Sometimes I get asked, or it’s assumed, that my life is hard. I think about my life. The good bits and the bad bits, and I don’t even know how it’s different.
That’s the thing.
I can’t imagine a child who did what I asked the first time without requiring a valid reason and offering a 5 point argument in return, I can’t imagine saying a number and not hearing a small voice interject ‘excuse me Mummy, Thomas/James/Percy is the number 1/5/3 engine.’ I can’t imagine watching my child walk down the street without stopping to pretend to load himself up with coal. I may watch those parents of other children with a mixture of fear and awe, but I have no desire to change my child, or those parts of my partner or myself that are reflected in him.
Don’t get me wrong, some days flat out suck. I have a 5 and 3yr old. Some days SUCK.
But the hard part has been other people.
I get that this is true for all parents, but if you have a kid who is any way out of the ordinary, or even a perfectly ordinary kid and you happen to be around people who have forgotten/don’t even know what an ordinary kid behaves like; then you will get handed advice (I say advice, I mean shit) from other people. These people may mean well, but they’re jerks. (If you’ve ever told someone your kid is Autistic/ADHD/any other genetic condition and gotten an “Oh I’m so sorry!’ response then you’ll get what I mean when I say nice people can still be jerks.)
There are lots of things I’m bad at – running in a straight line without falling over, singing (I am unbelievably bad at singing), not finishing the bowl of chips despite being ridiculously full and knowing that I am obviously going to regret it. But, I’m not a bad parent.
There are people who have a list in their head of what it means to be autistic, and what it means to parent an autistic child. This list is often negative. I know it is, I’ve heard it many times – Violent. Aggressive. Lacking empathy. Needs discipline. Can’t let them get away with anything. Only way they’ll learn.
These people can often be found at public parks and in shopping centres, but sometimes they’re close to us too. They’re our friends and our family, and they whisper to our fear that we are bad parents. Bad parents parenting bad kids, and doing it badly.
And when we hear that list, what do we do?
Sometimes we walk away. We grab our beloved children and we hightail it the hell out of there. We rant. We scream. We tell the jerk that they’re jerks and give them the finger. We hold our children close and whisper ‘You are loved.’ But how do you shake off the condemnation of others in something that is so close to your heart, especially if your kid totally did push the toddler down the slide?
I have my own list, a list detailing the courage of my 5yr old Son – the way he takes a deep breath, bottom lip thrust out and eyes wide as he walks, haltingly, knowing it’s going to hurt, but not quite knowing how much it will hurt and in what particular way – as he moves his lanky awkward body with his lanky awkward brain into a New Space. This is goddamn bravery. A list detailing his many acts of empathy, love, selflessness and compassion to those who don’t or choose not to see it – the Boy who strokes my face and tells me he wants me to cuddle him tonight ‘and your Batman Thomas Mini will be there too!’ This Boy who loves so fiercely, and quickly and whose heart can be broken so easily.
When I’ve pointed out this list to others, what I’ve found is that my list isn’t wanted. Or it’s ignored with a sweep of a hand, an ‘of course he does good things, but he does bad things too right? Bad things?’
Or worse still, when I give the list and instead of feeling empowered I feel dirty. Because, I shouldn’t have to carry around my own list, my list that starts with ‘But, he also does this…’ whether I actually say those words or not. The ‘But’ weighs heavily. It panders to the idea that his existence requires a balance, that as long as my list is bigger than theirs that he is valuable. I should not have to defend my child’s existence by weighing up lists. No-one should. And then there’s the Boy.
Is he balancing his worth based on lists? Does he hear the ‘but ‘ clanging into place during the times I have officially Lost My Shit and told the jerks off. Does he feel like only bits of him are worthwhile? Loveable?
Maybe it’s not other people that are the hardest part. Maybe it’s the attention I pay them, the parts of them I let into my parenting and into my relationship with my child. Maybe the hardest part has been, and always will be, myself. I don’t fully know how to navigate this, to teach my kid that all of him is loveable when he’s functioning in a world that often taints him and others like him negatively. But I can control the world I build for him with me, and that world will quietly have a conversation about how it’s not ok to push other people, even when they’d been at the top of the slide for ages and that ‘I’m strong enough to push them!’ doesn’t mean you necessarily should. The world we build will be gentle, and it will explain (repeatedly, probably, and with visuals) and slowly, we will add more people to our world; people who love us and people who understand. People who know what to do when I so often don’t. These are the people I will listen to, the people who will speak to my heart; and the people who, I hope, will eventually become the world for everyone else too.