This morning I was building “Disney castle” for the kiddo for the 19 millionth time. I was getting a bit frustrated to be honest, but he wasn’t. He was LOVING it. He watched me build again and again with such focus, such pleasure. What is it about the process of building this castle that he loves so much? And then it hit me.

Kiddo had little regard for the end result. Whilst it had to be perfect, he didn’t need it to stay glued to the spot. In fact he would regularly destroy the pain stakingly built castle almost immediately and then look at me again with such joy in his eyes, such hope that I would build it all again for him to watch and enjoy. He was totally invested in the process. Not the result.

And maybe that’s what this journey of assessments and therapies and interventions is all about. The end result, the end diagnosis doesn’t mean anything. We could regularly rip up the diagnosis letters in the same way kiddo so casually swipes the blocks out from under the Disney castle tower. Because in the end it’s the process that we are learning from, not the result. In the process of assessments, appointments and paperwork we learn more about the kiddo and more about ourselves than any official document. If I had received a letter saying “your child is diagnosed with severe autism” 2 and a half years ago, I would have had no idea what that meant.

It’s from the journey that we learn. From the journey that we become rich in knowledge and skills we never dreamed of.

I still believe the label of a diagnosis is important in this world (see my other blog for more on that). But perhaps I need to follow the kiddo’s lead, and see the journey as we build our Disney castle as the way we will understand our relationship. I need to invest my heart in it more. The relief does come when the diagnosis is formalised, but there are still many times ahead where our castle will be knocked down. I need to see it as a gift, that that means we get to build it again. Even on the days when I’m tired, lonely and feel downright defeated. Every appointment, every block we build, is an opportunity to educate myself a little bit more.

Thanks for the inspiration kiddo.

Thanks for reading,

Danielle