“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.