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.
Sincerely,
Sammie's mom.
Tuesday, January 28, 2014
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 topunch 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:
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.
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
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."
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.
Why?
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?
Everything.
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
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.
Neurology.
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:
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.
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?
Everything.
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 (aɪˈdÉ›n tɪ ti, ɪˈdÉ›n-)
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.
Neurology.
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.
Tuesday, December 31, 2013
2013 In Review
2013: A year in review
Amazingly enough, this is a tradition that dates back 8 years! Welcome to the 2013 edition.
Sum Up Your Year In A Nutshell:
Yes! SO MANY BABIES!
Sum Up Your Year In A Nutshell:
2013: Last year, I ended this post by saying that "2013 will have its work cut out for it if its going to top this one." Amazingly enough, I think it did. This year was one of the most eventful, exhausting, amazing years of my life. I have become a better mother, friend, wife and person than I ever thought I could- and have learned that I still have much work to do on all those fronts before becoming the person I really want to be. This was a year of birth, of renewal and of growth. It was also a year of endings, of turbulence and of hardship. It was an exceptional year on all fronts, and I'm glad it's over. ;)
1) What did you do in 2013 that you have never done before?
Held my daughter in my arms. Charlize Andree-Anne was welcomed into our family on February 20th, 2013.
2) Did you keep your New Year's Resolutions and will you make more next year?
Last year's answer: Yes, and no. (See next post). I will be making new "resolutions", but these are more guiding principles than actual tangible goals. The one thing I am learning to (slowly) accept is that life has a way of handing you unpredictable hurdles and that- while goals are important- focusing on flexibility and adaptability are more important life skills for me than accomplishing specific tasks.
This year's answer: I think that, for the most part, I met the goals I outlined for myself last New Years. I have come a long way in terms of flexibility and rolling with life's punches.
My "word" for the 2014 is "ADAPTABILITY"- this has also become my life's mantra. It's a life long journey, but I have the two best tour guides in the world ;)
3) Did someone close to you give birth in 2013?Yes! SO MANY BABIES!
Mine was the first of the 2013 babies in my life, but quick on my heels were baby Hailey, baby Ethan, Baby Sophia, and Baby Flynn (to name just a few from my closest friends).
4) Did someone close to you die?
No one close to me died, but I did feel the grief of friends of mine who lost their loved ones this year. My heart continues to with them.
5) What countries did you visit?
This was the first year in forever that we didn't go anywhere. Like, we didn't even leave central Alberta except for a few trips to Stettler and Calgary. Wow. We're lame. Also, traveling with Sam is a task easier said than done.
6) What did you lack in 2013 that you would like more of in 2014?
Time. I never seem to have enough time.
4) Did someone close to you die?
No one close to me died, but I did feel the grief of friends of mine who lost their loved ones this year. My heart continues to with them.
5) What countries did you visit?
This was the first year in forever that we didn't go anywhere. Like, we didn't even leave central Alberta except for a few trips to Stettler and Calgary. Wow. We're lame. Also, traveling with Sam is a task easier said than done.
6) What did you lack in 2013 that you would like more of in 2014?
Time. I never seem to have enough time.
7) What dates from 2013 will remain etched upon your memory?
February 20th, the day my heart grew two whole sizes!
February 20th, the day my heart grew two whole sizes!
Also, Sam's first day of school, Charlie's first Christmas, Sam's first Christmas concert, and every single word my son spoke for the first time. <3 Also, this year we finally "officially" welcomed a new sister into our family in a perfect wedding that made me smile from cheek to cheek!
8) What was your biggest achievement of the year?
Balancing a newborn, special needs parenting, school schedules, various appointments/therapies, social programming, sensory diets, food restrictions/aversions, taking on a musical, and going back to work has been tremendously difficult. Most days I come out unscathed. That's an achievement, right?
9) What was your biggest failure?
While I'm not sure I would characterize it as a "failure", per say, failing to account for "me" time was something I really struggled with. I definitely need to find the time for the everyday "me" things (she types, as she sits, unshowered and in her pajamas, with a sleeping baby balancing on her lap.)
