When the Words Don’t Match

The other night Em woke up at around 2:00AM crying.  She kept saying the same words over and over.  It was a kind of script, about an indoor playground that I used to take both children to when they were toddlers.  It is a playground that has been closed for more than six years.  “Mommy has to look.  Daddy has to find new Sydney playground.  The tickets are broken.  Mommy has to fix it.  Oh.  You want to go to new Sydney playground!”

Do not try to translate this.  Lean into the emotion, what is she telling you?  Forget the actual words, the individual words are less important, it’s the emotion, it’s the intent… 

This is what I’ve been taught.  I’ve paraphrased the exact words my friend Ibby actually used, but it captures the general idea of what she has reminded me of more than once.  It’s an important concept and one that I didn’t readily understand at first.  In fact our initial conversation went something like this –

Ibby:  Do you speak another language?

Me:  What?  No.  I barely speak English.  Do I need to learn another language?  If you tell me I need to learn Russian to help me understand, I’m on it.

Ibby:  (I imagine Ibby took a deep, calming breath before continuing)  No.  You do not need to learn Russian.  But you need to feel the words instead of trying to do a word for word translation.

Me:  Feel the words?  Mind began to race, a panicky feeling overtook my body. I don’t know what that means!  What does that mean?

And so Ibby patiently tried to explain that by getting lost in the exact meaning of the words I was missing the emotions being expressed.

With this in mind, I went back to Emma’s bedroom with her.  Very distressed, she continued to repeat the script and then suddenly veered off to an unrelated, yet another, unattainable, desire.  “I want to go to Martha’s Vineyard.  Not binyard, v, v, v, vineyard.  Mommy I want to go to Martha’s Vineyard.  No baby.  We can’t go to Martha’s Vineyard, it’s too cold.  I want to go to Martha’s Vineyard.”

As I sat with her listening, I tried to be present, neither lying to her nor adding to her anxiety, just being present and as I did this I felt a flood of recognition.  I realized I do a version of this too, only I call it “spiraling out”.  It happens at odd times, but being tired makes it harder to cope with.  When I think about how I spiral out an image of a pin ball machine comes to mind.  My thoughts are the little metal ball careening around hitting one side, ricocheting off the little bouncy things that make noise while the lights flicker, before shooting off in another direction.  Nothing anyone says helps me.  In fact, often well-intentioned people will make it much, much worse, because my mind is literally looking for things to think about that will create more anxiety.  The only thing that has ever helped me when I get this way is a calm, loving voice gently nudging me down a different path.  It has to be authentic and very, very loving and very, very calm or I become suspicious and even angry.  With this thought in mind I gently said to Em, “Is it okay if I tell you something?”  She nodded her head.

“I get upset too, Em.  Just like you are right now.  And when I do I have thoughts that I can’t stop going around around in my head.”

She sat up and looked directly into my eyes.  “Sometimes when I feel stressed and tired I can’t make the thoughts go away.  Sometimes the same thoughts just keep repeating in my head and I can’t get rid of them.  Daddy calls it spiraling out.  But you know what?  It’s going to be okay.  I’m going to stay with you.  It’s going to be okay.  I promise.  Try to breathe.  Here breathe with me.”  We inhaled together and then exhaled.  “Feel the cool air on your face and the warmth of the blanket on your body.”  I continued in this way, talking to her softly, trying to guide her, trying to make her aware of the present.  These are the things that help me when I’m agitated and feeling overwhelmed and eventually she rested her head on me, leaning her body into me as I spoke to her in a soft voice.

It was during those early morning hours with the two of us sitting together while everyone around us slept that I felt a surge of understanding.  When I get lost in the words that fill my head and when the words don’t match up with the emotions it feels confusing and I become perseverative and spiral out.  I see this now.  In the past I’ve called it anxiety.  I’ve said I’m overwhelmed and tired.  These are good words to describe what I’m feeling, but a more accurate explanation is that when I become fixated on specific thoughts, in my case they are often in the form of fears, I can become so lost in the specifics I lose sight of the emotions.  This has happened my whole life, only it took my daughter to get me to make the connection.  We are not so different, my daughter and I.

An image that calms me – The Manhattan Skyline taken while walking to my studio the other morning

Manhattan Skyline

37 responses to “When the Words Don’t Match

  1. Oh “the voice”. How it does speak to us when we are tired and vulnerable and it usually says the worst of things and what a wonderful gift it will be to Emma to learn to recognize its folly early and know how to tune it out and shut it up! Bravo Ariane for a tender and teachable middle of the night moment. I am pretty sure I can feel the love that flowed through you to Emma as you made the connection of what was happening and you were able to help her through a troubling time. I imagine it to be what I call magic! 🙂

  2. That is beautiful. That’s the kind of love that starts inside your soul and grows so big it flows out of your fingers and toes like a bright, warm light. You do right by Emma. Much love to you both and to Ibby who seems to know how to put these things in a way that makes sense. She’s a smart cookie.

  3. the sounds and movement of color …

  4. What a wonderfully, thoughtful and mindful post. Feel the words and lean into the emotions. This is very good advice in managing my own spiraling out as well as that of my children. Thanks for sharing this.

