The Status Woe and the Status Quo: Challenging them both to make life better for our spectrumite population

The Status Woe and the Status Quo:

"If there is anything I’ve learned in my relatively eventful life, it’s that I’m not special or unique.  If something has happened to me, I know it’s happened to someone else...

There is so much more to say.  I’m just too tired to write more.

All my love,"

--Kelli from "When a Power Player Takes you Down" 3 September 2013, The Status Woe

The Status Woe and the Status Quo:  Challenging them both to make life better for our spectrumite population

I am sure  many of us in the blogosphere have heard the story of Kelli and Issy Stapleton by now.  If you have not, then you can click here to read the article by Eagle Record.  

So many of us are stunned.  Kelli was one of us.

Most of us are left with our head spinning and trying to figure out how this could have ever happened to someone like her—someone strong, and loving, and educated, and involved.

All I can do is try to make sense of it myself.

I don't condone or excuse Kelli's tragic choice to end her daughter's life--rather I believe you can't fix something you don't take the time to understand.  This situation is obviously indicative of a very complex problem within the framework of systems for support and treatment for families with children with severe autism. The problem here was fourteen years of failed systems.  Fourteen years of hearty advocacy culminated in all of the eggs of one family’s sanity in one single basket, a single answer for Issy’s aggressive behavior problems--the behavior plan. It cost the Stapleton family around $120,000 to get that answer. They put everything they had into a solution and trying to make it work. They went public, begging for donations. They sold T-shirts, had fundraisers. 

THIS. WAS. IT. 

And then her last blog entry. 

Read it and it gives a perspective. 

In fact, before you go on, read her ENTIRE blog.  

Everything they worked for, their last grasp straw from the perspective of a Mom who had nothing left was taken from her. 

Do I think the Mother did the right thing--NO. 

But she chronicled this journey quite well--and it is plainly obvious that the system failed Issy and in turn failed the entire Stapleton family.  This system continues to fail other families every single day.

I gather from the blogs that Kelli probably thought that she was making the best of a bad situation.  She was trying to be humane.  Like some Maternal Dr. Kevorkian, she was trying to give her affected daughter peace and her abused daughter safety.   I don’t agree whatsoever with what she chose to do, but I feel if I want to solve the problem, then I have to understand her perspective.

I have euthanized pets before and it is an excruciating decision; I understand this from a heartfelt perspective.  As I understand how my grandfather could commit suicide because he was in too much pain to live a quality of life with cancer. That takes a lot of emotional commitment.  What could cause such an emotional commitment for a mother to kill her child?

It happens more than we’d like to admit.

But, it shouldn't happen.

It shouldn’t happen to these kids and it should  never have got this far. 

Kelli asked for help in all the right places.  

(again, I reiterate, I am not trying to excuse Kelli, but rather trying to see from her perspective so we can solve what I feel is a growing problem.)
 And still, this is what happened to Issy.

I know a family like this--a family in a very similar situation. I know them well and I understand that the system fails them regularly. Despite that we live in the same area, the same one that has amazing services for MY YOUNG child, but nothing left for her teen, a teen who was just hospitalized for the severity of his traits. 

From the outside there are a lot of what ifs….

There are two ways to judge a situation: “right or wrong” or “how and why.”  "Right or wrong"  is commonly judged in the court systems of our country; understanding “right or wrong” gives us emotional and logical justice.  It makes us feel safe, makes us feel that perpetrators will have justice served to them.  It is a reactive form of judgment, waiting until a criminal intent or behavior has occurred and meting out a "right or wrong," judgment up on that concrete event.   

On the other hand, “how and why” are the ways for we humans to figure out how to let it never happen again to anyone else. It is proactive involvement in trying to stop a problem from happening again.
How are you judging this case at this very moment?

If you are looking only to feel morally better and safer, then by all means.  Stop at “right or wrong.”  You have that right.  You are feeling normal human emotions and you need have no shame for feeling them.  You care enough to feel emotions about this case, and that is a great step.

But if you are outraged and you want this to stop, let’s all use our energy and extend our focus on the “how and why.” 

It's okay to believe this mother did WRONG, but want to know HOW and WHY they she it and so that we can do all that we can to stop it from happening again to anyone else.

I think there is an issue with this in the media.  If we don’t stop at “right and wrong,” then we are defending the person whom we feel so abominably about. 

But that’s not the case.  If we do REALLY care about these kids, we need to go past “right and wrong,” and focus on a solution.

Because isn't that what we do for our kids?? Every. Single. Day?

