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{image is a graphic that I made last winter. It reads: If you really want to be an advocate, start by listening to the people you claim to be advocating for.}

Yesterday, as a follow-up to a post from the day before, I transcribed an old blog post here called Sitting Out. That post inadvertently hurt a lot of people. And not just any people, but the autistic activists whom I so greatly respect and whose perspectives I so deeply value. They are my daughter’s peers, her mentors, and, in many cases, my friends. Helping to ensure that their voices are heard and respected is my life’s work. When they speak out to say that something or someone is hurting rather than helping them in their fight for, as I said in yesterday morning’s post, no less than their most basic civil rights, I listen. And when it turns out that the something that’s hurting is my blog post and the someone that’s thwarting progress is me and I am shown that I am inadvertently contributing to the dehumanization of the very people in whose humanity I am so deeply dedicated to defending, well, it’s time for me to take a deep breath and figure out how to change my behavior.

Today and tomorrow and for as long as it takes to find the words to make the lessons plain, I will be working on doing just that. I say it again and again — this evolution stuff is messy business. For me, much like my beautiful girl, progress never seems to follow a straight line. As I said to one commenter last night, I make mistakes. Sadly, I even make the same ones twice. I progress and I evolve and then I falter again. I wish my process were different. I wish I were better at it. I’m not. All I can hope to do is to keep moving forward, to keep learning, to keep growing, to evolve toward the person that I try so hard to be.

This isn’t a post that I’m willing to throw together before leaving for work this morning. It deserves – and my daughter and the autistic community deserve – far better than that.

In the meantime, I had another post planned for this morning – a craft blog, of all things, but I just can’t post something cute and light while people are hurt and angry. Cute and light will keep for another day.

And while they do, I will be learning, and sharing what I’ve learned here with you. As we do.

Thank you for your patience and thank you again and again for walking this imperfect journey with me.

Jess

Diary’s Facebook status, yesterday morning

It’s 4am. Having finally given up on sleep, I’ve been staring at a blinking cursor wondering where to begin. When writers come to me and say, “I don’t know where to begin,” I always say the same thing … “In the middle, where it hurts.” I suppose it’s time to follow my own advice.

Over the weekend, I posted the following on Diary’s Facebook page:

The other day, I heard a mom say something that I haven’t been able to shake. While talking about her autistic son struggling in school, she said, “I didn’t sign up for this.”

I want to be clear that what I’m about to say is not judgement. It’s disagreement, but it’s not judgement. I don’t (and can’t) judge her because if I’m being honest with you (and myself), I’m fairly certain there’s been a time when I’ve felt, if not said, the exact same thing.

But I did sign up for this. We all, upon deciding to become parents, signed up to parent whomever our children turned out to be. Whether we understood it at the time or not, we said, “Yes, I take full and absolute responsibility for the human being that I am about to create – lumps, bumps, joys, challenges, heartache, pride, doubt and all. Every last bit of it, for the rest of my life. I am going to have a child.”

This is the sacred contract into which we enter upon having children. It is, without question, the hardest job on the planet. It presents challenges that stretch and bend and threaten to break us. And along with them, joys sweeter than anything we might have imagined.

This is parenting, friends. And no matter what it looks like for each of is, it is exactly what we signed up for.

Four hundred some odd comments later, I felt like the message that I was attempting to convey had long since drowned in a chorus of “How dare you judge another mom for how she’s feeling?” and “You have no idea what it’s like to walk in her shoes.”

I was frustrated, and began to wish that I’d left the other mother out of the post entirely and had simply said, “I’ve felt this way. I’ve analyzed it. I’ve come to see it differently. This is how I feel now.”

But I didn’t. And the reaction was therefore mine to claim.

One commenter in particular who kept coming back to further discuss why she took issue with the post, insisted again and again that I was “not owning” having felt this way. I won’t belabor this because we have a lot to get through here, but that refrain became the crux of my frustration. I was baffled as to how I wasn’t “owning it” when I’d said outright that I’d felt the same thing as the mom I’d quoted.

It’s clear that it wasn’t enough to convince people that if there were any pointed fingers in the post, they were equally pointed at me.

