the shape of hope

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Brooke in one of her favorite shirts

Yesterday, I wrote a post about hope. About how important it is to believe in the unlimited potential of our children as they self-actualize into the incredible human beings that they, well, already are. The comments on the post were incredible. I even posted a piece of one from a fellow Mama on Diary’s Facebook page, because … this …

… Like how amongst us all belief is a bit of a currency that we give and receive in accordance with who needs it and who’s got some extra to share. Like how if life hadn’t brought me a parenting experience that was about believing I might have made it about expecting and would have missed out on so damn much magic.

I know, right?

If you haven’t seen the rest of the comments, I’d urge you to click back and check them out. They were pretty damn incredible.

But there was one that came in last night, long after most of the others – one that spoke to the nagging fear that I have every time that I talk here about hope for our kids. The little voice in the back of my head that says, Are you sure that you’re being clear about what that ‘hope’ needs to look like, or, more importantly, NOT look like? 

The comment popped up on my phone while I was sitting at an excruciatingly long red light. I took a quick glance at it and my breath caught in my throat. Because I saw this:

As an autistic person, I know how difficult it can be to hold out hope that someday, somehow, someone you love will speak your language back to you.

When the light turned green, I drove about fifty yards and then pulled over to the side of the road to read the comment in its entirety. It couldn’t wait. By the time I’d finished reading it, I wanted to hug its author. She had plucked the nagging fear from the depths of my brain and given it a voice. A reasoned, thoughtful, yet urgent voice. And it wasn’t a voice like mine, guessing at this stuff from the outside in; it was a voice knowing it from the inside out. Right there, from the side of the road, I wrote to the comment’s author, Emma. I asked for her permission to publish her words here as a stand-alone post this morning. Because this needs to be heard. I am so grateful that she agreed.

As an autistic young adult who’s been reading (and enjoying!) your blog for a while now, I feel like it’s impossible for me to exaggerate how important I think your insights here are. So I decided to write an absurdly long comment detailing exactly why the way you talk about this is awesome:

As an autistic person, I know how difficult it can be to hold out hope that someday, somehow, someone you love will speak your language back to you. And it is similarly valid and important for neurotypical parents or teachers to feel hopeful about their relationships with others (autistic or not). So, to parents: Yes, please; feel hopeful for your child’s future. Believe that, given the appropriate accommodation and validation, your child can be a happy, fulfilled individual. Believe that they are capable of unlimited, unpredictable growth.

But, at the same time, please, please, please examine the sources and the structure of your hope. Do you believe that typical behavior and communication reflect the “natural” conclusion of a universal process of growth? Do you only consider a change to be “growth” if it results in your child acting in a way that you find more relatable or comfortable? The reason it is important to “presume competence” is not because all people are capable of displaying “competence,” given enough time and encouragement. We must presume competence as a way of acknowledging that competencies exist independent of our ability to identify and interpret them.

Please, do not presume that all people are capable of social “competence” given sufficient support; instead presume that all people’s sociability is somehow a competent one, even when you do not understand it. Please, do not presume that all people could learn to converse “competently,” given sufficient support; instead presume that all people do converse, even when their responses or reactions fall outside of communicative norms. It is important to spread the kind of hope you talk about, a hope-as-presumption-of-intrinsic-awesomeness, because differences are valuable and “normal” definitions of personhood are damaging. But it’s especially important because the easiest way to isolate and silence atypical people is by assuming that the natural, universal consequence of any person learning and developing is that they become normal/more relatable to you.

When a parent talks about how they still hold out hope that their child will someday spontaneously have whole spoken conversations about social stuff/feelings with them, even though their doctors prognoses are like absurdly terrible, I am conflicted. Hope and optimism are not incompatible with prejudice and narrow-mindedness, and the combination of the two is especially complicated to discuss. I can want parents to experience the sense of engagement they seek with their child while simultaneously rejecting what those parents want their child to become. This is a kind of hope I cannot live without; that anyone, any parent, any child, is capable of building something with others…even if at first, it might seem impossible.

