“Will She Be Okay?”

“Will she be okay?”  This was the question that went unanswered for the first nine years of my daughter’s life.  

“Will she be okay?” I asked every autism specialist, neurologist, pediatrician and anyone else who seemed vaguely knowledgable.  This question actually had almost nothing to do with the child I saw before me and everything to do with how I felt.  I so wanted reassurance.  I so wanted and needed someone to tell me she was going to be okay, whatever okay meant.  Whatever world “okay” occupied, I wanted to know, really know that my child was going to be embraced and fully in the “okay” of it all.  

“Will she be okay?”

Like the children’s story about the baby bird who’s fallen from its nest and asks all manner of creatures it meets “Are you my mother?” I desperately wanted someone to put their arm around me and say those seemingly magical and reassuring words – “Yes.  I promise.  She’s going to be just fine.”  But none did. So on I went, searching, trying every therapy, remedy, every crazy combination of vitamins, diets, homeopathy, naturopathy, healer, energy worker, cranial-sacral therapist, shaman, neurologist, developmental pediatrician, speech therapist, occupational therapist who held out the promise that all would be okay if only I did whatever it was they believed would make her “okay”. 

“Will she be okay?”  

When we finally ended our campaign to cure our daughter, our campaign to help her accelerated.  But this didn’t happen in a vacuum.  We had support.  And the support we were given came from other Autistic people. In retrospect, had I known my friend Ibby, I would not have asked “will she be okay?”  Had I met Tracy Thresher, Larry Bissonnette, Jamie Burke, Jennifer Seybert or any of the other people I’ve had the good fortune to physically meet, I would not have felt the need to ask repeatedly whether my daughter would be okay, because I would have known she already was.  That question would not have occurred to me to ask, because these people, many of whom do not speak or more often than not do not speak, or as in Ibby’s case speak, but when stressed, is unable to, are living their lives fully and they certainly know joy.  Each of them has grown up in a society that underestimated them.  All of them have been doubted and had to prove their intelligence over and over to those who are unwilling to see the evidence before them.   

“Will she be okay?”

We, as a society, must stop forcing people we deem different or less than to prove their worth.  We, as a society, must look inward and start asking ourselves, not “will my autistic child be okay?” but “what can we do to accommodate Autistic people so that all can flourish and be included?”

In the end, that’s all I really want for both my children.  I want them to feel a part of a society that supports them. 

“Will my child be okay?”

She IS okay.  Right now at this moment.  It’s up to the rest of us to recognize this.

Em singing “Clumsy” for Ibby and Emily last night

Em's performance 

31 responses to ““Will She Be Okay?”

  1. So true. Thank you, Ariane, for voicing so elegantly what many of us parents of Autistic kids are struggling to articulate.

  2. Oh, yes, yes, yes! I just can’t seem to say anything more than YES!

  3. She’s beautiful like her mama !

  4. neurodiversity is more than good its god. there is no gold standard brain just as there is no gold standard flower, race, or culture. emma is more than ok. i know her and know this to be true. az, this goes for you too. loving to pieces all the pieces b

    • (((Barb))) Thank you. You’re always included even when I don’t single you out, you’re implied, always, always one of the many, who’s made a difference, as one who makes it all “okay”. ❤

  5. Emma rocks! She is awesome and a great singer and cracks me up with hilarious jokes!

  6. Yes, Emma is okay, and fabulous! Your question is valid, though, as it is a question ALL mothers have a right to ask about all children. We never know what the future holds, and life can be hard, even for the strongest. It is up to good parents to believe in their children, and, in that belief, give their children every advantage by instilling a belief in themselves. Emma will lead Emmas unique life, in her own way, and deserves every chance at reaching her potential and every moment of happiness that can be gleaned for the present moment and all moments to come. This is what we all deserve, and this is all there is. You MUST believe, all good parents MUST believe, unconditionally, in the perfection and unlimited potential of their children, for only then will they they arm their children with that singular strength which will carry them through the struggles that predictably lie ahead.
    Ariane, you are doing even more, as we breathlessly watch. You are changing the mindset and helping lay a new path in the acceptance and understanding of all autistic people. So many wonderful people, like those you mentioned are! I have found okay, in my own little happy way, but it was my mother’s complete and utter belief in me that gave me the view that I have unlimited potential, and a view that struggles are simply a tool for growth, and something to embrace. I am sensitive. Some things are very hard in ways many cannot begin to understand. Let me laugh at those, and remember I am strong, and am…okay. Everybody, please be okay, be inspired, and know your strength. Thanks, Ariane and company. Talented lovely Emma has an outstanding entourage! ❤

