Dreams of a New World…

Moral dilemmas continue to plague…  I have never seen myself as one of those mothers who poured all of her competitive spirit into shamelessly promoting her child.  A kind of stage mom gone rogue, using her kid’s exuberant charm and/or talents to gain recognition from thousands of strangers.  A kind of warped narcissistic mirror of neediness, an adult version of a child’s plea, Look at me!  Look at me!  Yet, in light of recent events with parents blogging about their children, posting photos, using their real names, telling excruciatingly personal stories, many not kind or endearing, while supposedly illuminating their child’s and their struggles for all the world to read, judge and comment on as a way to advocate for better services, it’s impossible for me not to reflect on what exactly am I doing here and how is what I’m doing so dissimilar?

I began this blog as a record, of what I hoped and expected would be, Em’s progress after a series of radical stem cell treatments.  I didn’t think or expect this would be read by anyone other than family and friends and those who might be thinking of embarking on similar radical treatments to “cure” their Autistic child.  At the time, April 2010, I wasn’t thinking ahead, I didn’t consider the broader implications, I thought of this space, this blank page, as a place I could come to record what I saw and hoped for, while believing that whatever it was, it would be “miraculous”.

What I didn’t know, couldn’t have known, was that the miracle that occurred ended up having nothing to do with stem cell treatments or any other treatment or therapy.  The miracle has been my own evolution, a kind of 180 degree turn from where I once was in my thinking, in my attitude and in my expectations about autism and what it means to be autistic.  And while there is no doubt that my daughter continues to make wonderful, steady progress, it is not as the result of various remedies and treatments we embarked upon, but rather as a direct result of NOT engaging in those various so-called “therapies”.   What harm we may have done to our daughter because of those treatments, bio-medical and otherwise, is something we will never know, but must live with the uncertainty for the rest of our lives.  

So why write about all of this?  Does the world really need another parent blog about their kid?  Probably not.  However, and here is where things get muddy for me, every time I think about ending this blog, every time I think I can’t keep doing this, it’s not right, it’s not fair to my daughter, it’s not for me to write about her, it’s not for me to broadcast what she says and/or does, it’s not for me to post photos of her, these are not my truths, they are hers to tell if and when she can, every time I think along these lines I wonder if I would have done things differently had I read a blog of someone’s journey that was similar to mine?  Would I have still gone to such drastic lengths?

Is it possible a child’s life might be made just a little easier because of something I write or say here?  Is that just ridiculously grandiose to even think in these terms?  And yet, I have to go back to my own history of having an eating disorder for more than 2o years and the help I was given from hearing others candid, uncensored stories of hope and recovery.  Those stories that resonated were the ones I clung to so desperately during those first painful and terrifying years as I tried to change my life.  Years when making it through a single day without binging and puking was considered a “good” day.  I needed those stories.  Had those people NOT told them I doubt very much I would have gotten through.  I don’t mean that to sound self-congratulatory, it’s actually the opposite, I could not have gotten to where I am without all those people, all those stories, all those people who reached out to me and said, “it’s okay, you can do this.  Here’s my number, give me a call if you’re in trouble.”  I learned to lean on people, I learned that I didn’t have all the answers, I learned that there were more things I couldn’t control than I could.  I learned what it meant to accept what is, the here and now.  I learned about being present and that I hold my breath when I’m fearful and I learned that I wasn’t alone.

So in the end, this blog is no longer a document of “my daughter’s journey through a childhood of autism” as I once described it.  This blog is a document of my journey as a parent and as a human being and how autism has changed my views.  It is a far more beautiful and complex world than I ever imagined or dreamed possible.  It is a world that is evolving, far too slowly for my taste, but I have seen glimmers of what is possible.  A world where we do not segregate, where ALL people are treated as equals, not just as an idea, but in reality, a world where everyone is fortunate enough to have an Autistic person in their life.  A world where autism is no longer feared, but is embraced.

