The Accidental Activist

What do you think of when you read the word activist?

Pre-autism the only thing I had ever activated was a credit card account.  I’m pretty sure they used activator in my hair dye too, if that counts for anything.  I wasn’t a total joke-I was an executive at a Fortune 500 company with clients all over the country- but I had lost touch with the really important things.  Back then when I read the word activist it made me think of a lone woman living in a tree so it wouldn’t be chopped down, or those folks who stand in front of Saks and attack people who exit wearing furs with cans of spray paint.  Certainly not me, right?

Of course, post-autism I became a bit more open-minded…funny how that works.  I read a book by a celebrity-activist.  I started reading blogs by moms-turned-activists.  I quickly came to appreciate the efforts of the parents who came before me and stomped out a path from nothing so that I might move more quickly down the road to recovery with Harry (and by the way moms-that-came-before-me: I think of you guys and thank you silently  What you guys had to go through without yahoo groups or facebook to connect you boggles my mind.  The Thinking Moms know you are the real heroes…know that.  You are appreciated, admired and loved here.)

Anyway, as months turned to years and we became veterans of Autism conferences, treatments, practitioners, I found more and more people being referred to me for help.  One of my passions has always been mentoring people and developing talents…helping them grow professionally.  I shifted focus from the corporate world to the autism world.  My husband shared our precious evening hours with strangers and old friends alike who had gotten the dreaded diagnosis and wanted to know what to do next.  Some friends and I started a secret newbie board on facebook, with 25 or so of us and 2 newbie parents.  That number quickly doubled, quadrupled and ten-times-ten-folded.  Helping people one by one was good, but there were too many that we weren’t reaching, and couldn’t in that type of forum.  Even though by this time I understood what was really going on with our government, the medical field, and the pharmaceutical companies, and even though I took the time to read pubmed studies and every book written about new treatments by doctors I respected, and even though I talked candidly to folks in restaurants, malls, bars and playgrounds about autism and environmental toxins including vaccinations, I still did not think of myself as an activist.  I still shaved my legs and wore platform heels on date night, so obviously I was just a mom, talking to other moms about what had happened to us, and how to prevent it from happening to their child.

The idea behind TMR was born at AutismOne last year and really, the original idea was one of support.  (By the way–you’ve heard by now we are hosting karaoke but if that is not enough to compel you to get your butt to Chicago, let me tell you–you will find support there. Game-changing.) Too many people face Autism without family support, which is shameful—I’ll get to this in another blog post–or as single parents because we all know about the divorce rate, without a solid group of people to lean on who really, really get what it is like to be up from 1 to 4 a.m., exhausted, with a child who is compelled to run and scream, smearing feces on the walls, hurling objects, hitting and biting you.   I will never condone the actions of parents who take first their autistic child’s life and then their own, but I try to understand the depths of despair one must be in to get to that point.  I feel it is my life’s mission to try to prevent that from happening.  From even getting close to happening.  So, we thought, we’d write a book.  Sharing our individual stories in depth, our experiences, our particular types of Autism to reach more people and lend, as best we could, the support and knowledge to keep moving forward.  But still, I felt I was mentoring, educating.  Certainly not an activist.  I mean, I was not sleeping in a tree collecting puzzle pieces for the cure or anything.  (I know.  I’m accidentally judgmental too.  I have a lot of crunchy friends who will be whacking me on the back of my head with my platform heel later.)

The book is written and being edited.  Its coming; hopefully soon.  The original idea behind the blog—before we started writing it–was to get out there and build a following.  We realized after the first few days that we had unleashed something different than what we’d anticipated, that hadn’t existed in quite this form before, and suddenly the blog was front and center, our baby.  A baby that will not have anything toxic injected into it, for sure and certain.  Twenty-five people who are friends first, forming a company, egos aside, to share knowledge and support on a daily basis for the thousands and thousands of parents out there just learning about their child’s diagnosis.  Doing what it takes—and man, we’re learning it takes an awful lot—to reach out and connect families.  So I’m an accidental blogger as well.  OK, I can accept that one.  I’ve always liked writing.  But activist?

