Tuesday, January 28, 2014

Your shoes

Dear Kassiane,

You don't know me, but through the craziness of the internet, I've come to know you a little bit. We have mutual friends, and I've read many of your self-advocacy posts with increasing interest. I've just finished reading your post, "Here, Try On Some Of My Shoes", on the Thinking Person's Guide To Autism Blog. Well, to say that I *just* finished it would be a lie. I finished it an hour ago, and have been processing your words ever since. Despite us being strangers, I felt compelled to write to you, to engage in a dialogue on your experiences, on the very real risks to Autistic children and adults that you highlight, on my experiences as an Autism parent and as an extremely supportive member of the Autistic movement, and on the one thing that draws us all together: our humanity.

I hope that is ok.

I want to start by thanking you.

Truly and sincerely.

Thank you for sharing your story, for 'loaning me your shoes', and for speaking so honestly and rawly about the very real abuses happening to some of our Autistic children.  Your story is so important, not only in the Autistic community, but in our society as a whole.

There is a very real epidemic out there- one that has permeated our world since the dawn of time and that we are far too slow to address: the ongoing onslaught of abuses happening to children at the hands of their parents, caregivers, and loved ones. These atrocities are happening to our Autistic children. They are happening to our children with other complex needs. They are happening to our neurotypical children. They are happening to children in wealthy homes. They are happening to children in poverty.

Every day, every where we look, children are being abused.

And there is absolutely no topic I take more seriously or rally against with more ferociousness.

That your abuses happened to you because of you neurology is a doubly tragic. Somehow the world seems still intent on justifying the wrongs done to our "disabled" population, even more so than it wants to justify the crimes against neurotypical children. And beyond that, this population is- all too often- victimized long after their days of childhood have passed.

Your shoes will likely always be beaten, battered, and muddied.

Which brings me to my next point:

Kassiane, I am sorry. I am sorry that your parents failed you. I am sorry that the school system, the child welfare system, and the world as a whole failed you.  I am sorry that I was just a baby when you were born, and that I would have been powerless to help you even if I had been there. I am sorry that you are still under attack by a world that doesn't understand you, and hates what it can't understand.

I am sorry that, even without intending it, I am still a potential threat and a potential danger to you. I understand that, by virtue of my own neurotypicality, I will always operate from a removed, privileged position. And I am sorry that not everyone in my shoes recognizes that.

And now for my final point: A promise.

I promise to not let what happened to you happen to my child.

I promise to fight for human rights for him and for all Autistic children everywhere.

I promise to always be committed to being part of the change that you are so desperately seeking.

I promise to never strike either of my children, and will always strive to speak to them with love and respect.

I promise to read as many self-advocate posts and blogs that I can to better try to understand the world that you and my son are living in.

I promise to celebrate his neurodiversity, and to insist that his doctors and teachers only use terms and descriptions that are positive, empowering, and reflective of his identity as an Autistic child.

I understand that most "Autism Moms" will think I am crazy. I know that my husband and I are still anomalies in the world of special needs parenting, and that there is still tremendous work to be done to get everyone to a place- not of 'acceptance', 'tolerance' or 'inclusion'- but to a place where we recognize that our differences make us stronger, better, and more adaptable as a species.

That we should be celebrated for who we are, not 'despite' our uniqueness, but because of it.

Please know that I am on your side.

Please know that I have bookmarked your post and return to it every time I feel that things are tough. Because every so often I need to be reminded that Autism isn't something that happened to me. It is something that I chose when I decided to become a parent, knowing that my child's future was out of my control. I may not have understood that then, but I do now.

I told my baby that I would love him and fight for him no matter what.

Thank you for reminding me why that is so important.

I wish I could hug little girl you. I wish I could make her feel better. Most of all, I wish I didn't have to.

Sammie's mom.

