Friday, October 17, 2014

Reflections Coming Out of A Meltdown

Dearest Daughter,

At the time of writing this, you have been screaming/crying for almost the entirety of six hours since I have been home from work. Before that, you spent the prior four hours that I was away screaming/crying at your father. And the 24 hours before that were more of the same.

You have slept less than three hours in the past day, and your entire body and mind have been pushed to their absolute limits.

You are enrapt in a complete physical breakdown, overwrought by your weakened immune system, and have worked yourself up into a frenzy of panic, exhaustion, discomfort, pain, and desperation.

My poor, darling child. I have never seen you this sick.

And yet, at this moment, you are not in my arms.

You are away, with your daughter, in a car…being driven around in the desperate hope that you will finally fall asleep.  You are strapped in a car seat, and are likely angry, hurt and confused as to why your Mama isn’t there with you.

I don’t blame you.

I would be angry with me too.

In fact, I am angry with me. And I am ashamed. And guilty. And very very sad.

And still, this is the right decision for you. And for me. And for our entire family.

Because in this moment, I am not able to be the mother that you deserve. The mother that you desperate need me to be.

In this moment, I too have been worked up into a frenzy of emotions. I am also overwhelmed. I am also in the midst of my own physical, emotional and mental breakdown.

You see, my brain works different from most people I know. It’s a lot like Sam’s. (It’s possible that it might be like your brain too, but I can’t tell that for sure since you are still so young.) It takes in sensory information more fully, and has a hard time processing it and making it all work together.

Colours are brighter. Smells are stronger. Things I touch feel more intense. Tastes can be completely overwhelming.

And sounds…

Well, sounds are the most powerful sense of all.

And sometimes, in completely unpredictable ways, these senses will all work together in such a way as to make the environment come alive in ways that other people could never comprehend.

Did you know that different colours can have different tastes?
Or that certain textures can have smells?

I do.

I also know what it is like to see music dance.

There are few things more hauntingly beautiful.

They tell me this is called Synesthesia and that it is a Sensory Processing Disorder.

I don’t really know anything about that. All I know is that this is how my brain has always worked, and that this difference sets me apart from many of my peers.  Sometimes, this difference is a gift. Sometimes, it is a disability. Sometimes, it is both at the same time.

For the most part, I am fortunate. The times in this life where I am genuinely disabled are few and far between. I have been blessed with a body and a mind that are able to navigate almost every social and environmental situation that I am subjected to. I have grown accustomed to needing an extra few minutes to adjust my eyes to the lights, my ears to hums, and my nose to the perfumes that can overwhelm me.

But sometimes, just sometimes, it all becomes too much. Sometimes, my senses become so engaged, so saturated with information that my brain simply can not keep up to the information and it completely overcomes me.

When this happens, I have a hard time making decisions. I have a hard time controlling my emotions. I have a hard time controlling my body. And I have a hard time keeping a grasp on what is happening around me.

Sometimes, I melt down. This happens in my mind, not in my heart. But that distinction is one that can be very hard to see from the outside looking in.

When I am melting down, I am not able to be a good parent to you. I am not able to be a good parent to Sam. I am not able to be a good wife to your daddy, or a good friend or a good daughter or a good sister.

When I am in meltdown, the only thing I can focus on is getting myself through it.

And that, my darling daughter, is why you are with your daddy right now.

Parenting is an intense experience. It is one that requires your full attention- physically, mentally and emotionally.

Parenting a child who is in a state of crisis- whether this be because of illness, injury, emotional need, or otherwise- is even more intense. It requires a state of parental engagement and alertness that exceeds the every day, as well as a resilience and fortitude to stay strong during the emotionally difficult moments.

Most of the time, I am able to be that parent to you. Most of the time, I am able to navigate that intensity, and live up to my responsibilities in caring for you.

But tonight- probably due to the fact that I am also sick, or the fact that it has now been three days of almost incessant screaming, or maybe just because the temperature is changing and my body feels the snow crystals starting to form in the sky above us- tonight, I just can’t.

Tonight, I felt my body start to shake. I felt my eyes start to blur. I could smell the anxiety in the room, and the entire room started to spin.

Tonight, I knew that my brain was about to get the better of me. I knew that I was minutes away from a meltdown.

And I knew that you deserved…that you needed…me to step away.  I knew that, even though you would not understand it in the moment, the safest and healthiest thing I could do for you would be to acknowledge my own needs and recognize my own limitations.

The best thing I could do tonight was hand you over to your loving daddy’s arms and walk away.

Sometimes, the greatest gift that we can give to another person is the self-awareness to know when we have exceeded our capacity to give. Sometimes, acknowledging weakness is the most courageous choice you can make.

