By Mari-Anne Kehler
My life is not a war. My son’s life is not a battleground.
Please don’t call me a “warrior mom”.
At the risk of offending my fellow autism moms, I must confess I cringe whenever anyone refers to me as a warrior mom. I know it’s meant as a badge of honor. Truly I do know that. It’s intended as a complement, alluding to the challenging job we have raising loved ones who are sometimes/often spinning off what we like to think of as planet “normal”. We are usually the ones hanging by our fingertips while clinging to keep our families, jobs, friendships and sanity together. And we do this while displaying our humor, intelligence, grace and rugged tenacity.
But the truth is: we are just human. We are most often lonely, tired, scared, worried humans who are simply doing the very best we can on any given day. And usually that “best” never feels enough. It’s impossible to live up to a standard we set to do-the-impossible. Most days I feel good if I’ve only forgotten to do a few things, haven’t pissed off too many people, and can go to bed at night thinking “Well, nobody died.”
“Warriors” are defined as “a person engaged in, experienced in, or devoted to war”.
I’m none of those things. I’m not engaged nor experienced in nor devoted to war. My life is not a war. My son’s life is not a battleground. Liam was born beautiful. Sincerely, extra beautiful. Strangers would stop us on the streets of New York and comment on his beauty. Blond, blue-eyed, chubby and deliciously cuddly. He was supposed to be easy to raise. I was a hippie mom. No stroller for me! I’ll carry him everywhere. We’ll travel easily! We’ll take life as it comes as a family! But almost immediately after his birth it was evident we were in for a different ride. His constant meltdowns got better by first grade, but then far worse — resulting in years of seizures, self injury, and constant escape attempts that were dangerous and exhausting. Our family life shrunk to the size of our small home — complete with special locks on all the windows and doors. Far from warriors, we were more like prisoners in a life we never imagined.
Eventually things got much better after years of struggle, specialists, spiritual grappling and as many mistakes as successes. Today Liam is a fun and responsible adult with many friends, passions, interests and hobbies. He will need lifelong care. And we’re confident he’ll have a pretty darn good life. But we didn’t fight to get here. We crawled. We risked the loss of our marriage, the loss of jobs and professions and opportunities, the loss of friendships and relationships that didn’t fit into our odd, unpredictable and sometimes unpleasant lifestyle. It’s not always fun to be with us. Hell, it’s often not fun to BE us. And then again, much of the time we are laughing. Hard. And loud. Our lives are less battle-of-the-warriors and more a black comedy jam. We see the absurd humor in our day to day attempts to get by.
If I imply life is a war, and raising Liam is a battle, I’m also saying we are more or less than a family, that he is more or less than a human, and I am more or less than a parent. And I’m not willing to say that. We are no better or worse than any other family seeking to create a loving home to raise the child we have, not the one we dreamed about. No family gets that kid. That kid doesn’t exist. That’s why it’s called a dream. We get to raise the child we were given, and our only job is to love him or her with all our hearts, enough to let them be who they really are. The best of who they really are, but who THEY are nonetheless. Not our imagined dream of who they were “supposed” to be. That is the fantasy. That creates the internal “war” that makes us think we need to be a “warrior”. That somehow we got ripped off, someone stole that imaginary child and replaced him/her with this substitute. Imagine being that child and being raised with the idea that you’re somehow a mistake! Whether stated or not, that message will come through: “You aren’t good enough. And I’m gonna wage war to get the real YOU back.”
Perhaps we are supposed to be warriors fighting all the forces who are supposedly keeping our child from their rightful services or programs or whatever. I prefer collaboration and creating alliances. They have always worked much better when we’ve sought to help Liam with schools, therapies and doctors. When we did fight or try to go to battle, the outcomes were rarely as good. Don’t get me wrong though, I’m a force to be reckoned with. But I try to be a force for good. When I am, I’m on the side of angels, and Liam is usually the better for it.
But “Warrior” sounds a lot sexier than “Collaborator”. It’s tempting to accept a title like “Warrior Mom” to compensate for the disappointments and fatigue. It would be juicy to swap my real story for a glamorous fable with a happy ending. But I don’t believe in happy endings. I only believe in happy moments. Because frankly, the journey is never ending. After the hardest years, even the simple pleasures can feel fantastic. We ate at a restaurant and no one stared at us in disgust or annoyance for all the loud sounds we make! We can’t find Liam’s favorite DVD and he didn’t trash the room! We got Liam on the bus to school and ourselves off to work on time with no incidents! These don’t feel like battles won. They feel like the heavy exhaled sighs of relief. They feel like real life. And I’ll take that over war any day.
