We Do Need To Talk About The Whys...

I'm just going to dive on in here...

When Kelli Stapleton tried to kill her daughter and herself, I was very black and white on the issue (I wrote some posts last September you can peruse, I won't link to them all individually.) Murder is murder, and every fiber of my being screamed at how wrong it all was. I felt no sympathy for Kelli. None. I wanted her in jail. I wanted her punished. I wanted an example to be made so that the public knew autism wasn't a reason for murder. I didn't want to talk about the "why's", because to me that felt like looking for an excuse as to why Kelli did what she did. Or finding a way to excuse what she did.

I was angry that the same people who railed against the murder of Alex Spourdalakis didn't react the same way to Issy's attempted murder. That because Kelli had a blog and was active on social media, somehow she mattered more than her daughter. We saw her side of the story, whereas with Alex we saw his. That the only reason people jumped up to defend Kelli was because people knew more about her than Issy, and if Alex's mother had blogged about her experience, instead of telling us about Alex, she would have fared better in the court of public opinion, too.

In all honesty, none of knows what really went on in the Stapleton home, or how Issy was treated. We never know the inner workings of a stranger's life (which is what we all really are, when we only meet online.) I was in the small minority of people who wasn't moved by the video Kelli put on her blog of Issy's violent meltdown, at least not in the way she wanted. I was upset that a mother would videotape her child at her most vulnerable, and seemingly egg on an attack to show the world. It rubbed me the wrong way from the beginning, and I admittedly hid from my timeline any mention of Kelli, thereafter.

I vehemently believed that parents should never come to the point of murdering their children because they just shouldn't. As though thinking that way is enough. It shouldn't happen, so there's no reason to try and understand any "whys", or figure out better ways to support families. Just don't kill your kid.

A year later, I still don't have any sympathy for Kelli. I have, however, tried to think about what happened by replacing Kelli and Issy with families I know. Women whom I respect and have treasured friendships with, if only online. What if one of them did the unspeakable? Reached the point where, for whatever reason, taking a life felt like the only option. Would I be as black and white? Would I not want to talk about the "whys"? Would I think that trying to make sure families don't reach this point was somehow excusing the act itself?

So, something changed. I realized that while I do not condone or understand what Kelli did, the truth is, families do reach this point. Wishing it didn't happen isn't helpful. Shutting down any conversation about how we can keep parents from reaching the point of no return only places more kids in danger. If I truly care about the other autistic children out there, and don't want to see headlines like this again, there does need to be a conversation about the "whys", and there does need to be a conversation about how to better help families. Having this conversation doesn't make the crime any less of a crime. It protects children like mine from being harmed when parents reach the end of their rope, with nowhere to turn, and services that they believe just won't work.

Something else that made me realize I needed to change my thinking happened when I posed a question/concern to an online autism group, recently. I found many families were struggling in a similar way, yet none had any idea what to do. No doctor or therapist had helped. No one had any answers or suggestions. We really are a community that is sadly lacking in support, and sees an unbelievable amount of money poured into researching how to prevent the diagnosis our children carry, but no money poured into helping the kids and adults already here. Our kids matter, and we as caretakers matter. We all deserve to be happy, healthy, and supported.

Murder is always wrong, on that I remain unchanged, but being unwilling to discuss ways to prevent this from happening again and again is also wrong. I wish I had the magic answer, but I don't. At least now I understand we have to ask questions and look for an answer, because not having this conversation means more kids will suffer like Alex and Issy, and that shouldn't be OK with anyone.

Seriously, Enough is Enough.

credit

I was perusing Twitter this morning, when I came across a string of tweets that I wish I never saw. Not because I want to turn a blind eye, but because I wish they didn't exist in the first place. Unfortunately, they do, and as much as I want to go on my merry way with this blog, and not continue to write post after post on the same subject, I just couldn't  leave it alone.

I won't give out Twitter handles, but here is part of the conversation.

"When you cure my Autism, you cure my originality".

Innocent enough. One person's opinion. No big deal. Until...the responses. Here are a few:

"Originality - that's a hell of a name for severe disability - get real".

"In severe cases it can be a lifelong drain of unconditional love. Yes...drain".

"My two children are a great gift to me. Autism - yeah, not so much".

