autism

Kelli and Issy Stapleton, the media, and the story that needs to be told.

Today I woke up, and in the haze that has followed me since Wednesday, I numbly got my kids ready and walked them to school. By the time I got home, I was soaked from the pouring rain. I didn’t realize that I had an unused umbrella in my hand until I put it down after walking inside. Freezing, I made my way to my bed where I now sit.

I looked for an update on Issy Stapleton. I wanted to know if she’s okay. If she’s regained consciousness that was stolen from her just days ago.  The Team Issy page on Facebook hadn’t posted anything new, but I noticed something- it had at least a thousand more “likes” to it.  Before this, every follower on that page had been fought for. Kelli had worked tirelessly to get Issy’s story out. To raise money for her care. I know this, because I worked with her and a friend of mine to get her story on CNN.  That didn’t happen.  Kelli had petitioned news outlets, television shows and even Dr. Phil. She begged and pleaded for some attention.

Today, she got it. As I moved from the Team Issy page to Google to look for any update, I noticed that her story has been picked up by most of the major news outlets. Not the story of a mother who had been fighting the system for years and years trying to get better care for her autistic daughter. Not the story of a beautiful blonde fourteen year old autistic girl who had been denied services time and time again, from the state, from insurance and lastly, again, from the schools. No, the story now being told is of a mother that did the unthinkable. The unconscionable.

I could grapple for months with the knowledge only that my beautiful, vibrant, strong, sunburst of a friend tried to kill herself. I could seethe in rage at her for just that. How dare she take the only mother her children have? How dare she stop fighting? How dare she not tell anyone it had gotten that bad? How dare she leave us? But all of that emotion gets grossly conflated when you add in the horror of the other choice she made that day. She tried to take her daughter with her.

There are no words for the emotions we all feel for that.

The news outlets I read are missing the point. Sure, it’s sensational to see this all-American woman sent to jail for the absolute worst crime a mother can commit, but that story will soon fade away. It will be moved from the front page to the back, maybe with a blurb about what a victory it is that she was found guilty and sent to prison for the rest of her life, but that is all.  We will be left worse off than we were before, inside the autism community and out.

The story that needs to be told is one of an amazing fourteen year old girl who struggled to live in a body that raged beyond her control. A girl who wanted to fit in, be loved, and be herself, but couldn’t quiet the storm within her. People need to know how hard her parents fought for her. No stone was left unturned in her care. Time and time again they were denied access to treatment, to care, to school programs and to hope. They lived life on the highwire of special needs and had no safety net for when they fell. While we can have no sympathy for the last choice Kelli made on Tuesday, we do need to understand what led up to that. We need to get the message out that parents need a safety net. People with autism need easier access to the services they need. They need to be treated as equals, because they are equals.  Parents need advocates. We need to feel that we can be open and honest about autism without being vilified as horrible parents who do not accept their child for who they are. We need to know that people care. And we need a break. A minute to take off the responsibilities of care-taking, parenting, therapist, advocate, and punching bag.

This will keep happening so long as we focus on the crime and not on the criminal and the victim. We need to focus on what we can learn from this to prevent it from ever happening again.   If we do not understand what caused Kelli to break and work like hell to fix it in our own communities and in the system, we are all at risk for it.

All of us.

52 thoughts on “Kelli and Issy Stapleton, the media, and the story that needs to be told.

  1. Thank you for writing this Lexi. Something I hadn’t thought about in the midst of the disbelief and anger of the situation. You’re right. We have to fix what is broken, or this is going to keep happening.

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  2. Very well said. I think that we are all so wrought over this now that we are going against each other instead of finding a way to come together and work so that it doesn’t happen again. So sad but you’re right, we’re all at risk…no matter how hard we try to deny it.

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  3. Thank you, I couldn’t agree more. All that stands out to me is how much she fought for Issy, how much of an advocate. How many times she was let down, turned away. The constant struggle. I don’t agree with what happened , but I can’t help but feel sad and frustrated that it came to this. That breaking point. How many times have we read someone else trying to get help and not knowing where to go , what to do. That was me when I started this journey and now it’s happening again in his teen years. Do we honestly know how long we can fight this fight ? I’ve seen the negativity and nastiness in comments , I’ve seen the petition to have her charged, outcry from “the people”. Where were those people when she needed help ?? Only those of us sharing the struggle will understand the real message here.

