trust

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Okay, so I had planned to write about Nantucket today. About how excited I am for the trip tomorrow and blah, blah and blah. Actually, I DID write about it. But it’s going to stay put for now, nice and comfy cozy in my drafts folder.

The reason that I’m not posting what I intended to post is THIS. Go ahead, read it. I’ll wait. If you don’t have time, we can move on, but promise me you’ll go back to it later, okay? It’s worth it; I promise.

It’s written by a woman who goes by Autisticook. And it’s about the way in which she was told that the urge to be a mother would feel versus the way that she actually experienced it, the latter of which was very, very different from the former.

And it’s about not trusting her own experience of those emotions because she’d been conditioned to believe that there was only one way to feel this particular feeling, which might sound absurd to the ear, but doesn’t to the heart, because that’s what we parents, and neurotypical folks in general, do, isn’t it? We project our own emotions onto our kids (and the people around us)? And when we have children (or friends) for whom identifying and communicating their internal lives is damn near impossible, we “help” them, don’t we? And how, exactly do we tend to “help” them? By telling them what they feel, right? Isn’t that what we’re taught to do with our autistic kids to help them learn to identify their emotions? Tell them what we think they’re feeling? Which we can only do based on our own (sometimes wildly off-base) assumptions of how they “should” feel based upon how we “would” feel in a similar situation. Are you still here? I know, it feels Mr. Toad’s Wild Ride, but stay with me; it matters.

You see, in the post, Autisticook says this:

And I never considered that maybe I feel things differently from others. Even when I started figuring out that maybe I’m autistic, I still didn’t think that this might mean I simply feel things differently from others. That it doesn’t mean I don’t have emotions. But that how others describe those emotions simply isn’t related to how I feel them.

And then this:

But I know how to describe the feeling that I’ve always believed myself to be cold and uncaring and not maternal, because I trusted that others knew more about emotions than me.

That feeling is sort of anger and grief mixed up. I think.

And too many tears to count.

And Oh. My. God.

I was wrecked.

Because, Oh. My. God.

This is what we do – to ourselves, to each other, to our children.

And I thought of this:

At bedtime, I curled myself around her back as I always do. We cuddled and I pulled her as close to me as I could.

“Brooke,” I began tentatively, “when Tayley died, how did it make you feel?”

“He died. Tayley is dead. We flushed him.”

“Yes, honey, but when he died, how did you FEEL?”

I was on unfamiliar ground. I was desperate to give her a forum to talk about her feelings. But she doesn’t have the language to express more than two of them – or three if you count the occasional ‘frustrated’. I have no idea how much she understands what ‘feelings’ even are. But she had FELT something. I know better than to make the erroneous assumption that because we can’t see her emotions, she’s not feeling them, and this time there was no way in hell that she hadn’t felt something pretty damn intense.. So what then? What had it been? How do I give her the tools to talk about how she feels without making assumptions about how I think she feels? Just because losing a pet would make ME sad, can I assume it should or does make her sad too? Gaaaaah!

“Because he died,” she said.

“Yes, honey, HOW did you feel because he died?”

I gently asked three more times. I was determined not to lead her into an answer. If I put words into her mouth they’d be meaningless. The third time she answered differently.

“I feeled sad.”

Progress. HUGE progress.

And this.

My daughter tends to laugh when people close to her get hurt. If you didn’t know her, you might very well conclude from that isolated fact that she lacks empathy. In fact, you might even think her cold, callous, even cruel upon hearing that she laughs in the face of others’ pain.

But to know her well and to hear the laugh is to understand that it bears not even a remote similarity to the one that she emits when experiencing joy. Instead, it is a visceral pressure release valve. An automated response to far too much input because, contrary to what the old Sally-Anne test might have us believe, she FEELS others’ pain so intensely that she needs a way to process the emotional overload.

But if we don’t take the time to search for context, if we don’t dive beneath the surface to look at WHY her behavior is what it is, we can easily convince ourselves that she is deriving pleasure from someone else’s pain. This conclusion, drawn without context or depth of knowledge or broader understanding of how she experiences the world would be not only useless, but terribly destructive.

And then I wrote the longest comment on the post, which went like this:

Oh, man this hits hard, on so, so many levels. Firstly, it’s beautifully written. Secondly, I just kinda want to reach through the ether and give you a hug (if you’re a hugger). But this .. “because I trusted that others knew more about emotions than me” … this is so, so important for all of us to really, really hear.

My daughter has trouble labeling emotions. That leads us to try to help her to do so, since it seems like an important tool for her to be able to describe to others what she’s feeling. But in helping her, we end up guessing a lot, assigning a lot, assuming a lot. We say things like, “Wow, you look frustrated,” or, “Gee, I know that when X happens to me, I feel Y.”