When I think about parents or teachers hopefully working, and waiting, for a child/student to “develop” normalcy, I am struck by the impossible task that child has been given. Nothing they do or say will mean anything until they are judged to have communicated what they mean. I can say, from personal experience, that it is impossible to communicate with people if their only response to my language is either to ignore it, or say that it is incomprehensible. Assuming your language is the only possible language and, therefore, the natural end product of human development is just another way of assuming that anything you don’t understand doesn’t matter (or even exist). Both assumptions are, in my opinion, indefensible.

Any two people who speak different languages must presume the other is trying to communicate, despite their incomprehensibility, in order to start building a third language they can share. That respect, and acknowledgement of valid difference, will always be a pre-requisite for building a language with other people. And building a shared language is always a necessary first step if one person hopes to become fluent in the language of another. Your post (and your whole blog, honestly) are a damn great example of what building a shared language can look like.

Now you know why it couldn’t wait.
.
Thank you, Emma. From the bottom of my heart (and the nagging voice in the back of my head.)

29 thoughts on “the shape of hope

  1. I think Emma’s words need to be handed out at every IEP meeting, to every teacher, doctor and parents of newly diagnosed children!! She really put into words something I’m sure so many children wish they could so eloquently relay themselves. Thank you so much for sharing it with all if us!! And THANK YOU, EMMA!!

  2. Wow…one of the most amazing and touching things I’ve ever read. I will be sharing this with the teachers at my school. We all need to read this daily. Thanks for sharing. And thanks, Emma, for such honest insight!

  3. I am in tears. Absolutely agree with Joeysmommy. Emma expressed beautifully what I have felt but have not been able to put into words. Printing this out for my principal, sped director and the teacher’s room.

  4. There have been a handful of posts that I have read these past few years that change everything for me. This is one of them.
    Thank you for sharing your words, advice and insights. And thank you Jess for this space for the shared language.

  5. This spoke deeply to me, so much so I need to retread it and chew on it. And yeah, Joeysmom,,,,everyone would benefit from reading this.

  6. As a parent with an autistic child I love this article and comment. It gives me hope!! I believe in my child whole heartedly and never want her to be “normal”…..

  7. This here? This is internet magic! Thank you Emma for sharing your insights and articulating so perfectly what so many of us need to hear. And thank you, Jess for creating a space where this kind of magic can happen.

    • “We must presume competence as a way of acknowledging that competencies exist independent of our ability to identify and interpret them.”
      hear that? it is the sound of civil rights being heard. if it please the court, i would like to quote some of these self evident truths in my new book on neurodiversity. proud to be a part, autistic b

  8. This post brings me back to a blog post i wrote in 2012 for the Hope relay…

    My son “MB” is autistic, and (even thought I hate most of the descriptions of people living on the autism spectrum) for the sake of this post I will use generalizations (forgive me, its easier and right now I need easy), he is considered moderate to severe.

    My son will never graduate high school, never have a real job, never live alone. He is incapable of holding a conversation, or express his thoughts or dreams.

    When I was pregnant, I had some many hopes, and dreams, but now I just don’t know.

    And then I look into my son’s beautiful blue eyes, and my heart melts. I know in someways I am lucky. He can talk, and express basic wants and needs. He is a caring and loving young man

    When I first started thinking about what I would write, it almost felt like an absence of hope, but as I watch my son and I look at the things he is able to do. Things that against all odds, he is now able to do, and I think it really is a hope for hope…

  9. “When I think about parents or teachers hopefully working, and waiting, for a child/student to “develop” normalcy, I am struck by the impossible task that child has been given. Nothing they do or say will mean anything until they are judged to have communicated what they mean. I can say, from personal experience, that it is impossible to communicate with people if their only response to my language is either to ignore it, or say that it is incomprehensible. Assuming your language is the only possible language and, therefore, the natural end product of human development is just another way of assuming that anything you don’t understand doesn’t matter (or even exist). Both assumptions are, in my opinion, indefensible.”

    OMG, This!

  10. This is really great. What’s interesting is when I first read this I thought “that doesn’t apply because my son can talk”, but Emma made me think more deeply. Yes, my son can communicate “typically” – but his experience of the world is different, and even his “typical” communcation isn’t entirely typical. And I need to remember that.

    It’s about their experience from the inside, and us working to understand from the outside, so we can be together in the joy in the middle.

