By Shannon Des Roches Rosa
September 11, 2014
Michigan parent Kelli Stapleton recently pled guilty to poisoning her autistic teen daughter Issy. According to police reports, Kelly lured Issy into a van, "drugged her, lit the grills and left the van to get more charcoal while her sleeping daughter breathed in poisonous carbon monoxide fumes."
Kelli and Issy both survived the attempted murder-suicide. Issy emerged from a coma and seems to be doing well; Kelli is in jail, and is scheduled to be sentenced on October 6th.
Reactions to this story are almost as disturbing as the story itself, because media and blog accounts about this case tend to empathize with Kelli, not Issy. In fact Issy is almost universally depicted as a trigger for her mother's act, rather than a human being with feelings, friends, interests, and rights.
We need to change that conversation.
I want us to be more careful and compassionate when we talk about cases like Issy's, to remember who the victims are. And if we parents find ourselves empathizing with Kelli, I want us to think long and hard about why.
If you identify with a murderer rather than a murder victim or if you become upset when people criticize parents who hurt or kill their disabled kids, then maybe it's time to think about how you found yourself in that dangerous mind space and start making changes to help you, your child, and your family.
It may be that you come from outside the autism and disability communities, have only heard negative media messages about how difficult parenting a child with a disability can be, have never encountered people who believe in your child just as much as they want to support you. If this is the case, your attitude is not entirely your fault.
But you can find and surround yourself and your child with community that matters—offline, and on—and with people who want the best for both of you.
It may be you reject the idea of accepting your child as disabled, because you believe that mindset means giving up or being in denial. You may assume parents like me, who constantly speak up about acceptance and understanding either have "easy" kids or are lying about what our lives are really like. But that's not what acceptance means at all, as explained by Real Social Skills:
"Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled."
It may be you can't stop worrying about what will happen to your child after you die. But most children—disabled, autistic, or not—will and do outlive their parents. Try to reassure yourself by learning about "the different paths a child with special needs can take after graduating from high school," and investigating what your family's long-term special needs legal planning options actually are.
It may be you are participating in a community that, while providing catharsis and emotional connections you haven't found elsewhere, is actually toxic, actually fosters insidious attitudes about parenting children with disabilities. If the parents you rely on for emotional support consider such murder attempts "altruistic filicide," or justified due to desperation, then it's time to cut ties.
It might feel like severing a limb, but you need to prioritize your safety and that of your child by finding parents who will help get you through trauma and crisis, but would not "understand" if you harmed your child.
It may be you don't have the services or support you and your child need; you may even feel like you're living in a minefield. This is a very real, not-rare situation, and it's not limited to parents who refuse to understand or accommodate their child's disability. Children who require high support deserve sufficient resources, and so do their families. When these services are minimal or unavailable, that is a large-scale failure on our society's part.
However, insufficient resources don't explain or justify murder of disabled children, because such crimes—which are also, frighteningly, not rare—do not actually have lack of services in common. So please don't spread the dangerous message that if parents don't get enough services, they might kill their autistic or disabled child.
Instead, parents—like me, like you—need to hear that it's not a failure or shameful to ask for help, and we need to feel safe about doing so. For our own sake, of course, and also because reaching out protects our kids as well as ourselves. I'm pretty sure disabled people who survived harrowing, abusive childhoods would much rather have been raised by supported and supportive parents.
That is one of the reasons so many autistic and disabled adults offer their insights online—they want our children to have better lives than they did. As long as parents are respectful, those adults can be a crucial part of your supportive community.
Parents also need to hear that when parenting is truly beyond their ability to handle, they always have options, even if those options break their hearts. They can, like two of my own friends have, place children in group homes. As I wrote on BlogHer in 2009:
"We need to stop assuming that putting a child into another's care equals giving up on that child. We need to stop declaring that when people relinquish their children, wholly or partially [...], it is because the parents are selfish. We should consider that these parents may be giving away the part of their soul that will always envelop that child for the child's sake, not to make the parents' lives easier."
And if a parent truly doesn't know where to turn, they need to know they can call emergency services, like those compiled by autistic writer and parent Paula Durbin-Westby. That call may result in separation between parent and child—maybe even a permanent separation—but who wouldn't have preferred for Kelli and Issy Stapleton to be alive but living separately by court order over Issy living with the knowledge that her mother tried to kill her?
It always comes back to finding the right community, finding friends who want to help you get through those days. And then the next one. And then the next. Many parents who feel this way are online, including Jess at Diary of a Mom, Kristina Chew, and Ariane Zurcher, who recently wrote about her relief in finding the support her family needed, and remembering her days of feeling alone and frightened:
"There is so much we are learning and still have to learn, but we are no longer alone. We are surrounded by other parents, professionals, educators and, most importantly, people who share our daughter’s neurology, those who are Autistic and who continue to share their experiences with us so that we might better parent our Autistic daughter."
Like Ariane, we need to learn to be careful where we look for help. We need to look to people who value our kids as much as we do—who will have both our and our kids' backs during desperate times.
One such invaluable resource is the group blog We Are Like Your Child, run by autistic writers, with the goal of helping parents understand their autistic children's needs and motivations. I constantly share the WALYC Checklist for Identifying Sources of Aggression. It explains, from the perspective of people who share my child's disability and neurology, the many, many, many reasons—from communication needs unmet to medical conditions to sensory overload—that may underlie otherwise inexplicable violence like that ascribed to Issy Stapleton.
I think we parents also need to be extra-cautious in how much we reveal, publicly, about our children's difficulties, because we don't want to give people who neither love nor understand our kids like we do ammunition for devaluing our children's lives, or send other parents the messages that disabled children do not have the same right to privacy as their non-disabled peers. Autistic writer Kassiane Sibley cautions against:
"...a disturbing trend that I see from parents & caregivers who 'mean well,' who love the Autistic in their life. This trend is that of publicizing the Autistic person's often very painful social difficulties, spreading them far and wide to get support or 'raise awareness' and a variety of other excuses."
We need to help others understand our kids, of course, but from the perspective of telling the world that they are deserving human beings, rather than crosses for us to bear and commiserate over. We need to protect our kids at their most vulnerable and difficult times—even if those are times when are at our most vulnerable, too.
So find your positive, supportive people. They're out there, in safe public and private online groups, and on mailing lists. Once you're part of those groups, you can connect with people who can help you process and problem solve on a smaller scale, whether through texting, Skype chats, weekly private vent sessions, therapy, or in wiping tears off each other's faces before they fall into our coffee or beers.
It's even okay to lurk in forums, if you're not comfortable talking with other people just yet. Just be careful about what you make public about your family, and who you listen to. And remember that your community is out there, you just need to locate it. Your people are waiting for you.
Shannon Des Roches Rosa writes and curates at ThinkingAutismGuide.com, BlogHer.com, and Squidalicious.com. She would like to thank the autistic author of the blog Real Social Skills for helping her shape this post.