Sunset

50 responses to “Dreams of a New World…

  1. I swear you’re in my head again. Almost awkwardly so.

    Tough questions indeed, and ones that I think we must continually ask ourselves and one another. (And ones to which I find our current answers eerily similar.)

    Merry Christmas to you all.

  2. ((Ariane)) I appreciate you! My journey may be slightly different but I have had very similar thoughts about sharing my experiences and stories about H.
    I am always questioning – ‘What would he feel if he read this as an adult?? He reads it now and likes it… but will that change?’ There are tonnes of wonderful and hilarious things that I do not share – they are too personal… but still I wonder. Thank you for this post and for your fabulous writing and thinking and advocacy. Thank you for being there beside me (albeit on opposite coasts and in different countries) as we work to make things different – better – for those who experience and process the world differently!!
    I send you hearts and wishes of peace for Christmas, my friend! ♥
    Leah

  3. Hello Ariane! I just want to let you know that I now direct all of the parents I work with toward your blog. It’s become such an effective way for me to advocate for Neurodiversity to my families. Without having children of my own, unfortunately sometimes I think I’m seen as a bit of an “idealist,” but your perspective really helps to diminish that misconception. Thank you my friend!! ~CJ

  4. Chou Chou Scantlin

    Merry Christmas to all of you!
    Again, you move the conversation forward in a most positive way:) This blog has not been about Emma for a long time. I see Emma as the inspiration, not only for your journey, but a sweet muse for us all. You bring her no harm, and treat her, and us, with the upmost respect. The actions of one does make a difference, and your writing is making a big difference to those of us seeking to be understood and accepted for who we honestly are. You do this, Ariane, for your many friends. You bring us on your journey with you, and a lovely journey it is. So many of those on the spectrum are so used to traveling their journey alone, and, through you respect, kindness, and compassion, you make us feel happy and safe and not alone. Please do not compare yourself to what others are doing. Comtinue to do what you know is right for you, for Emma, and for all the wonderful friends who follow this blog. 🎄🎄🎄

  5. I don’t blog but I do post comments on the blogs I read. My son is 15 and I have always accepted his diagnosis as just being part of who he is. Reading yours and other parents blogs helps me understand him a little bit more. I especially love reading the blogs of those on the spectrum. Sometimes I get confirmation I’m doing the right thing. Sometimes I get ideas on how to help him manage situations. Mostly I get comfort that that autism is ok with lots of people all around the world. I’ll look forward to reading about you and your family and even the cat as long as you want to share with us. Thank you.

  6. I could not read this on my Monday hike, as is usual. It pelted it down with rain. Chou Chou speaks my sentiments perfectly. You are on a journey, and I enjoy reading about it. You give me hope, courage, and happiness.
    I had just attended the most ghastly Team Meeting I’ve ever attended: manager and carers seemed to derive great pleasure in ridiculing our clients. And they wonder why incidents occur . . . . Please keep spreading your wings–i too am directing people to your blog.
    You are helping my family. I spent long hours in discussion with my brother. (One of the reasons I had to miss Chou Chou’s show).
    We grew up unknowing. And will stay relatively unknown. I can only say . . . Thank You, and your Family for sharing.

  7. I am greatful to have your blog. If you quit I would not blame but only miss you. Your words help me and keep me thinking the way I want to be thinking. I love reading it but I do not share my story with anyone on line but a few pieces here and there. Please are not kind and I am not strong enough to open up. If you go. Thank you for your impact and thoughts, if you stay I will continue to enjoy the ride on your journey. I have become fond of your family and your way of thinking 🙂 Merry Christmas. I hope you have a wonderful wonderful day.

