“It’s Important That Other Parents Understand.”

Written by Emma Zurcher-Long

“I will talk about the upheaval from last night”

“I toyed with downward feelings of rage then

as bountiful memories seeped into my raging mind

I surrendered to purposeful sleep

my screaming mind is momentarily spared from stormy thoughts

piercing my being

threatening no kindness

patience is ground down til pounding terror is all that remains.

Only the dedicated few

talk about love during episodes of furious pain

their love is rejuvenative and restores faith in this awkward world.”

 

From Ariane:

Emma wrote this after having a very rough night over the weekend.  I asked her if it was okay to post her beautiful words here and she agreed.  I asked because there was a time before we had found a way to support Emma’s outpouring of words, before she was able to write, before we were able to understand, before we understood…  those were the times when nights such as the one she is referring to were even more devastating for all of us and our assumptions about what might be going on were so often wrong.  Emma agreed to post this because, “It’s important that other parents understand.”  The problem with the assumptions we made was that they often led us to then behave accordingly, even without meaning to, they affected how we responded to her.

We might have thought – this is a manipulation, she is doing this to us.  We are being held hostage to her screams.  We would mistake her terror for manipulation.  We might withhold our love in anger.  We might assume that to not do so was giving in or condoning the “behavior”.  We might do any number of things to “show” her that this way of being was unacceptable.  Except that this “way of being” was so beyond the scope of our experiences, so beyond what we could make sense of.

“Pounding terror is all that remains.”

And so I remembered afterward the comments from this post, “What Others Had to Say: Love, Overwhelm, Violence” and all the people who so generously opened up their lives and wrote about their experiences with being overwhelmed and no longer able to cope.  That point when feelings completely take over and all we can do is weather the storm.  Emily K. wrote: “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

And Autisticook who wrote:  “It will get better.”

And she also wrote this:  “Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.”

And this:  “You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.”

And this:  “Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me.”

And this:  “I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.”

And THIS.  This is SO important:  “Don’t ask me questions.  If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again.

And this: “Don’t try to distract me.”

And this:  “Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.”

And finally, this:  “Please give me time to process.”

I would like to report here that I remembered each and every one of these things and that I put them all into action, but I didn’t.  What I did do was try to remain calm and loving.  And when my calm began to fray, I tried to remove myself, while reminding her of my love.  I did a number of things right, and I made a number of mistakes.   We are all learning here.  When calm was restored Emma said she wanted to write about “the upheaval from last night.”  This was in response to my question, “Is there something in particular you want to talk about this morning or would you prefer we discuss an article from the New York Times?

I was surprised she wanted to talk about it.  And then she wrote those beautiful words, which I can only describe as less prose and more poetry, a song, really.  A song borne of experience, despair, and transformed into a thing of beauty.

The beauty of Emma.

Emma ~ 2012

Emma ~ 2012

 

47 responses to ““It’s Important That Other Parents Understand.”

  1. Wonderful! I also relate to many of the comments from the earlier post, especially the one that says “Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.” This applies to other areas of life, too, and creates endless frustration to me, even to this day, when well-meaning people tell me I am doing something wrong and then “leave it at that” — that is not helpful.

    • Yes. Agreed. For criticism to be constructive, it has to provide an alternative, or a better way of doing things. “Doing that is wrong,” is insufficient. “Instead of [undesired thing], do ____ because it doesn’t [bad thing] but still [thing you wanted].”

      And parents/adults/authority figures need to support self-advocacy, even if it’s weird or rude. If the kid is plugging their ears, don’t yell at them for it. Ask them why. Then provide an appropriate but workable alternative that 1, you’re willing to support the kid in (so if the decision is to have Kid wear earplugs, you need to intervene if other adults try to get Kid to remove the earplugs, and you need to shut down teasing from other kids), and 2, doesn’t basically amount to “don’t be or act autistic.”

      • ischemgeek – thanks for adding this.

