A Few Thoughts…

I haven’t written anything on this blog for an entire week, the longest I have gone without posting something since I began blogging over three years ago.  A combination of things kept me from my routine, the first being – Emma and I were away, traveling to a new place with food we do not usually eat, people, most of whom we did not know, sleeping on beds we weren’t use to.  Everything about our environment was different, but there was something else too.  Something I can’t completely explain because I haven’t figured it all out yet.  Something that was more than just a disruption to routine, something about identity and society and how the two intersect and influence each other, what that means and how that changes the way we live our lives.  These are all thoughts that are more like wisps of random words than fully formed structures I am able to describe.  I am in the midst of these words, loosely pieced together ideas; I am twirling among them, investigating, looking, feeling and trying to be still in my discomfort of not knowing or being able to define.

Em and I traveled to a place that was created, organized and for Autistic people.  I took Emma because I wanted her to experience being in a place where her neurology was in the majority.  I wanted her to meet others who are more like her than not.  Em has not commented on our time away other than to say she had fun.  I, however, have a great many thoughts and feelings about being in such a place.  And I suppose the thing I felt more than anything else was how much more alike we humans are no matter our specific neurology.  But there is always a danger in making such a statement.  I have been accused of “sugar-coating” autism.  I have been told my daughter must be “high functioning” because surely if she were like their child it would not be possible for me to have come to a place of not just acceptance, but celebration of all that makes her who she is.  Some people have written that by accepting I am giving up.  They equate acceptance with resignation and doing nothing.  Others have said that acceptance will not get my daughter and others like her the services needed, that the negative rhetoric is necessary.

People have written me that they want to hear about the hardship, the difficult times, the pain…  they wonder at my decision NOT to talk about that.  To all those who come to this blog hoping to hear about the gory details of parenting an Autistic child – better to move along, you aren’t going to find that here.  There are countless blogs that do that far better than I ever could, even if I wanted to.  I lived too many years of my life neck-deep in pain and all that was wrong with this planet and my life.  And by the way, I did that well before I had an Autistic child.  I am more than capable of seeing the world as a dark and miserable place.  I don’t need a great deal of encouragement to go there.  Perhaps one of the greatest gifts I have been given is that I was once in such tremendous pain and know how easy it is to live in a place that feeds off that misery.  I have no desire to return to that mindset.

I am interested in hope.  I am interested in both being the recipient of and the giver of hope.   Hope gives me energy.  I feel invigorated by it.  When my daughter types something I have never heard her communicate to me before I am filled with joy. When she says something I have never heard her say, I am filled with happiness.  When she performs a new song, in Greek, no less, I feel proud, I feel excitement, I feel the beauty of her voice fill my soul, I feel bliss.  When my daughter reads something and makes a comment about what she’s just read I am euphoric.  When she tries something new, I am cheering her on.  None of this erases the moments of pain.  None of this means everything is simple or easy or that there are never moments of sadness or difficulty.

I will and do write about my own challenges, not because of my children, but because of who I am.  Placing blame on others for my issues and challenges is not something that helps me change and it definitely does not make me feel any degree of happiness.  My best moments with my daughter are spent when I have no expectations and greet each moment with wonder and curiosity.

“Type three colors,” I said this morning.

“…Violet, slate blue and red,”  Emma typed.

I’m in awe.

Emma’s ever-changing “string”

Em's String

38 responses to “A Few Thoughts…

  1. I enjoy reading your positive and loving words. I am a “glass half full” person and don’t need help seeing the bad. But my heart is always filled with love after reading your posts. Thanks for changing my energy flow and pointing me in a better direction.

  2. good to see a post from you again, it did feel odd going a week without seeing one :). I can’t wait to hear all your thoughts about the past week as they begin to take form.

  3. Love this, I hope I’m able to attend next year with my kids – I know it was an experience well worth it. I wanted to let you know that I am ecstatic that you choose to share your hope, your joy and your faith in your family and also your advocacy efforts (It’s why I read your posts)! I agree with you, and have shared with you from the beginning, that I believe there’s enough negativity out there – and not just about autism. People who want the pain and misery can find it around every corner, but not with you, which is why I’m here. ❤

  4. Arianne, you are wise not to give in to the ups and downs our children experience and then focus on that. First and foremost, all children have ups and downs, but most important, by sharing the rough patches, we are also invading THEIR privacy and that isn’t fair to them.
    By focusing on hope and having this re-inforced by the various emergence of newness they express, is awesome. This instills in us as parents to push forward and get our kids into programs they need and places they need to go and help them get to the next level! We are their ONLY advocates…in my travels, I have experienced individuals who have family active in their lives, are the individuals who experience success and grow the most.
    There is enough sadness and pain expressed on the front page of every form of media in the world…staying positive even experiencing “off” days, is where to be.
    You and Rich are wonderful parents and both of your children will be successful and grow by the enrichment of your love and belief in them! Stay on the path you are on and hold onto HOPE and delete the negative!
    Hugs! Kendall