    • Chou Chou – every time Em puts on that sequined dress I think of you. Every. Single. Time. She knew Ibby was coming to stay with us and ran into her room to put it on!! Yes. She’s more than okay and so are you. Thank you for being wonderful You! ❤❤❤

  7. I started reading your blog last summer, and it’s been obvious to me all along that Emma is, indeed, “going to be okay”. She’s far more than okay, in fact, and is going to do amazing things in her life. Of this I have no doubt.

    This is why I’ve had to stop coming here, Ariane. It’s just too hard. Seeing all the progress that Emma has made, while at the same time, getting Risa’s Rett diagnosis and seeing her getting worse every day – physically, behavoir wise – and knowing that in fact she is NOT going to get better and it’s ONLY going to get harder – I just can’t. Forgive me for not sticking around your blog, for I have learned so much.

    I promise to stay in touch, we can email and talk on the phone, but I just can’t come here anymore, Ariane. I’m so sorry.

    • (((Ang))) I so completely understand. I do. I would feel exactly the same way, Ang, I would.
      I am sending you love. Just lots and lots of love.

    • Angie, sending love your way! I have enjoyed your visits and comments, and also understand how you feel. Please be well, and know you are loved. I pray you will find much peace, strength, and moments of okay-ness in each day you have with your daughter. Peace of mind and grace in living to you, in each day to day moment, and the journey ahead ❤

  8. She’s happy, she’s loved, she has things she loves to do and hopes and dreams. Isn’t that pretty much as good as things can be? She’s okay.

  9. Because we now know what “okay” means. We really know, not what people tell us it means, not what our culture thinks it means … we know deep down inside what it means. ❤

  10. I just have to ask – which “Clumsy”, is it the one by Our Lady Peace? 🙂

    Interestingly, the question in topic is the one I have asked so many times – will I be okay? And perhaps, I am – or will even more become if I just stop asking that. :-p 😉

    • It’s nice to see you Petrii! I’m going to go out on a limb here – I hope that’s okay – to repeat something my friend Ibby said to me, “the more you can stop asking, the better you’ll feel.”

      Clumsy by Fergie. Em loves Fergie!!

      • That’s OK, and in a sense, exactly what I might be prodding. 😀 Would Ibby agree with a corollary, “the more you can let live, the better life will feel?” Don’t think I’ve heard Fergie, but there’s always Spotify!

      • Though I also have to think, curiosity in a positive mind frame is something I’ll be hard pressed to live without. Sometimes, pondering about life’s mysteries is also letting them go.

  11. Emma has an amazing singing voice! I can’t honestly say I was a fan of that song before I heard Emma sing it. 🙂

    • Emily – she just did the most amazing thing. She put on rap music, I don’t even know who the artist was and then sang the song Damage over it, matching the beat exactly. It was amazing and like layers of sound, almost harmony, but with a totally different song layered over this other unrelated song… unbelievable. Next time I’m going to record her.

      Loved having you over. Ib just left and we’re all feeling really sad!

      • Oh my goodness, she could be a mashup artist! Mixes like that are all over the internet, and I love them even when I don’t know or even like the individual songs. It’s a thing I wish I could do, but I just don’t have the musical senses.

        Do you know the artists Girl Talk or Stereo Bomb?

        I hope we all get to hang out with Ibby again sooner rather than later!

  12. Love that “We, as a society, must stop forcing people we deem different or less than to prove their worth” what you said reminds me of something I experienced in India this elderly gentleman asked me “Can you speak Malayalam?” to which I responded “Isn’t that what I’m speaking?” We all laughed

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