There were a few other responses, but they are more identifying, with the names of children, so I left them out. I ended up clicking on the profile of the original poster, and found out she is 13.

Thirteen.

I am hoping none of the people who responded to her took the time to look at her actual profile, because if they did, saw she was a child, and still decided to respond that way? Well, there are no words. Not words that I want to use here, anyway, unless I want to change my blog to 18+.

Here is a girl, barely a teenager, sharing how she feels about her own autism. Let me emphasize this: her own autism. Because she is the autistic one, after all. She can speak to her own experience, and that should be respected. Even if people disagree with her, basically cyber-bullying a child is inexcusable. Period.

Telling a child the condition with which she lives is a drain on a parent's unconditional love?

Telling a 13 year old to get real?

Response after response telling her how wrong she is, and that autism can only ever be a terrible, horrible thing?

And we wonder why people sympathize with murderers. We wonder why there is so much abuse in the special needs community as a whole. We wonder why kids commit suicide, after being bullied, and feeling unsupported.

It makes me feel physically sick.

When we are so stuck in our own self-pity, our own martyrdom, our own negativity, that we don't even think to see who we might be hurting when we open our mouths? Something is very, very wrong.

When you think it's OK to tear down a 13 year own girl, who is comfortable in her own skin, and doesn't see her autism as a curse? Something is very, very wrong.

When you understand why parents would murder their child? When you feel an outpouring of compassion for those parents, and blame the child for their actions? Something is very, very wrong.

When all you put out into the world is negativity, and darkness? Something is very, very wrong.

I've had it. I really have.

I hope others have had it, too, and we can work together to make sure every child is safe. Let's change laws. Lobby for our kids. Be on the look out for signs that a parent is about to go over the edge, and stop these tragedies before they happen. Let's make sure the outside world knows autism isn't a reason to hurt your child.

Let's make sure a 13 year old is safe to go online, express her opinion, and not be verbally assaulted by adults.

When your hatred for something makes you attack an innocent child, it's a sign things have spiraled out of control. Yes, everyone is entitled to their own opinion, but when our opinions become toxic? Enough really is enough. Our children deserve better.

There Are Always Two Sides

When you read a person's blog, their tweets, their Facebook page, the important thing to remember is you are only getting one side of the story. No matter what you read, no matter the stories you are told, there is always another side you don't know about. Always.

A few years back, when I started blogging more about autism than my trips to Target, we were in a dark time. K's aggression was at it's height. I won't go into details about things that happened, but at one point I thought K and I were going to have to move out. It was time when we made appointments with every doctor and therapist we could. When we had IEP meetings every month. When I felt so defeated, I wondered how I'd make it through the day.

And I wrote about it on my blog. I went into far too many details, not thinking twice about my daughter's privacy, or how the world was going to view here through reading my blog. Of course, I had people emailing me their sympathies. I had people tweeting me, and supporting me on FB. No one ever asked what the other side was. Why K was having such behaviors. What we were going to figure it out, or, yes, what part my husband and I played in the situation. People didn't think about K. I didn't think about K. I thought about myself, and how hard my life was, and that was all I wrote about. Looking back, I see what a huge part I played in making those days so dark. How horribly I handled things. How I ran us all ragged with those doctors and therapist appointments. How I was basically telling my child through my actions how bad she was, and how she was ruining all our lives.

At the time, I didn't see it that way. If someone had asked for the other side of the story, or tried to make me think differently, I probably would have cut them out of my life. I said how much I hated autism. How it was a parasite that was keeping K from being who she was truly meant to be. I did everything in my power to fix her. We spent every spare dollar we had trying to remove autism, and that's no exaggeration. We couldn't afford much else, especially since a lot of things at the time weren't covered by insurance. I barely saw my husband because I was gone 4-5 nights a week with K. My marriage suffered. My son was dragged along to appointment after appointment. It consumed my life...trying to break K free from the big A.

During those years, admittedly, it was all about me. How I felt. What I was doing. How hard life was for me. I was living in a world of self-pity. I was a martyr for the cause.

It's difficult, reflecting back on those years. I spent so much time trying to change my child, I never stopped to wonder if she really needed to be changed. I didn't stop to see how hard life was for her. I didn't take two seconds to see how the decisions I made were affecting my child. What wasn't working. What was best for her, even if it didn't align with the gold standard of autism treatments. I take a lot of responsibility for those years, now. Most of the responsibility. I probably deserve it all.