Since I have started writing this, you and your daddy have come home. You are now in your room, and I can hear you breathing over your monitor. You are sleeping (for now, at least) and you are safe.  My heart is exploding with love for you, and I know that I won’t be able to resist creeping into your room later to kiss your cheeks and whisper that I love you.

And as I listen to your rhythmic patterns, I feel a sense of renewed resolve and commitment. Tonight hurt your feelings. Tonight hurt my feelings too.

But our sadness and hurt feelings will heal with the understanding that some decisions in life are painful, even when they are right. 

Tonight, as I pull myself back from the dark abyss that is my mind in meltdown, I know that I can say with an increased sense of confidence that #iamnotkellistapleton.

I choose humility and self-acceptance in the face of my disabilities.

In the face of my own mental health struggles, I choose self-awareness.

In the battle between my needs and yours, I made sure your needs were safely addressed before dealing with my own.

In the midst of a crisis, I remembered that I am the adult and that you are the child.

And that no matter what, my responsibility is to love you unconditionally and care for your needs above my own.

And, no matter how hard it gets, no matter how overwhelmed I feel, no matter how little more I think I can can take…never would I dream of hurting you.

Tonight, my first thought was of how to get you the best care I possibly could.

And I believe that I did that.

I love you unconditionally. And I am so sorry you are sick.

Monday, October 13, 2014

Dear Moderators of the Thinking Person’s Guide To Autism

Dear Moderators of the Thinking Person’s Guide To Autism,

You probably don’t know me- I’m not exactly a ‘big name’ in any advocacy circles aside from my own kitchen table- and I suspect that what I have to say is likely to be ignored given the much more powerful and influential voices that have already spoken to you on this subject. But, nonetheless, I feel compelled to write to you this week, compelled to express to you my disappointment and frustration with the events that transpired in multiple threads of your Facebook page.

I have held off on saying anything, as I believe I have the responsibility to allow Autistics to speak for themselves, first and foremost, on matters that pertain to their well-being. But as I have read the multiple posts (a few of which can be found here, here and here) it has become abundantly clear to me that there may in fact be a place for my point of view in this discussion. After all, your actions were taken in my name: the Allistic* parent.

(It should be noted here that my issues are secondary to those brought up by the Autistic population. It is not my intention or my desire to diminish these voices. Rather, I am hoping to add a new dimension to the dialogue.)

I am not here to rehash or restate arguments that have been made. Instead, I would like to respond to the one argument that strikes me as pertinent but that remains to be addressed: Your assertion that the actions taken (both in how you chose to initially censor the discussion, followed by your deleting the threads) were necessary steps taken to protect parents who were in crisis.

As a parent who was once in “crisis” when I happened upon your site, I feel that this is a subject on which I can fully speak.

TPGA, I want this to be made perfectly clear: Not only did your actions harm the Autistic population that you have claimed to represent and aimed to protect, they also harmed parents, progressive and non-progressive alike.

And there is significant damage that remains to be undone if you want this to be corrected.

First, I consider myself a pretty progressive parent. When I refer to myself as having been in ‘crisis’, this had much less to do with trying to process my son’s different neurology (after all, we did throw him a neurodiversity celebration the day that he got diagnosed as Autistic) and much more to do with the fact that I felt completely alone. I had no tribe. Everywhere I looked, I was bombarded with the “Autism Parent” culture- one in which I clearly did not belong. I needed to relate, but more importantly, I needed to understand. I needed insight. I needed hope. I needed experience.

When I found you, I felt that I found all of these things. There, in the community that you had built, was my village of like-minded parents, being led by those who were like my son.  There, amidst all the vitriol and fear, was a beacon of peace, hope and love.

(Ironically, it was also you who introduced me to Kassiane, who would become a formative role model for me, not only in how to parent my son but also in how to be a better, more intersectional and aware human being as a whole. She would also become my friend, one that it has pained me to see so pained.)

For the past two years, you have been one of the primary sources of my information on Autism and I have found tremendous guidance and support within your community.

But last week, you let me down. And you let down other progressive parents just like me.  How, you ask?

Whether it was intentional or not, by silencing the voices of Autistic people (and their supporters), you sacrificed one of the only spaces on the internet where I have not felt ostracized and rejected for my progressive views. In essence, by deleting our words and silencing our guides, you allowed the majority viewpoint of the ‘anti-Autism’ parent to permeate and poison our community- one of the few where Autistics and Progressive Parents were able to come together and work towards the common goal of Acceptance and love.

This was tragic and disheartening. But the ramifications are significantly worse than just losing my sense of community.

