warrior mom

 

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.

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34 thoughts on “warrior mom

  1. You may not consider yourself a warrior mom but you are truly an amazing Mom! As a special educator, I continue to be amazed and in awe of your perspective, your determination, the way that you advocate and the intense and incredible love you have for your girls. Brooke and Katie are lucky to have you.

  2. With all respect, I must disagree. I think it’s a question of defining which war you are participating in. The war, in my opinion, is to make a better world for people with autism. Jess, I think you are a true warrior in how you pursue the goals and ideals you passionately believe in. And I appreciate you for this- as well as your ability to eloquently articulate what so many of us feel.

  3. You are an amazing advocate,warrior or not. Thank you for opening up your life and writing the words that almost every damn time, make tears stream down my face. Not because it’s always sad,but,it’s always familiar and in my everyday life,that’s a rarity. So thank you.:)

  4. I was talking about this too. I’m no warrior either. It never fit me.
    I feel more like the Elvis Costello song of peace, love and understanding. I want my boy to be at peace wIth who he is. I want others to love him the way he is, and I want him to love himself. And I want the world to understand that he’s different, not less.
    All these ideals…I learned by reading your posts about your family. Thank you for this path.

  5. I think that no one title fits all of us, but whatever you consider yourself to be before the word “mom” – really doesn’t matter – it’s the title “mom” itself that defines you….. You are a mom, and a damn good one!! and that is the title everyone should consider the importance of before feeling the need to “add on”!!

  6. “For me, when talking stops, so does any hope of progress” Perfectly said. We need to continually engage everyone in our lives to make sure our children receive the supports they need, and the understanding and respect they deserve. That is how we are going to change this world. One conversation at a time.

  7. I know just what you mean. I’m more of a Can’t We All Just Get Along Mom, but that’s harder to fit into teasers on Oprah and Dr. Phil. Just as simple, generic terms don’t do well describing people with autism, they don’t do very well describing us parents. It’s all way more nuanced than “warrior.” And really at the bottom of it all, I feel like if I think I’m fighting autism that I am fighting my child. And that’s not okay with me.

  8. I am a mom who still is angry, probably always will be at some level, that my son suffers because of his autism. Yes. He suffers. What I hope is that I can have my own experience, love my boy in my own way, without bearing the judgment of others who think I don’t accept him for who he is or that I’m somehow misinformed. There is nothing warm and fuzzy about his autism. He, however, is an incredible human being who I love with all my heart. Understanding and acceptance by others is key. But true acceptance and understanding means accepting the good and also the bad. I need to be able to say out loud that for eight years now, even with the best supports, his autism is more bad than good. Hopefully that will change. But at the moment, it’s the truth.

    All that said, people on the spectrum should also feel love and acceptance when their experience is good! I should not try to validate my experience by not acknowledging the gifts and perspectives of those blessed by ASD.

    The quest for validation of our perspectives is the battle that seems to have no end in sight. Let’s stop judging each other. Let’s feel the freedom to respectfully convey our good and bad autism experiences without inciting a passive aggressive riot. Then and only then will we be able to move forward.

  9. It is easy to see why someone would refer to you as a warrior Jess. A warrior is couagous and passionate and willing to sacrifice anything for those they are destined to protect. In that way it describes you to a T. You choose to use your words instead of your hands. Your words Jess have rallied the troops, encouraged us to keep fighting our own battles. If you are not liking the term Warrior perhaps General would do. General Jess as a nice ring to it. Either way I salute you and thank you for all you do and more importantly HOW you do it. You are an example of how we can change this planet with Grace and dignity rather with ugliness and disrespect!

  10. It’s the season of hope. Hope for the New Year. Hope for the future. And always, hope for our kids.

    Personally, I don’t have need for the warrior analogy. War to me says battle. I’m more fueled by hope and success than a constant fight. Do I get angry at times, of course. Do I get so frustrated, I scream. Yup. After I get beyond those emotions, I try to figure out a way to move forward. I find a way not to fight, but figure out how my daughter can move forward in this world, as she is, and not feeling like she’s unacceptable as she is.

    Don’t mistake my perspective for quitting. That won’t happen. There’s a saying in sports that there’s no I in team. However in the word quit there is an I, and a U (you), just as in the word autism. So, what I like to say is there’s no quit against autism, not for you or I. We will find a way for these kids to live a full life.

    There’s a song from the group Coldplay that I’ve been listening to a lot lately. It’s called Tear. To me it speaks of contrast, tears representing struggles and waterfalls representing beauty and goodness.

    Lyrics such as below speak to me as far as not quitting.

    Don’t want to see another generation drop
    I’d rather be a comma, than a full stop

    Maybe I’m in the black
    Maybe I’m on my knees
    Maybe I’m in the gap between the two trapezes

    But my heart is beating and my pulses start
    Cathedrals in my heart

    As we soar walls
    Every siren is a symphony

    And every tear is a waterfall

    I think it’s a great positive message of hope. Happy New Year!

