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Did the System Fail Both Kelli and Issy Stapleton?

The autism community is reeling from the news of the attempted murder/suicide by Kelli Stapleton, toward her daughter, Issy. I know I was reeling. I was literally sick over it, because I know her. At least I thought I did. And I was so angry with her, angry that she stopped fighting, and angry she didn’t reach out for help. Initially I didn’t want to contribute to the slew of posts and articles swirling around. I’ve spent the last few days thinking about the situation, mulling it over until the headaches forced me to sleep.

But for all that’s been written, either condemning her as a monster or empathizing with their situation, I felt like there was something missing. Between the two, there’s a story of a support system in disarray. And at times, a support system that just isn’t there. There are broader ramifications than this one family, because this isn’t a new story. It’s not a new occurrence. It’s become frighteningly common to hear about an autistic person being abused or murdered by a parent or family member. There has to be more to it than just a “bad parent” making a bad choice. So I decided to write and explore the questions and circumstances.

I’m not going to defend her actions. I’m not. There’s no defense for harming a child, we all know that. What I’m most interested in are the events that brought her from here to there, because if we can’t figure out how a 45-year-old woman with no criminal history, no history of aggression, and a pillar of her community got to a place where she would harm her child and herself, then we have very little chance of preventing this kind of thing from happening again.

Now I’m well aware that many advocates will say that no one should even be discussing the circumstances leading up to this because all we should care about is the crime perpetrated against Issy. Well I, for one, do care about that crime. I care a lot. But there is much more at stake than just justice and punishment. I don’t ever want there to be another story of an autistic person being murdered or abused. But it is not just remiss, but negligent, to equate Kelli Stapleton to any other run-of-the-mill person that attempts, or actually does, commit murder.

Some people commit murder our of revenge or a jealous rage, or in the midst of something as common as a robbery. Some commit murder because they’ve endured years of being abused and battered by a spouse. Whatever the particular case, we learn these factors because the cases are investigated to understand the motivating circumstances.

While none of us was there in their home or privy to their personal lives, we have a lot of information available that was posted on Facebook or Kelli’s blog.

We know that Issy just completed treatment to address behavioral concerns, particularly, severe aggression. There is a post on Kelli’s blog, the Status Woe, that includes a picture of the data tracking report from the center. The data clearly shows that during the first week, there were about 650 instances of aggression. Kelli asserts that this mirrors the behavior exhibited in the home. That’s roughly about 93 instances of aggression PER DAY. Now if we accept this as legitimate, then we must ask ourselves what effect this kind of environment has on an individual who lives with it for YEARS. Every single day, hitting, kicking, biting, scratching, punching, over and over again.

It’s easy to dismiss the report as being exaggerated, or to say that Kelli exaggerated the behavior. But there is also video proof of the aggression. The following video is from the facility’s camera, taken during a session where Kelli was asked to sit down with Issy and reward her for quiet hands and feet, and for coloring with her. There is no audio, but it’s clear that the aggression was as intense and sustained as reported.

And before you say it, NO. No, it isn’t a reason or excuse to do what Kelli did. But this post isn’t about just repeating the mantra of how wrong it was. It’s about dissecting the circumstances and dynamics so that we can find a way to prevent this from happening to someone else.

So I have to ask again, what does it do to a person’s mental health to endure years of physical attacks by their beloved child, attacks that have hospitalized Kelli twice for head injuries?

Kelli’s blog chronicles their journey to secure the necessary funding for Issy’s treatment. You see, she battled insurance companies and government agencies that would not fund the full treatment. The family engaged in fundraising, letter-writing, and media pleas to get their daughter help. This does not present a picture of someone that was contemplating harming her daughter. And remember, Issy is 14-years-old. The aggression has been taking place for a very long time, as have the battles with schools and support agencies. All of this information does not paint a picture of an unloving mother, but demonstrates a desperate, yet determined, parent with great love and compassion for her child.

How did a mother of three, wife to a high school principal, former molecular biologist with a long history of community involvement and leadership, who advocated tirelessly for her daughter despite years of physical abuse and trauma, suddenly become someone that could attempt a murder/suicide?

If we don’t seek to answer that question, our community will continue to bleed.

If this woman was suffering from PTSD, depression, anxiety, or any combination of those, it would not be surprising. Not surprising and also NOT a reason to do what she did. But it does tell us that parents of special needs children (particularly those with intense needs) are in danger of compromised mental health. If we don’t start looking at a whole-family approach to supporting and treating disabilities, this danger will always be lurking in the shadows.

As it stands, disability support services don’t just vary from state-to-state, but are different from one county to another. Without a continuity in the delivery of services to individuals and families, we will forever have some that are getting excellent services, and some that get almost no services.

As I see it, those are two of the biggest flaws in service delivery today. And if we don’t ask that question, if we don’t demand a family approach and a continuity in service delivery, we will stay the present course and things aren’t likely to change.

You may not agree with me, and that’s okay. But know this: I’ve personally heard at least 20 mothers, in the past two days, say that they could “understand how someone could get so desperate, and so defeated, that they could lose their grip on sanity.”

And that should scare the hell out of you.

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

87 responses »

  1. You have a way with words. I agree with you here. We need to figure this out…and we need to fight for more support for all.

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    • This post is a perspective that is exactly how I feel about this. This Mom does not need to be put in prison, she needs help that can not be found there…God Bless!! One other thing, I am not so sure how I feel about her husband!! I do not think that he really knows what his wife as a Mother went through!

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  2. And this is the discussion that needs to take place. No arguing about anything else. This discussion need to happen or it will continue on.

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  3. So well said and I agree with you. This is a conversation we need to have. It can’t begin and end with condemning Kelli. Like any crime, we need to know what led to it and try to put safeguards in place to prevent it from happening again

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  4. I’ve personally told a dear friend that she needed immediate psychiatric intervention. That ended our friendship. Service providers need to talk openly about a whole-family approach.

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  5. It’s so easy to turn away from the horror and despair of this story as I’ve wanted to, but what you say here is so important.