  11. In many ways, it’s not my children who are limited in communication, but I am the one limited because I don’t share their communication. All I want so desperately is to know them. It is not my job as a mother to encourage them to be like me in order to know them. It is my job as a mother to work towards communication in their way, and hopefully this third language will develop and exist so that we can know each other. And my hope for them continues to lie in my desire that they will be happy, and fulfilled, and secure and content. And that I will have a relationship with them, and they will know how much they are loved. Nothing else really matters outside of that. Emma’s words are both challenging and reassuring. Thankful for her today.

  12. “We must presume competence as a way of acknowledging that competencies exist independent of our ability to identify and interpret them.” THIS is what I have been trying to hammer home to my son’s school teams year after year. I think this year’s team is getting it.

    And this– “When I think about parents or teachers hopefully working, and waiting, for a child/student to “develop” normalcy, I am struck by the impossible task that child has been given.” This is the thing which causes me to yell at interns in our OT’s office or school staff (not on Nik’s team!) who DEMAND a specific social script from my son regardless of *his* needs and wants instead of meeting him where he is. *sigh*

    Thank you, Emma, for this most excellent comment and for giving Jess permission to share it. 🙂

  13. Emma, thank you for your beautifully articulated post. Even though my son doesn’t speak I feel we’ve always shared a language together, and that’s gotten us through the most difficult times. And Jess, just had a chance to watch the solo video. Brooke’s progress in the last four years is nothing short of amazing. What truly shone through was her absolute confidence. Bravo to Brooke!

  14. Reblogged this on Spectrum Perspectives and commented:
    This post follows extremely well with yesterday’s post [Self-Awareness]. The focus is on OTHER-awareness, the expectations we bring with us into communication/relationship, and the pitfalls that can come when we are not aware of the innate bias we bring with us.

    As one commenter says:
    “We must presume competence as a way of acknowledging that competencies exist independent of our ability to identify and interpret them.” THIS is what I have been trying to hammer home to my son’s school teams year after year. I think this year’s team is getting it.

    And this– “When I think about parents or teachers hopefully working, and waiting, for a child/student to “develop” normalcy, I am struck by the impossible task that child has been given.” This is the thing which causes me to yell at interns in our OT’s office or school staff (not on Nik’s team!) who DEMAND a specific social script from my son regardless of *his* needs and wants instead of meeting him where he is.”

  15. Yes, Emma, thank you. My HOPE for Hunter is for happiness and acceptance. He is an amazing kid and has so much to offer the world … a unique and wonderful perspective that I sometimes get to share. I like your comments about a shared language. Hunter is 19 years old (20 next week) and many people have commented that we seem to have an unspoken language. His non-verbal language and cues have become strong in my eyes, if to no one else. I only hope and pray that someday he can have others who understand him as well and appreciate all he has to offer.

  16. Gorgeous! Thank you, Emma. I am learning my son’s language….I’ll be fluent one day :))) We must build a bridge to each other. I was an ESL teacher for many years and I always tried to find a way in….so somehow I will find a way and learn his language.

  17. This life, this experience of living with autism, in multiple glorious expressions…in myself, my spouse, our parents, our children…has been a journey toward becoming a better parent, a better member of the autism community, and a better human being. I can now look back and see my evolution. From bewilderment to comprehension, fear to confidence, lost to found. There is so MUCH to learn. And there is even more to UNlearn. (The latter is so much more difficult for me.). I read a lot of FB threads/pages and blogs. I read a lot of books. I talk to therapists and counselors and teachers and doctors, and I am flat out overwhelmed, as I make endless choices, hoping and praying that I am making the right decisions for those who depend on me. And then I read a post like this. It was truly a true traffic-stopper. For me, it was not new information. It was confirmation that I have arrived in this place…a place of hope that honors and protects the individual. I am surrounded by those who don’t even know this place exists, and who honestly don’t care. But I am so incredibly glad to be here. What Emma has so beautifully articulated is the way I choose to love and live. I am so glad she was willing to have you share her thoughts with us. It is a balm for the soul!

  18. oh my goodness i am sobbing ontoo my laptop! My eldest child has smith magenis syndrome and a recurring theme in my posts is the stranglehold of normal this world places on us in its expectations! I have just read confirmation of this within this post and thank you so much for sharing this! what a post!!!

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