unbroken

Wild_Horses01_High_Res
{image is a photo of two beautiful wild horses. Source.}
Please take a moment to read (not skim, but actually read) the following two definitions before continuing.

bro·ken/ˈbrōkən/
adjective

1. having been fractured or damaged and no longer in one piece or in working order.
2. (of a person) having given up all hope; despairing.
3. having breaks or gaps in continuity.

break/brāk/
verb

1. separate or cause to separate into pieces as a result of a blow, shock, or strain.
2. interrupt (a continuity, sequence, or course).
3. fail to observe (a law, regulation, or agreement).
4. crush the emotional strength, spirit, or resistance of.

Yesterday, I read the words break and broken in two vastly different places.

The first was in the introduction to Chris Kyle’s book, American Sniper. “You’re not a cowboy until you can break a horse,” he wrote. “I started learning when I was in high school; at first I didn’t know a whole heck of a lot. It was just: Hop on them and ride until they quit bucking.” He went on to say, “Unlike cattle, I never found reason to smack a horse. Ride them till I wore them out, sure. Stay on them till they realized who was boss, absolutely. But hit a horse? Never saw a reason good enough. Horses are smarter than cattle. You can work a horse into cooperating if you give it enough time and patience.”

Oddly enough, my first thought was of our kids. Of all of the intensive behavioral therapy that we insist is necessary the moment we find out that their brains are wired differently from ours. I thought of the brilliant post by my friend, Sparrow. The one in which she says, “All those years of [classic] ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.”

What is that wild horse – that gorgeous, perfect, glorious creature of God – thinking, I wondered, when it’s ridden into exhaustion – when it finally gives up on bucking its unwelcome rider off its back, recognizing “who is boss.”

Day in, day out, we ride our kids’ backs and crow about the success of the ride when they stop bucking us off.

We break them.

Later in the day, my cousin sent a post for me to read. It was written by a mom of an autistic son, or, as she says in the post, a son who has autism. In it, she says, “He is broken.”

To be fair, the very next line is, “He is whole.” It’s clearly meant to be a poetic device to show us what she sees as the paradox of autism. I get it. But it didn’t sit right.

My cousin asked what I thought about the post. I had a lot to say, but I focused on one point. “I don’t like that she said that he’s broken,” I wrote. “Even if it was in an attempt to say that he’s not.”

“I know,” she said, “me either.”

I wrote, “I can’t imagine reading that my mom thought I was broken.”

She responded, “I think maybe she hasn’t gotten to the part about him finding that out. The other perspective is that I think all kids are broken – in some way – all human beings are. I guess it depends on your definition of the word.”

“Yes,” I wrote back, “but I think there’s a particular sensitivity in human beings that are [routinely] classified that way by society. [As parents, I think we] should be battling that perception, not reinforcing it.” I added, “My dad always said since my tush was cracked, he had the option of returning me, but he decided to take me anyway despite the factory defect.”

True. And true, ” she said. “And that sounds just like your dad.”

bro·ken/ˈbrōkən/
adjective

1. having been fractured or damaged and no longer in one piece or in working order.
2. (of a person) having given up all hope; despairing.
3. having breaks or gaps in continuity.

break/brāk/
verb

1. separate or cause to separate into pieces as a result of a blow, shock, or strain.
2. interrupt (a continuity, sequence, or course).
3. fail to observe (a law, regulation, or agreement).
4. crush the emotional strength, spirit, or resistance of.

When we fail to observe, we separate. When we ride human beings into submission, we crush their emotional strength and spirit.

My daughter is not broken.

She is not fractured nor damaged nor “no longer in one piece.” Her “working order” might look vastly different from mine or yours, but she is in her working order, thank you very much.

She needs help.

A lot of it.

She has challenges.

A lot of them.

But she is not broken.

And I will do my damnedest to ensure that no one, especially me, breaks her.

