Saturday, October 25, 2014

Gratitude for the Participants of the #IamNOTkellistapleton Flashblog

To all those who participated, read, shared, and related to the #IamNOTkellistapleton #WalkinIssysShoes Flashblog, our great appreciation.

Together, we are changing the conversation about Autistic and disabled abuse and murder. From victim blaming to justice for the victims, hard work was accomplished both to defend Issy Stapleton and others like her, and to stop the hateful mindset that leads too many parents and caregivers to harm Autistic people.

We are not Kelli Stapleton.

We walk in Issy's Shoes.

Click on the photo below to watch the video from Newschannel 3, CBS News, WWMT, West Michigan about the Flashblog.

"Autism support groups hoping Stapleton case changes conversation"
Picture of a news anchor, looking into the camera, in front of a blue background. To the right of him is a graphic reading "NEW TONIGHT Stapleton Sentence National Attention" and a logo for Newschannel 3.

Friday, October 24, 2014

Saint Amanda martyr?

Saint Amanda martyr? from Amanda Mills

For the Iamnotkellistapleton flashblog.

This is likely my last  post about Issy Stapleton unless there are new developments and something more needs said.

When I was younger, around 18-19 years old,  I didn’t believe in grey.  Everything was black and white. Everything was either right, or it was wrong. It was good or it was evil. People who didn’t acknowledge just must be confused, or lazy.

In the last twenty years I’ve learned that nearly everything is grey, and really complicated. There are rarely simple answers especially when it comes to human relationships.

Late into those twenty years,  I earned my Bachelors Degree.

One thing I focused study on was family systems theory.  There are many different factors that affect each family, each member of that family and the individual relationships of members in that family in different ways. No single family is identical to another and each individual member of that family experiences family life differently.

There is no typical family.

People say autism is family/marriage ruining. They say that, because it is easier to look for a simple answer to “What went wrong?” than acknowledge its not that simple, or to acknowledge fault.

When an autistic child acts out aggressively its easier to blame the autistic child, or the autism as if its some sort of separate evil entity  than taking a close look at everyone involved and examining the environment and the people in it to see what factors are at play.

If a person  judges, others, or demonizes one person or one thing (idea, practice, set of people) it takes away responsibility for change. People will happily believe black and white, angel and demon, good and evil. Often we  don’t even make a conscious decision to do it, its merely a behavior pattern that works for us.

It is better to look at the facts and factors of each individual case.

It has been suggested that as a mother of autistic children I should understand and empathize with Miss Stapleton’s mother, because I must know, I must understand what autism puts us through.



I am not Kelli Stapleton.

I cannot relate to Kelli.

Let’s look at the facts shall we?
  • Kelli had supports and services for Issy that I never have.
I don’t think supports or therapy are half as important as love, and care. I do not believe in endless therapy that encourages “normal” behavior at the cost of individuality.
  • Kelli blamed autism for her daughter’s aggression and their poor relationship. It’s easier than taking a closer look at her own behavior or considering whether a change in their family environment, was needed.
I do not look for scapegoats.  I try to understand and learn because although over half of this household is autistic, myself included, I understand that we’re all different, and parenting is never easy. I also know its important to look after my own mental health.
  • Kelli posted in words, picture, and videos the  intimate details of her daughter’s life, putting her daughter in the worst possible light. She portrayed herself as martyr and victim.
Saint Amanda martyr I am not, and you won’t find me violating the kids’ privacy in that manner.  Whether or not too much is online, and how exactly to share our lives without oversharing about them is constantly on my mind. I also know that this  martyr/warrior attitude is unhealthy mentally in the long run, both for a parent’s mental health but also for their child. It is unhealthy for how the child perceives themselves and their relationship with their parent.
  • Kelli attempted to murder her child.
That is not ever going to happen.

As grey as the world has become, some things are still wrong.  Trying to murder someone is still wrong. Abusing someone, is still wrong.  Blaming a victim of abuse and attempted murder is still wrong. It is not understandable to me.
  • In sentencing Kelli’s lawyer also  blamed her mental illness for this behavior.
As someone with PTSD and the anxiety and constant low level depression it brings, I find that pretty damn insulting. 

No, I am not her, and I cannot relate.

Thursday, October 23, 2014

You are NOT entitled to a "normal" child

I have always felt that if one decides to have or work with children, it is an honor.  You get the PRIVELEGE of having and/or working with that child or group of children.  You don't get to pick and choose, and you are most certainly not ENTITLED to a particular child.

Therefore, I am disturbed by the trend of certain parents who post online about how they want a "normal" child, and then proceed to provide very personal and intimate details of their children's disabilities, all the while complaining about how difficult said children make their lives.