  8. Ariane, keep on blogging. The world would be a lesser place without your wisdom and insights. When Emma is older she will understand what you write as coming from your heart and filled with love.
    Not only your life has turned around but also mine, just to disprove the adage “You can’t teach an old dog new tricks” but in my case you certainly have. Emma has done several leaps forward in communication. This morning she and I had our first real conversation ever! I am amazed. And it is a miracle, not just for her, but I have now learned a little something about how to talk with her.
    It’s not the students who need learning as much as the teacher. It’s with the teacher that it starts, and if it starts with understanding and love, then it’s sure to be a winner!
    The Old Dog aka Granma/Mom

  9. Write on, Ariane, write on!

    Your blog is validation, encouragement, and discovery. Some writers promote their personalities and agendas masked in the buzz of the day. While the media may shine a bright light upon them, the light is harsh.
    The selfish and dishonest eventually reveal themselves.

    You are special. You relate a deeply personal evolution, nourishing and giving hope to others. Society is grateful, but the process is slow and lacks glamour.

    Your daughter is a part of this process. She is essential to your journey and to those who travel with you. I adore your honesty and applaud you for your advocacy. I’m getting lost in what I’m trying to say–but I support you. I value you.

    Love to you and your family,
    Lori D.

  10. you are an inspiration 🙂 yes, even from the other end of the world!

    zack and i wouldn’t be where we are today if it wasn’t for blogs like this…..

    • Carol,
      Thank you so much. Thank you for following this crazy journey of mine and for all your wonderful comments. I have appreciated each and everyone of them and have really enjoyed getting to hear about you and your wonderful son!

  11. your insights and ahas about facilitated communication are mind blowing. Your blog advances the world’s understanding of how autistic ppl perceive and what they are capable of. Thank you for every word. And picture.

  12. I really enjoy your blog Ariane, your child is very similar to mine and so I find your accounts of your journey very interesting. Your posts on topics are often thought provoking too. Keep it up, I enjoy seeing an ‘Emmas Hope Book’ email in my inbox 🙂

  13. Ariane, I’ve never commented before but I’ve been reading your blog for a while and I want to let you know how much I love it. My 4-year-old son doesn’t have a diagnosis yet, but reading your posts has helped me clarify my thoughts and feelings about his likely autism, in a really positive way.

  14. Your blog is helping me and really appreciate your posts, but I understand your feelings. I was questioning myself too. I think I will keep going, but I will always try to be respectful of my daughter and her individuality.

  15. ok Ariane, my sweet friend……ask your Emma! You know you can now! And PS…ask her about all the treatments she had. She will tell you now how she feels about them. She can.
    I asked my Emma, and I learned a lot, I mean a lot.
    Now my opinion is simple…I believe the connections you have weaved amongst so many people, autistic, nt, parent, friend, are too important for you to give up now. I believe you need the blog as much as those of us who read and comment need it.

    • Paige! You must give your dear, sweet Emma a special hug for me. Sending you both love and thank you for this comment. I cannot tell you how much I appreciate you and Emma in my life. Really. You both have made my life so much better.

  16. I’m going to make a comment here before reading the others, making a bet with myself that I’m going to read some eerily similar statements above (minus the personal relationship/active bystander stuff). Ok, here goes:

    You’re too hard on yourself Ariane. You have always been too hard on yourself, and if I had to place a wager, I’m guessing that self-criticalness might evolve slightly in the years to come. Or not. And yet, it’s that very quality that serves you very well in another respect. Because you won’t settle for anything less than the very best from yourself–you keep pushing, asking questions of yourself and others, indefatigably striving for maximum-momosity and wife-awesomenality, succeeding so often in everyone else’s eyes–your own…not so much.

    As you say, you have undergone an incredible shift in perspective that has changed all our lives–only for the better. So keep doing exactly what you’re doing. Your voice is needed. It is important. If only a handful of people are helped as a result of your too-brutal honesty, the world will be a better place for all of us. You have become an activist now, with an agenda very unlike those of mainstream organizations committed to curing autism, or helping autistic people without asking their advice and hearing their voices. Keep rockin’ m’dear and rock the whole world!