I'm ashamed at how long it took me to just leave my child alone, and be who she is. She doesn't have to be typical to be a enjoyed. She hasn't been taken hostage by autism. I've learned to listen to her, spoken word and not. I used to blame our old speech therapist for dropping K as a client bc of her behavior issues, but the thing is, K was telling us all that it just wasn't working anymore. I was too stubborn to listen. Behavior is communication. Always. I just never listened. I knew best. I was the mom.

K still has her days. The difference is, I just let her be. Forcing anything always makes things more difficult, and autism isn't something to be conquered. It's just how her brain is wired. We tend to personify it, making it something it isn't, and that's what gets us in trouble. Autism is a word we use to describe a certain type of neurology, but it's not alive. It's not doing anything to anyone. It's not evil. It's not some separate entity we can kill off, no matter what some people believe.

Here's the thing, we all have our own opinions about autism, and that's fine, but only if our kids are safe. The second we start doing things to our children that are potentially harmful, burning ourselves out to fix them, making them feel like they are less, then it's not fine. Our children, no matter how severe, are people. Human beings, with thoughts and feelings and emotions. They have a side of the story, too, and it isn't just about us as parents. We have to be honest about our kids, our shortcomings, and what is really beneficial.

I never thought I'd be on this side. I never thought I'd step away from hating autism. I rallied against it for so long, and I did cut people out of my life who I thought were judging my parenting. I was angry, and lost, and depressed...and I made myself that way. And it was never my child's fault. We choose how  we live, and we can't live in such a negative space forever. If we do, then things like last week happen, and they just can't.

I also want you to be aware of how those not in the autism community view us. I was reading a People article today about the incident last week, and I was sickened by some of the comments. How, after reading this mother's blog, some believed she should be freed. That it was completely understandable, trying to kill your child in that situation. That one side they read, her words, made them think she hadn't even committed a crime. Her life had been so hard, all because of her autistic daughter. No mention of what that child went through. It's easy to say these things when we don't see both parties equally, as human beings. When one is seen as damaged, and less.. Because that is how these people see Issy. As less. As having done something to make her mother attempt murder. It's all her fault.

And I say again, there are two sides of every story.

TWO.

When the outside world (and even those inside) think a mother shouldn't be punished for trying to kill her child, because autism is so awful, and her life was so hard, then we have failed as a community. We need to stop fighting one another, and work together to keep every child safe. They should be our #1 priority. I hope we can all agree on that. You can continue to hate autism, and send that message to the world, but just realize how that message shapes the opinions of others. Stop and decide what message you really want to send, and how much our children are worth.

For The Children

A few months ago THIS happened. I blogged about it HERE.

And everyone was angry. People came out to condemn these woman for killing Alex. A man-child, with severe autism. How could anyone do that, we asked? There is always another way. I read blog post after blog post about how wrong murder was, regardless of the situation. Alex deserved justice.

Then, two days ago, THIS happened.

And suddenly, those same bloggers, those same autism parents, backed down.

This woman tweeted. She has a blog. A Facebook page. People had spoken to her online a couple times. She couldn't possible be a monster. Not like Alex's mom, whom they had all rushed to vilify day one.

Now, I am not speaking in this mother's defense. Far from it. What made me almost more sick than the actual situation, was the reaction within the autism community. That there must be more to the story, some other explanation, because this mother tried to help her daughter.

And Alex's mom tried to help her son.

But Alex's mother didn't have a blog. She wasn't sending messages on social media. Easier to condemn that way.

The truth is, I don't care what is going on in your life, murder is never, ever, ever the answer. I have been there with aggression. I have friends who have gone through worse things than either of these two families. Murder is never on the table.

It is the most selfish thing, taking someone's life. Trying or taking your own. Giving up so completely, you'd rather kill your child than do anything else. Than move. Than continue to fight. Than seek help for yourself, and not just your child. Loving your child means going to the ends of the earth to help them, regardless of how hard it is for you. They come first. That's the deal we all make when we decide to be parents. If you can't do that, you give up your right to be a parent. Even that is better than murder.