  5. Chou Chou Scantlin

    Welcome back! I am glad Emma had a good time, and it is not mine to judge on something I know nothing about, but I am so glad you are writing again, and know you will find the words you need. What you add, the joy and hope you choose, the bringing together, with understanding and love, is changing the conversation in such a positive way. You may not see it always, but you are doing much, much good!
    Just sending lots of hugs, lots and lots of love, and a bit of laughter, too, for I am so overjoyed to have connected to such a wonderful community of friends here, because of you loving writing.
    Life, at any moment, can turn horrible, profane, desperate, and tragic. Every moment we find of joy and beauty, every skill we acquire that adds to the good, just, and divine; these are to be celebrated. It is not candy coating. It is inspiring. It is necessary and makes the world better. You, Ariane, are adding to the good, bringing the conversation into the light. There is truth and reality in dark anger, and in bright hope. We choose. I cannot imagine choosing the darker side, but some do, and there seems to be a need for it. I will not, nor do you need to.
    So, I send you much love, as a happy, content, well meaning, ridiculously bumbling-through-life, comically flawed friend, who is, openly and with no agenda, an autistic who is rather adult.❤

    • Last night Em did a performance of “four songs”. She announced this to us beforehand, so that we would be prepared. She sang and at the end my mother turned to me and said, “she’s a younger version of Chou Chou!” And Richard and I laughed. I’ve never forgotten your lovely words suggesting we encourage her to perform and give her the space and time to do so, with wild cheering and applause. We do this regularly and she continues to grow musically!

  6. “My best moments with my daughter are spent when I have no expectations and greet each moment with wonder and curiosity.”
    Mine also!!! And with my son too!!! Though it took me decades to be open to this, I am so grateful— I could have missed it all.
    Grateful always to hear your heart. Thank you. D

  7. Thank you, and welcome back 🙂 ! I for one am happy you choose to focus on hope. I love reading about the beauty and joy you find in every day life, and your ability to pass it on to the rest of us.

    You and Emma, and your family are inspirations, and while every person’s journey is different (autistic, neuro-atypical or ‘normal’) your message of hope rings loud and clear in everything you write. I believe it takes talent to portray the good in the world when so much negativity surround us – and YOU have it 🙂

  8. Your blog is very inspiring and I believe that I understand how you feel, especially in relation to past behaviour and pain and a present filled with the wonder of learning about someone unique and gifted in a different way.

    My daughter has seen the banner for your blog and decided she wants to write a “Hope Book” too for her “sisters” (her dolls… she would shout at me for calling them mere dolls though). She always asks about Emma when she sees her picture here.

    Keep posting!! It’s always good to see uplifting words from an Autism parent. I don’t believe that constant negativity brings change. Sometimes disharmonious issues need to be addressed, but (I believe) It’s belief in what Autistic people CAN do that counts the most.

  9. ♥ Ahhhhhhh… Yes!!!
    ((Hugs)) and a Snoopy Dance of appreciation for your being in the world!
    *Hums + Wiggles about like Snoopy ♫♪♪♪ ♫♫ ♪♪

  10. I second the Snoopy dance. The world is indeed a better place with Ariane!

    Stick with what you know, write about what you love, and let those who want to be awash in negativity move on.

    Our daughters have very different diagnoses and skill levels, but it was you – YOU – who made me realize what I was doing that was so detrimental to my little girl. I’m a heard headed case, but I think completely differently now than I did a year ago. And that’s keeping in mind her new diagnosis, and new issues. I just take it as it comes. I try not to freak out so much. I learned that from YOU.

    So keep writing. Haters gonna hate, as they say. You have far more people who look forward to what you write every day than those who don’t. Trust me!

  11. I re-read that negative comments and this is what strikes me…they are made in fear. A deep down fear that maybe they way they are approaching things may not be the only way, and if others dare to do something different then they must put down others to make themselves feel more confident that they are “right.” They are also made in guilt. They type that comes when others are able to accept their child for who he or she is, but they are unable to for some reason.

    In the end this is your blog. Others should realize that if they are spending their time making negative comments on a personal blog, where a person’s sole agenda is to write from their viewpoint, then maybe they need to look inward at why they feel compelled to make the negative comments in the first place.

    • I think you are right.
      The post I wrote the other week about the blogger, was actually an entire blog post they’d written on their blog devoted to criticizing me! Talk about searching for topics… it was so unbelievable and mean spirited. They not only used my full name but also added a link to my blog. Not the sort of traffic I need or want…
      Most of the people who comment here are pretty fabulous!

