The day Isla was diagnosed with autism we were handed a leaflet and sent on our way to try and make sense of what had just happened and what her diagnosis would mean for her and for us.
A leaflet and a few meagre words, nothing more, nothing less.
There was no support during the process, there was no support after the process, no counselling, no groups, nothing.
We had been thrown in to a world we knew nothing about and was expected to just get on with it. It was like being thrown overboard when you can’t swim and not being thrown a life jacket.
Anything would have been better than nothing because nothing is lonely, nothing is a never ending abyss.
All I wanted to hear was a very short reassuring sentence, that one very short sentence would have made a world of difference but nobody ever said those four little words…….
‘it will be ok’.
And so I didn’t believe that it would be.
I wish I could go back and tell my past self that everything would be fine, that we would all be ok, that Isla would do far more than anyone ever believed…. but I can’t.
I try not to think about that time now because it conjures up emotions I would rather not remember. I don’t want to remember that I felt like a failure, like a bad mum because I didn’t know what to do, how to help Isla or how to make sense of it all. Now I know that I didn’t know because nobody told me, nobody told us what to do, even the leaflet didn’t answer any questions.
That time of our lives was hard because we were stepping in to the unknown without hearing from people who had done the same. Strangely though as hard as that time was it made us stronger, it made us better people and I’m grateful for the lessons it taught me, one of which I think of every single day.
‘Be the person you once needed’
And that’s exactly what I try to be.
That’s what we should all be trying to be.
Autism is a journey, not a destination. They’ll be twists and turns, you’ll take the wrong direction, sometimes you’ll go around in circles before realising your route needs adjusting or you need another map, but the journey is beautiful, breathtakingly beautiful and your copilots, if anything like mine will be the most amazing copilots you could have ever wished for.
Whenever I see anyone starting their journey now, feeling lost and bewildered I do the one thing that I wish somebody had done for us….
I tell them that it will be ok.
Because it WILL be ok.
Maybe not tomorrow, maybe not today, but some day soon it will be ok.