Friday, January 17, 2014

Why I hate "Welcome to Holland"

A well meaning friend recently sent me this essay.  It is called "Welcome to Holland", and was written in 1987 by Emily Perl Kingsley, a special needs parent who describes her parenting journey as being like getting very excited for a vacation to Italy (parenting expectations) only to find that she has been landed (permanently) in the quaint country of Holland (reality of special needs parenting).  It's very poignantly written, and definitely tells a story of how beautiful an adventure special needs parenting can be.

And yet, I hate it.

I really do.

And people keep sending it to me. "Read this!", they say excitedly, as most "neurotypical people" do. "It's so beautiful! It's exactly like what you are living. You love being a parent- it's just not what you expected!"

And I smile, and nod, and avert my eyes. They are so well-intentioned. I certainly don't want to hurt them or to discourage them from trying to find meaningful ways to relate to me and to our family.

But deep down inside, I want to punch someone in the throat beat the walls with a bouquet of proverbial Holland tulips.

Why, you ask?

Well, I can guarantee you this much: it's not because I hate Holland.
I also don't hate Italy. I've never been to either place, and I'm sure I'd love to visit them both.

And it's not because there isn't a certain element of accuracy to the idea that my reality doesn't match up with my expectations, thus sending me into a very unexpected place.

It's that, like it or not, every parent winds up in ITALY.

Yup, I said it. I'm about to blow this "parenting expectations" myth right out of the water.

You see, I would be willing to place a bet- a pretty substantial one at that- that, if you are a parent, your expectations of parenthood didn't quite match up to your reality.

Each and every one of us finds ourselves on this parenting journey a little lost, a little confused, a little disillusioned.  We each come into this game thinking that we know what the rest of our lives are going to look like.

From pregnancy to newborn, childhood, graduation, marriage, house, dog, cat, kids, grandkids...we have this beautiful picture of the baby that we are bringing into the world and how it will fit into our lives.

Some of us may even have gone so far as to dream of what they would look like. What career they would have. What hobbies they would love.

We fill our minds with countless dreams and expectations and anticipations...and it is all very happy and peaceful and joyous...

And then, bam- enter reality.

It happens to us all in different ways.

Reality hit me hard when the doctors told me that my 19 week old fetus would probably not live to term and would try to take me down with it.

Reality hit my husband hard when he got home from the hospital, looked at his newborn son and said "So...what do we do now?"

Reality hit my best friend when she was first pregnant and told that she was carrying a boy, despite being desperate to have a little girl. Reality hit her again when, just as she had gotten used to the idea of having a son, a little girl was born instead.

Reality hits the family of a child with severe egg or nut allergies.

Reality hits the family of the child who is gay.

Reality hits the family of the child who doesn't want to take over the family business, and instead dreams of being a ballet dancer.

Reality hits the mother who expected her son to sing as beautifully as she does, only to learn that he is completely tone deaf.

Reality hits the uncle who thought that autism meant "like that kid in Touch"

Reality hits the father who's son just can't stand still, no matter how many times he is spanked.

Reality hits the grandparents whose child has just been in a car crash, and may not live to see the next day.

It happens at varying times and in varying degrees, but one thing is certain: Reality will hit you, like a ton of bricks.

Nothing about parenting will be anything like what you expected.

The reason for this is extremely simple: Your expectations are about you. They aren't about your child. So when this little person enters into your world, with their own personality, opinion, experiences, beliefs, skills, talents, weaknesses and strengths, it breaks your brain.

Who they are and who they are to become actually has very little to do with what you expect from them.

It has to do with who they are, and how you guide them towards self-discovery.

So, in a way, we all wind up in "Holland"- a foreign country with absolutely no idea how to navigate it....

And I could leave it there, except for one thing.

We don't wind up in Holland. Being in Holland would imply that we were not involved in the final destination.  But we were. Special needs parents and non-special needs parents alike. We all chose our destination: Parenthood.

We CHOSE to go there.

You see, parenting is a choice. And it's one that is riddled with uncertainty, responsibility and- sometimes- heartache. But it is a journey we chose to embark upon.

