A tragedy, there really is no other word for it.   The unthinkable not only thought, but attempted.

Was this a mother so deep in despair, so overwhelmed, so afraid of what was ahead for herself and her child that she attempted to kill herself and her non-verbal autistic child? Was this a case of a selfish evil monster seeking attention?

The line is drawn,  but is it wise to simply choose a side?

I was approached by the mother, Kelli Stapleton, several months ago when she asked if I would interview her about the challenges parents face raising a special needs child with severely aggressive behaviors. Due to the sensitive matter and severity of impairment, I invited an expert panel to address the issues and offer possible options.   I initially titled the episode “A Secret Life of Shame and Fear” as I wanted to reach out to other parents, many of whom had reached out to me over the years regarding their children. Their children were with varying disorders but presenting with the same insurmountable obstacles and they sought help for their child’s aggression and rage. These mothers wrote looking for resources, options and support being too embarrassed or afraid to seek help and expose the physical and emotional chaos that was consuming their families.  They feared losing their children to substandard institutions, they feared for the siblings and they feared for themselves. This interview was for them all.

I was stunned and shaken when I received the call about the attempted murder/suicide by my guest.  As the news spread so did the intense feelings.  For some it was anger and for others compassion.  As would be expected, this tragedy has brought out very strong emotions and opinions among those in the special needs community not only here in the United States, but around the world.

What I find troubling is the importance of “vocabulary” as the focal point of many blogs and Op-ed’s in the media.  It seems the line in the sand has been drawn and we are to either be on the side of “Condemnation” or “Understanding”.   Those who stand with the beige granules of condemnation seem disinterested in any explanation for what Kelli Stapleton did.   To attempt to “understand” in some way, I presume, they fear could be misinterpreted as “condoning” this horrific act. The ones dredging their feet through the grains of “understanding” are at a bit of a disadvantage being left with a poor word choice.   As it is unfolding, as it often does, it is getting ugly. Some parents are being bashed for expressing any compassion for this mother.  Compassion is one of our best human traits, it is needed, but to have compassion without action will do little to save the next child.  There are no winners here. This tragedy, for many, is personal and has hit the community at its core.

The line is drawn, but not clearly defined.

Understanding is not condoning. Understanding is not permitting. Understanding is not encouraging. Understanding has several definitions and yes, one definition is to have sympathy or tolerance but the other definitions, the ones that need apply here are “understanding” as comprehension and knowledge or to perceive and comprehend the nature and significance. No one is condoning this tragic act but we BETTER well try to understand it.

Without the “why” without the “how” we can do nothing to prevent it from happening again and again. Without trying to “understand” and identify those parents at risk we are doing nothing but sticking our heads in the sand as well as our feet. Even with services many parents simply cannot cope. The argument that it is unacceptable to have “understanding” for a parent hurting a special needs child or leniency verses a parent with a neurotypical one has validity and children with disabilities deserve the same protection under the law, however, I’m not convinced that the sentence, no matter how harsh, will prevent this from happening again if we do not get to the root of the problem.

The state of mental health care for children in the United States is a national disgrace leaving parents to navigate a broken system with few affordable, let alone quality options for severely impaired children. We cannot continue down the same path we have been on. We need to fix it and in order to do that we need to “understand”.   We need to “understand” how to overhaul our funding through county, state, health insurance and school districts. We need to take the fight out of obtaining services so parents can focus on their children and not disability law. We need to stop accepting the unacceptable and invest in long term quality care programs to give these children, their parents and siblings a chance at the life they deserve. What we equally need is to “understand” why a loving mother could turn into an attempted murderer. We need to “understand” human limitations, we need to respect and respond to true despair, we need to identify red flags, we need to establish safety nets, we need to start the conversation and not stall it with unproductive bickering, we need to uncross our arms and extend our hands to lift these parents out of the trenches, not push them further into the abyss.

For a community that has fought long and hard to end stigma for their kids, why are we now projecting it onto broken parents? Why are the mothers and fathers who have tirelessly and victoriously put an end to the hurtful names and labels put on their children now so easily attaching the words “monster” “animal” and “evil” to another human being? If we want to save these at risk children we need to take great care not to stigmatize at risk parents who aside from their children’s challenges may have challenges of their own. Have we not learned from the staggering rise in suicides among those ashamed, afraid or unwilling to admit their depression or irrational thinking due to the stigma attached? The last thing this community needs is for parents to feel unable to talk about their frustrations, depression or anger for fear of judgement and blame.  The last thing we need is for parents to use murder as a treatment option. As I revisited that interview with Kelli Stapleton to try to somehow wrap my mind around what happened the vocabulary there too struck me.  The title of her blog said volumes …..  “The Status Woe”.  The word “Status” the relative position or standing and “Woe” great sorrow or distress. Yes, many special needs parents are living in a status of woe and would never attempt to hurt their child but for that one or two that simply cannot endure, we need to create an environment for them to come out and ask for help without judgement.

What this mother did was unfathomable, of that we can all agree.  From it we can continue to build walls within the community or we can work together to build a system that provides quality educational and therapeutic treatment to all children with disabilities and offer support through therapy for the caregivers.  There is no shame in being overwhelmed by the enormity of it all, there is no shame in needing help, there is no shame in being broken, the shame will be to allow another parent to fall to such depths as we stand with our feet and our heads firmly planted in the sand.

Wishing you all strength and calm,

Marianne

Our interview with Kelli Stapleton

 

7 Responses to A Line In The Sand – The Kelli Stapleton Tragedy

  1. I completely agree with you.

    You say “I wanted to reach out to other parents, many of whom had reached out to me over the years regarding their children. Their children were with varying disorders but presenting with the same insurmountable obstacles and they sought help for their child’s aggression and rage.”