I recently wrote a blog post about an autistic girl named Isabelle "Issy" Stapleton.  Her mother (unsuccessfully, I'm glad to say) attempted to suffocate her to death in the family van.  Before that, the mother wrote a series of hateful tweets about Issy, including that she wanted a normal child and that she wished she could get a "morning after" pill.

Just the other day, I read about a little boy named Dylan Kelly, who was born with multiple health conditions.  The beginning of the article describes how he loves to come home from school and chase his sister around the house.  Sounds like a happy child, right? Yet his parents state they wish they had had an abortion.

That's right.  The parents say they love him, but wish they hadn't had him.  They had another baby, because they wanted a "normal' child.  They have spent several years engaged in legal action against the hospital where he was born.  I get that having a child with medical problems can be incredibly difficult, but perhaps the parents could have spent this time reaching out to the community for financial and moral support.

When I read about cases like this, all I can think about is how horrible it must be to be those children, to have to know that your parents don't want you and wish you had never been born.  I wish I could take these children and find loving families for them.

Then, of course, there are the people who are always ready to jump to the defense of these parents.  "Walk in their shoes before you judge them," cry the apologists.  I say: Walk in Issy's shoes.  Walk in Dylan's shoes.  Walk in the shoes of every child that has been unwanted.  Walk in the shoes of every child that has been abused by their parent.  THEN come back to me and talk about the shoes of the parent.

You are NOT entitled to a normal child.

This post originally published at:  The Cats Are In Charge.

Issy Stapleton and a Compassionate Response to Violence from Thraen Thraen

Issy Stapleton and a Compassionate Response to Violence

Trigger warnings for ableism, murder, mention of suicide, victim-blaming, and probably other things. (Let me know if I missed something.)
I have been thinking a lot about Issy Stapleton (here is an article, but note that it comes with a trigger warning for victim-blaming and murderer-sympathising)—and about Alex Spourdalakis, Jaelen and Faith Edge, Randle Barrow, Mickey Liposchok, George Hodgins, Daniel Corby, Katherine McCarron, and so many others. The autism_memorial livejournalhas over 180 separate accounts of murder (or, in a few cases, reported suicide) of autistic individuals—mostly by family members, caregivers, and even police. Even that list is an understatement. Crimes so often go unreported or misreported, or when they are reported (accurately), they may never have enough media coverage for the autistic community and our allies to find out. 
Of course I’m sad. Of course I’m mad. Of course there is a very angry, very hurt part of me that just wants to run around screaming and breaking things until this finally stops, until murdering your child (or anyone, but especially someone in your care) is never okay, never justified. I’ve taken so long with this post because I don’t know how to think about this without feeling a blinding rage or overwhelming sadness or both. This sucks.
Kelli Stapleton made a disgusting, inexcusable choice. Nothing justifies attempting to murder your child, okay? Lack of support services for families (and I will just point out that the Stapletons had access to an abundance of support services) does not justify murder. Autism does not justify murder. Nothing ever, ever, ever can justify or excuse this. We shouldn’t even have to talk about this. 
I have a choice, too, and I have been thinking a lot about it over the past few weeks. While the news hurts, while it makes me feel furious and frustrated and desperate and powerless, I have a choice in how I respond and in what I write here. I am not powerless, and wecan change the conversation. In fact,we absolutely must change the conversation.
The first thing we must do is stop othering autistic people and others with disabilities. We need to value and prioritise their (our) voices and experiences. Spend some time listening to (or reading) the voices of autistic people. You could start with these:
On the subject of prioritising autistic voices, I am just going to link you to an excellent masterpost on why Autism Speaks is awful and must not be allowed to speak for autistic people. The tl;dr is that Autism Speaks perpetuates violence against autistic people both directly (see: the bit about the Judge Rotenberg Center) and indirectly (see: their constant messaging of autistic people as “burdens” and so on), and uses money that could be spent on support services and advocacy and instead spends it on eugenics research. Support organisations led and run by autistic people instead, such as the Autistic Self-Advocacy Network and the Autism Women’s Network.
And when we talk about voices, we have to talk about intersectionality and diversity. We have to talk about how the “face” of autism is always white, often male and middle-class when the reality is autistic people come in all races, ethnicities, classes, genders, sexualities, and so on. You might, for example, check out a blog likeQueerability, which focuses on the intersection of the LGBTQ+ and disabled communities. Imagine people, including autistic people, complexly.
Once you’ve gotten a bit of a grasp on the complexity and nuance inherent in our community, it’s time to start educating those around you. Share the voices you find. Push back against stereotypes (even if they seem like “positive” stereotypes—”idiot savant” isn’t a compliment, and it devalues and erases autistic people who don’t fit that “ideal”) whenever you hear someone repeat them. Stand up to any suggestion that violence against a vulnerable population is justified.
And, bloody hell, if you are a parent (or caregiver) and the thought crosses your mind that things might be better if you killed your child (or person in your care), get help NOW. Please stop what you are doing and get help immediately. Call 911 (or the equivalent in your country). Before you reach a point of crisis, get connected with other parents and caregivers for support, such asParenting Autistic Children with Love & Acceptance. And if someone is in any way justifying violence against your child, cut that toxicity out of your and your child’s life. 
The compassionate response to violence is not to side with the perpetuator of violence, nor is it to simply punish the perpetuator (although I am not arguing against punishment for Kelli Stapleton). Compassion goes further: it offers healing and safety to victims, and it fights to end the cycle of violence. We have a choice in how we respond, and if we are to choose compassion (which I certainly hope we will), we must do more with our pain. We must work toward a world without violence and where people like Issy Stapleton feel safe, loved, and valued. 
It’s been a tough few weeks trying to sort through all of my emotions about this, but somewhere, buried beneath all of my anger and frustration and sadness and rage and nausea and fear, I have just the tiniest bit of hope. A different world is possible. I need you to help me make it possible. Educate yourself. Educate your friends. Change the conversation.

