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Kelli Stapleton. Still Relevant.

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“It seems to me that currently, to get a child who has extreme behaviors help, you almost need special treatment. You have to get the attention of important people. I hope that changes. I hope there becomes a streamlined process for families who have suffered at this level (yes, living for years in a life threatening situation is enough suffering) so that the attitude is helpful and sincere.

Please say words like this to those families:

How can I help you Mrs. Stapleton?

I don’t know how you have done this for so long!

Here is our plan for your child. What do you think?

Here is a program for you and the siblings, run by excellent professionals who have experience with what you have gone through.

Please call us with any concerns. We want to help you. We want to improve our services for other families. So really, any concerns you have, just call, email or text me.” (from The Status Woe)

The tragedy regarding Kelli Stapleton and her daughter belongs in every conversation about autistic supports and family supports. It belongs in every conversation about “advocacy” because advocacy is supposed to be about getting people the supports they need to be able to live and thrive in the least restrictive environment.

Kelli’s actions were not an act of love. They were an act of desperation, despair, and hopelessness. It’s important to know about the road she travelled to get to the place where she could attempt to harm herself and her daughter.

We need to examine what happened, to scrutinize the ill-fated journey she took to get to that place. It is uncomfortable. It is painful. And it is entirely necessary to talk about that heartbreaking topic.

The how and why are very important.

While the easiest answer is that there aren’t enough services and supports for families, it is also the most truthful and relevant answer. Although Issy had just returned home from an extended inpatient program (that took many months of haggling with insurance companies and a good deal of community fundraising efforts), the comprehensive supports for her during waking hours were still in the process of being trained, but not yet providing services.

But we can also look elsewhere for answers.

“So less than a week before school is to start, she is uninvited.

I am devastated.

My husband is gutted.

So I’ll move to Kalamazoo, three hours away from home, my husband, and my other two children to do what is necessary to meet Issy’s needs. I wish though, the school could have tried.”

If you read Kelli’s blog, you will see a mother that is pleading to every corner of the universe to help her daughter, help her family, who were struggling under the weight of living with chronic aggression. She tried to gain as much attention as possible, even media attention, to combat insurance companies that deny services and funding, as well as shedding light on the families that are left to fend for themselves under dire circumstances.

“When our insurance company saw the data, and the behavior spike, they determined that the behavior treatment wasn’t working anymore and that they were pulling funding.”

Was Kelli a parent prone to betraying her daughter’s trust by writing about and recording her challenges? Not really. The blog began in September, 2012, a year prior to the awful event in which Kelli attempted to end both their lives. Here’s how the blog started:

“I have to make this child ready for the world. But also, I have to make sure she is SAFE when I’m gone and living on the other side in the pearly gated community. She needs to be safe from abuse, exploitation, neglect, theft, and so on. Remind me to tell you about a worker we had that faked a pregnancy and then accused my daughter of causing her miscarriage. My little girl was 11 at the time. *sigh*”

“I need a big audience because it will be hard to deny a little girl treatment if the world is watching.”

Did Issy’s parents devalue her? More specifically, did Kelli devalue her, as has been asserted by fringe groups calling themselves advocates?

“Issy’s smart. She can learn ANYTHING! She’s only 13…. so if we started working on skills now, well heck, she would be able to do millions of things!”

“I miss my baby so much. She spends her days and nights with people who are working with her, but they don’t love her. All children should see someone they love EVERYDAY. We see her once or twice a week….we all miss her.”

All evidence points to Kelli to everything she could possibly think of to find help for her daughter and family. Was she a perfect parent? I doubt there’s one of those anywhere. Was she doing things and taking steps to help her daughter and the rest of her family? It would seem so. Yet despite all the hard work and the inpatient treatment that Issy received, in addition to a comprehensive behavioral plan and staff that were being trained specifically to implement her plan, Kelli was now forced to move three hours away from home with Issy, with NO supports in place, because her schooling was pulled out from under them.

I worry about what people with a political agenda are saying about this family and their ordeal. I worry a lot, because there are more families out there just like Kelli’s. Families that live with aggression on a daily basis, and don’t have the full family supports they need.

And so I stand with Kelli’s family. And I stand with Issy and other autistics with intense needs and challenges. The system didn’t just fail Issy, it failed the family unit because autism doesn’t exist in a vacuum. I stand with families that are crying out for help, and they’re not only NOT getting it, but they’re being torn apart for the way they’re asking for it.

It’s not just my moral obligation, it’s our moral obligation to leave judgment, punishment and accountability to courts, while we direct our time and attention to having meaningful dialogues about ensuring that families never get to that level of desperation again. It’s imperative that advocacy not only demands respect and value for autistic persons, but also safety and support for their entire family.

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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.

