hate

~

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 or in front of 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.

52 thoughts on “hate

  1. Katie is wise beyond her years. Such an important message you’ve written. I have three on the spectrum and I refuse to let them take in any message that has them seeing themselves as less than, broken, or damaged. They have issues and I reinforce that we all have issues, and that’s okay, because they also have strengths and gifts and talents. We are a blend of issues and strengths and there is never shame in that.

  2. I can’t separate BW’s autism from him. It’s a a part of him like his big brown eyes or his delicious giggle. That acceptance was a long time coming. Watching him struggle is the awful part but I also try to keep in mind how far he’s come despite the fact that Diva and SBG are lapping him developmentally. I also can’t teach the girls to hate autism and ask them to accept their brother. That won’t work. You love and accept the whole person. You can’t just take the parts you like.

    I love you my friend for being brave enough to write and share this post.

  3. My daughter was diagnosed at 3 and is now 4 and my son just turned 2. The daily struggles with having a child with autism and their siblings can be so mentally and physically exhausting. Having found your blog lets me know I’m not alone and my feelings are normal. Thank you for sharing your experiences ❤

  4. Wow, Jess. One of your best posts. Ever. Thank you. I finally, finally, finally (FINALLY) get it. Two kiddos, two years after two diagnosed on the spectrum, and one post does it. Thank you. Thank you. Thank you.

  5. This needs to go in the favorites section…in the required reading section for all parents, right after D-day. Autism isn’t bad…it simply is. There are blessings to be found, and there will be very hard days. It simply is. Thanks for the powerful, well spoken post. As always.

  6. Obviously the autism community should be in charge of this decision, but, as a cancer survivor, my experiences lead me in the opposite direction. This is a 6-month check-up day, where I get my test results to see if I can live my new normal for another 6 months or if I have to book another tour to hell. I hate cancer. With all my soul. I know the difference is that cancer is considered a disease and autism isn’t. But it is my genetics that made me vulnerable to cancer’s attack. There also may be links between environmental exposures and the onset of both cancer and autism. I hate cancer. I hate what it has done to my family, to my spunk, to my body. I hate that my then 12-year-old son felt he had to be perfect, shoulder the burden, be older than his years, only to rebel at 17 and act the 12-year-old fool when his own future is on the line. Cancer is a genetic enemy. It is a part of me as much as my blue eyes are. I will not make friends with it. Because, for me, the alternative is to blame myself for all this, my health-conscious, organic-eating, breastfeeding, exercising self who, despite following all the rules, managed to get cancer anyway. I am not trying to change anyone’s mind here, and know these statements have probably waded me deep into a controversy I don’t fully understand, but just wanted you to know that trying to not hate autism is a pretty big undertaking. Because fighting and hating cancer is what I do. I kick-ass, mop up the floor with cancer, and my family battles right along-side. All I can say is be kind to yourself, as you are attempting a mighty big thing here. As a Christian, I know I am called to love my enemy, but I will never love cancer. The hate will be there, it will always be there. To live, I need to find a way to channel it in a positive way that gives me and my family strength, not guilt. And thank you, as always for sharing your gift with us. Like a life-line, your post has helped keep a panic attack at bay, and I am grateful to you.

    • I appreciate your struggle with cancer, truly, and I wish you only the best. But it is essential to note that autism isn’t cancer, an analogy that comes up all the time.

      Autism is an integral part of the person- the autistic has different wiring that makes the person…different, not diseased. Autistics see themselves as autistic the way gays see themselves as gay (as my gay, autistic daughter would say!).

      What Jess is discussing is that it’s not possible to “hate autism and love the autistic” anymore than it is possible to “hate homosexuality and love the gay person.” OTOH, it’s quite appropriate to hate cancer and love the cancer survivor.

      Best wishes again!

    • But the difference is that cancer is a disease, and in a lot of causes is curable….although not without a tough fight. Autism has no cure…they may learn to cope, but they will always have autism. So apples and oranges….

