Dear Me

Dear Me,

You've written a lot of love letters before. Letters to your kiddos, letters to your hubby, letters to your friends...you love to share your love with the world.

But here's the deal. You never write to yourself.

You never tell yourself that you're proud of who you are and of what you've become.

You never take the time to step back away from your world and appreciate the beauty that is in it.

You don't take enough time to love yourself.

So today, for just a few moments, I am asking you to stop.

Close your eyes.

Breathe in your accomplishments.

A wonderful husband.

Two beautiful children.

A happy home, filled with family, friends, laughter and love.

A fulfilling job for the 'now', and a career that awaits for the 'then'.

Passion for your world and for those who live in it.

I know that you are filled with gratitude every day for what you have been given.

But today, just today, allow yourself to feel pride for what you have built.

It's a good life, Mama.

You're doing a great job.

Love, You.

This is what "accomplishment" looks like.

Sammie Speaks

The Unschooled Autist

*Wow, the feedback on this has been amazing. I had no idea that school was such a sensitive and difficult time for so many of my close friends and family members. Please know that I respect your individual choices when it comes to how to educate your children, as long as they are rooted in love and acceptance. <3*

I've always been a fan of structured schooling.

I was one of those kids who did really well academically, with very little effort. I was able to sit still during class, was a good listener (when I wasn't talking), and was self-driven enough to really apply myself when needed.

I flew through most of my courses, except anything having to do with Math, largely because of an undiagnosed learning condition (Discalculia) which I would only discover years later.

But for the most part, I was the kind of kid that the school system is built for.

I remember watching my peers struggle, never fully understand why they couldn't just adapt. Why did they have problems sitting still? Why did they struggle with active listening? Why couldn't they remember anything they read? It never occurred to me that my peers weren't only struggling with the actual information being presented, but that they were actually struggling with HOW it was being presented. I was too young to understand learning styles and how early childhood brains take in information. I was too young to know how completely counter-intuitive the entire school system is.

However, as I got older and grew through my years of study and work in childcare, I began to truly understand that- in many ways- the system itself is broken. It was designed to accommodate the needs of a society (namely, the needs of the work force), but not necessarily ideally suited to how children learn.

Kids like me- those who flourished in the very routined and structured environment of a school- we were the anomaly. Most kids got through, but they did not thrive. They simply survived.

School is, for many of our children, a significant obstacle to their ability to learn.

It wasn't until I became a parent that I was introduced to the concept of radical "unschooling," a philosophy which dictates that kids, left to their own devices and natural experience, will engage in active learning that fuels their desire to learn and their ability to adapt and problem solve. It is rooted in exploration and self-discovery, as opposed to rote-learning which relies on memory and methodology.

The idea of unschooling freaked me out. Seriously. Not only are you not sending your kids to school...you aren't actually giving them a curriculum at all?? That can't be right???

I watched as my friends engaged in this very free parenting approach and it took everything in my power to check my judgment and just observe. These were brilliant parents- women and men that I really respected. And they were rejecting a social norm that I had always assume just "was." There must be something to this, I thought, or these people that I really respect wouldn't be choosing this non-traditional lifestyle.

But still, it freaked me out.

And to be honest with you, it still does freak me out a little bit. I think that there is an awful lot about school that is necessary to functioning in a society, including but not limited to being exposed to learning methods that are not necessarily conducive to your own learning style. Beyond socialization, school encompasses an arrangement of social constructs that translate directly to how most work situations are based. There is a "boss" (Principal), managers (teachers), peers (students) to whom you are compared and contrasted. You are rewarded for excelling (grades/scores/praise), and you are admonished for failing to adapt to the situation at hand (grades/scores/reprimands). You are forced into a cohort of people who are your age, but who otherwise may have very little in common with you and, therefore, you have no choice but to learn to adapt to the different values, cultures, and social standards/norms that surround you.

It's a sink or swim environment.

It's not pretty. And it's definitely not "child friendly."
But in many ways, it is a miniature version of how 'real' life works, at least in a North American traditional model.

These were the principles that guided my decision to place Sam into a preschool designed for "early intervention" of his ASD challenges. And I have not regretted this decision at all.  It is a difficult environment for him to learn in, and he requires (and has the right to) a variety of accommodations to make it work for him. But, he is also forced to learn how to be more flexible and more adaptable to situations that can not always be accommodated 100%. There are days where he has to go outside, even if the sun is too bright. We offer hats and sunglasses. But not going outside is not a choice, because in life you don't always have the option of just opting out.

