It’s taken Sixteen Years

Even though my son was diagnosed as autistic at two he was autistic the day he was born. I remember trying to explain what we thought were idiosyncrasies to Playgroup Mums. Even then, without knowing I was asking for my boy to be accepted. Diagnosis just made it official. It became not just my mission but my passion to change the world for my son and not ask him to change himself. Why is being different so bad?We made momentous decisions. I would not work. Selling our house. Moving 1000km’s. Even choices like ruling out ABA and insisting on mainstream education which back then were more instinctive than informed; but theses choices were agonised over. These are not decisions we wanted to regret nor are they ones we expect recognition for. We’re parents! We want our kids growing up in a stable, loving environment knowing their parents wanted the world for them and offered it on a plate. Over the years I made many many mistakes. I learned from them and continue to learn now. Along the way I’ve always kept in line with my values. I’ve made connections and read many books. I’ve researched and many times put myself out of my comfort zone to advocate and lobby. I am an idealist. But honestly change can only happen by speaking up and speaking out. I question why or why not. Just because it’s done a certain way doesn’t mean it’s right or can’t be improved. I think the turning point for me was reading Steve Silberman’s Neurotribes. This book confirmed that listening to adults who are autistic is the best way to learn for my son. I am not autistic. I can’t truly understand what his life is like. Yes I’m his Mum and I would die for him but still very different. I had a couple of neurodiverse people as contacts in Facebook and have more now. These are my go to people. They are my son’s tribe. I also in a polite and respectful way call out anything I consider incorrect. Sometimes I rage and this takes a toll on my mental health. After coming through a few terrible years of bad mental health I have more clarity and energy than I’ve had in years. This is, however, built on the foundations of me Mumming. But creating a professional life is difficult after so long. So although I’m awestruck with the opportunities and exciting things happening now. I must tell myself this is because of good foundations. I put in the groundwork. I’ve lost friends along the way. We’ve always been broke. These are not sacrifices and my son, if you ever read this you are not a burden. You give us joy and we love you dearly. I’m not comfortable with some things I do but I’m glad I do them. I feel like the past 16 years have prepared me for now. I feel like everyday I walk out the door and say “watch out world I’m coming”.

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