    This to me is such an important point. These tragedies are not about autism per se’, they are about parents reaching the end of their coping strategies. Shaming people who share their struggles does not help the parent or the children they care for.

  2. Well said! The whole system is broken. Mental health and healthcare overall…. I think if both could be fixed and ‘outsiders’ realized the big picture, perhaps then more help would be available…… I too have felt despair in this journey…..

  3. Nina

    How about Issy? Not a word about any stress she might have felt. One of the videos her mother made shows Issy distressed because she is being forced to have “quiet hands and feet”. Maybe Issy was violent in part because she wasn’t allowed to release her anxiety through stemming. Having “quiet hands” increased her anxiety, she could not deal with it, she became violent. Maybe she was responding to what I would see as an abuse, not allowing a child, a teenager, to have autonomy over her own body.
    How about trying to understand Issy? Why not go deep into the reasons why Issy was, sometimes, violent? Maybe we should think about how we force our autistic children into compliance, to please what we see as the “normal” behavior, can make a child even more stressed. Maybe we shold stop trying to change our children and accept them.
    Many adults have been talking about being violent, about how they deal or dealt with it. Maybe listening to them is the best way to go, instead of listening to therapists that see autism as a disease that needs to be exterminated.
    Many parents are also raising kids who can become violent. But they don’t cross that line, and they don’t try to explain the “understanding”. The problem is the double standard. The problem is Issy became the trigger to her mother’s actions; bureaucracy became the trigger to her mothers actions. But she is not the only one facing these. She crossed the line and anyone who understands this or understands the understanding is also crossing that line. Because if Issy was not autistic/disabled, nobody would give this mother a second thought.
    I have lived for many years with autistic youth who could become violent. Some of them were there because the parents understood they could not be a good parent to that child. They respected their children individuality and did not think, like Kelli did, that they were the only ones who could do some good. They sought help. They admitted that their children would be better off away from them. They were thinking about the child, not about themselves, not feeling sorry for themselves for having a child that wasn’t what they wanted. well, that ship has sailed. Kelli proved that she is one who should not be living with Issy. The trauma, the stress, are on Issy now. Sadly, this article only speaks about her mother. And there you have it. That’s why it gets so contentious. articles who quickly forget the victim and creates another one.
    That’s why autistic adults are so vocal, rightly so, and I for one support them.

  4. Pingback: A Line In The Sand | For Special Needs Children

  5. Valerie

    Thank you for this — the divisiveness in our community is so distressing. What Kelli did was intolerable, but that’s stating the obvious. Nina says if Issy were not autistic/disabled we would not be giving Kelli a second thought. I couldn’t disagree more.
    Suppose Issy were a neurotypical child who outweighed her mother; who beat and battered her daily, causing serious injury and sometimes hospitalization. If this went on for months or years, and Kelli reached a point of despair and tried to end both their lives, she would get a lot more sympathy, and I doubt that she would be in jail. It’s the very fact of Issy’s autism that causes the outrage. I get that — Issy is innocent of any wrongdoing and never intended her mother harm.
    But anyone who thinks that sympathizing with Kelli means de-valuing the lives of autistic people is missing an important point. In my opinion, there is way too much emphasis on Issy’s autism — autism is not the reason Kelli tried to end their lives. Most autistic kids are not violent. We have no idea what kind of mother Kelli would have been for a non-aggressive autistic child. It was the violence that caused Kelli to break.
    Kelli was living in a situation of unrelenting, dangerous, and frightening physical abuse. I don’t think it matters whether or not Issy’s aggression towards her mother was in self defense, as Nina and others suggest. Regardless whether that’s the case, Issy is not to blame, and does not deserve to be hurt. If Kelli’s blog is to be believed, Kelli was being punched and beaten on a daily basis. Living like that, never knowing where the next blow is coming from, never knowing whether you were going to survive it, or what would happen to your family if you didn’t, is a level of stress few of us could withstand unscathed. Experiencing all this on top of the other challenges of life with an autistic child (the constant worrying about the future, the ups and downs of hope/dashed hope, the never ending battles with schools and health insurance, the inability to meet the needs of your other kids, the baleful stares of uncomprehending strangers) must have been overwhelming.
    Marianne, there was a lot of compassion in your radio interview, and in this analysis. Dr. Lieberman certainly hit the nail on the head when she told Kelli she needed help fast — “before something terrible happens.” It’s a credit to her clinical acumen.
    I cannot help but wonder if things might have been different, though, if Dr. Lieberman had treated Kelli with kindness rather than berating her. Something along the lines of “I hear you, and I’m so sorry you’re going through this. In my experience, NO family could get through this without help, and you should know that there is help available. You are very brave for trying to ignore your own pain while you fight to get help for your daughter, but please consider that you could help her more effectively if you sought help for the entire family,” as opposed to “you’ve got it wrong with your boat metaphor, and you need a psychiatrist badly. It seems that you unconsciously wish that you could still be a molecular biologist rather than a mother (please!), wearing that DNR bracelet is seriously f***’d up and you need to stop being a martyr.” But who knows, even the most compassionate professional probably couldn’t have persuaded Kelli to seek help in the context of a radio interview. Ariva Martin was kind, understanding and encouraging, but she evidently didn’t persuade Kelli either.

  6. val

    Doesn’t ANYONE notice that Issy’s father is not mentioned at all in any of this? What is the matter with the professionals who left him out of the interview completely? Obviously he was somewhere, he is now the sole guardian of Issy and their two other children. I am shocked about his complete absence, seemingly, as support and help for both Issy and her mother, and in Issy’s treatment along the way. Why isn’t he accountable for his half of this?

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