23 responses »

  1. You could have left the first 3/4 of the blog out and you’d still be spot on with, “It’s not just my moral obligation, it’s our moral obligation to leave judgment, punishment and accountability to courts, while we direct our time and attention to having meaning dialogues about ensuring that families never get to that level of desperation again. It’s imperative that advocacy not only demands respect and value for autistic persons, but also safety and support for their entire family.”

    And I get that Kelli gets your attention. Her situation immediately pulls people in on both sides, ready to fight to the death. Which is what something like this SORTA needs. Because without truly tragic awful horrific attention arresting situations…WE DO NOTHING.

    Reply
  2. You bring up such good points here, Flannery. I wish I had some answers. I really, really do, because ugh, this is such a tragedy for Kelli and her entire family.

    Reply
  3. Barbara Vogelsang

    What an honest and open article. I saw this as a desperate act; nowhere to turn, no one to help this mother and her child. Kelli obviously loves Issy and felt she had no more avenues to travel. What a lonely, heartbreaking decision. So tragic.

    Reply
  4. Thank you for this. So well said. I love Kelli and her family so much! I can’t tell you how heartbreaking it is to see her shuffle across a court room with her hands and feet in chains. It makes me want to SCREAM! This nightmare is far from over.

    Reply
  5. This right here is why Kelly matters. Really not because of the spotlight on Izzy but for the spotlight on how having a child with special needs impacts the family. The entire family needs support, understanding and for Pete’s sake medical care that will be there when you need it.

    Not after all hope has been expired.

    Reply
  6. I’m glad you wrote this. I remember last spring, when Kelli was raising funds for Issy’s treatment – I donated and tried to help spread the word. Kelli was so grateful and so sweet about each person who was involved. It broke my heart hearing what depths of despair she’d reached and you’re so right. It’s not over. There are so many families who still need so much help. Insurance companies and society in general need to step up. For us, our insurance company gave us speech therapy rather than the more inclusive program that was recommended for our son. It’s just wrong. Thanks for writing this.

    Reply
  7. Why did Stobie, with a Special Ed background, wait so long to pull the plug on Izzy attending school?

    What do FEAS and BCS receive from 3.5-million in tax money for the TBAISD? Enough to cover Izzy’s needs, subs, and patronage.

    Doesn’t Izzy prove that the FEAS isn’t a viable entity, when looking at the final cost of trying to stay relevant or feasible as school district.

    Look like Kelly got set-up within a perfect storm, by the schools, and others.

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

  9. My name is Vicky and I am an autistic woman who is mother and grand mother to both NT and autistic children and grand children. They are all beyond awesome.

    I have been reading this blog and find it more than a little disturbing. These activists that you so demonize are autistic, as are your children. These activists care about your children. A lot. Really.

    I have organized a mini autistic retreat in February. Kassianne Sibley has been invited to participate.I still have not received a confirmation, as she may have a conflict with her school schedule. I am excited about ALL who might attend, but none more than this remarkable young woman. Why? Because I want the best for my kids, my grand kids, and all the autistic community. So does Kassianne.

    One thing we will be working on at the retreat is establishing an intentional autistic community within an already existing community in Thornton Colorado. We will start extremely small by purchasing a large home where there will be room and board provided for more “high functioning” autistics working together inter-dependently.

    I have already spoken with several families who have more severely affected autistic children who are wanting to move across the street from our community seedling. Why? Because we will be encouraging the growth of a community with autistic people who want to help other autistic people.

    We WANT to be there for the children [and their families] baking them cookies, helping with errands for their families, getting to know, help with, and even mentoring the children.[Have you ever seen a picture of Kassianne with severely affected autistic children? I have. And that's why I am so excited about the possibility of Kassianne attending. Love FLOWS from Kassianne. to autistic children. For my kids. For my grand kids. For YOUR kids,]

    We want your kids to be able to live and thrive in a community where they are accepted and are able to be ausomely succesful autistics. We want your kids to live in a community where their parents are not always stressed and worrying about what will happen to their children when they [the parents] die or are unable to take care of them any longer, because they KNOW there is a community [ we;re talking a number of years of growth in the community]who WILL be there for your kids.

    i want that for my kids. I want that for your kids. So do all of the hard core autistic activists that I have had the privalege to get to know. Really..

    Reply
  10. I’m sorry. I was so busy with AutHaven that I have not checked here. Our actual home residents will be what are considered high functioning autistics. People who can help with their strengths and be helped by others on the spectrum. We are also looking for people who feel a responsibility to ALL of the Autistic community. We already have 2 families[ long term plan is HUGE] with what is considered low functioning autism, It is a top priority that we support each other. Everyone in the initial home that we purchase will be helping as new families move into the neighborhood. I plan on helping families with Autistic children with housework, casseroles,cookies,mentoring, respite care, whatever.One of my goals is that neighbors in our community [and I realize the realization of the big dream is long after I'm gone] will not have to live in fear of how their child will be taken care of when they die because there will be loving supportive community.

