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Issy and Kelli Stapleton: Murder, Suicide, and Family

I have been deeply disturbed for weeks. I keep trying to write this blog post and backing away from it, over and over. I have decided not to publish it, and alternately been compelled to publish it. Ultimately, this is my truth. This is what my family survived, and if it was the reality for my family, then it’s the reality for other families because we aren’t unique. But back up; this doesn’t begin with me, but with another family.

The facts of the story: On September 3, 2013, Kelli Stapleton published a blog post in which she described an IEP meeting that ended with the district school refusing to provide services for Issy, Kelli’s 14-year-old autistic daughter. Issy had just been discharged from an inpatient treatment program in Kalamazoo, MI (three hours from the Stapleton home) where she was being treated for, among other things, aggressive behavior related to her autism. While at her inpatient program, Issy had developed a good relationship with a teacher in the junior high she attended while she was in treatment. Kelli and her husband, Matt, decided that Kelli and Issy would move to Kalamazoo so Issy could attend school there and Matt and the couple’s other two children would remain at home.

Later that same day, police found Kelli and Issy in the family’s van in a rural area near their home, both unconscious, during an apparent attempt by Kelli to end both their lives. Issy spent about a week in the hospital and is now recovering at home. Kelli is being held without bond on a felony attempted murder charge.

Kelli’s act set off a virtual bomb in the special needs/disability blogosphere, and especially in the autism world. I will not guess at Kelli’s motives for trying to kill herself and her daughter (we will only know her motives if and when she tells us), but I do know how I got to the edge of the cliff that Kelli went over.

I have been consumed by what Kelli did since I heard the news. Part of that is because I know Kelli and part is because I have been close to doing what she did. Since the news broke, the cry that has gone up from autistics and people with other disabilities is, we have been dehumanized. We are not considered valuable or worthy of consideration, kindness, freedom, or even our very lives.

That is true. Our culture as a whole, and we as individuals, have not honored every person as we should. We have hurt, isolated, ostracized, assaulted, sterilized, tortured, and killed people we don’t understand. We have deemed those who seem different less worthy, and often we have done the hurting in the name of helping, calling it therapy, treatment, or religion. If you or someone you love have been on the whip-crack end of that terrible phenomenon, I am sorry. You deserve better. You deserve all good things, all the support and kindness and love that this world and the family of humanity has to offer. The people who hurt you were wrong. If they had good intentions but hurt you anyway, they were wrong. If they loved you but hurt you anyway, they were wrong.

All that said (and all that true), there is a complexity that we’re losing by insisting that a discussion of what may have caused Kelli to do what she did (or that any discussion of why so many caregivers kill or attempt to kill the disabled people in their care) is necessarily devaluing Issy and other victims. Condemning Kelli will not stop the next desperate parent from taking a similar action, and in fact may prevent people from reaching out when they are in danger.

Kelli and Issy were (and are) victims of the same system, and that system made them victims of each other. When we, the ground-level stakeholders (people with disabilities, caregivers, and people who would like the world to be more just), focus on the ways Kelli and Issy victimized each other, we let all the other people off the hook. When we vilify Kelli, or autism, or the various therapies (on which I am no expert, since my disabled child has serious mental illness, not autism), we don’t scrutinize all the people who hold the power and the pursestrings.

Think in terms of power and investment. Kelli and Issy and the rest of the family were relatively powerless. Therapies, education, and help for Issy would only come via the bureaucracies that hold the purse strings, as they do for most of us who don’t have a few million dollars at our disposal. So let’s say the Stapleton family needed a level of help we’ll call X. That X represents the amount of help that enables the family to have a life that is life. Issy goes to school all day and there is adequate care there for her to be safe, healthy, and to learn as much as she can. There is enough help in the evenings and on weekends so that the other Stapleton children can have the attention of their parents, help with homework, family meals together, and regular outings. The Stapleton parents have the space they need to nurture their relationship and their individual interests. Issy has all the appropriate therapies that her team parents, teachers, and other care providers agree she needs, and her parents and siblings have therapists, too. There is so much help that the parents are not overwhelmed and the children are not afraid.

The Stapleton parents are completely invested in the family getting help level X. Their desire is for a life that resembles normal family life as much as possible. I’m making that assumption, of course, but it’s based on what I want for my own family so it’s not a big stretch.

What are the chances that they will get help level X? In my experience, nearly zero. I know dozens of families in which there are children with extraordinary needs, and the amount of help they get is always X minus at least half.

In late 2009, I had begun to consider that suicide was reasonable, as was ending the life of my mentally ill son, Carter, then 7 years old. There was no hate in me for Carter; in fact, it seemed to me that ending our lives was the only loving thing I could do. When I read of people condemning Kelli’s actions, saying that autism or disability is no excuse for murder, I am perplexed because I wasn’t looking for an excuse to kill my son; I was looking for an excuse not to. I believed that ending our lives was the only loving response to my son’s illness and suffering that was available to me.

(Pause. Breathe. We are all well now, and very safe.)

I’m not a stupid person, nor am I in general delusional, but when I lived with unrelenting and profound stress, fear, grief, and anger, coupled with severe sleep deficit, I changed. I watched the light go out in my other children’s eyes, watched my husband descend into periodic despair, and that changed me. Some people told me I was overreacting and others told me I was a saint, an angel, and a hero, and that changed me too.

Everything about Brian’s and my lives was shredded in the early years of Carter’s life. All the things we did that gave our lives meaning and joy were gone: church, prayer, sex, family relationships, play, conversation, reading, walking, writing. All the things we did that made our lives work were destroyed, or minimized to the point of dysfunction: maintaining our home, maintaining our yard, keeping up with the laundry, preparing meals, shopping. Those things that kept us feeling good about ourselves disappeared: hobbies, friendships, art, routine medical and dental care, taking care of our personal appearance, even hygiene, and of course sleep. We slept so little for so long, I’m not sure how we functioned at all.

I’m not talking about things that we experienced occasionally, or sometimes, or during the day, or for a few weeks here and a few weeks there. I’m talking about every minute, day and night, for months and years. We know that war and poverty change the structure and function of the brain; it’s not a stretch to assume that living with unrelenting and profound stress at home can do the same. And just as some infants come out of their painful early years in Russian or Bosnian orphanages just fine, and some come out deeply damaged, parents come to special needs parenting with our own strengths and weaknesses. Some of us will bounce, and some of us will eventually shatter.