You can call it 'tough love'. I call it 'the facts of life'.

So, four or five days a week, Sam goes to school for 3 hours a day, and during that time is thrust into a world that is very difficult for him to adapt and adjust to. He is doing remarkably well. He is succeeding beyond my wildest hopes. But he is not thriving. And he likely never will "thrive" in this type of environment.

And I am not expecting him to.

What I have learned of Sam in his almost-four short years on this planet, is that he is unquestionably an "exploration" based learner. He likes to test things out, engage in trial and error, see objects and problems from absolutely every angle. He likes to make toys play in a variety of ways- not only those for which they were designed. He likes to be engaged in things that interest him, not in activities that are dictated to him.

My kid loves to be "unschooled."

That is where he thrives.

And for that reason, I've taken a hard and firm approach with him for the hours that he is not in school:

We will not create a learning environment in our home in which our son can not thrive. 
We will encourage him to learn and grow in ways that are suited to his learning style and personality.
We will respect that school is where he goes to learn to adapt, but home is where he goes to learn to become a fuller and richer human being. 
We will respect his right to play, to exploration, to discovery. 
We will respect his right to quiet, to privacy, to peace of mind. 
We will respect his needs to turn off the lights, block out the sounds, and lose himself in his own mind.

In short, we will not turn our home into a classroom.

Classrooms are for school, not home.

This seems simple enough, right? Except that it's not. Because when your child is Autistic, the pressure is on to get them as much "early intervention" as humanly possible while their brains are still young and plastic. After all, research tells us that intervention is the best way to ensure that they are able to manage, or even eliminate, their symptoms.

Intervention is the only "cure" we have for Autism. It's the only way we know how to help kids become "normal".

So we are encouraged, as parents, to inundate our kids with learning.

Speech therapy.
Occupational therapy.
Sensory Integration Therapy.
Physical therapy.
Behavioural therapy.
Social skills therapy.
Psychologist appointments.

The list goes on and on...

We are told that the more of these active services we access, the more our children have a chance at a healthy, happy life.

And maybe that's true.

For some kids.

But I have a hard time buying that it's true for my kid. Everything I know about him says that he learns best in situations where he is supported in his own discovery, not in an instruction-based setting.

So, aside from the 3 hours he spends at school, Sam's life is pretty much 'unschooled'.

We have never, outside of the school system, worked with any professionals on Sam's skills development.

All of his learning is rooted in our daily interactions, in a natural environment, that plays off what he loves.

His sensory diet is one that I designed, based on observing the activities that he loves and the ones that he seems resistant to. But even this "diet" is completely self-driven. Sam has access to a variety of sensory activities around the house that he can choose to engage in whenever he wants, including water play, swinging, fidgets, lights and sensory boards, and "nests".  He even has his own room that was completely designed to be self-sufficient for him: he controls the lights, the furniture, what toys or objects are allowed in or out at any given time.

We encourage Sam to read and he does love books. We have made available a variety of magnets and cut outs of the alphabet, and every so often he surprises us by spelling out a word or two out of nowhere.

We encourage Sam to talk, but we do this by talking and singing to him. We do not force him to make verbal (or even non-verbal) requests for things, though we are finding more and more that he is choosing to do so.

We do not force Sam to engage in social interactions. If he wants to play with me or with someone else, he will join us in our space and we will play together. But there are some days where he would rather just play by himself in his playroom...and that's ok by me too.

And while we are investigating adding professional, out of school practitioners to his team, even these will be very Sam driven and focused on exploration and self-discovery.

There are many kids who can learn through ABA at a table. But my kid isn't one of them.

You see, the one thing that I know is true for all kids is that they learn differently. There is no "one size fits all" curriculum that you can hand them and say "there you go! Now you are able to function as an adult." This is as true for Allistic kiddos as it is for Autistic ones. So all traditional models of schooling, while they serve many good purposes, fail to respect the individual's ability to learn and grow in their own time and on their own terms.

I don't want my son to succeed at being like everyone else.

I want him to succeed at being who he is; who he was born to be.

And the only person who can help him learn that is himself.