    By the way, AutHaven was awesome. I would love to tell you more about it, or more about the intentional community being planned. The chemo I am on does make my mind a bit jelloey though,, so please do not be cruel about my numerous grammatical errors.

    Reply
  11. [part 2 of my response]

    If it’s alright, I would like to share a little about myself. online it becomes so easy to forget that we are all eal people with real feelings. This is my real name [ I noticed comments about not being afraid to use real names on this blog] I also regularly post on Wrong Planet. I also use my real name there, so if you would like to check out what I post about, I’m Vicki Gleitz there as well. I am stepping out in trust [yep, I'm a stereotypical, often too-trusting autistic]that I hope you do not abuse because WP is such a source of comfort to me.

    Just one thing before I go on. KS DID attend AutHaven, and she was incredible.

    Okay, back to my [easily verified] story. I am an old woman, nearly 60. I grew up in a beyond horrific household. In an extremely dysfunctional and violent family there is ussually a scapegoat. A spazzy little girl who cannot speak out about the abuse is the best candidate. I’m only telling you this part so that i can explain how I KNOW that PTSD can be so easily triggered, and that when it is triggered a person is right THERE, smelling the evil smells emanating from , feeling the beatings, hearing the gruntings and the threats. I mean it is happening again, RIGHT THEN, and it is awful.

    Now, REALLY back to my story. I am Autistic. I never realized why I was so different and incapable of so many things until after youngest sons birth. I have 5 kids[ranging in age from 20to 40], 6 grandkids [possibly my first great grand child on the way]some HFA, some NT, ALL beyond awesome.

    Youngest son was definitely the most “creatively wired.” I was aware of this, literally, the day he was born. He did speak and walk according to the schedules in the baby books, but he seemed to never stop crying and he rarely slept.

    Kids were always terribly cruel to him, so we moved to a small town hoping he would be more accepted. Um, no, but then he did finally make a couple of HFA friends. They both moved out of town at about the same time. He came home with bruises every day until I started homeschooling him.

    rRight after he turned 12 he developed profound Tourettes. They were not simple litttle tics by any means. Because of the extremeness of his tics and the quick and older age onset, he was given all sorts of tests. Before those were completed he started screaming in agony and passing out. [central pain disorder, there are some lesions on both sides of his thalamus] they are ice-pic, similar to taser like pain. He calls them” the burns’ and for much of his life he has passed out hundreds of times a DAY from the pain.

    He has also begged me, thousands of times, to help him die. He has told me that if I love him that I would. It has not been easy for him.

    From the onset of his illness we had been told that there was little that could be done to alleviate his pain. So, we tried everything. Some of it really weird stuff, a half a million dollars of weird stuff.[ we now live in a camper trailer in the mountains. we rented the lodge and the clubhouse where we live for the retreat. we still own our home but we cannot afford to live there.: the sales ofThat house, though, will be the start of our intentional community]

    LJ is not cured, but he is doing much better,not enough to attend school or work,not enough to stop wanting to be dead, but better.

    I have always worried about what will happen to my son after I die,but when I was diagnosed with breast cancer, well, I started worrying about it even more.

    i won’t go into what happened next, not now, but last September I decided that I have to start the community, also the retreat.

    Anyway. all of this emnity is so sad. We really all need to work together for our kids. I mean seriously.

    I’m still not sure if I have answered your question clearly. We intend to buy one home. HFA’s will live there. There are also 2 families with seriously disabled children who already would like to move into the same neighborhood. And I believe it will grow, Yeah, it’l take years. I’m hoping it will be duplicated [ already people in 4 other parts of the country are putting together their own AutHaven type event]

    Anyway, I’m super tired. these divisions have to stop, for our kids.

    Reply
    • I’m so very sorry for all the pain and challenges you and your child have endured. It sounds like you’re doing something positive for their future, and I wish you all the best in that endeavor.

      As for the division in the community, I agree that it must end. Advocates must stop bashing parents and blaming them for their own past abuses. It’s driven many people away from advocacy. KS has insulted more people than I can count, including accusing me of “throwing myself out of the closet” for mentioning that I’m on the spectrum. She is not stable, kind, or a real advocate in any sense of the word. I would never allow her near my child. I hope she gets the help she needs.

      Reply
  12. Please please please stop with the demonization of KS and other activists.The KS that I met a couple of weeks ago is sweet and kind and patient. Her calling in life is to advocate for kids. She was my youngest sons’ favorite adult at AutHaven. She helped him so much with his low self-esteem, and even before I met her, I had a strong feeling that she would.