        Also, Emma has written that any questions, even questions meant to help the other person help her, are painful and often impossible for her to process in the midst of upset.

        • Yes, of course. If kid is upset, ask after, definitely. Like Emma, I have a hard time processing questions and a really hard time articulating answers when I’m upset. I don’t find it painful, but it’s just more of a can’t-do thing and that can be frustrating.

    • That part particularly resonates for me as well. I don’t know that ALL humans are as triggered by criticism that gives no alternate way of being, as I am, but I would guess most people find that brand of critique unhelpful.

  2. Love love love for you all and for everyone. You are on your way and it is a beautiful journey.

  3. Emma. In what you say, you’ve covered every base that my life-experience and intelligence allows me to see. You then speak of things in ways I cannot. I’m gratified to witness your emergence at this internet distance. Respect.

    • Just an update Emma; I’ve had a work shift since this morning. Reading what you and Ariane had to say this morning, provided me with a pick-me-up; so that was a good thing. But last thing, just as I was packing up to go home, a 14 year old boy student came in, not too happy and having hurt his hand hitting a wall. I was able to use pretty much everything you and Ariane spoke about above. Maybe the strongest part was what you had had to say about hitting the triggering thing until it goes away. He thought this was a good and useful way to look at things. Long story short, your wisdom helped both he and me; and that can’t be bad.

      • So glad, so glad Colin.

        “Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.” was written by Autisticook. Brilliant.

  4. Ariane, everything you say and report after Emma’s poetry, is wonderful.
    “Emily K. who wrote: “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”” Then stands out for me, as does Emma saying that, “… the only way I know how to stop something is to hit it until it stops moving.””
    I feel that Emma’s poetry and prose provides us with the ground on which to stand to do the various things which Emily.K. recommends.
    When engaging autistic students, I often see what they are doing in how they engage me and others, sees them trying to put us in their “space”, with all the riders that Emily. K. speaks of. I think this sees them “hit” our space until it stops our space ‘moving away’ from theirs.
    I think this not leaving autistic children alone in their existential space, especially important with what Emma is speaking of as “pounding terror”. It strikes me that an autistic senses-wide-open approach to being human, allows for euphoria and terror in equal measure; as each is an aspect of transcending (or not being able to settle for) socially normative illusion. Social reassurances and complacency do not cut the mustard for the autistic child, because of what their sensory-cognitive processing streams to them.
    So let the autistic child push-you pull-you hit-you into their “space” (with all Emily. K’s caveats and injunctions), and give them back what enables you as an adult to stand in the face of the existential terror they allow you to share.

    • “Only the dedicated few talk about love during episodes of furious pain
      their love is rejuvenative and restores faith in this awkward world.” That, to me, spoke volumes. Of all the things I might say or do, it is to embody love for another during times of distress that I have known personally to heal in ways nothing else can or would. I have been the fortunate recipient of this love as well as the grateful giver.

  5. These words…all of them…yours, Emma, Emily K.’s and yours Ariane, are so powerful and profoundly important. Not just other parents need to know this, all of us do. When I read this post I think of what a ridiculous, simplistic and dangerous miss most “behavior programs” are. These insights invite us to think relationally and sensitively, instead of operating on mean-spirited one dimensional assumptions. Thank you. I will repost this in hopes that many more people will read it and rethink typical responses.

    • And Autisticook! On the original post where Emily and Autiticook commented on, there were others too, equally as important… and yes, all wrote with similar thoughts. To attempt to “treat” any of this with behavior programs, all of which are based on often erroneous assumptions makes no sense at all. Thank you so much for sharing this, Emma!

  6. You and Emma are beautiful and helping me so much….

  7. Having lived a long time with my own obsessive-compulsive behaviors (I’m hesitant to call it OCD thinking as I’m really not sure how much “thinking” is involved), I so sympathize with Emma when she is in the grips of these internal commands to complete a specific cycle/ritual or to “fix what isn’t right.”