So while it may seem like we are very hands-off or unconcerned with his development to some (and yes, the amount of criticism I field for my parenting style is incredible...), the truth is that my son is learning every single day.

Words are appearing.

Skills are being discovered.

Social interactions are increasing.

His self-esteem has never been higher.

But most importantly, he is happy. He is happier at home than he is anywhere else in the world. He feels safe and respected here. He knows that this is a place that accept him for who he is, and where he doesn't need to worry about fitting into a mould.

Home is where he thrives.

And that makes my heart soar.

What Autism Parents Also Won't Tell You

There's an article circulating the interwebz this week that has my blood pressure up.

Written from the parent's perspective (as most articles on Autism usually are), it claims to dispell the secrets that "Autism Parents" are so cleverly keeping from the world: That we are scared, sad, and lonely.

These, the author claims, are "facts."

So here's the deal. I'm not going to attempt to refute that there isn't an element of truth to her comments, at least from her own experience. Some of these statements probably hit pretty close to home for many families with Autistic children.

But there are two thing that are nagging at me and that I have to get off my chest.

First: The article states that these are the things that Autism Parents won't tell you...the secrets we keep locked inside, hidden behind our strong facades.

I have two words for this:
Bull. Shit.

These "secrets", if you can call them that with a straight face, are the worst kept secrets I have ever seen.

Listen- I get it. There are some challenges with parenting an Autistic kiddo. I know. I've got one. (And yes, he probably is "like your kid"- severely affected, mostly non-verbal, prone to bolting...all that jazz. So please don't come at me with "functioning" nonsense.)

And yes, we have a community of active and amazing parents who are raising amazing Autistic children.  We share our joys. We share our laughter.  And we share our tears and struggles.

But the latter don't end there.

Take a look at just about every Autism awareness campaign ever launched. Are they just overflowing with happiness and joy?

No.

They are overflowing with fear, grief, martyrdom, and anger.

Kind of like this latest post.

From online news articles like this one, to countless blog posts saying the same thing, the Autism parenting community sends a very loud message, very clearly:

"Parenting my Autistic child sucks."

The other issue I have is with her misuse of the word "Fact."

These devastating life conditions that she claims are universal facts of all Autism Parenting experiences?

Well, here's the real secret: They aren't "facts" at all.

Here's a really closely kept secret of Autism parenting:

"Actually, it really doesn't really suck. Not for all of us at least..."

Autism parenting, like all parenting, has its highs and lows. Such is life. But there are some seriously sweet things about it.

Fact: Every milestone is that much greater.

Fact: Every connected moment is that much more powerful.

Fact: Every time your underestimated child shows you just how capable they really are, you are that much more proud and awestruck.

Disagree with me? Take issue with my use of the word "fact"?

Good.

You've proven my point.

Not every parent will have the same reaction to Autism. No one has the right to speak on "our" behalf, particularly not if they are going to reenforce stereotypes and myths that we KNOW are destructive to our children.

Is your parenting adventure sad and awful? Do you want to play martyr and get your fifteen minutes of fame by having the world feel your grief and pain?

If that's what turns your crank, have at it.

But tell your own damn story, and don't presume to think that you have any right to speak for mine.

Because I'll be outright bold here:

Parenting my Autistic kid is kind of awesome. It's totally amazing. He blows me away and 99% of the time our days are filled with the kind of fabulousness that would make Perez Hilton mighty proud.

And sometimes- just sometimes- parenting my Autistic kid is even easier than parenting my neurotypical one.

Sometimes, his strengths are exactly what I need to get through the day, and I find great comfort in the beautiful moments of silence that we share together. I escape into his world, and the quiet there soothes and rejuvenates me.

Is it perfect?  Nothing is.

But don't you dare tell the world that I am lonely. Don't you dare claim to speak of my experience as a matter of "fact".

Don't pretend you are dispelling myths when you are actually actively reenforcing them.

Don't throw my son, my family, under your martyristic bus.

That might be your reality.

But it sure as hell isn't mine.

And that, friends, is a fact.

Words, words, words

They are popping up where we least expect them.

"Apple"

"Yes"

"puppy"

And slowly, they are gaining context and intentionality.

Today, Jason offered Sam a waffle. Sam smiled and shook his head "no".

Sometimes, Sam likes to joke around with head shakes. Sometimes "no" actually means "yes, but I'm being silly."