And as days turn into years, the kid we thought was lost is the man who makes us laugh with delight, our hearts burst with pride and challenges us to be the best we can be too. Not super human warriors. Just simply our best “us”.
Courtesy of Laura Shumaker. This was originally posted here.
Mari-Anne Kehler is Chief Marketing and Strategy Officer at the business firm Green Hasson Janks and co-authored the Amazon bestseller Putting the Profit in Nonprofit. Mari-Anne provides consultation to nonprofits in the areas of operational and strategic success. She has been active in the community in the areas of disability awareness and fundraising and in mentoring families and professionals for almost two decades. Her specialty is creating successful transition strategies to optimize the special needs transition to adulthood.
Mari-Anne is also the director of FRED, the preeminent international conference that brings parents and professionals together to advance opportunities for adults with special needs to find homes and employment and live with purpose. She has been a featured speaker at schools, colleges and conferences on the topic of disabilities: awareness, transition to adulthood and the impact on families.
(I attended FRED last year and wrote this blog).
I really love this story and I RESONATE completely with your position on the term, “WARRIOR MOM.” No one person, no one event in my life, has taught me more, enriched my life more than the experience I have had as my son’s mom. To tell the truth, I discern that while both seem to hold their own in the world of powerful words, I do believe MOM will always be a bigger, more powerful, word than WAR, CHILD, too. This just is what it is… Thanks for a great read, Mari-Anne!
My I post this on my FB wall?
Yes, please share
I loved this article, so raw and real. These words stand out for me….”Far from warriors, we were more like prisoners in a life we never imagined.” What this means to me, there isn’t always a perceived war with the outer world, though I cannot speak for all. However, almost always there is an inner war to win. I say win, because is losing really an option? I don’t think anyone escapes that struggle, though I cannot speak for all. That has been my journey. And this, I believe, is why we are in the world, to come to peace with the war within our self?
Nicely said Brie – I like this quote “But I don’t believe in happy endings. I only believe in happy moments. ” Well-thought out reflective article for sure.
A very fine, “real”, detailed writing. Love the truthful accounts of doing what we parents do everyday, living.
Some compliments are well intentioned but greatly miss the mark. Poor analogies.
Laura speaks to the inaccurate terminology while letting us in on her pride and accomplishments of supporting and just plain living day to day with her family.
Herself, and especially her son’s, play and work is not warrior like.
Thank you for the glimpse.
But aren’t you battling against the discrimination, lack of resources, and education of people about autism. Aren’t you in a battle to help find out why it’s 1 in 68? Without warriors, we’d all lay down and die. I get it. But there is no insult in the term warrior. When I go to a spin class, I am a SPIN warrior. I know I am not in a war. When my daughter doesn’t graduate because she still can’t read, I am facing a battle. No not a war. But I am her champion. I am a warrior. And to spend so much energy on a word that is meant with no ill intention, why make such a big deal? Aren’t there other things much more important? Like why boys are now on the spectrum at a rate of 1-58. I will continue to battle and continue to be a proud warrior for my son and all other children affected by Autism.
Thanks for writing this. I have a 5 years old boy with ASD and he is doing fine, he is the real warrior to me. I thin of myself as a warrior too because the bible says that children are like arrows in the hand of warrior so I am proudly a Warrior mom
Here’s the thing: When you are engaged in fighting for the supports and accommodations your child needs to access the world on an equal basis to others, we have no problem with that. You are only doing what any parent does, and the fact you have to fight so much harder than the parents of neurotypical children in no way alters that basic fact. The parents we denigrate as ‘Autism Warrior Parents’, on the other hand, are not engaged in the same battle as you and have instead gone to war against their children’s neurologies, which is just a small part of our problem with them.
Naughty Autie, maybe you’d like to submit a blog about this to the Art of Autism. We do pay neurodivergent bloggers.
I hear you but Warrior also means ‘a person who is fearless and courageous in support of a cause or issue’. As a mother of a son who has autism, I see myself as courageous in what I have done to support my son’s cause. I am not, however, fearless, but fear has not stopped me from going after what my son needs. 🙂
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