  5. Sometimes with NTs words don’t help either, but just being there, at their side does. When my father died no amount of words were helpful such as: “he was in pain, now he’s not”; “he’s in heaven looking down on you”; “it was time for him to go”..I know those friends were trying to be comforting, but I just kept thinking “what a bunch of crap!”; “why don’t you just shut up and be here?” Why do people always try to explain away fear? sorrow? loneliness? a sense of loss?

    Love does everything. It fills silence, it comforts, it calms, it surrounds you and hugs you, it keeps you warm. There is never enough of it in the world, so I am sending waves of love right now across the distances that separate us, across the mountains, across the plains…to you and to Emma….and to everyone whom it might touch along the way….

    Mom/Granma

    • Granma Paula: What you said, “why don’t you just shut up and be here?” is good! It reminds me of a passage from the Old Testament. I’m not Jewish/Christian, but I really like the passage. I think it’s a really good example of how to comfort someone in grief or distress (although the men later undid that good by becoming judgmental and lecturing. But we’ll just pretend that part didn’t happen!)

      It’s this:

      “Now when Job’s three friends heard of all this evil that was come upon him, they came every one from his own place; Eliphaz the Temanite, and Bildad the Shuhite, and Zophar the Naamathite: for they had made an appointment together to come to mourn with him and to comfort him. And when they lifted up their eyes afar off, and knew him not, they lifted up their voice, and wept; and they rent every one his mantle, and sprinkled dust upon their heads toward heaven. So they sat down with him upon the ground seven days and seven nights, and none spake a word unto him: for they saw that his grief was very great.” – Job 2:11-13

      That’s really something, right? They came to Job and they knew that the normal, empty words said at funerals were just not sufficient so they leaned into his emotions and sat with him, silently, for en entire WEEK! They just “shut up and were there.”

      That’s what you made me think of just now, Granma Paula.

      And that’s what Ariane’s post made me think of. Sometimes there are no words and what’s most needed is to just sit down with someone upon the ground and be there for them.

      • Oh unstrange mind you have no idea how appropriate this is. My mother has taught the bible for decades… I will let her tell you, but her “teachings” are often seen as somewhat unconventional as she aligns herself as neither wholly “Christian” nor with any other religious label. I believe the words “spiritual” and a “seeker” fit best.

    • Feeling all your love and more Mom, thank you for showing me how.

  6. Oh, Ariane, I love your Mom’s honesty. Paula, I have thought those same thoughts when someone I loved passed away or when someone was trying to sympathize about Kim’s disability or seizures. Now, I see where you get your honesty, Ariane. I can so relate to your story here. Thanks for sharing.. Especially at night when I am trying to sleep, I have these random thoughts and sometimes fears going on in my head. I have found that writing them down will often help me put them aside so I can then go to sleep. Then, the next morning when I am refreshed I can then decide whether these thoughts are relevant and something I need to deal with. or not. Perhaps, as you get better typing together, you can get Emma to type out what she is thinking and/or fearful of when something like this happens. It often helps Kim to type out her thoughts and post on Facebook or a blog. Last week, I had these fears come up as Kim was having seizures every hour on the hour. I was afraid we were going to end up in the hospital as we had many times before from 2005 to 2010. I kept praying and crying out to God for these seizures to stop. I finally got the revelation that maybe Kim was having fears as well so I turned on the light and read her promises of healing and peace from the Bible. She and I then were able to calm down and fall back to sleep. On a good note, I took Kim back to the doctor on Tuesday and turns out she had become extremely dehyrdrated due to her recent illness, the antibiotic she was put on, and seizures. We spent 6 hours in the ER for 1000 ml of iv saline and the seizures have abated and Kim is gaining her strength back and doing better! So no hospital stay this time! I love those kinds of answers to prayer.

  7. This really touched me, and my life, and Granma’s comments made it even more relevant. Thank you again for writing this blog.

  8. *Crying with joy for you two*

  9. This got me thinking about all of the different ways in which I use words. Sometimes I speak to feel the words in my mouth or to hear the sound of them or because they simply escape as I’m rolling them around in my mind. Ibby is so wise and your description of how you put her advice into practice is so joyful to share in.

  10. Chou Chou Scantlin

    First, Marilyn, I am so glad Kim is okay! Everyone’s comments are so beautiful. This is such an important post! Love, once again, trumps all…and Ibby sure knows her stuff! Ariane, you continue to astound in so many ways:)
    My time yesterday and today is taken up with contracts and scheduling musician, which is so hard for me. By bedtime I was very stressed, and a winter storm came through, crushing my head with pressure. I felt so overwhelmed, frustrated that things so easy for others can be so hard for me. I thought of that famous quote about how a fish appearing stupid if it tried to climb a tree. I saw myself as that fish, and I have this hugh tree to climb. I couldn’t sleep. I felt, if I could just climb that tree, it would all be okay. I was up all night with this. Finally, I came up with a solution. I surrendered my fish-ness, relaxing into the basic minerals and elements that make up my fishy goodness. The tree then took me up through its roots, through the trunk, branches, to the very top. I not only climbed the tree. I became the tree.
    I was able to relax and sleep. I knew I could apply this to the business of our band. I can relax and surrender just those elements needed and not only feed the business, but, be the business.
    I guess what I am trying to say is, sometimes Emma must work it out herself, and your love and gentle guidance will alway make it easier, but, as we know, she must work through herself. Your respect and belief in her, along with you unending love, is what I deeply know supports her best, and that whch you deliver in spades 💜💜💜