So Jason asked him, again: "Sammie, do you want a waffle."

And with his little voice, sure and simple, Sam responded "No."

Verbally.

Not as a repetition. Not as an exploration of sound. Not as a passing sing-song play.

"No."

An affirmation of his wants and needs. The first of what I am becoming increasingly convinced will become a new way of communication.

A word, spoken with intention.

A window into his frame of mind.

Complicated

Sam has been saying tons of new things this week. It's been a veritable language explosion.

Maybe part of that has been brought on by his sister's discovery of sound and words.

Maybe he has just decided that he is now ready to focus on this skill.

Either way, it's pretty cool to hear his voice. It's sort of a tiny version of a man's voice...much lower than I ever would have imagined.  I think that somewhere, in my naive (and sometimes ignorant) mind, I always envisioned that when he started to use words his voice would match the 'developmental age' of early communication.

I thought he would sound more like a baby.

But he doesn't.

He sounds like an almost four year old boy.

...

...

...

Today, I heard him say his name for the first time.  It came out, loud and slightly slurred, in a momentous feat of verbalism: "SCH-AM!" "SCH-AM!"

My body frozen. My heart stopped.

My son said his name.

...

...

...

In his beautiful boy-soprano voice, my son said his name.

I closed my eyes to take it in, when suddenly I heard behind me: "ZAM!" "ZAM"

That was no boy's voice.

My mind must be playing tricks of me.

It was the baby voice of my dreams!

"ZAM!" "ZAM!"

...

...

She looks up at me, glowing. Radiant even. She knows what she's done.

She has said a new word. Her brother's name.

She is proud.

I am proud.

...

...

Her voice is just as I imagined it would be.

Just as I imagined his would be.

That voice, a reminder of the baby that I have.

And the baby that I have lost to time and age.

Soon, she won't be a baby any longer. She will be a girl.

And her voice will change.

Just like his did.

...

...

Happy.

Proud.

Sad.

Nostalgic.

Conflicted.

Convicted.

Confused.

How can it be that the human heart can feel so much all at the same time, and not explode?

Murder is murder.

Note: Before I get called a "bully" or a "vulture" (which are two of the kinder names I've been called by angry readers), please note that it is not "bullying" to have an opinion on an issue, even if if it differs from yours. It is also not bullying to discuss these issues openly, to advocate your differing point of view, to use harsh or even crass language or a strong tone. To learn more about what constitutes real bullying, please refer to your friends Wikipedia or Google. Using this term as inappropriately (and ironically) as some of you do actually demeans the very real bullying experiences that some of our ASD kids, and other marginalized populations, are facing every day. Please consider this in how you choose to respond to me and to others. 


In my last two posts (part 1 and part 2), I've begun to explore the issue of violence towards Autistic children.  As I explained, the factors leading to incidences of extreme violence generally involve complicit behaviours from all levels of society through. Parents, schools, the medical system, 'advocacy' groups can all contribute directly or indirectly to the type of dehumanization tactics which contribute to the belief that violence towards Autistics is justifiable and understandable.

I would like, in this post, to talk about a specific line of reasoning used in the tacit acceptance of violence towards Autistic children.  This is the line most frequently invoked by parents, both perpetrators and supporters, who claim justification to these incidences of criminal activity:

"We need to talk about why this happened. What happened to this child happened because of lack of supports for the parents of children with autism."

There are two distinct arguments made in the statement above: The first is that "why" this happened is not being adequately addressed. The second is that additional supports would have saved the child's life.

I would like to address both of these arguments as being false.

To do this, I'm going to use the very specific case study of Issy Stapleton and her mother, Kelli, who has been charged with the attempted murder of her daughter. You can read more about the history of their case here.

I understand that in doing so, I'm about to burn just about every bridge I could ever have with the "Autism Parenting Community." I understand that I am taking on a very heated topic as many people in the Autism Community knew and loved Kelli dearly. These same people are imploring us for the need to have the "tough" conversations about supports and the events that lead up to this. I am answering that call. Conversations are two way streets, and I suspect many will not like what I have to contribute to the dialogue. However, I hope that some will seize the occasion to engage in a genuine conversation. It should also be noted that all my quotes from Kelli have been taken, in full, with links to the original articles and dates of publishing. 