    I went to some very dark places when my son was younger. I can understand how death seems like the best option in a moment of madness. It’s no measure of the depth of love for my child, it is a measure of how desperate we can become when living with chronic stress and trauma.

    I’m heartbroken for this entire family.

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  6. Flannery-I happened to see a statement by her husband on Facebook yesterday and had to google her to find out what had happened. My resulting feelings wavered from sadness to almost being physically ill over the whole situation. I’ve been a supporter of Team Issy from the beginning and up until I went back to work recently a loyal reader of Kelli’s blog.

    The system is broken. It’s so sad the wide disparity of services from state to state. If parents can’t find the support they need then where else are they to turn? Something needs to be addressed and soon so that it doesn’t have to come to this!

    Thank you for posting this. I have an unfinished post on my blog about the whole thing. I just couldn’t find the right words.

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  7. This has to be the most lucid piece of writing that I’ve seen, out of the deluge of predictable mush that’s been generated by this tragedy. We share your concerns here on the other side of the Ambassador Bridge, and we’ve had similar events take place. I’ve felt for a long time that we need to change our manner of speaking to say “family with autism” rather than “person with autism.” My son is 13 now, was diagnosed at 3, and is living in a group home where they are having some success in dealing with his aggression. My wife and I are both showing symptoms of PTSD and we’re lucky to have both individual and family counselling. The fight that we had to go through to get these services was astonishing. After getting to know a few cops due to many 911 calls, I’ve realized that we are FAR from being alone even in our region within a province of 9 million people. You’re absolutely right, Flannery, this should be scaring the you-know out of everyone.

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  8. I can understand how a mind stressed by violence, constant battling for services to meet even minimal needs and NO SUPPORT FOR THOSE PARENTS THEMSELVES during this daily assault on your entire sensorium. I myself have had thoughts of self termination caused by not my child but the agencies and governing entities established to protect and level the playing field for my son’s with schizophrenia and Asperger’s Syndrome. These entities lead you down to the mind altering fracturing and push parents over the edge. Kelli did call for help but like I always say “It is like being in a silent movie and you are screaming but someone forgot to include the subtitles”. The screams are for naught because nobody is speaking your language and thus you are stuck screaming in your mind. CMH throws the word “embrace recovery” as a weapon of service denial. If they provided the appropriate support to bolster the battle worn we could be so much more successful. Don’t judge because the story is not written in it’s entirety. God Bless the Stapleton’s and embrace that now is the time to start embracing changing how we reach out and demand to help those who have lost their way and cannot ask for the support they need anymore.

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  9. The situation is similar in Australia. Not as much the disparity between states, except for the areas of education. No state is more effective than another. There is early intervention then nothing, maybe juvenile detention for the truly aggressive, then a cavernous void of child protection involvement, foster care roller coaster and juvenile detention becomes a pathway to adult custody. The parent is long forgotten once the child becomes entrenched into this cycle. The parent’s needs are ignored prior to this descent.

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  10. I have to agree, it’s easy for anyone to call her out, but we don’t know what was going on. After being in a professional career for years to suddenly finding myself at home with someone that defies and hits. You have no life because dad did a runner, things start looking very bleak indeed. No back up from family and respite teams are no where to be seen so you are there 24/7 and there are those thoughts that come creeping in.

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  11. The lack of support for most all special needs children/adults is unnerving. Our families are under-served and that will continue. I don’t think there is a way out. Where would the time, the funds, the trained people come from? The majority of our fellow citizens probably don’t truly care. This is a mere blip on their news feed. The few who do care and take interest haven’t the power, money, energy to do what needs to be done. It would take a revolution to change this. ( Or a billionaire.) It will continue just as many sad things will. Because there is no incentive large enough to catalyze the enormous changes needed. Like poverty and hunger, this will never end. It is sad and human and true. I don’t understand how anyone could judge this mother. No parent, no person experiencing autism, no person at all has that ability.

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    • JT thank you for your comment’s. it is so true that no one should judge this mother. i have been in her shoe’s with my own son and now with my grandson. my grandson suffer’s from apraxia and is hearing impaired. yes he is 8 yr’s old and cannot talk, but he can teach me how to do thing’s on the p..c.. he is smart but ppl treat him as if he is dumb bc he cannot talk. now the sad part is no one except’s blue cross in our area for speech therapy. so we the grandparent’s cover it out of our pocket. the system fail’s so many everyday.if ppl only lived in this woman’s shoe’s for one day, i am sure they could not judge her[ ONLY IF THEY SURVIVE THE ONE DAY] IT IS ALOT OF WORK NOT TO MENTION THE HEARTACHE AND TEAR’S. i pray every night for my grandson to talk and i have to belive that he will someday. kelli had just hit rock bottom and i will pray for her and her daughter. yes we must pray for them both bc this could happen to anyone in dealing with a special need’s child.

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      • how can you possible say no judgement?!? I am a proud mother of a 14 year old boy with autism. i have been there hes been physically violent toward me, and yes hes every bit as big as me. I handle him all alone, and never had such horrible thoughts!! i will admit its difficult and there’s not nearly enough support. that’s why we as adults need to be able to step back and take a deep breathe and be better.

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        • I can say no to judgement. I don’t judge her and I wouldn’t judge you if you reached your tipping point. No one knows what your particular circumstances are, and I would guess that sometimes you wish someone did. And, as much as you might think you know her situation, you really don’t. Compassion and love is the best way to go here. I’m grateful you’ve never had those thoughts – I’m sorry that she did.

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  12. Thank you for this perspective. Just thank you.

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  13. I thank you also for your post this is exactly what needs to come from such a tragedy. How DO we prevent it along with many others. She is not the first I have read in recent days there was the boy that was also killed by his mom and caretaker when she also lost hope as they also tried to kill themselves. There has got to be a more support for parents instead of such a constant battle to get the help that is needed and deserved for both those on the spectrum, but also those that tirelessly work to help them be the best they can be.

