our red line

“We have been very clear to the Assad regime, but also to other players on the ground, that a red line for us is we start seeing a whole bunch of chemical weapons moving around or being utilized. That would change my calculus. That would change my equation.”

— President Obama, August, 2012.

“I didn’t set a red line. The world set a red line.”

— President Obama, September, 2013

“I’m lost in all of this.

All I know, truly, deeply know is that we have to examine our own roles in it. Maybe that’s where I’m focused because it’s what I can think to DO right now and I feel the desperate need to DO something other than – along with – mourning. So that’s where I start.”

— From Untitled, June, 2013, following the murder of Alex Spourdalakis

redline-201x300

There’s been a lot of talk in the news these past few weeks about the ‘red line’ as it relates to Syria’s use of chemical weapons. About who set it, where it lies, who should be responsible for enforcing it. For the purposes of this post, the answers don’t matter nearly as much as the questions do.

Where, as a community of people who are either on the autism spectrum or who care deeply for and about people who are, is OUR red line?

Who sets it? Where does it lie? And who is responsible for enforcing it?

Over the years, I have read blog posts by parents of autistic children that have made me profoundly uncomfortable. Posts that have made me question the judgement of people whom I considered friends. Posts that I viscerally felt described borderline abuse, but which elicited attention and praise for the writer’s “honesty” in baring their (and their children’s) stories no matter how “ugly” those stories might have been. Comments which were enough to make me question my conviction.

I have read posts by parents that made me cringe for their children. Posts that have made me say, “Well, clearly we have a different ideology, so I’ll move on and find a place where I am more comfortable.”

I have read and reacted to posts that have ultimately unraveled friendships.

So where is the red line?

When a mother tells the world in a post that she has, within days of writing said post, contemplated suicide?

When a parent films a child in a compromising position and posts it on the Internet, where it will live far past that child’s youth?

When the sole purpose of sharing the film was to prove how “violent” that child is capable of being?

When a father writes about administering a bleach enema to his autistic child?

When a mother writes about physically restraining and loudly berating her daughter with Asperger’s – in public – for acting … well … autistic, in public?

When a parent says, “I just don’t have the energy to do this anymore?”

When a caregiver photographs her own bruises – and posts them online – for no other reason than to show the Internet audience what her minor child has done to her?

It doesn’t take much to find every one of these online.

I would argue that every single one of them is a red flag.

But are they red lines?

How do we discern the difference between venting and crying out for help?

Where is OUR red line?

Where do we set it?

Where do we move from something making us uncomfortable enough to click away to it making us uncomfortable enough to say something to the person posting it?

Where is our responsibility to each other and, far more saliently, TO EACH OTHER’S CHILDREN to keep them safe, even if it’s, God forbid, from us?

Where do we draw the line?

Where do we allow ourselves to say, “This isn’t okay?”

Another mother killed her two children yesterday. Her son was autistic. Her daughter was not.

Another mother KILLED her children.

How do we make this stop happening?

How do we keep our kids safe?

Because by God, every human being deserves to be safe.

I don’t know how to keep processing these atrocities.

We shouldn’t have to.

HOW DO WE KEEP OUR KIDS SAFE?

Where is OUR red line?

Amended to add:

There is a great discussion around this post on Diary’s Facebook page, clarifying the post itself, making the point (emphatically, I hope) that I wholeheartedly believe that sharing our stories – thorns and all – is vital on myriad levels. Please see yesterday’s post for more on that, or check out Thoughtful, not Scrubbed for even more.

For me, this is about figuring out the difference between sharing / venting and crying out for help. Between telling our stories / honoring our family’s truth and disrespecting / abusing our children. I don’t know where the line is as a community. I don’t know where it is for each individual. I can only speak to where it is for me.

But searching for the line doesn’t preclude having empathy for those struggling to find their own. I DO draw the line at acts of violence. Period. As I said on Facebook in a conversation about empathy for parents who commit these atrocities …

“I think the distinction in understanding lies in the act itself. Yes, we can understand the stress that leads a parent to break. Yes, we can understand mental illness. But I can’t, under any circumstances whatsoever, “understand” reaching the point of harming my child. That’s where my empathy ends. Before that? leading to it? That to me is very, very different.

But when we talk about it all at the same time, it begins to at least appear that we are explaining away the murder of a child because of the challenges in raising him or her and that’s not okay. It’s a very, very slippery slope.”

I hope you’ll join us on Facebook. I think it’s an important conversation to continue.

Thanks to all who have so respectfully shared their thoughts.