None of knew what kind of kids we'd get. None of us can say for certain that our kids will do a, b, or c.  Hell, none of us can know for certain that they won't drown in a pool.
Or lose their legs in a crash.
Or spend a year or more in the hospital, recovering from a brain injury.

None of us know anything about the final destination. We are all flying blind.

So, instead of Holland, I posit this: We all wound up in Italy. 

The story goes like this:
What is special needs parenting? Well, it's pretty much like every other kind of parenting. Yes, we have very unique struggles, and yes there are definitely challenges, but there are struggles and challenges in everyone's lives and who am I to say that they are better or worse than yours?  
It's kind of like planning to go to Italy. You read all the books, you pick out all the restaurants you want to eat at, you dream all the romantic strolls you'll take. But then you get there and your trip looks nothing like what you thought it would look like. Some of us get lost trying to find our hotels, and wind up discovering a beautiful bed and breakfast to stay at instead.  Others lose our luggage, and spend the first two days at the airport, using the sink as a sponge bath. Others realize that being in a country where you do not speak the language is very scary and intimidating, and spend the whole time in their room, afraid to leave. Others still, get stormy weather the entire time- so instead of laying around on beaches and enjoying wine on patios, they discover the history around them in museums, and halls, and opera houses.  
The truth is, this trip is nothing like what you planned it to be...even if everything goes exactly as planned! Because you can't predict how something will feel. You can't predict how something will smell. You can't predict what will captivate you, or terrify you. All you can do learn as much as you can, before you leave and when you land, and focus on being adaptable and flexible. 
Whether or not you enjoy the trip is entirely up to you. 
So here we are, all in Italy.  But we're all having very different vacations, because we're very different people, raising very different children.

Is life with my Autistic child quite the same as what I thought parenting would be? Nope- it sure isn't.

But neither is life with my neurotypical daughter. And neither is life with my husband. And neither is my life, in and of itself.

It's all one crazy, wild ride, every day defying my expectations. The only thing that has actually gone exactly as I expected was this: I wanted to be a parent. And now I am one.

Italy. Not Holland.

Because I don't know about you, but the slower, tulip-picking pace of Holland has very little to do with my hyper crazy days.

And I wouldn't have it any other way.

Ciao, friends. Enjoy your stay while you're here.

Thursday, January 16, 2014

Why I refer to my son as "Autistic"

"You should use person first language. Calling someone Autistic is demeaning."

It never ceases to amaze me how often this phrase comes up. There is hardly a conversation about Autism that goes by without someone attempting to correct the use of the word "Autistic" and replace it with "person who has Autism".  

This shouldn't really be that surprising. When it comes to discussing disabilities, person first language has been the strongly enforced social standard for years. Those of us who consistently use the term "Autistic" to describe our children are generally chastised and instructed that our language is disrespectful. 

What is truly shocking though is that often these politically-correct admonishments are even used against Autistic people themselves. Generally, those making the corrections do not, themselves, have autism. 

You gotta love when someone else tells you who and what you are...

I first encountered this debate when I started reading a lot of blogs written by autistic self-advocates.  These are the adults who, through various means including speech, writing, and electronic communication, have managed to find ways to communicate their thoughts in ways that we "neurotypical" people can understand.  The internet has created a forum for them to be heard. Where once it was believed that Autism was a silent condition, all of a sudden the world has erupted with the strong voices of Autistics of all ages, screaming in unison: "Listen to me!"

And so I started to listen


Because, if I truly believe that Sam has thoughts, feelings and opinions of his own (which I do), I can not negate the fact that all others like him do as well. And I believe that all humans should be listened to and respected, particularly on matters that concern them directly. 

As I reflected on their voices, most of which are adamant about Autism being a core part of their identity, I was reminded of a situation I once found myself in...

It was back in University, about 10 years ago. We were in political science class, discussing feminism. Being proud of the fact that I believe in sexual and gender equality, I proudly refer to myself as a feminist and was shocked to find many women hesitant to use the term. We engaged in a healthy, passionate discussion about the "why" and "why not" of the situation, and I was blown away by the diversity of opinion on the matter. 