On Sunday morning, I went to Diary’s search screen and entered the words “didn’t sign up.” Nothing came up, so I tried again. I was sure that I must have, at some point on this messy journey, said it. Finally I got it. A post in which I’d said to a friend, “What would you tell me if I were saying this to you? That I was pissed at myself for wanting an easier life sometimes – for having days and weeks and hell, even months when I just didn’t feel like I signed up for this?”

I posted it, in full, on Diary’s Facebook page. Above it, I wrote, “The following post is called Sitting Out. I wrote it in September of 2013. It feels important to say today. This journey is not one-dimensional. It’s messy and sticky and sometimes emotionally contradictory. The best we can hope for is to keep learning and growing — evolving — as we go.”

I’m torn as to whether or not to repost it here for the purpose of the conversation. I can’t stand to see the words anymore knowing the damage that they’ve done and the hurt that they’ve caused. Unfortunately, I”m not sure how to have an honest discussion about it without reprinting it, so this is what I wrote:

“There are the days that I see my Holland for what it really is

A breathtakingly beautiful place

A place full of love and compassion

Freedom and camaraderie

And a place where children hurt and mothers’ hearts ache with the impotence of not being able to make it better”

– From My Holland, October, 2010

Friends write to me privately. They are steeped in guilt. And anger. And guilt for the anger.

You see, we merry devotees of the neurodiversity movement are not supposed to be angry. Ever. Or so we tell ourselves. We are supposed to be celebratory. All the time. Or so we’ve decided we must.

Because we’ve got work to do. We need to be marching down the street en masse like a Mexican paranda, clanging our tambourines and shaking our maracas, calling friends and family out of their homes to join us in a raucous celebration of human difference.

But what about the times when our children are hurting? When their siblings are taking on more than their shoulders can bear? When we are breaking?

Must we still blow our horns and throw our confetti? Must we still, even in those moments, plaster on smiles and celebrate what feels just then like a Cracker Jack box of pain in which somewhere, just out of reach, someone swears there is a prize?

Nearly a year ago, I wrote the following.

“This road is not easy. It’s just not. Watching your child struggle is hard; feeling powerless to make it better is abject torture.

Admitting that this brand of parenting is emotionally fraught – that as beautiful and rewarding and exhilarating as it can be that it can also be conversely but equally painful and messy and HARD does not make you a bad parent.

Saying out loud that you’re hurting does not make you an enemy of the autism acceptance movement. It makes you human.

Our children struggle in ways that no child ever should. At times I swear that if my girl could climb out of her own skin she would. No matter how much incredible progress she’s made, no matter how hard everyone in her world works to try to help smooth her path, she still has to fight mightily every God-damned day. She fights to communicate, to connect, to participate, to interact – sometimes just to BE. As hard as it is for her Mama to watch, it’s got to be a hell of a lot harder for her to live. And that kills me.

To say that out loud does not make me a traitor.

It makes me her mom.”

Last night, I wrote this to yet another friend who wrote to me steeped in guilt. And anger. And guilt for the anger.

“I’m also going to remind you that even in the midst of all the positivity, you’re not human if you don’t have moments where you wish to god your kid didn’t have to struggle and all you want to do is tell autism to f@%k itself. That’s the secret that no one will talk about. But it’s what makes us real, and it’s okay. You’re not a traitor for not loving this every minute. It’s hard. But you know what doesn’t help, isn’t productive and is wholly undeserved? Being angry at yourself because you’re angry. THAT’S the cycle that becomes unbearable. And it’s not fair to you – and it doesn’t help him.

What would you tell me if I were saying this to you? That I was pissed at myself for wanting an easier life sometimes – for having days and weeks and hell, even months when I just didn’t feel like I signed up for this? Would you root me on? Hand me the hair shirt? Tell me I was an asshole for being selfish? No. Because it’s not selfish to sometimes wish things were easier – for both of you – for all of you. It’s just … human. It’s what you DO with it that matters.

And don’t forget the pressure valve. You have to slowly let it out somewhere. Laugh if you will, but for me, it’s going outside. Alone. Looking up. All the way up. Follow the clouds up. It works. For me, it’s the reminder that the world is so damned massive. That the sky doesn’t have an end. That you can’t see across an ocean. That as huge and all-encompassing as it all feels sometimes, we are really so small that nothing – no matter how big it feels within our walls – can really be that big. I don’t know, I just find it reassuring. I’m here. You’ll get through the cycle. Look for the beauty. No matter how hard it is to find sometimes, the Cracker Jack box doesn’t come without a prize.

