part two



{image is a photo of Brooke and our dog, Winston in 2010. I chose it because it came from this post.}

Part two. Because there’s a part two.

Earlier today, I wrote about the fact that until Brooke was able to put language to her anxiety, I didn’t really understand it.

Until she said the words, “I don’t want to die,” I really didn’t come close to grasping the depth of her fear.

The latter is true. I didn’t get it.

The former, I realized in an ugly epiphany this morning, isn’t.

In 2011, I wrote the following in the back to school transition letter to Brooke’s team.

Emotional identification (both self and others) and expression. Brooke has been working on this round the clock this year. This has been a HUGE part of unlocking her ability to communicate, understanding social construct and both building and comprehending narrative. She has been making incredible progress! Recently she has begun to identify and share her emotions with us. Sad, scared, happy, excited and mad are the ones she uses the most, sometimes melding / confusing them, but at least using them as catch-alls for positive or negative feelings.

There is some version of that in every letter since.

For years, I have unwaveringly believed that Brooke was using the phrase, “I’m scared,” as a placeholder. I believed that “I’m scared,” was a catchall for any kind of feeling of unease. I believed that, because she had limited words in her arsenal from which to choose to identify emotion, she was falling back on, “I’m scared.” I believed that as her lexicon grew, so the descriptions of her emotional states would follow.

I thought that she simply didn’t yet have the ability to tell us how she felt.

I was wrong.

Really wrong.

And the presumptions behind what made me wrong are horrifying not only on their broader implications, but even in the very most narrow.

My daughter told me how she felt.

And I didn’t believe her.

Worse, I didn’t believe her because I didn’t believe IN her.

Ed note: Before we continue, I need to say this. Please, please, don’t start telling me not to beat myself up. I’m not sitting here in a hair shirt, but I am, absolutely, positively, judging myself and inviting you to do the same. For a reason.

If we don’t allow ourselves to look back with a critical eye on where we’ve been, we ain’t going anywhere but where we are. And our kids deserve better.

So please let me analyze this without a pat on the head to tell me that I shouldn’t feel guilty. It doesn’t make me less of a mother to have screwed up. It would make me less of a mother if I refused to acknowledge and learn from  he fact that I did.

Moving on …

The point is that I, who constantly proclaim the importance of presuming competence, wasn’t. When my kid was saying that she was scared, I was processing every bit of information I had through my own, neurotypical filter and coming up with the conclusion that she didn’t really know how she felt.

Jesus. Can we just take a moment to think — really think — about how patronizing that is?

I would assume that “I’m scared,” meant, “I don’t want to wait,” or “I don’t like running late,” or, “I’m sorry that I gave the dog a carrot,” or, “I don’t like that you’re upset that we’re in the wrong lane.”

“I’m scared,” meant “I’m scared.”  

It meant, “I don’t know what’s going to happen” or, “We’re going to miss it,” or, “I think I killed the dog,” or, “We’re going to DIE.”

She thought she was going to DIE. I think, “I’m scared,” is a pretty damned appropriate thing to say.

And again, I, who stand on the mountain and daily proclaim that behavior is communication, didn’t get it until it was in not only words, but the right words. Because I insisted on dragging it all through MY template, I didn’t see what was right in front of me. My kid wasn’t on-edge or ill-at-ease or uncomfortable. She was terrified.

I’m writing this here not because I feel the need to confess to my sins, but because I’m pretty sure I’m not alone. This is what we do, isn’t it? We watch and we catalogue and we read the tea leaves and then we come to these grossly inaccurate conclusions because we project our neurology, our experiences, our perspective onto everyone else.

It doesn’t work. And we’ve got to stop doing it if we’re ever going to understand one another.

My experience is different from Brooke’s. And Katie’s. And yours. And until we acknowledge those differences, and start trusting one another — believing each other competent of understanding the word and each other and ourselves IN OUR OWN WAY — we’re going nowhere but where we are. We all deserve better.