      • While some cancers are curable, a good majority are not. I guess you could argue that the genetic mutation that made me susceptable to cancer is part of me and cancer is the disease that took advantage of that gene sequence. But I will always have that gene sequence. I’m just really trying to process this, because I know it is important to people I love. I do see your point, I really do. But, one of the reasons cancer gets the funding and research it does, is because a lot of people do hate it so much. My family loves me despite my gene sequences, but I’m sure they would love for someone to come along and fix it. And, it wasn’t until very recently in human history that we did have treatments for cancer, so will this concept change if treatment is found for Autism? I guess because our family has worked so hard not to define ourselves by our various disabilities, I’m having trouble with this concept. Obviously, you don’t want a child to think you hate them. I just don

      • Diane,

        I so appreciate your struggle here. This is tough stuff to wrangle. I think that the biggest problem with the cancer analogy is that cancer is a disease that ravages the body and, when left to its own devices, kills. Whereas, even if we were to go on the premise that autism is biomedically triggered and ‘curable’ – whatever that might mean, it is still not something that is capable of being isolated – it’s not errant cells that can be surgically carved out of the body.

        An autistic young woman who read this post commented on Diary’s FB page ‘I love this. I myself can’t tell where I end and autism begins. I’m just me.’

        And that’s the crux of it for me. When cancer is excised, we know exactly what’s left behind. Autism is very, very different. It is an entire way of existing. Of seeing and feeling and experiencing the world. It’s a different perspective, a different focus, a different system. So when we say that we hate autism, we’re telling our kids that we hate the way that they see and hear and feel the world. That we hate their perspective, their focus, their wiring, their system. To me, that’s a whole lot different than diseased cells attacking healthy ones in a concerted attempt to kill them. That we can hate. And I’m so glad that you beat it.

        Warmly,

        Jess

    • Hi Diane- I wish you all the best on your checkup day. I do need to reply to your cancer analogy, as it’s made often about autism. However, autism is not like cancer in any way. To go right to the point, a far more accurate analogy is that autism is far more like being gay that being ill, as my gay, autistic daughter would be the first to point out.

      Autism is a lifelong neurological difference. Although the completely discredited vaccine theorists keep trying to tell us otherwise, the enormous preponderance of evidence is that a person is born autistic, lives as an autistic and dies as an autistic. And autistic people grow over their lifespan as all people do.

      However ,all autistics must live in a world that is made for people with a different, neurotypical, neurology. This can be extremely disabling. One example out of *many*: there is no reason that someone must make eye contact to be good at his or her job or schooling. Nonetheless, some of my daughter’s teachers thought that she should be given a lower academic grade because she “did not look like she was paying attention.” This is discrimination- “ableism-” equivalent to giving a physically disabled person a lower grade because he cannot write clearly.

      If we begin to look at autism as a disease, we want to eradicate it. But this is not possible; autism has been with us as a human variant seemingly forever. It has been mis-perceived and misdiagnosed, but it has always been a part of the human genome. And who should we eradicate? The non-verbal autistics? But wait, so many of them, when offered the right technology, have become able to communicate in a profoundly deep manner. People who formerly were thought to be “blank shells” are writing blogs that I learn something from every day. They are expressing thoughts and experiences that they have *because* they are autistic, not in spite of that fact.

      These people are not diseased. They are wonderful.

      – Rob Gross

      • Thank you, Rob. Your reply helped. I certainly don’t think of people with autism as diseased any more than I think of myself that way. I’m much more than my illness or disease. Does it make me less of a person because I am ill?

        Our youngest has Down syndrome, and, with an abortion rate of 90% for children prenatally-diagnosed, eradicating does suck and provides no answers. For the first time in history, research is being done on finding medications that help people with Down syndrome manage the chemical differences that lead to some of the neurological challenges. They are also finding many similarities to Alzheimers, which means many can benefit from this research.

        Implying that autism is like being gay, which did help me understand the point better, means you don’t need or want treatments that could help manage the body’s chemistry or discover what causes the neurological diversity and avoid exposing our children to that. That’s my fear of this approach. I’m all for making the world an easier place to navigate–your eye contact analogy is very helpful. Would love to know more. But anger is powerful. Directed well, anger raises money and demands answers. It can be very empowering. Is it the best to give that up?

        I clearly don’t have the answers, and am debating more with myself than anyone here. I greatly appreciate your feedback and help with my journey.

    • Thank you everyone for your patience and points-of-view. I certainly am a proponent of self-worth. I am very proud of my sister-in-law, who is old enough to actually have received the medical diagnosis of retarded, though clearly on the spectrum. I cringe to think that in attempting to include her in our wedding, I sent her sensory system into overload with a long, satiny, bright blue bridesmaid dress, a fact she complains about even now, 25 years later. (in my defense, it was the ’80s.) But, we keep trying. She is a beloved Auntie, devoted friend, and valued employee. As we know better, we do better. That’s all any of us can do. You all are helping me know better, and I greatly appreciate your time and thoughts.