The parade will continue. Once in a while, we all need to sit out, look up and gather ourselves.

Take the time you need, and whenever you’re ready, come on out and shake your maracas down the street.

And then sit with me a while. And I’ll help you find the prize.

My intention in posting it was to say, “I get it. I’ve had those moments. I’ve walked in those shoes. I’ve been that mom.” As I said in the comment thread that followed, “I shared this post to show [my] evolution and to say that the journey is a messy one. That … it’s hard and it’s sticky and it’s sometimes emotionally contradictory and that, as I said in the post, it’s not the feelings that we have, at our best moments and at our worst, in all their human dimension, but what we do with them that matters.

I have had these feelings, and I think that admitting that and talking about how I’ve grown from them shows others that the evolution is possible. And vital. I did sign up for this. And thank God I did. Being my child’s mother and celebrating every part of her has been and continues to be my greatest joy.”

But whatever intentions I may have had were wholly negated in the middle of the post where it said, “you’re not human if you don’t have moments where you wish to god your kid didn’t have to struggle and all you want to do is tell autism to f@%k itself.”

I hadn’t even seen it. I mean, I’d seen it, but I hadn’t seen it.

I know better. I preach better. I write again and again about the dangers of demonizing autism. I plead with my readers to understand that autism is not a separate entity from autistic people. I talk ad nauseam about why it is so incredibly important to hold sacrosanct the unqualified, non-negotiability of humanity.

Yesterday, I found myself responding to comments in which readers were defending my right to express anger at autism with excerpts of my own posts, so I put them up as posts of their own on the Facebook page so that everyone would see them. This was what they said ..

I wrote the following in March of 2013. Since I keep finding myself wanting to post pieces of it in response to comments today, I thought I’d share it here in its entirety.

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The night before last, I took Katie out for ice cream. It was a school night. It was cold. I was toast after a long day of work, fighting off the beginnings of the same cold whose tail end continues to dog her. We had no right, nor any real desire, to be going anywhere. But we had no choice.

She had been coughing through dinner. She couldn’t control it. And her sister, no matter how hard she tried, could not control her reaction to the cough. Brooke was a mess. She was crying. And screaming. And shaking.

I did everything in my power to make it better. But it wasn’t in my power to make it better. Katie had to cough and Brooke’s wiring simply couldn’t process it.

With all of my energy focused on trying to calm the little one, I missed it at first. I might have missed it completely had I not heard the sniffle. Katie was crying too. “What, baby?” I asked.

She shook her head.

“You know it’s not you, sweet girl,” I said. Please remember that it’s not you.”

She shook her head again. “It IS me, Mama,” she said. “Of course it’s me. I’m the one she’s afraid of. I’m the one making her miserable. How could it not be me?”

For those of you who are new around here, Katie is my neurotypical twelve year-old. She is bright as a whip. She’s more insightful and intuitive than most forty year-olds. She gets the joke. She gets people. And still, she can’t process the fact that her sister is afraid of her cough and not of her. And why? Because the message is clear. The cough doesn’t exist without her. The cough doesn’t walk into a room under its own power and upset her sister. But she does. Katie does.

And right now, simply the sight of her scares her sister because she is the one coughing.

You see where I’m going with this, right? It’s like an optical illusion – once you see it you can’t imagine how you didn’t before.

This is why. This is why it’s utter crap to think that we can get away with separating autism from our kids and that we can rail against it and as long as we assure them that we are not railing against them then we can somehow expect them to understand and accept that distinction. No matter how much we may want to believe that it does, the human psyche simply doesn’t work that way. Particularly the most vulnerable of psyches – the ones still developing under our care.

Katie and I got into the car and headed into town. “I just feel like she hates me,” she said. “It’s just so hard.”

I explained that it was the cough that Brooke had trouble with, not Katie herself. She said that she while she KNEW that, it wasn’t how it FELT. And that she was tired of FEELING like her sister hated her.

I couldn’t argue with her. This wasn’t a question of logic. There was no convincing to do. She could follow the thought process. But, as we all know, feelings and thoughts don’t always exist on the same plane.

In one of my favorite posts about identity-first language, Zoe at Illusion of Competence writes the following:

“I was at a conference last summer at which Ari Ne’eman gave an introductory speech, and it fell to him to explain why ASAN uses identity-first language. One of the things he said, which I really liked, was “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.”