To my girl,

I’m sorry that it took me so long.

I’m getting there. And I’ll never, ever stop trying.

I love you so much.



28 thoughts on “part two

  1. I love your blogs but as a first time mother coming in January – I especially love this one. I feel that it’s an important lesson for EVERYONE with a child. Thank you for a reminder than when my child starts to communicate – how important it is to listen to what she is actually saying instead of vetting her words through my own filter and giving them my own meaning. And thank you for reminding me that I will make mistakes and that it will be ok as long as I take responsibility for those mistakes, recognize them and work towards rectifying that mistake.

  2. So I’m reading through this and just realizing for the first time that even though I knew that was what I meant when I say I am scared (that I’m utterly terrified, that we are going to miss something, that the world is going to end, that I am going to die) is not what the general interpretation is. Although I’ve been transitioned into using nervous because when even I realize now that in most cases when people who aren’t your close friends or your family ask it, they aren’t asking for the detailed specifics. And if you respond with nervous, they tend to get the idea of general un-pleasant-ness and reassure you a bit, but if you say scared, I’ve gotten mixed reactions. Of people thinking I’m overreacting, or sarcasm-ing, or who-really-knows-what. And you are safer if they don’t know how scared you are. But saying I was nervous about meeting with a professor isn’t accurate. I was terrified that the meeting wouldn’t work and I wouldn’t have anywhere to research and I would get kicked out of grad school and have to move the 2000 miles home and then I wouldn’t be able to get married and so on.

    I am constantly afraid of almost everything. Even things that 23 year old me should know should work out because they have in all my past experience. Even things that I logic through to the conclusions. So much of what I do, especially the things I avoid and the things I don’t do well on, are fear-motivated. Terror-motivated. But things that are especially terrifying to me are things involving people. Because autistic me is especially awful at predicting their reactions. So when I am planning things, like important meetings, I literally have almost no idea how people will react to what I say, unless they are a few small groups of people like my sisters (although I seldom plan important meetings with them.)

    I’m awful with emotions, and especially with emotion-words, but even I know that I am constantly terrified by the things people will do.

    Anyway, I am not sure if I am getting the point here across, but it’s about fear and emotion-words and justifiable fear and levels of emotion-words and how on earth do other people translate them anyway and… I’m really not sure of more than this part so I will stop for now.

    • Your point comes through very well. May I ask if you have learned any techniques to lessen your terror, for example when you reason things through using logic? Because I would love to help my son (who is extremely logical) learn to tell the difference between realistic worst-case scenarios and all-out terrifying possibilities that are highly unlikely to happen. (Now I hope I’m making sense.)

      • What I’ve learned to do is go through and pick up on the frequencies of the worst-case scenarios happening. I had people walk me through this a while at first. It also helps when people explain things to me from another person’s point of view. I.e. one of my best friends reminds me that I am unlikely to be immediately kicked out of grad school without any prior warnings because they have invested a fair amount of money in me and it would look bad for the school because higher graduation rates look better. Those are concrete logical reasons for the other party to behave that way, and they help better than just saying that is unlikely to happen. Once someone has gone through them with me, I can usually recall them in repeating circumstances.

      • Also, I remember that people explaining for other people’s reasonings through emotions, like they wouldn’t do that because they like you, or that is not a nice thing to do so they won’t do it, etc. was not nearly as helpful.

    • It is okay to be afraid of people and unknown events. I hope you know it is okay, that is not unreasonable to feel so.

      There are things you can do to instantly lower your anxiety, and lessen the physical feeling of fear. If you take a short breath through your nose, hold it for a count of four, exhale completely, and hold the empty lungs for another count of four, you lower your heart rate by ten beats a minute on the third repetition.

      No one knows you are doing it. It helps to clear the mind so you can walk yourself through those possible outcomes.