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  14. This. THIS. This is it. Exactly. I’ve been friends with Kelli online for over a year. I found her to be nothing short of pure awesome. Something pushed her over. I have to believe that. I also agree that these people out there are trying to make this a black and white issue and it’s just NOT. There is so much grey involved. So much grey. If we want to stop this kind of tragic thing from happening again, we have to look closer at that grey. Dissect it. Interpret it. Treat it. That’s the only way we are going to reduce the occurances. Amen sister. I absolutely agree with you on this.

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  15. Mutha Lovin' Autism

    I can’t begin to tell you all of the people that have contacted me saying the very same thing. “I’ve thought about it too.”

    Excellent post. Excellent. Thank you.

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  16. I am so glad you decided to write about it. This perspective is crucial.

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  17. Hi. I am trying to avoid reading stuff. And yet I can’t avoid it. The problem with all of the information out there is it was provided by one person, and that person was not Issy. So we do not know the whole story. I do not say this lightly.

    The system doesn’t work. Let’s all just assume that we cannot depend on it. Each family has to build our own system. We HAVE to. I don’t say that lightly either.

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  18. Thank you for such in insightful and clear articulation of the heart of the matter (IMO). Ironic, isn’t it, that families are fighting so hard for all manner of supports and services for their loved ones (be they minor or adult) yet are expected to “soldier on” without their own supports.

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  19. AutismMomandCounselor

    I remember when my son was around 3-4 years old and was about the size of a 6-7 year old. He was in every treatment (OT, ST, PT, early intervention preschool, on special diets, supplements, etc.) and he would have one severe meltdown after another all day long which included biting, hair pulling, he gave my mother a black eye one day because she had to go to the restroom and he didn’t want to go inside yet (they were playing outside). It was like living in a home with ongoing domestic violence. He also had severe sleep issues that never allowed me to sleep more than 2 hours a night. I couldn’t even grocery shop unless my mom was willing to babysit him because he would scratch and kick and meltdown trying to flee the store. At one point, I honestly thought of driving off of a bridge. I would pray every day that God would either help us or just let me die. I have had friends and family members who have committed suicide and they broke my heart by doing that. I believe knowing the pain others feel when you try to kill yourself is the only reason I never tried. If it hadn’t been for my mother willing to babysit when I got to my wits end, I honestly think I would have been at risk to snap and who knows what would have happened. A support system is so critical, a true support system that will actually give you respite from the trauma inflicted by your own child so that you can stop hyperventilating for a moment and brush your hair which has clumps missing from your own child’s abuse towards you. Even the special needs school he went to could barely handle his large size and aggression. I am so thankful that with intense, almost constant prayer, tons of behavior therapy, parent training (I paid for and attended conferences all the time grasping for anything) for me on techniques to handle him, a HUGE amount of natural supplements and hyperbaric oxygen therapy, constant support from my mom, and just time for him to grow and learn to communicate, my son is now 8 years old and doing phenomenally well. I have been going to counseling once a week since he was diagnosed and it helps me so much to have a place to wail and sob and put my raw feelings I would never dare tell another living soul who isn’t a mental health professional out there. I have a Master’s degree and I am a mental health professional myself. I still barely survived the height of my child’s autism. That’s scary.

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  20. But she DID ask for help, over and over, and set up a plan that would enable her daughter to come home but because of one special ed. teacher (I am also a special ed. teacher), all the help she had asked for and secured fell away and with it, any shred of hope that her family could provide a safe place for all. It is not okay to do what she did. However, if your child is attacking you and you do not have $450 – $500 per DAY to pay for residential treatment, you risk being arrested for abandoning your child if Child Protection Services takes custody, even at your own request. And yes, I have personal experience with that here in Texas. However, after showing them all the resources I’ve tried, all the email refusals of support from providers, the assistant DA told me, “I can’t arrest you two for Refusing to Accept Parental Responsibility, you haven’t refused, you’ve run out of resources.”

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  21. I will add to your list of Moms saying that they could see how someone could become so desperate they would resort to such desperate measures. More than likely, she had access to better services since she was the spouse to a principal and was educated. Fighting for services and trying to understand a system that could fail our kids will be the most difficult thing that one could ever face. We do need to make sure that everyone in the family receives treatments. It strains a marriage, parents disagree on which path to take, siblings are forever put on the back burner for needs versus wants for the sibling that has a disability. I could go on and on, but the thing is we need to better help families. I personally have a child on the autism spectrum, but our family has been fortunate and blessed to have access to services. My husband retired from the military of 20 years. He stayed in to ensure we had insurance. I grew up without good insurance.

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  22. Thank you for such a well written post. As a father of a child who has similar behaviors to Issy I just want to say that the whole system is a joke. We spent years fighting the system for help but were denied because we have jobs and an income. The toll it takes on a family tying to meet the physical needs of raising a special needs child is unbelievable. Then there is the whole psychological impact on everyone involved. I would do anything for my daughter but we can’t do it all and we can’t do it forever. I despise the whole system and wish it would focus on getting the children the help and services they need.

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  23. I don’t have a child with autism (although I do have a child with Down syndrome), and this story has just broken my heart – and yet, I don’t feel qualified to say anything. Thanks for writing this, Flannery. You have done an excellent job of getting to the heart of the matter.

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  24. Yes. Thank you.

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  25. I have a 10 year old son who has severe autism. He is nonverbal and aggressive. His behaviors mirror those of Issy shown on the video. I feel anguish and sadness for the Stapelton family….. and understanding for Kelli. Thank you for writing this.

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  26. I struggled with a severely aggressive ASD child, battling the school, state agencies, insurance. We finally got amazing, effective help after a law was passed in my state requiring in home ABA coverage. Reading the blog after I heard the news brought so much back. Thank you–this was the post I wanted to write, a perspective that needs to be heard. Thank you.

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  27. Your article left me with a big “wow”. I have worked in human services, where I “go home” and leave whatever stressed filled situation accompanies the day to day behaviors from clients. But I could go home. it wasn’t my home. The average worker stayed less than a year. They move on. I was told, by someone who worked fighting unemployment claims, that people working in the field will always get unemployment , even if they snap . The job is considered to be under-supported and staffed. And under paid, usually. But those workers go home.