It was a comment on the blog complimenting our activism one day that made me think that maybe I was.  That maybe I had been all along.  That maybe, just maybe, the narrow-minded version of activism in my head was a caricature and that the definition of an activist is what we are all doing, each and every day.  Spreading the word, not taking NO. Educating, mentoring, supporting other parents, showing them the way.

Maybe we didn’t know exactly where we were headed when we started TMR, but we’ve got a pretty good direction now, and some great surprises coming soon.  I’m embracing it.  All of it.  I mean, my original plan was to have one perfect kid, and I got three perfect ones instead…including Harry.  I was a lit. major who ended up a successful banker.  God laughs at our plans, right?  So…Thinker.  Revolutionary.  Activist.  Maybe it wasn’t so accidental after all.



Founding President, The Thinking Moms’ Revolution

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21 Responses to The Accidental Activist

  1. Guilded Thinker says:

    Love you, Goddess! I can’t wait to meet all of you at A1!!!

  2. Ditto!!! You have my passion……….I will never give this up………I found out in Jan 2008 at a DAN conference. I saw the research that showed what mercury can do to our babies bodies given the wrong environment. People thought I was crazy at first, but you know what I like being crazy when I’m behind the truth. Can’t wait to meet everyone at Autismone-Generation Rescue:)

  3. kimspencer says:

    Accidental Activists indeed! If someone told me 10 years ago I would soon march on Washington, email Congressmen and newsreporters constantly and end up here, I’d have laughed!!!! But even in light of the sobering and frustrating and mindblowing subject matter, I’m so glad to be here with you all! xo

  4. Baby(food)Steps says:

    ACTI-What?? I have to agree that 10 years ago I was pretty timid and naive and thought the world was full of happy wonderful people who were looking out for each other… I still beleive there are a few of those people out there today… but my definition of who they are and where you find them had changed DRASTICALLY… as I balance each day on the tight -rope between autism and mitochondrial diseaese, I want to Thank you all for sharing your thoughts and your voices so that others of us “thinking moms” know we are not alone and that it is ok to call ourselves the A WORD! 🙂

  5. Lynn Mulder says:

    Just found you on Facebook a couple of weeks ago. I look forward to each post. I have learned a lot, and have also found confirmation in what I already thought to be true. Thank you for all your work!

  6. Christina S. says:

    I often think of the mothers who had to go it alone without social network, support groups, anything. I do not know how they did it, I am sure alot of them didn’t, couldn’t and my soul breaks for them, especially their children! They are the true autism warriors!

  7. KFuller says:

    For the first time in 16 years I actually feel the tides turning. Hell, the whole world is turning. Keep your voices loud.

  8. Happy says:

    Only yesterday my husband said to me, “I have no idea how anyone can do this alone”. It’s way too hard. My heart and admiration go out to those that do it….that survive it.
    Also thanks for mentioning those that end their child and their own lives. I completely get that and feel I was at the edge of that cliff many many times, but not for a long time now, thank goodness. There must be so many cases. There is a story waiting to be written and what are those numbers? It’s unthinkable to most people. That story would be worth writing to highlight we need more help for these families.

    Also I wish wish wish I could be there for the hugs and singing in Chicago and to meet some of you wonderful people in person. I will be there in spirit and I will even be proudly wearing my heels that day in solidarity!

    • goddess says:

      oh if you can get there–get there. It is an amazing place. worth the time and money, thats for sure.
      If you ever get to the edge of that cliff again–know we are here with you. You really really are not alone.
      xo goddess

  9. sarahnicole8 says:

    Wow, Accidental or not, your blog is powerful. Best laid plans and everything. When my son got his diagnosis I was driven and focused and gains were made over nearly 2 years. Biomed was our saviour, brought my son back to this world, he’s not verbal, but he’s present, he got his giggle back. Then two years later my whole life freefalled, his health was a constant issue and I felt like I was doing it all alone at 26, and I was. My husband couldn’t cope, his not coping and depression quickly became impossible to live with, frightening,dangerous. Last year me and my two young kids (6 ASD and 3 NT) ended up in crisis accommodation to get away. Angels were watching over us, or something because the one crisis accomodation that was suitable for kids with special needs in Melbourne became available that day. I’m on my feet again now, I’ve managed throughout it all to keep my son on the Specific Carbohydrate Diet,which is extra restricted due to his numerous allergies. I’ve kept up the basics, the fish oils, probiotics, but that’s it. I know he needed more, he needs more, but I did all I could. Now I am once again strapping on my own activist gear, my biomed hat and walking that path of recovery.

  10. Come to the Beach says:

    You were purposely placed here and given your fierce passion, intelligence, drive, and especially your compassion for “such a time as this.” God doesn’t make mistakes or accidents. He has created warrior moms to save His children and bring down the towers of worldly powers.

    As one of those early moms, seemingly before Google, I had to take my 20 year career project management skills and research experience to find however and whatever was available to bring my son back to me. There was nothing in this town or this state. I soon found myself having to educate the Early Intervention social workers, the local college special education and psychology departments, and the professional therapists at the local children’s special needs center. Nobody knew what this “autism” thing was. The chief hospital neurologist still wanted to blame it on stereotypes such as Refrigerator Mother or over-protective older mother. They were still teaching this crap in the state university. I was told to put him in an institution and keep him happy. When i fought that advice, I was hounded and ridiculed by all the people who were supposed to be helping me.

    Oh yes, taking my baby and leaving this planet was creeping into my nightmare life. He almost died from his GI and brain inflammation illnesses. You all know what it’s like to not sleep for 4 years and to be treated like lepers and lunatics. But then, God took my despair and put us on the healing path and gave me the mission to create a support group for the 50 families in our town who had no one to help them. And so we did.

    Accidental Activism? No!

    We each have a season of activism in us, sometimes we need an intermission to rest, or temporarily sidelined with other “A” crises that enter our lives (Alzheimer’s, addictions, anger, adultery, alcoholism, etc), but we can pray for and encourage those on the front lines until we can rejoin them. And all the while we are daily advocating for our child’s future and demonstrating to a watching world our strength, grace, and faith that we shall overcome evil.

    We are all part of the plan to end the tyranny of greed and power that destroys our children.
    Know it, trust it, live it!

  11. goddess says:

    I honestly can’t even imagine that. If someone implied that I was a refrigerator mom I’d need to shove them in a meat locker. For good. You guys are the real heroes. THANK YOU….you have made it so easy for us–don’t think we dont know it and appreciate it. Our hope is to now prevent it from happening to others…just happy we have the tools to make it easier. xo

    • Come to the Beach says:

      Thank you, my dear. These days I help the new moms on a one-by-one basis, and the delight is that my recovering son helps me minister to these families! He entertains and comforts the children while I encourage and educate the moms. It was peaceful…..until my girl KimS pushed me to join TMR and here I am, on my second round of activism. What I still don’t understand is Why is the world so content to leave these children sick and on the shelf, allowing multitudes more to become sick, to lose a generation and more?

      The answer has to be greed. Autism is Big Business: many of the university programs and educators, medical practitioners, government agencies and social programs, beavioral therapies and treatment centers are dependent for their profits on a steady supply of sick kids, and they don’t want these children to get better! Their revenues, their practices, their careers would end if autism came to an end. We have an entire economy built around keeping kids sick! And let us not forget the Big Orgs that rake in millions “for autism” …..

      Ah, let me know how I can help you and the TMR moms. I will not make it to Chicago in May, but I will be following your efforts and praying for the walls to come tumbling down.

  12. Christine says:

    Yep, you are in fact an activist – and the best kind. With passion, determination, and smart ideas. You are making a huge difference, in ways you can’t even imagine or anticipate, and changing the world – bit by bit. I know you have the strength and balance to keep this all moving forward. So proud to be part of your movement, and happy to pass the mantle of “family activist” to you!

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