    I wish I could say I fully empathize with Emma when she is about to have a meltdown or is in the midst of one, but the truth is, I can only relate it to my own OCD experiences that may (or may not) be similar. Emma’s neurology and thought process is so different from mine that I can only imagine how much more severely she feels the agony of not being able to “do the thing” that an obsessive-compulsive urge demands of you.

    I am quite sure, if based on nothing more than what Emma wrote to describe this particular episode, the her pain is much more severe than any discomfort I felt when trying to break an obsessive-compulsive cycle and “disobey” the command.

    I am currently reading a book with Emma titled: “You Are Not Your Brain” by Drs. Jeffrey Schwartz and Rebecca Gladding who have had a great deal of success minimizing OCD behaviors through an approach that is similar to some mindfulness mediation practices. I’ll ask Emma for her opinion on the material when we get a little further.

    Someday I should write a post on how I put a full tank of gasoline on the fire of my own OCD. It is so ridiculously ironic (or ironically ridiculous) that it should get a few laughs at least.

  8. And, of course, Autisticook’s words. Credit always where it’s due!

  9. patricialebau

    The yogis say, “you don’t have to believe every thought your mind has.” It helps me with fear. Now when I get into fear I am trying to say to myself, “the game’s afoot.” Meaning, ok here we are in a life and there’s stuff to be afraid and upset about and it hurts my stomach and I don’t want to feel this but it’s here and ok and nothing unusual and perhaps that’s just the game of life we’re in. And it’s getting interesting (again sigh). There have been times when I have been homesick or dreadfully uncomfortable in a situation and totally self involved when someone out there has said, “oh she’s just trying to get attention.” So totally incorrect is this. Just plain wrong. But. Hearing that someone thought that of me was a big aha for me, too, as in “oh those ppl out there are seeing/hearing this. oops.” I was so totally in my own pain, there was no out there really. Ppl were extraneous, not part of perception. Only the discomfort in the belly, the emotional terror and the fear that it would never go away. It lessened in adulthood but I still feel the belly discomfort and the blue stuff come in and then “the game’s afoot” and there’s this other part of my mind witnessing and that’s the calm part watching and waiting for relief to wander on in.

    • I find not believing every thought, while such a simple and seemingly easy concept, very very difficult to put into practice! I like your “The game’s afoot”!! I also try to remind myself to be curious. Curiosity is so much more fun than shrinking in fear which is my knee jerk response.

  10. As always, love your words Emma!

  11. Thank you Emma & Arianne. This is exactly what I needed to read right now to help my son, who’s having a difficult time.

  12. Marie Brennan

    This is so interesting! Katrina has cycles sometimes of having to use different bathrooms. We have keyed locks on all the exterior doors because bathrooms across the street are sometimes her target and she doesn’t look when crossing streets. When we go somewhere she intuitively knows where all the bathrooms are and uses them if we stay anywhere too long. She also has a fingernail clipping cycle where she just has to cut all of her nails down to the quick, and she sometimes trims the ends of her fingers as well. She tries to stop herself from doing this behavior by throwing the fingernail clippers behind the stove, or the refrigerator. If she is in a store, she sometimes can’t stop herself from shop lifting the fingernail clippers, so we try to avoid the health and beauty sections, if we can, while she is with us. I agree with Richard. I don’t think there is a lot of thinking going on at these times, just a lot of anxiety. Katrina’s diet seems to affect her levels of anxiety, also, we use herbal supplements and vitamins to help her. For Katrina, 100mg of L-theanine (green tea extract) can stop an anxiety attack in 20 minutes. We try to be careful not to use it too much, so that she doesn’t develop a tolerance for it. We can tell by her level of stimming if she is becoming anxious. Staying calm, controlling the environment to reduce stimulation, and offering gentle support are generally the best ways to react. (Not that we are always especially good at that.)
    Now that Emma can share her feelings, she will eventually, hopefully, be able to help you figure her out. With us it’s been guessing a lot, and praying for inspiration, which does work, if you are willing to experiment, and if the child/adult is willing to let you 🙂