  3. Like a lightning bolt for me, this post. I think when we parent kids who have communication difficulties, we get so accustomed to “decoding” and “guessing” and “solving” (and truth be told, some hubris enters the mix) that we don’t know when to stop. All those years my son told me he was terrified to be away from me because if a natural disaster hit, we wouldn’t be together? That wasn’t a metaphor. That’s exactly what he meant. Terror.
    Thank you so much for this eloquent reminder to LISTEN.

  4. I’m a 20-something woman who has, over the past few years, started to come to the understanding that I likely fall somewhere on the spectrum (with help, encouragement, and overwhelming agreement from family, friends, and educators). I’ve not commented before, but I have followed your blog for a while, and been reassured over and over again by your stories of Brooke (both the joyous and really hard)…when you post photos of Brooke and I can see the marks where she’s scratched/picked at her skin, I feel less alone in the fact that there was no amount of concealer in the world that could completely hide my own marks that day. And when you post stories like this, I can think of so many times when “I’m scared” has really meant exactly that.

    I chose to weigh in today because I thought you could use being reminded of something that I think to be true. Obviously I can’t speak for your daughter, so this is as much a letter to people closest to me in my own life as anything, but you recently referred us back to a post about Brooke writing at school about you being her “safe place,” and so I’ll tell you something that I say to my own “safe places” (people as well).

    When I say “I’m scared,” I actually think I’m going to die. My body feels like it’s dying. But unlike when I’m alone, when you, a safe place, are there, I am somehow able to understand that I’m not really dying. And when you are there and I tell you “I’m scared/panicking/having a hard time,” I’m instantly not alone. My problems are only half as terrifying because when there are two of us, I am only half.

    You will likely never completely understand what Brooke is feeling, and the people who are my safe places probably don’t completely understand either, but it is still always SO much better with you.

  5. We keep understanding more and more because we keep trying. Mistakes happen along the way. We just keep trying (harder then we can).

    Love you,

  6. I’m never sure if relating my own experiences help, but you are not alone. Last year my daughter was being horribly bullied at school. I didn’t realise the mental torture she was being subjected to because I thought ‘6 year olds, really??’ And I didn’t read her behaviour, which was pretty damned explicit either. It took an adult friend saying point blank to me ‘take her out of that horrible place’ for me to twig and act and I think I’m always going to regret that I didn’t listen to my unease and sent her there in the first place.

      • Thank you.
        I’m only speaking for myself, but I think sometimes there’s also a bit of ‘ostrich, head in the sand’ going on. If a child of mine is having a bad/scary time, I may feel completely overwhelmed and clueless as to how to deal with it, it can be tempting to minimise the terrifying and down play it as ‘oh they’re just nervous’. I am very thankful for a husband and friends who feel able to state the obvious to me and just say ‘of they’re scared, then don’t do it’ or similar.

  7. I love this. I’m so inspired by the way you think, and am sometimes challenged to think about the way I do things by reading your blogs. I am always critical of things I did or didn’t do for my boys in the past. I feel it helps me learn and grow as a parent, and better care for my babies in the future. You are one lucky Mama to have such wonderful girls.

    Also, (after reading part one, before reading part two) I had a thought. I tried it. It worked–for my son, anyway. My son does not have autism. He has “severe adhd with atypical behaviors”. Those atypical behaviors fit into many categories. Some are consistent with bipolar disorder, others with autism and so on. While he was overwhelmed, I played a song for him from youtube. Because I love the sheer beauty of the song, I chose Ave Maria (Schubert’s), sang by the wonderful (in my opinion, anyway) Maria Callas. I played it on a low volume as I comforted him. The soft, classical music seemed to help him find the strength he needed to overcome his moment. I imagine that, depending on the child (and the parents preference) choosing the right song either with, or without words might help other children. I will also be trying some classical piano. I’ve always found these kinds of music comforting and they help me focus when I’m working on school work as well. I hope my suggesting this wasn’t offensive – it wasn’t meant to be and sincerely I apologize if it was!