In the midst of the chaos of our home life,  we were condemned and criticized everywhere. I was patted on the head (once literally) and called a worried mom (many times, in many ways) when I told doctor after doctor after doctor that my child did not sleep, could not laugh, smashed his own face into the floor, and was not happy. I spent hours on the phone with the insurance company and got very little in return for my efforts because we just don’t cover developmental delay. I heard the questions again and again, searching for how Carter’s problems were my fault: did you take medicine, what do you feed him, were your other kids this way? I saw the nasty looks and heard the foul words from people at the grocery, the post office, and restaurants. We called for help and were added to waiting lists for tests, waiting lists for appointments, waiting lists for services.

I begged for help and heard, in a million ways and on a thousand days, no, we can’t help you. There’s nothing to be done. Go home. Deal with it.

I never devalued my son’s life. Our culture, society, and systems did that. When I waited on the playground for the kindergarten bell to ring and none of the other parents would talk to me because my son was “that boy,” the one who attacked other kids, couldn’t sit still, and occupied all of the class aide’s time and attention, I felt that shame, but it wasn’t mine. That shame belonged elsewhere—with  the principal, lawmakers, and supervisors who refused to provide appropriate placement. They devalued my son and my family. Doctors who saw me, frantic and pleading, for a standard 5-minute visit, and handed me a book about sleep instead of sitting and hearing me and working with me to find a solution—they devalued my son, my family, and me, but I felt the shame.

In the midst of all of that, with my life swirling in pieces around me, the dominant emotion was sorrow. My little boy was in agony. He was afraid, sick, psychotic, depressed, aggressive, suicidal, manic, and miserable. Even the most basic pleasures of life, a good night’s sleep or an easy poop, were denied him. I would have happily chewed off my arms if that would have eased any portion of his pain. I have held him through thousands of hours of sleepless anguish, pulled him back from the brink of his own attempts to hurt himself or end his own life, and watched a million hurts chip away at his heart. I would have done anything to fix it. I did everything I knew to do, and still, he suffered.

We lived like that for eight years. It changed me. It very nearly broke me. I didn’t get to the place where suicide and murder seemed like appropriate actions because I was selfish. I didn’t get there because of hate or even anger. The world was hopelessly dark, help far too scarce, and the shame too large. Most of all, the agony seemed endless, limitless. I have read over and over in the weeks since Kelli Stapleton tried to kill herself and her daughter, “A mother should protect her child!” Sometimes, I couldn’t see any way to protect Carter except to take him home to Jesus.

We have enough help now. Carter isn’t nearly as sick as he was, and my husband and I have more ability as caregivers than we used to. We survived long enough to get to the tops of some waiting lists, and we finally gained access to an excellent pediatric psychiatrist, a therapist, and a behavioral management specialist. We found a parent support group and a wonderful school that my parents have paid for. We began the process of turning our lives around, and while it hasn’t gotten easy, it has gotten manageable. There is joy again. My gratitude for Carter’s relative health and my family’s improvement runs deep like a river, but many families don’t get to experience the relief we have enjoyed in the past few years.

Violence perpetrated upon people with disabilities is a dark and ugly part of the human story, but I refuse to believe that we’re not capable of thinking around the corner and separating the cruel perpetrators from the desperate ones. Issy, Kelli, and the whole Stapleton family were left twisting in the wind. They had services, but they weren’t enough. When someone in a family is repeatedly aggressive, that means that family needs more help. When people in a family are repeatedly seen in the hospital for injuries sustained at the hands of a family member (Kelli sustained brain injuries when she was attacked by Issy), that family needs more help. When people are being bitten, scratched, and punched; when people are not able to stop biting, scratching and punching; when some children are hiding in closets dialing 911 (as one Stapleton child is said to have done); that family needs more help.

Silence and condemnation are not the solutions to those problems. The only solution to the problem of not enough help is more help.

We need a serious cultural shift in the way we think about family and caregiving in general, and caring for people with disabilities specifically. Even in the worst times, I was not a cruel or bad mom who hated my child; I was a desperate and isolated mom of a very sick child who I loved. We have to speak the truth, listen to each other, and insist that we all deserve better.

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211 comments to Issy and Kelli Stapleton: Murder, Suicide, and Family

  • K

    Incredible. True. Heartbreaking and familiar. Thank you for telling the story.

  • A tragedy on so many levels. If interested I interviewed Kelli a few months ago on the topic http://thecoffeeklatch.com/a-line-in-the-sand/

  • staceesmith

    It is worth noting that:

    1. Issy was a VERY violent child. She’d knocked Kelly unconscious at least twice in recent months and regularly had to be restrained while at the residential treatment center. It is within the realm of possibility that a regular school was NOT an appropriate placement for this particular child. It is worth noting that the teacher who scuttled Kelli’s first-choice school placement did NOT do so out of pure spite.

    2. Kelli had every support known to mankind. She was coming off a 6+ month break from Issy (who’d been at the treatment center) and had a Medicaid waiver-funded 1:1 professional support person for all of Issy’s waking hours. Kelli had already trained those workers on her daughter’s behavior plan.

    Yet she tried to kill her girl less than 36 hrs after Issy was discharged.

    3. What other supports did Kelli need? List them, please. Because I (literally) cannot think of any.

    4. Kelli flat-out refused to follow sane advice from any number of medical professionals, e.g. would accept no residential treatment facility other than the ONE she picked for her daughter, refused to consider medication, unwilling to participate in therapy or to have Issy participate in therapy or for the whole family to get therapy, etc).

    https://www.google.ca/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&cad=rja&ved=0CEEQFjAD&url=http%3A%2F%2Fwww.blogtalkradio.com%2Fthecoffeeklatch&ei=tCBMUvnbE8ThyQG834DYDg&usg=AFQjCNGEsgD_7ocQ_JP02bKwDRJdhWmlSQ&sig2=-Lne1_iqUnIozLlV3y0GVw

    (As a person who has been on anti-depressants since elementary school, I know that finding the right med/ getting the right dose takes trial and error. Just because you had one or two bad or seven bad reactions to various medications, does not mean there isn’t a medication out there that will help. Ditto for therapy. My baby sister had five or six longish in-patient stays on the paediatric psych ward, before graduating from high school. It took FOREVER to find the right mix of meds. K is alive – and happy! And educated! And gainfully employed! – today because of a boatload of meds and therapy. Had K given up after not-quite-right med cocktail #11 and/or therapist #9, she probably wouldn’t be).