Inadvertently, what you have done has resulted in significantly weakening the headway that many of us progressive parents have made in creating a community in which Autistics and Parents can work together for change.

Over the course of the last week, I have watched as my friends and role models have posted repeatedly their reservations that ‘no space can be safe’ unless it is exclusively Autistic. I have watched the Autistic self-advocacy community recoil in fear of this type of event reoccurring. I have sensed trepidation in my relationships with them; have witnessed the chasm between us growing ever larger.

I believe that, for the most part, I have been able to mitigate this situation, at the very least within my own personal relationships. I have taken the time to reach out to my friends, to express my concerns, to re-identify myself as a committed supporter and friend of the Acceptance movement.

But it would be naïve for me to think that there is not damage to repair. And it would be naïve for me to think that the bonds that bind our two worlds are not weakened by this situation.

A fragile and tenuous relationship has been fractured; our communities once again being presented as ‘divided’.

And what is the most frustrating aspect of that is that the vast majority of posters on those threads, parents and otherwise, were in full agreement with each other. Those who were saying harmful, bigoted things were a very tiny, very vocal minority.

Unfortunately, because the threads were deleted, that fact will be lost in this discussion. This will be perceived as TPGA favouring “Paaarents”- and all parents, progressive and otherwise, have been tossed under the bus.

That is beyond disheartening. It is dangerous to our larger efforts, and it is harmful to my young son whose success and happiness depend on my ability to forge relationships between the neurotypical and neurodivergent worlds.

So, on that front, you have let me down. And you have let down parents like me.

But that’s not all.

Perhaps the cruelest, most dismaying aspect of all of this, is that you have actually let down the “parents in crisis” as well.

By failing to address the root issues that these parents were facing (ie: the genuine belief that their children are problems that are happening “to” them, as opposed to human beings that need to be understood, respected and connected with), you failed to address the one thing that could actually help them move past the crisis.

Unless the root of a problem is addressed, the problem will continue to resurface.

Parents who refer to their children as ‘animalistic’ or ‘psychotically violent’ are parents whose issues extend far beyond the immediate situation. Yes, they need crisis support. But crisis support, which validates the person, does not necessarily require validating the dangerous and harmful ideologies that are contributing to the crisis. That's one of the fundamental principles of non-abusive crisis management. 

It never occurred to me that I would have to explain this to you- you who have taken a strong stance against harmful language when discussing the murder of Autistic/Disabled people.

Words matter. Language matters. This is particularly true within the Allistic population that places an inordinate amount of importance on the ability to speak.

Just as we cannot allow for words like “empathy” or “understanding” to dominate the dialogue surrounding violence towards those with disabilities, so can we not allow language (and beliefs) that perpetuates dehumanization. This is precisely what words like ‘animalistic’ do.

In the threads, a significant amount of important information was conveyed to the parents ‘in crisis’. Genuine advice and support was offered from people from all walks of life. Yes, some of that was coloured with language that may be deemed ‘unparliamentary’ (though it is equally ‘unparliamentary’ to use ad hominem and attack your opponent without using swears…but I digress). But most of it was good information. Important information. Valuable information.

All of that information was lost. Lost to the OP, lost to those who commented in support of her, and lost to any lurkers in crisis who might have been following along.

So where will these people in crisis turn when the information that they are seeking is removed from them? Whom will they ask if they can not ask Autistic people directly, in a community that is safe for Autistic people?

I don’t have the answers to that. I desperately hope that they find other resources focused on support, acceptance and love. But I know all too well that these are few and far between in the sea of hatred and fear mongering that dominates the Autism Parent discourse.

Yes, TPGA, you let parents down. We came to you seeking guidance.  We came to you seeking help. We sought out the community of people you have built. And you, in what I believe to be a move of panic and fear, silenced this community.

By failing to delete and moderate the harmful comments, you inadvertently validated them.

By censoring and removing Autistic voices, you took away the primary reason that most of us are on your page to begin with.

And by deleting the threads in their entirety, you also deleted the wealth of experience, knowledge, perspective and advice that had been shared by hundreds of likeminded people, Autistic and Allistic alike.

TPGA, I was following those threads very, very closely. You see, I was sick last week and had little better to do than read every single notification that hit my Facebook feed. I read every single post. I took in every single comment. And I, myself, commented often- something that is actually very rare for me to do.

I saw how quickly the threads moved. I saw how overwhelming it all became. I understood your need for immediate and decisive intervention.

But how this intervention was handled was disastrously foolish and short sighted. And the ramifications of the decision will likely continue to divide our already stressed community more than we can afford.