10) Did you suffer injury or illness?
The "saga" of fertility/pregnancy/labour health related issues ended with a relatively easy Some complications arising from the birth, but nothing compared to what we had experienced in the past. While it is hard to accept that my "child bearing years" are past me, despite the fact that I would probably continue to have kids until I had my own colony, I know that our family is finally complete with Charlie's arrival.
11) What was the best purchase you made?
My Blentec was amazing. Going gluten free/dairy free with Sam came with many challenges, the biggest being that we now have to make almost all our food from scratch. I would be lost without that thing. Also, we just got a new Macbook- it was definitely time to retire the old one, which served us faithfully for over 6 years.
12) Whose behaviour merited the most celebration?
This always a really tough one. I am surrounded by some amazing people. But this year, the answer is a LOT easier than it has been in the past. The one person who blew my mind this year with his achievements is unquestionably Sammie. Every day, in every way, I am amazed at the little man he is becoming. He takes on his obstacles with grace and determination, and a presence of mind that many adults would be well served by. While we still have a long road ahead of us when it comes to meeting all of his needs, Sammie's development is a daily reminder that he is EXACTLY who he is meant to be and that his potential is truly untapped and endless. I am so very proud of him, and so much better for having him in my life.
13) Whose behaviour made you appalled and depressed?
As always, I will not name names nor will I point out one or two people. Instead, I will chose to focus on specific behaviours and patterns that particularly annoyed me this year.
There is one thing in particular that I have learned that I have little patience for: parents who treat their children as inconveniences to be managed instead of human beings to be loved, respected, and uplifted.
In the world of special needs parenting, we have definitely been exposed to all types of families and while I certainly can not tell anyone how to live their lives, there is very little more heartbreaking than hearing parents talk about how "hard" or "awful" or "bad" their children are. Yes, sometimes it is definitely challenging to have a child with a disability. But these are not "bad" kids. And you don't deserve praise or a medal for having a "harder time" with them than other parents do. The fact of the matter is that parenting is hard. It is hard for special needs parents and it is hard for non-special needs parents. But it's what you signed up for. You owe it to your children to give it your all, and not blame them for the things that go wrong in your life.
So yeah, that was probably my biggest pet peeve this year.
14) Where did most of your money go?
Actually, we made some surprisingly good financial decisions this year and are ending it consumer debt free. We still spend a lot more on luxuries than we need to, but our priorities have shifted to providing our kids with everything they need. This was definitely the year that we matured into responsible financial adults, and I am really proud of that.
15) What did you get really really excited about?
Overall, it was an exciting year, but the birth of Charlie was the one thing I got "really" excited about. She is a wonder- a true force to be reckoned with. I've never met a person quite like her and I can't wait to see the beautiful woman she will grow into. (But I am terrified of the toddler years, because she has a VERY spirited side to her...)
16) What song will always remind you of 2013?
"Twinkle Twinkle Little Star"- the first song Sammie ever hummed intentionally. Hearing him sing, with absolutely perfect pitch, was one of the greatest moments of my life. This is followed closely by "Up On The Rooftop", the first song that Sam ever "joined in" with, giving a hearty "ho ho ho" during the chorus while his dad, uncle, aunt and I caroled down Candy Cane Lane. It was amazing.
17) Compared to this time last year, are you?
Happier or hardened? Happier. I don't know if I've ever been this happy. And I think most of the "hardened" side of me has softened out, alone with my waistline ;)
Thinner or fatter? Thinner. I was in my third trimester with Charlie this time last year. And, overall, I am thinner this year than I have been in many, many years- and hopefully this trend will continue.
Richer or poorer? Richer- in more ways than one.
18) What do you wish you'd done more of?
I always wish that I would spend more time actually playing with my kids, but the one thing I really wish is that I'd had more one on one with Jason. Charlie is a very high maintenance baby and we only got our first date night in December of this year. Even then, it was short and very stressful for her (and my poor mom, who had to listen to her cry.) I am looking forward to getting some more time with Jason as Charlie becomes a better sleeper...fingers crossed.