But every time, I pause, and I try to table my assumptions or at least couch my language because I know full well that she experiences the world differently than I do. That what may look like frustration from the outside might feel like something else entirely on the inside. That just because Y is my reaction to X, or even a typical reaction to X, it sure as hell doesn’t make it the only or “right” one.

I want her to know that what she feels is VALID. That it may be a different expression of a feeling or it may be a different feeling entirely, one that I simply don’t have the lexicon to help her describe, but that it’s okay to feel it, whatever the heck it may be and that whatever it is, it’s just as real as anyone else’s version.

This is why I get so bent out of shape by the whole “autistics lack empathy” crap. That’s why I write stuff like this in response to it …

And it’s funny really (in a not funny at all kind of way) that we talk so much about the inflexibility, the rigidity of those on the spectrum when really, isn’t it US, the so-called neurotypical population, who are stuck in this frightfully narrow rut of perception? Isn’t it us who insist that autistics conform to our version of .. well, everything? Isn’t it us who are really so rigid in our thinking as to be capable of dismissing the idea that other ways of processing / thinking / communicating / experiencing are wholly invalid? That’s pretty remarkable (and, in its practical application, horrifying) stuff, isn’t it?

And this ..

Time and time again we hear and we see that the manifestation and expression of the human experience is different for those of divergent neurotypes than it is for neurotypicals. It is expressed, well, a-typically. But because we don’t recognize the expression as the same as those manifested in and expressed by our neurotype, we dangerously dismiss the possibility of its very existence.
I’m not sure I’m even making sense anymore, and I really, really don’t mean to be taking up so much space here, so I sincerely apologize, but the pain and the longing in this post is just so … well, I wish it didn’t have to be. I wish someone could have said to you, “This is how I experience maternal urges, but it may be very different for you.” And I hope that we can do that now.

Thank you for writing this. You’ve just changed my back-to-school letter to my kid’s team and for that I am grateful. And I pray that you find peace in all of this and I really look forward to reading more.

Followed by another that said this, because, yeah ..

P.S. that might have been the longest comment in the history of the world. Please don’t feel obliged to publish it

And this morning, I still can’t stop thinking about this, because it MATTERS. Because I never want my child to doubt the validity of what she’s experiencing just because it’s different from my experience — or anyone else’s. And I thought of my Facebook post yesterday – the one that said this:

So you know when your kid just will not eat dinner and it’s like salmon and rice which are two of her four favorite foods not including gummy cherries but she still won’t eat it and she says she has a stomach ache but keeps asking for an ice cream sandwich because “dinner is all done” even though it’s clearly not ’cause she’s not eating and you tell her that she has to have healthy food before she can have crap (but you don’t say crap cause she’s a parrot and that would be bad) and she continues to protest and you continue to push and you FINALLY convince her to eat it because she REALLY wants the damn ice cream and then when you take her out to the patio to eat the ice cream she barely touches it because she says she’s full and you’re totally confused because, well, it’s ice cream, and then you hear your husband from inside the house say, “Uhhhhh” and then he comes out to the patio to ask your kid if she knows anything about the empty bologna container on the couch in the den and she says, “I ate it,” and he says, “When?” and she says, “Before,” and he says, “ALL of it?” and she says, “YEAH,” and then you realize that your 51 pound kid ate a half a POUND of bologna before sitting down to dinner and suddenly it all makes sense and you feel like a horse’s ass and then you start to wonder what a half a pound of processed meat is going to do to a 51 pound kid right before she says, “I have to go to the bathroom,” and you’re like, “Duh” …?

That.

Which was supposed to just be a funny kid story (she was totally fine, I swear!) but then, after reading this, it just wasn’t funny at all because all I could think was that my girl was telling me that she was full and that her stomach hurt and that dinner was done and I didn’t HEAR her because if she hadn’t eaten dinner in front of me, then she hadn’t eaten at all, right? Um, no.

I never asked her if she’d had a snack before dinner (a direct question might well have elicited that information) or even if she’d had a late lunch. No, I told her instead that her stomach hurt because she was fussing about eating. And that we all get tummy aches when we get stressed out and that she was creating a stomach ache because of all the fuss about the food.

So, to recap, instead of trusting my daughter to know her body, to tell me that her stomach hurt because she was full, I told her that what she was telling me wasn’t true – that she was WRONG about what she was FEELING. Hullo?

And yeah, it’s hard that she can’t just say, “No, Mama, it hurts because I ate a friggin crapton of bologna,” but knowing that, I have a responsibility as her Mama not just to listen but to HEAR her when she tells me what’s going on (in whatever way she “tells” me, even if it’s simply by pushing her plate away when she doesn’t have words) and to investigate further before jumping to conclusions that can only be made through the filter of what I know (and are therefore at pretty significant risk of being inaccurate.)