    • It is not my contention that what Kelli did was sane, rational, or reasonable, either on the day she attempted to end her own and her daughter’s life or in the months and years leading up to that day. What I am saying is that living with that level of stress changes a person so that decisions that seem reasonable to us (presumably rational people) may not have made sense to her.

      I do know that all residential schools are not created equal. I have visited some that are grim, depressing, and/or downright dangerous. Children are much more likely to be assaulted (physically, emotionally, and/or sexually) or murdered when they are in out-of-family placements than when they are with their own families, but murder-by-parent makes a big splash in the news while murder-in-institution doesn’t. Placing children out-of-home is terrifying for parents. I have not had to do it myself (thank God) but I have watched and supported many friends as they did it and it is horrible.

      When you place your child in any kind of residential treatment, you lose a level of access to that child that is almost unthinkable. There are phone privileges and visiting hours, which should never apply to non-abusive parents of ill children (many kids in RTC are in protective custody so I’m making that distinction here), but I’ve never heard of an RTC that doesn’t do it that way. Imagine seeing your child in a cafeteria for 90 minutes twice a week, and being allowed one 5 minute phone call with that child every evening between 6:30 and 7 pm. I say all that because people seem to act like residential is a dandy option, or that it is an easy thing, or that it is not a problem to access that level of care. It’s not. No one, even parents of very disabled children, wants their children to live elsewhere. And I don’t know what other services the Stapleton family needed, but I know that if I had to move 3 hours away from my husband and our other children (and not for the short-term) to get my youngest son the care he needs, that would be soul-crushing. Also, the neighborhood school absolutely does not have the right to say, “sorry, we can’t help you.” They are required, by federal law, to find a solution. That doesn’t necessarily mean that solution will be in the school; it may mean that they have to pay for a residential placement or for a home teacher or any of dozens of other options, but to dismiss a family out-of-hand and suggest that they “try homeschooling” is illegal. A “free and appropriate education” (or FAPE, as the law is known) wouldn’t include 5 hours on a bus everyday. That is unreasonable for any child, much less one with severe autism.

      Kelli didn’t refuse medication for Issy. They hadn’t found any that worked, but they tried quite a few meds. We don’t know what happened in the days leading up to 9/3, except for what Kelli shared on her blog. But I’m not willing to concede that she did a selfish, contemptible thing just because WE see other things she could have done. I do know that there is no such thing as a “break” from a child with severe disabilities. My friends whose children are in out-of-home placements are not on vacation. They continue to parent their children, they spend their time on the phone with the treatment team, in therapy, and in meetings. They constantly do battle to keep the treatment funded. They lay awake at night. They miss their children. They work to help their other children cope with their own emotional trauma and prepare them for the sibling’s return. Imagine if you have one child who has tried to kill one of your other children, and you have to prepare the victim to live with the perpetrator again. The Stapleton family is not the only one I know who is in that situation and I can’t begin to describe it to you. I could tell you stories of trauma and abuse and terror that would go on for thousands of words.

      All of which is just to say, this is a problem that is infinitely more complex than can be solved by saying Kelli is a bad person. For one, I don’t think she is. I don’t believe for a minute that she did this because she didn’t like Issy (the idea is laughable) or because she believed she was better off dead than disabled. Though of course I’m overstepping; I’m not in Kelli’s head. *I* never thought that my own son was better off dead than disabled. I did want his suffering to stop. I’m not a bad person. I love my family. I have never intentionally hurt my youngest, disabled son, but I got to an emotional place where I believed death was the kindest thing for him. I was wrong and I was ill, but I was not bad or evil.

      • staceesmith

        Of course all treatment centers aren’t the same — but there’s a big difference between refusing to consider Facility X or Y vs. refusing to consider anyplace but Facility Z. Residential treatment is a last resort, limited visiting hours do suck — but even pediatric psych wards have them*. Similarly, ONLY the school her husband was principal of was acceptable to Kelli.

        Yes, Issy was entitled to FAPE, which requires placement in the least restrictive environment. A very violent kid like Issy? It’s within the realm of possibility that even with 1:1 aide, Issy could have hurt the other kids. The school was required to find an alternative – but Kelli didn’t give them a chance to. Keep in mind the Stapletons live in a very rural area — spending 2-3 hrs roundtrip on the bus to school just goes with the territory. (5 hrs for an autistic kid is unacceptable; on that we agree).

        In an interview shortly before Issy went into treatment, Kelli said she’d tried lots of meds YEARS ago on Issy, none had worked and so she wanted a behavioral approach ONLY. Kelli is entitled to do this — but it’s irresponsible to flat-out refuse to consider a treatment that has the potential to significantly improve your kid’s life.

        Having Issy out of the house for 6+ months isn’t a break? Then I don’t know what would be. At a minimum, the other kids are safe and everybody can catch up on sleep. Kelli was constantly fighting for funding for Issy (as almost all SN parents have to do all the time, it’s the status quo) — but it is presumably easier to do so without the violent kid in the house.

        * going back 15+ yrs, the rules for my sister were along the lines of 10 min per hour when in the ICU, no visitors between 8-4 on weekdays and no calls past 9 PM.

        • It doesn’t make much sense for us to debate what Kelli did, or whether or not what she did was somehow “justified” or any of that. She did what she did, and we don’t know why. I’m trying here to show how I got to the place where I nearly did the same thing, and yes, making some assumptions that some of her motives were similar, but we can’t really know.