19) What do you wish you'd less of?
I wish I'd spent less time arguing with strangers on Facebook. I have this "debater" side to me that constantly feels the need to discuss every topic, no matter how futile the discussion. This has caused me a great deal of unnecessary stress and it is something I plan on better managing next year.
20) How did you spend Christmas?
Surrounded by my family and friends. It was a lovely holiday, filled with "ho ho ho".
21) Did you fall in love in 2013?
More and more every day. I could not be more deeply in love with my husband if I tried, and I am deeply grateful for the life we have built together.
22) Any one night stands?
Nope.Ha ha. This question makes me laugh every year. I've never really been the "one night stand" kind of person to begin with.
23) What was your favourite program?
I'm a creature of habit, so my favourites are the same every year (West Wing, Lost, 24, Community, etc.) but I did greatly enjoy watching "How I Met Your Mother" this year. I also have a seriously guilty pleasure for "Gossip Girl"- it's like a flashback of all the trashy teen novels I used to love as a kid.
24) Do you hate anyone now that you didn't hate last year?
I have released myself of hatred. That sounds corny, but it's true. I did end several relationships, some with more sadness than others, but I have absolutely no ill will towards any of them.
25) What was the best book you read?
I admit- I LOVED the "Hunger Games"...
26) What was your greatest musical discovery?
This may not be the answer this question is looking for, but this year I "rediscovered" my love of musical theater and stage work and will be beginning 2014 with "Tales of Two Cities". I'm definitely dusty and rusty, but am having a wonderful time with the production.
27) What did you want, and get?
Baby, out on the outside of my belly. Mission: Accomplished. ;) Also, a new espresso machine. This sleep deprived mom needs all the caffeine she can get.
28) What did you want, and not get?
Not much, actually. We are finally in a place where if we want something, we can get it. Though we did buy a whole bunch of new flooring which we haven't had a chance to put in yet. So yeah, that's annoying.
29) Favourite film of this year?
Man, I really didn't watch many movies this year. I enjoyed "Les Mis", for the nostalgia more than the performances. I thought "The Sessions" to be really moving as well. And my drunken, live tweeting marathon of Twilight was epic and awesome.
30) What did you do on your birthday and how old were you?
We went swimming to Servus. It was all very dramatic- my brother's badge got stolen and police got involved. It was crazy and chaotic. But all turned out well and the badge was recovered.
31) What is one thing that would have made your year immeasurably more satisfying?
More sleep. The lack of sleep definitely made this one a more challenging one than in the past. May was particularly difficult, as Sam's sleep had regressed down to 2 or 3 hours a night, total. But since going gluten free, we have seen massive improvements on this front. Now, if only we could convince his sister to follow suit...
32) How would you describe your personal fashion concept in 2013?
Um. "It's clean. It'll do." I finally bought myself an ENTIRELY new wardrobe last week. I will be starting off 2014 by purging any piece of clothing that is older than 3 years and/or too damn big for me.
33) What kept you sane? Family, friends and Sammie and Charlie's awesomeness.
34) Which celebrity/public figure did you fancy the most? I don't really have celebrity crushes. They really aren't my thing.
35) What political issue stirred you the most?
Probably the Remand Strike. Followed closely by the overly dramatized "Fatal Care" series, that proved to me that journalists care more about themselves than the safety of our most vulnerable population. Many idols fell that week...
36) Who do you miss?
My dad. And my family/friends who are far away.
37) Who was the best new person you met?
I met many amazing new people, most specifically linked to Sammie's school. But the one person who has made a huge impact on me this year is Grace Wong and her amazing son, Marcus. Having the support and advice of a parent who has journeyed this path before us has made an incredible difference in my life.
38) Tell us a valuable life lesson you learned in 2013:
As I did last year, I will sum this up with a few quotes:
“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg.” ― Paul Collins
"A daughter is a miracle that never ceases to be miraculous...full of beauty and forever beautiful...loving and caring and truly amazing." -- Deanna Beisser
8) What was your biggest achievement of the year?