    You were looking at the cause and not an excuse. With an excuse there is the aspect that the person who who “needs an excuse” is looking for an excuse. With an excuse , there is the possibility that the person does not hold themselves responsible. People who hold the view that there are “no excuses” need to be dealt with. They are very much part of the problem. They have found the BIG excuse not to be constantly re-examining situations and trying to make things better around them. The biggest excuse that there ever was is the lack of trying to understand.

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  28. This is a tragedy snd I’m praying for the whole Stapleton family.

    HOWEVER, as of Sept. 2, 2013, Kelli had every support in the known universe available to her: 6+ months at the special autism school that worked wonders on Issy’s aggression, a Medicaid waiver, staff and volunteers already trained on Issy’s individual behavior plan and paid by the aforementioned waiver for all of Issy’s waking hours, a loving husband and family, etc — literally EVERY SINGLE RESOURCE imaginable, except the school placement of her choice (maybe or maybe not due to the spiteful actions if a single teacher — a decision that happened mere days ago that can BUT HASN’T YET BEEN appealed).

    Besides a Poweball win, I can’t imagine what other services could possibly have been provided. Kelli obtained more and better services than those that are available to 99.99% of parents of autistic kids. And that is scary as all get-out.

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    • Thank you Stan for providing the other side of the issue…..

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    • Wow Stan – I must say that your perspective demonstrates part of the problem – it obviously wasn’t enough. That is the problem there IS NOT ENOUGH. At the end of every day – all those people who provided care could not provide the one single thing that was needed. NORMAL. Until we can figure out how to help parents and families in understanding that a child will never be NORMAL. That their life will never be NORMAL and it’s ok to have help. I can imagine that the special Autism School that Kelli so much placed her hopes on, said – well here she is all done now – and still Izzy is the same. When someone places all their hopes on one thing and that one thing doesn’t work it is very many times the last straw and one sees no other options.. I see time and time again Theraputic Care release students that are not ready and will never be ready – we have no place for those students that should likely be institutionalized – because we’ve closed the institutions. In MN a few years ago – we had a significant behavior student and the Theraputic Care released him as done. His parents tried to get more and more help but the system is demeaning, cumbersome and confusing. That young person stole a car and guns and killed several people. Why do Centers in general release students that are so obviously still not well? That might be another question to ponders – typically it’s because the funding has run out. Medicaid waivers and volunteers may be at the ready – but it is almost impossible to find or keep people willing to take on this kind of challenge. On paper available services may look good but the reality is quite different. This is a population that I’m very familiar with and have been for 30 years – and the problems continue to grow. I don’t know the answers but it’s obvious that what we have for these extreme cases doesn’t work.

      I don’t condone what Kelli did – but my heart weeps for them all and all parents who struggle with an uncontrolable child.

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  29. You are right, all contributing factors need to be critically analyzed. An ounce of prevention is worth a pound of cure.

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  30. Flannery – Thank you for your logic, fairness and candor. Our prayers are with the Stapleton family.

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  31. So sad. i honestly think she must have had a moment of desperation and was only thinking of her own way out and not to harm her child. That poor Issy was there I can only imagine, she lost sight of. Yes they got help, but only because family and friends pitched in and that money ran out before her treatment was complete. SHAME on the healthcare industry and insurance companies and what little help you get from the government! This could have been prevented. The Stapletons should have been granted affordable access to a homecare therapist and personal assistant that was with the family everyday.

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  32. Im a parent of a ASD child tho my daughteris no vilent we have had plenty of stuggles. We have been failed by the school system ,mental heath, medically, and even by special needs teachers. Im a single mom ive had toquit my job to homeschool. im a 45 yr old mother who hd to move home . ive called lazy, ive been to put back in school make ber stick it out. If i did that one oc two things would hAppen her death by sucide or the next svhool shooting.Fix the system and we would gladly try agai.

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  33. Pingback: » A Mother Driven To Murder DLTF

  34. Well put. Now lets all pray for all of them…

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  35. “Quiet hands and feet?” Oy gevalt, there’s a red flag. Autistics need to stim. It’s part of our very nature. Often it’s a calming mechanism, and at times it’s an indispensable one. Is it any surprise that some of us act out when you try to suppress that?

    You stifle us, and we resist. When we resist, you brand us as dangerous and exaggerate our violence. (93 incidents per day? Seriously?) You publish this information online, along with our names, telling the entire world that we are violent menaces and severely compromising our career prospects. Then you send us to “experts” who treat us like children, using words like “quiet hands” and giving us coloring books when we’re teenagers. And when none of that “fixes” us, you just might kill us.

    And then when you do kill us, or try to, you display more sympathy for the perpetrator than for the victim. It’s as though we just aren’t as worth it, or even that we brought this violence upon ourselves. You may claim that it’s not your intent to suggest any of that, and maybe you’re telling the truth. But the inescapable effects are victim-blaming and the devaluing of our lives and voices vis-a-vis those of the people who try to kill us.

    If you want to stop the murder of autistic people, you can start by listening to us. Believe it or not, we’re real people, and some of us even talk!

    However, you are right on one thing: “it is not just remiss, but negligent, to equate Kelli Stapleton to any other run-of-the-mill person that attempts, or actually does, commit murder.” This was indeed no average murder attempt. It was a murder attempt targeted at a girl because she is autistic. Under federal law, that is a hate crime, and it needs to be prosecuted as such. Not out of vengeance, but to establish that our right to be protected against bias-driven murder is as great as that of any other group.

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    • That’s a tidy argument. People put out photographic and video evidence to substantiate the extreme behavior, and they’re wrong and shaming their child for doing so. If they don’t, and simply write their story with words and a pseudonym, then they’re making things up. There is a very real effort on the part of advocates to hide this truth from the public eye, rather than confronting it and working together to make real change. It’s a political agenda, nothing more.

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    • Are you kidding me? This woman was living a life of exhaustion and constant battle. She did not target an autistic child. She loved her child. She was her biggest advocate. She toiled mentally and physically. Where was HER support!!! She did the best she could. Due to Issy’s extreme condition, I don’t believe she was capable of explaining her needs. So maybe she didn’t want to color. Maybe next time they will give her pastels because she is an autistic “teenager”…

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    • It isn’t exaggeration. I have a child who has incidents of this number and higher both at home and at school. Self-advocates seem to believe that every single autistic person is exactly as they are and at their level of functioning. You are putting people in the very box you claim we are.