Instead of stopping at judging our children’s behaviors as right or wrong, we take the time to figure out HOW and WHY our children have those behaviors so that we can properly create a solution. It's why we go to therapists. It's why we use interventions. It is why we preach finding teachable moments and why we have studied psychology and medical biology and read and write books on the subject and why we do research. 

Please, for those who think I am defending this mother, please understand, I am not defending the choice to kill a person who does not have the capacity to make their own decisions despite that I am hurt that this could happen to one of our own. 

But rather, Kelli and Issy’s story gave to us something that IS valuable. She recorded her journey, and it should be read--and studied--and compared to others with journeys like theirs--for us to see what we can do to keep this from happening again. Otherwise, we are spending our energy stuck on “right or wrong” rather than “how or why,”  and what we end up doing is treating the SYMPTOM not the root of the problem.   “ How or why” answers results in positive changes. It makes things happen.

I don’t know what to do to solve world hunger, but what I do know about Autism, advocacy, safety, and human rights is that we need to come together as a group to advocate for the needs and services of our spectrumite loved ones—to fill in the gaps that leave them vulnerable. There needs to be a federal level plan to do more than just throw money out to pasture, for research that ends in “if you are fat your child will have autism and if you are skinny your child will have autism;”, federal level laws for insurance funding regarding research backed methods of interventions and medical services, federal level standards for care like we have for our NT children by school professionals. Our military families are often failed when it comes to serving children with autism. School districts openly pick and choose who is WORTHY to be served or to have money spent on. Insurance companies have the right to care less. 
And this is the result. This horrible, tragic result. 

I pray for this family and I pray above all for every family--and for enough solidarity to make a difference in how the systems of our country (the US) and other countries perceive and treat autism on the whole.

You see, I spent some time myself on the “how and why,” and this is what I see:

I see an issue happening like this in a lot of places. 

I see it being obviously a fatal issue, a fatal flaw in the systems of treatment and support available to individuals on the spectrum. 

I see a woman who I and others respected deeply for her work and her tireless efforts. No she is not the strongest of us; she says son her blog, but the point is SO MANY other parents who are connected in the blogosphere KNEW her--and respected her. She wasn't the one anyone would have expected to go this far, ever. EVER. 

She DID call emergency officials several times. She was hospitalized several times. SHE DID utilize that. 

Her blog pointed to her decision to try to end her and her daughter’s life being made because she felt like there were no more viable options to protect her daughter from herself or herself and her other children from her daughter.   

It was not the decision I would have ever made--and I don't think anyone thought it was the decision that she would have made. 

But the issue was the choices she “felt” she had—either to institutionalize her and recognize that it would probably mean that her daughter never get the help she needs, living only prison-like conditions or to make some sort of compromise and the compromise she found was murder-suicide, a choice that so many people resort to, whether bullied teenagers shooting kids at schools or lost souls shooting families at theaters or parents euthanizing their own children--AND THAT, my friends, is a huge, huge problem in our world today. For the safety of children like Issy Stapleton, Alex Spourdalakis, and the others that this happens to every day around the world, something needs to change in the system. 

Parent failures are too common here because there really is an extremely broken system of support. 

I have high expectations of people. I live myself with high expectations of myself and others because I believe we should live our lives using the tools we have to be the best we can with what we have. 

I don't, don't, don't condone the choice that Kelli made to take her daughter’s life with her own. I am heartbroken over this situation because I felt Kelli was one of us.  I don't take lightly to this sort of thing.  I preach often about taking responsibility for the self and our own feelings.

Before this happened, Kelli would have been the kind of person I would have liked to have coffee with.

She was THAT kind of smart, enduring, engaged.  Took that sort of responsibility for her actions.  

If it happened to HER, someone with so much fight and a huge toolbox and deep love, then by Jove it means that there are a lot of others at risk, too.  And if we spend more energy demonizing  the perpetrator rather than seeing to the issue, then statistically and psychologically speaking, we’re going to see this happen again very soon.

I believe that we parents of children on the spectrum are not handpicked for special traits that make us candidates for special needs children.  While I feel like there are blessings involved with every bad situation, not everyone has THAT tool, the tool for strength or wherewithal or for patience or for dealing with grief in their toolboxes of life . We have a child, we get our lives, we live within what we have and we work to make the best of it. 

Not everyone born into parenting special needs children or even neurotypical children are STRONG or RESILIENT or SMART or CAPABLE or has a sense of self. I see it everyday, have seen it many times in person in a professional capacity. 