But I was also troubled;  throughout the conversation, many of the male students in the class were eager to share their opinion on the matter as well. In fact, they seemed even more adamant to do so than the women in the class were. They spoke over us, loudly and- in many cases- mockingly. The told us that we were wrong. That they were right. They told us what we should think...

Of course, I wanted to hear what they had to say, as I do believe that the male voice is an important contribution to all discussions surrounding sexual equality- but the phrasing left a lot to be desired.  Over and over, phrases like "Feminists think..." or "All women believe..." or "Women must..." or "Feminists do..." resounded, pounding in my head like crashing cymbals.  

I couldn't help myself from wondering: Who are you to tell me what women think? Who are you to define what feminism means to me? Who are you to tell me what I can and can't do, what is part of my essence as a female? You are not a woman. You do not know what the female experience is like. 

In the back of the class, a fellow student who seldom ever spoke raised his hand.  He said quietly: "I have no idea what feminism should be or shouldn't be. I think that should be up to women to decide. After all, it's their identity we're talking about. Not ours."

Aha! Yes! That was it! That was exactly what I was thinking and feeling, but unable to put into words! And amazingly enough, it came from a man. 

I realized that day that I can not speak to the lived experience of another individual or group. I do not have the capacity to say "I know what it means to be homosexual" regardless of how many homosexual friends I have. And so when my homosexual friend asked me to use the term "gay" (because the formality of "homosexual" made him feel like I was afraid of using the term gay), I acquiesced, and have generally used the term "gay" since. 

Likewise, when observing the Idle No More movement, I understood that- while I can be a vocal supporter- this was not my cause to champion. I am not a member of the Aboriginal culture. I can not speak for them; I can only speak of them. And one should never speak of someone else when they are able to speak for themselves. 

So now, 10 years later, I find myself faced with the same situation. Only, in this case, the parents are the men in the room, desperately trying to be heard over the voices of the self-advocates. 

We know our children. We know our experience as parents. We can speak to that experience, and offer extremely valuable insight on how society can progress towards acceptance and accommodations. 

The voices of parents are important.

But they can not be, and should not ever be, louder than the voices of the Autistics, particularly not on matter of identity and lived experience.  Because, while they may not know my son, they have a much better understanding of what it is like to be him than I ever will. And, as he is still very young and still mostly non-verbal, they are the closest thing he has to a "voice" on the matter.

They are speaking. They are asking us to stop talking and to listen to them. 

They have chosen the word "Autistic" to define themselves. 

Choosing to do otherwise would be to put my lived experienced and beliefs over theirs. It would mean trying to speak louder than their voices. It would mean that I believe that my vicarious experience of what it means to have autism is more important than their direct experience.

And I just can't be "that" person. 

So I will call my son "Autistic", until he himself asks me to do otherwise. 

Self Advocates: Please keep speaking. I am listening. 

Tuesday, January 7, 2014

Autism: "Love the sinner, hate the sin" (or 'On Identity')

EDITED: Please note that one of the articles that I had originally cited regarding Pope Francis and his stance on Gay Marriage was not a valid source. I have since removed it from this post. Many thanks to the reader for catching it, and apologies for my lack of diligence.

While this blog is about our family's journey with autism, and not religion, the two will be meeting in this post. I understand that some of the views I express here might make some of you uncomfortable, and while that is not my intention, I will not apologize for it either. Hard topics almost always make us uncomfortable.  They even make us angry. And that's healthy. Through confrontation comes resolution. 

Being raised Roman Catholic, I was brought up with a rather rigid worldview on what qualifies as "acceptable moral behaviour". These moral imperatives seemed very black and white to me as a young child, mostly because the topics being covered were relatively basic: Don't lie. Don't steal. Don't be mean to others. Try to be a good person. Be nice to your parents and listen to them. For the most part, these seemed like the building blocks to decent human behaviour.