      Why is it wrong to give a teenager a coloring book if they function at the level of a four year old? I don’t know what Issy’s cognitive abilities were. I don’t know what her interests were. What would you suggest? Teen Miss? A book on quantum physics? Can’t you admit for one stinking moment at one stinking time that a parent might know her child better than you do? Even though you share a diagnosis?

      Why is it EVERY SINGLE THING a parent does is wrong to you?

      Jesus Christ. I get so fucking sick of the advocate / parent bullshit blame game. If advocates can’t concede on anything and parents can’t concede on anything we will never make any changes for our community.

      What are you bringing to the table besides hate?

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      • “What are you bringing to the table besides hate?”
        Empathy, actually. That thing we’re often said not to have. Except I hold it for the actual victim of the crime, a 14-year-old girl asphyxiated nearly to death in a premeditated act by the person most responsible for caring for her. Somehow she’s received far less sympathy than her attempted killer–something that practically never happens in a crime against non-disabled people.

        In fact, I don’t bring any particular hate to the table–or in any case, not hate directed toward Kelli Stapleton as a person. I detest her actions, and insist that they receive proper punishment. But my feelings of regard for Issy, as a fellow autistic, are far greater than any sentiments of malice toward her mother. As I mentioned in my original comment, I want Kelli fully prosecuted not as an act of revenge, but to establish the precedent that crimes against us must be taken as seriously as crimes against non-disabled people, and particuarly crimes against other protected groups under federal hate crimes law.

        “I have a child who has incidents of this number and higher both at home and at school.”
        Defined how? Defined as flapping, moving one’s feet, or grabbing your arm to get your attention? Or defined as punching, forcefully slapping, or stabbing someone with a piece of silverware? “Loud hands and feet” are often counted as acts of aggression, but they’re not. They’re just how we cope with stress, excitement, or any number of other stimuli. Usually, they harm no one. If they do unintentionally cause harm, they can usually be redirected. But I find it extraordinarily difficult to believe that any child honest-to-god assaults his or her family members, teachers, or classmates 93 times every day.

        “Why is it EVERY SINGLE THING a parent does is wrong to you?”
        It’s not. I have a mother too. I contend that she’s done most things right. I also know parents, including neurotypical parents of autistic kids, who are part of the self-advocate community. They give me hope for the next generation. When we raise misgivings about what certain parents do, it’s because we believe we have a unique and useful perspective to offer as people who share neurological tendencies with the objects of our concern. Maybe we’re not all parents, but we’ve all been parented. And we’re willing to admit “that a parent might know her child better than [we] do,” as long as said parent is willing to admit that she might not always be right. It’s a two-way street. In different circumstances, I would probably express my concerns in a gentler and more tactful way than I have here. But a heinous crime has been commited. It’s a time for outrage, and often tact is a casualty of outrage.

        “Self-advocates seem to believe that every single autistic person is exactly as they are and at their level of functioning.”
        No. Wrong. Completely and demonstrably false. I know of, and have on occasion met, very articulate self-advocates who are non-verbal and often need aides for a whole host of reasons. Amy Sequenzia, Amanda Baggs and Henry Frost are the three most prominent examples at the moment. They would be considered “low-functioning.” Our community embraces them proudly. I myself am classified as “high functioning,” but I reject such labels of functionality because they privilege my abilities and my worth above those of someone who doesn’t communicate or think or act in the same way I do. Having been on the wrong end of such privileging many times before, I won’t do it to someone else.

        Speaking of functionality labels: “Why is it wrong to give a teenager a coloring book if they function at the level of a four year old? I don’t know what Issy’s cognitive abilities were.”
        I hope you recognize the self-contradiction in this statement. With one sentence, you assert that Issy has the mind of a four year old; with the next, you admit that you have no evidence whatsoever to back up that assertion. In any event, you’re making the “mental age” argument. It’s an argument I almost always reject: an almost invariably non-disabled person telling disabled people that they have the minds of children because they don’t meet outward developmental benchmarks set almost exclusively by non-disabled people. My fiancee is 27 years old and a successful high school teacher, but she regularly cuddles stuffed animals. Does this make her mentally a child in some way? Moreover, even Issy’s mother bragged on her blog that Issy was an intelligent girl. Probably not something one would say about a person with a mind ten years behind her body. And might being treated like a child have some effect on whether a person continues to act in a way that seems childlike?

        Reply
        • Nope. Nuh-uh. I never, ever said you or any other autistic person lacks empathy. I know that is uncategorically incorrect. You have never heard that from me. I have two boys on the spectrum, both are empathetic and capable of incredible levels of love. Go flick that booger on someone else.

          My son’s “loud hands and feet” are not the issue. His throwing desks, chairs, attempting to bite and gauge the staff are. I give zero shits about loud hands. Again. That is not me. Don’t put that on me.

          I’ll have to check out the three advocates you listed. I don’t know them; haven’t heard of them. So, I’m going to find them and learn from them, hopefully.

          “Speaking of functionality labels: “Why is it wrong to give a teenager a coloring book if they function at the level of a four year old? I don’t know what Issy’s cognitive abilities were.”…There is misunderstanding here. Not sure if my writing was unclear or if it is just a general misunderstanding. There is a major difference, in some people, between chrono age and dev age. This is true. Maybe not for your stuffed animal cuddling fiance, but for others. Others have a cognitive level much lower than their age. At that point, if that is the case, then, a coloring book for a teen who has a dev age of a 4-5 year old would be totally appropriate. Not a copy of “Twilight.” I simply stated that I don’t know if that was appropriate for Issy or not, but that if her dev age was younger, than, it *might* be appropriate. That’s it.

          Thanks for the tip about the other advocates.

          Reply
  36. I’m the parent of a 9 year old non-verbal autistic son and a 13 year old Aspergers son. Yes, especially when they were little and I was desperate, I had dark thoughts. But, the difference between me and every other parent with those thoughts writing here is that we didn’t act on them. The big question is why not us and why this parent?