Balancing a newborn, special needs parenting, school schedules, various appointments/therapies, social programming, sensory diets, food restrictions/aversions, taking on a musical, and going back to work has been tremendously difficult. Most days I come out unscathed. That's an achievement, right?
9) What was your biggest failure?
While I'm not sure I would characterize it as a "failure", per say, failing to account for "me" time was something I really struggled with. I definitely need to find the time for the everyday "me" things (she types, as she sits, unshowered and in her pajamas, with a sleeping baby balancing on her lap.)
10) Did you suffer injury or illness?
The "saga" of fertility/pregnancy/labour health related issues ended with a relatively easy Some complications arising from the birth, but nothing compared to what we had experienced in the past. While it is hard to accept that my "child bearing years" are past me, despite the fact that I would probably continue to have kids until I had my own colony, I know that our family is finally complete with Charlie's arrival.
11) What was the best purchase you made?
My Blentec was amazing. Going gluten free/dairy free with Sam came with many challenges, the biggest being that we now have to make almost all our food from scratch. I would be lost without that thing. Also, we just got a new Macbook- it was definitely time to retire the old one, which served us faithfully for over 6 years.
12) Whose behaviour merited the most celebration?
This always a really tough one. I am surrounded by some amazing people. But this year, the answer is a LOT easier than it has been in the past. The one person who blew my mind this year with his achievements is unquestionably Sammie. Every day, in every way, I am amazed at the little man he is becoming. He takes on his obstacles with grace and determination, and a presence of mind that many adults would be well served by. While we still have a long road ahead of us when it comes to meeting all of his needs, Sammie's development is a daily reminder that he is EXACTLY who he is meant to be and that his potential is truly untapped and endless. I am so very proud of him, and so much better for having him in my life.
13) Whose behaviour made you appalled and depressed?
As always, I will not name names nor will I point out one or two people. Instead, I will chose to focus on specific behaviours and patterns that particularly annoyed me this year.
There is one thing in particular that I have learned that I have little patience for: parents who treat their children as inconveniences to be managed instead of human beings to be loved, respected, and uplifted.
In the world of special needs parenting, we have definitely been exposed to all types of families and while I certainly can not tell anyone how to live their lives, there is very little more heartbreaking than hearing parents talk about how "hard" or "awful" or "bad" their children are. Yes, sometimes it is definitely challenging to have a child with a disability. But these are not "bad" kids. And you don't deserve praise or a medal for having a "harder time" with them than other parents do. The fact of the matter is that parenting is hard. It is hard for special needs parents and it is hard for non-special needs parents. But it's what you signed up for. You owe it to your children to give it your all, and not blame them for the things that go wrong in your life.
So yeah, that was probably my biggest pet peeve this year.
14) Where did most of your money go?
Actually, we made some surprisingly good financial decisions this year and are ending it consumer debt free. We still spend a lot more on luxuries than we need to, but our priorities have shifted to providing our kids with everything they need. This was definitely the year that we matured into responsible financial adults, and I am really proud of that.
15) What did you get really really excited about?
Overall, it was an exciting year, but the birth of Charlie was the one thing I got "really" excited about. She is a wonder- a true force to be reckoned with. I've never met a person quite like her and I can't wait to see the beautiful woman she will grow into. (But I am terrified of the toddler years, because she has a VERY spirited side to her...)
16) What song will always remind you of 2013?
"Twinkle Twinkle Little Star"- the first song Sammie ever hummed intentionally. Hearing him sing, with absolutely perfect pitch, was one of the greatest moments of my life. This is followed closely by "Up On The Rooftop", the first song that Sam ever "joined in" with, giving a hearty "ho ho ho" during the chorus while his dad, uncle, aunt and I caroled down Candy Cane Lane. It was amazing.
17) Compared to this time last year, are you?
Happier or hardened? Happier. I don't know if I've ever been this happy. And I think most of the "hardened" side of me has softened out, alone with my waistline ;)
Thinner or fatter? Thinner. I was in my third trimester with Charlie this time last year. And, overall, I am thinner this year than I have been in many, many years- and hopefully this trend will continue.