No matter what our view of autism’s origins, I think we can agree that it isn’t an appendage that can be taken on and off at will. It travels with our kids. IN our kids. As PART of our kids. And as such, it’s simply not reasonable to expect them to understand that we loathe autism but we don’t loathe them. Or that we hate this thing that afflicts them, but they shouldn’t hate themselves. Because even if we could get them to understand the difference intellectually, we’d be hard-pressed to get them to FEEL the distinction. And after the other night (and last night again and this morning again while Katie was still coughing and Brooke was still screaming), I was convinced that if we continue to tell these kids, through our words (to them, in front of them, [or here on the internet where they may someday read them]) or our actions, that we hate / fear autism, we are teaching them to hate / fear / pity themselves for having it. People do not separate themselves from what they have / how they act / what they feel / how they experience the world. And we as a society don’t either.

For the love of God, Katie had a COUGH – something temporary and fleeting. Something that will, God willing, be gone in a matter of DAYS. A cough – not the filter through which she tastes, sees, smells, hears, touches and perceives everything in her world. Yet because Brooke hated the cough, Katie’s entire identity became conflated with it. Driving with Katie, talking about how she felt, the implications of the moment rushed over me. And the weight of those implications was almost unbearable.

If we keep FIGHTING autism, HATING autism, FEARING autism, talking about the UTTER HAVOC that autism wreaks on us and our families, we will end up with a generation of children who have learned to hate themselves – or who, at the very least, hate things about themselves upon which they have no control or that, if they can control, they do at tremendous cost to their sense of well-being and self-esteem.

I felt like Katie was pleading with me, “Please get this,” Mama. “I’m begging.”

There’s no other message.

I’m not saying we can’t hate the challenges. Of course we can.

I hate that there are things that my child struggles with.

Fine, yes, amen.

(I would argue that it’s impossible to love someone and NOT hate the things that cause them to struggle.)

… but …

“I love my kid but I hate this terrible BEAST that has ravaged her and I will FIGHT it to the bitter end?”

No. Just no.

Because a cough – a god damned ludicrous little cough had my girl feeling rejected and hurt and to blame for the host of angst and pain and fear that she saw in the chain of dominos cascading down around her. Sound familiar? And that was because she couldn’t separate herself from A COUGH.

So when we say, “I love my kid but I can’t stand his spinning / flapping / humming / shrieking / fill in the blanks” what is it that our kid hears? How does that FEEL from the inside out for the child who, by doing those things, is simply being himself?

To one twelve-year-old girl who got just the slightest glimpse of it the other night, it felt like hate.

and …

Sharing one more excerpt of a post that I’ve quoted from today in response to comments and thought worth sharing. It comes from “What My Daughter Isn’t Doing,” an examination of some of the ways in which others characterized her successes. 

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“She is kicking autism’s ass.”

No.

No, she’s not.

Autism is not cancer. Autism is not something that we are working to excise from her body. Autism is part of the framework of who she is. I’ve said this too many times to count, but I’ll say it again: Autism is pervasive. It’s right there in the definition – Pervasive Developmental Disorder. That means that it pervades EVERYTHING she sees and tastes and hears and smells and feels and processes and, yes, thinks. Everything that she interacts with, everything she experiences passes through the filter of a brain wired by autism. As such, kicking its ass means kicking HER ass. It doesn’t make sense.

I heard a story at a conference I attended a couple of years ago about a young man who put a gun to his head. A therapist had thought that some off-the-cuff CBT (Cognitive Behavior Therapy) might help him understand his challenges, so she told him that his autism was a ‘bad guy’ in his head who wasn’t letting the ‘good guy’ (presumably his nonexistent “non-autistic” brain) do the things it needed to do.

So he put a gun to his head.

Because as a literal thinker, he thought it would be a good way to “kill” the bad guy who wasn’t letting the good guy do his work.

The ‘bad guy’ was his brain. His brain was him. Killing the bad guy would mean killing himself.

You can’t tell someone to separate how they exist from who they are.

It doesn’t work.

It’s not real.

He put a gun to his head to kill the autism.

So telling my kid that she’s kicking autism’s ass because she’s doing well?

No.

Just no.