    Yes, the system is generally broken but services also vary widely from state to state and even within states. If it’s the system that needs fixing, what are we going to do about it? In Oregon, we just passed insurance legislation, although with a delayed implementation date of 2016. There is also an ongoing class action lawsuit and administrative process for medicaid coverage. All of this is the result of tireless efforts of one father with two young children on spectrum, a full-time job out of state and a remarkable wife. I’m not saying that each parent complaining about the system has to be that amazing dad but find that person or group and support their efforts. In Oregon, it’s the Autism Society of Oregon working with Autism Votes (part of Autism Speaks) and other local groups.

    For all the sympathy that I hear for the mom here, I’m shocked by the lack of sympathy for the child. 93 instances of aggressive behavior a day is not just evidence of what the parents are dealing with. For non-verbal people, behavior is communication. What was pushing this child day after day and year after year to act so aggressively? My guess would start with immense frustration. Where is the sympathy for what the child has been struggling to express for years? If anyone has shown that concern, I have yet to read it. Also, in the blog, the mother talks about the behavior plan needing to undo 14 years of their parenting. I think thats an interesting admission. Last thing, about the blog: why is it OK for the mother to invade her daughter’s privacy like that? Would you want this info and video posted to the world at large if you were 14?

    The system sucks, yes, and we need to work to fix it, but I dont think thats the while answer here.

    Reply
  37. thank you for posting this. thank you

    Reply
  38. I can understand where she was, unfortunately. While my spectrum child is not my hard child (she’s high functioning and doesn’t have any violent behaviors), I have three that I adopted who have Fetal Alcohol Spectrum Disorders and two of them have Reactive Attachment Disorder. I’ve been emotionally abused for years by the two with RAD and physically beaten up by all three of them at one point or another – as have the other kids in our home. Now that the oldest of the three is out on her own and the youngest is in residential treatment, I and the other kids can finally begin to heal. We all have PTSD to one extent or the other. Couple that with the isolation, loss of friends and family contact, loss of self-esteem from being told by both of the RAD kids (and some professionals we’ve dealt with) that all their problems are my fault, on a daily basis, and you end up an emotionally battered mass of mental and physical bruises. As awful as it is to admit, I’ve had thoughts of taking my own life and occasional thoughts of wanting it all to end – period. So, yeah, I can understand where she was.

    Reply
  39. Jennifer Greening

    Many days it has taken all my strength, intellect, and patience getting the supports and services that my daughter with autism deserves to have in school. She is 15 years old and just yesterday I was in tears after hearing “no” from school personnel over an issue that made no sense to me.
    School personnel should not have the authority to make parents feel so helpless and desparate. The “rules” that get conveyed can make families feel marginalized. We need stronger legislation to make schools inclusive so parents have the right to send their children with special needs to their neighborhood schools (with the supports and sevice they need)–without the threat of the child being “removed” at any moment. Removed where? To “someplace else” that will deal with them. Go look at those places and see if that is someplace you would want to spend your days…
    I hope there are severe consequences for the school personnel that resulted in this mother feeling so alone and desparate. They have an ethical and moral responsiblity to children and their families. Yet, parents of children with special needs are often being treated without respect and there are not consequences for personnels’ poor, uncaring attitudes toward parents of these delicate and special children.
    Sending my children with typical needs to school seems almost effortless compared to the number of meetings I attend for my daughter with special needs. Schools take the families with the greatest needs, responsiblities, and worries and make them fight for what their children with special needs require to have a great, inclusive life.
    I think the obvious response is to judge the mother and to feel horrified about what she did. However, the school personnel clearly did not try to ease this mother’s burden and try to honor her wishes for her daughter.
    Parents are dealing with serious concerns and medical conditions. Schools need to be careful and gentle with parents and offer families support.

    Reply
    • kim curtis-putney

      As I understand…the school followed the rules according to the IEP guidelines. The agression was not just directed at her mom and there were 23 other students in the class. I agree there should have been other alternatives offered. Perhaps there were…I was not present. In hindsight and looking back through Kelli’s posts…we were all to blame. Her comments were very desparate indeed. I will shoulder some of the responsibilty. I should have paid better attention. I saw her in July and even then there were signs….I cant undo whats been done…but I can fight her fight and make sure this does not happen to anyone else.

      Reply
  40. I agree. There needs to be a multidisciplinary and family approach to treatment. I just wish there was something I could do to help. Neither one of them got the help they needed and I am a mother that could also understand what brings you to the ledge. Continuing to pray!

    Reply
  41. Thank you so much for being a voice of reason. Do I condone this action-no way. Do I understand it-unfortunately yes. I have a child with some disabilities that I have agonized over at times. However, I had some great support. One of those persons was Matt Stapleton, the principle of the high school my son attended. It’s only been in this last year that I have realized why Matt had such compassion for my son’s situation. My son was no where near as disabled as Issy, but he did have issues that affected his school career. I’m happy to say because of Matt Stapleton and Kerry Nugent (the special ed teacher for my son’s last two years) he is in college and doing very well. For that I will be forever grateful.
    This situation is so much more complicated than anyone can fathom. Just a few says earlier there is such an optimistic post about Issy’s return home. To go from such a high place to such a low place in those few days shows what a roller coaster this family has been on. None of us can judge without walking in their shoes. However, you are so right about needing to dissect and understand the issues. We need to make changes to support these families so that this never happens again. Can you imagine how this adds to the stress of an already horrible situation for this family?
    It’s voices like yours that hopefully will urge action. The best thing that could happen from this tragic event is that eyes are opened and changes are made to make things easier for future “autistic families”.

    Reply
  42. I think you have a very good grasp of the situation. Each point you make is 100% true. We need to understand how she got to the point where she did what she did. Not to justify it, not to condone it,not to forgive it. For I believe we “all” agree there is “never” a excuse to harm your child or any child for that matter no matter how your day went, your year went or how you life went. But, to understand the journey to that point so that we recognoze when intervention “has” to be initiated. Only by studying the History of a event can we have a hope preventing it from happening in the future.