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  4. Keep telling that side of the story and encourage others to go there, as well. Sensationalism and provocative TV and radio headlines are short lived if they stay on the wrong side of the story and serve no purpose but to inflame the public rather than inform. The more people who don’t get sucked into that death spiral, the better. We need better.

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  5. very well said Lexi.. i am of course not speaking for everyone that has a child on the spectrum or with any disability but i can see where Kelli ended up and so hate that she could not find the strength to move forward and the get the help her or Issy needed so desperately to be able to carry on. this obviously was a mother that loves her child and cares for her and went to great lengths to help her. at some point i believe it is a passing thought for alot of us that care, love and would do anything to help our children and this was sadly her way of doing just that. i often wonder when my wife and i pass or can no longer take care of our son just who is going to care for him and will he end up in a bad place, homeless, abused, or any other possible outcome. of course it is a passing thought on what some of my conclusions would be to “help” him but then i just pray and ask God to take away my concerns and worries and deep down i know God is going to take care of him but we all see the horrors that some on the spectrum endure and of course none of us want that for our children. guess i am trying to say maybe that is the place in her mind and heart she came too… that taking Issy’s and her own life would prevent anymore hurt and pain. i truly believe she did it out of love for her daughter with no vicious thought. we all need to pray for and support one another because truly we are the only ones that can relate or understand. we are praying for this family and it may be wrong but i pray that Kelli is not punished and she can get the help she needs to return home and be with her family. God has a plan and we will all have to watch to just see what that is.

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  6. Realistically, we the mothers whom will be honest and say the truth. I know why or how she would take Issy with her. BECAUSE for the very reasons you wrote up there. She had fought the fight over and over and over. Everyone is saying she should have gotten help. I have been there am there. How many times can you call for help only for them to treat you like a bad parent and your child like an animal. Have your child held down by a police officer by putting his knee in her back. Then held down by five men and hand cuffed to the gurney. Then the dreaded bag be put on her head. All for her to be taken to a hospital which is the unsafest place with all of the concrete and tile. To be left in the room for hours for the dr. To send you home five miserable defeated hours of your life. You can’t get help. After the twelfth of so time you do what is the hardest thing of your life. You say yes to the mental institution. Your child is doped up roomed with others doped up. Wrapped in burrito rolls shot up with benedryl. Then yep sent home with new issues like tics because they took her off of a mind altering narcotic too quick. Then you have meetings where still there is no hope given. You talk about new mind altering drug that they know nothing of what it will do because you have to take them home because your insurance will no longer pay. All you want is answers help what more do you do. You go home sigh and start over at that point all you want is to bring your baby home where she is safest and you know how to delicatly walk through the never ending road of eggshells that keeps your baby “SAFE”. Why did she think the safest place for issy to be was with her…..well isn’t that what system has conditioned us to believe or for a better word KNOW. Lets be for real… we need more than we are given. My daughter is mentally disabled…such a nice term to say. When in reality it means we are locked in our house. She spends four hours a day five days a week on a bus to go to a school that can “handle” her. Do they help why yes they do but only till she is 21. Then she will be locked back in our house until I can fight for her to find another place she can be hid from society. Along the way you lose all your friends because they don’t understand even if they try they just don’t. You can’t go to dinner without ten calls from your child and five from the siblings you left them home with because you have brought these children into this lonely world because be honest they don’t get to live a normal life either. They grow up scared to have friends over. They grow up being bit and hit and scared. You begin to see the pain in their eyes. You begin to see the fear you see the hate of why did this happen to their sister. Your daughter tells you she will not have children because she could have an Amber. Why did kelli want to take her away. To stop the pain to let her other children live. To let her husband be able to raise them with laughter one day. To take away the pain. Is it right hell no. Is it right for her other children. No but as a mother you are willing to die for your children. And why would she leave Issy in an uncaring life with no end in site. Was it right no ofcourse not but that is what life is like. That is the reality. Not calling a social worker in to help. I had one come once a week she sat and told me about her midshipmen that she housed. And those doctors that tell you that your eight year old daughter is faking her seizures. How tired and beaten down can you get before they finally after four years tell you all along your daughter has a smooth brain and you are lucky she made it as far as she did. In the end do you know who that child has to depend on their MOMMY!!!! Everyone around is screaming something is wrong call this person call that someone has to know. There has to be a medication that will work. In the end it is mommy up all night rocking their baby begging god the world something anything anyone to help. One day mommy will die who will take care of your baby!! No one has done it….. so far. Do you leave your other children with this heart breaking deep unbearable pain. I dont think she was right. I do know I have wondered what will the end be like for my baby and myself. I wonder a lot. Right now today we are good. We went through ten months of intensivr behavior therapy where I really learned who my daughter was. Today she is on her way home and I am wondering if she was able to change her menstrual pad or did she even put another on. Tomorrow I will have to sit and chew my nails when she has had enough and needs to go for a walk and I have to sit and worry she was hit by a car or someone talked her into their house because she is a beautiful young lady but our life is hard and there is no real help there isnt even a place we can go beside our home.
    Yes your right there is a need for a safety net but there isnt anything out there that is even a paper towell to stand on.
    So in my mind Kelli was being a mother she was doing what was the end of what she could handle. It is not her fault she was conditioned to believe there was no other way. I am sad for issy for kelli for her husband and for her siblings. It is awful but there will be more kellies and issys because as you said this will be an after thought minths from now when it happens again. Because the safety net wont be there. Mothers will continue to be mothers and love their babies… to death.

