life is why

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{image is a photo of a mirror being held up to the viewer by a woman’s hands} 

I’ve typed and deleted the beginning of this post six times so far. I’ve decided to stop trying to come up with a beginning and just start in the middle, so here goes.

A lot of you were angry last night. You were hurt by my words or, as some put it, felt shamed by them. I can’t decide which is worse, but I know that neither is something that I want to happen here. That’s just not what this place – or I – am supposed to be about. Here is what I’d written:

I just read an article entitled What Parents Of Autistic Children Will Never tell You.” It left me feeling profoundly uncomfortable. While some of it rang true for me, much more of it didn’t. Most of all, i feared my daughter would read it someday and ask, “Is this how you felt about being my mom? Sad, lonely, isolated and utterly worn out? Because that mom said that’s how you felt. She said that’s how ALL parents of kids like me felt.

We are all different. No two of us experience this journey in exactly the same way. Yes, subgroups of autism parents have strikingly similar joys, challenges and needs. But we might very well internalize them very differently.

My point? Parents, tell your stories. Encourage your children to tell theirs in their own ways. The more perspectives we can all learn from the better. But when you do speak publicly, I’m begging, speak for yourself, not me. Unless you’ve talked with me at length and I’ve then given you my permission to share our conversation, you don’t get to tell the world, which includes my child, how I feel about being her mom. Because you clearly don’t know how I feel.

As I sit here in the toxic discomfort of misrepresentation, I can’t help but think of my sweet girl and all of our autistic friends and lament just how intimately the must knowing this feeling. And it sucks.

I shared how I felt about something that I’d read, as I do. I thought that I explained pretty clearly where I was coming from, having said explicitly that I encourage everyone to tell their stories because we need to learn from as many perspectives as possible. I was frustrated and confused when it seemed that that message was obfuscated entirely by a sentiment that I wasn’t at all intending to project – that somehow the author’s feelings were, in and of themselves, shameful. I promise you that that was not what I set out to say. However, when there are scores upon scores of comments interpreting it that way, I have a responsibility to examine why.

I was asked in an interview the other day if there are any particular conclusions to which my readers jump that I wish they wouldn’t. I said, “Writing for public consumption is essentially handing readers a springboard to conclusions. I can’t really get upset when they jump.”

That said, even though my first reaction last night was, and to some degree still is, to get defensive and shout that it wasn’t what I meant, I’m the one who wrote the springboard. I need to accept ownership of where it led.

I understand how it might feel as though I’m damning the author for her feelings. At the very least, the way in which I insist on distancing myself from her experience is emphatic enough to make the leap seem pretty reasonable.

For the record, I’m not condemning her for feeling what she feels. Her feelings are valid. I’m a firm believer that all feelings are valid. How we act upon the might be up for debate, but how we feel them shouldn’t be.

When I said that I was experiencing “the toxic discomfort of misrepresentation,” I did not mean the discomfort of being portrayed as having toxic feelings. Those two things are very, very different in my mind. I cannot deny however, that my saying the former might imply to some that I feel the latter as well. I don’t, but I get it.

Of all of the comments last night, there were a couple that really got to me. But this one in particular wouldn’t let go.

Jess – the connection is here: “But when you do speak publicly, I’m begging, speak for yourself, not me.” Rather than coming at the author’s article from the perspective that she’s trying to convince readers of a universal experience, come at it from the perspective that the “we” is intended to catch in its net those parents for whom the words do resonate and maybe – just maybe – a person who will judge a little less and help a little more the next time after reading. I think that perspective makes the article not at all about parenting Brooke (or my daughter) and more about the challenges of being the author.

I’m not meaning to argue with you at all, Jess. I am thankful for your voice, even if I don’t always agree, and I appreciate the dialogue. Just some food for thought. ❤

Food for thought, indeed. This:

Rather than coming at the author’s article from the perspective that she’s trying to convince readers of a universal experience, come at it from the perspective that the “we” is intended to catch in its net those parents for whom the words do resonate and maybe – just maybe – a person who will judge a little less and help a little more the next time after reading. I think that perspective makes the article not at all about parenting Brooke (or my daughter) and more about the challenges of being the author.