    • One can never offend by saying, “I tried this and it worked for me or my child, so I’m sharing it with you.”

      thank you for the kind words and for sharing your experience.;)

    • my son has always been calmed by music too. from infancy singing is how i soothed him. i often forget that it still works because he’s almost 6 — but after trying to restrain him or reason with him during a tantrum, I eventually remember to start singing, and that does it. maria callas is not an opinion! i’ve been showing my kids videos of her singing arias from carmen lately. entrancing.

  8. I think you have helped some people, by posting this. This is the best way to be a mom, to keep thinking, keep growing. It’s the hardest thing, ever, and when that is said, this is what is meant.
    Thank you for sharing this, and I am so glad you got to this epiphany.

  9. It is *so* refreshing to see a bit of antidote to that whole ever-present mantra that says “the parents are the real experts”, “the parents are always right”, “trust your gut instincts”, “special children are only given to special parents”, etc. etc.

    Parents, even good parents, get it wrong all the time. I know, I’m a parent myself, and I’ve committed my own share of screw-ups.

    I also remember being a child and my own parents getting it wrong. Which is something many parents seem to prefer to forget, because otherwise they’d have to admit to being fallible themselves.

    So, you’re right: you’re not an amazing parent. You’re a good parent, though. You love your kids, you genuinely try your best, you’ve got a sense of humour, and you try to stop buying into harmful BS. That is much better than so many.

    Yes, you should be self-critical and try to improve. So should we all. I have yet to encounter any evidence that this mythical “amazing parent” actually exists.

    You’re an amazing writer, though. And if you can use your amazing writing skills to show parents of autistic kids they’re not actually so amazing and not always right and just not that freaking special, that they’re just loving and fallible parents like almost everyone else, you will have done a lot to help them and their kids.

  10. I find myself torn by this post. As a navel gazing, empathetic mom of a child who can struggle to express himself, I often find myself making behavior-based assumptions about what is “going on with him” only to find out later that I was wrong. That I should have listened to the actual words and took them at face value – presumed competence. Everyday I look back on the day and try to see and even find my mistakes, challenge my assumptions. I believe it helps me relax that NT filter. But as I read your post this . . . “We watch and we catalogue and we read the tea leaves and then we come to these grossly inaccurate conclusions because we project our neurology, our experiences, our perspective onto everyone else” struck me like a ton of bricks, and not in the way you might suspect. My very NT mom is in critical condition in the hospital. Things are not looking good. She is not her usual self. She is angry, belligerent and even rude – behaviors that are unfamiliar to us. My sister and I find ourselves having conversations with the Drs. about her behavior. We have assigned meaning to them. She is scared. She is desperate, ect. “We watch and we catalogue and we read the tea leaves,” but in this case it has nothing to do with projecting our own neurology. I am learning more and more that it isn’t always about our neurology. It is what we, as self-assessing human beings, do. We do it with everyone in our lives. We hear what they say, listen through our own personal filter, assign and mold the meaning of the words, the behaviors to fit with our own understanding of the world. It is why we have to work at relationships. It is why it is so important to grow and stretch our experiences and understanding of others perspectives on a daily basis.

  11. This really has me thinking….my son frequently says,”I’m scared,” and when I ask of what he usually nothing. I never knew someone else’s child frequently sais,” I’m scared.” I’ve often said the very same thing-he doesn’t have enough vocabulary to tell me he’s anxious,, disappointed, worried but then sometime he is just plain scared. Recently i started taking his hand to calm him and now he asks me to hold his hand, hes scared, then a minure later he says I’m not scared anymore, Mommy! Wow. This post gives me much to think about. Wow.

  12. Hi Jess I have been following your blog for awhile now. I have a 6 year old daughter who is autistic and verbal. I was wondering if you are willing to answer some questions for me through email? I would love your insight on some things.

    Thanks in advance,


    • Diana, Thanks for reaching out. Unfortunately, I just don’t have the bandwidth to answer individual emails. If you’re comfortable doing so, I’d suggest posting on the community support page. This is exactly its purpose! All the best, Jess

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