My daughter is kicking ass, period. She’s learning and growing and finding her way in a world that autism complicates for her. She’s learning to mitigate the challenges that it presents by leveraging the strengths that it also offers. She’s learning what she needs in order to do both and, even better, finding ways to ask for it. She is growing and changing and progressing. Skills are coming together as she collects the tools that she needs to grab this world by the balls and make it work for her.”

Read the post in its entirety here … http://wp.me/pNO8N-3N4

Later in the day, I got an email from a reporter asking for a quote on the latest horrific act of filicide in which a mother killed her autistic son. In a very short explanation of the request, the reporter said that she planned to talk lack of services in her article and was hoping to get my perspective. I wrote, “Please don’t fall into the trap of blaming the difficulties of raising a disabled child for the horrific and unthinkable decision to murder that child. Yes, services are desperately lacking, and the conversation is necessary, but so is a radical, fundamental change in the rhetoric around disability that encourages dehumanization and leads to apologies for murder and blaming of the victim for their caregiver’s despicable act because their needs were onerous. No. Filicide is not an act of love. Walking away because you think you might harm your precious child, with whose care you are entrusted, is a far more loving choice. We do need to talk about the lack of services. Families need help. But never, ever in the same breath as murder and certainly never as an apology or explanation for killing one’s own child in cold blood.” 

As backup in pleading for her to help protect our children, I went to search for posts on the topic written by others, then went looking for one that I’d written years ago, following yet another spate of killings. Yes, killings. Of innocent, beautiful children like Brooke. I found the post and scanned through it, the acid building in my gut as I read my own words.

Today I add this …

Every one of us who is or who loves a person with autism has a responsibility.

Autism has its challenges – by God it does. And they need not be sugar-coated nor hidden from view.

But when we speak in hyperbole – when we choose words meant to shock and scare and draw attention at all costs – well, there IS a cost. When we say that autism ruins, bankrupts, destroys – those words do irreparable harm – to autistics in the world today and to those who will come after them.

People are listening.

So please – take care when you speak about autism – about our children.

For my child,

For yours.

And for Rylan, Faryaal and Zainmay – may their souls be at peace.

Amen.

Every one of us who is or who loves an autistic person has a responsibility.
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Words do irreparable harm.
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People are listening.
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Take care when you speak about autism – about our children.
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Those are not a stranger’s words. They are mine. And I didn’t heed them.
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This isn’t a game. This isn’t about egos or hurt feelings. This isn’t a question of semantics or anyone’s right to feel what they feel or to get into a pissing match about, well, whatever they may want to piss about. This isn’t about whether we say things nicely or scream at the top of our lungs. This is about humanity. This is about dignity. This is about safety and survival. This is about my child’s life.
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While it’s never easy to be shown your own hypocrisy, it’s absolutely necessary if we are to grow. To those who told me to stop beating myself up, I assure you that I’m not sitting here flogging myself for screwing up, but rather I’m trying to learn how to stop screwing up. How to actually live my life as the person whom I want to be. That would, of course, be a worthy quest if I were a private person minding my own business, but it’s an absolutely vital one because I’m not. Because I come here to talk about something that I do not, and never will, know first hand. Because if I am to call myself an advocate for my child, I have no greater responsibility as such than to listen to her and her peers when they tell me that I’ve veered off course.
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When I wrote about this yesterday, a great number of people told me to, essentially, “stand  my ground.” This is what I wrote in response …
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A note to those who have expressed the sentiment this morning that this is my blog and I am therefore free to write whatever I want on it — I agree. Of course I am. We are all free to express whatever sentiment it is that we would like to express wherever and whenever we’d like to express it. To those who have said that I am entitled to my feelings and that no one can take them away from me — Iappreciate that and again I do not disagree.But to those who imply that I should “stand my ground,”and not be swayed by those who were hurt and offended by my words, I pose a question…If I were to tell you that Brooke came to me one day and said, “Mama, what you wrote on your blog hurt me. While you have every right to your feelings about me and my life and my struggles, the way in which you chose to express those feelings was hurtful to me and to those like me,” would you tell me to “stand my ground”? Would you tell me not to be swayed by her opinion because she doesn’t know what I live and feel as her mother? No matter how big this community may have recently gotten, I feel pretty confident saying that you would not tell me that. If you would, I dare say that you might be in the wrong place.Autistic people were hurt by my words about autism. Every one of those people is someone else’s Brooke – ten, twenty, thirty years hence. I fight every day for their right to be heard and to drive the conversation about themselves. I can think of no greater hypocrisy than refusing to listen when they’re telling me how the way in which I chose to express myself made them feel.