    • Chou Chou I just love the tree story, though so sorry you had such a rough night before you were able to metaphorically soar to the top and become one with it! Sending you love, dear Chou Chou, as always, just lots of love…

  11. I too struggle with overwhelming anxiety. But I have the words for it. This is a beautiful story of mothering your daughter. This is what it means to love, to meet her where she is, sometimes climbing over the mountains of our own creation to get there.

  12. Ariane, I think you need to move into my house. I’m only half joking! 😉

    Risa and I both suffer from extreme anxiety. The difference is that while I can voice how uncomfortable I am, she cannot. We are slowly starting to realize that she will very likely never talk, anyway. But she has ways of showing us when her anxiety is bad, and I know for a fact that my own panic attacks spill over onto her.

    Wishing I could be the calm, loving presence for my daughter that you are. I’m still trying to learn. 😦

  13. Hello everyone. Oh how I wish I had the time to read your blog everyday Ariane! Every time I visit here, I am deeply moved, confirmed in my life course and overall just so very hopeful. I only need to survive. my. internship…. I can relate to Em in that the calming voices of my friends would do my heart so much good! Ibby, Chou Chou, from both of you too. I refuse to stop presuming competence.
    ~CJ

  14. Such a precious story. I’ve come to deal with Brett’s spirals like this as well. There are times he just breaks out in sad sad tears and it takes him a bit to work through it. Initially, I would cry with him and be all sorts of freaked out about why it was happening and trying to make it stop etc….then I realized that none of that was obviously helping so I just sit by him and let him know that I am there for him and I love all of him and he will get thru it. I too am a very anxious person. I noticed the other morning I awoke before the alarm and while laying there I began to get anxious about everything and anything in the upcoming day and it was like pictures zapping at me in my head….like someone playing a slideshow on a very very very fast speed. I just had to get up and get moving. I can’t leave myself to my own thoughts like that for very long. Probably why I fall asleep listening to the tv etc…..if I am given too much silence, I worry myself sick. Haven’t really learned how myself to find peace with those quiet times. 🙂 I still don’t really know what causes Brett to have these moments but I worry less about figuring it out now and more about just being with him. As you say, we all spiral out at times and I do think it something like that for him. Just gets to be too much! Thanks for sharing! :O) ((( hugs)))

  15. Such wonderful comments, all of them, and such moving descriptions of what desperation, frustration and exhaustion feel like. All of us experience emotions, all of us, whether NT or autistic, but the ability to express them profoundly lies not in the domain of NTs alone, but obviously in the thoughts and words of autistics above. Thank you, all of you, for your writings. I read this blog every day, and more often than not, I am moved to tears, not of sadness, but of joy in how all of you touch the deepest wellsprings within each of us. Poetry does the same thing for me….I think, deep down, each of you is a poet at heart.

    xxoo Granma

  16. What a powerful thought: It’s not what is said but how the other person feels that matters most. Thanks Ariane for teaching me one of life’s greatest lessons 🙂

  17. Linda Gran-Daniels

    As usual, I am a little late, getting to sit quietly, here in my office and soak in another of your soul filling sharings. I was touched so by the last paragraph…and it so made sense to me. “it’s that when I become fixated on specific thoughts, in my case they are often in the form of fears, I can become so lost in the specifics I lose sight of the emotions.” wow. Isn’t it something, that we learn so much from our children, and that they are often so in tune! I developed panic attacks and GAD after the death of my mother, divorcing after 20 years, juggling a high power job w/raising my dollinks, including my Benjamin, with ASD, and my Dee, an introvert. As I struggled to drive again, each child, teens then, would sense when total quiet was needed, twas like a sixth sense….so I could go into my safe space in my head, cognitively, and calm the demons within. Today, my sweet Benjamin is turning 35….and does not drive. Recently we drove, and having a rare anxiety attack on the freeway, his excited conversation about his meeting, slipped into quietness. I struggled, but made it to our exit. I looked over, and he smiled….saying….you did good, mom. (awww geesh, I’m such a mooshie, the tears are welling) I don’t worry much these days about the words…. I FINALLY Ariane have stopped worrying about the verbal communication differences many might think my children and I have…for I know, as you do, that in the end, it is just enough, to as I call it, to…rest easy, w/them. You do that with you Ibby and Em…and it is beautiful…..just beautiful.
    Linda in Wa state…and oh, I LOVE the pics you post with ea blog. My Lloyd and his family are from there, and he feels at home as I call him in and say, look….:-)

    • Linda – and now I’m really, really late in responding to your lovely comment. Such a beautiful story about driving with your son. Thank you so much for sharing it! 🙂

  18. I loved this entry Ariane. Thank you. All anyone wants is to be heard, not for the words necessarily, but for the sense of real presence and engagement.

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