In the future, I hope you will consider the following

  1. Apologize. For real. Truly and sincerely. While you can not undo your decisions, you need to acknowledge the harm that these have caused and take responsibility for how that has affected your community. (Yes, this includes apologizing to Kassiane, whom I believe firmly was scapegoated in this situation. I will not touch more on that in this post because others have already said what I have to say. But I am deeply disappointed and disgusted by how she has been singled out and mistreated.)
  2. Get more mods. (No, really. Just do it. Like, yesterday.)
  3. Learn how to hide threads as necessary to give you more time to properly address them, including culling harmful posts as per your comment policy. There is no limit on how many times a thread can be hidden and unhidden, and this can be a useful tool for moderating discussions that are moving too quickly to moderate in real time. (If you do this, explain your actions and supply an approximate timeframe for when the thread will be made available again.)
  4. Consider the implications of deleting threads in their entirety, including the disrespect that it shows every single person who took the time to post on them in an effort to share their knowledge, information and perspectives.
  5. Apply your rules fairly, with an understanding and respect for the fact that certain language/stereotypes can be greatly triggering to many Autistic people and can result in ‘crises’ of their own that are at least as valid as those of the parents.

I hope you consider these actions, but I’ll be honest when I say that I will probably never know if you do or not, since I no longer feel that your community is a safe place for my family and am unlikely to revisit it.

Friday, October 10, 2014

I am not Kelli Stapleton. But I wish Issy had been my daughter.

I am not Kelli Stapleton.

I am Zita, Sam and Charlie’s mom.

I am my own person and I am capable of making my own decisions. I am capable of acknowledging my failings and seeking support and help in being a better person and a better parent to my children every day.

What is often forgotten when discussing what happened to Issy Stapleton is this:
There was a series of events that led up to the awful, horrific climax of the attempted murder on her life. And these were not as they have been so often depicted by the media and by the cult following of the Status Woe.

Yes, there had been a long time struggle; one in which systematic and chronic abuse took place. Yes, there had been fights and yes, there had been harm.

But what is neglected is that- long before the attempt on her life- Issy Stapleton was the victim.

She was the one being fought. She was the one being abused. She was the one being harmed.

It was Issy who was fighting back in self-defense. It was Issy who struggled against dehumanization and degradation. It was Issy who lived a life in fear, in captivity, in oppression, and in abuse.

Long before Issy Stapleton was the victim of an attempted murder, she was the victim of a parent’s oppressive quest to destroy who she was.

What is also forgotten too often by the mass media accounts is this: Issy Stapleton was a child.

Kelli Stapleton was an adult.

Kelli Stapleton held the power in the relationship. Long before Issy had grown to be a strong young woman capable of fighting off her aggressors, she had once been a baby. A toddler. A preschooler. A tween. A pre-teen.

And in each of these stages of her life, Issy held no power.

Her communication was rejected. Her voice- her body- was silenced. Her rights were ignored. Her life was trivialized, ridiculed and even jokingly dismissed.

Repeatedly. For fourteen years.

From her very first posts, Stapleton’s obsession with ‘fixing’ her child indicated a mentality that extends far beyond the scope of mental illness.

So no, I am not Kelli Stapleton.

And I never could be.

Because what Kelli did- what was done to Issy- started a long time before she lit the charcoal barbecue. It started long before she struggled with the school system and reached a breaking point.

It started when she decided that her “wants” for her child should trump her child’s “needs”. It started when she decided that her child’s life was a burden and not a gift.

Kelli Stapleton’s decision to end her child’s life started when she discarded the reality that her child was a human being.

And while I may not be immune to mental illness, while I struggle with my own set of demons and obstacles to overcome, that is simply not something I could ever do.

I could never believe that my child does not have a life worth living.

My child is a person. My child is a human being. My child has the right to life, independent on how that affects me.

These are immutable facts, things that simply can never change.

I am not Kelli Stapleton.

I am Zita. I am Sam’s mom.

And I love him enough to recognize that his life, as unconventional as it may be, is valuable and beautiful.  

That is my truth. That is my reality.

My decision to not be Kelli Stapleton started the day my son was born.

And that will never change. 

I am not Kelli Stapleton. But I wish Issy had been my daughter. 

Issy, I promise you this: I will do better for my son than what has been done to you. 

Your pain will not be forgotten. 

Wednesday, October 8, 2014

I am Jeffrey Dahmer. (PARODY POST)

This post is a parody of another post that I will not direct-link here, but may be required reading for context. If you would like to read it, please use this link:

The original post is one that argues that all people are capable of harming their children if they are pushed too hard by stress in life. It uses the case of Kelli Stapleton and argues that Stapleton's story should serve as a reminder to us all that we are all capable of 'breaking' and committing equally horrible acts in moments of hopelessness and desperation like what the author claims Kelli Stapleton experienced. This claim is not substantiated by any research or facts.