  7. Jeez, you are on a roll. That was extraordinarily powerful. I am going to have to read it a few times until I REALLY get it but holy crap what I know for sure is that you are RIGHT. And, through divine luck, I needed to hear your words today for a different issue, with a different kid, in a different setting so many thanks for investing time and energy into that post.

  8. It makes perfect sense. Please let Katie know that even in her struggle she helps her sister and others like her. Because of Katie and your willingness to share, I have a better understanding of how to give my recently diagnosed little girl the confidence she needs.

  9. wonderfully wise words. do you mind if I translate your blog to my language (under your name of course)? Also, can I message you in private somewhere? I have some questions, and couldnt find the message button on your facebook page

  10. This is something that so many of us on the spectrum have been trying to hard to say. Sometimes it feels like hardly anyone wants to listen to us.

    I’m glad that you’re saying it too. ^_^

  11. Wonderful, insightful post. I think it is important to differentiate this, just like kids feeling less because of a divorce. It is necessary to make sure we make it clear to our kids that we want to help them with their struggles without destroying the wonderful uniqueness of who they are because of autism.

  12. “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.

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

    The word hate is very powerful. From my perspective, saying that you “hate the challenges” isn’t much different from saying that you “hate the autism.” It’s still a problem as far as the child’s self-image goes, because the word “hate” is still being directed at something about the child. “Hate” is such a visceral feeling, and the word engenders such visceral feelings, that I think that using it for something other than a full-scale atrocity is a very bad idea. If someone said they hated something associated with you — i.e. I love you Jess, but I really hate the lifetime struggle you will have with xyz — how would that make you feel? I don’t think it’s xyz that’s the problem, because as soon as people hear the word “hate” coming at them, they likely aren’t even going to hear what it’s about. It’s not rational, but as you say, people are not very good at separating an emotion coming at them from the reason for the emotion.

    Anyway, I think the word “hate” is a misnomer. From what I know of you, I don’t think that you hate the challenges. I think that they make you sad, that you’ve found them confusing, that you get frustrated with other people’s responses to Brooke, but I don’t think that I’ve ever heard hatred coming out of you.

    • Rachel,

      I thought long and hard about using that word. I agree – it’s visceral and powerful. And the truth is that, sometimes, it’s also entirely accurate. I hope that someday I evolve past it completely, but I’m not there yet. There are times that my girl would crawl out of her own skin if she could – in her own home. Or times when she desperately wants to participate in something and her wiring just won’t allow her to do so, no matter how accommodating the world may be.

      When I sit with my screaming, crying, shaking girl, I am sad and confused, yes, but I’m also angry. I’m angry that things are so damned hard for her. I’m angry that she can’t do what she wants to do without crippling angst and paralyzing fear and the physical pain of sensory overload. And in those moments, I hate that she hurts. I really do. And you don’t see it because I don’t advertise it. Because I hope to God that someday she’ll read this blog and so I therefore consider it ‘talking to her / in front of her’ and because I know that what I write will be read by other autistics and I don’t ever want to be carelessly spilling those toxic emotions on the people whom I love (like you!).

      So I am careful with them. Or I try to be. But they are there in my darkest moments. They are there when my girl suffers and I can’t make it better. And I think that if we pretend that they’re not there, we do a disservice, not only to ourselves, but to parents who are walking this path and, like Ann, above, feeling those emotions and trying to figure out what the hell to do with them.

      I think that I lose credibility if I pretend that it’s all, to use Ann’s phrase, sunshine and rainbows. It’s not. There are absolutely incredible things about autism. My daughter’s love for life and her easy, pretense-free enjoyment of the simplest things is a wonder to behold. I envy her the freedom with which she loves the things she loves – completely, openly, passionately. I’ve never seen anything like it and I credit autism with that deep joy. But so too, it’s hard. It’s really God damned hard to watch your kid tearing herself apart — sometimes literally as she tears at her skin, as well as metaphorically as she cries and sobs and screams. And in those moments, I hate her struggles.