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    1. Except for the fact that:
      1) Kelli was coming off a 6+ month reprieve from Issy, who was discharged from residential treatment all of 36 hrs before the attempted murder.
      2) Kelli had trained, paid by a Medicaid waiver 1:1 staff for Issy for all her waking hours.

      Kelli was about as well-rested and service-provided as any autism mom on earth … yet still tries to kill her girl. I can’t think of ANY service that would have prevented this tragedy.

      Perhaps somebody else can enlighten me?

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      1. I agree. This mother had the gold standard of support for her daughter. Yes, she had to fight for it and it shouldn’t be that way, but she did get the support which is more than many families can say.

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      2. I’m not just asking about services. I want to know ALL of it. I want to know what happened in Kelli’s brain. I want to know if her pattern of rigid behavior in seeking help for Issy had something to do with it. I want to know about her mental state. I want to know if there’s anything we can learn from Kelli that would prevent this from happening again.

        Was Kelli Mother Theresa before this happened? Heavens no. We have to figure out who is at risk and who isn’t . This wasn’t just a system issue, there was so much more to this. That’s the problem, too. Too many people are making this out to be a simple “She killed her daughter because her daughter was autistic” and that doesn’t create ANY WAY to see signs, to intervene and to protect children.

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      3. No. Just NO! Do not mistake my empathy for sympathy here. She was not on a six month reprieve from her daughter. She was at that facility all the time learning how to be a new and better parent for her daughter. She was still WITH Issy all the time. Did she have more help? Yes. Was it any less physically draining? Probably not. Not to mention, the fact that while Issy was in this facility, she was constantly fighting for her funding, trying to ensure her school placement, and still playing the role of wife and mom.

        Also, consider this. for 13 years, the child you love above ALL ELSE has beat the ever loving crap out of you, hospitalized you, screamed and cursed you. EVERY DAY. What services were in place for Kelli? Living in an abusive home, because THAT’S WHAT IT WAS, for that long, is going to take a toll on anyone’s mental health. Where were the services for Kelli? Maybe YOU can enlighten me on that one.

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      4. Lexi – yes, yes, yes! Someone, somewhere needs to figure out what the signs of a mom or dad on the brink are and figure out interventions (for the parent, kid, family) based on it.

        Becky – If six months of residential treatment resulting in a 90% decrease in violence by the autistic kid AND paid 1:1 in-home paid, professional staff for said kid upon discharge does not provide “physical reprieve” for Kelli, then why did Kelli fight so hard to get it? If all that help isn’t enough to overcome the 13 years of “living in an abusive home” that preceded it, what would be?

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  7. Thank you for writing this. It’s so awful and yet I find myself filled with so much compassion for her. We knew how much she struggled. This is just too sad and too hard. I feel so bad for her husband right now. Everything is now just a million times worse. I hate that she has to live with that for the rest of her life. I just want to throw up.