  12. Diagnostic deficits do not describe the humanity of an autistic. Both are important for vastly different reasons. I applaud those who choose to figure out how to best support what’s hard rather than whine about it. I understand my autism is hard for you. It is often hard for me too. I do the best I can with supports in place and then live with what I’ve got each day. I love when people work with me and not on me. This is the body I have to live out my life from. It can be a wild ride. Some days are quite the challenge. Thank you so much Ariane for joining with me, being a friend and commrad as our paths cross in this life. When a culture of basic human acceptance surrounds me I am more likely to be able to access my best self – my best skills and abities, my best human connectedness, my own loveliness of essence – something innate to all human beings regardless how cooperative their outer packaging is in the moment. Many times my body betrays me so thank you to not attach the essence of my being to what my body shows and so much thank you for choosing not to whine about it. The not whining ushers forth a culture of human acceptance.

    • Judy – What a wonderful comment. I love this – ” I love when people work with me and not on me.” and also this, “When a culture of basic human acceptance surrounds me I am more likely to be able to access my best self” What a great reminder of the importance of accepting ourselves and each other so that all of us can better access our best selves.

  13. In the past 14 months, since I noticed/acknowledged a couple of “red flags” for ASD, I have at times been consumed by despair and fear. The internet offers vast amounts of information. . .and vast amounts of negativity, for those of us who are susceptible to it. Finding hope online is not easy. . .and I want you to know how *valued* and *important* it is. I found your blog about three weeks ago via Huffington Post and I have spent hours reading through chronologically, as your philosophy/voice connected for me and I wanted to understand more about Emma and your family’s journey.

    This May we received a diagnosis of PDD-NOS for our daughter (then 2.5) and we are still struggling to figure out what this means for our lives. Maybe my search terms were to blame, but my earlier readings did not recommend the voices of adult autistics, nor the concept of neuro-diversity, nor even really the simple truth that time will continue to bring changes of its own. All of these concepts are full of fresh perspective and hope and promise. And that is *exactly* what we need right now.

    Thank you.

  14. I love reading your blog. It gives me positive hope that one day all will see my son for what he is; a smart, loving, wonderful little boy 🙂

  15. Ariane, welcome back!

    Nick and I are anxious to hear more about your experiences there! Do write more when you can! ( or email us! )

    I love the essence of your blog and you restated it beautifully here!

    Each ray of hope lights a pathway.
    How bright it shines for us lies in our perception of it, driven by our own thoughts, leading to our own feelings, and how far we follow it is our own choice.

    Thank you and thank Emma for countless rays of hope, new thoughts, new feelings and pathways to lead us closer to one another and further toward acceptance and equality.


  16. You did not give up on Emma you just love her just the way she is there’s NOTHING wrong with that.

  17. This post distills the spicy essence of blossoming recognition. It is light filled fractal drop of understanding sparking to all your other posts. Beautiful. Thank you.

  18. THANK GOODNESS that you don’t write about the hardships! I’ve shed enough tears by reading those pages like wiki and books on Autism that made me feel my family had just been handed a life sentence of permanent and unescapable misery….what good did any of that do for my family? (just turned me into a useless emotional mess) You inspire me to be the best advocate for my children that I possibly can be, and what I have learnt from your blogs in just a few months (as my journey matured) has been more useful to my family that a dozen books and countless internet pages over the past 2 years. I have nothing but admiration and respect for you and yours, as I try to put my gratitude into words….Carly. X

  19. Carly – thank you so much for leaving this here for me. I cannot even say how much I appreciate your words. Thank you. Really. Just thank you.

  20. Ariane~ I recently saw a thread on Twitter that really turned into what I thought was a fairly ugly argument on the difference between high functioning and low functioning persons with autism. I don’t live or exist in the world that has either of those challenges and admittedly little true knowledge of the struggles. I am trying to educate myself simply to better understand what those challenges are for folks living with them. My impression though possibly naïve is that everyone’s struggle is relative to their own experience. I think each voice is important to the cause of raising awareness for your community as well as acceptance. I think each voice chooses what it needs to say based on what they face each day.

    I think the title of your blog alone, Emma’s HOPE Book speaks to your purpose. Your desire to celebrate the wins vs digging in to the darker times that I’m sure you face, speaks to who you are and how you approach your challenges. The argument that this somehow sugar coats the struggles to me just doesn’t seem fair. I think hope is crucial and I would guess that in the things you and Emma face, hope is often the food of life.

    Again, as someone who does not live in this world, it’s just a comment but I think that hope can raise awareness and cause change just as surely as painting vivid pictures of the darkness of the struggle.

    And I do believe that “violet, slate blue, and red” would be a wonderful title for a poem…

    • Andrea – thanks so much. Those arguments are raging around us all the time. The bottom line – are the high/low functioning labels helping my daughter? Do they help me help her? Do they help others help her? I have learned that the answer is a resounding NO!

      And I love the idea of a poem entitled Violet, Slate Blue and Red!

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