I protest organizations who will not listen to those whom they claim to support. I will not be guilty of the same.

Thank you for contributing to the conversation, sharing your thoughts, and helping all of us to grow. I hope you’ll stick around to see where it goes.

– Jess

Many of you told me not to apologize. If you know me at all, you must know how unrealistic a command that is. I hurt the people for whom I fight. I cannot fathom not apologizing for that.
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To be clear, I’m not apologizing for what I felt. Feelings are what they are and I have never thought that one should apologize for emotion. But I’m the one who said, right there in the post, that it’s what we choose to DO with our feelings that matters. And by God, I apologize for what I did with them. While knowing better, while having preached the gospel of never separating autism from an autistic person, of how incredibly painful and dehumanizing it can be to say that we hate what truly is an integral and inseparable part of those that we love, by virtue of the words that I chose, I did just that.
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I am not apologizing for publicly admitting that I feel a great deal of personal pressure to not just unwaveringly accept, nor even embrace, but to celebrate autism and all human differences. But I am terribly sorry that I erroneously conflated my self-imposed pressure with the neurodiversity movement as a whole. They are not remotely the same and it does an egregious disservice to the movement to imply that they are. 
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I am not apologizing for saying that it hurts to see my child struggle. It hurts like hell. But I am apologizing for attributing everything with which she struggles to autism. Anxiety isn’t autism. Epilepsy isn’t autism. Bigotry, ableism, ignorance, and lack of acceptance aren’t autism. 
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I am not apologizing for sharing the truth of a moment, but I am apologizing for the incredibly harmful way in which I expressed it and for posting it without the context of a dramatic evolution away from that place.
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I am not apologizing for my imperfect journey. We’re all on one. But I am apologizing, sincerely and deeply, for a misstep which inadvertently, yet no less truthfully, contributed to the dehumanization of those whose humanity I have made it my life’s work to defend.
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I am not apologizing and will not apologize for listening to those people when they tell me that what I am doing is harming them. 
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To those who were hurt by my words, I am deeply sorry. I get it. I hear you. And I thank you for putting yourselves on the line day after day, calling out the same missteps again and again and yet again in the name of what is right. Sadly, I don’t doubt that I’ll screw up again, but I will keep trying.
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And to my daughter, whom I so firmly believe will be able to read this all one day if she so chooses —
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I made mistakes, kiddo. Big ones, small ones, and everything in between. I’m so sorry for every damned one of them. I never meant to hurt you. I trust that you know that. But there’s more to it, sweet girl. Apologizing when we screw up is important, but it’s hollow if we don’t look for the lessons, find the opportunities to grow, and figure out how to do it better as we move along the path. I promise you I will never stop doing all three. For you, for your sister, for all of us. And I promise too that I’ll never, ever stop listening.
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Mama loves you.
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Ed note: I asked folks for links that they thought would be helpful. I’ve included them here. If I missed any that were in the thread, I apologize. Please don’t hesitate to add to the list in the comments below. 
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26 thoughts on “untitled

  1. …and now it’s time to move on. This post,and all those that you incorparated into it, was totally heartfelt. You’re constantly growing. You’re constantly evolving. We all make mistakes. Goodness knows, I’ve made many.

    Love you,
    Mom

  2. As a mom, no as a human you are probably the most deliberately respectful, thoughtful person I have ever encountered. To make a mistake is human. To acknowledge it, and make such a detailed response owning up to it is respectful and mature. I hope that you are able to move forward without holding on to guilt now. You and I and your daughters and all of your readers are flawed, imperfect humans doing our best. And when someone strives for their best as much as you do then it is a gift and something that the rest of us should strive for. Thank you always for your lessons, thoughts and musings. The world is a better place because of people like you