    I’ve been sitting here staring at my keyboard trying to find something to blog about regarding this. You hit the nail on the head.

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  8. Well, said, Lexi. It is horrible but so is all the hate. Reading through Lynn’s passionate (and somewhat desperate sounding) comment leaves you wondering how many parents out there are hanging on by the proverbial thread. It also makes me wonder who the next one will be to succeed. 😦

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    1. Thank you for your honesty. I cannot say that I have ever read anything more powerfully describing the brutal reality that love brings with it.

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  9. It is no longer enough to just say “don’t kill or hurt your kid.” Change has to be made, not because raising a child with autism is inconvenient or hard, but because there are times when nothing seems to be helping. When “forever” looms too large. To protect the kids and adults with autism, we need to do more. The state of services in this country – for all members of the family – is so very broken.

    It isn’t enough to vilify. There is no excuse, but there are reasons. Now we have to find solutions.

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    1. Cognitive dissonance.

      Here’s what I don’t get: Lexi condemned Alex S’s mom (whom she did not know) for killing him — because, well, unilaterally deciding your disabled kid is unworthy of life is pretty evil). Lexi knew and was friends with Kelli, thus her attempt to kill her daughter because the girl was autistic was a sort of cry for help, a need to talk about providing support to parents of kids with special needs (despite Kelli having had basically every single support on earth — except the school placement if her choice, which could have been appealed).

      It is kind of like this case, where this mom has a helluva time wrapping her brain around the fact that her son’s wonderful drama teacher is a rapist (despite TONS of evidence of guilt, that she mentally set aside since he was a “great guy”):
      http://mobile.nytimes.com/blogs/parenting/2012/03/30/when-a-beloved-teacher-is-also-a-rapist/

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      1. I agree. The similarities between Dorothy Spourdalaki and Kelli Stapleton are quite striking.
        Both had children that were 14, autistic and commonly very aggressive. Both had been fighting for their children for years. Both had been doing everything they could to get the media’s attention, so their children’s cases would be taken seriously. Both were turned down repeatedly. Both of them had to face circumstances that most of us are lucky enough not to know the severity of.
        Yet, I didn’t see you call for the media to get the story right with Dorothy. You write with a totally different tone when it comes to Kelli. The truth is that their cases are very much alike except that there was a picture of Andrew Wakefield somewhere in Dorothy’s case. That kind of ideological positioning is hurting our community.

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      2. It’s different when it’s someone you know. I’m working all of this out in my brain, and you’re right, there’s some cognitive dissonance.

        I’d ask you to be empathetic while I process all of this, but I’ve gotten little of that lately.

        I have not said anywhere that she was justified in her actions or that it was anyone’s fault for her choices but her own.

        But tell me honestly, how does that help prevent the next person from doing this?

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  10. This was so well said Lexi, I still can’t wrap my brain around the fact that this Kelli is the same Kelli I have talked to so many times before. I just can’t go there and think about the desperation she was facing and what led her to this point. We’ve been transitioning to adult services and when I asked our caseworker if there are options when things get to rough over here, maybe somewhere we can call when we need an immediate break she said “we don’t have that.” To me, that’s just not an option. Autism parents can’t be told no anymore.

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  11. Yes, yes, and yes. The media seems to think if we move past judging right and wrong and focus on hw and why that we are defending Kelli and failing Issy. I think if we keep lfocusing on the problem, we are going to continue only to waste our energy. We have to understand why if we want to know how to stop it. We have to stop letting others guilt us out of being understanding. We don’t have to condone what Kelli did but we fail Issy if we aren’t trying to figure out the why. While this tragedy seems senseless, there is something redeeming in it. Kelli and Issy’s journey are explicitly chronicled. So many of us will sit down to a crime novel and live it up; enjoy learning about the criminal mind, the psychology of “crazy” or “desperation” but when it comes to well, I guess we could call this infanticide, we close our eyes, shut our ears to want to hear no moreabout the means, but only the end. And if we keep doing this, history will repeat itself. Alex yesterday, Issy today….who is counting the mnutes until we see tomorrow’s mtragic end? http://higgle-e-piggledy.blogspot.com/2013/09/the-status-woe-and-status-quo-if-there.html

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  12. I have been down in the dumps of depression caused by fighting the system. My 8 year-old has cerebral palsy and autism. It is a rough day, even with the services she receives. My elder daughter is high functioning and smart enough to fake it at school and we can’t qualify her for anything. The system that was created to help families too often smashes them to bits.