What makes Issy's case a unique one is that the mother in question was a prolific and beloved "Autism Mom" blogger. Her blog, The Status Woe, was a staple for many parents who are navigating the challenges that arise with parenting a child on the Autism Spectrum. Stapleton described herself (in "bullet point" format) as a talk show producer, humorist, public speaker, IMDB-credited producer, Molecular Biologist, Coach's wife, and Autism mother.

She did not describe herself as a person who would attempt to kill her daughter, largely because I suspect she never contemplated she would find herself capable of doing so. Or, at the very least, she did not do so publicly.

Before looking at some of Kelli's writing, I would like to offer up a definition for you to consider. Please take the time to really read and consider this term (emphasis is mine):


         PSYCHOLOGICAL ABUSE (http://www.vchreact.ca/read_psychological.htm)

Any act, including confinement, isolation, verbal assault, humiliation, intimidation, infantilization, or any other treatment which may diminish the sense of identity, dignity, and self-worth. This is sometimes called emotional abuse. Some researchers refer to it by formal terms such as "chronic verbal aggression". Psychological abuse can make the person feel "less of a person". It diminishes the person's sense of identity, dignity, and self-worth. Abused people often find that psychological or emotional abuse is the most hurtful form of abuse. 

Psychological abuse may make a person fearful or cause the person mental anguish. This may be done in several ways, including by:

• making the people uncertain about themselves and their abilities (lowering their self esteem),
• threatening some form of violence, or
• threatening to abandon or neglect the person.

I would like you to bear this definition in mind throughout this post.

I am going to begin with "WHY" this happened.

The answer is, in my estimation, as simple as it is tragic.  This happened because Kelli Stapleton, and the medical system that supported her, engaged in systematic child abuse that escalated to the point of attempted murder. That this abuse was validated and supported by the "system" does not negate the very real fact that the type of "treatment" received by Issy Stapleton at the hands of her medical professionals and mother fits the textbook definition of child abuse, specifically in terms emotional and psychological abuse

For those who know and support her, Kelli Stapleton's blog tells the story of a mother pushed to brink with desperation and fear, pushed to violence by a system that was determined to devastate her and her family, broken by years of chronic physical abuse… You can find countless articles and blog posts dedicated entirely to the argument that Kelli Stapleton, while technically responsible, was not really responsible for what happened...

But is this really the whole story? Does this, and the other stories like it, just boil down to a systemic problem with lack of supports?

Or is there an even more dangerous problem that we are failing to address? 

Kelli's blog offers fascinating insight into her world as an "Autism mother".  She describes in vivid detail the therapies and treatments options that she pursued with her daughter.  She chronicles Issy's life and treatment plan, and speaks in great detail as to the challenges that can face parents of a child with a disability.  She put up pictures with charts and graphs depicting her child's medical history. She uploaded videos to show the world just how aggressive and difficult her life with Issy could be. She confessed that parenting an Autistic child was the opposite of parenting a neurotypical one, explaining that:

"If she is sad about something I should NOT go and try to comfort her.  She gets no comfort from it and I’ll likely get hit.

If she wants something I should not give it to her.   She has to earn everything.

If she is sitting quietly for long periods of time I should not try to talk to her.  She’ll get mad and hit me.  I remember feeling that way about my mom and I’m NOT a child with autism!  Hahaha!  Soooooo totally normal?

If I have to tell her “no” and I feel badly about it.  It does no good to explain.  Once we wanted to go to the fair.  We got there and it was closed.  I said how sorry I was and it was a bummer.  I used my (sincere) but sad voice and got hit.  Just saying “no” and moving on is better.

It’s generally better to avoid her.   I need to step in when I know I’m going to be successful and not get hit.  We have 14 years to re-shape.

Going up to her at any given time and hugging her and telling her I love her. Yea, that doesn’t thrill her.  So am I doing it for me?  Or her?  I don’t want to spark an aggression so I’ll just love her from afar! "

(Kelli Stapleton, "Some Personal Thoughts On My Training", The Status Woe,  August 27, 2013)

In this passage, Stapleton describes how she has been taught to:

• Withhold affection and comfort 
• Withhold communication and age/cognitively appropriate levels of self-determination
• Actively isolate and distance herself physically and emotionally from her child 
• Avoid physical contact and any outward signs of love and affection.