    Reply
  43. Well written blog post. I cannot take the time right now to read all the comments so excuse me if this has already been shared. I see one of the biggest issues with families getting support is fear. CPS so often abuses families trust that parents fear asking for help. They fear being reported, their child being reported, they fear CPS removing the child and forcing them into psychiatric hospitals, into foster care, where in all likelihood things will be even worse for their child., I have heard these concerns share with me time and time again. And sadly these families are right to distrust a system like Child and Family services.

    I have been blessed to not have to deal with anything as intense as this family had to. I have been able to build trhe support and get the help I needed. I fear that many others cannot and will not. So thank you for saying this and sharing the awareness that a safe and supportive system is needed to help these families.

    Reply
  44. This is the most gut wretching commentary I have ever seen. Thank you for putting in to words what so many families experience. I weep for the family and all families who have to endure this lack of support. Thank you for putting into words what so many have felt.

    Reply
  45. She snapped. Understandably too. I would have. The insistence of integration into the community is exaggerated and the parents ultimately pay the price. I have 100% sympathy for this mother and her very disturbed daughter.

    Reply
  46. Unless you have stood at the edge of the black hole of helplessness & hopelessness, I don’t believe you can truly even begin to fathom how something this tragic can transpire. We can speculate and debate the how’s and what if’s forever and most likely will never have the answer to why – other than this mother “broke”…she is broken…and right now I would ask any of you that believe in the power of prayer to put aside any negative energy and pray for Izzy, her mother and this entire family.

    Reply
  47. If there is one rule I try to abide by it is not to judge someone else. One can not say without utmost certainty what we would do under the circumstances. What I can’t seem to shake from this situation, is the effect it is going to have on the other two children. Being the loving, caring mother that it sounds like she is (I don’t personally know Kelli) I can only imagine the pain and turmoil she must have endured in choosing to do what she did. Anyone who is a mother of more than one child knows that you love each child equally and how could you not feel torn over loving one child if that meant failing to protect another? Not that I agree to her actions, I don’t think that is the issue here. The bottom line is a family has been torn apart and anything that is to come now is going to require the public to have an open mind, and most importantly an open heart. I pray for the family, the whole family because there is a lot of healing ahead of all of them.

    Reply
  48. Thank you for opening up this discussion. We have a similar situation and our son is now an adult with even less services available. From the responses there are many many suffering similarly in virtual silence. A couple of things I’ve noticed over the years:
    – if you seem to be a well educated articulate individual or parents the service providers leave you alone more frequently because they assume you’ll be able to figure it out. It’s how they justify allocation of meagre resources.
    – The more severe the behaviors the less resources are available, e.g. we could never get respite services because none of the respite facilities were capable of dealing with that level of aggression. Again, it comes down to allocation of meagre resources, i.e with x dollars you can either provide support for 100 moderately affected or 10 severely affected, politically it looks better to be supporting 100.
    I’m not condemning the majority of those trying to provide support, but pointing out that from a political point of view those in this position are not considered truly worth supporting. Despite what federal, state, provincial or municipal legislators tell us they do not want to fund fully the resources required to prevent these things from happening in the future. As the population of the severely autistic grows and grows older this will become a much more common occurrence. Please forward this discussion to as many politicians in you area as you can.

    Reply
  49. This is not made up. I have a brother who as a child was aggressive. He would throw anything that was in front of him, including knives. He pulled hair and was quite strong, even for a child. At that time Michigan had institutions (as a last resort). He ended up at Mt. Pleasant Center when nothing else worked. Luckily, the Center helped him with his aggression, and now as a 48 year old adult he has virtually none. Now the state has closed the institutions because they felt they weren’t needed. Even though Issy’s parents wanted Issy to stay with them, they may have had to reach the conclusion that she could not, if the institution would have still been an option. The postings that Kelli made were NOT made up, I am sure of that. She described vividly what I can remember seeing and experiencing when I was growing up with my brother. It is real. No, I don’t condone what her mother did, but I certainly understand it. More definitely needs to be done in terms of comprehensive treatment for cases like this so that this doesn’t happen again.

    Reply
  50. Pingback: No Right, No Wrong - Only Tragedy -

  51. The apologetic tone of this post is in no way warranted. I was not thinking what you accuse me of thinking. I was thinking that we are a bunch of fully grown kids if we’re walking around saying that children, up to an Age physically approaching adulthood, should have the right to brutally attack adults and children….children ONLY…..are worthy of our sympathy. This case is one thing…autism was involved….but where I live a 14 year old bashed a woman’s head in with a hammer because he didn’t feel like anyone was listening to him. He’d told many therapists and CAS workers about his violent thoughts unrelated to his upbringing. They blamed his parents for everything and said he could do no wrong. Here is a kid who literally MURDERED someone for the privilege of being held responsible for his own actions. Healthcare professionals need to ask how we can all work together. Stop acting like their relationship with parents is adversarial and yes, admit that at least some of their anger comes from guilt, because they are partly to blame. An we live in a very oppressive society right now where the group “parents” are considered non-persons under child protection legislation. So yes, murder and suicides have been the inevitable result. You face prison for choosing not to parent children, face losing them to state reposession, yes, they make parenting adversarial, and for some, it becomes a hateful process, bringing up a little lord Fauntleroy who cannot be disciplined except by the state. But no-one wants to say it, everyone apologizes for thinking of it, and nothing changes for families who are held daily under the microscope because the state throws around extreme examples like this one, rather than taking blame for the fact that they do this, daily, to EVERY family of an autistic child, and that almost NONE of them do this. The story here isn’t the one murder suicide that did happen, but the thousands that do not.

    Reply
  52. I don’t agree with you on one thing. That having a mental health disorder could cause a person to harm a child. I have 2 degrees but I also have OCD. Maybe it’s discrimination against people with mental health issues that needs to stop!!!!

    Reply
  53. “former molecular biologist ” is over-stating. Kelli has a BA in biology and worked in a lab before she was married. I don’t understand the timing–Issy had just gotten out of the residential program. I wonder if there was more going on with both Kelli and her daughter than her blog posts said.