(This post can also be found on the Thraen Thraen tumblr here.)

First do no harm from On the Train With Sophie

First do no harm
When the call went out for submissions to the #IamNotKelliStapleton flashblog, I almost decided not to participate. The Kelli Stapleton case has polarized the autism community (even more than it was already) and shattered any fragile peace that existed prior between autistic advocates and their supporters and some (vocal) parents of autistic children. I remained quiet through the initial incident and the first shockwave. I didn't comment on the trial and the infamous dr. Phil interview. I restrained myself when a blogger suggested "we are all Kelli Stapleton". However when I read this article last night, it pushed me over the edge. Those parents who have supported and even identified with Kelli Stapleton up to this point surely cannot now- following an objective, mainstream-targeted, third-party piece of writing, not skewed towards the point of view of autistic advocates (in fact containing some very ablist views, but we've come to expect these from the media sadly) and yet despite all its shortcomings, the image of the character that emerges by the end cannot be viewed as sympathetic. If someone reads it and still thinks that they could be Kelli Stapleton, they should seek some counselling I would suggest.
What has struck me about this case since the beginning is the obvious physical similarity between the victim Issy and my Sophie. Sophie could be Issy in ten years- a cherubic round-faced girl with pale blue eyes and blond curls. Sophie was also diagnosed at 2, following a regression as our readers know. Yes Sophie could be Issy except for one thing. Yup you guessed it; I am not Kelli Stapleton.
How am I so sure I am not, do you ask? Let's start right in the beginning, or at the diagnosis. When Issy was diagnosed at 2, her mother (quotes from the article linked above):
tracked down a child psychiatrist in Michigan and essentially dedicated all of her waking hours to the Issy- project.
All of her waking hours. That's a lot of hours. Remember, Issy was two at the time. How does one go about "curing" one's child of autism with ABA?
From the minute Issy woke up until she went to bed, Kelli subjected her minor routines to rigid control: Kelli would say, "Touch your nose," and when Issy did it she gave her a little prize. If Issy wanted something, she had to look Kelli in the eye to get it. Sometimes Kelli had to make the same request ten or 20 times in a day, because an autistic child finds it hard to tune in or follow instructions or make eye contact, much less do it all day. By the end, she’d be pleading, desperate, "Dear God. Touch your nose! Your whole future depends on this!"
All of her waking hours.