Richer or poorer? Richer- in more ways than one.
18) What do you wish you'd done more of?
I always wish that I would spend more time actually playing with my kids, but the one thing I really wish is that I'd had more one on one with Jason. Charlie is a very high maintenance baby and we only got our first date night in December of this year. Even then, it was short and very stressful for her (and my poor mom, who had to listen to her cry.) I am looking forward to getting some more time with Jason as Charlie becomes a better sleeper...fingers crossed.
19) What do you wish you'd less of?
I wish I'd spent less time arguing with strangers on Facebook. I have this "debater" side to me that constantly feels the need to discuss every topic, no matter how futile the discussion. This has caused me a great deal of unnecessary stress and it is something I plan on better managing next year.
20) How did you spend Christmas?
Surrounded by my family and friends. It was a lovely holiday, filled with "ho ho ho".
21) Did you fall in love in 2013?
More and more every day. I could not be more deeply in love with my husband if I tried, and I am deeply grateful for the life we have built together.
22) Any one night stands?
Nope.Ha ha. This question makes me laugh every year. I've never really been the "one night stand" kind of person to begin with.
23) What was your favourite program?
I'm a creature of habit, so my favourites are the same every year (West Wing, Lost, 24, Community, etc.) but I did greatly enjoy watching "How I Met Your Mother" this year. I also have a seriously guilty pleasure for "Gossip Girl"- it's like a flashback of all the trashy teen novels I used to love as a kid.
24) Do you hate anyone now that you didn't hate last year?
I have released myself of hatred. That sounds corny, but it's true. I did end several relationships, some with more sadness than others, but I have absolutely no ill will towards any of them.
25) What was the best book you read?
I admit- I LOVED the "Hunger Games"...
26) What was your greatest musical discovery?
This may not be the answer this question is looking for, but this year I "rediscovered" my love of musical theater and stage work and will be beginning 2014 with "Tales of Two Cities". I'm definitely dusty and rusty, but am having a wonderful time with the production.
27) What did you want, and get?
Baby, out on the outside of my belly. Mission: Accomplished. ;) Also, a new espresso machine. This sleep deprived mom needs all the caffeine she can get.
28) What did you want, and not get?
Not much, actually. We are finally in a place where if we want something, we can get it. Though we did buy a whole bunch of new flooring which we haven't had a chance to put in yet. So yeah, that's annoying.
29) Favourite film of this year?
Man, I really didn't watch many movies this year. I enjoyed "Les Mis", for the nostalgia more than the performances. I thought "The Sessions" to be really moving as well. And my drunken, live tweeting marathon of Twilight was epic and awesome.
30) What did you do on your birthday and how old were you?
We went swimming to Servus. It was all very dramatic- my brother's badge got stolen and police got involved. It was crazy and chaotic. But all turned out well and the badge was recovered.
31) What is one thing that would have made your year immeasurably more satisfying?
More sleep. The lack of sleep definitely made this one a more challenging one than in the past. May was particularly difficult, as Sam's sleep had regressed down to 2 or 3 hours a night, total. But since going gluten free, we have seen massive improvements on this front. Now, if only we could convince his sister to follow suit...
32) How would you describe your personal fashion concept in 2013?
Um. "It's clean. It'll do." I finally bought myself an ENTIRELY new wardrobe last week. I will be starting off 2014 by purging any piece of clothing that is older than 3 years and/or too damn big for me.
33) What kept you sane? Family, friends and Sammie and Charlie's awesomeness.
34) Which celebrity/public figure did you fancy the most? I don't really have celebrity crushes. They really aren't my thing.
35) What political issue stirred you the most?
Probably the Remand Strike. Followed closely by the overly dramatized "Fatal Care" series, that proved to me that journalists care more about themselves than the safety of our most vulnerable population. Many idols fell that week...
36) Who do you miss?
My dad. And my family/friends who are far away.
37) Who was the best new person you met?
