, and in my instance – I refer to my twin son and daughter. Just when we think we may have figured something out, we get thrown a curve ball or another set of questions which need answers to. Not all those answers come to light the first time though, or even the second, third or fourth!
Sometimes we don’t know any of the answers, and neither do the doctors. We are on a journey of learning and we take Mr Danger’s lead. The latest is that we are now battling with some extreme behaviour issues which are impacting on his learning, growth and development. There is no easy answer other than to take day by day and experiment with different medical and therapy options.
We are lucky to have guidance from a great team around him about what we can trial and error, but like everything, we can only be guided by Mr D. It can be difficult at times for his sisters to understand why he is challenging at times and it sure does upset us all to see him distressed. This is when we are at home. So you can imagine when we go out into the community, the impact and emotional toll it takes on us.
I don’t offer explanations to people anymore, the sizeable scar on the side of Mr D’s head usually is indication enough that he is struggling with something outside the ‘norm’. They only see a scar, they have no idea the impact that one scar has had on him, and us as his family as we support him.
We love him the way he is, we only want to take the frustration away from him that he encounters daily, but we know that takes time, effort and persistence with chipping away at these challenges for him.
We are here to support him, and we thank those that continue to do the same, who become involved in getting to know our family and our dynamics, and hopefully make the next family who have this rollercoaster ride in front of them, feel just as supported as what we do.