It’s my job to HEAR her when she tells me what’s happening inside her body, her mind, her heart; to send a message that I respect her and I respect what she’s telling me.

In other words, to trust her so that she can trust herself.

Because really, that’s where it all starts.

Thank you, Autisticook.

Thank you.

18 thoughts on “trust

  1. No, thank you for listening. I’m so touched that you read my words and applied them to your daughter and what she might be feeling. It’s an incredible (and incredulous) feeling. That what I say can make a difference. That it’s not just for myself, trying to make sense of why the question “how does that make you feel?”, the question therapists always ask, makes me feel confused on a good day and angry on a bad day. Because I don’t know! But I know that if I choose the wrong emotion word, I’ll get punished with misunderstanding and THOSE LOOKS that therapists can give and then they start writing down things and oh god I know I used the wrong emotion word and how can I stop them from judging my feelings simply because WORDS.

    So. Yeah. You’re amazing. Thank you so much for listening. I hope you will inspire others to do the same but just showing that you want to listen is amazing. BIG HUGS. 😀

    • oh, honey, listening is easy; it’s hearing that can be hard.

      stealing a page from my dear friend barb, who always signs off with how she’s feeling at the moment ..

      work in progress, j

      xo

  2. This is a really hard one. Everyone has to trust their child (children) and yet we have to guide them along their paths. You also have to trust yourself in that process. You’re sensitive to Brooke’s needs and that’s the most important thing here (bologna aside).

    Love you,
    Mom

  3. This one (and the post from Autisticcook) makes my heart heavy. Like Brooke again, my own Little Miss’s experiences come out confusing and garbled. I’ve yet to decipher all the significance of her favorite scripts like you have with Brooke and as a lover of all things language, I am surprised by my continued frustration over learning the most important language of all – my daughter’s “native tongue.”

    This post gives me something to stew on – and a renewed desire to continue to build the connections between my daughter’s words for her experiences and my own. Thank you.

    • okay, here’s the thing. i’ve put so much thought into this lately and here’s what i came up with, some of which is actually encapsulated in eguthaus’s incredibly generous comment below ..

      the effort matters.

      hear that, okay? we can’t always get it. we won’t always get it. but if we show our kids the respect of TRYING to get it, if we always send them the message that we’re in this for the deep dive, or whatever it takes, that we RESPECT them enough to WANT to understand .. that matters. because it gives our kids the freedom and the incentive to keep trying to be understood and it slowly but surely gives us the tools to meet them, even if it’s in fits and starts, somewhere in the middle.

      and i think there’s a huge gift to both us and our kids in simply acknowledging to them (out loud) that even if we don’t know what they feel, even if *they* don’t yet understand how they feel or have anything close to the language to describe it, WHATEVER IT IS is VALID.

      that’s what gives them the confidence to explore it, no? to self-actualize in the truest sense – to come into who THEY are rather than spend their lives trying to emulate who they think they need to be. okay, i’m rambling, work beckons .. but just know .. i’m convinced that the effort matters.

      xo

      • This is what makes you a great parent to both your girls. Because you HAVE to do this for Brooke, but you were already doing this for Katie. Having the insight, and the confidence as a parent to “RESPECT them enough to WANT to understand” – it’s priceless. As an NT kid of NT parents that sadly didn’t think this way, the bruises on your heart can take a long time to heal. But with time to heal and some self reflective parenting, we do this for OUR children and break the cycle. Thanks for putting this into words!

  4. A couple of things really strike me here, Jess, but none is more beautiful than the fact that you discovered this connection via a crapton of friggin bologna! Beautiful bologna?! Hear me out…the point is that *you* are blessing the pants of your kiddo (and your family, hell, anyone that encounters you) simply because you’re present enough and willing to go deep enough to make the connections that serve people better; that allow you to love them better. We need more of that!

    • i think we have the title of the book .. “beautiful bologna” by jess wilson. but dear god, can you imagine the google searches? lol

      kidding aside, thank you for this. truly.

  5. i did read her terrific post…and you’re right, it was amazing. autistic cook has a new fan. to me, this is what makes blogs so powerful…not just the sharing, but the way the sharing changes us…lost in my head, i used to think i would write to tell my story…but now i realize i write as a way to connect my one, tiny story into this big, beautiful colleciton of many, many stories…all of which interact, impact one another, change the trajectory of the other stories, as we read and learn and change. the big collection of stories has a terrific new entry thx to you and autistic cook.