      So, for me, it’s a matter of being real. I’d love to say that it’s something else. That my feelings are more benign, more refined, more evolved. But they aren’t always. And I can’t ask others to follow an example that’s based on a false premise. What I can do, is ask that we all think about what we DO with our feelings.

      This is what I said to Ann, above …

      **

      “I’m all for the sunshine and rainbows but am I the only one that cries my eyes out when we have a particularly difficult moment and my child loses it so badly he can’t recover?”

      Oh, Ann, of course not. OF COURSE NOT.

      If you read back through my blog it will only take about three posts before you find me doing exactly that. And it’s why I said in this post that I think that human nature makes it impossible for us to not hate our children’s struggles. But what I’m trying to illustrate here is what happens when we give into that instinct and allow it to become the accepted paradigm through which we – and by extension society at large – approach our kids. In my opinion, and from what I’ve seen in talking extensively with adults on the spectrum, the cost to THEM is far larger than we see. These feelings of hate / fear / rejection / pity that we as a society so freely hurl at autism become conflated with their identities and they internalize hate / fear / rejection / pity as the not only acceptable but expected reactions to WHO THEY ARE.

      I’m not saying that the feelings aren’t there. Perhaps some people have evolved past them; I know that they still rear their ugly head for me in moments when it’s just too damned much – but, as I saw the other night with Katie, it’s what we DO with those feelings that ultimately determines how our children feel about themselves.

      I hope this makes sense. And I truly hope it’s clear that I am not condemning your feelings or anyone else’s. We can’t always (or ever) control how we feel. We can, however, control how we act on how we feel. And for our kids, I think it’s really important that we take great care with the latter.

      **

      I hope someday I can come to a place where there is no anger, and subsequently, no hate – in any of it. Considering where I started this journey, it seems entirely plausible that I can get there. But in the meantime, for me – and I think for all of us who are walking the rocky road of evolution but have yet to overcome those feelings entirely, it’s about what we choose to do with them out of respect for our children.

      With love,

      Jess

      • A couple of things:

        a) It’s not a question of black-and-white emotions here. It’s not either all sunshine and rainbows or raw hatred. There is a huge amount of territory in between. And I stand by my concern that the emotion is being mislabeled. Raw hatred is something very different from deep, searing pain for something your child is going through. It’s very different form exhaustion, frustration, powerlessness, and rage. A whole lot of emotions get swept up into the word “hate” when “hate” has an extremely specific and visceral meaning. I wish that people could understand the impact of that word. It’s extremely powerful.

        b) I don’t see any difference whatsoever between saying that you hate autism and that you hate the challenges that come with autism. How is it okay to say you hate the challenges but not the autism? They’re both part of your child. Those challenges are her challenges, just as Katie’s cough was her cough, and yet Katie could not separate out Brooke’s upset at the cough from feeling that Brooke hated her. How is Brooke supposed to separate your hatred (if in fact that’s what it is) of her challenges from feeling that it’s directed at her? You’ve contradicted the whole premise of your piece by saying that it’s okay to hate the challenges but not the autism. Hatred is a visceral emotion, and an autistic kid particularly feels it intensely. Emotion always precedes cognition. A child will feel the hatred first, and understand what it’s about second. And the impact will still be there.

        I get that people need to be honest about how they feel, God knows, and not sugarcoat anything. I’m certainly that way. But I’m not convinced that what people really feel is hatred here. If people really do, it’s concerning, because the child will pick up on that, and the impact of that is exactly the premise of your piece. So while it’s important to be honest, what about the impact on the child?

      • Perhaps the word itself is the problem. And I get that. It’s why I typically steer so far clear of it. Though I have to say that for Brooke, it’s still used in the context of not wanting to eat her spinach because she HATES it, so I think the word does not carry the same baggage for her (or many of our kiddos) that it does for us.

        But clearly this is about more than the label on the emotion. This is a struggle for many of us – this dichotomy between loving our children and managing our feelings about their challenges (not their autism, their challenges.) And yes, at times my logical arguments are seemingly contradictory with my emotional ones. Such is the messy process of evolution, at least for me.

        What I’m laying out is the ideal – no visceral feelings. No anger. No hate. And it’s certainly the direction that I’m heading. But it’s an ideal. I’m not there yet.

        And although it might be a rationale that’s not acceptable to you, I do see a distinction between hating the challenges specifically and their EFFECT on her and wrapping up all those emotions in a missile directed at autism itself. To do the latter, in my opinion, dismisses its positives. Dismisses her wiring. Dismisses HER.