This, of course, on top of the fact that Issy's school was a residential one, where she saw her mother only once a week. 

In short, Kelli Stapleton was given the medical advice of completely severing any outward representation of an emotional connection to her child. She could love her from afar, in her heart and mind, but was discouraged from showing that love in any tangible and meaningful way which, unless Issy is a psychic, would be the only ways in which her daughter would be able to receive and understand it. 

The next quote describes her first parent training session with Issy's behavioural team. Issy was becoming increasingly agitated and aggressive throughout the session:

They are true professionals.  Carly kept asking if I was all right.  I was.  She was bleeding and her adrenaline was kicking in.  As professional as she is, I can tell she isn’t used to getting attacked.  I feel so horrible and responsible for Issy’s behavior.

I just want to mention that they never got mad at Issy.  Never yelled or screamed at her.  Just reminded her that she could earn tokens for ipad time when she had quit hands and feet.    Did I mention that they are superheroes?!

Kelli Stapleton, "Kelli (mom) implements the behavior plan. Success does not ensue", The Status Woe, June 11, 2013.

Another quote describing her daughter's physical appearance as making her "hard to love." 

Well, this isn’t the first time I’ve found myself on the wrong side of popular.  I have a daughter firmly planted in autism’s “hard to love club”.

She is well beyond “cute toddler” stage; where she had bright blue eyes, ringlet curls, and deep sweet dimples.  And her behaviors could be passed off as “age appropriate”.

She is a teenager now.

She is overweight.  It isn’t her fault; we had her on medications that caused her to gain weight.  A lot of weight.   But there isn’t anything endearing about an overweight teenager rampaging through a house or classroom.

She could care less about hygiene.   It’s not uncommon to see her with wildly unruly hair, food in her teeth, stains on her shirt, or even smelling of body odor.   Of course, her dad and I do what we can, but we aren’t with her every minute.  At school, she may get food on her face.  Sometimes it gets wiped off, sometimes not.

Kelli Stapleton, "Autism's Hard to Love Club", The Status Woe, April 5, 2013 

Unhygienic. Uncombed, unkept, smelly...

Are these acceptable ways to speak of a child? Of course not. We have countless books and even more academic research that very clearly indicates that these types of treatments would be unquestionably emotionally and psychologically damaging.   In fact, research is now showing that social deprivation (including affection deprivation) and negative reenforcement can be so damaging that it can prevent proper brain development in young children.

But, we aren't talking about "a child". We are talking about a child With AUTISM, that evil beast that has come to steal your child's soul away.

So, let us revisit that earlier definition of Psychological Abuse:

"Any act, including confinement, isolation, verbal assault, humiliation, intimidation, infantilization, or any other treatment which may diminish the sense of identity, dignity, and self-worth."

• Confinement- CHECK.
• Isolation- CHECK.
• Humiliation- CHECK.
• Intimidation- CHECK.
• Infantilization- CHECK.
• Treatment that may diminish the sense of identity, dignity and self worth- CHECK. 

Allow this to sink in for a moment or two….Is there really any other way to describe the treatment that Issy was receiving than to call it systematic and chronic psychological abuse?

That it was part of her "behaviour plan", and executed by "superhero" medical professionals, is simply an indication of the bigger problem at play.  Their strategy was clear: Break Autism, by breaking Issy's spirit. 

At the beginning of this post, I said I was going to discuss "supports"- or at the very least, the cry for supports coming from desperate parents everywhere.

Do Autistic children and adults need supports? Without a doubt.
Do families with Autistic children need supports? Unquestionably.
Do schools and communities need support to provide the accommodation necessary to meet the needs of all children, regardless of ability level? Absolutely.

All children should be provided with the tools they need to thrive and have a fabulous quality of life.

I do not know a family with an Autistic child that does not need additional supports and tools in place to ensure that the needs of every member are met.

For my son, those tools include some work with a speech therapist, some work with an occupational therapist, a specialized early-learning program where he can interact with other peers with complex needs. These are the tools delivered by specialists, who are highly trained in their field of work.

But, like all tools, every one carries a risk. So the team is driven by my husband and I, and we are extremely careful in how we apply therapy into our child's life. Our team members have received clear instructions on language, philosophy, and how we want Autism to be discussed. We even formalized a document, presented it to the team, and had it included in his IPP. (Read about that here: On Setting A Tone…)

So, no- I am not against supports. Supports are a good thing. All children- all PEOPLE- should have the supports they need to thrive in the world.