  3. Reading the Facebook comments (and rereading, and rerereading, because this discussion consumed my thoughts yesterday), I am grateful for the explanations of neurodiversity being a civil rights movement, because I honestly had never had it explained to me in such a way before. And I won’t comment on much else regarding the original topic, because much of it made me heartsick. But I would like to comment on something that emerged from your Facebook comments. Ibby, whose words I adore and seek out as much as possible, wrote as a clarifying point that she wasn’t reading through all the posts because her functioning was lower than usual (I’m paraphrasing here). This sentence (which wasn’t even her main point, but rather was an explanation as to why she wasn’t reading all the responses) was like a 2×4 smacking me across the face, because I have been struggling with understanding my son, who also has days and weeks of lower functioning. And if Ibby, who is eloquent and accomplished and smart and talented and so much of what I aspire to be, has moments of lowered functioning, and my child also has days of lower functioning, perhaps I need to reframe how I interact with him, because it’s not necessarily something I need to be alarmed about. After reading that one sentence, I called my husband and we discussed this, and came up with a game plan to ensure we never push our son too hard on days where he is functioning differently than average.

    To have this idea explained outside of scary therapy speak is a gift, and something I desperately need. Jess, I turn to you because I relate to you as a mother. I turn to autistic adults because my children aren’t yet able to communicate what their experience is, and autistic voices give me clarity and help me engage with my children. I need to have autistic people help me understand so that I can relax more, enjoy my children more, not give in to the fear based language that can hang over even the best-intentioned discussions about my kids. I’m thankful for your blog, and your Facebook page, and your humility. I’m thankful for autistic adults who spoke up and pointed out your error. And I’m so thankful that your page is a place where autistic people are free to share their experiences, because it helps me in raising my children. So often I feel lost and inadequate and scared that my children won’t have a place in the world. If nothing else, know that for me, yesterday restored hope in our family, that I can do better with my child, that someday both of my children will be able to stand up to me and others when they are upset, and that grace can be extended through our mistakes. Please know that this blog and community and all who participate in it are so important.

    • To clarify, her words were that she is experiencing levels of relative impairment. I didn’t intend to use the word “functioning” in a negative way. I don’t like functioning labels, and I wasn’t trying to use that word to mean anything related to functioning labels. I myself am functioning on very little sleep this morning. I guess it shows.

  4. With the gentlest of tones….you used a lot of words in this post but I’m still not clear – was the original post to show your evolution and you no longer feel like that? if that’s the case, then I’m not clear on what you’re apologizing for. Evolution is a good thing isn’t it?

    Or…… if you still sometimes feel like that (what’s described in the original post) – and you’re sorry for raising it in this public forum where it’s hurtful (especially with the #@#$ language) – is that what the apology is for?

    Or is it because you just re-posted an old post to show your evolution but you didn’t read it completely, didn’t see the @@#^% language and are sorry you highlighted even though you don’t feel like that anymore?

    Just askin’

  5. I totally agree with TeamWmon! You are the most “deliberately respectful” human being I have had the pleasure of “knowing”… Your thoughtful response to all that has transpired over the last couple of days was nothing less than heartfelt, I hope this will serve to end the “infighting” and to stir up positive conversation on what we can ALL take away from this very important lesson.

  6. In the vein of presuming competence, neurodiversity, and respect for all abilities, I can understand the need to apologize for hurt feelings and mis-steps in postings on the internet. That being said, some of the antagonists during the whole thing were just being needlessly rude and disrespectful. I have disagreed and found exception to many things you post, but I take the (substantially more) good and leave the gray areas. That is not to say that dissent is not appropriate when there is a disagreement, but I saw a lot more flogging than simple dissent. And sometimes the best way to respect neurodiversity is to call people out on their petty and juvenile behavior, regardless of neurology.

  7. …and this is *exactly* why I don’t have a blog about my autistic daughter. No good deed goes unturned. You’re a better person than I am, Jess, for I can barely handle self-critique let alone others’. My gentle advice: stop trying to please /not offend everyone and just be you. Your feelings will no doubt change along the way in this journey we call “being a mom” (autism or not); it’s not hypocrisy–it’s growth.

  8. i was just really frustrated to see so many of the reactions turn petty and hateful. a few people disagreed with you in ways that were respectful, and that aimed at creating dialog. but most of the comments i read were engaging in cheap shaming tactics. i think ultimately, if that’s the path the majority want to take, just shouting down those they disagree with and shaming them…it’s going to push people away and make people avoid dialog, not engage in it. we’re never going to change hearts and create change if we’re treating anyone and everyone like the enemy. i know you felt compelled to apologize, but i just thought the way people reacted was…i don’t know. it was depressing. it can be hard to see a way forward sometimes with all of this.