        But I don’t know how to not hate the awful parts of this for HER. And I don’t know how to tell other parents that they should be able to lovingly embrace the moments that their children are hurting. Lovingly embrace their children in those moments? Of course. But to somehow walk away from that embracing the torment of a child in a state of suffering is, for me, currently unrealistic.

        In your previous comment you asked how I would feel if someone in my life hated something about me. My husband tells me often that he hates that I struggle with anxiety. And he does. Viscerally he HATES seeing me struggle with things he can’t help me with. And to me, that feels like love. He doesn’t hate me. Hell, he doesn’t even hate the anxiety itself (or if he does he keeps it to himself) but he does hate watching me suffer with it. And what I take away from that is that he loves me and therefore it’s hard for him to watch me hurt.

        I think the crux of this for me is the difference between hating the wiring itself – which I see as destructive and dismissive of all of its other dimensions – positive, neutral, simply different and otherwise, and struggling with its negative effects on my kid.

        In embracing autism completely, my objective is to help my girl to leverage its (HER) strengths and mitigate its (HER) challenges. I don’t think that by acknowledging the challenges and the fact that watching her deal with them hurts I am hurting her. I think I validate her struggles as I love her through them.

      • Perhaps what we “hate” is our own feeling of impotence in the face of someone else’s struggle. The struggle is theirs, not for us to hate or love, but to be able to sit with. Perhaps we have to overcome our own feelings of being out of control and helpless, and hating it, so that our own emotions don’t become emeshed with those we love. And then, we can just BE with our loved ones, in pain.

  13. Thank you for articulating this. I am a relatively new reader to your blog and reading about your experiences is helping me tremendously with processing and communicating my own experiences instead of just holing up. (I have a bright, neurotypical 7-year-old daughter and an autistic 3-year-old daughter.)

  14. This is perfect. You nailed it. Again. This is why autism is a badge of honor for my kids. They see it as superpowers – sometimes their “powers” can get in the way, but usually it’s pretty awesome. For it to be anything else, anything to be hated or feared, would be to hate or fear a part of them, and I could never do that to them. So very well explained. Thank you for this.

  15. from diary’s FB page:

    Monica Powerful message Jess. ((Hugs))
    Unlike · Reply · 3 · 12 hours ago via mobile

    Francine Brilliant.
    Unlike · Reply · 2 · 10 hours ago via mobile

    Joanne Like = “SPECTACULAR” (I’m here too, but how I feel about the post is much “like”ier than that — where’s the “LOVE THIS” button?) Thank you for this incredible insight and way of explaining.
    Unlike · Reply · 2 · 11 hours ago

    Karen A beautifully painted picture.
    Unlike · Reply · 1 · 11 hours ago via mobile

    Allison Wow. Yes, please, link this one with Welcome to the Club. This is something we all need to hear. Often.
    Unlike · Reply · 5 · 12 hours ago via mobile

    Lauren What a phenomenal post! I think this ranks up there with “Welcome to the Club.” I love everything you write, but this post just made this concept so clear to me finally. I think my heart knew it before my brain understood it, but nonetheless I am a logical person who likes a good explanation for everything. Thank you!
    Unlike · Reply · 3 · 12 hours ago via mobile

    Gina Tell Katie thank you for making me get this……. I am in tears because I finally get it! What an amazing girl she is! Hugs!
    Unlike · Reply · 3 · 12 hours ago via mobile

    Julie Perfectly explained! Every time I see a post or hear someone express anger or hatred about autism I cringe or cry.

    I have a child on the spectrum. He can be difficult, but so can his NT sister. Some days are much harder than others. But the same goes for his sister. It is not his fault I do not fully understand autism. I spend a good portion of every day reading and learning about autism.

    I love every tiny thing about my son, even the insanely loud yelling.

    I love every tiny thing about my daughter, even the seemingly ridiculous drama.