Knowing the situation does NOT excuse Kelli but I know that this entire situation isn't without some value either. 

It again hits home the point--if a pillar, someone who fought for all of us so hard (and she did, she was a huge advocate in general, helping others as well), then it can AND WILL happen to many more. 

We need a solution. We won't get that solution by backing two different sides of a coin. We can be pro-vax, anti-vax. Half of us back one bill, half of us back another bill, etc. 

HOW ABOUT THIS? 

How about we look at this situation as a way to say Issy and Alex and the many others’  tragic endings SHOULD NOT EVER HAPPEN AGAIN. In order to make that happen, let’s take a moment and focus on solving THIS particular problem. Put away the vax/anti-vax, the fat/skinny mother cause, the other things as well. I know they are important to you as my beliefs are to me, but this is MORE important and it is urgent.  Let us put those things away for a minute and EVERY ONE OF US pen a letter to our congressman asking them to think about that little girl and others like her and to make them a PRIORITY. To get them humane services.  To not make them so difficult to attain.  To make them financially affordable.  To not make an entire state (as in Michigan) vie for a SINGLE MEDICAID WAIVER to help kids like this. 

Because Issy deserved more than this. Because Alex deserved more than this. Because our own kids, who are affected by what the media portrays autism to be--traumatic, miserable, waste of life, should be institutionalized because they can't be cared for--affects EVERY SINGLE ONE of our kids. 

Because it affects my friend whose son has dangerous tendencies has been told in the most legal words and politically correct words possible for a mother to hear that her son doesn’t need services like that.   Because they cost money.  And they cost school districts money, money they don’t want to part with. 

While other children get so much.   

In the same area. 

From the same Department of Education. 

Because HER son is affected like Issy. 

And HE deserves more. Just like every other one of our children. 

We can be angry about this; anger is normal. Outrage is normal. Hurting for Issy is NORMAL. But I'd really like for everyone to USE that anger and that heartbreak to get something DONE. 

USE it to advocate relentlessly for autism insurance reform. For my US families, for Tri-Care autism coverage reform. For school district reform. For Multi-disciplinary team reform. For having a 24/7 Autism Crisis Care line EVERYWHERE--not just in big cities or in certain regions. FOR EVERYONE, EVERYWHERE. One that won't make a parent feel like it's not an option because they will be offering their child up to be caged and know very well that the state will most likely NOT give back that child nor offer them any help beyond treating the symptoms and not the problem. Restraining them instead of giving them therapy and guidance. One that results in caring and respect and KNOWING that your child is going into somewhere BETTER, not worse than where they already are.  Knowing that there is a resource worker who will help the parent make the situation BETTER.

If you have that in your area, consider yourself lucky. Most don't. 

And they should. 

For Issy.

For Alex.

For every child's safety. 

Because they didn't get it when they needed it. And it's not right and it's not fair to them or any others who are in these situations.

Kelli was WRONG for what she did. But if there was a third option? A BETTER option?  THAT is what this raises the issue for--BETTER options for our kids in emergencies! Safer options! It shouldn't have to be a choice to give your kid up for fear that your child will be forever stay lost and heavily medicated for the rest of an individuals life or to feel that it’s something COMPARABLE to offer a peaceful death. LIFE needs to be an option! Thoughtful, educated, well-understood options need to be available. Options that understand the complexities of parenting a child so severely affected. 

In our area (and I believe nationwide in the US), there is a service called Bethany Christian Services. We had a representative in our offices at the non-profit I worked with. One of the wonderful programs they had implemented for our area which is horribly overrun with child abuse, poverty, and drug abuse since Hurricane Katrina devastated the region, was called the Safe Families Program. The premise is to offer safety during times of turmoil for a family. It is putting a child in safe hands when a situation has become unsafe, whether it is because a parent is battling addiction, has become homeless, or is having an emotional breakdown. It is NOT putting a child as a ward of the state, but rather, putting them in safe hands, but still having every bit of rights for the child. 

http://www.bethany.org/main/safe-families-children

WHAT CAN WE DO TO PUT THIS PREMISE IN ACTION FOR OUR SPECTRUM KIDS IN A SETTING SAFE FOR THEM? WHERE IS A HOSPITAL WITH A BED OR TWO FOR THIS? WHERE IS A FOUNDATION THAT CAN COLLECT DONATIONS AND SPONSOR FAMILIES FOR THIS? WHERE IS THE STATE AND FEDERAL SUPPORT FOR THIS, THE GUARANTEED INSURANCE COVERAGE FOR THIS??