Yes, I can confidently say I am not Kelli Stapleton. I feel my risk of becoming anything close to her is very low, comparable to my risk of becoming say, Temple Grandin. Or Obama. Or anybody else who is not me really. In fact since my blog was started exactly two years ago and about two months after Sophie received her diagnosis, I can quote myself directly as to what I felt as we were in the early stages and considering ABA (which we eventually agreed not to pursue). From this post (the second post on this blog):
we do wonder if we really want her to be drilled for 40 hours a week, rewarded with a tidbit of food for each socially appropriate gesture she is able to replicate. Perhaps in this case the waiting list is a blessing, buying her some more time to just "be", regardless how unproductive her just being is seen as through the prism of ABA.
I wonder if Kelli Stapleton ever took the time for a similar reflection or whether the objective of "recovering" Issy overshadowed any other concerns for the toddler's well-being.
Aside from the fact that I think it's wrong (yes I said that. I don't feel disagreeing with the type of treatment Issy received all of her waking hours is just a difference of opinion. I think it is a wrong thing to do to your child and fellow human being), I will tell you something else. I am absolutely certain that if we subjected Sophie to this type of "therapy" she would lash out physically. And could I blame her? If someone is constantly "in your face" micromanaging your every movement and decision, does that person not become an oppressor, an abuser? Would you not despise them and foam with rage at the mere sight of them?
I don't doubt the fact that Issy was aggressive. Unfortunately I cannot say how she would turn out if she was not raised by a narcissistic mother who never accepted her as she was. It is very possible that she would be prone to hitting when frustrated, perhaps biting. It is impossible to say for sure however, because she was not raised in a home where she could be herself and learn to manage her emotions in a loving and accepting environment. She was singled out and punished for her disability, separated from her siblings to endure the therapy that continually sent her the message that she was not enough.
For three years, she became Issy’s full-time teacher, enrolling her other two kids in day care and sending them, on evenings and weekends, to the houses of relatives.
All of her waking hours.

How am I not Kelli Stapleton? When I wanted to engage Sophie I did the opposite. We include Sophie in everything we do as a family. We avoid separating our kids during family time without a very good reason. We constantly brainstorm which activities would be most suitable to all our family members, who are all of different ages, ability levels and at varying developmental stages. It is difficult sometimes but not impossible. Why do we "bother"? Because we are a family. We all matter.
How am I not Kelli Stapleton? Because when I realized that Sophie's autism was "here to stay" I knew that I had a choice to make. I could mourn, cry and pine for the child I thought I wanted. Or I could embrace the child I was given and learn to be the kind of parent she needed. From this post:
First thought that came to me- I am sad about the "would-be's". She would have been a cute little chatterbox, would have loved animals, would have played with her brother and sister, would have gone to the nursery school her sister attended, would have play dates with the little girls her age on our street... And I realized- it's not about Sophie. It's about me. All those "would have's" have meaning only because I attached meaning to them. Based on my interests and desires I have formed an image of a cherubic little toddler I would have expected Sophie to be- but it isn't Sophie. If I was a different sort of mom I'd be mourning the loss of a would-be ballerina or a would-be soccer player or a would-be artist. Sophie isn't mourning the loss of those dreams because they were never hers to begin with. As parents we fantasize about what our children will grow up to be. It seldom comes to pass as children pave their own reality (as they should). Yet, when their reality falls outside of what we consider desirable, we reject it, or fight it (it's not just about autism, in some families it could be going against the family profession, or marrying the wrong person, or being the wrong sexual orientation).
Now, I believe if a part of us is still mourning the loss of the child that's "buried under the autism" then that can lead down a destructive path. I've heard people yell at autism, swear at autism, banish autism out of their lives. That goes with the presumption that autism is sort of like a growth that is fused to the typical child's brain and that, with proper handling can be removed, leaving the perfectly intact brain exposed. I choose to see that autism is as much of Sophie's identity as her blue eyes, her infectious grin or her funky hair. You can't excise it from her and uncover a neurotypical Sophie which was hiding there all along. If I claim to love her, I can't make qualifying statements like "I love my child but I don't love her autism". It's like telling me "I love you but I don't like your introvertness" , or "I love you but not your green eyes". I have to think and say "I love you, all of you, exactly as you are".
You might wonder why I chose to focus on Issy's early years and not on that fateful day last September. I happen to believe that Issy didn't stand a chance well before her mom planned and attempted to end her life. Way before she chose to record her sardonic observations on social media. Issy's fate was sealed as soon as her mother realized that her child is different than she expected and she refused to make peace with it.
I am not Kelli Stapleton. Regardless where our journey takes us, regardless what obstacles we will need to overcome, Sophie and I will do it, together. There will be reflections on this blog. There will be thoughtful idea-seeking. There will probably be admissions of wrong-doing. But you will not read snarky comments directed at my daughter or her neurology, those who share it, the problems that aren't hers to be burdened with or intimate information that should be private. This is her story, recorded with love by her mom and her biggest fan. I will be honoured if she chooses to read it one day.

Wednesday, October 22, 2014

Things To Fight #IamNotKelliStapleton

Image: Pink text reads:  Things to Fight:  Ableism, injustice, hate, oppression, discrimination, fear, inequality, bigotry, prejudice, stimga  White text reads Change the world, NOT your child. #IamNotKelliStapleton #WalkInIssysShoes

What kind of society do we live in?

Image description: Dark purple/black background. Light pink text reads: "What kind of society do we live in when children are demonized for not having the tools they need to communicate, and abusers are held up as examples of loving and caring parents for the ultimate act of aggression against their child? #justiceforissy