    • I swear to God, this was in the email I sent to Autisticook this morning …

      “Thank you for this. I love cross blogination, as M calls it ;)”

      #crossbloginationisthenewblack

    • I love this comment about the community and connections between all our stories. It is so important. (And as a women’s studies scholar it makes me think of feminist consciousness raising; so much of feminist political work was not big protests and rallies, though they/we did/do that too. It was women gathering together and talking and sharing stories and creating change in each others’ lives. Realizing, you are not alone and it can be better; we can make it better.

      • Omg, yes! I’ve always been so humbled by the fact that it was in city parlors and the living rooms of suburbanites that the changes that the leaders of the movement envisioned really took hold. I’ve always believed that while we may know the names of the Gloria Steinems, Audre Lords, and Simone de Beauviors, the power of those in the living rooms, talking, thinking, sharing their experiences, opening their minds to new ideas about what it meant to be female in our world and learning TOGETHER how to move forward with what they had learned was equally, if not even more, profound.

        I like to think of Diary as one of those living rooms. Where we gather to talk, to share, to think through what it means to be different, to raise children with differences, where we muddle through the messy stuff to find the lessons and then try like hell to implement them in our day to day lives. Then come back to talk about how it worked – or didn’t.

        I remember hearing the word pedagogy for the first time in a women’s studies class in college and how much it resonated with the way in which I learn. I just looked it up to check the spelling before writing it here and came to a wiki entry, which talked about the concept and evolution of pedagogical teaching. And it said this ..

        “These theorists have laid a foundation for pedagogy where sequential development of individual mental processes, such as recognize, recall, analyze, reflect, apply, create, understand, and evaluate, are scaffolded. Students learn as they internalize the procedures, organization, and structures encountered in social contexts as their own schema. The learner requires assistance to integrate prior knowledge with new knowledge.”

        Recognize, recall, analyze, reflect, apply, create, understand.

        Yup. That sums it up.

        Thank you for this.

  6. Once again you have shined a light on something that I didn’t even know was there. I grew up as a basically NT kid with huge social anxiety (even among family) and a intense need for privacy, especially when it comes to my own thoughts and emotions. I didn’t realize until now that it’s not that I need that privacy, it’s that trying to explain my own emotional state is exhaustive and almost impossible at times. My mother (an extremely emotive person) does not understand why I was such a “withholding” child. I was accused of being obstinate, defiant, cold, distant, etc… because I would not tell my mom what I was thinking or feeling. (especially when something she deemed worth talking about happened) Here’s the kicker. I have an NT son just like me who won’t/can’t even speak when he is emotional about something, yet I find myself doing the same thing my mother did. I try and pry something out of him to make myself feel better because I was raised to think that if your kids didn’t talk to you it’s because they were being difficult. I get angry with him. I demand he tell me what he’s feeling. (it’s ridiculous) Parents do this not for their kids but for themselves, to make themselves feel better. We feel completely out of control when we don’t know what is going on in our little ones heads. But we sacrifice them in the process. I know because,much like Autisticook, I grew up thinking that something was wrong with me and that I didn’t have normal emotions. And I have parented trying to keep my kids from that same fate. Your blog has been a wake up call for me and has taught me a lot in dealing with my Autistic son, but this, this is for me and my beautiful little middle child who, despite his NT brain, still needs me to “hear” him, especially when he can’t speak.

  7. The other day, my 12-year-old ASD son came home from middle school and told me a story about a conversation with a boy in his class during school picture time, who had told him that he looked nice in his picture. N, who does not do well with even positive attention given directly, apparently told to please stop saying that, and the boy, no doubt confused, told N that he was being “kind of a jerk.”

    In telling me the story, N looked at me indignant and said, “I feel like he was being a bully to me.”

    I tried to turn it into a social-skills lesson, pointing out that the boy probably felt attacked for giving a compliment, which is generally a GOOD thing, not a BAD thing. But N was having none of it; he kept insisting that it “felt like he was being a bully to me.”

    Note the exact wording of the quote. At the time, I was trying to press home my point, and ignoring the word “felt” for the word “bully,” trying to get him to realize he can’t go around accusing people of bullying him when they really are not. (He had gone to his teacher to complain about the boy, so that was a legitimate point for me to make; I felt badly for that kid, who has special needs of his own, and who had done something NICE for crying out loud and now was going to be put in a position of being talked to by the teacher? Sigh…)

    ANYWAY: Eventually, I just said, “All I can tell you is that that boy was NOT being a bully to you.” And N, angry now, started stomping to his room, only to turn around and say, “It FELT like he was. You’re not in my body, and you don’t know what it FEELS like.”

    And with that, I shut the hell up. Because YES. And because that was probably the first time he’d ever said something like that to me. And it was totally amazing. An amazingness that stuck with me, despite my also feeling like a complete idiot.

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