And you are too.

If you think you're safe, if you think you are above succumbing to the insanity of mass murder and rape, you're wrong. 

Mental illness, (in this case 'borderline personality disorder') does not discriminate. Life circumstances don't discriminate. We are ALL wired to break if given the wrong circumstances. (And when we break, we are capable of any amount of evil. Rape, murder, necrophelia....even filicide...) When you are given more than you can mentally handle- and it doesn't have to be the social isolation, tension and abuse Dahmer suffered as a young child with one parent who was a a suicidal drug addict, and another who was a hardly present workaholic- the brain chooses dissociating over enduring the reality that is too hard to battle. 

Some things are just too much. 

In the years since Jeffrey Dahmer (which include the vast majority of my life experiences), I've battled my own depression. My own mental illness. This awful (terrible, incomprehensible, soul shattering? - there is no word for it) American tragedy has forced me to recognize that if one person can be a serial killer, anyone can. I could be. 

That is terrifying.

In writing a lot about mental health issues, I've encountered many other mothers, fathers, and caregivers that find themselves in Jeffrey Dahmer. That see how things can go so awfully wrong. It's not one week that breaks the backs of those who carry loads too heavy, it's a lifetime of little things, big things, sad things (like the ongoing child neglect and social isolation that Dahmer lived), adds up to a weight that too many crumble under, that too many could crumble under.

So what do we do now? What have we learned from Dahmer's crimes? How do we move forward in a world where we are all one step away from mass murder?

For me, it's finding my voice. It's saying what is the most painful even when I know it's putting entirely too much out there (I mean, really- who tells the world that they feel a strong connection to a child killer?) It's not standing silent in the fact of those who are foaming at the mouth to vilify me (because the death of children is clearly all about me) and anyone else who speaks anything contrary to the idea that killing children is a total understandable thing to do when you've lived a tough life. 

It's speaking the truth of what  I believe too many of us parents and caregivers experience, but are too afraid to say: My life sucks too much sometimes. I should kill people. 

Sure, we could be offered all the mental health support, therapy, medication and even- heaven forbid, intervention with removal of all vulnerable children from our care- but selfishness seeps in. Being overly self-involved and unable to see that my child's life is not actually mine to control or end does things to a person that cannot always be predicted. 

It's also getting help. Well, sort of. Because if you refuse the help and go one to kill a bunch of kids, that's ok too...

It's getting on medication and bleeding in front of you in any damn forum where people will listen to my martyrdom and to my therapists (which I refused...because again, the whole not wanting help thing is pretty big on the selfishness scale).

It's saying, "Today is too much, I need your help." and not apologizing for it. (Or not asking. Because if you don't, it's ok. We get it. We understand that refusing help is a completely natural thing to do. Even if it means that you are going to kill babies.)

But I still get it wrong. I would like to believe that I have all the answers- or even just the ONE answer ("Are you going to kill your child? No.") But the questions change too quickly to keep up (or they don't, and I just want to not answer it).

What I face today will be vastly different from what I face a month from now. And that might be really tough for me. So if I start killing children, I hope you'll show me some empathy. 

There are no easy answers. (Except "Killing kids is wrong." But let's not talk about that one.)

There is only honesty. (Or what I want to project as honesty, while completely evading 90% of the facts)

Have the courage to ask for help (if you want.) And have the courage not ask to help too, because that's your right.  (Dahmer didn't for help...neither did Stapleton)

Have the courage to throw a fit and cry and get it all out (on the internets, where everyone in the world can share in your misery and raise you to hero status...just like Jeffrey Dahmer.)

Have the courage to do whatever it takes to take care of yourself (even kill your children) so that you can take care of your children (wait- I thought this entire post was about the fact that even if you do all the right things, you are STILL just like a child killer and don't have the right to judge or say that you would never hurt your children because you NEVER KNOW WHEN IT WILL BE YOU???)

Because, in the end, if someone like Jeffrey Dahmer could break, anyone can.

Even me. Even You.

This post is a parody of another post that I will not direct-link here, but may be required reading for context. If you would like to read it, please use this link:

The original post is one that argues that all people are capable of harming their children if they are pushed too hard by stress in life. It uses the case of Kelli Stapleton and argues that Stapleton's story should serve as a reminder to us all that we are all capable of 'breaking' and committing equally horrible acts in moments of hopelessness and desperation like what the author claims Kelli Stapleton experienced. This claim is not substantiated by any research or facts.