    A million thanks for using your beautiful, articulate voice to help spread love and acceptance.
    Unlike · Reply · 2 · 9 hours ago via mobile

    Helen Amazingly well put! Without autism my son is not my son! I wouldn’t know who he was, and that makes it impossible to hate!
    Unlike · Reply · 2 · 11 hours ago via mobile

    Crystal YES! I direct the hate at the external forces…the ignorance in the world, the unnecessary red tape, etc. Autism is as much MY CHILD as his beautiful eyes, awesome smile, and blessed personality. It is his reality.
    Like · Reply · 2 · 12 hours ago

    Kerry This. Exactly, perfectly this. You articulated what I’ve been trying to explain for so long– I can’t say “I hate autism” because it feels so much like saying “I hate Emma.” And I could never say that.
    Like · Reply · 2 · 12 hours ago via mobile

    Amanda *hugs*
    Like · Reply · 12 hours ago

    Andrea DOAM is usually “my” thing. I share bits with others, but it’s my refuge, my guide, my community. But this post. This is for everyone I know, and will go to everyone who loves, lives and works with my kiddos. I finally get it (well, this, at least).
    Unlike · Reply · 1 · 3 hours ago via mobile

    Holly I love this. I, myself, can’t tell where I end and my autism begins. I’m just me.
    Unlike · Reply · 1 · 5 hours ago via mobile

    Jody I don’t even have kids yet, but I read your posts everyday. This one brought me to tears. I hear what you’re saying. Autism or not, kids are hearing what you’re saying and assuming what they will. I’m here for you, as usual and as always!
    Unlike · Reply · 1 · 9 hours ago

    Joanna Excellent Post. Made me think.
    Unlike · Reply · 1 · 9 hours ago

    Lea Saying a special prayer for Katie. Your entire family is always in my prayers but my heart is breaking for her today.
    Unlike · Reply · 1 · 10 hours ago

    Kayleen You stepped on my toes–in a good way! Thank you as always for words.

    BTW my girl now is he proud owner of a “Brooke skirt” (the pink tutu that has filled dd’s every waking thought). She had to sit on her beanbag with the skirt around her “just like Brooke, ’cause she get’s me”. Our family is blessed by your lives. Thank you.
    Unlike · Reply · 1 · 10 hours ago via mobile

    Andrea I hope Katie feels better soon! I totally understand, having 3 kids on the spectrum and 4 that aren’t.
    You always bring clarity to situations I think so many of us go through. I’m so thankful for each and every post.
    Unlike · Reply · 1 · 11 hours ago via mobile

    Kami Very powerful. Something to really think about. Thank you
    Like · Reply · 1 · 12 hours ago via mobile

    Kimberly This one was especially tough for me to read this morning. It’s odd that I am not crying. I usually read your posts with a box of kleenex in my hand. But today, it is like you splashed some cool water on my face and very gently got my attention. I just forwarded to my husband. I’m fairly certain he is crying. And that’s a good thing. He doesn’t let them flow as freely as I do. Thanks for the powerful, yet gentle, message, Jess. XO
    Unlike · Reply · 2 · 9 hours ago

    Tracey Katie, what Brooke was scared of, was that something that had control of her Big Sister, and wasn’t letting her go. She was scared of the cough FOR you. She didn’t want to see you, her beloved Sister, hurting.
    Like · Reply · 9 hours ago via mobile

    Paula Hugs. To all of you.
    Like · Reply · 12 hours ago via mobile

    Tina Wow, just wow~ thank you and both of your daughters too. Prayers
    Like · Reply · 12 hours ago via mobile

  16. I know I’m in the minority here, but to be honest, I feel I DO hate autism and what it does to my child. I hate the behavior that comes from autism that makes his life so damn hard, makes him feel different from others, makes him work harder than most to maybe make a friend, makes it hard on his siblings to be at school and watch him get made fun of. I feel I can still love my child and hate autism. I’m all for the sunshine and rainbows but am I the only one that cries my eyes out when we have a particularly difficult moment and my child loses it so badly he can’t recover? Do I love when this happens? No. Do I blame autism? Yep. I still love my child. And if I had the option, I would take the autism away. Because I really do hate it.

    • “I’m all for the sunshine and rainbows but am I the only one that cries my eyes out when we have a particularly difficult moment and my child loses it so badly he can’t recover?”

      Oh, Ann, of course not. OF COURSE NOT.

      If you read back through my blog it will only take about three posts before you find me doing exactly that. And it’s why I said in this post that I think that human nature makes it impossible for us to not hate our children’s struggles. But what I’m trying to illustrate here is what happens when we give into that instinct and allow it to become the accepted paradigm through which we – and by extension society at large – approach our kids. In my opinion, and from what I’ve seen in talking extensively with adults on the spectrum, the cost to THEM is far larger than we see. These feelings of hate / fear / rejection / pity that we as a society so freely hurl at autism become conflated with their identities and they internalize hate / fear / rejection / pity as the not only acceptable but expected reactions to WHO THEY ARE.