I met many amazing new people, most specifically linked to Sammie's school. But the one person who has made a huge impact on me this year is Grace Wong and her amazing son, Marcus. Having the support and advice of a parent who has journeyed this path before us has made an incredible difference in my life.
38) Tell us a valuable life lesson you learned in 2013:
As I did last year, I will sum this up with a few quotes:
“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg.” ― Paul Collins
"A daughter is a miracle that never ceases to be miraculous...full of beauty and forever beautiful...loving and caring and truly amazing." -- Deanna Beisser
"
I love you without knowing how, or when, or from where. I love you simply, without problems or pride: I love you in this way because I do not know any other way of loving but this, in which there is no I or you, so intimate that your hand upon my chest is my hand, so intimate that when I fall asleep your eyes close." Pablo Neruda
39) Quote a song lyrics that sums up your year:
.
"Everything (Between Us)" (Liz Phair)
We have everything we need here
We have everything between us
You have nothing left to fear dear
Cause it ain't ever gonna leave us
We might get a room downtown now
Get away for a half day
We might drave a car to the next town
Get away from our family
Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you
We have everything we need here
We have everything between us
You have nothing left to fear dear
Cause it ain't ever gonna leave us
Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you
Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you
Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you
We have everything we need here
We have everything between us
I love you without knowing how, or when, or from where. I love you simply, without problems or pride: I love you in this way because I do not know any other way of loving but this, in which there is no I or you, so intimate that your hand upon my chest is my hand, so intimate that when I fall asleep your eyes close." Pablo Neruda
39) Quote a song lyrics that sums up your year:
.
"Everything (Between Us)" (Liz Phair)
We have everything we need here
We have everything between us
You have nothing left to fear dear
Cause it ain't ever gonna leave us
We might get a room downtown now
Get away for a half day
We might drave a car to the next town
Get away from our family
Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you
We have everything we need here
We have everything between us
You have nothing left to fear dear
Cause it ain't ever gonna leave us
Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you
Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you
Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you
We have everything we need here
We have everything between us
Wednesday, December 11, 2013
He shines
Every minute of every passing day, I am rendered speechless by him.
He shines, brighter than the sun, breaking through the darkness between us to touch my spirit and my soul.
One by one, the smiles become brighter. His focus is more present. His eyes are somehow more aware.
He looks at me and his gaze sends shivers down my spine. He sees into me, through me, and I see myself through him. His hand reaches out to mine- a connection so real, so tangible.
Every day, more and more, my son chooses to step out of his world and into mine.
We connect and are one with each other, happily co-existing...different but complimentary, built for each other, despite our different outlooks and understandings. There is a growing peace between us. I no longer fear this unknown journey. He reminds me to always have faith that we are exactly as we are meant to be, perfect in our imperfections.
He is happiness, incarnate.
Today was Sammie's first Christmas concert.
It may sound mundane to some, but for me this was a milestone that I have dreamt of since I first began to envision my life as a mother. To celebrate family, peace, love and laughter with my child is, to me, the very essence of what it means to be a parent. It is a time that unites us and where every miracle seems possible.
Today was one of those days that reminded me of just how far we have come on our journey together. Today was filled with miracles.
As I walked into the crowded room, literally bursting with noise, excitement and anticipation, I made a rookie move. I couldn't help myself. I desperately wanted to see my boy- to show him that I was here, ready and waiting to celebrate this happy occasion with him.
It didn't take me long to find him, squirming in the arms of his aid, his piercing eyes taking in all the activity around him.
His eyes found mine, and we connected.
I was thrilled and waved enthusiastically to him! "Hi baby!"
It took him a second to register what was happening...Mom was here!
And he decided that he DESPERATELY wanted to say hi as well.
Of course, this wasn't the time for visiting. Sammie had to wait with his class. They were the first the go on the stage, and he needed to be ready.
And so there were tears of anger and frustration at being held back from coming to welcome me.
I'll admit, a part of my heart broke watching him struggle. I wanted to take him into my arms and reassure him that everything would be alright.