  13. Emma has beautifully described the dynamic balance between terror and euphoria that characterizes emotion in autism.

  14. Emma your poem is brilliant and stunning. You are in William Blake’s line of artistic depth the way you take on the terrible and the wonderful, the epic struggles you experience. You are on a Hero’s journey too. I have been by my son Noah’s side as he traversed the psychic terrain of autism tantrum land. My wife and I have faced the Tyger (famous poem by Blake) in Noah stalking us, pouncing, clawing. What really helped me as a Dad was when my good friend, another autism dad reminded me that my heart was big enough to hold a loving space for anything Noah could come at me with. When I let my heart out fully to hold the space for Noah’s tantrum violence that attacking young mountain lion had no prey and has not returned since. Nowadays Noah puts his fierce energy into his amazing distance running, climbing, gymnatics and poetry performing. Here’s a link to his poetry.

    • “Come away, O human child!
      To the waters and the wild
      With a faery, hand in hand,
      For the world’s more full of weeping than you can understand.” Wonderful.

      • “Weaving olden dances
        Mingling hands and mingling glances
        Till the moon has taken flight;
        To and fro we leap
        And chase the frothy bubbles,
        While the world is full of troubles
        And is anxious in its sleep.”

        • Hi Ariane–Emma’s Hope Book is inspiring me to do more blogging, get our story out there like you have. True that individuals with autism are as varied as neurotypicals but there is also some kind of soul magic/ neurological cousinhoood that unites them in similarity in how they navigate this world. I kept nodding as I read this last post–Yes! Yes! Yes! YES! Noah, my wife, MaryEllen and I have been through all of this and cultivate as best we can all these gleanings of best practices for befriending autism that Emma and you write about.

          We’re from California but every summer we visit Sharon and her daughter Lizzie (Noah and Lizzie both 13 with autism). Lizzie is an amazing visual artist,( soul daughter of Walt Disney) We hang out for the day on Roosevelt Island where Sharon lives. Last summer Noah and Lizzie took off on their own. The two moms held their breath as the kids disappeared out of view. I was mostly delighted at the spontaneity. An hour later we caught up with them. Lizzie had shown Noah around town a bit, going to a couple video stories (there’s only one street on Roosevelt Island, phew!) The adults had some Chinese whiskey later. I wonder what the kids will come up with this year! You are welcome to join us sometime in early July for a tea party.

  15. Beautiful words by Emma and great advice by everybody else.

  16. Emma thank you again for putting into words what I know my son wants to say. I tried for so many years to get this message across to teachers who insisted that he was being stubborn, naughty and just kicking off to avoid doing things he didn’t want to do. I can’t tell you how grateful I am to hear the voices of those who really know what they are talking about – those experiencing the feelings. Those who claim to understand autism, need to experience first hand an episode of such intense anxiety and fear and then know what it would feel like to be punished or blamed for expressing those feelings. We have taken our son away from these people and he now lives every day knowing that those of us who love him will never let him down, embarrass or shame him. Keep writing Emma – and keep teaching us. X

  17. Pingback: Body/Mind Disconnect & Soma | Emma's Hope Book

  18. Every time Emma writes something I think, well, she has hit the nail on the head this time. She can’t top that. But she does! Emma threads the needle with her words, expressing nuances of her experiences very clearly. Her words are treasures.

  19. Pingback: Dealing with bad times | My Little Mad Scientist

  20. Pingback: Raging Screams and Shame | Emma's Hope Book

  21. ‘talk about love during episodes of furious pain

    their love is rejuvenative and restores faith in this awkward world.”

