Ed note: Please note, the following is NOT meant to be in any way, shape nor form an attack on those who choose to pursue biomedical interventions for themselves or their children. I realize that the term ‘Warrior Mom’ has taken on that connotation, and I want to be clear that it is NOT the one upon which this post is based.
I have a confession.
I’m not a warrior mom.
The term doesn’t fit. Never has.
I’ve never used it to describe myself, but time and again it’s been assigned to me.
I’m not comfortable with it.
It’s not who I am.
I am not at war.
Not with society, not with the glaring lady at the supermarket nor the neighbor who thinks my child just needs a swift kick in the ass. Not with big pharma nor doctors nor researchers. Not with the government, autism advocacy groups nor clean vaccine advocates. Not with those who seek a cure for autism nor those who find the word and all that it represents abhorrent. Not with the school district, the administrators who hold the purse strings nor the team who comes together to serve my child.
And I’m not at war with autism.
Warrior Mother – I understand the term. I know for others it fits like a glove. And that’s great if it works for them, fuels them, enables them to get up in the morning and start again. It’s necessary.
But it doesn’t fit for me.
Because for me, war means talking is over. War means anger. War means destruction. War means collateral damage.
For me, when talking stops, so does any hope of progress. When talking stops, so does any hope of building true awareness – not puzzle piece recognition as awareness, but awareness of how my child experiences the world and how we as a society can help ease the challenges she, and so many like her, face. When talking stops so does any hope of figuring out how to harness the potential – my God the potential! – of the 1.5 million people in this country living on the spectrum. When talking stops so does any hope of finding a place for those who may need the most support, but may well offer the most in return.
When talking stops so does any hope of creating a world defined by understanding and compassion. When talking stops so does any chance of making the woman at the supermarket look beyond what she thinks she sees or making the neighbor understand why my child behaves the way she does and that a swift kick in the ass is the last thing she needs.
When talking stops so does any chance of creating partnerships with companies who have the resources and facilities and minds to help. When talking stops so does any prayer of getting politicians to prioritize the needs of this community – even if we disagree at any given time what those needs may be. When talking stops there is no chance of creating an understanding of why the needs of this community can be not only disparate but at times contradictory. When talking stops so does any prayer of figuring out what we can do to represent not just those in the middle, but those at the extremes.
When talking stops it takes with it any chance of getting help. One doesn’t reach out to a hand holding a weapon.
When talking stops, we really are at war.
War means anger. Some revel in the anger – for them it is a source of energy. For me, it is an energy drain. It’s sucks the life out of me. Or at least the kind of life I want for my family.
War means destruction. Some would argue that we have been airlifted into this battlefield whether we chose to be or not. Some would argue that the destruction is already in progress and it’s up to us to stop it. It’s fight or lose everything. And I understand that. I do. It’s just not the way I choose to – the way I am able to – frame a life.
War means collateral damage. Autistic teens and adults fighting depression, addiction, low self-esteem and far worse because they have been told for years upon years that this heretofore inextricable part of who they are – the filter through which they experience the world – is an entity that we must fight at all costs.
But what are the costs to them? To my daughter as she comes of age and hears that autism is a mythical beast of epic proportions, single-handedly responsible for the downfall of a generation? What then?
There is nothing on God’s green earth that I wouldn’t do for my girl. But I don’t think that makes me a warrior. I think it makes me a mom.
For me, being a mom means digging deep to find finesse when I want to swing a bat. It means talking when I want to scream. It means painstakingly building connections – some days one at a time – when I want to curl up in a ball and call it a day. It means getting my ass up at 4:30 in the morning to write when I am desperate for sleep. It means sticking around to make organizations better when all I want to do is walk away. It means engaging politicians in meaningful dialogue when I want to tell them that I’m pretty sure the only reason that congress has an 11% approval rating is because their parents must have been included in the polls. It means continuing to talk to the White House, even when it feels like we’re getting nowhere. It means searching my soul to find common ground with those whose views are seemingly contradictory to mine. It means helping my girl to be everything she can be – everything she wants to be.
I have a confession.
I am not a warrior mom.