But there was also a part of me that was joyful. He *wanted* me. He *needed* me. He knew that I was there, was aware of me despite the crowd, and wanted to come to me. And while I wish he didn't feel so frustrated in that moment, my heart soared at the knowledge that he knew that he belonged with me.
There is always a silver lining....
I would like to say that the tears passed quickly. But his frustration was not abated by any of the efforts of his skilled team. My little guy knew what he wanted and would not settle until he got it. So he struggled his way though his song (Up On The Rooftop) and at the very end, gave a big smile when he was finally released. He ran into my arms for a great big bear hug!
We spent the rest of the concert together, dancing, holding hands and playing games with each other as the other classes did their presentations. When he felt overwhelmed, he rested his face into the crook of my neck, the way he did when he was just an infant. He found his safety and security in me.
And from the moment he jumped into my arms, no tears were shed.
Parenting expectations are funny things. I know many people who would have been frustrated, even angry, at their children for being "that kid" who cried through the entire song. I know many parents who would have been disappointed that his bow tie was crooked or that he had peanut butter in his hair. I know many parents that would have wanted to see him, sitting peacefully and obediently beside his teachers, waiting for his turn to be called.
In a different time, at a different place, I might have felt the same way. In fact, I know that I would have.
But if there has been one gift that I have been given in this unexpected parenting journey it is this:
Reality far exceeds expectations, if only you learn the cherish the what is instead of the what might have been.
We do not count the beads of sweat on the face of the victorious marathon winner.
We do not
The victories in life happen when and where we least expect them.
He shines, brighter than the sun, breaking through the darkness between us to touch my spirit and my soul.
One by one, the smiles become brighter. His focus is more present. His eyes are somehow more aware.
He looks at me and his gaze sends shivers down my spine. He sees into me, through me, and I see myself through him. His hand reaches out to mine- a connection so real, so tangible.
Every day, more and more, my son chooses to step out of his world and into mine.
We connect and are one with each other, happily co-existing...different but complimentary, built for each other, despite our different outlooks and understandings. There is a growing peace between us. I no longer fear this unknown journey. He reminds me to always have faith that we are exactly as we are meant to be, perfect in our imperfections.
He is happiness, incarnate.
Today was Sammie's first Christmas concert.
It may sound mundane to some, but for me this was a milestone that I have dreamt of since I first began to envision my life as a mother. To celebrate family, peace, love and laughter with my child is, to me, the very essence of what it means to be a parent. It is a time that unites us and where every miracle seems possible.
Today was one of those days that reminded me of just how far we have come on our journey together. Today was filled with miracles.
As I walked into the crowded room, literally bursting with noise, excitement and anticipation, I made a rookie move. I couldn't help myself. I desperately wanted to see my boy- to show him that I was here, ready and waiting to celebrate this happy occasion with him.
It didn't take me long to find him, squirming in the arms of his aid, his piercing eyes taking in all the activity around him.
His eyes found mine, and we connected.
I was thrilled and waved enthusiastically to him! "Hi baby!"
It took him a second to register what was happening...Mom was here!
And he decided that he DESPERATELY wanted to say hi as well.
Of course, this wasn't the time for visiting. Sammie had to wait with his class. They were the first the go on the stage, and he needed to be ready.
And so there were tears of anger and frustration at being held back from coming to welcome me.
I'll admit, a part of my heart broke watching him struggle. I wanted to take him into my arms and reassure him that everything would be alright.
But there was also a part of me that was joyful. He *wanted* me. He *needed* me. He knew that I was there, was aware of me despite the crowd, and wanted to come to me. And while I wish he didn't feel so frustrated in that moment, my heart soared at the knowledge that he knew that he belonged with me.
There is always a silver lining....
I would like to say that the tears passed quickly. But his frustration was not abated by any of the efforts of his skilled team. My little guy knew what he wanted and would not settle until he got it. So he struggled his way though his song (Up On The Rooftop) and at the very end, gave a big smile when he was finally released. He ran into my arms for a great big bear hug!
We spent the rest of the concert together, dancing, holding hands and playing games with each other as the other classes did their presentations. When he felt overwhelmed, he rested his face into the crook of my neck, the way he did when he was just an infant. He found his safety and security in me.