    • I think it’s important to consider the timing of this awful act. It was when Issy returned home after a long and I imagine peaceful period for the family. This is consistent with a post traumatic stress reaction, Issy’s return home being a potential trigger for Kelli.
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    • kathy

      Amen to your words.We also have a daughter 16 are with the same mental health we have had our daughter at Pinerest in patient four time,Hawthorne once and Ann Arbor once. Ann ARbor recommended a treatment but is was costly and not enough data to try according to the dr who heads up Benzie Mental Health I personally saw a young man who had this treatment and it helped. So instead of approving treatment more money in the long run are spent on meds,hospitalizations, extra help at home more staffing in the school. The first 2 sent her home because they didn’t know how or what to treat her because she is also handicapped doesn’t talk.W also had the same agency izzy
      had for the in home help they didn’t want to do our daughter as she was so violent. I have had many injuries from her she has broke her sisters her grandmother’s nose also a concussion to a nurse at one of the psychiatric hospital.She has been on some of the strongest does of meds and so many different ones.would I consider a regular school no way I want the best education for her but also want to protect other students and staff.As it is she still can be violent in the TBA program.
      With all the support from Kellie’s friend and community and family I just don’t understand as their are so many families out there that have very little support from family,friends,community,church. She is a very intelligent person but what she tried to do to herself and is beyond my understanding these are children of God and we don’t have the right to end their lives. If life was unbearable for Kellie why include Izzy in this plan was this Izzy father or family wishes to I don’t think so. There are other ways if you are not able to handle violent children. But I feel for Kellie but I also have been in that dark place with our daughter but I would not try to end her life.Her twin brother is also violent but does not walk. I SHOULD TELL YOU WE HAVE ADOPTED 13 special needs children and have to say it is far from easy but God had a reason for them being in our lives and teaches us so much how about ourselves and how cruel this world is for being different.I am not very good expressing my self in writing. But I have tried to tell a little of our story of our children.

  • Adrienne, this is a very heartbreaking read, but every point you raise is so important. I don’t know what the answers are; the whole of human history is one long string of suffering, it sometimes seems, and WHY? Wearing the shoes of a parent who has struggled to get help for my child but never, ever dealt with the level of stress and trauma that you have lived with, I can’t even begin to judge or to understand how you survived. I hate what happened to Issy and to the Stapleton family. I don’t know them or their situation well enough to judge, all I can feel is deep sorrow and a sense of horrible wrongness.
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  • I think at some point we have all walked that long dark hallway into the depths of where our love lies. When it gets too hard, when there’s no help to be found, when we’re clinging by the thinnest wisp of our sanity, when we’re pushed too far…we all have our breaking points. We can only handle so much.

    I’ve never reached that point. I’ve sat in the floor and wailed in the middle of the night. I’ve walked out of my children’s rooms with shaking hands and fear about what happens next.

    Without knowing all of the information about the decisions made from everyone involved, from Kelli to Issy to the school to the insurance company to EVERYONE, none of us can know why Kelli did what she did.

    I can say I’d never hurt my children but there’s always that long dark hallway to navigate when you’re shoved through the door and it’s locked behind you. I love my children endlessly but love can’t save me if one of them ever beats me to death.
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  • So very, very moving. And so very important to have this conversation. Thank you for speaking your truth. Thank you for holding on. Thank you for being there for me, and countless others. ((YOU))
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  • This is excellent and I’m very grateful that you wrote it. All of your points are so important. Thank you.
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  • Heather

    I think you did the right thing and the brave thing by publishing this post. We need to hear more about the people who get to the edge and manage to come back, because I don’t think anyone has any idea how many of us have stood at edges. I’ve had moments where if there was some simple way to make it all stop–I would’ve done it.

  • Thank you for being brave and writing your story <3 <3
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  • Tosha

    Thank you for your honesty. I’ve only seen the “system” from the educational side and it truly is shameful. I can only imagine the frustration a family must go through.

  • Heartbreaking. I’ve never been there, but I can easily see how one could get there. More support – I think that is what ALL of us need, parents of special needs kids, and parents in general. All of us.

    Thank you for writing this.

  • Bridget

    Thank you for sharing the depths of emotion you have seen, our system has a long way to go before getting it right for families who live with disability on a daily basis. I hope Kelli’s story can help us change that thank you for helping us see it in the light for what it truly may have been. Like you discussed in your article we will never know until we hear it from her, and yes prolonged stress like she endured changes people.

  • Ann

    Tears. And gratitude for your brave, honest, compassionate sharing.

  • Very powerful. I could feel the frustration, desperation and LOVE. Thanks for sharing your powerful story.

  • You are brave, articulate, and I hope this column reaches far and wide. Thank you.

  • I don’t have anything to add, but feel it’s imperative to say that I hear you and I agree at so many levels.
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  • Oh Adrienne, I hear you and you are so very, very right. I don’t know the details of the situation with Issy and Kelli but I do know that I have struggled to get help for my son and I have worked with parents who struggle to get help for their children. I have talked with parents who felt their best option was killing their child and then themselves because that is the only way they felt their child would have peace.

    Our country simply doesn’t have a system in place to help severely mentally ill or severely developmentally delayed children…because we don’t wish to acknowledge that such children exist and we don’t place a high value on their lives. Our country doesn’t even have a good system in place for severely mentally ill adults. Anyone, no matter their age, is seen as only marginally valuable in the U.S. if they struggle with mental illness. We fund cancer research and support to the nth degree (which is wonderful!)but mental health research and care gets minimal money. Until we experience a major cultural shift and begin placing value on the lives of those who struggle will see parent/child murder/suicide time and time again. It is preventable, but not unless we change the value system in which we live.
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  • You are very, very brave to publish this post, and I’m glad you did. I hadn’t heard about this story before this; and we all need to know. You are so right, about how disabilities can change a person. People need to do less judging and more understanding and your post helps make that happen. Thank you….

  • Thank you. A million times thank you! You have written what I’ve been trying to for a month now. I can’t possibly thank you enough for sharing this.

  • MammaLynn

    I’m also very grateful to read this post, & I totally get how hard it had to be to click the button that made it public. I’m coming from a very different standpoint, but mental illness, congenital issues that affect a life from the beginning, runs in both sides of my family, & I certainly believe that most things in this country seem to work backwards. My child doesn’t have special needs, but we also don’t have a typical situation, I’ve witnessed my kiddo suffering, & know how helpless I’ve been at times, to fix it. There are times all I can do is hold her, tell her I’m sorry this is happening, & that it’s not fair. Not fair-i feel like I’ve done something wrong when I’ve said that, cause we’re all supposed to understand that life isn’t fair, & get over it, right? Pull ourselves up by the bootstraps, & so on. I’m angry that mental illness is ignored the way it is, “handled” the way it is, when it’s at the root of so many things that could be avoided. So much suffering, because, of course, “it’s all in their head”, or “it can’t be that bad”. I’ve lost faith in most of humanity. I feel terrible for the Stapleton family, & I’m going to stick my neck out & say that I question the idea of charging Kelli, I don’t think life in prison, if that’s the end result, is the right thing. I’ll admit that this is the first I’d heard about the case, I don’t have the knowledge to make any claims, but I certainly feel for the entire family, Kelli & Issy included. I DO have plenty of experience with catastrophe, mental illness, fear & desperation.
    Thank you for posting this.