      I’m not saying that the feelings aren’t there. Perhaps some people have evolved past them; I know that they still rear their ugly head for me in moments when it’s just too damned much – but, as I saw the other night with Katie, it’s what we DO with those feelings that ultimately determines how our children feel about themselves.

      I hope this makes sense. And I truly hope it’s clear that I am not condemning your feelings or anyone else’s. We can’t always (or ever) control how we feel. We can, however, control how we act on how we feel. And for our kids, I think it’s really important that we take great care with the latter.

      Warmly,

      Jess

  17. I have been following you blog for a few months, I honestly cannot remember when or exactly how I came to find it other than a link of Facebook. So I suppose I am yet another lurker, a silent but sincere “liker” of posts. But I do know that your worlds have touched me, have resounded in the part of me that is a member of the “club.” I have been moved to laughter and a soul wrenching sympathy by your writing. And yesterday I found myself thinking of the many stories you have told. You see, I am the mother to a miracle baby-one I was told I would not have-my oldest son, a 3 1/2 year old bundle of amazing is autistic. This is not what I thought my first journey into parenthood would be, and yet…I know I am blessed to be the one to protect and guide this amazing soul. But still, I am so worn down by it all-the therapy (OT, PT, Speech, ABA), the advocacy, the extra time, the wondering if I am doing enough, the knowing I have failed in so many ways and trying to learn and be better the next time. And there will surely be a next time. In maintaining all his needs, the needs of my other little guy, my schooling, my home, my marriage…somewhere in there I have become less important, because something had to give. And.,, I was OK with that. Because I am a FANTASTIC mother! But still the bitterness persists, the weariness. Until yesterday, when I got a call from my sons ECI/ PRE-K teacher, telling me my son had had a seizure…Never have I felt such a sickening, all consuming, soul shaking, reality breaking FEAR. He’s OK, or so that’s what they say-they don’t know whats going on-all the tests are inconclusive. Just like they were when he was an infant with insane, out of the blue fevers…My world is rocked. This is not like autism. I saw that diagnosis coming, I knew my child was :”differnt.” And differnt is ok with me, but this thing that attacks my child? That is NOT OK. I am scared and helpless in the face of the unknown, this threat to my child that I can not help him through.But your words have brought me some measure of…feeling that I am not alone in this. And I wanted to just say…thank you for that. It meant the world, when mine was crumbling.

    • You are not alone.

      And even superwomen need to take time to recharge their superpowers. Take care of you so that you can be around to take care of them.

      Holding you in prayer as you make your way through this part of the journey. No way around it – it sucks.

      Love to you and your kiddos.

      J

  18. Pingback: part of her | insulin resilience

  19. I don’t know if this is appropriate, to link to someone else’s blog, and Jess you’ve probably seen this, but I came across Melanie Yergeau’s post today and I keep re-reading it. Apologies in advance if not cool of me…

    http://www.autismacceptancemonth.com/blog/

    “And yet, despite my supposed neurological vomit factory, there was “hope.” Hope that I would someday cease to be me. Everyone wanted it for me. And like any faith-based narrative, I needed only to want it for myself. If I worked hard enough, if I trusted enough in God / gurus / shrinks / parental units / educators / the kids who liked to beat me up at recess / random sages from the interwebs / former Playboy bunnies / the power of B-12 and multivitamin supplements — if I trusted in these things, NT Melanie would arise from autistic Melanie’s ashes, dressed sharply in a cute pink outfit with a denim pairing. She would saunter over to a bar counter. She would order vodkatinis in a sexually suggestive voice. She would know absolutely nothing about the Electric Light Orchestra.”

  20. I have read this and reread it over and over again. And each time I hold back tears and each time I smile because you get it. And tour girl gets it. So does your hubby. We have family members and friends that will probably never get it. But I won’t stop trying to make them understand that although autism may not define everything that is my son, it IS a part of him as a whole. Saying it should be eradicated is sending him AND the world a message that he is the pariah, that He needs to be eradicated. I will not allow that to happen and I will fight to educate those who think that’s how it should be. Thank you Jess. Your words and heart matter to so many. We love you all.

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