As I aged, the topics became increasingly complex and I learned very quickly that there is a lot more gray in the world of morality than I had previously believed. I knew that many of the church's teachings contradicted what seemed to be to be basic common sense, and I quickly found a peaceful understanding within myself of the difference between the human rules of the church and the divine imperatives of the Church. I came to the conclusion that the 'golden rule' should trump all others: "Love your God above all others, and love each other as you want to be loved yourself." I chose to focus my faith on Christ's instruction that it is not my place to judge the actions or decisions of others, but rather to hold myself to as high a standard of morality as I possibly can, and to continuously seek to better myself in any way possible.

For that reason, when it came to the very difficult theological topic of homosexuality, I was never fully able to accept the cliche of "Love the sinner, hate the sin." Having made close friends who were homosexual, it struck me as impossible to separate the "sinner" from the "sin".

When one is born with certain traits, it is impossible to separate them from these traits. 

They were born this way.

Just as I was not.

Their sexual orientation is as much a part of who they are as mine is of me. As we are all the culmination of the experiences and decisions that we have made, it behoved me to simply "love the human" and leave the rest up to God.

In many ways, this made me an outcast in my faith (though I am intrigued and excited to finally have a Pope that is returning to the compassionate roots of our faith, and appears much more accepting of alternative lifestyles: see here and here and here.)

But being an outcast never really bothered me- frankly, I am more concerned with being a good person than a good Catholic. If that rubs some the wrong way, so be it.

Last week, I read an article by Pastor Micah J. Murray which reiterated my personal views on this topic beautifully. In one of the most eloquently simple phrases I have read on the topic, he says "I’m not going to define anyone by their sin. That’s not my identity. It’s not yours." He's right. It's refreshing to see views like this emerging more and more within the Christian faith. Honestly, it's invigorating. 

So what does this all have to do with autism? 


Lately, I've been reading a lot of talk regarding the "possible existence" of an "Autistic Identity" and whether or not we should be listening to the voices of the Autistic self-advocates who are imploring us for acceptance. From heated debates on whether or not we should be funding research for "cures", to whether we should utilize "person first" or "identity first" descriptors, the Autism community seems to spend as much time fighting within itself as it does fighting for awareness. I have many feelings about this: sadness, frustration, hopelessness...but the dominant feeling that overwhelms me is, quite honestly, confusion. 

I mean, of course autism is an identity? How is this even a question?

Let's first define "identity":

From: http://www.thefreedictionary.com/identity

i•den•ti•ty (aɪˈdɛn tɪ ti, ɪˈdɛn-) 
n., pl. -ties.1. the state or fact of remaining the same one, as under varying aspects or conditions.
2. the condition of being oneself or itself, and not another: He doubted his own identity.3. condition or character as to who a person or what a thing is: a case of mistaken identity.4. the state or fact of being the same one as described.
5. the sense of self, providing sameness and continuity in personality over time.
6. exact likeness in nature or qualities: an identity of interests.7. an instance or point of sameness or likeness.

In short, identity is- put simply- what makes a 'human' a 'person'. It is the whole of the traits that encompass us, personified and identified by ourselves as being important. 

Language. Culture. Personality. Family background. Beliefs. Values. Morals. Religion. Traditions. Nationality. Political Affiliations. 

These things can not be separated from our essence. Even if they evolve over time, or are even abandoned over the course of our lives, the experience of them forms who we are as individuals. 

 In many ways, they are who and what we are.

And yet, most of these things are socially ascribed. Culture, language, beliefs, values- all of these are socially created concepts, that could have be completely different had we simply been born in a different time or place. In many ways, identity is bequeathed unto us by the society that surrounds us. 

If these mutable traits, thrust onto us by fate or luck, are such important components of who we are, how then can we even begin to weigh the importance of those characteristics that are biologically imprinted into our genetic code?

Ethnicity. Gender. Sexual Orientation. 

Species. Genus. Family.


How can we deny that the wiring and function of our brain, the most dominant identifier of self there is, is not innately part of our identity?

When one is born with certain traits, it is impossible to separate them from these traits. 