 

17 thoughts on “unbroken

  1. I like to think that some day things like the internet will be used by moms to build each other up. I understand completely why this particular post could be offensive to some. I even understand why it would put some on the defense. I have not seen the whole post, but I would have to assume this mother is just trying (as is every mother on the planet) to express her feelings. I would be highly shocked if she really intended to offend or put anyone of the defense. I agree 100% that we are all broken (having gaps in continuity) in some way and quite frankly I think that is what gives people compassion towards others.

    • I agree completely. I have no doubt at all that she didn’t mean to offend anyone. Just as I would never mean to hurt my child or her autistic brethren, but nonetheless, have (and, unfortunately still sometimes do) in ways of which I was / am completely unaware. It is by reading the words of and talking to autistic people and other parents who have a different / broader perspective than my own that I have received the gift of becoming more sensitive. I remain indebted to them for reminding me that the way in which I express my feelings, and the forum in which I choose to do so, can and does have a tremendous effect on my child. For me, it is the height of compassion to educate one another about what we have learned. I can imagine no better way to support one another and our children.

  2. When I read your heart, evertime I see you on fb or now here in your blog, you touch my heart and enlighten my mind and spirit. You make me question my own “ways” and just shine light inside of me EVERYTIME. You help me see my own children, (four of them) all of whom are vastly different & still so much alike, and the challenges I “feel” day to day, well you just encourage the tired love everytime you let me walk through your life just this little bit. I think God is using you in this world dear lady and I am just so thankful for you and what you share with all of us. Thank you never feels like enough, but THANK YOU.

  3. Great post.. I spent a few years when my son was 3 ( He is now 17) trying to make him behave how is was supposed to behave ( and yes through the therapy at the time). It was only when he was 7 and feeling LIKE he was broken…that I saw that I needed to help my child/children ( I have 2 who were Dx) discovery THEMSELVES, make decision based on opinions but THEIR ultimate decisions. Now I work with families…and try to help professionals who are still trying to MAKE a child behavior and GET a child to do what they want them to do… to see that self awareness and making meaning that people are not just around to tell them what to do, IS the lifechanging “intervention” needed.

  4. I started to read Diary because I was teaching a child on the spectrum and needed to learn as much as I could. I realised then that my eldest daughter might also be and having read you for many years, was able to listen to her, rather than the diagnosis, when she was finally, at the age of 14 diagnosed with Asperger’s (which is still being given as a diagnosis in the uk). I knew then to use the diagnosis as a way to help her and us start to explore how she perceived the world and how to help her navigate it. The only therapy she has had has been cbt in order to help her learn to understand, recognise and manage her crippling anxiety. I have never seen her as broken, nor as needing to learn to hide parts of herself. As I write this I can hear her and two friends playing on the sims in the living room. I thank you for this gift, to see her as a whole person who sees the world differently to me but not in a broken way, nor in a way that needs to be changed. I need understanding of her, so I can explain how I see the world and give her an insight into NT thinking. But I also need to listen to her, so I can understand her. Between us we can work out how to bridge our differences so she can explain them to others when she needs to and wants to. Already, she sees her Asperger’s as both difficult and a gift. And that is life. And is beautiful.

  5. Jess, is there ever a point where it is permissible to believe that their child–or something about their child–is broken? What if a child is hit by a car and suffers severe injuries? Or what if an allergic reaction to a medical treatment results in brain damage? Is a child only “unbroken” if her differences are something she’s born with, and “broken” if they result from a later environmental exposure? I think the term “broken” has become misused in the autism world, and has taken on a context of unnecessary hatred and rejection that doesn’t really exist.

    For those of us who find that, say, our children’s severe vestibular issues (and resulting NEED to spin for 30 minutes at a time) are directly caused by gluten, is it wrong for us to feel that gluten was “breaking” our child?

    I write this because so many people (NOT you) write that parents who believe that their autistic children are “broken” in any way are horrible, hateful, rejecting, unloving parents who are ruining their poor children. When a parent is trying to navigate the possibilities of addressing real-but-not-obvious-to-some-doctors medical issues, believe me, we get slapped in the face with, “stop trying to fix your child, he’s not “broken,” at every turn.