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  13. Issy (and Kelli) were failed in countless ways by the layers of systems that are supposed to help them. I can’t find anything in my heart but immense sadness for everyone involved. I hope if nothing else what happened will be the seed to start a quiet revolution to improve the available care for kids like Issy – and like my son, and all the other kids who are being failed by those who are supposed to help them and their families.

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    1. Kelli had pretty much every single support known to mankind: 6+ mos at the special autism boarding school, Medicaid waiver, funding from said waiver for PCAs for all of Issy’s waking hours who have been trained on the behavior plan, trained volunteers to help out, space at a nearby church for Issy to work at weekends (as she’s less aggressive when kept busy), loving family/hubby.

      Yes, she had to fight for these resources… but she was more successful in acquiring them than 99.9% of parents!

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      1. Right. But the fighting is still a huge issue. That wears on a parent. I know from personal experience. Does it justify or lesson her choice? Absolutely not. It’s why we need to look at services and Kelli. What in her brain made her think that to kill herself and her child was the only choice when she had SO MANY OTHERS to choose from? We HAVE to understand what got her there, from the system to the thoughts that were swirling around her head. What made her justify the unjustifiable? We need to know so we can help other parents and protect other children.

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      2. Maybe she was worn down mentally….everyone has a breaking point and everyone mentally would snap under that kind of pressure eventually. It is easy to judge but not so easy to try to understand someone breaking down and becoming mentally unstable because of immense emotional and physical stress with no end in sight..

        For someone to take their own life they are desperate….she didn’t just try to kill her child she tried to kill herself too…thats is utter misery and desperation.

        I wonder if the help had been there earlier on and she had not had to fight so hard for it and suffer for so long whether or not this would have happened?

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  14. I too keep searching through the news stories looking for those elusive threads of hope. Hoping that Issy and Kelli and their loved ones finally get some of the support they so clearly and desperately need. Hoping that some good can come from such a horrifying situation. Hoping, most of all, not to lose hope. For them, for us, for so many who are cherished by so few.

    What shocks me most is the argument I’m hearing over and over again that there is no room for compassion. “We wouldn’t spare any sympathy for a parent who tried to kill their neurotypical child,” it goes, “so Kelli doesn’t deserve it either.”

    I disagree. No, I *RAGE* against that point of view. Not only does Kelli deserve our compassion and our prayers, so does every parent, every sibling, every neighbour who struggles and suffers and finally reaches the ultimate breaking point. Regardless of the circumstances.

    Why do we need to vilify *anyone*? To reassure ourselves that we can’t possibly go down the same road?

    Monstrous deeds. Never monsters.

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  15. I work in as a homecare nurse for kids with special needs and it is always in the back of my mind to add proof in my narratives that our clients and their families need nursing assistance. We have to complete care plans goal results on every visit and when I can truthfully chart, “Family able to provide adequate care for child.”, I now try to add “… with nursing assistance.” out of fear someone up high may read ‘able to care’ and yank nursing care on them. Because someone always wants to make even deeper cuts into the existing ravine in services provided for special needs families. It sucks.

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  16. This is lovely, Lexi. It is wonderful for you to stand up for your friend and all mothers of special needs children. Being a mother is not as cut and dried as some people think it should be. Yes, we love our children, but our feelings are also very complex. It shouldn’t have to be so hard. I think if autism is on the rise and is going to be so heavily diagnosed, services and support need to be increased. I took my 9yo son to get retested (supposedly all he has is ADHD, but for years I have suspected more) and the doctor immediately jumped to Autism. If that is what it is, I will be looking for support and services as well. I can’t imagine feeling like you’re screaming and no one is listening. My heart goes out to Kelli and her family, and I am praying for them.