J

**

If you ever find yourself entertaining thoughts of hurting yourself or your child, or if you feel that you are in danger from a caretaker and are able to communicate that to others, please, I’m begging, tell someone. 

Childhelp® –  800.4.A.CHILD (800.422.4453)

National Parent Helpline® – 855.4APARENT (855.427.2736) (available 10 a.m. to 7 p.m., PST, weekdays)

US Dept of Health and Human Services Child Welfare hotlines by state (includes websites)

28 thoughts on “our red line

  1. My heart hurts for those children. As a single mom of a boy with Autism, I don’t understand HOW. How does one administer a bleach enema to anyone, especially your special needs child who trusts you for their care????? Perhaps that is the problem, Diary? Perhaps they can’t see their child as “special needs?” I will be reading & rereading this as I contemplate my own answer for stepping up my advocate voice, not just for my son, but for every other child with a “beautiful brain.”

  2. I have been quite upset about the attempted murder of Isabelle Stapleton. Like you I had read the blog of the mother and my reaction was discomfort and worry – for the daughter! I don’t know what to do or say to yet another (and successful) , even double murder. Its all a bit much.
    I have always said we must listen to the valuable input of autistic adults and their concern. I also raise my son in the knowledge that he has autism and that it is OK.
    Today it appeared to me for the first time that he will read these stories maybe one day, the comments and justifications. And he will ask himself if there are people that seriously believe his life is not worth as much as that of others. That is a very upsetting thought.

  3. No. Oh, no. Oh, Jess. I can’t believe it. I don’t want to believe it.
    On Sunday, I went forward at church, and I told them that I needed their help. I have felt it in my heart, for some time now, that I needed to start a Bible study/ministry for the parents/caregivers of all special needs persons (not just of children… offspring/sibling/parents). For over a year, I have tried to create a support group, with little success. I am a Christian, and I finally felt convicted that I was leaving God out of the equation. So, I stood up on Sunday, and I poured out the truth…about the fact that most families with special needs are unable ti go to church because there is no spot for their child…about how these families desperately need a community who would love openly…. about the desperate need for caregivers and parents to have a place to process and vent, but more importantly, gain a type of strength that doesn’t come from within themselves. I told them about the situation with Issy, and that the deepest, darkest fear of every parent (not just those with autistic children) is becoming THAT parent. I told them that we needed to do it soon, because I never wanted to read of another murder. Sigh. So this morning, I read your words. I just said Sunday that I could not do this without a Higher Power. I am speaking for myself, and I don’t judge others beliefs, but I honestly do not know how people survive without God. If not for our church, I would have no support system. They don’t just support me; they LOVE my children. They encourage them, joke with them, compliment them, and, most importantly, treat them as one of their own. I don’t know where that red line is it what to do about it. I cant save the world, but, I am taking a stand for my community, and my church is standing behind me. And I am counting on God to do what we can’t.

    • Lisa, I’m there with you! 4 years ago I offered to start a sensory sensitive children’s ministry just for kids like ours. You are so right! While it didn’t happen then, it needs to happen SOON. Praying for your journey.

    • “and i poured out the truth.”

      oh how i love this.

      please let us know how it goes.

      this is what it takes .. we help ourselves by reaching out to help each others, by creating and fostering community around love and respect and faith.

      beautiful.

  4. Hi Jess,

    For what it is worth (not much) the murder sounds to be about custody (the mother had lost custody of her children and didn’t want to turn them over to the father) than autism. That said, it is so sad to see how quickly the comments on the news articles turn to assuming the murder related to autism. That assumption – that autism provokes matricide – makes me physically ill.

    Our collective red line had to be a lot further into the field of respect and dignity and equality than murder….

    • Our collective red line had to be a lot further into the field of respect and dignity and equality than murder….

      YES.

      A-effing-MEN.

  5. For me, the question is also: where can I draw the line and allow myself to get angry? I’m trying so hard to be understanding and sympathetic and validate someone’s experiences before trying to explain that I don’t agree. At what point is it OK to get angry and say that no matter which place someone is coming from, what they are saying and doing is wrong and abusive? I know I won’t get through to a person like that with such a response, but sometimes it’s necessary to show other people who are maybe a bit on the fence on the subject and maybe not commenting but just reading that NO, DON’T GO THERE, IT’S WRONG AND I’M ANGRY. But I don’t want to give up hope that maybe something I or other autistic adults can say might get through. And yet I don’t always want to be nice about it either. Niceness is not always the right response.

    If something really upsets me, I usually shut up and walk away. Which is the sane choice for myself.