All of the current research on autism shows us that the roots of the disorder are at least partially genetic. Other factors, most of which are believed to occur during the actual formation of the cerebral cortex while still in utero, are also believed to contribute to the condition. At this time, very little research indicates that any postpartum environmental factors are involved in the formation of the Autistic mind. 

My son, and all other autistics, were born this way. 

Just as I was not. 

They have never known another brain. They have never experienced the world in any other way. They have never processed the way I process, thought as I thought, heard as I heard, spoken as I speak, touched as I touch.  

Our lived experiences have always been vastly different, from the moment we were born. 

These traits are not just a part of who we are. They are Intrinsic. Essential. Natural.

So when I read something like "I love my son, but I HATE Autism", I am reminded of the cliche above and forced to ask the question: 
But do you even know WHO your son is WITHOUT the Autism? Do you even know where one begins and the other ends?
While Autism is diagnosed and codified based on behaviours, the reality is that- for ALL of us- our behaviours are critical parts of our identity.  Social interactions, communication, sensorial perception, and personal rituals (many of which are stereotypic), these coupled with our inner thoughts comprise the vast majority of our perception of self. 

Who are you, socially speaking? 
Are you an introvert or an extrovert? Do you feel energized by the crowd, or does it drain you? Is touch something you crave or is something you avoid? Are you shy? Outgoing? Quiet? Loud? Do others see you as warm hearted, or cold and calculating? Do you see the world from an analytical viewpoint or do you feel it? 

How do you communicate? 
Are you quiet or loud? Do you use formal language or do you prefer slang? Do you have a hard time understanding metaphors or are you a brilliant user of symbolic language? Do you vary your inflection, or do people find you monotone? Do you hide your feelings or wear your heart on your sleeve? Do you cry in public? Do you cover your mouth when you laugh? 

How does the world feel to you?
Do you get too warm or too cold easily? Do you love the sensation of flying through the sky, like on a rollercoaster? Are you afraid of falling? Do you love olives and anchovies? Can you fall asleep without your blankets? Do you love to snuggle up or is too much 'touch' for you? Do you love loud concerts, or would you rather keep things quiet? How do you adapt to change? Does bright sunlight hurt your eyes? Does wool make you itchy?

What are your rituals? 
Do you brush your hair one hundred times before bed? Do you bite your nails? Pick your nose? Crack your knuckles? Tap your fingers? Bounce your knees? When you are upset, do you curl up into a ball? Do you sometimes find yourself slowly rocking back and forth? Swaying side to side? 

Have you asked yourself why you do these things? 

Do you have an answer?

And would you be able to change any of these traits simply out of desire to? 

Probably not. 

You might learn to adapt, 'overcome' or otherwise 'control' your social self. But you will probably never turn yourself from being an introvert into an extrovert, or from being generally quiet into becoming a talker.  You may learn not to bite your nails, but you will likely still find a way to satisfy your need for oral stimulation. 

And that's ok. We wouldn't want you to. Otherwise you wouldn't be the person that you are.

Yes. You are more than your behaviours. But you are also not seen as less because of them.  And you are not told to hate these traits about yourself, or indoctrinated into thinking that they are the product of some monster, external to you, that has taken over your body and your brain. 

We recognize our own behaviours as being intrinsic to who we are, and yet struggle so much in accepting the same thing of those who are different from us. 

Who you talk about. 
What you find interesting.

What you find funny. 
What you find beautiful.

What brings you comfort.
What makes you anxious.

Who you love.
How you love them. 

How your brain works. 

All pieces of the puzzle that comprises our identity. 

Some puzzles are more complex. They have more pieces and the picture is busier and more abstract. But, when push comes to shove, each piece is connected to the whole. 

We are the combined total of our parts. 

I can not love my son and hate his autism. 

Yes, I can struggle with his behaviours, just as I struggle with my own.  Yes, there are things that I wish were just a little bit easier, for both of us. 

But I can not love my son and hate his autism. 

It is part of who he is- and in many ways defines a significant portion of his identity.

To love Sam is to love all of his parts.

There can be no other answer.