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  17. I am so distraught by this story. I wonder if anyone has thought about the fact that two sides of this story haven’t been told yet? A mother that can attempt to murder a child needs to be questioned. A mother that sends a child to school everyday for a week in the same clothes needs to be questioned. A mother that spends all of her time on blogs sensationalizing a story while neglecting her children needs to be questioned. Maybe, just maybe, this isn’t a mother that any of you really know. Maybe instead of hailing her again as an incredible mother, you should wait for the investigation. I think you will be taken aback to hear about this “terrific” mother you assume you know. Maybe the fame that came along with the sensationalism was an addiction that someone may get accustomed to and desire. All in all, when a child is hurt, we shouldn’t rush to judgement or defense. The ultimate victim is the child, the child who is still unconscious (bigger in size than her mother) while her mother is fine in jail.

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  18. Not one person on this blog has stated they believe that the mother was justified in what she did. We are trying to bring this to the forefront of lawmakers that make the laws that the insurance companies have to help this mental illness as pertinent as any other disease/disorder. I know how it feels, I have been beaten by my daughter, kicked with all her might in my crotch, pulled down a set of stairs by my hair, bitten till she drew blood, fingers spranged, have ran from one end of the house to the other getting to the door before she could so that I could keep her inside to continue to beat me so that she would stay safe in our home and not run out in the middle of the road or get lost I have taken her to hospital doctor after doctor to not get any help. I have laid and held my daughter after a rage and cried with her weeped with her. I have made phone calls I have begged for help. So you see that is what is trying to be said WE COULD BE HER because that is all she did figh and fight on all sides. No one is here to condone it. We are trying to scream HELP these children!!!!!!!!!!!! Not the mother. Don’t you stop at condemning Keli ….YOU d something to help these children THAT is what we are begging for!!!!!!!!

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  19. I am sorry for saying “we” I am just heartbroken listening to judgements and hurtful things being said. I hear people with autism saying their mothers are splattering their lives on the internet. I don’t think we are talking about the same side of the spectrum here. One man stated he had autism and so did his son. I know my daughter will not have children. She is not high functioning she can’t express with words she doesn’t connect overwhelming anxiety with thr ability to stop her actions. So rather then tell me what I am not doing or what I am doing wrong. Please don’t ever tell me I am sensationalizing my daughter and wanting sympathy. I want help. I would give anything to you if you could let me live one day in my daughters body so that I could help her. Please tell me what it is like. I have been begging for that. My child has autism well she has autistic tendencies and a very low IQ so she is different but please stop the judgement and tell us how do we or I should say me and not speak for others. Tell me how to help my daughter. There is no one else in this world that loves my baby more than me. You see I live my life for her because she is my baby I am her mother and there is no one out there that does what I do and would do for her. I have begged for HELP..UNDERSTANDING…HELP ME. I AM ASKING AND BEGGING for understanding if what my daughters thoughts are how can I help her. Please remember she is not high functioning and NO I will not put her in a mental hospital and I have and still do work with kennedy kreiger and john hopkins. I want your advice! We all do. Help us help the children.

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    1. Putting her in a hospital is preferable to killing her. How can you say you would never put her in an institution without feeling equally confident you would never kill her? The one option is clearly SO MUCH WORSE than the other.

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  20. We are not all equally at risk of killing our autistic children. That is preposterous. No absence of services causes murder; murder is a choice that Kelli made and I won’t. Rather than seek mental health services for herself, rather than put out a plea that one of the thousands of people on “Team Issy” take her daughter for the afternoon while she sobbed and raged in peace, rather than killing herself, she attempted to murder her daughter. Please stop normalizing this. It isn’t normal. If you or anyone you know is seriously contemplating killing your children, stop everything you are doing and get immediate help. Check yourself into a crisis intervention center, call the police and say you fear you are a danger to yourself and others. The idea that Kelli had no other options because her insurance company would no longer pay for inpatient ABA services is just one more way of saying that what she did was understandable. It isn’t; it’s abhorrent. I say this as an autism mom who is tired of seeing my son’s life categorized as expendable.

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    1. Isn’t that the point it is NOT normal to reach a mental point where DEATH is preferable to life? The mother was past normal reasoning.

      I dont see anyone defending the mother here. I see people saying how could it have been prevented? How could the slide from normal but stressed into full blown mental disease have been avoided. No-one really understands mental disease yet, not even the professionals.

      And unless you have reached breaking point yourself and had a complete breakdown mentally how would you know what you would do?