    Your son, Connor, is cuter than cute and he is obviously ‘uber” loved by you [especially you] and by others. And the other moms here? For sure and for certain they cherish their kids as well.

    KS cares about your children as well. Really. So do I. A lot. I doubt as much as KS does. We should be working together. We NEED to be working together. As a sister Autist, your innate combination of empathy and logic knows this.

    Reply
    • Please don’t use inflammatory language. I did not “demonize” anyone, I merely gave you a factual example of something that occurred. Is your experience of her more valid than mine? I did not doubt your account of your encounter, nor did I try and silence you. There are many of us that want the community to work together, but we’ve been unable to get the knife out of our backs so that we can try and do that. I’m glad you had a positive experience, and I hope it continues to be positive. As for me, I’ve had multiple hateful encounters, have been called many, many names, and have had my neurology questioned. If you are trying to tell me to “get over it”, then I would encourage you to carry that same message back to others.

      Reply
      • I am sorry for the inflammatory language. And I do not tell people “get over it.” I think many people,particularly the most passionate, can have their passion taken wrong. Though I am passionate, I am not that way. In some ways I wish I were. My meltdowns that are triggered by frustration at lack of progress, send me curled up in a little ball on my bed crying and feeling hopeless. It’s pretty pathetic actually.

        So, you seem to not be fond of KS. Okay.

        I adore her and believe that she is going to make huge positive changes in how our kids are treated by society in many different ways. Okay.

        So, putting our differing opinions of KS aside, how are we going to work together so that when our kids are 93 years old, and, after gently passing from old age in their sleep one night, are met by Saint Peter at the pearly gates. And when Peter asks, “So, life on earth, how’d it go?” they can answer “Boy howdy, that was one great time!”

        That’s what I want for every autistic kid.

        Reply
        • As I mention in the post, I think families need more support to keep from going under, especially when supporting a child with behavior challenges and aggression. We need to be advocating for legislation that guarantees family support.

          Reply
  13. I live near Denver. If you know a family in the Denver area, I would be honored to help. The only documentation I could provide as evidence that I am not a “weirdo” is that I was a licensed day-care provider for many years and could provide references. I could help with time,but not money {I have none] And we do need to be advocating for changes in legislation,but, it really does take a village to raise a child, and villagers are flesh and blood human beings.

    I [and you as well] am one of the relatively few autistics who has been blessed with children of my own. I am a mother. As a mother, there is no one who could understand my kids [both autistic and NT] like I do.

    As I mentioned in another post, we spent over $500,000 trying to find something to alieve youngest sons excruciating neurological pain. I did not make that sacrifice because I am autistic. I did it [and I am so glad I did] because I am a mom.

    No one can understand my kids because I am their mother, And there are also a number of ways that I understand my autistic kids ONLY because I am also autistic. Conversely, I am beyond mystified by my non autistic kids, and as much as I love them, there are some ways that I will never understand their NT thinking. Does that make sense to you?

    Also, I love your name and was wondering if you were named after my favorite of all time author.

    Reply
  14. Kelli Stapleton has been portrayed as a Monster, I Truly Understand What She Was Going Through, It Is Extremely Difficult To Be A Caregiver Of An Autistic Child, I Know It First Hand, I Have A Severely Autistic Daughter Who Is 24 Years Old, It Is Not Just The Physical Part, IT IS THE EMOTIONAL SIDE OF IT!!!! SO To All The Critics Out There Who Do Not Know What It Is To Parent A Special Needs Child, SHUT THE FUCK UP!!!!!!!!

    Reply
    • I truly understand her state of mind. I have cared for my mentally handicapped sister for 15 years and every day…everyday I live in hell. Theres been daysI knew being dead would be better then living like this. Theres no help out there. Theres no one to help me with her. The group homes are backed up for YEARS !!! Whats sad is her father has nothing to do with her..he walked away years ago..our mother died 4 years ago and before that she was to ill to care for her. Our brothers there a joke. They wont have her live with them, she would cause problems in there marriages and they wont allow that. My significant other ended things with me because she Lied and said he chocked her, he never touched her. Shes a habitual lier and narcissistic. She go’s to a “workshop” …what a joke. They teach them nothing but bad behavior because there Adults !!!! and Adults have rights !!! Believe me or not they even encourage and take them to VOTE….people who can’t read and sure cant comprehend the issues. But they have rights…I TOTALLY understand this womens mind set at the time. She should not spend her life in prison. I have no respect for her husband, where was he when she was being beat by her own child ? Not once but twice so severely she was knocked out..smh. This child needs to be in a institutional setting so the other siblings dont have to live in fear. I fear one day she’s going to strike out and hurt or kill one of them. Then people will open there eyes. This child has proven shes dangerous. I pray Kelli gets out of her prison.

      Reply

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