    But I still have a hard time forgiving myself for shutting up and walking away from a blog post which had PICTURES. Of her son’s STOOL. After an MMS enema. There was intestinal lining in his stool. She was killing her child in order to cure him. And posting the results ONLINE.

    I can’t forgive myself for shutting up and walking away. But that’s what I did.

    It’s so hard.

    • Oh, this is such a good question. For me, and this is just me, feelings are NEVER wrong. By definition, they can’t be “wrong” – they’re feelings. So if something makes you angry, so be it. But that’s not really the question you’re asking here, is it? It’s about what we show each other, how we get through to each other, how much we need to hide or at the very least control vs how much we let loose in a passionate response in order to be heard. Which gets us heard? Anger or a reasoned, compassionate argument? It’s so hard. And dear God, the line between doing what’s right for others and self-preservation – it’s SO hard.

      Apparently the word of the day is *hard.*

      • The Ranty McRantyrants I post on my own blog definitely get more comments than the measured, logical ones. 😛

        But I do moderate myself a lot when speaking directly to other people. Especially when, like you say, it’s an emotional subject for them.

      • and here’s the thing i’ve found in this online world of ours .. people LIKE to rant. and they get louder and louder in response to other ranters. and the ranters (on all sides) aren’t really the ones who are going to take it in, chew on it, and consider how it might change their own perspective. they’re just going to keep listening to the sound of their own voice reberverating from blog to blog.

        the ones who are listening often aren’t saying a word. they’re just .. listening.

        🙂

  6. For Issy Stapleton, her Mama “snapped” after her child, at last, was in a residential program that was meeting her needs, and Issy was making progress in reducing the violent outbursts she could not control…then after a year, the family could not afford it anymore. Her home school district refused to provide the program demonstrated to meet Issy’s needs, so the mother had to move with Issy, away from her spouse and other kids, to a district that would provide a compatible program. Is the trigger here not autism itself – for the mother had been a great advocate – but the failure of resources to force districts to provide the program that was demonstrated to best meet her child’s needs? And in this case, that was a residential program? I do not condone what the mother did, but in asking what we can do as a community, maybe we should be advocating more for resources to make school districts comply with existing federal laws to FUND programs that will give children on the spectrum – especially those who are most violent, which is surely the most challenging – a chance? Where was the responsibly of the health insurance company to pay for residential treatment of a child with a mental illness (which ASD is?) Where was the school district that was failing to treat the violent outbursts so that the child could learn, and be let out into society?

    If this child was violent from some cause OTHER than autism that could be mitigated, wouldn’t there have been a bed in a treatment facility for her that would be covered by the government or insurance?

    Even in supposedly GOOD school districts, parents are having to fight too hard to get their child’s needs met. Year after year, it wears you down. The mother is not the only one culpable here.

    • Julia, I don’t know Kelli. I had never heard her name before she tried to kill her child. The day the story broke, I followed three links to her blog. I read just three posts. One was the last one she’d written, another was a link in a mainstream newspaper article to a photo that Kelli had posted of herself with a black eye, used by the paper (and Kelli) to show how violent her daughter was, and the last was an example of Kelli being “violent” while acting out during discrete trials of ABA in which she was supposed to be working on “quiet hands and feet,” which is a concept so widely derided by autistic advocates that the book most recently published by the Autistic Self Advocacy Network is called Loud Hands. One of them also included a reference to her calling a member of her daughter’s team a cunt.

      I’m going to say again that I don’t know Kelli. Before she tried to murder her child, I have no idea if I’d have called her a good mother or not. But I do know that if I had seen those three blog posts, I’d have been concerned on many different levels, or at least I’d like to think I would have been.

      I can’t possibly tell you how much I censor here. How much I don’t write or say or share because it could be harmful to my child or could damage the relationships with those who work with her. Over the years, I’d have LOVED to have vented about lying administrators and people whose egos were more important to them than their students, but I never would because it could ultimately serve to hurt my kid. Pictures of the damage she’s done to her body? Torn skin on my arms from when she was terrified? No. Just no.

      As for culpability – whether or not others failed to provide this family with what they needed – and I have no idea, but I absolutely acknowledge that services and help are hard to find, so for the sake of argument, let’s say they were failed, for me, the decision to KILL HER CHILD and acting on that decision is on that mother’s head.

      That doesn’t mean that we don’t need to fix the system, God knows we do, but, for me, no amount of external pressure can justify or spread the guilt of filicide. It just can’t.

    • Autism is a pervasive developmental disorder (having to do with how the brain is physically structured or “wired”) and is not a mental illness, which pertains to the unbalance (is that the correct word?) of neurotransmitters/hormones in the brain. Mental illness can be a co-morbidity of autism, but they’re not inclusive.