    Sometimes that hurts as much as seeing our child hurting.

    We already hurt so much from the roller coaster we are on, and from the lack of understanding out there.

    There is nothing hurtful about your post. It’s wonderful that you are finding your own successful path in helping your children achieve their best potential, joy, creativity, everything. I love that about reading your blog.

    But I think the words “broken” and “unbroken” have gotten politicized, much the way the whole field of medicine has gotten politicized.

    So when I see your post about “unbroken,” it hits wounds others have opened. Too many doctors have decreed that the rest of us should not be looking for even the answers we may have already found, and should instead be celebrating our “unbroken” children.

    We do love, accept, and celebrate our children.

    If my child were to break his arm, I would not ignore the damage and celebrate his “difference.” I would want to fix it. Or. Help it heal. Wouldn’t you?

    For those of us who found medical issues resulting in autistic issues–should we not address those? Should we not have looked for them? How is that different from addressing a broken arm? Why is the word “broken” acceptable for a bone, but not for brain function?

    Ask anyone with a concussion, and they will tell you that, until their vestibular, vision, memory, etc damage is healed, they certainly feel “broken.” And so they go to vestibular therapy, vision therapy, and physical therapy to “fix” or retrain their brain. Some even need medication.

    I know, because that’s been the last few months of MY life.

    Yep. My brain was broken, and I needed a lot of help fixing it. And that’s how all the other concussion patients I met felt. Yes, we were BROKEN.

    Incidentally, according to the both the neuropsychiatrists and the physical therapists, there is an enormous amount of crossover between concussion symptoms and autism symptoms.

    So, PLEASE, stop judging others who view things differently. Their situation is different from yours, their coping abilities are different, THEY are different from you. That doesn’t make them wrong, it doesn’t even make them “broken.”

    Just like you, they are addressing things as best they can… in ways that just MIGHT be exactly perfect for THEM, even if they don’t work for you.

    • First, a warning that I’m typing this in a tiny little window in my phone, so please forgive me if it’s not perfectly expressed.

      Frankly, I believe that once we’ve acknowledged that a word comes with weighty, hurtful implications, the conversation about who its “okay” to apply it to and who it’s not it is no longer necessary. In my view, once we’ve decided that a word is toxic, it’s time to stop applying it to anyone, no less the people we love.

      I’m sure that at another time, “broken,” had a very different connotation, but it’s reached a point where I believe, and it seems from your comment that you do as well, that it comes with a lot of baggage. Whatever the process was to get to that place is, I think, irrelevant when it comes to the decision about whether or not to use it once it has.

      Will it be up to our kids to reclaim it? Well, sure. Just as many members of disenfranchised groups find power in using society’s demeaning and hurtful words to self identify or refer to one another within that group. I think reclamation of language can be an incredibly powerful tool when used by the disenfranchised group.

      But when it’s used by those who are not discriminated against in the same way, it’s hurtful without a shift of power, rather, it serves to maintain and reinforce the power dynamic as it is.

      I talk about these words because I believe, based on everything that I have heard from those like my girl, that they are hurtful to her and her autistic brethren. And if I’m going to advocate for her / them, then it’s my job to point it out when I see them being hurt. And to hopefully do it in a way that is still respectful of others’ journeys. But to remain quiet in the face of something that I see hurting her and her autistic brothers and sisters because to speak out would be viewed as judgmental would, I believe, be failing her dramatically.

      As I said to Heather above, I have absolutely no doubt at all that the mom who wrote the post didn’t mean to offend anyone. Just as I would never, ever mean to hurt my child or others, but nonetheless, have (and, unfortunately still sometimes do) in ways of which I was / am completely unaware. It is by reading the words of and talking to autistic people and other parents who have a different / broader / longer perspective than my own that I have received the gift of becoming more sensitive to words that can harm without intent. I remain indebted to them for reminding me that the way in which I express my feelings, and the forum in which I choose to do so, can and does have a tremendous effect on my child, not just now but in the long run. For me, it is the height of compassion to educate one another about what we have learned. I can imagine no better way to support one another and our children.