  • Kate

    Yep.

    Living under sustained assault is brutal, brain-changing. Every aspect of your life devolves. Still picking up the pieces.

  • Jane Scott

    Adrienne I just want to say I’m sorry you felt like that,and that this poor mother felt his way too.You’re right it’s more common than we’d like to admit,and I cry alongside anyone who has had these awful feelings of despair,and rail against a system that makes difficult family circumstances so much worse.I believe it takes a village to raise a child,even more so if that child has special needs of some kind,and am angry that the powers that be appear to agree as long as it does not cost them anything.It’s a well thought out and brave post to have written.

  • Thank you for this, Adrienne.

  • I’d never seen your blog before; an online friend posted the link to this piece. You are a fabulous writer. I was completely absorbed, and horrified and saddened. It was an incredible reminder that we need to actively strive to hold everyone, everyone, in kind regard at all times. I’m sure I’ll remember your piece every time I see a parent in distress from now on.

  • Kate

    I wish more people understood that suicidal ideation is NOT a desire to die, nor is a plan to take someone out with you a desire to kill. Suicidal ideation is what happens when your stressors outnumber and overtake your coping resources. That’s all, and yet it’s so often misunderstood because we think, from a privileged position of high function, high health, and high resources, that a suicidal person “had so many reasons to not.”

    • Molly Franks

      I think depression that comes from desperation causes something chemical to happen within our systems. When that happens, we are no longer able to help ourselves. I would venture to speculate that most people who commit suicide, or attempt to do so, are largely believing that it is the best solution for everyone, not simply a way out for themselves. This is a terribly painful place to be, and clearly not a time when a person wants to be honest and beg for help.

  • I LOVE YOU. Thank you for talking about this very difficult subject and saying the things we all feel. I sent this to Kelli this morning, I’m sure she will thank you too. XOXO

  • Cheryl Bard

    Beautifully written. Still praying for the Stapleton Family. Sending love and understanding to them all.

  • Molly Franks

    Thank you for this thoughtful piece of writing and for your honesty. We need more of this.

  • Deb

    Thank you for your thoughtful comments and insights.

  • Jeralyn

    Thank you, so much for posting this. It provides some emotion and insight to Kelli’s story as well as plight for so many. Heartbreaking, but it’s real. Prayers for all who have walked this walk.

  • Terry

    There are many questions out there that need answered to try to find a way to prevent another situation like this.
    Is it safe to assume that the ABA treatment at approx $750 per day for approx six months wasn’t successful?
    At what cost was the local school district expected to absorb to continue some semblance of this program? If I’m not mistaken the school district had provided a one-on-one aide for Issy for most of her public school experience. I’m sure this was necessary and I’m sure the family needed support after school too. The problem as I see it is the competition for scarce education and social support dollars. Sports programs cost money, gifted programs cost money, busses, salaries, heat, and the list goes on.
    So it seems to me that the most important question that needs answered is, “Where is the money to come from to provide the necessary support?”.

  • kim

    And that is where the government (who must always have their hands on everything) needs to reevaluate its priorities. We spend billions of dollars sending our troops to fight battles on foreign soils..leaving no monetary means to take care of our own. We have children and adults hiding in the shadows because no one cares to acknowledge those of us that are “damaged”. Through all of this mind blowing incident..we forget… Kelli tried to end her own life as well. One slip of the foot on the tightrope shes been walking resulted in an epic fall. A fall that took them both over the edge because she has never stopped holding her daughter’s hand. If only all of us felt as deeply hurt….what would we do?

  • Isador

    Kelli’s story is the reason I finally took the time to get help for myself. Her term “battle weary” on her last blog hit me hard. I am so battle weary myself, so exhausted, so angry, resentful, frustrated, stressed and bone-tired. Not at my boys. Never at my boys. At myself (for not being stronger, not being richer, not being a better momma, not being strong enough, not getting my oldest diagnosed earlier, not fighting harder, not having a good job that could afford better insurance or enough money for my boy’s therapies, not being happier, not having more energy), at Aetna health insurance (for not covering the diagnosis or treatment for autism spectrum disorders and developmental delays), at our county (for discounting every world renown hospital we have evaluations for, for ignoring high functioning autism, for treating my son as a neurotypical, for treating me as if I am crazy/stupid/paranoid/greedy, for not being able to educate my son, for not understanding autism, for all the money I have had to spend on tutors, educational advocates and now an attorney).

    I have fought the county/school district five years now. Every Children’s and Kennedy Krieger Institute’s evaluation (occupational, speech and language, physical therapy, neuropsychological evaluation) was ignored and discounted. Year after year. No IEP. Never an IEP. We had to transfer schools because of bullying and the autism “expert” for the county wrote a letter that made us sound like we were imagining the bullying. This is the same autism “expert” who said my autistic child (who also has social anxiety and social skills deficit) only had some problems beginning a conversation with his peers, otherwise he was fine. This is a child who has walked alone at recess every day – going on since 2nd grade, even after asking kids in his class daily if they would play with him. The same child who has never been invited to a birthday party, a play date and where three years in a row no one but his two cousins showed up for his own birthday party…(never again: only family parties since then).

    He also has gross and fine motor skill deficits (at 6 yrs old could not zip, button, snap, hop, skip, jump or run without falling. He Still cannot tie his shoes at 11 or pedal a stationary bike), has executive function deficit (could not dress himself until age of 6, could not clean his room on his own, did not understand how to begin homework), has Sensory Processing Disorder, has an anxiety disorder, was just diagnosed with depression, has dysgraphia and it is extremely painful for him to write, has a math deficit (he cannot add or subtract well, much less bendable to multiply. How has he been receiving B’s in math all these years???), has speech and language deficits, ADHD, etc, etc. He never received any type of therapy from the county/school. Not a thing.

    We spent a fortune in copays for OT, tutors (to teach him to read, to help with math), social skills play groups, camps, martial arts, therapeutic horseback riding, etc. Health insurance would not pay for ABA or speech.

    Then .Insurance changed to Aetna, which does not cover autism at all. Or developmental delays. It is $5,000 to have our oldest son re-evaluated, which should be every 2 years. It has been 4. We get no speech or ABA therapy. We get a total combined amount of 25 sessions for OT and PT. Combined! That is 3 months a year of OT and 3 months a year of PT. Aetna’s policy bulletin says autism spectrum disorders are an educational intervention. Wish my county/school district felt that way!