This is the truth that stopped me. This is what I ask that we all do every day – use this God-given theory of mind that I am convinced that we all possess to see the world from a different perspective. I wasn’t doing that. I thought I was, but I wasn’t.

You see, while I was busy complaining about being misrepresented, and worrying about how my girl would perceive someone else’s pain, I wasn’t remembering what it felt like to simply need to say it. To say, “I’m hurting. This is hard. I need someone to see that and acknowledge that. I need to know that I am part of something bigger than myself because feeling alone in this is killing me. And I need that support in order to be able to support my child.”

But when I stop to listen, to sit quietly without filling the hard silence that true introspection demands, I remember.

I know what it feels like to write something that represents a moment, not a philosophy. A moment of frustration, of overwhelm, of need, of fear. God, I remember the fear. Scratch that. I KNOW the fear.

When I wrote what I did, I didn’t think about how I might feel as the author of that article had some woman with a Facebook page with 50,000 followers decided to publicly call me out for my choice of pronouns in a time that I was a ball of raw emotion simultaneously seeking community for myself and my child and allowing others to see their truths reflected back to them.

It would have sucked.

There are myriad ways in which we silence one another. Shaming one another for how we feel, whether purposefully or wholly inadvertently, is one of them. And silencing anyone in any way, especially someone whose narrative is so dramatically different from my own, runs completely contrary to everything that I am about.

So yeah, I still wish that the author had used “I” or “some” of “many” instead of implying “all” by using  the universal “we.” Yeah, I think it’s something that we all should remember as we move forward. But it’s no longer the point.

I apologize to Jo and to anyone else who felt shamed by my post last night or who has felt that way in the past. Although it was never my intention, I take responsibility for the fact that it was an unintended consequence of my words. This conversation and all that I learn from it will be folded into everything that I do from here forward, and I am grateful for that.

This is a messy journey, my friends. You’ve heard me say it again and again but it could certainly be no more true than today: Life is an evolution.

I thank you for being here, I thank you for reading and cheering and commiserating and getting angry and getting frustrated and sticking around to make us all better at this business of being human. Most of all, I thank you for holding the mirror to my face when I needed to consider what it was reflecting back.

I’d like to end where I begin. With Diary’s Facebook status from Friday night:

Hours after the curtain closed for the last time on Katie’s musical tonight, the words to the last song are still dancing in my head. I know that they weren’t meant for me — for us — and yet, as one who tells our stories, they feel like a very personal truth.

“If you listen very hard you hear her call us to come and share with her our laughter and our tears. And her mysteries and miracles befall us through the years.

Life is why

We tell the story

Pain is why

We tell the story

Love is why

We tell the story

Grief is why

We tell the story

Hope is why

We tell the story

Faith is why

We tell the story

You are why

We tell the story

So I hope that you will tell this tale tomorrow. It will help your heart remember and relive. It will help you feel the anger and the sorrow. And forgive.

For out of what we live and we believe, our lives become the stories that we weave.”

#Amen

Have a great day, my friends. And please, don’t stop telling your stories.

23 thoughts on “life is why

  1. Thank you. For being able and willing to hear what is being said, and meant, and coming back to acknowledge when something hits a nerve. You are a good person, so glad you’re in our children’s and our corner.

  2. Your original reaction to this article: I didn’t read it as shaming…I thought you were uncomfortable with the fact that she was basically presenting her views as typical for all parents. I thought your statements were valid, did not lapse into shaming…but people reacted strongly because it’s just one of those topics. Religion, politics, and raising kids…there’s really no way to discuss these issues on the internet or in real life without people having extreme reactions, unfortunately. Also, the title of the article you were referring to was, “What autism parents will never tell you”. That positions the article as something that speaks for all or most parents: it’s over-reaching and harmful, deserves criticism…but again, it’s a topic where any reaction of any kind will get a strong pushback. The internet is both the best and worst thing that has ever happened to rational discourse.