    • Richard too many thoughts and feelings to express here… thank you for being the man I met on that snowy Christmas day almost a decade and a half ago. I will say everything else to you in person… 💕

  17. “Is it possible a child’s life might be made just a little easier because of something I write or say here?” — Yes, my child has, because of what I have learned from you and about you as a parent.

    I think these stories have always been “our” stories, the way we grow, how we see and feel — more than our children. It is impossible to tell our stories without our children, when the source of our growth and inspiration is our children.

    Thus I too, have decided to leave my blog online, knowing that at this point, it serves a purpose that I wanted it to serve when I started the blog: I was looking for a particular perspective, and, not being able to find it, chose to contribute that missing perspective I wished I had.

    You have honored your daughter and family wonderfully through the evolution of this blog, by preserving your voice and keeping it authentic and truthful. This is all we can do.

  18. Oh Arianne, you have a beautiful heart and your words and thoughts are so eloquently voiced. With our “treasured” children, we are blessed each day, even on the rough days, because we are taught something new, something valued that re-grounds our foundation or builds another layer we must have to move ahead.
    You are correct with your struggles between being open and privacy. When asked very personal questions that Jenn feels invasive, she will politely share she does not want to answer them. Emma will come to this also. When our children are younger, we as parents, want to reach out and help our fellow parents what has worked, didn’t work, how they mastered this or that, and our feelings. Now, being older, Jenn has taken this over for me. . I’m grateful.
    Thank you for sharing! Kendall

  19. What you have written has absolutely helped make my daughter’ life easier, in that from your words I gain confidence in trusting my own instincts. From your words I know I am not the only one who feels blessed by both of my unique kids, and marvels at their beauty every day. So please, yes, keep going. All parents need to hear your voice. Thanks for all you do!

  20. Merry Christmas. I miss you. Don’t you dare stop writing. It’s not your job to be quiet. Love, Ib.

  21. Merry Christmas to you and your family from a lurker who thinks you are a remarkable and inspirational woman!

  22. I love your blog, please continue. As a parent with a 3 year old with Autism this blog gives me hope. I have spent the last 6 months reading everything I can on autism to try and help my daughter. All that has done for me is make me feel even more lost. Autism affects each person totally differently and it is hard to take definitions from a book and try to relate them to a child. I have had no previous experience with Autism and have had no idea what to expect or what lays ahead. Your blog shows the actually daily impact that Autism has on Emma and your family – no book can do that. There are so many things that I have read on your blog that have helped me understand my daughter better. So many things my daughter does that I thought were odd or quirky – now that I see Emma does/did the same and it has helped me understand why.

    I follow in your footsteps – and Emma gives ME hope!

  23. I too want to live in a world where everybody is treated equal having Cerebral Palsy I know that some people think different is less than sometimes I roll into a room and people don’t even make eye contact words cannot describe how much that hurts me I try not to take it personally but at the end of the day i’m only human.

    • Nisha – I understand. My father spent the last decade of his life in a wheel chair. He reported having similar experiences of being ignored or people speaking to my mother or whoever was with him rather than to him as though he were cognitively impaired as well as physically.

  24. Hmm you ask an interesting question. As long as you are writing about advocacy and your own journey than no. It’s a different audience you are writing to help parents instead of giving advice for people with autism. In addition, you write so elegantly and have such a wide circulation, that you do so much for advocacy. I mean I write about my own experiences with Aspergers but since I don’t have as high of a circulation, I am unable to do as much for advocacy.

    • From what I see, you are doing a great deal! I figure the best I can do is honestly describe my experience with all of this. One day my daughter may be able to advocate for herself and will choose to, in which case I will be cheering her on and supporting her every step of the way. Until that day I can encourage and cheer those who are Autistic and do all that I can to support them in their self-advocacy.

  25. I’ve only recently begun to follow your blog. I am immensely thankful for your insight and openness – you’ve allowed me to see that I’m not crazy; and that in fact many of my actions or reactions to my son diagnosis are “normal” responses to the situation. So Thank you.

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