    We pay $700/month for this health insurance btw. Plus a yearly deductible. Plus high copays. All for useless insurance that does not cover what my two children need.

    My second, the youngest, started PT at 6 months. 25 total visits per year. He was diagnosed at 16 months with developmental speech delay. Aetna does not cover it. We pay out of pocket for speech therapy and his behavior is so insane, it is useless. So we begin ABA therapy out of pocket.

    We are now paying $600+ per month for both our children to receive a very minimal amount of ABA therapy. We have to pick which therapy they need and who needs it more. Who will benefit from more therapy. We have to pick which of our children is more important.

    Both boys need speech therapy at $75/per 30 minutes. Our youngest should have it twice per week. That is $225 per week for both.

    They both need PT and OT for the year. Aetna covers 25 total visits combined. It is $80/hour per session. So for 7 months out of the year we would have to pay out of pocket. It would be $260 per week for both boys to receive PT and OT (for 7 months per year).

    The amount of ABA they both could use would be thousands per month. Thousands. We can only afford 4.5 total hrs for both boys and it is over $600/month.

    My youngest has been diagnosed at 18 mo and 24 mo on the autism spectrum (and also a speech delay, hypotonia and gross motor skill deficits), a separate diagnosis of a speech delay at 16 months, hypotonia and additional deficits since 6 months old. The county says every single evaluation from Children’s and Kennedy Krieger Institute is wrong and they have misdiagnosed my son. Again, no therapies are offered. Again, Aetna will not cover my child for anything beyond 25 total visits of OT and PT combined.

    We went into foreclosure trying to provide what little therapies we could for our two boys. And tutors. And educational advocates. And now an attorney. 22 looooong months of fighting for a modification. Three denials, a 40 day eviction notice, mediation at court. It has been a long, scary fight.

    We are now going bankrupt.

    We have no family that care. We have no family that will offer any help or assistance. We have no family who will even babysit one hour for us.

    My toddler is aggressive. He bites till you bleed, he hits, he runs away, he wanders, he is almost non-verbal, he bangs his head. The county says he is perfectly neurotypical.

    I cannot take my youngest out. He destroys waiting rooms. He runs away in parking lots. He screams so loudly in his stroller, in the restaurant, being carried that no one can have a conversation. If I pick him up he attacks me. We get the stares, the looks, the whispers, the nasty comments when we are out. We are stuck at home because he cannot handle going out. All appointments have to be made for when his father is home after work. All errands have to be done after his father is home.

    My oldest is depressed. He is also in Cognitive Behavioral Therapy at $120/month. Insurance actually covers this, minus the copay. He should be going to the psychologist twice per week but we cannot afford $240/month.

    I am constantly asking Department of Disabilities and every nonprofit I find for help. There is no funding or assistance. No one can help us. We are not eligible for Medicaid, state insurance or SSI. We, who may be foreclosed on, who have to go bankrupt, who cannot provide the therapies our boys need, make too much money!!!!!! How crazy is that?

    So, do I hate my special needs children? No. Not at all. They are my life; my sun and moon. I advocate every day for them. I fight for them daily. I beg for them daily. My heart breaks for them daily.

    I am stressed beyond belief. I am exhausted mentally, physically and emotionally. I am frustrated, angry, pissed and resentful. At the county, at Aetna (and every insurance company that does not offer autism and developmental delay coverage), at the school district, at our state, etc.

    I have my own health problems but I cannot afford to see the doctor for myself. I cannot afford the medication for myself. I do not have the time for the appointments for myself.

    We have not been on a vacation in 8 long years. I cannot remember the last time we went out to eat. I cannot remember when I did not have insomnia. I cannot remember the last time I was not scared – for our boys, financially, our future, our retirement (or lack of), for our very existence.

    So, I can imagine how Kelli and her family felt.

    Us special needs parents need more help. More money. More funding. Better insurance coverage. Better understanding. Better schools. More everything.

    This life is so difficult. But it is made so, not because of our awesome, amazing children, but the lack of everything because of our children’s special needs.

    Until you live this type of life, day in and day out, you have no idea what it is to feel as if you are living on the brink, like a volcano about to erupt, as if you are one step off of a cliff…

    • I am broken for you. I have lived this, I have watched this, I have heard similar stories a thousand times, and still I can’t keep from being horrified and so very, very angry. This isn’t OK. This isn’t right.

      Join us here if you like (other parents or caregivers of children with special needs are welcome to send a join request, too). I don’t know if anyone will have any answers or ideas but at least when you say what’s up, we’ll all understand you.

  • Jennie

    Thank you so much for your courage to speak out about this heartbreaking situation. I can’t tell you enough how much I enjoy reading your blog. As a mother of a son with severe mental illness, it is rare to hear someone speak from a place of deep understanding.

  • There are no words I can say that will match the depth and eloquence of yours but I will say this; I have been there.

  • I blogged off and on for a while, but found that the fear of someone finding out who I am and connecting the blog to my home life was paralyzing. Looking at my last blog post, it is so close in spirit to what you have written, yet almost unintelligible because of my timidity to face how I really feel. I don’t want to be that person, yet here I am. I don’t want to let go of hopes for a bright future for my son and for some financial stability for our family, yet… I can’t even go there.
    This is what I wrote when I posted the link to your blog on Facebook:
    I have been following this blogger for a while and am shocked by what she has written here. I have been wanting to write something like this for a long time but could not find the words, and I’m shocked by how well she has written about the relentless agony that some families face, and the isolation that mothers experience when their special needs child does not receive appropriate services. I began to feel extremely isolated when my son started crashing and burning emotionally at school in 4th grade, and realized that when I responded honestly when someone said, “How are you?” that would probably be the last time that person spoke to me, not because I was saying anything nearly as outrageous as what this blogger writes, but because people have very little space for someone else’s tragedy when it goes on and on and on for years. Cancer, a death, a violent one-time event — it is when things like those happen that people rally around to support the family. But something that goes on for years that requires lots of money from the school district to address — that makes pariahs out of children, mothers, entire families. I think it is partly because people can’t believe things can be so awful without the parents being somehow at fault. And because we all are busy with our lives, as I was before my son was in 4th grade. I was one of the mothers who had a hard time listening to the mom who just came out of an IEP team meeting, watching my friend weep, and hearing what was unbelievable to me, that the school was blaming her for her son’s ADHD and would not provide services. So I am not pointing the finger at YOU – because I am you. It is not us vs. them. It is all about WE, and how we define WE and community, and how we are going to require our politicians and our bureaucracies and our profit-centered insurance companies to respond to the needs in our communities.
    Jerri Newman recently posted..A Pattern. A Problem?