    Reply
  54. Very nice article ~ thank you

    Reply
  55. It is sad that so many people focus on what happened, instead of the bigger “WHY”. It is easy to sit in your safe world and view life with your experiences, beliefs and support system at the front of your mind. But we forget that people are not all the same. we all have different strengths, weaknesses, experiences, and our breaking points are all different. It is easy to point a finger and say “I would never” and I am sure that is true. Put two people in the exact same situation and you will get completely different results. The system needs to adapt to the people it is designed to help. Until we can treat the people as well as the situation, the system will continue to have devastating failures.

    Reply
  56. I totally understand there not excuse what happen its really hard a child that you love so much hurts you or one of your family members daily …

    Reply
  57. It failed her. It fails so many of us.

    I cannot condone or even imagine being in the black hole of hopelessness and desperation she must have been in…but this opened my eyes to what the family was going through:
    http://m.youtube.com/watch?feature=youtube_gdata_player&v=55Fyu9LFxog&desktop_uri=%2Fwatch%3Fv%3D55Fyu9LFxog%26feature%3Dyoutube_gdata_player

    Reply
  58. The people who are ‘shocked’ are probably the same people who no longer to speak to their friends with children with autism BECAUSE their friend has a child with autism. I know what it’s like to be invited to family events and DISINVITED when people find out your child will be coming with you. I know what it’s like to have friends no longer talk to you because your child has autism. I know what it’s like to find out about family reunions, dinners, etc. AFTER they’ve been held because no one wanted you to know about it because you may bring your kid. It’s more interesting to me that people who call themselves friends and family want to pretend to be “shocked” that the parents feel isolated, when it’s the friends and family who make a point of isolating them and telling them to not come around them anymore.

    Reply
    • And my child isn’t even angry and violent and actually likes being around other people, and is much smarter than other kids his same age (taught himself to read at 2. Taught himself math, shapes, colors, and has been trying to teach himself to play the piano but is too impatient and gets angry that he can’t play what he hears.) Meanwhile, relatives who have been in and out of prison for years are welcome with open arms.

      Reply
  59. Whatever really happened in the Stapleton home is unclear … heartbreaking no matter what the cause or verdict.

    All we can do now is try to learn from it. And the points you raise here – especially your last paragraph – are spot on.

    This life ain’t easy…but it’s all we got. Sympathy for Kelli doesn’t frighten me nearly as much as empathy.

    Thank you for this thoughtful post.

    Reply
  60. I so feel for Kelli. She was at the end of her rope, after years of trying. Trying to make it better. The insurance companies (some more than others) have set up solid brick walls against parents of autistic children. It’s far better to give these kids the treatment they need while young so that they can become better equipped adults. It benefits all of society to help these children. They deserve the help and respect, and they deserve the treatment needed to get there. They don’t deserve the judgmental hate stares they get when in public having a tantrum or a sensory meltdown. If people tried to help and be understanding, more than they stare and judge a family with an autistic child, maybe more would get done to help these kids. My son is 4, and he has been physically beating me since he was 13 months old. The hitting and physical aggression didn’t hurt so much in the beginning, but now that he’s bigger, it’s become very concerning. We can’t get coverage for ABA. His behaviors are the one thing that stands in his way of progress. Society can judge autism parents, that’s easy to do. The real challenge is actually trying to be proactive and step outside your comfort zone to help, which would make a huge difference in our society in the next 20 years as these children grow up and join society. Until you’ve walked in the shoes of an autism family, don’t judge, and please watch your stares if you’re not going to try to help somehow. These children are everyone’s future.

    Reply
  61. This is an excellent article. I hope you will allow me to use it as well as have it run in our newspaper if I can get it done. As a grandmother of an autistic as well as multiple handicappeden year old and a cousin of. Kelli I can truly empathise. We think the world of Kelli and know that she has been under years of stress and she does have PTSD. Thank you for your heartfelt truth. God help the world’s i of the autistic and their caregivers.

    Reply
  62. I’m one of the mothers who can see how this could happen. And yes, you’re right, it should scare the hell out of all of us.

    http://familythreebecca.wordpress.com/2013/09/10/kelli-stapleton/

    Reply
  63. I have been captivated by this story. Not only because of the complete desperation in Kelli’s last post, but also because my niece has just been told that her 2 year old is “on the spectrum”. She has a 7 year old, 5 year old, 3 year old & 1 year old also (the last three were born within 25 months of each other…) so to say she has her hands full already is an understatement. I have recently seen her sadness and frustration get worse and her not knowing what to do for A when he has numerous meltdowns a day, hurts his baby sister and older brother consistently (calculatingly and purposely as well) adds to that frustration and fear. The 1 year old is now his size (she is a big 1 year old but he is also a very small 2 year old), verbal (unlike A) and she is starting to mimic his behaviors which is also worrisome – she thinks the way to play is to hit and throw things….I wish that we here in Michigan had better resources for families.

    His 7 & 5 year old siblings do not know how to cope with a violent 2 year old that can not verbalize his frustration, they know they can not hit back, and so they just stay away from him, ignore him and try to keep him out of sight while they are playing. The 3 year old is starting to play with them more and also starting to ignore him….so yes – not only do the children “on the spectrum” need support and help, but the families need it – every single family member no matter how old or how young….it just scares the hell out of me…like you said….

    Reply
  64. This is what we need to focus on. How we can prevent it from ever happening again.

    Reply
  65. to whom every wrote this i am at the beginning of dealing with a child who the doctors say may possibly have aspergers but they will not diagonis it but if you have any suggestions to help other then the court system because she is already being charged with 3 domestic violence charges against me i would really appreciate it we have had cmh involved for 2 yrs and nothing seems to be working

    Reply
    • My main suggestion would be working with doctors. I don’t know if you’ve tried medication, but that is something to explore. Also, therapy for the whole family. I hope you have good supports and can find some answers.

      Reply
  66. Pingback: Where Was Ari Ne’eman? | Living on the Spectrum: The Connor Chronicles

  67. Pingback: The Hidden Autism Community Follow-Up | Living on the Spectrum: The Connor Chronicles

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