  3. I’m sorry that your words were misinterpreted, and yet happy that you are so thoughtful and grown up enough to acknowledge how maybe you didn’t express exactly what you were trying to say. Your ability to delve deeper is what keeps me coming back to your blog.
    Thank you for modelling that, and also thank you for reinforcing that everyone’s feelings are just that. And no one’s experience is universal.

  4. Due respect, this woman wrote an article for the Huffington Post, which has a much wider readership than 50,000 facebook followers.

    In this article, she CONSISTENTLY speaks for ALL parents, and offers only ONE narrative. There is a difference between saying “services are inadequate, families need support, and parents of kids with disabilities can feel isolated” or even “stuff is really difficult for me right now” and saying what she said.

    Many of your readers, I’ve noticed, talk about “judgement.” But it’s not bad to judge. We need judgement to be discerning, to avoid eating poisoned berries, to chose right and wrong. Some things are wrong. Writing an article which claims to speak for all autism parents and that unilaterally defines autism and parenting autistic children as a burden and as pain and suffering is wrong.

    As your readers note, respecting the feelings and perspectives of others is important. So how does her son feel? How do parents who don’t feel wronged by their children’s autism feel when she says that their TRUE feelings are just buried? How are autistic people supposed to feel, reading this? How is a parent of a newly diagnosed kid, looking for information, supposed to feel? How is the general public, gaining “awareness” by reading this, supposed to feel?

    Sharing our stories and speaking our truths are important. But there is a difference between venting to your friend, and writing an article for the Huffington Post in which you position yourself as speaking for everyone.

    Words have consequences. Hers do damage. I was glad to see you speak up.

    • I agree. I do have bad moments. I do worry. But, I think that the media portrayal of the challenges our families face has been very upfront and honest. In fact, it is the prevailing view of what our lives are like (see the Suzanne Wright Op-Ed from last summer). What is often missing is the joy and happiness that we find, and when it is talked about, it’s in the context of “making the best out of a bad situation”, and I resent that. The gentle, polite disbelief that I could possibly be happy because, as everyone knows, autism is the worst thing that can happen to a parent (that was sarcasm, btw).

      There are tough, hard times. Life is not always easy. There is no shame in admitting that, or admitting that you need help. If you feel like your life is filled with never-ending worry and stress, you *need* help. But one of the things that gave me hope (and one of the things that keeps me coming back to Diary and Stimeyland, and others) were the stories that showed me that there were families out there with autistic children with lives that included joy and happiness, even though there are dark, hard days.

    • Cosigned.

      The phrasing of the title of her post DID make an implicit claim to represent the vast majority if not all autism parents.

      I noted to another friend last night that for as much as autistic adults get lectured for “claiming to speak for everyone,” whenever we make so much as a *peep* of protest at misrepresentation, there are some parent writers who have absolutely no qualms about doing it themselves.

      And while, yes, I believe that feelings should enjoy a lower standard of judgment than actions do, that does not make feelings exempt from examination. Because feelings very much do inform opinions and actions and world views, and the frame of reference within which parents are making decisions that have long-lasting consequences for their autistic children’s lives and self-image.

    • Co-co-signed (as chavisory said). I think that I can try and understand both why I agree with others in saying that I read the article and felt incredibly uncomfortable about it, and why others felt hurt and shamed when you spoke about how you reacted to it.

      I wasn’t made uncomfortable with the emotional tone of the article per say; I didn’t sit there thinking “Wow, it’s so inappropriate for her to have negative feelings about being the parent of an autistic child.” I think that would be insensitive of me, and I don’t feel the need to go around feeling-policing people.

      I did feel very, very uncomfortable with the way she discussed her own child, and his needs/life in her article. She described him like he was, in turn, either some disembodied force of sadness–just another thing in the world that isolated her by not providing her with any emotional reciprocity, or a capricious alien intruder, demanding constant attention, but only “letting her inside” when he felt like it. I don’t necessarily believe that she feels this way about her child consistently, or that she intended to characterize him this way in her piece. But that was the way her article described him.