    • Can you hear me screaming YES YES YES!??? Because yes, exactly. I actually think most people have good hearts and want to help, but a crisis that lasts many years, and maybe decades, is more than most people can even imagine. I’ve written many times, that there is no us and no them. We are we, and if we throw some people away, we’re all the worse for it.

      Thank you.

  • What about those of us who don’t have a loving spouse, or parents who can fund schooling and whose child has now aged out of any concern by the schools or social services? To those who judge Kelli or anyone else-volunteer to stay ONE DAY with some of these kids–talk about PTSD.This writer put so eloquently what I felt for many many years–when there is NO PLACE for them the kinder thing often seemed to leave this world

  • Cheryl

    I have a son with HFA. I spent 2-1/2 years fighting the school system, the insurance company, and the medical community to get him the education and services he deserved.

    In my case I DID/DO have the money to pay for all of these services myself. I was put on waiting lists that were at a minimum a year or more out and when our name came to the top of the lists, I would then be told that since I was self pay, I wouldn’t be able to get a spot. They only accepted patients with insurance. I was willing to come, cash in hand, but yet was turned away. Our local children’s hospital wouldn’t agree to take my son on as a feeding patient, even though he was eating baby food at age 4. They “referred me into the community”. In other words, I was on my own. We’ve gone through several feeding therapists who didn’t know how to help him, and now at age 9, he’s still eating baby food, despite all of my efforts to find him the care I can pay cash for. The children’s hospital? Even though he is failing to thrive, they still won’t agree to see him. He still isn’t severe enough in their eyes to warrant their care.

    The school system, despite all reports indicating he had a normal IQ, despite admitting he wasn’t a behavioral problem, refused to put him in a regular classroom. Only after having him accepted at 3 private schools did they agree, and he’s been in one for 1-1/2 years and is thriving.

    Insurance company? Any time I’d submit a claim for my son to Aetna, it would be turned down with the reason of “autism is not a covered service”. Even claims submitted for ear infections, a cold, the flu, well child immunizations, etc. We now have a different insurance company, and I’ve learned my lesson – they don’t know my son has autism, and they won’t if I can help it.

    I no longer have to fight the school system since my son was transferred, and I’ve figured out how to handle the insurance companies. I still struggle with therapists, but I’m making way. However, the toll of that 2-1/2 year battle was huge on me personally. Every day, hours spent researching special education law, fighting to get my son in to see a good therapist, trying to convince people we could, and would, pay. Just give us a chance.

    Another friend who has done the same for her heavily disabled son stated she felt like she had PTSD. That’s how I felt, too. My fight was in no way what my friend, nor Kelli, or many other on this blog have shared of their fight. Nowhere even close. And I never came close to that edge so many speak of. But living through what I have, I can certainly understand the feelings expressed here in this blog and in the comments. That fight, and the ones that I know are still ahead, changed me to the core. It left me with a sense of desperation and anger, amongst many other emotions, toward the system that is supposed to help, but let us down in every way when we needed it. I know now I can count on no one but myself. I’m the one who has to do it all for my son. And that’s a heavy burden for anyone.

    The system is failing us all.

  • Jenny M

    “The system is failing us all”. Why on earth should anyone but you be responsible for raising your child? Why should I, as a tax payer, pay additional monies because you can’t train your kid? Why should normal children lose out on services because one child needs 24/7 care that their parents aren’t willing to give?

    No one forced you to have children. If you make the choice to have kids, you need to be prepared for the monetary costs or emotional issues that may arise from that choice. You may have a healthy child – or you may have one with downs syndrome/cancer/ etc. I am sick of people who want everyone else to pay to raise THEIR children. SMH.

    Kelli makes me sick. I hope she is punished to the full extent of the law. I hurt for Issy – but have to wonder why they had those kids, if they couldn’t take care of them.

    • Molly Franks

      I hope you never find yourself with your back against the wall. You sound like a heartless human being and I’m sorry for you. Your bitterness and lack of empathy will spill out on everyone around you. And so, I also feel sorry for them.

    • Jenny: You subscribe to what I call the “children as pets” theory of parenting. You had kids, you raise them! (The words “you lazy sack of shit” are rarely used but almost always implied.)

      In the world you create, we’ll need to re-build a system of dead-wagons and people to drive them. Thanks but no thanks. I’d rather pay taxes and help my fellow citizens create the healthiest possible lives for themselves and their families. If you don’t want to, that’s fine. Maybe you could move somewhere that there are few taxes and no services. I hear Somalia is pretty easy to enter. The babies die right out in the open. Real freedom!

    • It is interesting to me where people draw the line between what a person should pay for themselves and what we should collectively pay for as a community to benefit everyone in the community. Most people would not be able to afford to have someone teach their children to read, if they had to do it themselves, but we consider it beneficial to the community to have a citizenry who can read, so we all (even people without children) pay for public education through our taxes. Same thing with paved roads, animal control, firefighting and police services, national defense. I guess what Jenny is saying is that she does not consider caring for all children to be beneficial to her community. Good luck with your life, Jenny, and may you never find yourself surrounded by people who think like you when you are in need of something you can’t afford, like search and rescue, help getting on your feet again should your house burn down, care for a child with needs beyond what the parents can support, or any other extraordinary circumstances.
      Jerri Newman recently posted..Life and death issues

    • Cheryl

      I think you missed my point, Jenny. I am more than willing to pay for my child, and I have the means to do so, and I DO pay 100% for my child, out of pocket. The system fails us all when even those of us who DO have the means to pay 100% cannot get services they are more than willing to pay for because of lack of providers, silly rules set up by those providers (ie. won’t take cash payments), and providers selling snake oil just because they know they have a population of people who are desperate for help. When you have a child who could face serious health issues due to nutritional issues yet even when paying cash, no one will take your child as a patient because they’re not “bad enough”, then there’s something wrong with that.