      We’re all in this together. I believe that we fail not just our kids but each other when we remain silent in the face of that which demeans or dehumanizes or otherwise harms our kids, no matter the intent. I actually think it’s even more important to talk about it when it’s NOT meant to be hurtful, because, my God, I want to know when my efforts to help are doing just the opposite, don’t you?

      As for judgement, I think that’s another word that has come to carry a great deal more baggage than it should. It’s taken me a long time to come to that point, and it’s taken a lot of frustrating work on the part of some dedicated autistic advocates to get me to understand it.

      I don’t stand in judgment of this mom’s heart, nor any other. I couldn’t. It’s not my place. But that doesn’t mean that I don’t evaluate her words and make a judgment call, based on my own experience / evolution / myriad relationships with autistic adults, as to whether or not they are hurting my kid and them.

      After a spate of attempted and successful filicides in the autism community last year, I wrote what I’ve learned over the years about judgment.

      “I have spent a lifetime trying not to judge others. Trying to be open to their perspectives and belief systems no matter how far afield they might be from mine.

      But there is a time to judge.

      A place that demands that we judge.”

      I went on to say …

      “Not judging one another is admirable when we’re talking about race, color, creed, who we love, who we marry, how we choose to identify ourselves. Not judging when men are punching women, parents are beating toddlers, and mothers are killing their autistic children is not admirable. It’s cowardly and it’s dangerous.

      I’m judging.

      I’m judging because if I don’t, I tacitly approve the conditional devaluation of human life. And I’m not willing to do that. I’m not willing to stand by in silence. I am not willing to allow anyone to believe that no matter how difficult my life with my autistic daughter were ever, ever to become, that it would be okay for me to kill her because caring for her is hard. I am also not willing to allow them to believe that it would somehow be understandable if I were to kill her because her life is hard and death would be a better alternative.”

      It has taken me a long time to realize that judgment is not only not inherently wrong, but rather is absolutely imperative if we are to advocate for our children and to support one another honestly.

      That does not mean that we are judging one another’s hearts. But even the purest hearts can wound when they don’t know better. Mine has. And when it happened, it hurt like hell to hear it, but I remain deeply grateful to have been called out so that I was given the opportunity to reflect, do better, and share.

      • Jess, I so truly appreciate your perspective. I really love that you are open and honest with your thoughts and feelings. I love even more that you are a ferocious advocate for your girl and people with autism everywhere. My comment came from the perspective of an outsider looking in. I wondered if you knew the blogger and if you had an opportunity to address the issue with her personally. The thought I had was that there must be a decent chance she follows you and I wondered if she read your post, how she might feel about it. Hurt? Sad? Isolated? Ashamed? I made the mistake of assuming that you had not thought about these same things. Like I said earlier, I misunderstood the purpose of your post and I appreciate the clarity. Thank you.

  6. when things are broken, we throw them away. the broken mirror, the broken toilet seat that pinched me when i sat down, the lid of a pot that shattered when it fell off the stove, the socks that had been worn too many times and darned too many times and got ragged and thin and broken, the broken shoelace.

    some broken things can be mended, the cup that was only a little broken, mended with superglue but the knowledge that it’ll be hard to keep bacteria out of those cracks so i leave it on the shelf and don’t drink out of it. i should throw it away but it was my favourite cup before. i have a different favourite now. most broken things are thrown away. and sometimes old things too even if they aren’t broken. buy a new one because the old one is worn and fussy. when you don’t throw away broken things the landlady yells at you to throw away your trash and don’t keep the trash lying around.

    bones can break and bones can heal and parts of bodies can break and be mended. A broken cup isn’t a cup anymore because you can’t drink out of it. a broken toilet seat isn’t a toilet seat if you can’t sit on it. people stay people even if parts of them wear out or get old or break or don’t work so well. no person should broken and thrown away.

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