I get depression. I get not being able to get out of bed in the morning because life can be so.damn.hard. I get watching your family be torn apart because of your child's diagnosis. I get fighting the school so hard, you aren't sure you'll ever recover from the trauma. I personally get all those things, although none of them are the fault of our children. They cannot be blamed for our shortcomings as caregivers, or our inability to handle a life different from what we imagined. There is no way to justify killing, or trying to kill, your child. It is cowardly. It makes you a bad parent. There is no way around it.

The fact is, these kids need help. They need people to stand up for them, and find ways to  keep them safe. There has to be a safe haven.

Sunday, from Extreme Parenthood, said it well HERE.

I am not expert in changing or making laws. I don't know how to make a Safe Haven law for older kids. I think you need to start at the beginning, though, contacting your Senators and Representatives. Making phone calls. Sending emails. Harassing them. Not stopping until they talk to you. Being heard.

It's incredibly sad there are children that need to be protected from those who should love and care for them most, but that is reality.

Alex, Issy, all the other children murdered because of their autism...they need our voices to speak for them, now.

If you ever find yourself in a situation where hurting your child feels like the only way out, please, please, I beg you, call your own doctor. Reach out to others in the community! Anyone would be happy to talk, for hours on end, if it meant keeping your child safe. I don't care how hard it is to ask, ASK! There is always another way. Heck, contact me. I'll come to your house and help you myself, or find someone who can! No, there isn't a magical solution, and laws won't change tomorrow, granting parents unlimited resources for their child. While we fight for those things, we need to be here for one another. Let other parents know, murder is never the answer.

It does take a village, and maybe sometimes it can see really lonely, but please ask for help. Stop and look at the face of your sweet child, and know there is always another way.

In Case I Wasn't Clear...

Murder is wrong.

Period.

First, Do No Harm

I have two children on the spectrum. Very different, yet much alike. They are who they are, and I love every piece of them. If I could literally carry them around with me in a kangaroo pouch, I would.

But, something has been drilled into me since receiving their diagnosis. That I have to help them. That I need to send them to this therapy or that. That society won't accept them how they are. That they need to change.

So I send them off to speech therapy, occupational therapy, social groups, counseling, ABA. In school, outside of school. Forget after school activities, we just have therapy. Even the fun stuff is not typical...it's fun stuff meant for those with autism.

I don't think twice about it. I'm their mother, and it's my job to do everything in my power to help them succeed in life. To be happy and independent. To find fulfilling jobs, and have fulfilling relationships. Because success is only measured one way. By what people consider normal. By the achievements of typical peers.

Lately, though, something has been bothering me. The fact that my kids, at every turn, are being told that they are wrong. That how they think is wrong. That how they behave is wrong. That being autistic is wrong, and they have to change who they are. They must fit into a specific mold, and if they don't...

Wrong, wrong, wrong, wrong, wrong. 

I can't fathom going through each day being forced to change who I am because I'm not "normal" enough. I can't imagine what it's like to set aside who I am as a person, so I can earn stickers and pick a prize. To memorize scripts of what it's like not being autistic so I don't get in trouble, or lose my favorite activity.  Allowed to be myself only when a cute picture can be taken to show "acceptance", or so my parents can claim they respect all that I am.

Even in small ways, we are telling people something is desperately amiss. It leads people to feel sympathy for parents when they kill their children, because those kids (and adults) were just wrong.

Worthless.

Empty. 

Incapable of thought. Feelings. Barely human. 

What am I putting out into the world about my kids? My kids who are my life, my loves. I claim to accept them, while spending every extra penny on things that scream, something is wrong here! 

We place the burden of acceptance on our kids. We don't teach their peers to accept them. We teach our kids how to be accepted. 

It's not OK.

I've seen what this year has done to my kids. My children who have been told in so many ways, by so many people, that they are not good enough. That they are bad. That they need to change.

And I wonder why they aren't happy. Why their self esteem is shot. Why they hate school.

The murder of Alex Spourdalakis not only devastated me, but awoke something inside me. The fact that because our kids are looked at as less, things like this continue to happen.

I am supposed to protect my children, but I now realized I've failed. I've inadvertently made my children feel as though they are not OK. I've allowed them to be around people who drill that into their brains. Not that anyone did anything malicious. We all thought what we were doing was right. It's what every doctor and teacher and professional told us to do.