And from the moment he jumped into my arms, no tears were shed.
Parenting expectations are funny things. I know many people who would have been frustrated, even angry, at their children for being "that kid" who cried through the entire song. I know many parents who would have been disappointed that his bow tie was crooked or that he had peanut butter in his hair. I know many parents that would have wanted to see him, sitting peacefully and obediently beside his teachers, waiting for his turn to be called.
In a different time, at a different place, I might have felt the same way. In fact, I know that I would have.
But if there has been one gift that I have been given in this unexpected parenting journey it is this:
Reality far exceeds expectations, if only you learn the cherish the what is instead of the what might have been.
We do not count the beads of sweat on the face of the victorious marathon winner.
We do not
The victories in life happen when and where we least expect them.
Tuesday, December 3, 2013
I dropped the ball...ish
Well, sort of. I quit before the end of my NABLOPOMO challenge last November. I didn't forget about it as much as I consciously decided to step away for a few weeks.
The thing about blogging is that it is therapeutic for me. It is a place where I can organize my thoughts, share my feelings, and record the memorable moments of our lives.
But sometimes, it isn't therapeutic. Sometimes it is stressful and too much. And when it is, I take a step back- from the blog, and usually from social media in general because I find that the two go hand in hand. I don't step back because the blog makes me unhappy, but I do step away from it because it is time consuming. And if I am "unhappy", it almost always means that I have been misallocating my time and messing with my very delicate life balance.
So I walk away for a week. Or two. Or a month. Maybe more. It doesn't matter.
What does matter is what I do instead.
Last month, instead of blogging, I snuggled with my husband.
I read stories to my babies.
I had long phone dates late at night with my friends.
I drank a few too many glasses of wine.
I put up my Christmas tree.
I cleaned out my storage room (a project I've been procrastinating on for years).
I bought all my Christmas gifts.
I watched some favourite movies.
I took some long baths.
I spent too much time stressing about politics.
I visited with my family.
I played trains with Sammie.
I taught Charlie how to clap and how to say "HUZZAH" when she is excited.
I slowed down.
I made memories.
And, slowly, I started to feel better and I started to take control over the things that were causing me unhappiness and stress.
Because as therapeutic as this space is, there is no therapy greater than spending more time with the ones that I love.
So now I am back, and I'm doing another "challenge" (which I will write about right away). I can't promise you that I will be faithful to it, but I can tell you that I am going to enjoy it.
And if I don't, I will simply walk away and live to blog another day.
:)
The thing about blogging is that it is therapeutic for me. It is a place where I can organize my thoughts, share my feelings, and record the memorable moments of our lives.
But sometimes, it isn't therapeutic. Sometimes it is stressful and too much. And when it is, I take a step back- from the blog, and usually from social media in general because I find that the two go hand in hand. I don't step back because the blog makes me unhappy, but I do step away from it because it is time consuming. And if I am "unhappy", it almost always means that I have been misallocating my time and messing with my very delicate life balance.
So I walk away for a week. Or two. Or a month. Maybe more. It doesn't matter.
What does matter is what I do instead.
Last month, instead of blogging, I snuggled with my husband.
I read stories to my babies.
I had long phone dates late at night with my friends.
I drank a few too many glasses of wine.
I put up my Christmas tree.
I cleaned out my storage room (a project I've been procrastinating on for years).
I bought all my Christmas gifts.
I watched some favourite movies.
I took some long baths.
I spent too much time stressing about politics.
I visited with my family.
I played trains with Sammie.
I taught Charlie how to clap and how to say "HUZZAH" when she is excited.
I slowed down.
I made memories.
And, slowly, I started to feel better and I started to take control over the things that were causing me unhappiness and stress.
Because as therapeutic as this space is, there is no therapy greater than spending more time with the ones that I love.
So now I am back, and I'm doing another "challenge" (which I will write about right away). I can't promise you that I will be faithful to it, but I can tell you that I am going to enjoy it.
And if I don't, I will simply walk away and live to blog another day.
:)
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