      So I would say that it’s true, we shouldn’t shame people for their feelings, or for trying to get some sympathy and support for those feelings in times of need. However, to do that, you can just say “God, I’m feeling really isolated right now, and I worry so much about the future.” You don’t actually have to describe your child’s needs and emotional responses as the direct cause of your difficulties; autistic or not, your child is a child, and you are an adult. So much of the stigma and fear surrounding autistic children relies on depicting autistic children as non-children, as inherently non-reciprocal, capricious and inaccessible. That article perpetuated that. It made me feel uncomfortable, afraid, and negative about myself. So, yeah. Co-co-signing this comment-thread.

  5. I’ll admit when I read the same article, I thought, “This isn’t my story, or how I feel”. Not to say it isn’t hard, messy, and can be scary. For myself, I choose a different perspective.
    Beautifully stated, and handled with grace, as always, Jess.

  6. I agreed with your post, and didn’t like the article one bit, but that’s just me. I have a hard time with discussions like these, because it often has people drawing lines in the sand, saying “this is where I stand; you must be on the other side.” And I hate that. I hate feeling dismissed for being happy with my life, or having assumptions (and functioning labels) about my kids thrown my way when disagreements happen. I hate that “venting” is so public these days, and I hate that someday my kids will be able to read what’s put online. I hate reading the barrage of “autism flaws” that inevitably get thrown into the comments, the “you don’t have to live with what I live with” comments, the “autism wars” comments. Those comments deeply hurt my feelings (because included was the assumption that nonverbal kids aren’t functional, and that only those who make giant leaps and bounds are worthy of celebration, and if you really loved your kids you wouldn’t be happy about their autism.) I’m raising two on the spectrum, one who is nonverbal, both whose symptoms fit squarely into the description of “classic autism.” And I appreciate your desire to understand everyone’s point of view, and to make everyone feel welcome to express their viewpoints, and that’s wonderful of you. I just wanted to express the flip side of what happened last night- because I read and re-read comments, and left feeling like I don’t have a place within the “autism moms” community, because I didn’t agree with this article, and I don’t like public venting, and I truly, honestly, sincerely wouldn’t change my kids, because I don’t think anything is wrong with my kids because of this disability. I get tired of feeling like there is something wrong with me for not feeling the way this article described.

  7. “This is a messy journey, my friends.” Yes, Jess, you know more than many people how messy life can be. This was a good, and appropriate, apology for an untended slight. (I didn’t see the slight until other voices were raised, but as you have noted it’s a slight nonetheless.)

    Now, let’s get on with the mess of life. I give you my permission to stop beating yourself up. I’m sure many other folks will give you their permission to do the same. I suspect there are a few (I hope not many) whose blood pressure will stay elevated for a while before they can get on with the business of living their lives, and I acknowledge their ire. I wish I could help them quickly come to terms with the situation, but I’m not a magician. The only think I can say is that our kids need us; let’s get back on track.

  8. I didn’t read through most of the thread last night, but can I just say, when Jess described “the toxic discomfort of misrepresentation,” she spot-on described the emotional state in which I spent *most* of my life, and I’m willing to bet a lot of autistic people do, wherein practically nothing claiming to represent people like you is accurate…and is framed in such a way as to tell you “This is the only real experience of people like you. These are the experiences that real people have.”

    When you hear and see that message *constantly*–“These are the experiences that real people have,” and they’re not the experiences you’re having…

    Over time, it makes you feel like, if not really believe, that you are not a real person.

    And the kind of disconnect from the world and from yourself that results…”toxic” doesn’t even really begin to describe it.

    Quite frankly, Jess, I think you deserve less responsibility for the misinterpretation of your words than you’re taking on here. Because this is an experience that autistic people (and disabled, and LGBTQ, and all kinds of people of other minorities) are subjected to *daily,* if not *totally constantly,* and to have someone else correctly identify it and object to the way it’s being done, is a big deal to me.

  9. I hadn’t seen the article until the facebook post about it, and I felt the same way about all of the “we” in the article. I feel very strange when I read things like that because my experience with autism is that my son falls on the “not autistic enough for me to comment” side of things. But I read a lot of autistic blogs (thanks, Jess!) and blogs of parents whose children are facing much greater challenges than we are, and they blog about these things, but they DON’T do it for anyone else. It’s their story, and they share it so that people who are facing similar challenges (or not) can find community, and hope, and understanding and support.