      I think the point is that support is needed for these mothers but also that the entire population needs educating to the fact that it COULD be them. That they COULD be the one to end up mentally deficient and consequently making disturbing desisions and choices. And more importantly people need educating on the signs of mental disease and how and when to get help.

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  21. When my daughter was in sheppard pratt. I did not sleep. I did not eat. I called every hour to see how she was. Then the guilt eats you!! As I stated I am not asking these questions pertaining exactly to Keli. I am saying I as a mother that has a child that I love with every fiber of my being who does go to great lengths to try to find help. There are no services to help. What do you do when your child beats you? The feeling of total helplessness I am not talking depresssion or fatigue. I am asking what do I do? My life is about keeping my child safe. When she rages it takes my husband who is 6ft myself and my 6ft son to hold her down. We live in our house and go no where because people look at me like I am a bad parent with a spoiled bratt. When in reality the music in the store is too much for her to handle but we need toilet paper.

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    1. Lynn – If you could not sleep, were overcome with guilt and felt compelled to call SP hourly when your daughter was in the hospital (safe – she couldn’t harm herself or attack you), then clearly YOU needed to see a doctor. For insomnia, for depression, for some kind of OCD. You needed to use the opportunity to put on your OWN proverbial oxygen mask, otherwise you will not be able to function, let alone give your family or your autistic daughter the support they need.

      “Please remember she is not high functioning and NO I will not put her in a mental hospital and I have and still do work with kennedy kreiger and john hopkins. ”

      “Only MOMMY!!!”

      “Burrito roll shot up with Benadryl”

      “Mental institution”

      Honestly, Lynn, you sound exhausted and desperate and this business of “nobody understands or can take care of my baby but meeeeeee” is scary. Like, scarily close to the kind of person who decides it is an act of mercy to harm their kid rather than seek help. I see that you love your autistic daughter so very very very very much. I get that you’ve run into a million dead ends in seeking help/care for her but you do sound scarily desperate.

      Sending your girl to the hospital, even a dreaded mental institute (Johns Hopkins? Kennedy Kreiger? Have excellent reputations and are known for providing world-class care) while you out in your OWN oxygen mask is a million tes better than harming yourself or your beloved girl.

      I’m praying for you. And your girl. And your whole family.

      Please take care of yourself.

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  22. Apparently you are reading things I am not saying. First of all I said I live with a daughter that rages like this. I put her in an institution they drugged her up and lied to me about her care. Yes being home with me was better. I am not going to kill my daughter. I am not saying keli was right. I am asking how do we help children who rage?????? I had no idea other children even did this. I went two years thinking only my child did this. I didn’t even know what to call it. I spoke with teachers doctors they never even used the word rage. So please don’t comment to my comment with absurd comments that I think issy should have been killed because then you would have to kill my child. I am asking what do we do? I am a parent with a child that beats me and her family. What kind of therapy or where do we go? Dont tell me to put her away. That is not an option for me. I love my baby and she is a sweet soul that loves her family and we dearly love her. I will continue to fight everyone for her especially those that want to judge me but not offer any help. I don’t need you to babysit her either because quite frankly I would be afraid she would hurt you and then you would probably sue me. I will continue to be her mommy. I will also be here for those other mothers that are living the hell that they can’t take their child out of so we choose to walk beside our babies.

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  23. Janina thank you for your concern. It is appreciated. I have come to terms with this whole blog back and forth. I have come to the conclusion that you can tell which parents are on what end if the spectrum. I am not going to argue my point. My daughter and I have been in a good place for a good year now. Although, this afternoon she took off from my mothers house and crossed a dangerous road. (So it is a daily up and down) I will add one opinion about john hopkins and kennedy kreiger. They are well known, yes. It depends on what doctor you see. We went through six of those famous doctors even world renowned doctor shapiro whom all said my daugbter was faking her seizures when in fact she was born with a smooth brain. As I stated the only thing that helped was my flighting for years and finally beating down the doirs if the NBU and me myself working on learning behavior techniques that something finally started to give but as I stated it is a daily life we live andnit is moment by moment. I don’t expect anyone except for the few you can tell on here that actually lives this lufe to fully understand. You know that’s ok with me too. I know what I do. I see a doctor.I have the ability to fight this fight. I will tell you you are completely WRONG I will repeat WRONG about Sheppard pratt. That place was awful. They did nothing. They had one person come out and tell you one thing happened then two minutes later they said it didn’t. The doctors there took her off if a medicine that should have been weened off of for a month they did in two days. She wound up with awful head bobbing eye twitching tics. All of this also happened two years ago. I wrote that as the memories of how my life was and how I felt. As a mother you say that I should put the oxygen mask on while she was in there. Yes I can see how you feel that….know the ol’ saying if the plane is going down who do you put the mask on you or your child. The answer is yourself so you can save them. Sorry but I have been there. I chose to share the oxygen. Thank you for your response. It is appreciated but I would be shocked ti kniw that you actually have a child that rages and has gran mal seizures and extreme anxiety. I just don’t hear it in your reply but again thank you. My daughter is also mentally disabled she just has autistic tendencies so I can relate to needing a routine. Sensory issues and such.