      I can pay for my child and am happy to do so. However, I also understand that there are many now adults out there who, had they received a little bit of help when they were a child, could have become contributing members to society, helping to earn their way, contributing to the economy, but instead are now dependent upon SSDI. Why? Because their family didn’t have the money to invest in services they needed, they couldn’t find providers, or the providers were simply poor at their jobs. So, at age 18, they become eligible for SSDI, and if they qualify, taxpayers will be paying for them for the rest of their lives.

      Investing in these children is worth the money. Investing in all children is worth the money. It’s worth the money because they are a human being. And to turn your example around, why should I pay for a “normal” kid to get AP courses at a public high school? If you want your kid to take AP courses, pay for them yourself. Why should my kid or other kids miss out on things because your kid wants an AP course? Because your kid wants to play sports? Because your kid wants to be in the school play? All of those are extras I shouldn’t have to pay for, right? Parents should pay for those, right? Lucky for you, I don’t believe that, just like I don’t believe a child shouldn’t be allowed to go to music class with other kids their age just because they have disability.

      It seems clear that you do not have any children with disabilities nor do you love anyone with a disability, nor have you ever cared long term for a person with a terminal illness. If you did, you’d understand how overwhelming that can be day in and day out. How isolating it is. What incredibly hard work it is. Add on to that a person who is violent, who has attacked you and put you in the hospital, attacked your family members, and is strong enough to kill. I can’t even imagine. That’s why I cannot judge Kelli for her actions. I’m not in her shoes, have never been in a situation even close to that, yet do know how difficult it has been raising my son – and I have it easy. I know that. I’m grateful for that. As hard as it’s been, I know I have it incredibly easy compared to many people out there.

      I think it’s innate in all of us to want to take care of our own. However, there comes a time when everyone needs to reach out for help. The hope is that when we do, someone is there who can help. If not, even with full personal financial resources available no one can or will help then yes, the system has failed us all.

  • Rebecca

    Thank you all for sharing these things. I don’t have kids, and I don’t know anyone who struggles with the things you do, so this is a completely new world for me. (I learned about Kelli and Issy from another blog by chance.) My heart breaks for you all.

  • MammaLynn

    Jenny m.: Thank you for demonstrating your utter lack of knowledge & experience with the subject. You should consider exploring your profound heartlessness in therapy, you come off sounding like a person with a rigid view of humanity that has no room for anything you don’t understand. Of course, I could be overestimating you, you may just be a typical internet troll.

  • Adrienne,

    Bless you for posting this. Ever since this news story first posted, I’ve wondered if Kelli did what she did because she started thinking about her future, Issi’s future, and her family’s future– or lack thereof for all three. I suspect she saw no end in sight to what she had already endured for years– insufficient help, financial ruin, no personal life to speak of, no time to focus on the rest of her family, no quality of life for Issi, etc. In those circumstances, I suspect she might have been hoping to give the rest of her family the possibility of a “normal” life, which is what many people would hope for.

    I applaud you for your post. Well said!
    Ellen recently posted..Issy and Kelli Stapleton: Murder, Suicide, and Family

  • Teresa X

    I sincerely think that the school system that denied Kelli and her daughter ought to be brought to justice and Kelli should go thru long term therapy and probation. Ultimately the school failed them. It is unbelievable that they were forced to homeschool.

    • bs

      what? you really believe the schools failed them? really? the husband was the principal of the school so does that make any sense to you to sue him? his school? remember, the teacher was available and was was qualified. then she admitted stepping way out of line and browbeating the teacher b/c she wasn’t able to tell her how to do her job. don’t you see? it wasn’t the school refusing to help, it sounds more like it was the mom refusing help for her daughter. also, she kept saying the next school was 2 1/2 hours away. not true. the next school was thirty to forty minutes away tops. please don’t blame the schools in this case. put the blame right where it appears to belong, on the shoulders of the woman who allegedly attempted to murder her daughter.

    • bs

      also, remember that the daughter was able to successfully attend regular school up through the fifth or sixth grade without any problem. Does anyone here know whether or not that isn’t pretty unusual for a child to suddenly begin to act out aggressively after reaching age 10 or 11 without exhibiting any violent outbursts or aggressive tendencies?

      • Jennifer

        Okay, something feels weird here. Are you that special ed teacher who could not adjust her schedule to accommodate Issy’s behavior plan? You seem so strangely bent on attacking Kelli and anyone who has a valid point of support. Either way, you still don’t know the whole story, that is obvious, and you don’t understand adolescence and autism. Things change. My daughter is periodically quite violent and she was never like that as a little girl. Consider the possibility that you don’t know as much as you think you do.

        Also, please leave this nice lady’s blog in peace. She had the tremendous courage to share her story, most likely as a way to reach out to others who have found themselves in similarly dire states of mind. This should be a place where people are not scared to share their stories. You have nothing to say so far that will help anyone. I am not sure of your agenda, but it does not belong here. Do you understand that your reaction is exactly why people are afraid to seek help when life gets overwhelmingly hopeless and dark?

  • Teresa X

    Also Staceesmith who posted a comment, I am very curious about the level of information you are sharing. Are you caregiver and subject to HIPAA lass or are you friend? She was trying to kill herself and her daughter which says a lot about her state of mind: that she felt trapped, that she was abused by her own daughter, loved her and did not know what else to do. While I don’t think Kelli should be given a free ride, neither should she be crucified, and for every nail in her prison sentence should also the system that so terribly failed her and her child.

  • J

    I don’t think you have to have a child with a severe mental illness to understand what happened. You have to know what complete despair feels like.

  • DS

    Thank you for writing this. Some balance to the story, some empathy and understanding.
    I haven’t been at the edge… quite. But I’ve been close enough to be able to see how someone could feel that this act was the best solution.
    If I reached the edge and was unable to care for my son I can’t imagine giving his care over to some organisation. If I can’t manage the violence, with all the love that I have for him, how would some organisation, some business, care for him with love and compassion, without abuse and violence towards him.
    I can see how it could seem a reasonable decision to end our lives together rather than subject him to the kind of “care” I believe he would receive in my community at this time. It would seem like an act of compassion.

  • Donna O.

    Very well stated. My heart goes out to the Stapleton family and all families who have had similar experiences. I can’t begin to understand the complexities of raising a disabled child as I have not done so. I can only believe that Kelli was in a place where she believed she was doing the only thing left to bring peace to her entire family. I do not believe – after reading much on the story – that she didn’t love her daughter or that she wasn’t a good mother. She loved her more than she loved life itself. The fact that she was going to go with her says a lot. A very sad story and I wish the Stapleton family the best.

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