    Jess, you write in a way that, to me, recognizes the different journey’s we are on. You inspire me to do the same when I blog, because my child is so “lightly brushed” and I can’t speak for the challenges of others, but I can recognize them. I write about things from MY perspective, but in my writing, I do my best to NEVER forget that there are those out there whose experience is nothing like our family’s.

    I know it’s not all “unicorns farting rainbows”, but painting every autism experience as a awash in misery isn’t fair either. We can’t just use “we” indiscriminately – you were right about that. It’s lovely that you can go outside your perspective for others and dig so deep into other perspectives, but you were right in what you said.

    I don’t know how we can make sure that people see they have a place at the table to share their challenges and frustrations without feeling like a difference of experience is an attack. And to me, we can’t ever forget (you don’t, and you push us not to) that no matter how hard it is for us NT parents, how hard is it for those who are living it as autistic? We can’t ever forget that when we put our words out there. It’s only PARTLY about us – it’s never all about us.

    • Just my 2 cents on the lightly brushed part of the comment…it comes with its own set of challenges…which I’m sure you know. I have one of each…bug is obviously autistic to anyone who’s ever seen it within 30 seconds so he gets a lot of leniency (that fight for not too much and presuming competence is down the road very soon), but my oldest has more and bigger meltdowns each year bc he is borderline genius and can mostly “pass” so he gets labeled as a bad kid and has too much pressure put on him but refuses most supports because he realizes it makes him different. So guess what I’m trying to say is no matter how heavily or lightly brushed each has its own set of challenges and at the end of the day it’s our ability to keep perspective that makes the most difference.

      • Thanks, yes. Our challenges are minor, so far, for the same reason as your oldest. My DS passes till he doesn’t. The future challenges tickle the back of my mind – I try to keep the “functionality is fluid” concept in my mind and share it with his teachers and team. So far they get it, but we probably won’t be so lucky down the road. Thank you for the words of encouragement!

      • It’s harder on him bc he lives w dad who’s one of the you’re a genius you need to go to an ivy league school on a full ride etc…and I was pretty clueless…I just discovered the adult autistic community about a year ago and was guilty of a lot of the common misconceptions and still trying to Learn. I’m glad I did while youngest was still a preschooler but makes me feel bad he didn’t get the same understanding and help at a young age

      • But you’re doing it now. I think we all feel that way to some extent (oy, childhood). But he knows that you are trying to learn, you’re listening, and that’s HUGE. No matter when it happens, as long as it happens, it’s a big deal and means a lot.

      • Yes–“lightly brushed” can be masking huge internal struggles. Some of the most superficially “almost normal” looking people I know…actually have some of the deepest and most profound deficits. Someone’s surface presentation–even to the people closest to them–may not be reliable.

  10. In no way did I take your reaction and words as shaming. I think you offered another insight. That being said, I commend for understanding and acknowledging your readers perception of your response.
    Everyone IS entitled to their own feelings and opinions and it takes a strong person to realize that an embrace it.
    Thank you so much for sharing your story, it really does make a difference for so many, myself included.

  11. Honestly I didn’t see any issue with your stance on the author using “all special needs parents” because you were very clear on the fact that you don’t want representing how you feel if they have no way of knowing for sure how you feel. My family one felt very much like hers. We don’t anymore, but that time was there.

    The question some of us should ask ourselves, though, is this. Would we have been just as upset and offended if the author wrote about how ALL parents of special needs children have great and happy lives? The author would still be representing how everyone feels without knowing everyone personally or knowing how everyone feels for sure.

    I think the answer to that question would give quite a few people done food for thought.

  12. I so respect your willingness to be responsible for how your communication was received AND I thought what you meant in the first place was very clear. I am pretty vigilant about shaming and I just didn’t hear it in what you said. I agree with your original assertion- that one should be very careful when claiming to speak for “parents of (fill in thr blank)” as none of us can speak for all of us and it’s dangerous in all the ways you pointed out if we do. Blessings to you, as always. xoxo

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