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    1. @Lynn: You still sound scarily desperate and on the brink and in need of your own proverbial oxygen mask.

      Doctors? World class doctors? At highly-regarded hospitals?? All of them suck? You know better than every single medical professional you’ve encountered as you seek treatment for your girl? World-famous Dr. Shapiro was horrible — even good doctors have bad days, or fail to “click” with certain patients. Happens in every profession, that’s what second, third and fifth opinions are for.

      But every single doctor has been useless at every facility you’ve ever entered? You never ever accidentally stumbled across a doctor who was fabulous and helpful and “got” your girl? Ever?? It is STATISTICALLY impossible to ONLY encounter horrible doctors, when you are seeing so very many of them — the law of averages dictates that you’ll come across a good one ever so often. Where the only common denominator (different specialists, different hospitals, different health centers) is you??

      (An imperfect analogy: You are out for dinner, order a salad and as you are about to take a second bite, you find a bug. You:

      1- remove the bug, keep on eating the salad. It’s just a little ant!
      2- alert the waitress, then celebrate. Free salad! Maybe she even throws in a free dessert!
      3- do a multipoint inspection of every leaf of every salad you order at a restaurant for the rest of your life. Talk about your ‘lettuce issues’ ad nauseum.
      4- freak out because you find there’s a bug in EVERY salad you order, EVERY salad you eat, even at home… and fail to notice that the bugs are on YOU.)

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  24. Sandee I find it funny you followed me to my blog and have a go at me about what Services Kelli had at her disposal, when I was asking that very question? How do you recognise when a friend is THAT exhausted. If you read my post properly you would see I was talking about emotional exhaustion as much as physical exhaustion.

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  25. There is never anything inherently wrong about having unconditional love..empathy…compassion..for other humans otherwise we could torture killers for sport…civilized humans do not do this.. As far as autism goes when the symptoms of this empathy related disorder moves into the realm of trying to impose a personal deficit in expressing or feeling empathy on others not only is it manifest as disorder but it is also manifest as harmful and yes potentially dangerous too..

    I am sorry if this sounds offensive but i am autistic extremely intelligent but have been extremely unintelligent when it comes to human empathy; however now in effect I am an expert and have even found a way to close/cure my empathy deficit as I score 11 on the AQ test as opposed to 5 decades of the 40 range…

    This heated conflict over when it is appropriate to show empathy is being fought by people for the most part do not even understand what empathy fully is and no one here is going to be able to fix that but them if they ever do and quite frankly most will not at no fault of their own..

    The only long term resolution I see is to understand that many autistic people do have very serious problems with empathy there is no question about that in 60 years of research… And to simply ignore them when they unwittingly try to impose their empathy deficit on your unconditional intrinsic human love on others no matter what fall they may take in one’s imperfect land mined human life…

    Hatred makes for an productive past time my friend but there a relative few autistic or reporting as such online who are engaged in hatred as a full speed special interest so please for your own peace of mind consider the source as these are the last people in the world we need teaching other people to hate a little more and love little less as this is exactly in effect what Paula, Lydia, kassiane, sharonandrobfromtpgawhocouldautistic and their relatively few minions are asking you to do….

    OH MY GOD this is ridiculous in my little opinion the world needs more love JESUS CHRiST!!! not less love I mean WtF give me a break don’t even listen to this folks pray for them or something of that nature instead if you will…:)

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