my story

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A conversation I would not have believed possible such a short time ago.

Impossible … isn’t.

June, 2006 …

I push my back into the leather car seat. Harder, then harder still. I’m desperately seeking resistance, solidity, anything that will somehow hold me in, tether me to the earth, transform the overwhelming emotion I’m feeling into something physical, something upon which I can push back. Something, anything that will keep me from drowning in this sea of unanswerable questions.

The doctor’s words made no sense. Autism. She said my baby girl had Autistic Disorder. Also known as Classic Autism. I roll the word around in my mouth – aw-tiz-um.

I am nauseous.

I look at Luau. He’s as lost as I am. I try to reach for him, but my body doesn’t move.

We don’t know yet.

We don’t know that autism isn’t a death sentence. We don’t know that half of what the doctor thinks she knows about it, and spreads as unassailable gospel, is complete and utter bullshit.

We just don’t know.

“She’ll likely live a solitary life,” she said.

“She’ll prefer to be alone,” she said.

My daughter is three. And yet somehow I know. Somehow, by the grace of God, I know that a white lab coat and a Harvard degree don’t add up to knowing my child. They just don’t. And the child that she just described is not mine.

Right then and there, just moments ago, in her tiny office on that awful leather couch, the seeds of defiant advocacy were planted in the soft and fertile ground of a mother’s terror and desperation. I don’t know yet that they are there, but I will soon enough.

Because I know my girl. I know that she doesn’t have the tools to interact with us in a way that we can understand; I know that our instinctive language and our experience of the world are different from hers, but I’ll be damned if either of those means that, at age three, we can write off her desire to engage with us or anyone else.

No.

Just no.

We came here for help. This isn’t help. This is finding doors ajar and slamming them closed. I won’t. I can’t.

We nearly ran out of that office, gasping for air.

And now here we sit in the parking lot, the gorgeous day mocking this all-encompassing pain. Because we don’t know yet. We don’t know that there will be joy. We don’t know that there will be laughter. We don’t know that as Brooke learns our language, we will learn hers and ultimately, we will create a third beautiful language that is all our family’s own. We don’t know that Brooke will be gloriously Brooke – a differently brilliant, funny, generous, uplifting soul who will delight in nothing more than the company of those whom she loves, and who will love us with an intensity that will renew our faith in God, ourselves and each other.

We don’t know yet.

But I do know something.

Just one thing.

The only thing I manage to say out loud.

“This will make us better people. All of us. You, me, Brooke, Katie. I don’t know how; I just know that it will.”

I don’t know why I was so certain, but at a time when nothing in the world felt knowable, I held to that one thing. That autism, if that’s really what this was, would make us all better.

I had no idea how prophetic those words would turn out to be.

Knowledge is power. Knowledge of one’s self is the greatest power of all. The journey to understanding my daughters’ (yes, both of their) experiences of the world from the inside out has been the most rewarding trip I’ve ever taken. Along the way, my understanding and appreciation of the entire spectrum of humanity in all of its gorgeous, painful, messy glory has evolved into the most wondrous gift imaginable.

I’ve been humbled and I’ve been lifted. I’ve been hopeless and I’ve been exultant. I’ve struggled when my children were in pain and I’ve celebrated the tiniest bits of incremental progress with the fervor of an evangelical preacher in witness to miracles on high.

I’ve learned about myself as I’ve learned about my children. I’ve discovered my limits and I’ve discovered that when it really matters, there are no limits. I’ve seen the value in – and felt the intense highs and lows of – a life lived unfiltered.

I’ve kicked pretense to the curb.

I’ve amassed an incredible group of friends, many of whom I never would have gotten to know had I not learned how to slow down. listen with my heart and learn their stories. My life, and my children’s lives are far richer for their presence.

I’ve become … better.

My children astonish me every day.

I am and will forever be grateful to them.

Because it is by following their lead that I have found my way.

I am a mother.

Diary is my story.

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Photo by Connerton Photography, all rights reserved.

In other words, mitts off my pic, please.

23 thoughts on “my story

  1. I wonder. Do those professionals, those white coats, even know what kind of impact they can have on families who aren’t as resilient and determined and stubborn as yours? It makes me so angry.

    But you. You get it. And Brooke gets it. She said so.

    • It keeps me up at night. And is a big part of why I write, and speak … and try to shine a light on adult autistics whose lives are rich and full and beautiful. That’s why.

  2. And this is why I love your Diary!! I found you when I was desperate to believe there could be more….. And My boy has proven there is…way, way, waaaaaaay more to his story……but when I had yet to see it, you gave me hope!! And sometimes that’s the greatest gift there is!! As always, thank you!

  3. I’m crying like a baby because you describe what I felt when we first received his diagnosis. I resented them for writing him off. I refused to believe that was it for him at 3. So glad I haven’t bought into their bullshit and never will. My son is an angel that has turned this old-control freak woman into a better and stronger woman. I’m not sure if anything else would have. My son made me better. Love your diary. You’re an amazing woman!