    I am understanding this better, and also truly understanding so much of what you are teaching me Emma… I am finding that I can hold onto the love part fairly well … it gets easier and easier, the more I understand.
    I feel protective, and a sincere, loving compassion… after four years together, it comes naturally now. The best thing about this is that we are a group of 6 friends, and everyone has come to understand and be kind when it is happening to someone else. This acceptance and trust, above all, has helped everyone so much already.

    “Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.” was written by Autisticook. Brilliant.
    I can understand this too, and it is easier for me to let this happen. Sometimes things get broken and destroyed… but it’s just ‘things’ .

    But here is where I am struggling and I don’t really know what to do. Big strong adult autistic guys who feel this way…. my good friends… occasionally put themselves and others in danger when they feel like this. I can let walls get destroyed, we just keep fixing them! But what do I do when they are in danger and I have to act quickly? I still resort to ‘distraction’…. loud sudden sounds…yelling… giving orders… to get their attention to keep everyone safe. It works, but it sounds so mean to me, when I do this to them. Afterwards, I apologize and remind them that I wasn’t really mad or upset, but that I felt I needed to resort to that. but during an episode… I just can’t figure out what else to do…. yet. It makes me so sad. Any suggestions? They are not able to truly communicate how they would like me to respond, yet. But we are working on it!
    Thanks to you both… you help us so much! Diane

  22. Hi Diane, (Ariane here)
    I had one thought that may or may not be helpful, but have you gotten to the point of giving choices yet? If so, I would try to gather information by giving choices (even if its pointing to “yes” or “no” to find out how each person would prefer me to respond.
    If the person is feeling the same degree of shame and remorse so many people I know have expressed, then it is also imperative they know that no one is judging them or condemning them. (It doesn’t sound like you are doing any of this, but just thought I’d mention it as so many people (of all neurologies) have experienced shaming, anger and condemnation, a thinking which can become easily ingrained in our thinking and how one feels about oneself.
    Do you know of Judy Endow? She is Autistic, in her fifties, a writer, advocate, mother, artist… one of her books talks about how to circumvent explosive situations. http://www.amazon.com/Outsmarting-Explosive-Behavior-Intervention-Individuals/dp/1934575445#

    • Diane – I completely forgot… you MUST read the series I did regarding when upsets turn violent. The link is in the body of this post above – What Others Had to Say – The best information given is from other Autistic people in the comments section. Definitely worth reading.

  23. Thank You! Yes, I know of Judy! and yes I read your series back in May and then just re-read it again… it is amazing (I just adore Autisticook and her perspective). Your comments above helped me to sort some of this out, and I realize that we mostly do pretty well here during ‘regular’ meltdowns (the other guys barely blink an eye now). Giving space and not judging… it is coming naturally most of the time. Brent, who is just getting started with RPM, is having a much easier time. I speak to him now as he is escalating into a meltdown and I just mention Soma and remind him that I’m understanding more, and he actually hears me… the look of peace that comes over his face then just melts my heart. He knows I know…. even though I’m struggling and he cannot yet respond to me in the same way as he does for Soma and Lenae, her intern.
    However, with others here we have Tourette’s and OCD and an imbalance of meds probably…complicating the autism… and that is when I am needing to intervene in meltdowns in a way that I don’t like. It is difficult to talk much about it afterwards because it will trigger the Tourette’s again! It has been a year of trying to correct meds… exhausting for my friend. He speaks mostly in scripts and has asked us to put up solid wood walls so that it will hurt his hand when he lashes out and that will make him stop…. it’s heart wrenching. When I ask him how he would like me to respond, he asks me to yell and make loud noises to get his attention (so he can stop and focus on getting control, I assume.) I was thinking that he felt safer knowing that I was in control of things. However, he may not mean what he is saying, I know. I could really use a Tourette’s community like this one… neurologists have been no help at all.
    Thanks for your help, and thanks for this blog!

  24. Excellent blog you’ve got here.. It’s difficult to find good quality writing like yours
    nowadays. I seriously appreciate people like you!
    Take care!!

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