    • People sometimes disrespectfully disagree with each other when they have passionate feelings running high, which I think can cause all the various neurologically configurated brains to go haywire on reasoning regulation. It is very less useful to characterize only one viewpoint’s proponents as having had to deal with this, because it is inaccurate and also counterproductive. Meanwhile, it did not seem to happen to Jess herself. So kudos on that and may healing come to all.

      • i’m only characterizing one side because it didn’t feel necessary to characterize both. plenty of other people were busy characterizing jess’ comments (even after she apologized once…twice…it ended up being 4 or 5 apologies within a few hours. today? she’s apologizing yet again…to me, felt like her statements were receiving a sufficient amount of coverage). i wanted to step back and think about the other side, try to make sense of what i was seeing as well as my own feelings about what people were saying. i don’t know, this entire conversation left me feeling discouraged, but i get that most are happy with the outcome. part of it is that i have to find some way to understand, accept the way online conversations work. idk.

  9. You are truly one of my heroes. We make mistakes. We look at them, we force ourselves to face our mistakes and do better. THAT is how we grow. …… I think this was a very important “mis-step”. We can all fall into that hole of “blame”. “Fuck Autism.” And by you publicly mis-stepping in that way – we are forced to look at how easily we can “mis-step” as well. Advocacy, compassion, understanding is a muscle. I continue to learn here, that sometimes you have to go backwards to go forwards.

    Thank you for holding your mistake up high, under a shining light to say THIS… this is how easily we falter… this is what we must diligently fight against.

    To not apologize for faltering – that has given the whole message an even clearer validity.

    Keep on rocking on, Jess. God bless you, and your family.

  10. Jess,

    I was going to say that this whole autism thing is hard …but you know that.

    I was going to say that writing a blog about autism without occasionally, and unintentionally, hurting someone’s feelings is hard …but you know that.

    I was going to say that it would be nice if the firestorm would die down and give you some respite …but you know that.

    So what can I add to the conversation? Just this: {{{ HUG }}}

    If you need another, you know where to find me (on FB)

    Art

  11. On the one hand, I don’t think there’s anyone else who is expected to deal with such a broad range of people and opinions regarding autism and autistic people, and I can’t imagine the energy and the emotional toll this must take on you.

    On the other hand, it’s rather incredible that such a wide range of people can find something meaningful and important in your writing; voices who would come together just about nowhere else come together with you. That is an incredibly powerful thing.

    Having a voice as powerful as yours take the time to listen, and to apologize for sharing something that caused unintentional hurt, means a whole lot. Most people never encounter someone as classy and humble as you in their lives; now 100,000 people have seen you engage with autistic advocates as adults with valid opinions, and the effects of that are likely immeasurable.

    MAY SOMEONE BRUSH YOUR FUR SO YOU ARE HAPPY LIKE MARU: https://www.youtube.com/watch?v=szEy9YhjHRg

    love.

  12. Jess…so VERY VERY proud of you. Thank you on behalf of my child and our Autistic friends. Growth and learning…stumbling….but progressing….always.

  13. I really like you, Jess. Not very many people in life really listen, especially when it isn’t necessarily what you want to hear. I think you do and that is a rare, wonderful quality. ❤

  14. As a parent of an autistic child and also being autistic myself (Aspergers) I have never been offended by anything you have said in your posts. I have loved hearing all your tales of Brookes small victories, and have always found your opinions to be very thoughtful and well considered. Sure you might make mistakes now and then, but don’t we all? The point is that you are always ready to admit that you think you got it wrong, not that I found anything to get upset about in your post.

    I find that in these type of discussions it’s the parents who are more outraged than those who actually have autism. Ask someone with autism how they feel about a mother saying ‘I didn’t sign up for this’ and you will get a different response altogether, because to us such comments are indeed hurtful. I don’t want to be made to feel as if I’m some kind of burden, and I don’t want my children to feel that way either.

    You at least always have the grace to stop and think about how your kids feel and how others on the spectrum feel, so many others don’t do that. Don’t stop doing what you do, and don’t get too upset about the odd misstep. When you have autism you make missteps every day of your life so we tend to be more forgiving of genuine mistakes by people who genuinely care.

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