But, we were wrong.

Wrong, wrong, wrong, wrong, wrong.

What we put out into the world about autism is why there is no help for our kids. Why people look at them like they aren't whole. Not worth time, money, care.

I really think it's time to take a good, hard, look at what we are doing, and why we're doing it. What we are conveying about our children. About autism. How truly accepting we are of our kids, and if we are doing more harm than good.

All I know is something has to change, because human beings are being murdered (abused, mistreated, silenced), and it needs to stop.

We need to start really presuming competence, and seeing a person, not a diagnosis. Teaching our most affected to communicate, making that a priority above all else. Giving them a voice, because they are people who deserve to be heard. 

We must look at our higher functioning kids, and realize how our words affect them. Even if they don't come out and say it, put yourself in their shoes. Say this, do that, act this way...all of it telling them they just aren't good enough. Even coddling them, lowering expectations and treating them with kid gloves, sends a message of inequality, not just to them, but to the world. 

I don't know all the answers, or how to be a perfect parent. Not by a long shot. I just want my children to know they are good enough. Worth as much as any one else. That I am here to support them, and keep them safe, but not change. Not fight. I am on their side. I will follow their lead. It's not about me, the parent, it's about my children. All of our children.

Your children.

And the people, children and adults alike (because autism doesn't go away at 18), who have suffered at the hands of their caregivers, who deserved so much better.

When Murder Becomes the Only Option?

Let me start out by saying, 100%, I do not condone any parent murdering his/her child, for any reason. I don't care how hard life gets, killing an innocent person is wrong. Period.

(Please read each link before continuing to read this post). 

A lot of us within the autism community first heard about Alex in this story. A young man left to languish at a hospital, not getting the care he required for medical issues, due to his autistic behaviors. It was heartbreaking to read about this mother's struggle to get help for her child. How could anyone allow a child to suffer like that? There were petitions and pleas for calls to be made to the hospital, begging for someone to help this child.

But, I admit, I lost track of the story. Life happens, and after the initial shock and outrage, it slipped from my mind.

And then this happened.

I thought to myself, is that the same boy? The same one that was locked away in that hospital for so long, not getting care (according to his mother). It couldn't be, I thought. It couldn't be the same child. His mother was fighting tirelessly for him. There was no way this could be the same young man I read about weeks before.

But it was.

And I felt sick.

I'll be the first to admit I do not know what life is like with a severely autistic child. That is not my world. I would never claim to understand the lives of these children, or their families. But, I know murder would never be an option.

What upsets me, too, is how this family was failed. And not just by the government, or the hospital. By members of the autism community, like me, who forgot. Who got lost in our daily lives, while Alex's story faded into the background. We want services for our children. Help for families. Yet, most of us do nothing beyond posting a story to Facebook, or writing a soon forgotten blog post. Blog posts and status updates don't help families. They don't help autistic individuals like Alex (I am in no way using the lack of servies as justification. There is no justification for what this mother did. The thing that matters is this boy did not get the help he needed, and that's not OK. It's about him, not his mother).

I'm ashamed that I forgot about him until yesterday.

I don't deny life was hard for his mother. I cannot, and will not, defend her actions, though. Alex was a person, not a diagnosis. He was a human being who deserved so much more, including not being forgotten about by his own community.

We can all do something. Write a letter (many letters!), contact our legislatures, do what we can to fight for kids like Alex. There should have been somewhere for him to get help. Real help. Regardless of what his mother believed, or who disagreed with those beliefs. It's not about that. It's about a person!

You don't have to buy a plane ticket to D.C. and march on Capitol Hill to make a difference. Maybe it feels like our voices won't be heard, like one person can't make a difference, but a lot of voices will, have to, make a difference. Our kids shouldn't be murdered. There needs to be help for them! Kids like Alex...for whom autism is a matter of life and death.

(I know Age of Autism is not a favorite site to some, and I certainly do not go along with a lot of what they believe, but they have several posts on Alex's situation that I think are important to read, just because they provide more specific information on his case. In no way am I looking for a debate on bio-med, or anything else. It's just gives a bigger picture of what this poor kid was going through. What he was going through, beause in my opinion he should be the focus. Not the ones who decided to take his life).

Here, Here, and Here.