But what kind of supports do we need? And what are the goals of those supports? And whom exactly should the supports serve? These questions seem to never really be fully probed by the parent-advocates.

And yet, these are the tough questions we need to ask in the wake of what happened to Issy Stapleton.

Because I can tell you this much: Kelli Stapleton's idea of supports, as defined by her writing, sure doesn't jive with mine...

We need to begin a dialogue about these questions.  We need to ask ourselves, as parent, what is it that we mean by supports? Do we mean residential school for every Autistic child? Or do we mean a model where professionals work with parents to teach them the skills and accommodations that their family needs to help every member thrive?

And, perhaps most importantly: Would any level of "support" have prevented the assault against Issy Stapleton?

The problem with the term "support" is that it is dangerously broad- so much so that there is no way it can actually keep up with parents' growing expectations.

In Alberta, Canada, where I live, the list of government-funded supports is nothing short of remarkable.

We are provided with up to three years of Program Unit Funding (PUF) which provide for fully funded (including bussing) early education services for every child with a disability.

We have Family Supports for Children with Disabilities (FSCD) which pay for key services like Respite Care, Family and Child counselling, assistance with costs relating to the disability (clothing, footwear, etc), assistance with costs of medical/therapeutic treatment (parking, mileage, meals for out of town appointments, etc), and Specialized Services provided by a multi-disciplinary team of Speech and Language Pathologists, Occupational Therapists, Physical Therapists and Psychologists to help work with severely challenged children on every day life skills.

These are provided free or mostly free to families with children requiring systemic supports.

Yeah- kind of breaks the mind, doesn't it….I understand if it makes you want to move here...a lot of Autism families have, in fact...

And yet, even here- in the haven of all things Autism- this happened. An Autistic child, killed for no reason other than being Autistic.

And again, that ominous word "supports" is used as a quasi-justification for the murder of an innocent child.

So when it comes to the plea for more "support" as justification for the attempted murder of a child, I call bullshit.

The fact of the matter is that no amount of speech therapy, physical therapy, occupational therapy, or even psychological therapy would not have helped kept Issy Stapleton safe.

There are no "supports" out there that could have protected her.

Because those aren't the kind of supports that Kelli Stapleton was looking for when it came to her daughter.  Those kinds of supports are there to help families work through their challenges and find real, every day coping mechanisms that allow them to thrive. They are there to prop up those who understand that the weight of the responsibility for caring for their children is (and should be) on their shoulders. They are there to serve the needs of the child, not only the needs of the parents.

But they do not work towards eradicating Autism.

They do not claim to have a "cure."

They are not promoting that they can help you "recover" your child.

They are not there to make promises to the parents about how much easier things are going to be.  In fact, our services are fundamentally principled on the idea that all therapies should be parent driven.

The government is not going to "fix" what is "broken" with your child, because there is nothing to fix.

Your child isn't broken. 

Yes, there are very real conversations that need to take place about family supports. Sadly, these are being invoked as red herring arguments, conceived to detract us from the very real situation at hand.

What happened to Issy Stapleton, and countless children like her, isn't about a lack of supports.

No amount of "support" will convince a parent that their child is a human being who has the right to live a rich and fulfilled life.

It is about a society's obsession with "curing" and "fixing" and "recovering"- at any cost, including compromising the child's health and safety.

It is about a medical system that renounces neurological differences in the same way that it used to renounce gender differences, or claim that race and sex dictated intelligence and reason.

It is about a justice system that shows more compassion and empathy towards adults who are in control of their actions than children who are not.

It is about a mother who made the conscious decision to attempt to take the life of her child as well as her own, because her child didn't deserve to live and she didn't want to deal with the consequences of killing her.

It is about a child who had no other recourse, no other option, but to resort to violence.

It is about "self-defense" being spun into "aggression."

It is about blaming the victim.

It is about this child. And this child. And this child. And this child. And this child.

It is about the systemic process of dehumanizing any child who is different, to the point where the very value of their lives is called into question at every social level.

It is about murder.

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NOTE: If you, at any time, feel that you are incapable of caring for your children and/or are at risk of harming them or any other human being, call 911. Get help. Immediately.