  4. I love this post, but I especially love this: “ultimately, we will create a third beautiful language that is all our family’s own.” Because I love the way our own family “talks” to each other. I am constantly amazed by the way my three children, each with their own brand of autism and their own unique language interact so seemlessly with each other. And I know I would never get to experience that gift without this journey. And it’s beautiful. And it does change us and we are better for it. There are so many gifts on this path, and you and this community are part of that. xoxo

  5. I understand completely, as you have made me who I am today. You did truly lead me and I am richer for it. I always feel blessed to have you as my daughter and I always will.
    Dad

  6. And I am SOOOOO thankful that you chose to put your journey out there for us to help us on OUR journies! When my son was diagnosed at 4, I wasn’t entirely surprised as it was in other branches of our family. And thanks to Temple Grandin, I was aware that Rain Man wasn’t the “real” face of autism. But finding your blog, other parent blogs, the blogs of autistic adults, and Loud Hands has opened my eyes, my brain, my heart in ways I hadn’t expected. I think it’s made me a better parent, FORCING me to look at the world from my child’s perspetive, forcing me to look beyond my NT language and thinking.

    We’ve been lucky in that the school district(s) support attitude has been very strength/skills based and has been respectful of our child and us.

    I agree with Autisticook that clinicians need training to understand the fluidity of autism, and how individual it is. False hope doesn’t help, but false resignation doesn’t help either. I don’t know if it’s possible to help change that narrative from the inside out, but I’m seriously considering it.

  7. Thank you for sharing this. We are possibly on the way to a diagnosis of ” a-typical Autism Spectrum Disorder ” for my daughter who will be three in January. I refuse to believe that her goals, desires, and quality of life will be compromised by this. Your blog inspires me everyday day. Thank you for allowing me to peek into your world.

  8. Thank you so much for all that you share. I have two on the spectrum, 7 and 5, and I went through the clinical bad news meeting twice…but they are unfolding and growing and they are a blessing. It’s so encouraging to see where you as a family are at, a few steps ahead of us.

  9. Pingback: Waiting for Help… | Manitoba Families for Floortime

  10. Here is what I could not wrestle into words last night. That single conversation with Brooke is perfection. It was a gift. It stands alone as that. But, of course it happened because it doesn’t stand alone and it wasn’t just one conversation. It happened because you guys have been saying it, showing it, living it, breathing it in everything you do. For years. The gift giving goes both ways.

    And this morning you bring me a needed reminder of so many times when this life has brought me to my knees and felt like it was damn near breaking me only to find it has just broken me open and allowed me to see and feel all the things I never would have before. We are, all of us, growing, changing, teaching, learning, in this together. These are our gifts.

  11. Bless your heart, my daughter has worked with children diagnosed within the spectrum… it is a loving challenge you face and I know that there will be highs and lows but all the time there will be family, love and a foundation that will give your child the freedom to live a full life. my thoughts are with you, DAF

  12. This. This is Diary. And this is why we all follow and learn and love and pray and celebrate along with you.

    I found you in 2011 when you were five years, or light years, ahead of me on this journey of growth. I read Welcome to the Club and kept on reading. I had to jog to catch up with you.

    I’m still eating your dust. Learning. Evolving. But you’re close enough that I can read the numbers in your back, and you’ve added accepting, embracing and celebrating to my own family’s experience.

    Thankful this is Diary.

  13. As always, when you write about these heart-stopping, life-changing topics, you just nail it. I feel like I’m “better” too, and I don’t think I’d be the same person if I hadn’t gone through all we have in the last ten years. You write a beautiful story, feel lucky to have found it.

  14. My daughter is three. I’ve been following your Facebook posts longingly. This is one of the most encouraging things I’ve read so far. Thank you.

  15. Your story, your evolution. I’m evolving right along side of you. Keep writing and sharing your story mama. Your words are powerful. xo

  16. My son was diagnosed at 3. I was given no hope for him and they even hinted at intitutionalizing him. At 3 they should have been ashamed. They made me so angry, I threw everything out that they said. Now at 10 he is funny, loving, bright and so much more than they could have ever guessed. Has it been easy? No, but it has been more worth it than anyone could ever know. DO NOT EVER GIVE UP. The journey is worth every step.

  17. I really like how you have taken what many would see as a disadvantage and have turned it into a great gift to your life. I am currently in school, studying to be an elementary school teacher, so I have learned a great deal on how to accommodate the needs of children with autism. Their learning style and life style is different than most, but that does not mean their way is bad. I have seen so many students with autism thrive and succeed into prestigious college students and working adults. Many see autism as a disadvantage, and fail to see all the advantages people with autism have. They are intelligent in so many different ways that help them accomplish things the average student never could. I am glad that as a mother you have recognized all of the great things Brooke will be able to accomplish.

  18. Pingback: Waiting for Help…

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