    Have a listen:

  11. Love your thoughts on what war is and does…I feel similarly. War causes so many negative things and makes us, by nature, too defensive. We need to put our differences aside and work together to forge a better path for our kids. Being a mom means waking up every.single.day and doing what it takes. I am “just a mom”, too.

  12. I am the father of a little boy with Asperger Syndrome, and I certainly am not a ‘Warrior Daddy.’ I don’t like these types of labels because they put the focus on the parent and take it off of the ones deserving of it… the man, woman, or child on the autism spectrum. I don’t do anything special… I simply do what every other parent of every other child does… My very very best to love and care for my son, and provide the best possible life for him. (for the now and for the future) I’m just following a slightly more interesting and eccentric script. Feel free to drop by and check out our adventures in ‘Haydn’ World,’ (http://haydnsworld.blogspot.com/) – where we live our life with a heavy does of humor as well a little dash of madness – Because the autism spectrum is entirely too serious to be taken seriously.

  13. Holy cow, “One doesn’t reach out to a hand holding a weapon.” Thank you. This struck a deep, resounding chord in my soul. How insightful and absolutely true it is. More than anything, we need as many hands reaching out as we can, and it’s our responsibility to give them a reason to reach. You continue to put into words the things I haven’t been able to. You are an inspiration. Thank you.

  14. Finally have my daughter reading DOAM! She got all emotional seeing the similarities between Brooke and Bells. I am so happy we have Diary to help us on this journey. Thank you, Jess and bless you and your lovely family. gail

  15. Thank you Jess. Thank you thank you thank you. I am so incredibly thankful you wrote this… Warrior or not, it is the sentiment you express that resonated. Warrior is just a word – the Dalai Lama uses it effectively, but peacefully, sometimes.

    What is so true is that you can’t reach out to a hand holding a weapon. Your Facebook response (Dec. 10th) to someone calling the posts from your blog group re ‘Unthinkable’ (the ones who were shouting victoriously about never feeling *too* crazy; apparently it is okay to feel like we’re losing our mind, but just not tooooo much), those Moms were “powerful warrior healer Moms” and that stopped you in your tracks and you were thankful. That made me, and maybe others who might not always feel that strong (although I’ve never lost my mind), possibly feel the opposite… like weak, wusses (sp?) who are not healers… fantastic is what it felt like to me (not). I could easily be called a warrior mom, but don’t identify with the lable. A few months ago I spoke on national TV in my country, advocating for early diagnosis to enable early intervention for kiddos on the spectrum. I advocate for other families, for my kids, in the schools, in doctor’s offices, wherever. But I don’t come holding a weapon to those wonderful Moms who may not always feel like a warrior, I would open my door, I would offer respite, and I would listen. And I have.

    I met a Mom who hadn’t been on a date with her husband for 10 years. Her 11 year old autistic son was not toilet trained, non-verbal, blind, and no one could look after him but her and her husband. She was full of love for her son, but she sounded like she was at the end of *her* rope (which does not necessarily lead to ‘Unthinkable’). A BI on our team that worked with her son, and myself, offered respite.

    Over this year of listening, and loving your stories and your girls Jess, I had thought your door was open too. In a virtual way. This post reassures me your are holding a cup of coffee, not a weapon of derission, when someone knocks and you open your door.

    Thank you.

  16. I thought about this post all day. So well said in your amazing way. You simply are a beautiful, generous and inspiring woman, mother, friend. Happy new year to you and your family.

  17. YES YES YES! Thank you for this post! It’s JUST what I want to say, but you said it FAR better!

    And I think it’s okay to not be a warrior. I think it’s okay to just be a normal mom in something of an abnormal situation.

    I also don’t like being compared to the warriors that serve our country. Who risk life and limb to protect our freedom. It’s not the same.

    I fight. I stress. I cry. I TALK. I’m a mom, too.

    and it’s enough.

  18. I look up to you in so many ways Jess. your calm acceptance and love of your girls always brings a smile to me.
    I still feel angry. I still feel at war with this life that was handed to my boy. I am still just angry as hell. Does that ever go away? I am afraid that when the anger settles that I will stop getting things done. Because it makes me put one foot in front of the other right now.
    I want to be a non-warrior and a non worrier. I am just not there yet.

  19. I am an Autism Activist. Activism is to pursue political or social change. I too, have never felt comfortable with the warrior mom analogy. Would I go to the ends of the earth for my son? Absolutely! But I choose to educate as many as I can along the way. Conversation, dialogue and knowledge are empowering. Without educating others, assumptions of our children’s behaviours will be made. Most often, these are the wrong assumptions because people are simply unaware of the complexities of Autism. Teach the ones who will listen and ignore the ones who don’t. I often say, ‘You are either apart of the tide, or you are standing in the way.’ With 1 in 90 children diagnosed, our tidal wave for social understanding and acceptance will soon blow the nay-sayers and eye-rollers clear out of the water!

  20. I have the spirit of a warrior but work in the confines of a civilized society. :-) I am only at war with the obstacles placed in my way in efforts to make this world a better place for my kids and for others.

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