There are the days that I see my Holland for what it really is
A breathtakingly beautiful place
A place full of love and compassion
Freedom and camaraderie
And a place where children hurt and mothers’ hearts ache with the impotence of not being able to make it better
- From My Holland, October, 2010
Friends write to me privately. They are steeped in guilt. And anger. And guilt for the anger.
You see, we merry devotees of the neurodiversity movement are not supposed to be angry. Ever. Or so we tell ourselves. We are supposed to be celebratory. All the time. Or so we’ve decided we must.
Because we’ve got work to do. We need to be marching down the street en masse like a Mexican paranda, clanging our tambourines and shaking our maracas, calling friends and family out of their homes to join us in a raucous celebration of human difference.
But what about the times when our children are hurting? When their siblings are taking on more than their tiny shoulders can bear? When we are breaking?
Must we still blow our horns and throw our confetti? Must we still, even in those moments, plaster on smiles and celebrate what feels just then like a Cracker Jack box of pain in which somewhere, just out of reach, someone swears there is a prize?
Nearly a year ago, I wrote the following.
This road is not easy. It’s just not. Watching your child struggle is hard; feeling powerless to make it better is abject torture.
Admitting that this brand of parenting is emotionally fraught – that as beautiful and rewarding and exhilarating as it can be that it can also be conversely but equally painful and messy and HARD does not make you a bad parent.
Saying out loud that you’re hurting does not make you an enemy of the autism acceptance movement. It makes you human.
.Our children struggle in ways that no child ever should. At times I swear that if my girl could climb out of her own skin she would. No matter how much incredible progress she’s made, no matter how hard everyone in her world works to try to help smooth her path, she still has to fight mightily every God-damned day. She fights to communicate, to connect, to participate, to interact – sometimes just to BE. As hard as it is for her Mama to watch, it’s got to be a hell of a lot harder for her to live. And that kills me..To say that out loud does not make me a traitor..It makes me her mom..From Thoughtful, Not Scrubbed, 2012
.I’m also going to remind you that even in the midst of all the positivity, you’re not human if you don’t have moments where you wish to god your kid didn’t have to struggle and all you want to do is tell autism to fck itself. That’s the secret that no one will talk about. But it’s what makes us real, and it’s okay. You’re not a traitor for not loving this every minute. It’s hard. But you know what doesn’t help, isn’t productive and is wholly undeserved? Being angry at yourself because you’re angry. THAT’S the cycle that becomes unbearable. And it’s not fair to you – and it doesn’t help him..What would you tell me if I were saying this to you? That I was pissed at myself for wanting an easier life sometimes – for having days and weeks and hell, even months when I just didn’t feel like I signed up for this? Would you root me on? Hand me the hair shirt? Tell me I was an asshole for being selfish? No. Because it’s not selfish to sometimes wish things were easier – for both of you – for all of you. It’s just … human. It’s what you DO with it that matters..And don’t forget the pressure valve. You have to slowly let it out somewhere. Laugh if you will, but for me, it’s going outside. Alone. Looking up. All the way up. Follow the clouds up. It works. For me, it’s the reminder that the world is so damned massive. That the sky doesn’t have an end. That you can’t see across an ocean. That as huge and all-encompassing as it all feels sometimes, we are really so small that nothing – no matter how big it feels within our walls – can really be that big. I don’t know, I just find it reassuring. I’m here. You’ll get through the cycle. Look for the beauty. No matter how hard it is to find sometimes, the Cracker Jack box doesn’t come without a prize.