      Health insurances often deny coverage for this very reason – autism is not a mental illness. There has yet to be one definitive treatment for autism, and unfortunately, health insurances base coverage on scientific systematic reviews/meta-analysis. As we all know, one person with ASD is one person with ASD and treatments vary. This has also given rise to quack treatments – parents are too desperate for answers, don’t bother to do their research, and/or pay too much attention to the media. Often, when a parent asks for advice, they get asked “What treatments have you tried?”.

      If you want services to be covered, it often helps to have a mental disorder. There lies the rub. The mental health services are hurting right now due to budget cuts and an over whelming demand for services – layered on top of an already assnine (am I allowed to say that?) health insurance corporation that’s for profit.

      Combine all the above with the Wakefield “no-vaccine” and “Cure Autism” fans, autistics are left standing in a very vulnerable position, especially children and those with no or little speech capabilities. The FDA has come out against using chelation to treating autism as there’s no evidence that it’s beneficial, yet there’s still parents who claim it works. Some children have even died due to chelation therapy and other treatments. Yet, with this perfect storm having been formed, it’s now okay amongst certain groups to harm your child – what most of us would consider abuse – as long as you’re defeating, quashing, or curing your child of this demon named autism.

      Where indeed is the red line? I consider all the quackery treatments as abuse, but I know others call it “Saving” or “Rescuing” their child from autism. As long as that’s okay, then there is no red line.

      As for Kelli, I think she finally believed what others were telling her – that she was the problem (my mom’s even heard that one) – was true and the guilt of that combined with everything else led her to the unthinkable. Yes, what she did was wrong. Except for trying to kill her own daughter, I think she did everything out of love and doing what she thought best (Quiet hands does make me upset, but society is one cruel monster and it’s not quite there yet on understanding stimming – especially of the vocal kind – and it’s yet another line on “What’s acceptable in society to survive without being torn apart by the ignorant” and “This is who I am and how I cope, deal with it.”).

      We’re already on the correct path in advocating that the above treatments are wrong and harmful, and we need to spread like wildfire the concept that special needs moms are NOT superheroes to be worshipped afar from atop their pedestals; they’re human. Autistics are humans. We all make mistakes, feel uncomfortable emotions like anger and frustration (and stop saying that you “hate autism” and go straight to the point you’re frustrated at it, or that aspect of yourself), and be okay and not ashamed for getting the help one needs (ironically, I’ve noticed that even in the autism AND mental illness communities, there’s stigmatism and outright denial that help is needed). That should be the beginning line.

      • thank you for all of this, Serenity. Only one thing i want to address – your question “am I allowed to say that?” – there is nothing here that you are not allowed to say as long as it is doesn’t violate diary’s comment policy, which, my dear, i can’t imagine you doing. perspectives like yours are so important for all of us to here and i’m grateful that you stick around an offer your thoughts.

        xo

  7. http://vimeo.com/74671092 Hey, Jess, I really, really needed this today. I know you don’t have much time and this IS a fifteen minute video. But, I am so glad I took the time to watch it. It had healing power. My heart is over-flowing with pride for this little guy. I saw myself in the mom…should I protect or should I push just a little more. But, that moment they caught on film, that moment when he seemed to realize that he had a CHOICE…I can do this, I want to do this, I can do something to help myself do this. I admit it… I bawled.

  8. You’ve got my head spinning in a bunch of directions right out of the gate with this.
    “Who sets it? Where does it lie? And who is responsible for enforcing it?” I too have read a number of posts that made me uncomfortable. I have assumed different ideology and moved on. The web is a big place, it’s easy to find folks with whom you do agree. This is an amazing thing, but can, with any ideology as you mention, lead to a constant, unconditionally reinfocing chorus of praise when perhaps self examination is more in order. My online life is often in odd juxtaposition with my real life where choices in autism ideology are not as plentiful, where my closest autism mama friends have different ideologies than I do. I am struck by the fact that if they had blogs, I likely would not be reading them. Yet, they have without a second thought gotten last minute babysitters and shown up to sit by my side at a school meeting because I was afraid to do it alone. Because when one of us is in need ideology doesn’t much matter. I don’t know how we join those worlds together better so that unconditional support is there for the asking and we allow people to feel comfortable asking, but we are also pushing each other towards self reflaction and a better understanding of how our words and actions effect others in the community. But, they are good questions to be asking.

  9. It’s always important to know that there is help out there and sometimes you need to actually reach out and take it and not wait for it to come to you.

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