Sunday, September 8, 2013

Another Cry for Help: The Tragic Case of Kelli Stapleton

In last week’s blog entry, I discussed the heartbreaking story of Alex Spourdalakis, a teenage boy with autism whose mother attempted to find medical help for his violent behavior and later fatally stabbed him to death and attempted suicide. While I certainly do not condone his mother’s decision to end his life or hers, I felt sympathy for all she had endured as a single parent trying to take care of her son who was becoming increasingly dangerous to others and was likely suffering from terrible abdominal pain. Our experience with our own Alex’s past bouts of aggressive behavior has allowed me to empathize with the fear and frustration that could drive a parent who did not have the support and faith we did to commit such a horrible and desperate act.

This week, the media reported another tragic story about a mother who attempted to take her own life and the life of her fourteen-year-old daughter with autism. [One account of this story may be read here.] In February of this year, Kelli Stapleton began writing a blog entitled The Status Woe in which she described the difficulties of dealing with autism and aggression, her daughter’s violent outbursts, and trying to find help for her daughter Issy. [A link to her blog may be found here.] In her last post this week on September 3rd, she describes working diligently to get a school placement for her daughter. After thinking that they had successfully found a placement for her daughter, the plans fell apart when a behavior plan would not be implemented the way she firmly believed it should be. Instead, the school decided that they would not allow her daughter to enroll there and recommended instead that she home school her daughter. Kelli’s frustration and disappointment is evident in her statement: “I am devastated.” Later that day, she was found in her van with her daughter, both of them unconscious from carbon monoxide poisoning. Her daughter was hospitalized in critical care; she was arrested for attempted murder.

In response to the tragic news of the Stapleton family, the Autism Self Advocacy Network issued a statement [To read their statement, click here.] condemning not only the mother but also any media portrayals of parents like her in a sympathetic light. Part of their statement reads as follows: “At the end of the day, lack of services don’t cause attempts by parents to murder their kids. What may play a role, however, is the idea prevalent in our culture that it is better to be dead than it is to be disabled.” While I absolutely understand their position that people with autism need protection, their comment shows a complete disregard for what some parents endure. Lack of services leads parents to sheer mental and physical exhaustion and a hopelessness that could lead to desperation. Moreover, many parents suffer the same physical and emotional distress that victims of domestic violence face; however, this battering comes from their children, many of whom are bigger and stronger than they are. The second assertion that death is preferable to a life with disability is ridiculous. Too many parents fight tirelessly to help provide the best life for their children with disabilities, taking care of them themselves 24/7 with unconditional love. To suggest that those with disabilities are treated as though they are somehow less is unfair to parents who give them so much more.

After reading comments in the media regarding Kelli Stapleton’s actions, I noted primarily two distinct groups: those who have no direct experience with autism who show condemnation and those who have family members with autism who show compassion.  This division is not surprising, as some parents with autism often deal with criticism from those who know nothing about what life is like for them, giving them parenting advice and unhelpful suggestions about what they would do if they were in their situation. My advice to those who think they’re being helpful is the old adage, “If you don’t have anything nice to say, don’t say anything at all.” Parents need support and understanding, not uninformed counsel, no matter how well intentioned it may be.

In the movie The Big Chill, one I have watched many times, the plot begins with the funeral of the character Alex and the reactions of his college friends. In speaking about Alex’s suicide, the minister notes that things happen in life that we don’t understand and remarks, “This is one of those times.” He goes on to suggest that Alex should have had every reason to live, but somehow he lost all hope. Poignantly he asks, “Where did Alex’s hope go?” In thinking about Dorothy Spourdalakis and Kelli Stapleton, I’ve wondered where their hope went that they felt death was the only option for themselves and their children with autism. Even in our darkest times with Alex, I knew that God was there, and we never lost hope. I only wish that they had felt that same sense of hope, and I pray that they and all other parents of children with autism can find hope and peace in the darkness, knowing that the light will come.

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.” Romans 15:13

4 comments:

marjorie said...

Such a touching post. It's so tempting to knee-jerk-judge others for actions that seem horrific, without wanting to sympathize or try to understand their suffering.

You are a true Christian!

K. C. Wells said...

My heart breaks for anyone who thinks that death is the only way to find peace, I have said it before, but society needs to begin to truly understand that there are a lot of people living with autism, either themselves or as caregivers. People need help, not judgement or condemnation.

Barbara Murphy said...

A beautifully articulate piece. Those who judge Kelli cannot possibly have a clue as to what she endured. Having a disabled child - especially a strong, violent and aggressive one with little or no control of their actions is all-consuming. Add that to the already depleted - financially, emotionally, physically, and mentally - caregiver who battles on that child's behalf constantly with myriad agencies whose role is to help, but usually just wage a war of attrition - and how can it surprise ANYONE that monumental exhaustion, hopelessness, and a profound feeling of failure might ensue. THEN add a family to care for, daily responsibilities that go with normal life. I don't believe for one minute that any parent of an older child of this severity hasn't thought - regardless of how fleetingly - that life would be better for everyone else if she, or he, and the child were out of their lives. It relentless, to a degree others cannot possibly relate. I am ashamed that anyone could refuse to feel some compassion for Kelli. Get off your high horses - because you're riding on a carousel while bragging about your rodeo skills.

Pam Byrne said...

Dear Marjorie, K.C., and Barbara,
Thank you for your thoughtful and kind comments. I completely agree that no one is in a position to judge another unless he or she has walked in that person's shoes. The more I read about Kelli Stapleton, the clearer it is how overwhelmed she was fighting for her daughter. I just wish that she had more support so that she would not have felt that life was hopeless.
Take care,
Pam